Gail is recuperating nicely. She has even been driving a little, which is exciting and scary at the same time. She drove herself to church this morning, and enjoyed being there in the congregation without having to stand up and sing with the choir all the time.
Those nice people from church are going to go to a place in town called Fresh Prep where they will make a bunch of meals for us, and bring them to us to put in the freezer. It is so sweet of them, and I really appreciate it.
It is hard for me to accept help, much less ask for it. This may be part of what I should be learning from this experience.
Sunday, May 11, 2008
Wednesday, April 23, 2008
Definitely better
We went back to UCSF yesterday for Transplant Clinic. It was good. All her blood counts are perfect, her temp is stable, both organs are doing what they are supposed to do, and everything is looking good.
They reduced one of her 17 medications from everyday to Mon, Wed, Friday; reduced the number of times every week that she has to go to the local lab for blood draws from every Monday and Thursday to just Mondays, and we don't have to go back to the clinic in SF until May 20th. Plus they approved the reduction to the amount of blood pressure meds she is taking.
So all in all, it was a very successful visit.
She is still tired, but it feels more like she is just recuperating rather than anything being wrong underneath or on top of the surgery.
I am frantically trying to make up for the three weeks lost at work. Whimper!!
They reduced one of her 17 medications from everyday to Mon, Wed, Friday; reduced the number of times every week that she has to go to the local lab for blood draws from every Monday and Thursday to just Mondays, and we don't have to go back to the clinic in SF until May 20th. Plus they approved the reduction to the amount of blood pressure meds she is taking.
So all in all, it was a very successful visit.
She is still tired, but it feels more like she is just recuperating rather than anything being wrong underneath or on top of the surgery.
I am frantically trying to make up for the three weeks lost at work. Whimper!!
Saturday, April 19, 2008
Better?
Hmmm...Gail seems a little more cheerful this morning. Maybe between the increased anti-depressant and the lowered blood pressure medication, things are moving back into place. Hope is peeking out!
Friday, April 18, 2008
Blood Pressure
I have been worried about Gail's mood. I know that she is only 3 1/2 weeks out from surgery, but she is very low energy and not her usual cheerful self. We have adjusted one of her meds to counteract a drug interaction we know about, and that has been a little bit helpful.
Then I thought maybe her energy was low because she red blood cell count was low. Often when she was on dialysis she would start getting very low energy when her blood count was low. They would put her on ProCrit, and she would perk up again. So we went in to see one of her very nice nephrologists to get her set up for ProCrit in case her blood count was low. But when we were there, her latest blood work showed that her blood count was in the low/normal range. So that doesn't appear to be a problem right now.
But the doctor was just checking her over before we left, and her blood pressure was only 70 over 40! She was fine, not dizzy or anything, but the blood pressure needs to be high enough to ensure that the pancreas is getting good blood flow. The doctor recommended that she be admitted to the hospital overnight to get a saline drip. Gail did NOT want to do this, and I could see she was getting ready to dig her heels in. So I suggested that we go out to the waiting room, get her a big ol' bag of Cheetos and a lot of fluids and let her tank up. Then we could check her pressure in an hour or so.
Fortunately, this worked, and we were able to go home. We went back in to check it this morning, and it was OK.
It looks like her new kidney is doing its job really well, and she may not need so much blood pressure medication. Anything we can do to reduce the amount of medications she is on would be a very good thing.
And maybe low blood pressure has been contributing to her low energy level.
It is hard for me to gauge whether I am just impatient for her to get well, or if her energy level and affect really are being negatively affected by something. We are going back to UCSF for transplant clinic on Tuesday, so we will discuss all these things with them then.
As for me, I am very tired. Work is overwhelming, and it is very hard to spend an entire unplanned morning at the doctor's office when I needed to be at work.
If I can just make it through June....
Then I thought maybe her energy was low because she red blood cell count was low. Often when she was on dialysis she would start getting very low energy when her blood count was low. They would put her on ProCrit, and she would perk up again. So we went in to see one of her very nice nephrologists to get her set up for ProCrit in case her blood count was low. But when we were there, her latest blood work showed that her blood count was in the low/normal range. So that doesn't appear to be a problem right now.
But the doctor was just checking her over before we left, and her blood pressure was only 70 over 40! She was fine, not dizzy or anything, but the blood pressure needs to be high enough to ensure that the pancreas is getting good blood flow. The doctor recommended that she be admitted to the hospital overnight to get a saline drip. Gail did NOT want to do this, and I could see she was getting ready to dig her heels in. So I suggested that we go out to the waiting room, get her a big ol' bag of Cheetos and a lot of fluids and let her tank up. Then we could check her pressure in an hour or so.
Fortunately, this worked, and we were able to go home. We went back in to check it this morning, and it was OK.
It looks like her new kidney is doing its job really well, and she may not need so much blood pressure medication. Anything we can do to reduce the amount of medications she is on would be a very good thing.
And maybe low blood pressure has been contributing to her low energy level.
It is hard for me to gauge whether I am just impatient for her to get well, or if her energy level and affect really are being negatively affected by something. We are going back to UCSF for transplant clinic on Tuesday, so we will discuss all these things with them then.
As for me, I am very tired. Work is overwhelming, and it is very hard to spend an entire unplanned morning at the doctor's office when I needed to be at work.
If I can just make it through June....
Wednesday, April 16, 2008
Home Sweet Home
Things are going well, finally.
I am back at work a lot, and Gail is staying at home with the pups. She is still really tired and low-energy, but she is not in much pain. She takes herself on a little short walk most days. She has to have blood drawn locally on Mondays and Thursdays, and that is time-consuming, but not a big deal.
So things have settled down. I think now she just has to recuperate from the surgery itself. The transplant center says all her blood numbers are perfect.
Things will be blissfully boring for a while, we hope!!
I am back at work a lot, and Gail is staying at home with the pups. She is still really tired and low-energy, but she is not in much pain. She takes herself on a little short walk most days. She has to have blood drawn locally on Mondays and Thursdays, and that is time-consuming, but not a big deal.
So things have settled down. I think now she just has to recuperate from the surgery itself. The transplant center says all her blood numbers are perfect.
Things will be blissfully boring for a while, we hope!!
Thursday, April 10, 2008
Jiggity Jig!
The docs came in said that they didn't get enough tissue from the pancreas biopsy to rule out rejection. But her temps have been normal for 36 hours and all her blood work is "perfect." So they are discharging her this afternoon and we are fine with that.
We are going to be more careful about not tiring her out and screening people for colds. The docs said that we should avoid people with flu or diarrhea (duh!). They also said to avoid babies because they never wash their hands. They didn't think masks were necessary unless we are hanging around people with TB.
So I think we are heading home to take up our lives again.
I asked Gail how many nights she thought we have been home since the surgery, and she said 3, which is exactly what I would have said. But we were home for nine nights! It seems like we have hardly been home at all.
It's gonna be great!
We are going to be more careful about not tiring her out and screening people for colds. The docs said that we should avoid people with flu or diarrhea (duh!). They also said to avoid babies because they never wash their hands. They didn't think masks were necessary unless we are hanging around people with TB.
So I think we are heading home to take up our lives again.
I asked Gail how many nights she thought we have been home since the surgery, and she said 3, which is exactly what I would have said. But we were home for nine nights! It seems like we have hardly been home at all.
It's gonna be great!
Wednesday, April 09, 2008
April 9th
Gail had her biopsy this morning around 10. Then she had to llay flat on her back for six hours. After a few hours she got to eat something, but couldn't keep it down ( think Vesuvious). Once that was over she felt OK.
We haven't received the results from the biopsy yet, but we think we will get them in the morning. And w think we will come home tomorrow. Finally.
We haven't received the results from the biopsy yet, but we think we will get them in the morning. And w think we will come home tomorrow. Finally.
Monday, April 07, 2008
April 8
All the test results have come in (including the CMV) and they are all negative. So we know lots of things that are NOT causing her elevated temperatures but not what IS.
So she will have a pancreas biopsy tomorrow with ultrasound. If they can get the tissue they want, they will be able to tell if there are any early signs of rejection. If they do find indications of rejection, she'll stay here for a few more days while they give her prednisone.
But we don't think that they will find any rejection. We think that the biopsy will turn out fine and they will send us home on Thursday without ever knowing what is causing the fevers. The doc said that sometimes people with pancreas transplants have unexplained fevers during the first month. And I think that is what we will end up with.
We have been playing Scrabble. How would you like to play with someone who plays VIZIER one day and ZEALOUS the next? I keep thinking that her medical situation will give me an edge in Scrabble, but no such luck.
It got so bad today that I went to a yarn store and bought some yarn and needles. Gail started knitting lessons and I am working on a nice simple washcloth. Now, that's scary!
So she will have a pancreas biopsy tomorrow with ultrasound. If they can get the tissue they want, they will be able to tell if there are any early signs of rejection. If they do find indications of rejection, she'll stay here for a few more days while they give her prednisone.
But we don't think that they will find any rejection. We think that the biopsy will turn out fine and they will send us home on Thursday without ever knowing what is causing the fevers. The doc said that sometimes people with pancreas transplants have unexplained fevers during the first month. And I think that is what we will end up with.
We have been playing Scrabble. How would you like to play with someone who plays VIZIER one day and ZEALOUS the next? I keep thinking that her medical situation will give me an edge in Scrabble, but no such luck.
It got so bad today that I went to a yarn store and bought some yarn and needles. Gail started knitting lessons and I am working on a nice simple washcloth. Now, that's scary!
Thursday, April 03, 2008
Quiet Day
Regardless of what the blog header says, it is about 8:30 on Sat night the 5th of April.
We have had a quiet day at UCSF. Gail had an ultrasound this morning and a CAT scan this afternoon. Lots of tests have been taken, but no results yet on any of them.
I don't think we will be home until we get some results. Her temp has been stable today at about 99 degrees.
They tried to give her a new IV today, but couldn't get it seated right so they will have to try again tonight. Her arms are really bruised and sensitive so she is pretty apprehensive about it.
I am pissed because she never got fed today. I know she couldn't eat before the CAT scan, but that was hours ago and they have brought her nothing. The cafeteria is closed so I can't get her anything.
That is the only thing that hasn't been handled well here, and I don't like it.
We have had a quiet day at UCSF. Gail had an ultrasound this morning and a CAT scan this afternoon. Lots of tests have been taken, but no results yet on any of them.
I don't think we will be home until we get some results. Her temp has been stable today at about 99 degrees.
They tried to give her a new IV today, but couldn't get it seated right so they will have to try again tonight. Her arms are really bruised and sensitive so she is pretty apprehensive about it.
I am pissed because she never got fed today. I know she couldn't eat before the CAT scan, but that was hours ago and they have brought her nothing. The cafeteria is closed so I can't get her anything.
That is the only thing that hasn't been handled well here, and I don't like it.
Back to UCSF AGAIN!!!
Gail is resting now. She is receiving a unit of blood, and that is making her feel better. Her temp went up to 102.2 again, and they put ice water floaties around her. That brought her temp down to normal, so that is good.
The medical transport will be here at 9 pm to take her to SF. I'll follow in our car.
The medical transport will be here at 9 pm to take her to SF. I'll follow in our car.
Musing
I think we are all so delighted with Gail's progress that it is easy to forget what a complex and significant ordeal she has undergone. She IS doing great but she still has a long way to go.
Back in the ER
I think everything is going to be OK, but it is a little scary.
Gail called me out of rehearsal and told me she was in trouble and needed help. She had gotten chilled and checked her temperature. It got as high as 102.2. She called UCSF and they said to bring her into the Emergency Room.
So we've been here almost 5 hours. Her temp is normal now and her blood work looks OK. They did an ultra sound of her organs and they looked fine.
So I think they are just going to keep her overnight for observation. Hopefully they won't send us to UCSF.
She's sleeping now. I hope they have all her meds for tonight...
I hope we are able to figure out why her temp spiked. All I can think of is maybe she didn't stay hydrated enough. But I don't know if that can cause a temp to spike.
Gail called me out of rehearsal and told me she was in trouble and needed help. She had gotten chilled and checked her temperature. It got as high as 102.2. She called UCSF and they said to bring her into the Emergency Room.
