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!!
Friday, December 28, 2007
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!
Friday, October 26, 2007
Update
Gail talked to her transplant coordinator yesterday. He said she is at the top of the list. Yawn.
Actually, we try to ask him more questions every time we call him. This time he said there is one man on the A blood type list ahead of her on the regional list.
She asked him if they have been doing any kidney/pancreas transplants, and he said they did one a couple of weeks ago. So at least there is movement on the list.
He also said that someone got called in for a transplant that didn't work out, so they sent him home without a new kidney. As much of a drag as that would be, I kind of wouldn't mind having a trial run. It has been a long time since we talked to the transplant center about what is going to happen. My memory about the details has dimmed a little over the past 11 months.
So this is positive news. We were feeling a little jaded for the last few months, not really expecting the call. But now we are a little edgier.
We are going to a Halloween party tonight. Our plan is to dress up in hospital scrubs and go as a kidney donor and recipient. We thought about using this costume last year, but Gail was too tender to do it. This year she is up for it, so that is probably a good sign as well.
I'll try to get a picture of us in our costumes and post it.
Actually, we try to ask him more questions every time we call him. This time he said there is one man on the A blood type list ahead of her on the regional list.
She asked him if they have been doing any kidney/pancreas transplants, and he said they did one a couple of weeks ago. So at least there is movement on the list.
He also said that someone got called in for a transplant that didn't work out, so they sent him home without a new kidney. As much of a drag as that would be, I kind of wouldn't mind having a trial run. It has been a long time since we talked to the transplant center about what is going to happen. My memory about the details has dimmed a little over the past 11 months.
So this is positive news. We were feeling a little jaded for the last few months, not really expecting the call. But now we are a little edgier.
We are going to a Halloween party tonight. Our plan is to dress up in hospital scrubs and go as a kidney donor and recipient. We thought about using this costume last year, but Gail was too tender to do it. This year she is up for it, so that is probably a good sign as well.
I'll try to get a picture of us in our costumes and post it.
Tuesday, October 09, 2007
Nightmare
The other night, Gail woke me up in the middle of the night saying that she thought her blood sugar was low, and she had had a really bad nightmare. I rationally suggested that she go in the bathroom and check her blood sugar, but she was too scared to get out of bed because "they" might get her.
I got her test kit and she was right. Her blood sugar was 42. She wasn't showing any of the normal signs (sweating, clammy, etc), so it was kind of a surprise. She ate some glucose tablets, and got her blood sugar up where it should be.
But she was still scared from her nightmare. She was too scared to tell me what she had been dreaming. I talked to her and sang her a little bit from Mendellsohn's Elijah, "He watching over Israel slumbers not, nor sleeps" (which is a comforting sort of song), and she finally got back to sleep.
The next day she told me that she had been dreaming that she was in a place where they were doing horrible horrible medical experiments on people and they were trying to get her.
Poor sweetie. Everything looks fine on the surface, but underneath it all, there is so much dread and fear roiling around.
I got her test kit and she was right. Her blood sugar was 42. She wasn't showing any of the normal signs (sweating, clammy, etc), so it was kind of a surprise. She ate some glucose tablets, and got her blood sugar up where it should be.
But she was still scared from her nightmare. She was too scared to tell me what she had been dreaming. I talked to her and sang her a little bit from Mendellsohn's Elijah, "He watching over Israel slumbers not, nor sleeps" (which is a comforting sort of song), and she finally got back to sleep.
The next day she told me that she had been dreaming that she was in a place where they were doing horrible horrible medical experiments on people and they were trying to get her.
Poor sweetie. Everything looks fine on the surface, but underneath it all, there is so much dread and fear roiling around.
Friday, October 05, 2007
Tired
I am tired. I am tired of Gail being on dialysis. I am tired of waiting for the call from the transplant center. I am tired of constantly having to plan around dialysis and needing to be close to San Francisco.
We called the transplant coordinator, who is very nice on the phone. He told us, again, that she is at the top of the list and the call could come any day.
They have been saying that for ten months.
We understand that it is a matter of when appropriate organs become available, and that there is nothing anyone can do about making it happen sooner. But it is still hard.
I keep a suitcase in the car with several days clothes to wear in San Francisco when she gets called. Soon I am going to have to remove the warm weather clothing and replace it with cold weather clothes. A sad way to mark the changing of the seasons.
If we haven't had the call by December 13th, it will have been a year. That will be a disturbing anniversary. I better plan something wonderful to do with her.
On the other hand, Gail's health is good, her blood tests are good, the puppies are good, and we are happy. So don't get the idea that things are morose around here. All we have to do is play with the pups for a while, and everything is better! (but I'm still tired).
We called the transplant coordinator, who is very nice on the phone. He told us, again, that she is at the top of the list and the call could come any day.
They have been saying that for ten months.
We understand that it is a matter of when appropriate organs become available, and that there is nothing anyone can do about making it happen sooner. But it is still hard.
I keep a suitcase in the car with several days clothes to wear in San Francisco when she gets called. Soon I am going to have to remove the warm weather clothing and replace it with cold weather clothes. A sad way to mark the changing of the seasons.
If we haven't had the call by December 13th, it will have been a year. That will be a disturbing anniversary. I better plan something wonderful to do with her.
On the other hand, Gail's health is good, her blood tests are good, the puppies are good, and we are happy. So don't get the idea that things are morose around here. All we have to do is play with the pups for a while, and everything is better! (but I'm still tired).
