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.