Transplant update

[tigtink]

It has now been about 3 1/2 months since my transplant. My creatinine has been holding steady between 1.0 and 1.1, potassium, calcium, and CO2 normal, and hemoglobin finally up to 11.1. Next week I have the first of two iron infusions, so hopefully the hemoglobin will rise even higher once my iron levels are back to normal. The first two and a half months were hard, but I am feeling much more like my old self now. I am back doing water aerobics with my friends three days a week. I am getting my office at home ready for tax season (I am a CPA working part-time from home). I am actually looking forward to tax season and focusing on something besides my health. I went to Wisconsin for my 3-month clinic appointment on December 18. I was only at the transplant center for about an hour (shortest transplant clinic appointment ever!). The only issues we are still having are low iron, low (but stable) WBC from the meds, and a change in my Valcyte. They had me on one pill a day of the Valcyte in the beginning. A couple of weeks ago they decided that with my very good kidney function I should be on 2 a day, but that high a dose would tank my WBC to a dangerous level. They were afraid the lower dose would lead to CMV resistance to the Valcyte, which is the best treatment should I contract the virus. So they had me go off the Valcyte completely. I will need to have weekly blood tests for CMV until March so they can monitor it. My donor and I were both positive so the risk is lower than if I had been negative, but I am still at risk. Once they stopped the Valcyte my hemoglobin climbed dramatically, so I suspect it was keeping it low all this time. All in all, I am doing much better than I thought I would this early on.

That's not to say this has been a smooth ride. The surgery itself was a breeze. I was home at my sister's house in three days, feeling good with no pain meds. A few days later, after the prednisone got out of my system (I was on a rapid withdrawal protocol and discontinued it completely after six days) I started feeling really tired. Then suddenly I started having severe bloating and chronic diarrhea from the Myfortic. By the time I went to my three-week clinic appointment I was severely dehydrated, my creatinine jumped, and my hemoglobin tanked. They admitted me for six days to rehydrate me, restore my electrolytes, and rule out rejection or any kind of virus or infection. From day one, they suspected the Myfortic was the culprit, but they were not going to let me go until they ruled out any other issues.

The next several days in the hospital were filled with IVs and endless tests. I was given IV fluids, IV potassium, IV calcium, IV magnesium, and IV sodium bicarb. I needed two blood transfusions and two iron infusions to bring my hemoglobin up. I felt like I had checked into Jiffy Lube for an oil change and fluid refills! Then came all the tests: an ultrasound, about a dozen stool tests, and endless blood tests for every sort of virus and infection known to man. All came back negative. They cut the Myfortic in half. The creatinine started coming down once I was hydrated but they were still considering a biopsy. I still had diarrhea so I was worried about going home and getting dehydrated again. They did an upper endoscopy and colonoscopy to rule out CMV and any kind of internal bleeding. Again, all results came back normal. Finally the creatinine dropped low enough that I avoided the biopsy. My electrolytes and hemoglobin stabilized, and they released me with instructions to take Imodium for the diarrhea.

Things stabilized after that, but they wanted me to stay near Madison until my next clinic appointment. At that appointment I had the stent and remaining staples removed. They increased the Myfortic by one pill a day. I still had diarrhea, but I was able to keep myself better hydrated. By then my labs looked great, so after 6 weeks in Wisconsin I finally made it home to Michigan.

Since then I have steadily improved, but there have continued to be medication adjustments and various other issues. As is typical, my tac levels have jumped all over the place but seem to be stabilizing for now. I tested positive for a UTI soon after the stent removal, so I had to take a week of Cipro, which temporarily increased my creatinine. My hemoglobin was stuck in the low 9's so I was pretty tired most of the time. But shortly after I came home, the diarrhea suddenly resolved, after 7 miserable weeks. What a relief that was! My appetite was pretty poor for a time, but I've lost more than 20 pounds since the day of the surgery, so I wasn't complaining. Next, my WBC dropped very low, so they decreased the Myfortic to two a day and cut the Bactrim from daily to three days a week. With all the med changes my appetite has improved and my hemoglobin rose. I began to feel better--then another UTI and another week of Cipro. That is done now and I am feeling great.

It has been quite a ride so far, but it feels like I have come a long way. I have a lot of faith in the folks at UW, and I am happy with the care I am receiving. It will always be a day-to-day thing, especially for the first year, but so far so good. I am looking forward to the New Year!

[iolaire]

Thanks for the update.  I wish you and your transplant the best in the new year.

[MooseMom]

Goodness gracious mercy me, tigtink!  That's some story.  It never ceases to amaze me how everyone has such a different post transplant story!  Yours certainly has had its villains!

It's all such a balancing act, isn't it.  You're treated for one thing but another issue pops up. 

You've really been through the mill, haven't you.  I cringe just reading about all of the tests you had to endure, but it is certain true that there is great value in the process of elimination.  It's important to know what the problem is NOT, if you see what I mean.

I had a problem with Myfortic, too, in that about 3 months post tx, my level of a particular wbc was SEVEN when it should have been in the thousands!  After two shots of Neupogen, though, everything went back to normal.  It had been determined that Myfortic was the culprit.  Everyone blathers on and on about tac that it is sometimes easy to forget what Myfortic can do to you.

I am thrilled to hear that you now seem to be on the right track heading into the New Year!!!  That's just fantastic!  You deserve an easier road ahead; you've done all of the really hard work, and now is the time to get your life back.  I'm so pleased for you and hope that the road ahead is straight and narrow on the kidney front.

Thanks so much for the update.  It was very interesting, though at times cringeworthy, to read.  Please give us more news when you have some, especially the "Had labs today and all is well!" variety.  No news is good news!