Saturday, September 08, 2007
Gopher hunt
Tichka was really into the gopher holes. Usually he gives them a sniff and moves on, but he was really intense about them on Friday.
I don't know why. Sometimes, we can see the gopher digging the hole and sticking his head out. We try to get the dogs interested, but they can't be bothered.
But this day, he was totally focused on what appeared to be an empty hole.
There is probably a metaphor about life here somewhere...
I don't know why. Sometimes, we can see the gopher digging the hole and sticking his head out. We try to get the dogs interested, but they can't be bothered.
But this day, he was totally focused on what appeared to be an empty hole.
There is probably a metaphor about life here somewhere...
Tizi on the lookout
We took the pups to Lighthouse Field after work on Friday. They were so happy! They chased around and ran circles with each other.
I caught a good shot of Tizi in the late light.
Isn't she pretty?
I caught a good shot of Tizi in the late light.
Isn't she pretty?
Thursday, September 06, 2007
Changes
Robin found out last night that he was selected for a new job (Yay!!!).
He'll be working in Santa Cruz, so he and Sachi won't be commuting together from Monterey anymore. Which means they won't be able to pick Gail up after dialysis. Which means I WAS RIGHT that it would be good for her to move to the Santa Cruz center!
Hah!
He'll be working in Santa Cruz, so he and Sachi won't be commuting together from Monterey anymore. Which means they won't be able to pick Gail up after dialysis. Which means I WAS RIGHT that it would be good for her to move to the Santa Cruz center!
Hah!
Wednesday, September 05, 2007
So far, so good
I met Gail at the new dialysis center yesterday afternoon. Things went fine there. She misses all the staff at the other center, but she is being a good sport about it.
The social worker went through all the paperwork and instruction and questions that we went through when we started at the first center nine long months ago. (it still feels weird to be on the receiving end of a social worker's professional interest!) It is amazing how much more we know about dialysis now than we did then. How scared we were then, and how blase we are about it now.
I am surprised at how relieved I am having her closer. I even daydream about being able to stop in a visit with her sometimes if I am out and about during her dialysis time.
I know this is something she did for me, and I am really grateful.
The social worker went through all the paperwork and instruction and questions that we went through when we started at the first center nine long months ago. (it still feels weird to be on the receiving end of a social worker's professional interest!) It is amazing how much more we know about dialysis now than we did then. How scared we were then, and how blase we are about it now.
I am surprised at how relieved I am having her closer. I even daydream about being able to stop in a visit with her sometimes if I am out and about during her dialysis time.
I know this is something she did for me, and I am really grateful.
Saturday, September 01, 2007
Be careful what you ask for...
I have been asking Gail to transfer from the Watsonville dialysis center to the Santa Cruz dialysis center because it is so hard to get out there to pick her up when I need to get her.
I just found out that she is transferring to the Santa Cruz center next Tuesday.
I feel guilty because she really likes the Watsonville center and the nurses and staff there. Now I'm scared that she really won't like it at the new place.
Or worse, that the care may not be as good.
I keep hearing my mom asking us why she needed to move out of her own home to my brother's home, just "for the convenience" of her children.
I guess guilt never goes away.
I just found out that she is transferring to the Santa Cruz center next Tuesday.
I feel guilty because she really likes the Watsonville center and the nurses and staff there. Now I'm scared that she really won't like it at the new place.
Or worse, that the care may not be as good.
I keep hearing my mom asking us why she needed to move out of her own home to my brother's home, just "for the convenience" of her children.
I guess guilt never goes away.
Oh, that's what it was...
After noticing Gail's odd behavior last weekend, I talked to her about it on Sunday. She hadn't noticed it, but could recognize it when I brought it up. We talked to her nephrologist about it on Thursday, who confirmed that one of the drugs Gail had been shown to interact with anti-depressants. She was prescribed this drug, Regelin, because her stomach wasn't emptying itself of food properly, which was causing her to be nauseated and to throw up with a distressing frequency.
Thursday night, Gail didn't take the Regelin. She slept well, didn't feel nauseated or throw up, and in the morning she was completely transformed. She said it felt like the sun had come up. I could tell just by the sound of her voice that she was back! She was happy all day, and has been all day today.
I, of course, am now worried about what will happen with her stomach if she doesn't take the Regelin, but we will just have to figure it out. It is a relief to at least know what was causing her to feel so bad.
Thursday night, Gail didn't take the Regelin. She slept well, didn't feel nauseated or throw up, and in the morning she was completely transformed. She said it felt like the sun had come up. I could tell just by the sound of her voice that she was back! She was happy all day, and has been all day today.
I, of course, am now worried about what will happen with her stomach if she doesn't take the Regelin, but we will just have to figure it out. It is a relief to at least know what was causing her to feel so bad.
Moo Cards, the backs
We gave a little info on the back of the cards so people could remember what kind of dogs they are.
Moo Cards
Having Moo cards printed with pictures of the puppies?
About 25 cents.
The look on people's faces when you hand them out at dog beach? Priceless!
About 25 cents.
The look on people's faces when you hand them out at dog beach? Priceless!
Tuesday, August 28, 2007
WTF?
Gail has seemed depressed lately and sort of detached. It makes sense that anyone in her situation has every right to feel depressed, and it makes sense that she is withdrawing within herself. But it just doesn't feel right.
I talked with her about it on Sunday and pointed out some odd behaviors which she hadn't noticed. She has done some research, and the medication that she has to take for gastropariesis has side effects of depression and anxiety (what's your choice, madam? nausea and throwing up, or depression and anxiety?).