So we've been here almost 5 hours. Her temp is normal now and her blood work looks OK. They did an ultra sound of her organs and they looked fine.
So I think they are just going to keep her overnight for observation. Hopefully they won't send us to UCSF.
She's sleeping now. I hope they have all her meds for tonight...
I hope we are able to figure out why her temp spiked. All I can think of is maybe she didn't stay hydrated enough. But I don't know if that can cause a temp to spike.
Monday, March 31, 2008
Church Check-In
Gail felt up to going to church yesterday. We were a little nervous about people welcoming her back too boisterously, so we sort of snuck in late and sat at the back.
It was Dave's last service before his sabbatical, so everybody was there to see him off. As she was welcoming everyone, Heather announced that she had seen Gail and me come into the sanctuary, and that we were back for the first time after Gail's successful kidney and pancreas transplant. The room filled with the sound of people clapping, and then they started stomping their feet (led by the choir, I am sure), and then they all stood up and clapped and cheered some more. They kept clapping for a really long time. It was an incredibly sweet moment and meant so much to us.
We stayed through communion and then left early. Gail was pretty tired but really happy that we went. She rested or slept for the rest of the evening. She was hurting a bit, so she took something stronger than Tylenol, which she rarely does, and that made her feel better. We went out a little this morning, and she has been sleeping most of today.
Tomorrow we go back up to SF for the transplant clinic. I don't think she will get her staples taken out until next week, but her incision is beginning to look very good to me!
It was Dave's last service before his sabbatical, so everybody was there to see him off. As she was welcoming everyone, Heather announced that she had seen Gail and me come into the sanctuary, and that we were back for the first time after Gail's successful kidney and pancreas transplant. The room filled with the sound of people clapping, and then they started stomping their feet (led by the choir, I am sure), and then they all stood up and clapped and cheered some more. They kept clapping for a really long time. It was an incredibly sweet moment and meant so much to us.
We stayed through communion and then left early. Gail was pretty tired but really happy that we went. She rested or slept for the rest of the evening. She was hurting a bit, so she took something stronger than Tylenol, which she rarely does, and that made her feel better. We went out a little this morning, and she has been sleeping most of today.
Tomorrow we go back up to SF for the transplant clinic. I don't think she will get her staples taken out until next week, but her incision is beginning to look very good to me!
Saturday, March 29, 2008
Home Sweet Home
We had a very restful night in our own home last night. Gail is feeling well enough to go out to breakfast this morning. We even walked briefly around the farmers market. I bought her some brussels sprouts, which I don't like, but I guess I'll cook them for her. (Yech!)
It is wonderful to be home again. It is wonderful to be typing on a full size keyboard again. I did all the blogging for the last two weeks on my phone, and it wasn't the easiest thing to do. On the other hand, it was way easier than carrying even a laptop around.
We're trying to get organized around here! Enormous quantities of new medications to bring in and a surprising amount of old meds to get rid of somehow. We have a bunch of vials of insulin in the refrigerator taking up space that she doesn't need any more! Other diabetic equipment and supplies as well. It's pretty amazing.
Thanks to all of you yet again for your support. I have about 80 emails saved that we got over the last two weeks. I am going to print them out for Gail to read again. It meant so much to both of us to hear from you!
It is wonderful to be home again. It is wonderful to be typing on a full size keyboard again. I did all the blogging for the last two weeks on my phone, and it wasn't the easiest thing to do. On the other hand, it was way easier than carrying even a laptop around.
We're trying to get organized around here! Enormous quantities of new medications to bring in and a surprising amount of old meds to get rid of somehow. We have a bunch of vials of insulin in the refrigerator taking up space that she doesn't need any more! Other diabetic equipment and supplies as well. It's pretty amazing.
Thanks to all of you yet again for your support. I have about 80 emails saved that we got over the last two weeks. I am going to print them out for Gail to read again. It meant so much to both of us to hear from you!
Thursday, March 27, 2008
We're Comin' Home...Again!
The docs cleared Gail to come home this afternoon. They'll remove the IV and let her go. I am really glad we came up here. She is much stronger and more well rested than she was when we came home before.
She looks so good that it is hard to remember that she has undergone such a huge surgery.
When they remove the IV, it will be the first time in 5 years that she hasn't had a tube of some kind inserted in her body.
I am so happy to bring her home. Again. And better than ever.
She looks so good that it is hard to remember that she has undergone such a huge surgery.
When they remove the IV, it will be the first time in 5 years that she hasn't had a tube of some kind inserted in her body.
I am so happy to bring her home. Again. And better than ever.
C Dif Free
They just popped in and told us that her test for Clostridium Deficile turned out negative, so that is good news.
Now we know one thing that didn't cause her problems. We still don't know what did cause them, but it's a step in the right direction.
Now we know one thing that didn't cause her problems. We still don't know what did cause them, but it's a step in the right direction.
But wait! There's more!
Things are very quiet here. Gail is napping. She is still having bouts of diarhea, but she is is on a saline IV so we aren't worried about dehydration.
WWill probably be here till Saturday, but it's fine with us. I have decided that they didn't discharge us on Sunday. They just gave us a 2 day leave for a little R+R. We've come back to finish ourvtour of duty.
Plus we are in a private room and that is infinitely more comfortable.
It's not best hotel we've ever stayed in. But it's not the worst, either!
WWill probably be here till Saturday, but it's fine with us. I have decided that they didn't discharge us on Sunday. They just gave us a 2 day leave for a little R+R. We've come back to finish ourvtour of duty.
Plus we are in a private room and that is infinitely more comfortable.
It's not best hotel we've ever stayed in. But it's not the worst, either!
Wednesday, March 26, 2008
Small Setback
We are back in UCFS tonight. Gail was having diarhea and vomiting all day. After consulting with her doctor we decided to readmit her so they can give her an IV to be sure she doesn't get dehydrated.
She is a little sad and a little scared, but we are both glad she is here. This way no damage will be done while they figure out what's going on.
Our friend Mary said, That's just what happens.One step forward, one syep backwards, and the tango continues.
And the dance goes on!
She is a little sad and a little scared, but we are both glad she is here. This way no damage will be done while they figure out what's going on.
Our friend Mary said, That's just what happens.One step forward, one syep backwards, and the tango continues.
And the dance goes on!
Tuesday, March 25, 2008
Back for our First Check-up
Gail is doing great (how many times have I said that in the last 8 days!!). Her strength comes back a little each day, and she is sleeping well at night. Yesterday I took her to the Medical Clinic here in town for a blood draw. She will have to go in every Monday and every Thursday for the foreseeable future to get blood drawn. The Transplant Team will monitor her this way.
Today we are driving back to San Francisco for her first transplant clinic. We'll do that every week for a couple of weeks and then it will taper off.
We are learning her new medical regimen which mainly involves the ingestion of 17 or 18 different drugs at various times of the day. It is definitely doable, and will soon be second nature. At the moment, it is taking quite a bit of concentration and much fumbling of papers.
Today we are driving back to San Francisco for her first transplant clinic. We'll do that every week for a couple of weeks and then it will taper off.
We are learning her new medical regimen which mainly involves the ingestion of 17 or 18 different drugs at various times of the day. It is definitely doable, and will soon be second nature. At the moment, it is taking quite a bit of concentration and much fumbling of papers.
Headed home
Gail came home on March 23rd wearing the socks Sarah knitted for her so many months ago. She is doing great. Our deepest thanks go out to all of you who wrote and called and visited. Your support made all the difference!
And words cannot express our gratitude to the person and his or her family who donated her new kidney and pancreas. The expanse of our joy was deepened by your sacrifice.
And words cannot express our gratitude to the person and his or her family who donated her new kidney and pancreas. The expanse of our joy was deepened by your sacrifice.
Look ma! No central line in my neck!!
We measured the success each day by how many lines and tubes were removed. This was a great day, because the central line was removed.
She walks!
Notice she has her glasses on! Nothing wakes you up quite like having your glasses on!
She did a good amount of walking around on the floor, building up her strength so she can come home. Everywhere she went, she had to drag the IV pole around, so that sort of slowed her down a little.
She did a good amount of walking around on the floor, building up her strength so she can come home. Everywhere she went, she had to drag the IV pole around, so that sort of slowed her down a little.
Proboscis
Here is Gail a day or two after surgery! She is out of the ICU and in a regular patient room on 9 Long, the kidney/pancreas/liver transplant unit. She has an oxygen tube, a nasal/grastro tube (to keep her stomach empty), and a central line into her neck to deliver drugs.
In the ICU
Here is a picture from March 17th or 18th. Gail is in the ICU, sitting up. She has many inscrutable tubes going in her and out of her. She enjoyed having friends visit her, even tho she got pooped out pretty quickly!
Sunday, March 23, 2008
And then...
The doctor just took the dialysis catheter out after 17 months. That is a huge deal. Having it removed is like the closing parenthesis.
He tild her to be sure not to get dehydrated. "Be sure you eat plenty of salt and drinks lots of fluids" he said, to our amazement and amusement.
I think we wull head home around 6 this evening.
He tild her to be sure not to get dehydrated. "Be sure you eat plenty of salt and drinks lots of fluids" he said, to our amazement and amusement.
I think we wull head home around 6 this evening.
Sunday
Gail is doing great. She still has one IV in, but it's not hooked up to anything. She is free to get up and walk or pee or anything she wants without pulling the IV pole behind her.
She looks better than she has in a very ling time.
Her blood sugar after brekfast was 120!!! Normal!
We are pretty sure she'll go home today. They are going to to take the dialysis catheter out this afternoon, and we wikk see how she is feeling after that.
She looks better than she has in a very ling time.
Her blood sugar after brekfast was 120!!! Normal!
We are pretty sure she'll go home today. They are going to to take the dialysis catheter out this afternoon, and we wikk see how she is feeling after that.
Friday, March 21, 2008
Saturday Morning
They took the central line out of her neck late last night and they are going to take the remaining IV out today. They have cleared her to start drinking liquids.
Not much else to do but send her home tomorrow!
Not much else to do but send her home tomorrow!
Poop Happens
And when poop happens, nose tubes can be removed. And life is easier without a tube up your nose.
After last night's hard time, today was much easier. She got a bed bath and felt much better.
She still isn't taking anything by mouth, but that should happen very soon.
Much progress today along with three visits from three dear friends, right when we needed them the most.
After last night's hard time, today was much easier. She got a bed bath and felt much better.
She still isn't taking anything by mouth, but that should happen very soon.
Much progress today along with three visits from three dear friends, right when we needed them the most.
Friday Morning
Gail had a rough night. Now that the foley catheter is out, she has to get up and pee every two or three hours so her sleep is disturbed.
The night nurse was nice but scattered. She was emptying Gail's drains and did something that suddenly hurt her. It surprised her as well as hurt her and that was upsetting.
Then in the middle of the night, she got up to pee and got chilled and couldn't stop shivering. So that scared her.
The euphoria of the transplant is beginning to fade, and the grind of recuperation is beginning.
The night nurse was nice but scattered. She was emptying Gail's drains and did something that suddenly hurt her. It surprised her as well as hurt her and that was upsetting.
Then in the middle of the night, she got up to pee and got chilled and couldn't stop shivering. So that scared her.
The euphoria of the transplant is beginning to fade, and the grind of recuperation is beginning.
Tuesday, March 18, 2008
Thursday Afternoon
Things continue to go well.
They removed the foley catheter, so Gail is more comfortable now. She walked for about 20 minutes and even climbed a short set of stairs. We are feeling very confident about her being able to climb the stairs at home.
The only thing we are worried about now is the puppies trampolining off her belly, as they sometimes do in their doggy excitement.
Her pancreas is still sluggish. She went down for an ultrasound this afternoon to be sure there aren't any problems.
They removed the foley catheter, so Gail is more comfortable now. She walked for about 20 minutes and even climbed a short set of stairs. We are feeling very confident about her being able to climb the stairs at home.
The only thing we are worried about now is the puppies trampolining off her belly, as they sometimes do in their doggy excitement.
Her pancreas is still sluggish. She went down for an ultrasound this afternoon to be sure there aren't any problems.
More Good News
The docs just came in and said she's doing good. We are still waiting for her to pass gas, which means her digestive system is working.
They said they are planning to send her home on Sunday!
