Definitely better

We went back to UCSF yesterday for Transplant Clinic. It was good. All her blood counts are perfect, her temp is stable, both organs are doing what they are supposed to do, and everything is looking good.

They reduced one of her 17 medications from everyday to Mon, Wed, Friday; reduced the number of times every week that she has to go to the local lab for blood draws from every Monday and Thursday to just Mondays, and we don't have to go back to the clinic in SF until May 20th. Plus they approved the reduction to the amount of blood pressure meds she is taking.

So all in all, it was a very successful visit.

She is still tired, but it feels more like she is just recuperating rather than anything being wrong underneath or on top of the surgery.

I am frantically trying to make up for the three weeks lost at work. Whimper!!

Better?

Hmmm...Gail seems a little more cheerful this morning. Maybe between the increased anti-depressant and the lowered blood pressure medication, things are moving back into place. Hope is peeking out!

Blood Pressure

I have been worried about Gail's mood. I know that she is only 3 1/2 weeks out from surgery, but she is very low energy and not her usual cheerful self. We have adjusted one of her meds to counteract a drug interaction we know about, and that has been a little bit helpful.

Then I thought maybe her energy was low because she red blood cell count was low. Often when she was on dialysis she would start getting very low energy when her blood count was low. They would put her on ProCrit, and she would perk up again. So we went in to see one of her very nice nephrologists to get her set up for ProCrit in case her blood count was low. But when we were there, her latest blood work showed that her blood count was in the low/normal range. So that doesn't appear to be a problem right now.

But the doctor was just checking her over before we left, and her blood pressure was only 70 over 40! She was fine, not dizzy or anything, but the blood pressure needs to be high enough to ensure that the pancreas is getting good blood flow. The doctor recommended that she be admitted to the hospital overnight to get a saline drip. Gail did NOT want to do this, and I could see she was getting ready to dig her heels in. So I suggested that we go out to the waiting room, get her a big ol' bag of Cheetos and a lot of fluids and let her tank up. Then we could check her pressure in an hour or so.

Fortunately, this worked, and we were able to go home. We went back in to check it this morning, and it was OK.

It looks like her new kidney is doing its job really well, and she may not need so much blood pressure medication. Anything we can do to reduce the amount of medications she is on would be a very good thing.

And maybe low blood pressure has been contributing to her low energy level.

It is hard for me to gauge whether I am just impatient for her to get well, or if her energy level and affect really are being negatively affected by something. We are going back to UCSF for transplant clinic on Tuesday, so we will discuss all these things with them then.

As for me, I am very tired. Work is overwhelming, and it is very hard to spend an entire unplanned morning at the doctor's office when I needed to be at work.

If I can just make it through June....

Home Sweet Home

Things are going well, finally.

I am back at work a lot, and Gail is staying at home with the pups. She is still really tired and low-energy, but she is not in much pain. She takes herself on a little short walk most days. She has to have blood drawn locally on Mondays and Thursdays, and that is time-consuming, but not a big deal.

So things have settled down. I think now she just has to recuperate from the surgery itself. The transplant center says all her blood numbers are perfect.

Things will be blissfully boring for a while, we hope!!

Jiggity Jig!

The docs came in said that they didn't get enough tissue from the pancreas biopsy to rule out rejection. But her temps have been normal for 36 hours and all her blood work is "perfect." So they are discharging her this afternoon and we are fine with that.

We are going to be more careful about not tiring her out and screening people for colds. The docs said that we should avoid people with flu or diarrhea (duh!). They also said to avoid babies because they never wash their hands. They didn't think masks were necessary unless we are hanging around people with TB.

So I think we are heading home to take up our lives again.

I asked Gail how many nights she thought we have been home since the surgery, and she said 3, which is exactly what I would have said. But we were home for nine nights! It seems like we have hardly been home at all.

It's gonna be great!

April 9th

Gail had her biopsy this morning around 10. Then she had to llay flat on her back for six hours. After a few hours she got to eat something, but couldn't keep it down ( think Vesuvious). Once that was over she felt OK.

We haven't received the results from the biopsy yet, but we think we will get them in the morning. And w think we will come home tomorrow. Finally.

April 8

All the test results have come in (including the CMV) and they are all negative. So we know lots of things that are NOT causing her elevated temperatures but not what IS.

So she will have a pancreas biopsy tomorrow with ultrasound. If they can get the tissue they want, they will be able to tell if there are any early signs of rejection. If they do find indications of rejection, she'll stay here for a few more days while they give her prednisone.

But we don't think that they will find any rejection. We think that the biopsy will turn out fine and they will send us home on Thursday without ever knowing what is causing the fevers. The doc said that sometimes people with pancreas transplants have unexplained fevers during the first month. And I think that is what we will end up with.

We have been playing Scrabble. How would you like to play with someone who plays VIZIER one day and ZEALOUS the next? I keep thinking that her medical situation will give me an edge in Scrabble, but no such luck.

It got so bad today that I went to a yarn store and bought some yarn and needles. Gail started knitting lessons and I am working on a nice simple washcloth. Now, that's scary!

Quiet Day

Regardless of what the blog header says, it is about 8:30 on Sat night the 5th of April.

We have had a quiet day at UCSF. Gail had an ultrasound this morning and a CAT scan this afternoon. Lots of tests have been taken, but no results yet on any of them.

I don't think we will be home until we get some results. Her temp has been stable today at about 99 degrees.

They tried to give her a new IV today, but couldn't get it seated right so they will have to try again tonight. Her arms are really bruised and sensitive so she is pretty apprehensive about it.

I am pissed because she never got fed today. I know she couldn't eat before the CAT scan, but that was hours ago and they have brought her nothing. The cafeteria is closed so I can't get her anything.

That is the only thing that hasn't been handled well here, and I don't like it.