So maybe that is the problem. Or maybe being on dialysis is taking too much of other drugs out of her system. Or maybe it's a menopausal thing. or maybe... or maybe...
It is so hard to tell what is going on.
And how much do doctors even know about drug interactions? And then throw dialysis into that mix. And then throw blood sugar ups and downs into it. Now try to figure it out!
I talked with her about it on Sunday and pointed out some odd behaviors which she hadn't noticed. She has done some research, and the medication that she has to take for gastropariesis has side effects of depression and anxiety (what's your choice, madam? nausea and throwing up, or depression and anxiety?).
So maybe that is the problem. Or maybe being on dialysis is taking too much of other drugs out of her system. Or maybe it's a menopausal thing. or maybe... or maybe...
It is so hard to tell what is going on.
And how much do doctors even know about drug interactions? And then throw dialysis into that mix. And then throw blood sugar ups and downs into it. Now try to figure it out!
Thursday, August 23, 2007
Wrestling with the Angel
Here is what I said in church on August 5th.
In 30 plus years of singing in choirs, even when only a small percentage of that time has been in churches, you learn a lot of scripture. One of the things I love most is singing in Latin. I took Latin in high school, and I have always loved it. An appreciation of the Latin Mass is one of very few things that Pope Benedict and I agree on.
I’ve sung numerous masses and lots of other sacred texts. Every one of them has been different, and everyone has been beautiful, and they are often hard. Grappling with the music, really wrestling with it always rewards me with a deeper understanding and appreciation of the words themselves and how they speak to our deepest hopes and fears.
A few years ago, we were singing Stravinsky’s Symphony of Psalms, a piece that is not for the faint- hearted. We were all working really hard on it, getting together outside of rehearsal, listening to recordings, studying at home on the piano. But it was just hard. The harmony is very unusual, so until everyone in the group knows their parts really well, it sounds just as weird when it is right as it does when it is wrong!
One day after we had been hammering on it in rehearsal, I was talking with some of the other singers, and we were sort of commiserating over how hard the piece was, and how discouraged we were, and I heard myself saying, “But, we’re wrestling with the angel!”
I’m not sure the other folks had any idea what I was talking about. But I knew exactly what I meant. We were wrestling with the angel, and when we were done, the angel would bless us. And that is exactly what happened. After all our hard work, we had the wonderful experience of seeing the strange wonderful structure of this music fit together perfectly. We did wrestle the angel, and it did bless us.
Gail read you the heart of Jacob’s story just now, and I’d like to tell you a little more about what was going on.
Jacob has an older twin brother named Esau. There is a prophecy that they will both sire nations, and that the nation of the older brother will be mighty and will be served by the nation of the younger brother. This sounds pretty darn good for Esau, the older brother, and pretty crummy for Jacob. So, Jacob tricks their father into giving him the blessing that should have been his brother’s. When Esau finds out, he is so furious that Jacob fears for his life and has to leave home.
Jacob is gone for twenty years, and he is finally coming home with his family and all his possessions. But he is afraid that Esau may still want to kill him and his family. As he gets nearer, he finds out that Esau is headed his way, and he has 400 men with him.
Jacob is terrified. He sends his family and servants on ahead, and he waits behind and prays.
This is probably the most frightening night of Jacob’s life. He is all alone. Esau may kill him tomorrow. Esau may kill his entire family. He may lose everything he has the next day.
That night, in the darkness, out of nowhere, a man attacks Jacob. The man jumps him and they wrestle all night long. As the morning approaches, the man realizes that he cannot overpower Jacob, and he wrenches Jacob’s hip at the socket. But Jacob still won’t let go; he keeps wrestling. His attacker gets desperate and says, “Let me go, for it is daybreak.” By now, Jacob has realized that this is not an ordinary man, but an angel, and he answers him, “I will not let you go unless you bless me.”
The angel blesses him and tells him that his name is now Israel because he has struggled with god and with men and has overcome.
Jacob is reassured that God has heard his prayers, so when morning comes, he runs out ahead of his family to Esau, and bows very low and humbly to him. And Esau, the brother Jacob cheated twenty years ago, the man Jacob has feared all these years, this fierce man with four hundred soldiers at his command, Esau embraces Jacob and welcomes him home and back to his family.
Now, fortunately, I have never been jumped by a stranger and I have never been forced to wrestle till dawn.
But, nonetheless, I believe in wrestling with angels.
Every morning Gail and I battle to get ourselves out of bed so we can take our puppies for a walk. (you didn’t think that I would give this whole little talk without mentioning the puppies, did you?). And trust me, it is a battle every morning. But when we manage to get ourselves up and out, when we wrestle with that angel, that relatively small and innocuous angel, we are nonetheless blessed with calmer, quieter puppies, and we have such a good time with them. Our whole day is better when we manage to get ourselves up, when we wrestle with the angel of our own sleepy inertia.
Now there are lots of way bigger angels in the world who have jumped all of us in the dark of the night, and who wrestle with us when we are alone and terrified.
Gail and I, especially Gail, are wrestling with her kidney failure and her being on dialysis. Like Jacob, we are scared, we are tired, we don’t know what is going to happen tomorrow.
We wrestle with this angel every day and every night, every time she checks her blood sugar, every time I drive her to dialysis, and every time we go to sleep waiting for the transplant center to call, and every morning we wake up knowing that we have another day to get through.
But, I believe that if we keep wrestling, we will be ready when the phone finally does ring, and she gets her transplant.