 

[kristina]

Many thanks tigtink, that was a great update to read and I am very grateful that you took the time to let us know.

My first three months were very similar to yours : I also battled with two infections, one after the other and I was also very lucky to meet a very caring medical team. And ... after my first year they still make it very easy for me to show up whenever there is something that does not feel quite right for them to check up and that knowledge alone really helps already such a lot!

Like yourself I also had some issues with some of the medication and thankfully they all have been now been greatly reduced.

My first year was a bit of a "bumpy year" and I was not the only person who was wondering whether or not it might work and turn out alright, but my body has now begun to slowly get better bit by bit and day by day ...

It seems that with some people it takes a bit longer than just the first year and whenever I don't feel quite alright, I just "park myself" on the sofa and read something, do some crosswords or watch a silly film on youtube, especially when I feel too tired to read.

Because of my two infections right after the transplant my doctors asked me to drink 3 litres of liquid every day = i.e. two cups of coffee 320 ml every day and then one cup 320 ml of Almond Milk and one little cup of tea (check up with doctors first) and the rest is just plain water. At first it was a bit difficult to drink such a huge amount of liquid every day, but slowly my body gets easier with it. After all, during dialysis i was only allowed to drink 500 ml of liquid every day ...

I send you my best wishes for 2020 and hopefully your first year is going to get better every day and I send you my congratulations to your new way of life and take care. Good luck !


     












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[tigtink]

Well, MooseMom, in fact I had labs drawn today: creatinine 1.03, all other values normal on the BMP. It has been probably 35 years since I have had a BMP that wasn't flagged for abnormal values. Still low WBC but other labs are stable and hemoglobin should go higher after the iron infusions. It is exciting to see labs like that week after week.

The only really scary part was the day I went in for my first follow up clinic appointment at the three-week mark. I had plans to go back to Michigan the following weekend. I received my labs on my phone before meeting with anyone at the clinic, so I knew going in that I likely would not be going anywhere soon. They were pretty freaked out because the creatinine had gone from a low of 1.51 up to 2.57. I feared rejection or damage to the new kidney. By the time they got me to a room, everything tanked. Calcium, potassium, and sodium bicarb were way too low and my hemoglobin was only 8.3. I felt beyond wretched and was relieved to finally get into bed. Slowly, as the negative results kept piling up and my creatinine started to rise, I began to realize the Myfortic and other meds were probably the main issue. It became less and less likely that the new kidney was the problem. Every day the labs got better and better, so I kept my hopes up. It was discouraging because they would not reduce the Myfortic or address the diarrhea until they ruled everything else out. Meanwhile, I am dragging a heavy IV pole while two IVs are attached to my arm to make it to the bathroom every few minutes. It was frustrating as all hell. But everyone on the ward was so friendly and encouraging that I managed to get through it. Whenever I got too down, I would listen to the Life Flight helicopters coming and going and remind myself that my main problem was diarrhea. I knew in a month or two this would all be just a bad memory. It was the people in those helicopters who were having a really bad day.

I wanted so much to go home to Michigan to my cats, but I trusted the judgment of the UW team to decide when that would be feasible. I left four cats in the care of my best friend, so I knew they would be well-cared for, but Jasper, my oldest, was terribly traumatized and started peeing on the bed upstairs. I am proud of myself for deciding to have it done in Madison knowing I would need to leave my cats. When I first got on the list I had nine cats. I had no idea who would care for them. Then my friend came and lived with me for over a year and the cats got used to her. Gradually since then the older ones have passed on, so I felt better about leaving them in her care. Jasper hissed at me when I got home and would not go near me for two days. But all is well now, the house has been cleaned thoroughly, and the peeing outside the litterbox stopped. Jasper is again cuddly and affectionate. The others have forgiven me as well.

All in all, the problems I have experienced to date have not been serious, and they are all common problems early after a transplant. I won't deny it was a hard time for me, and at times I wondered if I would ever feel decent again. But I have a great support system and I got through it. After all of that, I figured it would be a year before I started feeling better, so it was a nice surprise when I began feeling more normal and resuming my regular routine at about the 3-month point. It gets a little better each day.

Kristina, I too had to train myself to drink such large volumes of fluids, but once I saw what a difference it made in the labs, I committed myself to the three liters a day. By now, though, it is part of my routine. I am sorry you had so many issues after your transplant. It is amazing how differently we all react to the surgery and the medications. I think for me, my body never liked the Myfortic. It was only when they finally reduced the dosage that I started feeling human again. The surgery itself was for me the easy part. I am so glad I read all the posts here on IHD. I was much more prepared for these complications than I would have been otherwise.  So I am hopeful going into the new year, and grateful IHD has been with me along the way.

[MooseMom]

Well, as long as your cats have forgiven you, life is good!  Nice kitties and creatinine 1.03...what a way to start a new decade!

Congratulations, tigtink.  Here's to an IV-less 2020!

[Alexysis]

Your story has reminded me why I've yet to put myself back on the active transplant list. At least with dialysis, you know what you are getting into; get a transplant, and who knows if you'll be able to keep your job? Oh, well, when I retire, maybe I'll put myself on the active list. Maybe my last years will be dialysis-free....

[MooseMom]

Your story has reminded me why I've yet to put myself back on the active transplant list. At least with dialysis, you know what you are getting into; get a transplant, and who knows if you'll be able to keep your job? Oh, well, when I retire, maybe I'll put myself on the active list. Maybe my last years will be dialysis-free....

That's a very valid point.  Reading your post on another thread makes me think this is a good reason to think long and hard about tx if you are now in secure employment despite being on dialysis.  There are so many things to consider, and what is right for one person may not be for another.