Woo hoo!
They said they are planning to send her home on Sunday!
Woo hoo!
Day 3, 8 pm
Things are still going well. Gail looks good and she walked around a little this afternoon. She felt very proud of herself.
A friend of ours visited who saw Gail a couple of weeks ago. She said she looks much better now than she did then, before the surgery!
I agree. Her color is good, her eyes are bright, and she is sleepy but not exhausted. That's a big change!
They took the bandages off today. It is a very long incision right up the middle of her belly. I took a photo if you want to see. It's interesting in a gruesome sort of way!
One of the nurses began giving us instructions on how to live after transplant, which mostly consists of what meds to take when, and on how to recognise infection and rejection. It's not as complicated as we feared it would be. We can do this.
It was also the first time in many years that we have been the recipients of a presentation about the importance of safe sex. That was fairly amusing.
Lots of you have sent emails and they are wonderful. Thank you so much!
A friend of ours visited who saw Gail a couple of weeks ago. She said she looks much better now than she did then, before the surgery!
I agree. Her color is good, her eyes are bright, and she is sleepy but not exhausted. That's a big change!
They took the bandages off today. It is a very long incision right up the middle of her belly. I took a photo if you want to see. It's interesting in a gruesome sort of way!
One of the nurses began giving us instructions on how to live after transplant, which mostly consists of what meds to take when, and on how to recognise infection and rejection. It's not as complicated as we feared it would be. We can do this.
It was also the first time in many years that we have been the recipients of a presentation about the importance of safe sex. That was fairly amusing.
Lots of you have sent emails and they are wonderful. Thank you so much!
Wednesday, Day 3, 11 am
Gail continues to do very well. She slept well and she looks great. They will make her start walking around today, which I think she is both looking forward to and dreading at the same time.
I have been reading your emails to her and she loves them.
Unfortunately, I don't have time to respond to each one, so I hope this thanks will suffice for now.
We are filled with gratitude!
I have been reading your emails to her and she loves them.
Unfortunately, I don't have time to respond to each one, so I hope this thanks will suffice for now.
We are filled with gratitude!
Day 2
Gail is in her regular room now. It is blissfully quieter than the ICU.
She is still hooked up to lots of tubes doing inscrutable things, but she is in no pain thanks to the wonders of modern day pharmacology.
Her dad and Mary came today, and Cheryl and Kathy and then Dave. It was great to see them but it did wear her out.
She has been sleeping since she got here.
And the second day was good too.
She is still hooked up to lots of tubes doing inscrutable things, but she is in no pain thanks to the wonders of modern day pharmacology.
Her dad and Mary came today, and Cheryl and Kathy and then Dave. It was great to see them but it did wear her out.
She has been sleeping since she got here.
And the second day was good too.
Still good.. She hasn't had
Still good.. She hasn't had any insulin and her blood sugar is dropping, so we are very happy.
She is getting ready to sit up for the first time
Day 2 I just saw
Day 2
I just saw Gail this morning and she is doing fine. They will probably move her out of intensive care today. She is still very groggy.
Monday, March 17, 2008
So her blood sugar is
So her blood sugar is dropping, that means her new pancreas is working. Gail has been a diabetic for 35 years. And now she's not.
Miracle.
She's out! The doc called.
She's out!
The doc called. The surgery went well. Very little loss of blood. And get this! He said the organs are both working already!
Gail has been in surgery
Gail has been in surgery for four hours with two to go.
I am feeling supremely confident that everything is going to work out great. It's good
They took Gail into the
They took Gail into the OR at about 6 am. The doc said the surgery will take about six hours. We didn't get much sleep, but she looked good.
It looks now like Gail
It looks now like Gail will go into surgery at 4 or 5 this morning. Then she'll be in the ICU for a day or two.
So far so good.
Sunday, March 16, 2008
The Call! There we were
The Call!
There we were having a bowl of gumbo (me) and a grill cheese sandwich (Gail) when the transplant center called this afternoon.
We drove to UCSF and we are sitting in a room waiting for things to happen.
it could still be a false alarm, but so far so good.
you can send us email at
diphi@baymoon.com
Friday, March 07, 2008
Racing Stripes
And here is a picture of it from the side.
I haven't chosen to give it a name yet. Any suggestions?
I haven't chosen to give it a name yet. Any suggestions?
MINI at the Beach
Look what I got!!
It's red! It's cute! It's just like my Vespa except I can drive it in the rain and it won't give me "hat hair!"
I'm a happy camper!
It's red! It's cute! It's just like my Vespa except I can drive it in the rain and it won't give me "hat hair!"
I'm a happy camper!
Wednesday, February 27, 2008
Good Bad Good
Good: The dialysis center runs a fairly extensive blood panel on Gail every month, and her bloodwork continues to be very good. Her calcium and phosphorous and iron and all that stuff is in the normal range.
Bad: She is getting more and more tired all the time. Part of it is mental; it's hard to be waiting all the time month after month. But I think it is mostly physical; machines can't fully replace two functioning kidneys. I try to encourage her to come home early and take an occasional day off from work, but she worries about not having enough leave time at work to cover her surgery and recuperation.
Good: I don't know what our horoscopes would say, but we have been graced with the reappearance in our lives of a number of old friends. At a 70th birthday party for a friend, a whole group of us got together for the first time in years. Lots of changes have happened since we last had seen each other. Several of us were single again, two were in wheelchairs, Gail on dialysis, one with a son in prison, one with a newly minted law degree, several retired, and all of us glad to see each other again. And, to add sweetness onto sweetness, we have also made contact with some long lost dear friends from Aikido.
Somehow we lost contact with these beloved people because of some temporary friction or unpleasantness. But all that is lost in the past now, and doesn't even make an appearance. All that remains is very sweet, and it is very good.
Bad: She is getting more and more tired all the time. Part of it is mental; it's hard to be waiting all the time month after month. But I think it is mostly physical; machines can't fully replace two functioning kidneys. I try to encourage her to come home early and take an occasional day off from work, but she worries about not having enough leave time at work to cover her surgery and recuperation.
Good: I don't know what our horoscopes would say, but we have been graced with the reappearance in our lives of a number of old friends. At a 70th birthday party for a friend, a whole group of us got together for the first time in years. Lots of changes have happened since we last had seen each other. Several of us were single again, two were in wheelchairs, Gail on dialysis, one with a son in prison, one with a newly minted law degree, several retired, and all of us glad to see each other again. And, to add sweetness onto sweetness, we have also made contact with some long lost dear friends from Aikido.
Somehow we lost contact with these beloved people because of some temporary friction or unpleasantness. But all that is lost in the past now, and doesn't even make an appearance. All that remains is very sweet, and it is very good.
Thursday, February 21, 2008
We're Number 1!
We talked to our transplant coordinator yesterday, and he said there has been a little movement on the list. A man got called for a transplant yesterday, and once his transplant happens, Gail will be number one on the regional list.
Now you may have thought she was already #1 on the list. Well, she was at the top...among the handfull of people at the top of the list. But now, she really is the first name; assuming the other transplant happened.
So, my little statistician brain tells me, if they did 19 kidney/pancreas transplants all last year, and Gail's blood type (A) is 34% of the population in the US, then...ticka ticka tocka...she would be an appropriate recipient for 6.5 transplants a year, which is ... one about every two months.
So, statistically speaking (aka: having nothing to do with the real world), she should get a call in two months, which would be in the end of April, which would really comply with the Principal of Inconvenience. That alone give great credence to my prognostication!
However, there are few things in the world quite as random as the availability of organs, so we'll keep our suitcases packed and ready.
Now you may have thought she was already #1 on the list. Well, she was at the top...among the handfull of people at the top of the list. But now, she really is the first name; assuming the other transplant happened.
So, my little statistician brain tells me, if they did 19 kidney/pancreas transplants all last year, and Gail's blood type (A) is 34% of the population in the US, then...ticka ticka tocka...she would be an appropriate recipient for 6.5 transplants a year, which is ... one about every two months.
So, statistically speaking (aka: having nothing to do with the real world), she should get a call in two months, which would be in the end of April, which would really comply with the Principal of Inconvenience. That alone give great credence to my prognostication!
However, there are few things in the world quite as random as the availability of organs, so we'll keep our suitcases packed and ready.
Tuesday, February 19, 2008
New Dryer
Our old clothes dryer that we bought at a garage sale 20 years ago has finally started wheezing instead of drying. Time to replace it! We stop in Sears and choose a nice gas dryer to be delivered today.
At home, Robin is puzzled about our choice. He doesn't remember seeing a gas line in the laundry room. We dismissively assure him that it is a gas dryer; nobody in Santa Cruz would ever have an electric dryer because they are so expensive.
He considers our firm and unequivocable response and doesn't say anything else, because his mama didn't raise no fool.
Today the new dryer is delivered, and the set-up guy points out that we do not have a gas line in the laundry room.
Gail and I are baffled; Robin is galantly trying to control his snarky smirks.
And I call Sears to request a replacement dryer of the electric persuasion, to be delivered in a day or two.
It is simply amazing to me how two ostensibly intelligent people can so firmly believe something to be true in the face of overwhelming evidence to the contrary.
There's probably a lesson in this somewhere, but who has time to think about it?
I need to go read some information proving that gay marriage will be the end of civilization.
At home, Robin is puzzled about our choice. He doesn't remember seeing a gas line in the laundry room. We dismissively assure him that it is a gas dryer; nobody in Santa Cruz would ever have an electric dryer because they are so expensive.
He considers our firm and unequivocable response and doesn't say anything else, because his mama didn't raise no fool.
Today the new dryer is delivered, and the set-up guy points out that we do not have a gas line in the laundry room.
Gail and I are baffled; Robin is galantly trying to control his snarky smirks.
And I call Sears to request a replacement dryer of the electric persuasion, to be delivered in a day or two.
It is simply amazing to me how two ostensibly intelligent people can so firmly believe something to be true in the face of overwhelming evidence to the contrary.
There's probably a lesson in this somewhere, but who has time to think about it?
I need to go read some information proving that gay marriage will be the end of civilization.
Monday, February 11, 2008
Endocrinology
Because we have been expecting the call from the transplant center "any day now" (for the last year), Gail has not wanted to make an appointment with her endocrinologist (her diabetes doctor). I finally bullied her into it, and we went this morning.
He was fairly gracious about someone showing up out of nowhere after 16 months of absence with no lab work and having lost a glucose monitor. He wants her to meet with the diabetic educator to do a three day sensitivity test to get her insulin pump calibrated correctly. This is a very very good thing for her to do. Her blood sugars have been all over the place, and we have not calibrated the pump since she went on dialysis. It is a difficult three day test where you have to fast a lot and wake up in the middle of the night to test your blood sugar. The idea is that you need to see how much insulin your body needs on its own; then you figure out how much you need to add when you eat something. She hasn't done one of these since she went on the pump a number of years ago. And it makes sense that it would be affected by being on dialysis, but we don't know how.
But Gail is a stubborn, obstinate monkey, and just can't see why she needs to keep seeing him since she won't be a diabetic anymore once she gets the transplant.
I hate it when we act so stereotypical. Humans are just silly.
He was fairly gracious about someone showing up out of nowhere after 16 months of absence with no lab work and having lost a glucose monitor. He wants her to meet with the diabetic educator to do a three day sensitivity test to get her insulin pump calibrated correctly. This is a very very good thing for her to do. Her blood sugars have been all over the place, and we have not calibrated the pump since she went on dialysis. It is a difficult three day test where you have to fast a lot and wake up in the middle of the night to test your blood sugar. The idea is that you need to see how much insulin your body needs on its own; then you figure out how much you need to add when you eat something. She hasn't done one of these since she went on the pump a number of years ago. And it makes sense that it would be affected by being on dialysis, but we don't know how.
But Gail is a stubborn, obstinate monkey, and just can't see why she needs to keep seeing him since she won't be a diabetic anymore once she gets the transplant.
I hate it when we act so stereotypical. Humans are just silly.
Wednesday, February 06, 2008
Voting
Like the good citizens we are, Gail and I both voted on Tuesday. For the first time in our 25 years together, we split our vote. But we don't care, because we know we'll be united in November when it really counts.