Now, I don’t want you to think that I am all Pollyanna about this. The angel left his mark on Jacob when he wrenched his hip, and just like Jacob, we won’t get out of this wrestling match unscathed. This kidney thing has changed both of us forever. And rumor has it that getting a double organ transplant is no walk in the park.
We are all wrestling our own angels, big ones and small ones. Some of us are sick, and some of us love someone who is sick. Some of us are facing the challenges of a new job or a new school. Some of us are fighting poverty by working with COPA or visiting people in jail.
It can be tempting to give up in these battles, to surrender to our hopelessness or fear, to just turn over and go back to sleep instead of taking the pups for a walk. But the story of Jacob teaches us that if we wrestle with the angel, if we persevere, if we hang on through that long dark night, then we will be blessed. The story also teaches us that we won’t be alone forever. In the morning, like Jacob, we return to our lives, to our families and our communities, to the life that a loving God has given us.
My hope for all of you here today is that you will fight the good fight, that you will engage fully in your lives, that you will grapple with your challenges and stay the course.
May God give each of you everything you need to wrestle with your own angels, and may God bless you all.
Amen
In 30 plus years of singing in choirs, even when only a small percentage of that time has been in churches, you learn a lot of scripture. One of the things I love most is singing in Latin. I took Latin in high school, and I have always loved it. An appreciation of the Latin Mass is one of very few things that Pope Benedict and I agree on.
I’ve sung numerous masses and lots of other sacred texts. Every one of them has been different, and everyone has been beautiful, and they are often hard. Grappling with the music, really wrestling with it always rewards me with a deeper understanding and appreciation of the words themselves and how they speak to our deepest hopes and fears.
A few years ago, we were singing Stravinsky’s Symphony of Psalms, a piece that is not for the faint- hearted. We were all working really hard on it, getting together outside of rehearsal, listening to recordings, studying at home on the piano. But it was just hard. The harmony is very unusual, so until everyone in the group knows their parts really well, it sounds just as weird when it is right as it does when it is wrong!
One day after we had been hammering on it in rehearsal, I was talking with some of the other singers, and we were sort of commiserating over how hard the piece was, and how discouraged we were, and I heard myself saying, “But, we’re wrestling with the angel!”
I’m not sure the other folks had any idea what I was talking about. But I knew exactly what I meant. We were wrestling with the angel, and when we were done, the angel would bless us. And that is exactly what happened. After all our hard work, we had the wonderful experience of seeing the strange wonderful structure of this music fit together perfectly. We did wrestle the angel, and it did bless us.
Gail read you the heart of Jacob’s story just now, and I’d like to tell you a little more about what was going on.
Jacob has an older twin brother named Esau. There is a prophecy that they will both sire nations, and that the nation of the older brother will be mighty and will be served by the nation of the younger brother. This sounds pretty darn good for Esau, the older brother, and pretty crummy for Jacob. So, Jacob tricks their father into giving him the blessing that should have been his brother’s. When Esau finds out, he is so furious that Jacob fears for his life and has to leave home.
Jacob is gone for twenty years, and he is finally coming home with his family and all his possessions. But he is afraid that Esau may still want to kill him and his family. As he gets nearer, he finds out that Esau is headed his way, and he has 400 men with him.
Jacob is terrified. He sends his family and servants on ahead, and he waits behind and prays.
This is probably the most frightening night of Jacob’s life. He is all alone. Esau may kill him tomorrow. Esau may kill his entire family. He may lose everything he has the next day.
That night, in the darkness, out of nowhere, a man attacks Jacob. The man jumps him and they wrestle all night long. As the morning approaches, the man realizes that he cannot overpower Jacob, and he wrenches Jacob’s hip at the socket. But Jacob still won’t let go; he keeps wrestling. His attacker gets desperate and says, “Let me go, for it is daybreak.” By now, Jacob has realized that this is not an ordinary man, but an angel, and he answers him, “I will not let you go unless you bless me.”
The angel blesses him and tells him that his name is now Israel because he has struggled with god and with men and has overcome.
Jacob is reassured that God has heard his prayers, so when morning comes, he runs out ahead of his family to Esau, and bows very low and humbly to him. And Esau, the brother Jacob cheated twenty years ago, the man Jacob has feared all these years, this fierce man with four hundred soldiers at his command, Esau embraces Jacob and welcomes him home and back to his family.
Now, fortunately, I have never been jumped by a stranger and I have never been forced to wrestle till dawn.
But, nonetheless, I believe in wrestling with angels.
Every morning Gail and I battle to get ourselves out of bed so we can take our puppies for a walk. (you didn’t think that I would give this whole little talk without mentioning the puppies, did you?). And trust me, it is a battle every morning. But when we manage to get ourselves up and out, when we wrestle with that angel, that relatively small and innocuous angel, we are nonetheless blessed with calmer, quieter puppies, and we have such a good time with them. Our whole day is better when we manage to get ourselves up, when we wrestle with the angel of our own sleepy inertia.
Now there are lots of way bigger angels in the world who have jumped all of us in the dark of the night, and who wrestle with us when we are alone and terrified.
Gail and I, especially Gail, are wrestling with her kidney failure and her being on dialysis. Like Jacob, we are scared, we are tired, we don’t know what is going to happen tomorrow.
We wrestle with this angel every day and every night, every time she checks her blood sugar, every time I drive her to dialysis, and every time we go to sleep waiting for the transplant center to call, and every morning we wake up knowing that we have another day to get through.
But, I believe that if we keep wrestling, we will be ready when the phone finally does ring, and she gets her transplant.