Back to UCSF AGAIN!!!

Gail is resting now. She is receiving a unit of blood, and that is making her feel better. Her temp went up to 102.2 again, and they put ice water floaties around her. That brought her temp down to normal, so that is good.

The medical transport will be here at 9 pm to take her to SF. I'll follow in our car.

Musing

I think we are all so delighted with Gail's progress that it is easy to forget what a complex and significant ordeal she has undergone. She IS doing great but she still has a long way to go.

Back in the ER

I think everything is going to be OK, but it is a little scary.

Gail called me out of rehearsal and told me she was in trouble and needed help. She had gotten chilled and checked her temperature. It got as high as 102.2. She called UCSF and they said to bring her into the Emergency Room.

So we've been here almost 5 hours. Her temp is normal now and her blood work looks OK. They did an ultra sound of her organs and they looked fine.

So I think they are just going to keep her overnight for observation. Hopefully they won't send us to UCSF.

She's sleeping now. I hope they have all her meds for tonight...

I hope we are able to figure out why her temp spiked. All I can think of is maybe she didn't stay hydrated enough. But I don't know if that can cause a temp to spike.

Church Check-In

Gail felt up to going to church yesterday. We were a little nervous about people welcoming her back too boisterously, so we sort of snuck in late and sat at the back.

It was Dave's last service before his sabbatical, so everybody was there to see him off. As she was welcoming everyone, Heather announced that she had seen Gail and me come into the sanctuary, and that we were back for the first time after Gail's successful kidney and pancreas transplant. The room filled with the sound of people clapping, and then they started stomping their feet (led by the choir, I am sure), and then they all stood up and clapped and cheered some more. They kept clapping for a really long time. It was an incredibly sweet moment and meant so much to us.

We stayed through communion and then left early. Gail was pretty tired but really happy that we went. She rested or slept for the rest of the evening. She was hurting a bit, so she took something stronger than Tylenol, which she rarely does, and that made her feel better. We went out a little this morning, and she has been sleeping most of today.

Tomorrow we go back up to SF for the transplant clinic. I don't think she will get her staples taken out until next week, but her incision is beginning to look very good to me!

Home Sweet Home

We had a very restful night in our own home last night. Gail is feeling well enough to go out to breakfast this morning. We even walked briefly around the farmers market. I bought her some brussels sprouts, which I don't like, but I guess I'll cook them for her. (Yech!)

It is wonderful to be home again. It is wonderful to be typing on a full size keyboard again. I did all the blogging for the last two weeks on my phone, and it wasn't the easiest thing to do. On the other hand, it was way easier than carrying even a laptop around.

We're trying to get organized around here! Enormous quantities of new medications to bring in and a surprising amount of old meds to get rid of somehow. We have a bunch of vials of insulin in the refrigerator taking up space that she doesn't need any more! Other diabetic equipment and supplies as well. It's pretty amazing.

Thanks to all of you yet again for your support. I have about 80 emails saved that we got over the last two weeks. I am going to print them out for Gail to read again. It meant so much to both of us to hear from you!

We're Comin' Home...Again!

The docs cleared Gail to come home this afternoon. They'll remove the IV and let her go. I am really glad we came up here. She is much stronger and more well rested than she was when we came home before.

She looks so good that it is hard to remember that she has undergone such a huge surgery.

When they remove the IV, it will be the first time in 5 years that she hasn't had a tube of some kind inserted in her body.

I am so happy to bring her home. Again. And better than ever.

C Dif Free

They just popped in and told us that her test for Clostridium Deficile turned out negative, so that is good news.

Now we know one thing that didn't cause her problems. We still don't know what did cause them, but it's a step in the right direction.

But wait! There's more!

Things are very quiet here. Gail is napping. She is still having bouts of diarhea, but she is is on a saline IV so we aren't worried about dehydration.

WWill probably be here till Saturday, but it's fine with us. I have decided that they didn't discharge us on Sunday. They just gave us a 2 day leave for a little R+R. We've come back to finish ourvtour of duty.

Plus we are in a private room and that is infinitely more comfortable.

It's not best hotel we've ever stayed in. But it's not the worst, either!

Small Setback

We are back in UCFS tonight. Gail was having diarhea and vomiting all day. After consulting with her doctor we decided to readmit her so they can give her an IV to be sure she doesn't get dehydrated.

She is a little sad and a little scared, but we are both glad she is here. This way no damage will be done while they figure out what's going on.

Our friend Mary said, That's just what happens.One step forward, one syep backwards, and the tango continues.

And the dance goes on!

Back for our First Check-up

Gail is doing great (how many times have I said that in the last 8 days!!). Her strength comes back a little each day, and she is sleeping well at night. Yesterday I took her to the Medical Clinic here in town for a blood draw. She will have to go in every Monday and every Thursday for the foreseeable future to get blood drawn. The Transplant Team will monitor her this way.

Today we are driving back to San Francisco for her first transplant clinic. We'll do that every week for a couple of weeks and then it will taper off.

We are learning her new medical regimen which mainly involves the ingestion of 17 or 18 different drugs at various times of the day. It is definitely doable, and will soon be second nature. At the moment, it is taking quite a bit of concentration and much fumbling of papers.

Headed home

Headed home
Originally uploaded by gr8what

Gail came home on March 23rd wearing the socks Sarah knitted for her so many months ago. She is doing great. Our deepest thanks go out to all of you who wrote and called and visited. Your support made all the difference!

And words cannot express our gratitude to the person and his or her family who donated her new kidney and pancreas. The expanse of our joy was deepened by your sacrifice.

Look ma! No central line in my neck!!

Look ma! No central line in my neck!!
Originally uploaded by gr8what

We measured the success each day by how many lines and tubes were removed. This was a great day, because the central line was removed.