Because it was such a momentous event, I voted with Gail at our regular precinct, rather than just voting downstairs at the Elections Office. When we walked out together, Gail was just beaming. I asked her why, and she said she felt like she had just taken communion, all holy and virtuous.
She is so cute.
Sunday, February 03, 2008
Cheryl and Joe
This is the introduction I gave for Cheryl at the awards.
“Somehow it has all added up to song.”
That line, from The Peace of Wild Things, the work Cheryl conducted with us in Carnegie Hall, pretty much sums up Cheryl Anderson: But other songs can add to this story.
In Aaron Copeland’s The Tenderland, we sang “The promise of living, the promise of growing is labor, and sharing, and loving.”
Cheryl is an alchemist: it is her life’s work to turn lead into gold, to transmute the common into the extraordinary. The gold she creates is music brought to life; the common material she is transmuting is us, her singers. That transformation happens through her labor, her sharing, and her loving.
It takes a lot of labor to do what Cheryl does. As a matter of fact, most people think that Cantiamo is Italian for “Let’s sing.” Actually, it means “You’ll work harder than you ever thought you could!” We have decided that the Cantiamo motto is “Nos mos somnus ut nos es mortuus:” We’ll sleep when we’re dead.” But we don’t mind working that hard because first of all, we know Cheryl is working harder than we are, and because she shares with us her deep love and passion for the music we are creating.
In The Rune of Hospitality, we sang “I saw a stranger yestere’en: I put food in the eating place, Drink in the drinking place, music in the list’ning place, and he blessed myself and my dear ones.”
These words remind me that Cheryl loves to party, and dance, and eat great food, and have a wonderful time with her friends. We have closed down more restaurants in more cities than I can remember; we have sung more 20-part, no-melody happy birthdays to strangers at adjoining tables than I can count, and when Cheryl is around, we are always the last table to clear out after a wedding party, a bat mitzvah, a post-concert celebration or, well, after anything actually. If the song had included putting shoes in the shopping place and hound dogs in the howling place, it would have really described Cheryl.
But as fun as she is, the real reason we love her, the reason we would walk over broken glass to sing for her, is because she makes us better than we think we can be.
Harry Kemp wrote “But chief of all thy wondrous works, supreme of all thy plan, thou has put an upward reach into the heart of man.”
That’s what Cheryl has done for us. She has taken a bunch of little kids and students, teachers and doctors and the occasional bureaucrat and turned us into singers who perform at Carnegie Hall. She opened our hearts to dreams we didn’t dare dream, and she helped us make those dreams come true.
“Somehow it has all added up to song.”
Ladies and gentlemen, it is my honor to present Cheryl Anderson.
“Somehow it has all added up to song.”
That line, from The Peace of Wild Things, the work Cheryl conducted with us in Carnegie Hall, pretty much sums up Cheryl Anderson: But other songs can add to this story.
In Aaron Copeland’s The Tenderland, we sang “The promise of living, the promise of growing is labor, and sharing, and loving.”
Cheryl is an alchemist: it is her life’s work to turn lead into gold, to transmute the common into the extraordinary. The gold she creates is music brought to life; the common material she is transmuting is us, her singers. That transformation happens through her labor, her sharing, and her loving.
It takes a lot of labor to do what Cheryl does. As a matter of fact, most people think that Cantiamo is Italian for “Let’s sing.” Actually, it means “You’ll work harder than you ever thought you could!” We have decided that the Cantiamo motto is “Nos mos somnus ut nos es mortuus:” We’ll sleep when we’re dead.” But we don’t mind working that hard because first of all, we know Cheryl is working harder than we are, and because she shares with us her deep love and passion for the music we are creating.
In The Rune of Hospitality, we sang “I saw a stranger yestere’en: I put food in the eating place, Drink in the drinking place, music in the list’ning place, and he blessed myself and my dear ones.”
These words remind me that Cheryl loves to party, and dance, and eat great food, and have a wonderful time with her friends. We have closed down more restaurants in more cities than I can remember; we have sung more 20-part, no-melody happy birthdays to strangers at adjoining tables than I can count, and when Cheryl is around, we are always the last table to clear out after a wedding party, a bat mitzvah, a post-concert celebration or, well, after anything actually. If the song had included putting shoes in the shopping place and hound dogs in the howling place, it would have really described Cheryl.
But as fun as she is, the real reason we love her, the reason we would walk over broken glass to sing for her, is because she makes us better than we think we can be.
Harry Kemp wrote “But chief of all thy wondrous works, supreme of all thy plan, thou has put an upward reach into the heart of man.”
That’s what Cheryl has done for us. She has taken a bunch of little kids and students, teachers and doctors and the occasional bureaucrat and turned us into singers who perform at Carnegie Hall. She opened our hearts to dreams we didn’t dare dream, and she helped us make those dreams come true.
“Somehow it has all added up to song.”
Ladies and gentlemen, it is my honor to present Cheryl Anderson.
Monday, January 28, 2008
Door Mat
I came into my office last week and found this doormat, a gift from another canine-loving friend of mine. I think it adds quite a bit of class to the office!
Tuesday, January 22, 2008
Gail and Beau
Our friends adopted 3 (!!!) little two-month old Blue Tick Coonhounds! I can't imagine anything sweeter in the world. They are all legs and ears, and they haven't figured out how to use their legs very well yet. In honor of the Louisiana heritage of Blue Ticks, they are named Beauregard, Savannah, and Julep.
We spent several hours just sitting and holding them, smelling their puppy-breath, and playing with their ears. Those are probably among the best hours of any of our lives.
We spent several hours just sitting and holding them, smelling their puppy-breath, and playing with their ears. Those are probably among the best hours of any of our lives.
Tuesday, January 15, 2008
Where in the World?
There is a cool web site where you can check off all the countries you've visited, and it will map them for you. Now this is an anal-compulsive travelor's dream-site!
I checked all my countries, and the map is pretty impressive. It is misleading, though, because the whole country shows up even if you've only been to one part. I've been to parts of both Canada and Russia, and it looks like I have traveled the entire top tier of the world.
Clearly, I need to head south of the equator! Just as soon as we get Gail's spare parts installed!!
You can fill in your map here:
http://www.world66.com/
Now where do YOU want to go?
I checked all my countries, and the map is pretty impressive. It is misleading, though, because the whole country shows up even if you've only been to one part. I've been to parts of both Canada and Russia, and it looks like I have traveled the entire top tier of the world.
Clearly, I need to head south of the equator! Just as soon as we get Gail's spare parts installed!!
You can fill in your map here:
http://www.world66.com/
Now where do YOU want to go?
Saturday, January 12, 2008
Dinah Shore
I actually was named for her. My mom was in bed listening to the radio with my dad when she started having contractions. The story goes that Dinah was singing when my mom's water broke, so they named me after her.
Personally, I liked Carol Burnett a lot better!
Personally, I liked Carol Burnett a lot better!
Dinah
My name has always been a trial. People always are confused...Dina? Donna? Diana? Dana?
For many years, I could say, " Like Dinah Shore," and people would know who I was talking about. But all good things come to an end, apparently.
Yesterday, I was talking to a guy who looked to be in his 30's, and he was asking how to spell my name. When I gave him my standard response, it got no traction with hims whatsoever. He had no idea who Dinah Shore was.
I reminded him that she used to date Burt Reynolds, and he said, "Who didn't?"
I could feel my life dripping out between my fingers.
For many years, I could say, " Like Dinah Shore," and people would know who I was talking about. But all good things come to an end, apparently.
Yesterday, I was talking to a guy who looked to be in his 30's, and he was asking how to spell my name. When I gave him my standard response, it got no traction with hims whatsoever. He had no idea who Dinah Shore was.
I reminded him that she used to date Burt Reynolds, and he said, "Who didn't?"
I could feel my life dripping out between my fingers.
Wednesday, January 09, 2008
UCSF Again
We went to UCSF on Monday to see the surgeons again. Everything was fine, and it was pretty much the formality that we expected it to be.
We saw Dr. Hirose again, and he did tell us one interesting thing. The US is divided up into regions, and each region gets organs within its region and disburses them to residents of its region. But, if a kidney patient is a perfect match of all six factors, that patient gets the kidney no matter what region the organ or the recipient is in. Which is good for the recipient. But, the transplant center that gets the organ has to donate another organ back into the national system. Somehow over the past year or so, UCSF has developed an organ debt, so they have had to give up some organs that were procured in their region.
Because of this, UCSF only did 19 kidney/pancreas transplants last year, when they usually do about 30. That probably kept Gail from getting called.
Dr. Hirose thinks this is not fair and disadvantages his patients. He is trying to get this system changed.
I don't think Gail was particularly upset by this. Both of us were just relieved to learn more about the process. And it does provide a better answer to why she hasn't been called yet. So that is good.
When we left UCSF, we both felt like it may be another year before she gets her transplant. We mentioned that people had suggested that we move to other regions where the waiting list for new organs are shorter. He thought about it, and said that he thinks we should stay here. Another transplant center might not take her because of her age, so he thinks it is better for us to stay with UCSF, which we are happy to do. He said if we were waiting for a liver transplant, though, he would recommend that we move to another region. That was pretty shocking. I guess because without a replacement liver, you die. Whereas with kidney failure, you just go on dialysis.
We have never seriously considered moving; but it was interesting to get more information about it.
We met her new nephrologist today, and we liked him a lot. It sounds like he will be following her mainly by seeing her at the dialysis center, which will be good for her. But it means I won't be there as much and may not know as much about what is going on. But I guess that is OK.
He asked her why she wasn't doing peritoneal dialysis. She hasn't considered it because a transplant has been immanent for the last 13 months. If she doesn't get a transplant in time, I guess that will be an option for her. But we are still hoping for the transplant.
We saw Dr. Hirose again, and he did tell us one interesting thing. The US is divided up into regions, and each region gets organs within its region and disburses them to residents of its region. But, if a kidney patient is a perfect match of all six factors, that patient gets the kidney no matter what region the organ or the recipient is in. Which is good for the recipient. But, the transplant center that gets the organ has to donate another organ back into the national system. Somehow over the past year or so, UCSF has developed an organ debt, so they have had to give up some organs that were procured in their region.
Because of this, UCSF only did 19 kidney/pancreas transplants last year, when they usually do about 30. That probably kept Gail from getting called.
Dr. Hirose thinks this is not fair and disadvantages his patients. He is trying to get this system changed.
I don't think Gail was particularly upset by this. Both of us were just relieved to learn more about the process. And it does provide a better answer to why she hasn't been called yet. So that is good.
When we left UCSF, we both felt like it may be another year before she gets her transplant. We mentioned that people had suggested that we move to other regions where the waiting list for new organs are shorter. He thought about it, and said that he thinks we should stay here. Another transplant center might not take her because of her age, so he thinks it is better for us to stay with UCSF, which we are happy to do. He said if we were waiting for a liver transplant, though, he would recommend that we move to another region. That was pretty shocking. I guess because without a replacement liver, you die. Whereas with kidney failure, you just go on dialysis.
We have never seriously considered moving; but it was interesting to get more information about it.
We met her new nephrologist today, and we liked him a lot. It sounds like he will be following her mainly by seeing her at the dialysis center, which will be good for her. But it means I won't be there as much and may not know as much about what is going on. But I guess that is OK.
He asked her why she wasn't doing peritoneal dialysis. She hasn't considered it because a transplant has been immanent for the last 13 months. If she doesn't get a transplant in time, I guess that will be an option for her. But we are still hoping for the transplant.
Saturday, January 05, 2008
Weirdly Wrapped
The surprise package turned out to be this wonderful industrial strength juicer! It made a great bird, huh?
Wrapping Weirdness
This was one of the presents from Robin and Sachi. Neither of us had any idea what could be inside this weird bird!
Coughing in the New Year
After my last posting, Gail and I both got really sick. We had already planned to take the first week in January off because we badly needed a vacation. Unfortunately, we were both too sick to do anything but stay in bed and sleep. I hate wasting vacation days being sick.
She got so bad that I took her into Urgent Care yesterday, during the worst rain and wind storm in years. We saw a doctor who is a friend of ours, who is very good and kind. He sent her for a chest x-ray, and it looks like she may have been developing pneumonia. He gave her some high-powered antibiotics, and she felt much much better this morning.