Now, I don’t want you to think that I am all Pollyanna about this. The angel left his mark on Jacob when he wrenched his hip, and just like Jacob, we won’t get out of this wrestling match unscathed. This kidney thing has changed both of us forever. And rumor has it that getting a double organ transplant is no walk in the park.
We are all wrestling our own angels, big ones and small ones. Some of us are sick, and some of us love someone who is sick. Some of us are facing the challenges of a new job or a new school. Some of us are fighting poverty by working with COPA or visiting people in jail.
It can be tempting to give up in these battles, to surrender to our hopelessness or fear, to just turn over and go back to sleep instead of taking the pups for a walk. But the story of Jacob teaches us that if we wrestle with the angel, if we persevere, if we hang on through that long dark night, then we will be blessed. The story also teaches us that we won’t be alone forever. In the morning, like Jacob, we return to our lives, to our families and our communities, to the life that a loving God has given us.
My hope for all of you here today is that you will fight the good fight, that you will engage fully in your lives, that you will grapple with your challenges and stay the course.
May God give each of you everything you need to wrestle with your own angels, and may God bless you all.
Amen
Wednesday, August 22, 2007
Tahoe Catamaran
We were in Tahoe for a wedding, and Gail and I managed to take a few hours to ourselves to ride on a boat. Nothing makes her happier than being on a boat, so it was a very good thing.
Friday, August 17, 2007
Bad Day at Black Rock
Yesterday was a bad day for me at work. Then I was late getting to a rehearsal for this weekend's wedding. Then Gail was really late getting out of dialysis because her blood pressure was too low at the end.
I reminded myself that the worst day at work is still better than the best day at dialysis.
I reminded myself that the worst day at work is still better than the best day at dialysis.
Thursday, August 16, 2007
Who's tired?
I was at a Vision Team meeting a couple of nights ago, and in the circle, I said that Gail wasn't doing very well. She's getting tired and discouraged.
Which is true, but I think I was really saying that I am not doing well. I am tired. I am tired of her being tired, tired of having to make intricate transportation plans to get her home from dialysis, tired of her not carrying her share of household duties, tired of not being able to make plans to go anywhere.
Just tired. And a little weepy.
I remind myself that lots of people have much worse things happening in their lives, but that only helps a little. This is still where I am living, and it's hard.
Which is true, but I think I was really saying that I am not doing well. I am tired. I am tired of her being tired, tired of having to make intricate transportation plans to get her home from dialysis, tired of her not carrying her share of household duties, tired of not being able to make plans to go anywhere.
Just tired. And a little weepy.
I remind myself that lots of people have much worse things happening in their lives, but that only helps a little. This is still where I am living, and it's hard.
Wednesday, August 08, 2007
Sermon Redux
I gave the sermon last Sunday, and I was pleased with how it went. I worked really hard on it, for between 7 and 10 hours probably. Gail helped me trim it down and give it a good ending.
Yesterday in the mail, I got a package that contained three copies of the sermon all laid out really nicely. One normal one, one in large print, and one translated into Spanish! They mail them to people who can't get to church and use them in Jail Ministry, etc. I had no idea that they did that with sermons. It is amazing how much more substantial it looked, all laid out and printed nice like that.
Last night, Grant called me to thank me for the sermon. The church mails it to his wife in the nursing home. He told me that they had given her a permanent that day, and that he was really "wrestling with the angel" to do that, and that the sermon had meant so much to him. And then I got an email from a woman I don't know, saying how much she appreciated it too.
This turned out to be a much more rewarding experience than I expected it to be.
Who knew?
Yesterday in the mail, I got a package that contained three copies of the sermon all laid out really nicely. One normal one, one in large print, and one translated into Spanish! They mail them to people who can't get to church and use them in Jail Ministry, etc. I had no idea that they did that with sermons. It is amazing how much more substantial it looked, all laid out and printed nice like that.
Last night, Grant called me to thank me for the sermon. The church mails it to his wife in the nursing home. He told me that they had given her a permanent that day, and that he was really "wrestling with the angel" to do that, and that the sermon had meant so much to him. And then I got an email from a woman I don't know, saying how much she appreciated it too.
This turned out to be a much more rewarding experience than I expected it to be.
Who knew?
Wednesday, August 01, 2007
Check-in with UCSF
We usually try to call UCSF at the beginning of each month to see where Gail is on the regional list. We managed to make it a conference call today, so I got to ask all my questions.
On the regional list, she is in the top few people in her blood type. She has been on the list since April 2005.
I never knew that whenever a donor is available, they do the genetic blood tests on EVERYBODY who is active on the list, all the way down.
He said the same thing he has said since she went on the list in November 2006. It could be any day, or it could be a couple of months.
He thinks it is unlikely that she would still be on dialysis by the end of the year, so that postpones the need for a fistula. I am glad about that. I really don't want her to have to have a fistula.
Of course the REALLY disappointing news is that he doesn't think they have WiFi in the hospital rooms. They have it across the street at the medical library tho, so that should work fine. I doubt they will bring me a chai in the library tho, dangit!
On the regional list, she is in the top few people in her blood type. She has been on the list since April 2005.
I never knew that whenever a donor is available, they do the genetic blood tests on EVERYBODY who is active on the list, all the way down.
He said the same thing he has said since she went on the list in November 2006. It could be any day, or it could be a couple of months.
He thinks it is unlikely that she would still be on dialysis by the end of the year, so that postpones the need for a fistula. I am glad about that. I really don't want her to have to have a fistula.