I was so sick that I didn't go into the EOC during the rain storm. Chris went in my stead and did a great job. Thank goodness!
We have an appointment to go to UCSF Monday to meet with the surgeons again. We don't expect any difficulty. She is still a good candidate for a transplant, so we think it will be pretty much a formality.
She got so bad that I took her into Urgent Care yesterday, during the worst rain and wind storm in years. We saw a doctor who is a friend of ours, who is very good and kind. He sent her for a chest x-ray, and it looks like she may have been developing pneumonia. He gave her some high-powered antibiotics, and she felt much much better this morning.
I was so sick that I didn't go into the EOC during the rain storm. Chris went in my stead and did a great job. Thank goodness!
We have an appointment to go to UCSF Monday to meet with the surgeons again. We don't expect any difficulty. She is still a good candidate for a transplant, so we think it will be pretty much a formality.
Friday, December 28, 2007
Valient Effort
I tried, I really tried.
I went yesterday to donate blood again. I'm O negative, and that is a useful blood type, so I try to donate regularly. The last three times I have tried, I was just slightly too anemic to donate. I've been taking iron supplements so that I could donate. So when I went in yesterday, I was still under the count the first time they checked it. But another nurse came in and tried again on a different finger, and I was OK.
Unfortunately, when I laid in the chair to donate, they couldn't get the needle in the right place. They kept moving it around and pulling it in and out. Finally they gave up and tried the other arm, which isn't as good as the first one. I was a brave trooper, and told them to keep trying.
They finally got the needle in, and it looked OK, but the blood wasn't coming out at a fast enough flow. After 10 minutes, they only had 200 units, and it had slowed to a trickle. So they pulled it out and we gave up for this time. The worst thing is that they can't use it if it is less than 650 units, so the whole thing was a waste of time and energy.
As they were poking around, I kept thinking about Gail and all the people on dialysis and how my momentary pain was so miniscule compared to what they go through day after day. I was still very disappointed that none of it worked.
Wait till next time!!
I went yesterday to donate blood again. I'm O negative, and that is a useful blood type, so I try to donate regularly. The last three times I have tried, I was just slightly too anemic to donate. I've been taking iron supplements so that I could donate. So when I went in yesterday, I was still under the count the first time they checked it. But another nurse came in and tried again on a different finger, and I was OK.
Unfortunately, when I laid in the chair to donate, they couldn't get the needle in the right place. They kept moving it around and pulling it in and out. Finally they gave up and tried the other arm, which isn't as good as the first one. I was a brave trooper, and told them to keep trying.
They finally got the needle in, and it looked OK, but the blood wasn't coming out at a fast enough flow. After 10 minutes, they only had 200 units, and it had slowed to a trickle. So they pulled it out and we gave up for this time. The worst thing is that they can't use it if it is less than 650 units, so the whole thing was a waste of time and energy.
As they were poking around, I kept thinking about Gail and all the people on dialysis and how my momentary pain was so miniscule compared to what they go through day after day. I was still very disappointed that none of it worked.
Wait till next time!!
Thursday, December 27, 2007
Christmas Baskets
We got the last of the Christmas baskets delivered last night! Hooray! We are doing better than last year, when a few of the baskets just never got delivered. They rode around in the back of the car getting more and more neglected and bedraggled.
Now we can put our suitcases back in the car for the imminent trip to UCSF.
Now we can put our suitcases back in the car for the imminent trip to UCSF.
Wednesday, December 26, 2007
Shift Happens
All the insurance issues are worked out, so now we are just waiting again for the call. I told Gail that I was surprised they hadn't called yet this morning. See, they called us the day after Thanksgiving, so I figure they will call us the day after Christmas this time. So, any minute now.
We sang for two services on Christmas Eve. At the second one, Dave preached such a wonderful sermon; I was in tears through the whole thing. I think the stress and fear is getting to me a little. People are so sweet and solicitous about me, and I always assure them that I am doing fine. I tell them that my worst day is still better than the best day Gail has on dialysis.
But there are occasional moments when I can put my shield down for a few minutes and actually feel how scared I am. It says a lot about FCC that I feel safe enough there to allow those feelings to come up.
Later that night, about 3:30, Gail woke up having a bad insulin reaction. She wasn't doing very well, so I got up and got her testing kit. By the time I got her tested, her blood sugar level was 56 or 59, which isn't too bad. But she was pretty out of it.
Then Tizzie, who was sleeping in her crate, started whimpering to go outside. I took her downstairs and she RAN outside to do her business. When she came back in, she didn't want to go back in the crate, and I realized she'd had an accident in there. Clearly the result of the big delicious barbeque beef ribs the pups had enjoyed earlier in the day. She continued to have effluence from both ends of her alimentary canal for the next hour or so. As a result, I was awake from about 3:30 until about 6:00.
After we dragged ourselves up in the morning, Gail and I took the pups to Lighthouse Field to drain some energy off them before we opened presents. Tizzie had another accident in the car (thank goodness for the hammock we put back there for them to ride in!). We pulled over to the side of the road and were trying to clean up the worst of it. A woman was walking by, and she suddenly greeted us, and it was our friend Laurie whom we haven't seen in years, and whom we have been trying to get together with! If Tizzie hadn't had her little problem, we wouldn't have seen Laurie at all! It was just great to see her!
It just goes to show; even the shittiest situations can have a wonderful result!
May all your shitty situations turn out wonderful in 2008!!
We sang for two services on Christmas Eve. At the second one, Dave preached such a wonderful sermon; I was in tears through the whole thing. I think the stress and fear is getting to me a little. People are so sweet and solicitous about me, and I always assure them that I am doing fine. I tell them that my worst day is still better than the best day Gail has on dialysis.
But there are occasional moments when I can put my shield down for a few minutes and actually feel how scared I am. It says a lot about FCC that I feel safe enough there to allow those feelings to come up.
Later that night, about 3:30, Gail woke up having a bad insulin reaction. She wasn't doing very well, so I got up and got her testing kit. By the time I got her tested, her blood sugar level was 56 or 59, which isn't too bad. But she was pretty out of it.
Then Tizzie, who was sleeping in her crate, started whimpering to go outside. I took her downstairs and she RAN outside to do her business. When she came back in, she didn't want to go back in the crate, and I realized she'd had an accident in there. Clearly the result of the big delicious barbeque beef ribs the pups had enjoyed earlier in the day. She continued to have effluence from both ends of her alimentary canal for the next hour or so. As a result, I was awake from about 3:30 until about 6:00.
After we dragged ourselves up in the morning, Gail and I took the pups to Lighthouse Field to drain some energy off them before we opened presents. Tizzie had another accident in the car (thank goodness for the hammock we put back there for them to ride in!). We pulled over to the side of the road and were trying to clean up the worst of it. A woman was walking by, and she suddenly greeted us, and it was our friend Laurie whom we haven't seen in years, and whom we have been trying to get together with! If Tizzie hadn't had her little problem, we wouldn't have seen Laurie at all! It was just great to see her!
It just goes to show; even the shittiest situations can have a wonderful result!
May all your shitty situations turn out wonderful in 2008!!
Wednesday, December 19, 2007
Nerd heaven!
Gail has talked to the insurance people, and we believe that she is back on the active transplant list. We both think we will get another offer soon.
BTW, we don't just sit around thinking about the transplant all day everyday!
For your information, I am about half-way through War and Peace! And, believe it or not, I am loving it. The new translation is wonderful. I had no idea it would be a funny as it is. It reminds me of Jane Austen in its wry look at society's foibles.
I am very anal-compulsive about it, because it is such a beautiful hardback book. I have a book cover on it to protect the binding, which is good because the thing weighs about 40 pounds and is rather difficult to cart around.
And (nerd alert!!), I ordered some little brass page points from Levinger so I can mark the passages I find particularly delightful without writing on the pages. So much more civilized than post-it's, doncha know!
Heaven!!
BTW, we don't just sit around thinking about the transplant all day everyday!
For your information, I am about half-way through War and Peace! And, believe it or not, I am loving it. The new translation is wonderful. I had no idea it would be a funny as it is. It reminds me of Jane Austen in its wry look at society's foibles.
I am very anal-compulsive about it, because it is such a beautiful hardback book. I have a book cover on it to protect the binding, which is good because the thing weighs about 40 pounds and is rather difficult to cart around.
And (nerd alert!!), I ordered some little brass page points from Levinger so I can mark the passages I find particularly delightful without writing on the pages. So much more civilized than post-it's, doncha know!
Heaven!!
Tuesday, December 18, 2007
Good to Go
The news from UCSF is good. Our transplant coordinator took the angiogram results into the meeting of the Board of Surgeons. They pronounced it good, and said they don't even need to see Gail again. The coordinator sent a letter to the insurance company telling them that the surgeons had approved her for transplant. So as soon as the insurance company acts, she'll be back on the list.
We are both thinking that we will get the call soon. Last night at church choir rehearsal, we were all going over the dates and call times for the next couple of weeks, and both of us feel like there is a good chance we won't be here for some portion of those services.
A very nice couple from back east visiting their son have been singing with us for the last month or so. They will leave to go back home after Christmas. Last night, they gave Gail a beautiful hand knitted prayer shawl to keep her warm. It was so sweet and thoughtful of them. We are so touched by the love and generosity people show us all the time.
And our friend Genevieve is undergoing her transplant while I am writing this post! Her sister donated a kidney to her, and her operation was scheduled for today! I thought of her first thing this morning, and have been thinking about her all day!
Our fingers are crossed for all of us!
We are both thinking that we will get the call soon. Last night at church choir rehearsal, we were all going over the dates and call times for the next couple of weeks, and both of us feel like there is a good chance we won't be here for some portion of those services.
A very nice couple from back east visiting their son have been singing with us for the last month or so. They will leave to go back home after Christmas. Last night, they gave Gail a beautiful hand knitted prayer shawl to keep her warm. It was so sweet and thoughtful of them. We are so touched by the love and generosity people show us all the time.
And our friend Genevieve is undergoing her transplant while I am writing this post! Her sister donated a kidney to her, and her operation was scheduled for today! I thought of her first thing this morning, and have been thinking about her all day!
Our fingers are crossed for all of us!
Monday, December 17, 2007
Waiting for the surgeons
The cardiologist has faxed a copy of the outstanding angiogram to the Board of Surgeons at the Transplant Center. Our coordinator is giving the information to the surgeons this morning. We are hoping that the surgeons will recommend to the insurance company that Gail be reinstated on the active list. We are scheduled to see them again on January 7th, but we want her to be on the list between now and then.
The coordinator will call back today (hopefully) and let us know what they say.
The coordinator will call back today (hopefully) and let us know what they say.
Wednesday, December 12, 2007
Sleeping it off after the angiogram
Here's a photo of Gail right after the angiogram. Very peaceful and relieved.
Monday, December 10, 2007
Angiogram A OK
The doc just came in and told me that everything was fine. He didn't have to do anything! This is the best news we could have hoped for.
Hopefully this means that she will stay on the active transplant list through the holidays.
She slept for a while at the hospital, and we just got home.
OK, so far, I've gotten all my wishes. So I guess we get the transplant call tomorrow!
Hopefully this means that she will stay on the active transplant list through the holidays.
She slept for a while at the hospital, and we just got home.
OK, so far, I've gotten all my wishes. So I guess we get the transplant call tomorrow!
Angiogram
So things are a little bolloxed up. It has been a year since Gail started doing dialysis, since she got the cardiac catheter installed, and since she has been active on the transplant list. Now her insurance company is requiring her to undergo the same tests she did last year before they will authorize the transplant.
The only test she is worried about is the angiogram. When she had it last year, she had a little narrowing of one of the blood vessels in her heart and they did a minor balloon angioplasty. That kept her off the active transplant list for a couple of months, mainly because they used Plavix during the antioplasty. She also says that the angiogram was, if not painful, then at least uncomfortable. She remembers feeling the little tube thing moving around in her heart.
So tomorrow morning she is going in for the angiogram.
She is a little afraid of the discomfort. She is afraid that another year of being a diabetic may have done more damage to her heart. She is afraid that she will be off the transplant list for the two months which will include the end of December and the beginning of January, when more organs become available. Since we have already received one offer from the transplant center, it would be particularly hard to be taken off the active list now.
I am hopeful that everything will be fine tomorrow, that they won't have to do anything more than the angiogram, that we will be home tomorrow afternoon, and that they will call with a transplant on Tuesday.
Keep those thoughts and prayers coming!
The only test she is worried about is the angiogram. When she had it last year, she had a little narrowing of one of the blood vessels in her heart and they did a minor balloon angioplasty. That kept her off the active transplant list for a couple of months, mainly because they used Plavix during the antioplasty. She also says that the angiogram was, if not painful, then at least uncomfortable. She remembers feeling the little tube thing moving around in her heart.
So tomorrow morning she is going in for the angiogram.
She is a little afraid of the discomfort. She is afraid that another year of being a diabetic may have done more damage to her heart. She is afraid that she will be off the transplant list for the two months which will include the end of December and the beginning of January, when more organs become available. Since we have already received one offer from the transplant center, it would be particularly hard to be taken off the active list now.
I am hopeful that everything will be fine tomorrow, that they won't have to do anything more than the angiogram, that we will be home tomorrow afternoon, and that they will call with a transplant on Tuesday.
Keep those thoughts and prayers coming!
Wednesday, December 05, 2007
She's tired
I came to pick her up after dialysis yesterday and got there about 35 minutes before she was done. She was fast asleep in her chair with her sweatshirt and her blanket over her. I left to get her a replacement pillow, and when I returned about 25 minutes later she was still asleep. She stayed asleep until her time was up and the buzzer went off.
She said it makes her feel like an invalid to wake up and see me there, but I like it. I feel like I am on guard, allowing her to safely rest. It feels very peaceful to me.
I have graduated. Now the nurses will let me stay near her chair while they take her off the machine. I guess they know that I'm not going to faint or do anything that would endanger her. I like that too. It's nice to be trusted.
She said it makes her feel like an invalid to wake up and see me there, but I like it. I feel like I am on guard, allowing her to safely rest. It feels very peaceful to me.
I have graduated. Now the nurses will let me stay near her chair while they take her off the machine. I guess they know that I'm not going to faint or do anything that would endanger her. I like that too. It's nice to be trusted.
Tuesday, December 04, 2007
Soon?
One of the nurses at Gail's dialysis center used to work on a pediatric transplant unit (think a moment about having THAT job!)
As she was taking Gail off the dialysis machine on Saturday, she told us that she thinks we will get called before the new year. As macabre as it is to talk about it, she said it was really evident that the number of organs available for transplant markedly increased during the holiday season. Probably related to increased drinking and driving.
We wish no one to come to harm, but people inevitably will. We only hope that those whose time has come will have already made the decision to donate their organs.
As she was taking Gail off the dialysis machine on Saturday, she told us that she thinks we will get called before the new year. As macabre as it is to talk about it, she said it was really evident that the number of organs available for transplant markedly increased during the holiday season. Probably related to increased drinking and driving.
We wish no one to come to harm, but people inevitably will. We only hope that those whose time has come will have already made the decision to donate their organs.
Monday, December 03, 2007
Feast of Christmas: 25 Years
We went to the 25th Anniversary of Music for the Feast of Christmas last night. It was a lovely concert and a lovely party afterwards. I have sung in the last 20 years worth of concerts, so it felt very strange to be sitting in the audience. Looking up at so many people we have known for so many years, Gail and I agreed that those people up there are our family.
They performed a number of pieces that I have sung in the past, and I was so proud of everyone for doing such a great job. Unless you have sat through a semester's worth of rehearsals, I don't think you can know how much work and effort and time and skill go into putting such a great concert together. I am reminded over and over what a consummate artist Cheryl is and why we would all walk over broken glass for her.
The Youth Chorus also performed in the concert, in honor of the 25th Anniversary, and they were terrific. At the party afterwards, a bunch of little girls in their concert finery were playing around on the dance floor in the middle of the room. I was MCing the party, and they just stayed there like a little mosh pit full of twittering blackbirds. They swirled around the floor following the microphone around as we interviewed long-time members of the chorus and sang Happy 80th Birthday to Iris. They they just hung on to Cheryl while she talked and thanked everyone. So we had 8 years olds and 80 years olds, and everyone was happy. Now that is a strong and vibrant community.
Driving home after the party, I asked Gail if she felt loved. She responded that she did indeed feel well and truly loved by so many people there. It made her feel very good. It was a lovely evening.
They performed a number of pieces that I have sung in the past, and I was so proud of everyone for doing such a great job. Unless you have sat through a semester's worth of rehearsals, I don't think you can know how much work and effort and time and skill go into putting such a great concert together. I am reminded over and over what a consummate artist Cheryl is and why we would all walk over broken glass for her.
The Youth Chorus also performed in the concert, in honor of the 25th Anniversary, and they were terrific. At the party afterwards, a bunch of little girls in their concert finery were playing around on the dance floor in the middle of the room. I was MCing the party, and they just stayed there like a little mosh pit full of twittering blackbirds. They swirled around the floor following the microphone around as we interviewed long-time members of the chorus and sang Happy 80th Birthday to Iris. They they just hung on to Cheryl while she talked and thanked everyone. So we had 8 years olds and 80 years olds, and everyone was happy. Now that is a strong and vibrant community.
Driving home after the party, I asked Gail if she felt loved. She responded that she did indeed feel well and truly loved by so many people there. It made her feel very good. It was a lovely evening.
Friday, November 30, 2007
Fortune Telling
Gail and I went to Thailand three or four years ago. We went there because we knew that she would probably be on dialysis at some point, and we wanted to visit some of the harder places before that happened.
On one of our last days there, we were at a Buddhist temple (Wat Phrathat Doi Suthep), and you could crawl on your knees to get a wooden stick with a number on it that would tell you your fortune. Gail declined the offer, but I shook up the little wooden container and chose my well-worn stick. I have had it posted on my wall at work since we got home. It says:
"Getting the last number, it's indicating the prosperity and dignity. You will be happy for ever and ever. Asking about your lover and legal case, please be confident that everything just goes better. You always be supported by benefactors."
Not that I believe in fortunes, but this one I think I'll go with. I am happy and my life is full of joy. I don't think I'll ever ask for another fortune, because this one works for me!
On one of our last days there, we were at a Buddhist temple (Wat Phrathat Doi Suthep), and you could crawl on your knees to get a wooden stick with a number on it that would tell you your fortune. Gail declined the offer, but I shook up the little wooden container and chose my well-worn stick. I have had it posted on my wall at work since we got home. It says:
"Getting the last number, it's indicating the prosperity and dignity. You will be happy for ever and ever. Asking about your lover and legal case, please be confident that everything just goes better. You always be supported by benefactors."
Not that I believe in fortunes, but this one I think I'll go with. I am happy and my life is full of joy. I don't think I'll ever ask for another fortune, because this one works for me!
Thursday, November 29, 2007
Blood pressure
Gail gets dialysis at a center that is close to our house, so I have felt OK about letting her drive herself home when I can't pick her up because of rehearsal. But I like to pick her up when I can, mainly as a way of showing her I love her.
Usually she drops me off on her way to work, and I get someone to drop me off at the dialysis center after work. That way I can drive her car home. This Tuesday we didn't get it together, so I had my car at work. When the day was done, I left my car at work and got a ride to dialysis. She was very surprised to see me there, but I think she was glad for the company.
When she is finished with the dialysis, they always take her standing blood pressure one more time to be sure she is OK to go. It is supposed to be at least 100 for her to be released.
This time we couldn't get her blood pressure up. It started out in around 70 over 40, then moved up into the low 80s. She walked around, she drank some water, we mentioned George Bush. Nothing worked. Finally, at 84 over whatever, they let her go because she was asymptomatic. I'm not sure they would have let her go, or should have let her go, with that blood pressure if she were driving herself. She felt fine and probably would have been OK to drive, but I was really glad I was there anyway. It was just easier and safer for me to drive her.
When I can, I bring her a little sandwich or something to eat in the car after dialysis. She is often very hungry then, and she sits there and very methodically eats while I drive her home. If I don't have something in the car for her, by the time we get home she isn't hungry anymore.
It's amazing what you can incorporate into your life...
Usually she drops me off on her way to work, and I get someone to drop me off at the dialysis center after work. That way I can drive her car home. This Tuesday we didn't get it together, so I had my car at work. When the day was done, I left my car at work and got a ride to dialysis. She was very surprised to see me there, but I think she was glad for the company.
When she is finished with the dialysis, they always take her standing blood pressure one more time to be sure she is OK to go. It is supposed to be at least 100 for her to be released.
This time we couldn't get her blood pressure up. It started out in around 70 over 40, then moved up into the low 80s. She walked around, she drank some water, we mentioned George Bush. Nothing worked. Finally, at 84 over whatever, they let her go because she was asymptomatic. I'm not sure they would have let her go, or should have let her go, with that blood pressure if she were driving herself. She felt fine and probably would have been OK to drive, but I was really glad I was there anyway. It was just easier and safer for me to drive her.
When I can, I bring her a little sandwich or something to eat in the car after dialysis. She is often very hungry then, and she sits there and very methodically eats while I drive her home. If I don't have something in the car for her, by the time we get home she isn't hungry anymore.
It's amazing what you can incorporate into your life...
Tuesday, November 27, 2007
She Did It!!
I wandered into the TV room last night where Gail was working on her novel, and I got there right at the moment she submitted her manuscript to NaNoWriMo! They accepted her novel, counted her words, verified that she had, indeed, written a not horrible novel of 50,000-plus words, and declared her a winner!! (Actually, they didn't verify that it was not horrible, but that assumption is part of their working premise.)
In case you're wondering, that is about 126 pages. Think Great Gatsby, or Old Man in the Sea. Not so much War and Peace (thank goodness!).
I'm so proud! And she is awfully proud and happy too!
In case you're wondering, that is about 126 pages. Think Great Gatsby, or Old Man in the Sea. Not so much War and Peace (thank goodness!).
I'm so proud! And she is awfully proud and happy too!
Monday, November 26, 2007
Exhaustion
I don't know why I was so tired today. I went to work, and then left to put together some banners at the church for the upcoming Symphonic Choir concert. Then I just went home and to bed for a long nap. I think I may still be tired from the excitement and let down from the false alarm.
If I get this tired from a false alarm, I'm scared to think how I'll do when the real thing happens.
Gail is finishing her first novel. Yes, she is. She signed up for NaNoWriMo; National Novel Writing Month, where you try your best to write a 50,000 word novel in the month of November. She has more than 45,000 words now, and I am sure she will make it.
She does a lot of the writing while she is at dialysis. I was kidding her that if she went in for the surgery, she should ask for an extension, just for the amount of time she was unconscious!
I think she needs to tell them her story when she submits her novel. Can't you see it now? Poor but plucky woman on dialysis three times a week, undaunted by her crippling illness, successfully completes her novel while she waits for the life-saving transplant! They'll love it!!!
Yes, I am getting the tiniest bit cynical, but it's still funny.
My only claim to fame is that I suggested she participate in NaNoWriMo. You can read more about it here!
http://www.nanowrimo.org/
If I get this tired from a false alarm, I'm scared to think how I'll do when the real thing happens.
Gail is finishing her first novel. Yes, she is. She signed up for NaNoWriMo; National Novel Writing Month, where you try your best to write a 50,000 word novel in the month of November. She has more than 45,000 words now, and I am sure she will make it.
She does a lot of the writing while she is at dialysis. I was kidding her that if she went in for the surgery, she should ask for an extension, just for the amount of time she was unconscious!
I think she needs to tell them her story when she submits her novel. Can't you see it now? Poor but plucky woman on dialysis three times a week, undaunted by her crippling illness, successfully completes her novel while she waits for the life-saving transplant! They'll love it!!!
Yes, I am getting the tiniest bit cynical, but it's still funny.
My only claim to fame is that I suggested she participate in NaNoWriMo. You can read more about it here!
http://www.nanowrimo.org/
Sunday, November 25, 2007
Blessing of the Animals
This was the day for the blessing of the animals at church. Tizi-n-Tichka were very good. They came up with us while we sang the anthem and they were very good while they got blessed. And we gave them some communion bread and juice too.