Of course the REALLY disappointing news is that he doesn't think they have WiFi in the hospital rooms. They have it across the street at the medical library tho, so that should work fine. I doubt they will bring me a chai in the library tho, dangit!
Visitors
For the last couple of weeks, I have needed to pick Gail up at dialysis on Tuesdays and Thursdays. After fretting a good bit, I decided I could get by with a little help from my friends. So I sent an email out to the usual suspects, and asked if they could pick me up at work on one of the days and drive me to Watsonville to get Gail. As you would imagine, the response was whole-hearted and enthusiastic. I had five or six people to choose from for every day. I managed to schedule it so no one had to do it more than once. And I tried to give the people who drove me a nice jar of plum/strawberry jam to thank them.
It has been quite lovely, actually. It is always about 45 minutes transit time, and I rarely get 45 minutes to just chat with people. So I have enjoyed the drive itself.
I always invite people in to see Gail. I think she likes seeing them; it's boring sitting in the dialysis room. I also like for people to know where it is and how to get her, in case we ever need to ask them for help again. At the same time I want to demystify the dialysis process, I also want people to know that this is a serious and sort of dangerous activity. I want them to understand that this is more than just sitting in an easy chair reading a book or knitting for three hours. Their responses have been interesting to watch.
One friend said that she didn't need to go in again. She had picked Gail up before, and she finds it depressing. Not Gail...Gail is fine. But the other folks, who are much sicker than Gail. She didn't have a need to see them again.
Another couple of friends were real sports and came into the treatment room even though they are uncomfortable with medical stuff. They talked a few minutes, eyes wide, and then said they would go save us a table for dinner at an adjoining restaurant.
Another friend who has kidney failure in her family came in and sat and talked with Gail, and was interested in the process. Another one was talking and suddenly said with a start, "Oh wow, I just realised that that is Gail's blood going through there!"
I think it is a real gift that our friends are willing to share the reality of dialysis with us, even just for a brief visit.
It has been quite lovely, actually. It is always about 45 minutes transit time, and I rarely get 45 minutes to just chat with people. So I have enjoyed the drive itself.
I always invite people in to see Gail. I think she likes seeing them; it's boring sitting in the dialysis room. I also like for people to know where it is and how to get her, in case we ever need to ask them for help again. At the same time I want to demystify the dialysis process, I also want people to know that this is a serious and sort of dangerous activity. I want them to understand that this is more than just sitting in an easy chair reading a book or knitting for three hours. Their responses have been interesting to watch.
One friend said that she didn't need to go in again. She had picked Gail up before, and she finds it depressing. Not Gail...Gail is fine. But the other folks, who are much sicker than Gail. She didn't have a need to see them again.
Another couple of friends were real sports and came into the treatment room even though they are uncomfortable with medical stuff. They talked a few minutes, eyes wide, and then said they would go save us a table for dinner at an adjoining restaurant.
Another friend who has kidney failure in her family came in and sat and talked with Gail, and was interested in the process. Another one was talking and suddenly said with a start, "Oh wow, I just realised that that is Gail's blood going through there!"
I think it is a real gift that our friends are willing to share the reality of dialysis with us, even just for a brief visit.
Thursday, July 26, 2007
Mine!
I think it is just time for another puppy picture. They are doing so great! They are really growing up. I am working with them on various tricks. They already know how to shake hands. Very cute.
I am working with Tichka on "Little Bark." I waggle my fingers at him and he gets a treat if he doesn't bark, but whines or makes a little cough. It's pretty cute. I am also working with him on roll-over.
I am working with Tizi on roll over and play dead. She is very smart and is getting the idea. I know we would make faster progress if I could work with her without Tichka insisting on being present!
Tichka is funny. He is much more manic than Tizi is. He will look at me in desperation trying to figure out how to get a treat. He'll fling himself into a down, thrust his paw at me, bark; anything to MAKE me give him a treat NOW!!
We are working on impulse control with him.
They are so wonderful.
I am working with Tichka on "Little Bark." I waggle my fingers at him and he gets a treat if he doesn't bark, but whines or makes a little cough. It's pretty cute. I am also working with him on roll-over.
I am working with Tizi on roll over and play dead. She is very smart and is getting the idea. I know we would make faster progress if I could work with her without Tichka insisting on being present!
Tichka is funny. He is much more manic than Tizi is. He will look at me in desperation trying to figure out how to get a treat. He'll fling himself into a down, thrust his paw at me, bark; anything to MAKE me give him a treat NOW!!
We are working on impulse control with him.
They are so wonderful.
Saturday, July 21, 2007
Flashback
I dropped Gail off at dialysis this afternoon. After a chai at Starbucks, where I am too cheap to pay for internet access, I came to the Watsonville library. What a nice little library this is. Very quiet and pleasant, and easy to get online. I didn't find a place I can plug in, but it is still nice.
I found a website the other day for the American Association of Kidney Patients. It has a web based site where you can load information about medications, doctor visits, doctor names addresses etc. I thought it might be useful to put Gail's stuff on there. Probably mostly useful as a way to make me feel like I am staying in control.
When I got here, I opened the black binder where I was keeping all her medical information and opened it up. I don't think I have opened it since she had the catheter installed, because all these feelings of fear and anxiety just washed over me. I was right back in that place where I was so afraid that she wouldn't agree to go on dialysis until she was really sick.
The last date I have in there is December 19, 2006, when we met with the dietician at the dialysis center.
We have come a long way since then. Dialysis three times a week; she has never missed. We are old hands at it now.