During the prayer I said that we had been called to SF for a transplant on Friday but it hadn't worked out. I asked for prayers for the person who had died and for the people who received the kidneys and other organs.
Gail said that the transplant people called the dialysis center even before they called us. In a funny way, we are minor players in this opera. It's the doctors and nurses and staff who are the real actors.
We just show up!
During the prayer I said that we had been called to SF for a transplant on Friday but it hadn't worked out. I asked for prayers for the person who had died and for the people who received the kidneys and other organs.
Gail said that the transplant people called the dialysis center even before they called us. In a funny way, we are minor players in this opera. It's the doctors and nurses and staff who are the real actors.
We just show up!
Saturday, November 24, 2007
Aftermath
Today was a little hard after yesterday's false alarm. I think part of it is adrenaline hangover from the excitement and disappointment. We are both sad that the surgery didn't happen, but we felt very loved by our friends who were SO EXCITED!
As we were driving to UCSF, we were telling ourselves all the reasons why we were SO LUCKY to get called now!
1. We got to have Thanksgiving.
2. We still had three days of vacation left.
3. This is a slow time of work for both of us, but especially me.
4. The rest of her face would heal while she is in the hospital!
But it didn't work out that way.
So I guess our lucky day is still coming!!
As we were driving to UCSF, we were telling ourselves all the reasons why we were SO LUCKY to get called now!
1. We got to have Thanksgiving.
2. We still had three days of vacation left.
3. This is a slow time of work for both of us, but especially me.
4. The rest of her face would heal while she is in the hospital!
But it didn't work out that way.
So I guess our lucky day is still coming!!
Friday, November 23, 2007
False Alarm
Well, shoot!
We got everything ready, got loaded in the car, found a friend to come spend the night with the pups, got gas, got cash, drove to San Francisco, and then they called us with the bad news. The surgeon had arrived and examined the organs, and he determined that the pancreas wasn't good enough to transplant.
So we came back home.
But, we are, nonetheless, encouraged. Now we know for sure that Gail is actually at the top of the list and that she can indeed get called any day now. And we know that we can figure out how to get to San Francisco, so that is good, too. And we are willing to wait for a very good pancreas!
We consider this a practice run. Now we know for sure that it is going to happen!
Any day now!
We got everything ready, got loaded in the car, found a friend to come spend the night with the pups, got gas, got cash, drove to San Francisco, and then they called us with the bad news. The surgeon had arrived and examined the organs, and he determined that the pancreas wasn't good enough to transplant.
So we came back home.
But, we are, nonetheless, encouraged. Now we know for sure that Gail is actually at the top of the list and that she can indeed get called any day now. And we know that we can figure out how to get to San Francisco, so that is good, too. And we are willing to wait for a very good pancreas!
We consider this a practice run. Now we know for sure that it is going to happen!
Any day now!
The Call
Hey!!!
I guess David was right when he said it could be any time now, because they just called. We have repacked our little bags and we are headed to UCSF for the transplant!
We plan to get there around 3:00. The surgery will start about midnight. I don't know how much web access I will have, but I'll let you know how things are going as soon as I can!
We're a funny mixture of scared, excited, and determined.
Yikes!!
Dinah
I guess David was right when he said it could be any time now, because they just called. We have repacked our little bags and we are headed to UCSF for the transplant!
We plan to get there around 3:00. The surgery will start about midnight. I don't know how much web access I will have, but I'll let you know how things are going as soon as I can!
We're a funny mixture of scared, excited, and determined.
Yikes!!
Dinah
Thursday, November 22, 2007
Chocolate covered figs stuffed with ganache
Then last night I dipped the little stuffed figs into the chocolate. They were the most successful yet. A few of them were even tempered! Yay!!
Melting chocolate
Tuesday night, I made the ganache and prepared the figs. Then last night I stuffed the figs with the ganache and tempered the chocolate (patience is a virtue, patience is a virtue, patience is a virtue).
Wednesday, November 21, 2007
Macbeth
Toni, Scott, Gail and I went to the opera on Sunday to hear Thomas Hampson sing Macbeth, and sing it he did. This was Toni and Scott's first big fat operatic tragedy, and they totally stepped up to the plate. Verdi's music was wonderful, Hampson was awe-inspiring, and the production was weird and distracting.
The opera had publicity out that Hampson would be available in the lobby after the opera to sign CDs. I stole from her office the photograph with Cheryl and him from 15 years ago and got him to autograph it to her. He was so nice and sweet. He laughed at the picture and said his wife wouldn't let him wear that tie now. What a gracious, gifted man he is.
Afterwards we stopped in El Granada at Cafe Gibralter, which was a fabulous as it was 4 or 5 years ago when Lynda took us there.
It was, all in all, about as perfect as a day could be.
The opera had publicity out that Hampson would be available in the lobby after the opera to sign CDs. I stole from her office the photograph with Cheryl and him from 15 years ago and got him to autograph it to her. He was so nice and sweet. He laughed at the picture and said his wife wouldn't let him wear that tie now. What a gracious, gifted man he is.
Afterwards we stopped in El Granada at Cafe Gibralter, which was a fabulous as it was 4 or 5 years ago when Lynda took us there.
It was, all in all, about as perfect as a day could be.
Monday, November 19, 2007
Boom!
Friday afternoon, I got a call from one of the wonderful women who work with Gail, which is always alarming.
Luckily, it was nothing serious. She and Gail had been at the Farmer's Market, and she had stepped into the bank for a minute. She told me, "Gail was standing up when I left her!" When she came back, Gail was bleeding profusely from her face. She had tripped on a little step and fallen face first to the pavement.
She really skinned up her face from her nose to her lip on the right side. Kind of looks like she is wearing half of a Charlie Chaplain mustache. She also has small scrapes at various places on her nose. It's really visible, poor thing. And it hurts.
And of course, this weekend, she had dialysis, went to a big birthday dinner with lots of people SAturday night, went to an Ensemble Monterey concert in Monterey, sang on the first row in church for a performance of the Handel Te Deum, went to San Francisco for the opera, and had dinner on the way home in Half Moon Bay. So it's not like she could hide in the house till she looked more presentable.
But she remained the trooper she is, and gamely went through her weekend, answering the inevitable questions.
I don't think the fall had anything to do with her other stuff. Doesn't appear to be related to diabetes or dialysis. She just tripped.
A reminder that life isn't fair. If life were even remotely tending towards slightly more fair, I would have fallen instead of her. Which I would gladly have done...
Luckily, it was nothing serious. She and Gail had been at the Farmer's Market, and she had stepped into the bank for a minute. She told me, "Gail was standing up when I left her!" When she came back, Gail was bleeding profusely from her face. She had tripped on a little step and fallen face first to the pavement.
She really skinned up her face from her nose to her lip on the right side. Kind of looks like she is wearing half of a Charlie Chaplain mustache. She also has small scrapes at various places on her nose. It's really visible, poor thing. And it hurts.
And of course, this weekend, she had dialysis, went to a big birthday dinner with lots of people SAturday night, went to an Ensemble Monterey concert in Monterey, sang on the first row in church for a performance of the Handel Te Deum, went to San Francisco for the opera, and had dinner on the way home in Half Moon Bay. So it's not like she could hide in the house till she looked more presentable.
But she remained the trooper she is, and gamely went through her weekend, answering the inevitable questions.
I don't think the fall had anything to do with her other stuff. Doesn't appear to be related to diabetes or dialysis. She just tripped.
A reminder that life isn't fair. If life were even remotely tending towards slightly more fair, I would have fallen instead of her. Which I would gladly have done...
Friday, November 16, 2007
Southern churches
This is probably closer to the church I saw driving to Lorenzo. This church is in Arkansas, but they are all over the place down there. Having grown up with them, I actually have a fond spot in my heart for them.
Thursday, November 15, 2007
Southern churches
The picture in the posting for Nov 16th was originally posted here but it got dropped.
That church is probably similar to the church I saw driving to Lorenzo. This church is in Arkansas, but they are all over the place down there. Having grown up with them, I actually have a fond spot in my heart for them.
That church is probably similar to the church I saw driving to Lorenzo. This church is in Arkansas, but they are all over the place down there. Having grown up with them, I actually have a fond spot in my heart for them.
Lorenzo
Any day now
When I was a kid, we would drive from Lubbock to my mom's hometown in Lorenzo almost every weekend. It's about a 20 mile drive through cotton fields and empty space. One time when we passed one of the region's ubiquitous churches, I started repeating "Jesus" to myself over and over. After a while, I woke up from a dozy stupor and realized that the syllables I was still repeating to myself had lost any meaning. I had to remind myself what those syllables referred to.
The phrase "any day now" is sort of like that now. We have been reassuring ourselves that the transplant call could come "any day now" for so long that the phrase has lost its meaning. We have to shake ourselves to remind us that it truly could be any day now.
Or not.
When I was a kid, we would drive from Lubbock to my mom's hometown in Lorenzo almost every weekend. It's about a 20 mile drive through cotton fields and empty space. One time when we passed one of the region's ubiquitous churches, I started repeating "Jesus" to myself over and over. After a while, I woke up from a dozy stupor and realized that the syllables I was still repeating to myself had lost any meaning. I had to remind myself what those syllables referred to.
The phrase "any day now" is sort of like that now. We have been reassuring ourselves that the transplant call could come "any day now" for so long that the phrase has lost its meaning. We have to shake ourselves to remind us that it truly could be any day now.
Or not.
Wednesday, November 14, 2007
Sleep
Gail had a bad night last night. Insulin reaction around 3:00 am, so she stayed home this morning.
I on the other hand had stayed late trying to reconcile the Kids Choir accounts. Finally got them all balanced. Then played a computer marble game till I staggered to bed around 2:30.
Robin was still awake when I went to bed.
All of our sleeping patterns are disrupted.
Except the pups. They sleep anywhere, anytime. Good role models, not that any of us are learning anything from them.
I on the other hand had stayed late trying to reconcile the Kids Choir accounts. Finally got them all balanced. Then played a computer marble game till I staggered to bed around 2:30.
Robin was still awake when I went to bed.
All of our sleeping patterns are disrupted.
Except the pups. They sleep anywhere, anytime. Good role models, not that any of us are learning anything from them.
Tuesday, November 13, 2007
War and Peace
I've been talking for years about wanting to read War and Peace, and I have finally started it. There is a new translation out and it has gotten very good reviews. So I bit the bullet started it last night.
Guess what? It's pretty funny. Sly and witty funny. Reminds me of Jane Austen. I never expected it to be funny. So there's hope.
I figure I can make good progress on it during Gail's eight to ten hour surgery. Unless I finish reading it before she even gets called. Now THAT would be depressing...
Guess what? It's pretty funny. Sly and witty funny. Reminds me of Jane Austen. I never expected it to be funny. So there's hope.
I figure I can make good progress on it during Gail's eight to ten hour surgery. Unless I finish reading it before she even gets called. Now THAT would be depressing...
Sunday, November 11, 2007
Wretched Robin, Ladies Dinah and Gail
Here we are dressed up in all our regalia! You can see how fabulous the dresses that Gail made are. Not to mention Robin's very fancy pirate shirt!
Pirates
Up this morning to church, where we all agreed that next year we would schedule a Jazz service the morning after Madrigal Dinner so we could all sleep in.
But the most fun part was that we found a stash of pirate eye patches so we all wore them when we processed into the sanctuary. It was really fun.
I'm sure we were the only church with a Pirate Choir this Sunday!
But the most fun part was that we found a stash of pirate eye patches so we all wore them when we processed into the sanctuary. It was really fun.
I'm sure we were the only church with a Pirate Choir this Sunday!
Saturday, November 10, 2007
Madrigal Dinner
We had the Madrigal Dinner tonight, and it was a great success. It was set in 1492 in Barcelona, and had Christopher Columbus and pirates! I don't think very many madrigal dinners have pirates!
Today was a dialysis day, and I was waiting for Gail in the lobby while they were taking her off the machine. It took a long time, so I eventually wandered back in. Her blood pressure was low and they wouldn't let her leave. Finally it made it up to 97, and they let her go since I was driving.
I asked her what it was at first, and she said 54 over 37.
Yikes.
Usually when it is low, we start talking to her about George Bush and that gets it high again.
I guess he is good for something.
Today was a dialysis day, and I was waiting for Gail in the lobby while they were taking her off the machine. It took a long time, so I eventually wandered back in. Her blood pressure was low and they wouldn't let her leave. Finally it made it up to 97, and they let her go since I was driving.
I asked her what it was at first, and she said 54 over 37.
Yikes.
Usually when it is low, we start talking to her about George Bush and that gets it high again.
I guess he is good for something.
Friday, November 09, 2007
Nerd Alert
How nerdy can one person be?
I'm glad you asked!
You have undoubtedly heard of the Book of the Month Club, or the Wine of the Month Club.
Well, I am a proud member of the Pencil of the Month Club, and I paid up for the limited edition version as well. Trust me, it doesn't get any nerdier than that!
Every month I receive three or so pencils of various kinds. Some are novelty pencils. maybe a pencil from China made of recycled newspapers scented with pineapple. Or an orange Rhodia pencil. Or a triangular Mongol or a big fat red Mongol for kids. A pencil with the multiplication tables on it, or a California Republic Palamino, my favorite of them all.
I got a pencil holder with a magnet on it shaped like a musical note and two really cool pencil sharpeners.
The pencils are really fun, but I think what I like best is just knowing that something is coming for me in the mail and it will be a surprise.
You can be a pencil nerd too! Just go to
http://www.pencilthings.com/servlet/Detail?no=1031
Then you'll have at least one thing to look forward to every month!
It's the little things that keep us going!
I'm glad you asked!
You have undoubtedly heard of the Book of the Month Club, or the Wine of the Month Club.
Well, I am a proud member of the Pencil of the Month Club, and I paid up for the limited edition version as well. Trust me, it doesn't get any nerdier than that!
Every month I receive three or so pencils of various kinds. Some are novelty pencils. maybe a pencil from China made of recycled newspapers scented with pineapple. Or an orange Rhodia pencil. Or a triangular Mongol or a big fat red Mongol for kids. A pencil with the multiplication tables on it, or a California Republic Palamino, my favorite of them all.
I got a pencil holder with a magnet on it shaped like a musical note and two really cool pencil sharpeners.
The pencils are really fun, but I think what I like best is just knowing that something is coming for me in the mail and it will be a surprise.
You can be a pencil nerd too! Just go to
http://www.pencilthings.com/servlet/Detail?no=1031
Then you'll have at least one thing to look forward to every month!
It's the little things that keep us going!
Wednesday, November 07, 2007
Surrounded by Bad News
There is too much bad news in my little part of the world.
I have my friend Moony fighting her way back from myelodisplastic syndrome. My friend David fighting throat cancer. A couple of younger friends battling their addictions. A friend in her late 60's with 90 hard fought days sobriety who stopped smoking at the same time. A friend who has just finished her successful treatment for breast cancer, and another who just got her diagnosis. A friend with kidney disease who is waiting for a transplant from her sister, who the tests are showing may also have kidney disease.
I light a candle for them every week, but I can't even keep them all in my mind at the same time.
I pray for their health, for their strength, for them to be surrounded by love and light. I hope someone is listening...
I have my friend Moony fighting her way back from myelodisplastic syndrome. My friend David fighting throat cancer. A couple of younger friends battling their addictions. A friend in her late 60's with 90 hard fought days sobriety who stopped smoking at the same time. A friend who has just finished her successful treatment for breast cancer, and another who just got her diagnosis. A friend with kidney disease who is waiting for a transplant from her sister, who the tests are showing may also have kidney disease.
I light a candle for them every week, but I can't even keep them all in my mind at the same time.
I pray for their health, for their strength, for them to be surrounded by love and light. I hope someone is listening...
Happy birthday
Tizi-n-Tichka were born one year ago today! Happy birthday little puppies! We love them so much!
Here is a picture of them the day we got them, exploring the back yard for the first time!
Here is a picture of them the day we got them, exploring the back yard for the first time!
Tuesday, November 06, 2007
Hassled and Harried
Too much work today, too much to do, too much to think about.
Then off to a couple of back to back meetings at FCC. Found myself signing up for more things to do, how can that be, I am dragging already.
But I am also feeling supported and appreciated there so it feels OK.
It is still beyond imagining that I am part of a church. If I think about it, I don't believe it. But I like these people. I like the intentional way they live, and the way they grapple with the hard stuff. I like their rigorous thinking and the way they value each other.
Yael told a story about being in Israel and taking a boat from one side of the Red Sea to the other with a bunch of Anglican priests. In the middle of the sea, they stopped the boat and sat there praying for a very long time. I love that image of the still, quiet sea in the middle of the water.
Perhaps that is where Gail and I are right now. We have left one bank of the sea and are halfway to the other side. And it is still here now, although we know it will be chaotic when we get to the other side.
We should appreciate this quiet time while we have it!
Then off to a couple of back to back meetings at FCC. Found myself signing up for more things to do, how can that be, I am dragging already.
But I am also feeling supported and appreciated there so it feels OK.
It is still beyond imagining that I am part of a church. If I think about it, I don't believe it. But I like these people. I like the intentional way they live, and the way they grapple with the hard stuff. I like their rigorous thinking and the way they value each other.
Yael told a story about being in Israel and taking a boat from one side of the Red Sea to the other with a bunch of Anglican priests. In the middle of the sea, they stopped the boat and sat there praying for a very long time. I love that image of the still, quiet sea in the middle of the water.
Perhaps that is where Gail and I are right now. We have left one bank of the sea and are halfway to the other side. And it is still here now, although we know it will be chaotic when we get to the other side.
We should appreciate this quiet time while we have it!
Monday, November 05, 2007
Daylight Savings Time
The clock turned Sunday night, and we had enough daylight in the morning to take the pups on a walk. It was so nice. We walked down the street and through a rural area, around to the chicken coop. There are about 10 chickens in there, and they have gotten very big since we last saw them about three months ago. We always stop there and have the dogs quietly watch them. I toss them a little dog food, and they cluck around looking for it. I think it is good training for the dogs to sit there quietly looking at the hens.
Gail sent me a note thanking me for getting her to get up and walk them. I told her the best part of the walk is spending time with her.
We are such mooshes!
Gail sent me a note thanking me for getting her to get up and walk them. I told her the best part of the walk is spending time with her.
We are such mooshes!
Sunday, November 04, 2007
Madrigal Dinner Gown
Gail has been busily working her little fingers to the bone sewing new dresses for us for the upcoming Madrigal Dinner. Hers is green and mine is red, and they are both incredibly splendiferous!
Last year at this time, we weren't sure we would be here for the Madrigal Dinner, and here we are again. We still hope we won't be here for it. Hope springs eternal.
In today's newspaper, there was a story about two local teenagers killed in a car accident. As sad as that is, we can't help but hoping that their families are considering donating their organs.
Last year at this time, we weren't sure we would be here for the Madrigal Dinner, and here we are again. We still hope we won't be here for it. Hope springs eternal.
In today's newspaper, there was a story about two local teenagers killed in a car accident. As sad as that is, we can't help but hoping that their families are considering donating their organs.
Saturday, November 03, 2007
Moony
We went for a walk with Moony today. It was so good to see her. She had a bone marrow transplant which almost killed her. She was the sickest person I have ever known, but she did survive it. She and Gail talked a lot about being sick and recovering, and going through transplants. It was a good walk.
Gail is a little less scared of the cardiac catheter test. She talked with me about it and with a friend of hers at work, who told her, "ohhhhh, it'll be OK."
Friends are good.
Gail is a little less scared of the cardiac catheter test. She talked with me about it and with a friend of hers at work, who told her, "ohhhhh, it'll be OK."
Friends are good.
Friday, November 02, 2007
More tests
So we talked to the transplant coordinator about the tests, and she will need to have a cardiac catheter test again.
Gail is VERY unhappy and scared about this. It hurt last time, and she is afraid of the pain. And she is afraid that they will have to do some procedure like they did last time.
We did clarify that the test itself, the cardiac cath, will not take her off of the active transplant list. She will only come off the list if they have to do a procedure on her, insert a stent or a balloon.
Hopefully, she will be in good shape and they won't have to do anything but go in there and look around and then stamp her Grade A, ready to go.
She thinks she will have to stay overnight in the hospital, and she is very scared about that too. I told her all her friends will come in and visit her, and we'll have a party. I have to figure out how I can smuggle the puppies in to the cardiac ward. Tricky, very tricky.
We didn't think we would have to do this again.
Gail is VERY unhappy and scared about this. It hurt last time, and she is afraid of the pain. And she is afraid that they will have to do some procedure like they did last time.
We did clarify that the test itself, the cardiac cath, will not take her off of the active transplant list. She will only come off the list if they have to do a procedure on her, insert a stent or a balloon.
Hopefully, she will be in good shape and they won't have to do anything but go in there and look around and then stamp her Grade A, ready to go.
She thinks she will have to stay overnight in the hospital, and she is very scared about that too. I told her all her friends will come in and visit her, and we'll have a party. I have to figure out how I can smuggle the puppies in to the cardiac ward. Tricky, very tricky.
We didn't think we would have to do this again.
Thursday, November 01, 2007
Nephrologist Visit
Gail and I met with her nephrologis (kidney doctor) yesterday for her regular monthly visit. Everything looks good. All her blood work is good, her blood pressure is OK.
Her doc's only concern is that Gail's catheter last until she gets the transplant. When the surgeon installed it, he said that the catheters are designed to last a couple of months, but he knew a guy who had one for four years.
The main concern is infection since it is a straight tube into her heart. Gail is 100% good in avoiding infection. She NEVER gets it wet. You can imagine how hard it is to go almost a year without ever getting the upper right quadrant of your torso wet. But she is adamant about it, thank goodness. I don't know that I could be as totally careful about that as she is.
So we aren't worried about infection. There is a possibility that the tube can cause a narrowing of the vein. This is serious because it is permanent damage that isn't resolved by just removing the catheter. The signs to watch for are that the arm gets swollen because fluid isn't draining out through the vein. So now I have something else to worry about.
Gail had the surgery and began dialysis on December 13th. The insurance coverage was authorized for a year, so that needs to be reinstated. Her transplant coordinator is taking care of that.
But her doctor reminded her that she had to take a bunch of tests last year before they would certify her to the transplant list. She recommended that we call them and find out if additional tests will be required to keep her on the list past the one year anniversary. If so, we will want to get them done before hand so that she doesn't spend time off the transplant list.
Gail is too scared to talk to her coordinator about this, so I have been delegated to do so.
She and I are very different about some things, and this is one of them. I crave as much information as I can get, and she feels safer not knowing. So talking to her coordinator about the tests is one way I can help out.
In a seasonally appropriate ghoulish aside, Halloween is a time of lots of drinking and driving. Maybe a kidney/pancreas will come available that is just her type!
Her doc's only concern is that Gail's catheter last until she gets the transplant. When the surgeon installed it, he said that the catheters are designed to last a couple of months, but he knew a guy who had one for four years.
The main concern is infection since it is a straight tube into her heart. Gail is 100% good in avoiding infection. She NEVER gets it wet. You can imagine how hard it is to go almost a year without ever getting the upper right quadrant of your torso wet. But she is adamant about it, thank goodness. I don't know that I could be as totally careful about that as she is.
So we aren't worried about infection. There is a possibility that the tube can cause a narrowing of the vein. This is serious because it is permanent damage that isn't resolved by just removing the catheter. The signs to watch for are that the arm gets swollen because fluid isn't draining out through the vein. So now I have something else to worry about.
Gail had the surgery and began dialysis on December 13th. The insurance coverage was authorized for a year, so that needs to be reinstated. Her transplant coordinator is taking care of that.
But her doctor reminded her that she had to take a bunch of tests last year before they would certify her to the transplant list. She recommended that we call them and find out if additional tests will be required to keep her on the list past the one year anniversary. If so, we will want to get them done before hand so that she doesn't spend time off the transplant list.
Gail is too scared to talk to her coordinator about this, so I have been delegated to do so.
She and I are very different about some things, and this is one of them. I crave as much information as I can get, and she feels safer not knowing. So talking to her coordinator about the tests is one way I can help out.
In a seasonally appropriate ghoulish aside, Halloween is a time of lots of drinking and driving. Maybe a kidney/pancreas will come available that is just her type!
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