Now my anxiety is banked. I worry about her catheter getting infected, or knocked around by the dogs. I worry that the catheter will fail and she won't have a fistula. I guess they could do another catheter on the other side of her chest. It has taken much much longer to get the transplant than we expected, and I only hope that the catheter holds on until they call.
All the medical info I entered on the site is probably moot by now. I think dialysis changes everything. I need to get her past lab reports from when she has been on dialysis and enter those.
I think she is doing well on dialysis, but... I think she is getting tireder and tireder. Her phosphorous was too high last time, and she needs to further restrict her fluid intake. In the last week or so, it has felt like she shifted to being a resident of dialysis land, instead of being the day visitor we thought she would be, and then the tourist she turned into. Now she lives here. And me with her.
I found a website the other day for the American Association of Kidney Patients. It has a web based site where you can load information about medications, doctor visits, doctor names addresses etc. I thought it might be useful to put Gail's stuff on there. Probably mostly useful as a way to make me feel like I am staying in control.
When I got here, I opened the black binder where I was keeping all her medical information and opened it up. I don't think I have opened it since she had the catheter installed, because all these feelings of fear and anxiety just washed over me. I was right back in that place where I was so afraid that she wouldn't agree to go on dialysis until she was really sick.
The last date I have in there is December 19, 2006, when we met with the dietician at the dialysis center.
We have come a long way since then. Dialysis three times a week; she has never missed. We are old hands at it now.
Now my anxiety is banked. I worry about her catheter getting infected, or knocked around by the dogs. I worry that the catheter will fail and she won't have a fistula. I guess they could do another catheter on the other side of her chest. It has taken much much longer to get the transplant than we expected, and I only hope that the catheter holds on until they call.
All the medical info I entered on the site is probably moot by now. I think dialysis changes everything. I need to get her past lab reports from when she has been on dialysis and enter those.
I think she is doing well on dialysis, but... I think she is getting tireder and tireder. Her phosphorous was too high last time, and she needs to further restrict her fluid intake. In the last week or so, it has felt like she shifted to being a resident of dialysis land, instead of being the day visitor we thought she would be, and then the tourist she turned into. Now she lives here. And me with her.
Thursday, July 19, 2007
Church
Dave sent an email a couple of days ago inviting me to stand in for him and the other pastors at church in a few weeks. This is proof, not of God, but that, if there is a God, she has a sense of humor.
I accepted, because I enjoy public speaking, but I have no idea what I will say. It's an interesting process to go through. What would I want to tell people that would be meaningful and interesting?
I'm thinking about talking about waiting, since that is sort of our motto this year. Talk about how waiting burns up your time unless you use that time well. We are waiting for the pups to mature, but need to enjoy them as they are now, and miss what they have already changed out of.
Maybe conscious waiting is what is called for...google Buddha and waiting and see what I can find!
A sermon. Pretty funny...
I accepted, because I enjoy public speaking, but I have no idea what I will say. It's an interesting process to go through. What would I want to tell people that would be meaningful and interesting?
I'm thinking about talking about waiting, since that is sort of our motto this year. Talk about how waiting burns up your time unless you use that time well. We are waiting for the pups to mature, but need to enjoy them as they are now, and miss what they have already changed out of.
Maybe conscious waiting is what is called for...google Buddha and waiting and see what I can find!
A sermon. Pretty funny...
Sunday, July 15, 2007
Saturday, July 14, 2007
Hah! It's mine now, all mine!!
Tizi graduated from Family Dog I class this morning, after a romp on the beach and breakfast at Kelly's. We were so proud! She is such a smart, cute, friendly little pup. We are just delighted with her!
Gail has been really tired lately. I think the dialysis is really wearing her down.
Gail has been really tired lately. I think the dialysis is really wearing her down.
4th of July
The party was great this year. The back yard was sunnier than in the past, because we took some trees down. But we had a great time nonetheless.
It is so much fun to have this party every year.
It is so much fun to have this party every year.
Tuesday, July 10, 2007
Tichka smelling the flowers
He's been tearing around with Tizi, rolling and tumbling in a roiling mass of puppiness when he stops a moment to smell how nice the hydrangeas are in the evening.
Tizi relaxing in the garden
After a rousing game of chew on my ear and slobber on your collar, Tizi takes a moment to contemplate her happiness.
Uh oh!
The two little rascals figured out how to get in the house and they had a grand old time making mischief! What are you gonna do? Here is Tichka, as innocent as he can be!
Mud =Fun!
This is an old picture of the puppies from January, but it is my favorite. Look how cute they are! Tichka is on the right and Tizi is on the left. We have been working in the garden, and they are covered in mud!
Update
I haven't been blogging much. Gail's blog has become the main way to tell the world what is happening, but it might be good for me to keep this one up as well.
Status report: Gail: She has been on dialysis since December 13th, almost 7 months. We never thought it would take this long. Her transplant coordinator says they just haven't been receiving type A organs. He said today that she is one of the top 5 or 6 on the regional list, so she could be the best fit for the next organ that comes in of her blood type. Or it could take some time. The more we know, the further off it seems, so that is a little depressing.
Robin and Sachi pick her up after dialysis every Tuesday and Thursday, which is of immeasurable value. They aren't available for the next three weeks, and it is just a bear trying to figure out the easiest way to get her home. I think I am getting it worked out tho, with a little help from our friends. I realized that it is easier for me to ask for help than it is for her. So I did, and everyone responded quite wonderfully.
Status report: Puppies: They are wonderful and smart and cute and rascally. They just turned 8 months old, and they appear to be willing to sleep a little later in the morning. That is a relief, because we were pretty much being awakened at around 5:15 every morning!
Status report: Me: I'm fine, I guess. Gail is doing the heavy lifting, and I am trying to support her. Sometimes I find myself being irritated by her passivity, but I think she is just tired. I will be so glad when the transplant is over.
I haven't been blogging much. Gail's blog has become the main way to tell the world what is happening, but it might be good for me to keep this one up as well.
Status report: Gail: She has been on dialysis since December 13th, almost 7 months. We never thought it would take this long. Her transplant coordinator says they just haven't been receiving type A organs. He said today that she is one of the top 5 or 6 on the regional list, so she could be the best fit for the next organ that comes in of her blood type. Or it could take some time. The more we know, the further off it seems, so that is a little depressing.
Robin and Sachi pick her up after dialysis every Tuesday and Thursday, which is of immeasurable value. They aren't available for the next three weeks, and it is just a bear trying to figure out the easiest way to get her home. I think I am getting it worked out tho, with a little help from our friends. I realized that it is easier for me to ask for help than it is for her. So I did, and everyone responded quite wonderfully.
Status report: Puppies: They are wonderful and smart and cute and rascally. They just turned 8 months old, and they appear to be willing to sleep a little later in the morning. That is a relief, because we were pretty much being awakened at around 5:15 every morning!
Status report: Me: I'm fine, I guess. Gail is doing the heavy lifting, and I am trying to support her. Sometimes I find myself being irritated by her passivity, but I think she is just tired. I will be so glad when the transplant is over.
Saturday, February 03, 2007
Sleepy
Dropped Gail at dialysis an hour ago. I am so overwhelmingly tired I am falling asleep over my chai
Friday, February 02, 2007
Red-letter Day
Let the record show that yesterday, February 1, 2007, was the first puppy-accident free day at our house!
Huzzah! Nazzaza! O frabjous day, caloo calay!
The puppies are awesome!
Huzzah! Nazzaza! O frabjous day, caloo calay!
The puppies are awesome!
Wednesday, January 31, 2007
Cooking
This cooking thing is such a drag.
Dana came over last night, and there wasn't much in the house to cook. I was distracted with the pups, and she ended up taking over the cooking. We found some old frozen vegetables, but they weren't any good. She heated up some rice and we found some potstickers. So that's what we had.
It occurs to me that I need to plan meals when we go shopping. i usually just buy whatever looks interesting. It's overwhelming to even think about.
Maybe I'll sign up for an email you can get that suggests meals and gives you shopping lists.
I am trying really hard, but it's not easy.
Dana came over last night, and there wasn't much in the house to cook. I was distracted with the pups, and she ended up taking over the cooking. We found some old frozen vegetables, but they weren't any good. She heated up some rice and we found some potstickers. So that's what we had.
It occurs to me that I need to plan meals when we go shopping. i usually just buy whatever looks interesting. It's overwhelming to even think about.
Maybe I'll sign up for an email you can get that suggests meals and gives you shopping lists.
I am trying really hard, but it's not easy.
Saturday, January 27, 2007
Mud Puppies
Needed to clear some brush from an area they like to play in, so I can see what the little rascals are up to. Took them outside with me, and we had a great time.
We were on such a roll, that we went over to the garden and started clearing out the old dead things that had bolted months ago. I think we cleared a lot of sunflower stalks and stuff. Very satisfying. And did they get muddy!!
We were on such a roll, that we went over to the garden and started clearing out the old dead things that had bolted months ago. I think we cleared a lot of sunflower stalks and stuff. Very satisfying. And did they get muddy!!
Wednesday, January 24, 2007
Moblog
I just got things set up to send blog entries from my phone. Oh brave new world. A million ways to say something, and very little time in which to say it!
Transplant Update
Our world has changed over the last two months. Gail was waiting for a transplant any day, but it didn't happen. She went into the hospital on December 13th, and had a cardiac cathether installed in her chest, and she has been doing dialysis three times a week since then.
It is working well, but it still sucks.
She got a call this Monday that she is back on the active transplant list, so we are once again on-call 24/7. It was sort of relaxing not being on the list, but this is better.
We are trying to get the back yard fixed for the puppies, and I kind of hope that they don't call her until that is done....
It is working well, but it still sucks.
She got a call this Monday that she is back on the active transplant list, so we are once again on-call 24/7. It was sort of relaxing not being on the list, but this is better.
We are trying to get the back yard fixed for the puppies, and I kind of hope that they don't call her until that is done....
One baba, two pups
We decided we don't have enough stress in our lives, so we got two puppies. They are the cutest smartest puppies in the world, and we are very very happy!
Tizi-n-Tichka were named after a mountain pass in Morocco. Tizi is a very determined little girl, and Tichka is a mellow laid back big boy. They are Swedish Vallhunds, and we are in love. !!
This is both of them. Tizi is in the front. She has very dark markings around her eyes. We call her our raccoon baby.
Tichka is behind her. He is very sturdy and looks like a plush toy dog.
Tizi-n-Tichka were named after a mountain pass in Morocco. Tizi is a very determined little girl, and Tichka is a mellow laid back big boy. They are Swedish Vallhunds, and we are in love. !!
This is both of them. Tizi is in the front. She has very dark markings around her eyes. We call her our raccoon baby.
Tichka is behind her. He is very sturdy and looks like a plush toy dog.
Friday, January 12, 2007
In memoriam: Charlie
Sweet Charlie died last night. He was the happiest, sweetest, goofiest dog in the world, and he will be dearly missed.
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