Recovery from transplant

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nycpetit
Posts: 262
Joined: Fri Apr 23, 2004 11:00 pm
Location: Miami Beach

Recovery from transplant

Post by nycpetit »

Well, it's been only 12 days post-op. I've had mostly good days. The side effects I've had were 1) from the thymoglobin I had at the hospital for 5 days...in the hospital they give it to you over a slow drip, say seven hours, and with benedryl and tylenol to counter the side effects (which are flu like symptoms, low fever, and itching. Well, I got those side effects after I left the hospital and they were no longer giving me those things to counteract the side effects.

2) I get a lot of low grade fevers, resulting in a lot of sweating afterwards when they break. Again, this may be from the thymo, as the itching finally subsided about six days after I left the hospital. But it could also be from the Prograf. I have had my dose elevated a lot. From 2mg in the morning and 2 mg at night, to 3 mg in the morning and 4mg at night. It's not going to stay like that forever, but they wanted a certain trough level.

3) I told you guys that I suffered terrible swelling, which supposedly is somewhat normal to get the kidney working. Well, that swelling really did a job on my right foot. It turned blue from the pressure and since it's gone down (the swelling) it's very, very sensitive to air, the sheets, etc. I can still walk on it, but it's going to take some ice and rest for a bit first.

Other than that. The incision doesn't hurt at all. I did not get staples, and the stitches are healing. Basically all the swelling with the exception of a little abdominal swelling is gone, and it's just the fevers, sometimes a headache, and the foot pain.

The biggest dilemma for me? The unit started talking again yesterday about the one month, three month, six month, and one year biopsies.

I was pissed off to say the least. I told the nephrologist before surgery that I was not planning on doing that. He says, "Well, when you have your one month biopsy..." And I was like, huh? I thought we already discussed this.

He says that because I am on the steroid-free protocol, have a living non-related donor, that it is encouraged to have it at least at the one month, and six month, and then maybe one year in order to see if there is any damage going on at the cellular level which would show up before it would at the blood/urine tests level. However, I also remember him telling me that it was not mandatory and that if there had been no health/bloodwork issues going on, that it would be understandable not to do them. And the very first neph I saw there told me i would be asked about this in the hospital and that it was not necessary or mandatory, but that it would be encouraged for research purposes. That down the road they could determine at what month things begin to change at the cellular level and in future patients only make that month out from transplant the mandatory biopsy month. It seems to me like I am getting differing info.

So far my creatinine has been 1.0 and 1.2 and my cholesterol came down, my red blood cells are actually climbing on their own, and everything else is in normal range, except my potassium went up again due to Prograf elevated doses and that I was eating every high potassium food in the book. They are not concerned with this, just to watch those foods for now and then it will come down on it's own.

So needless to say, I felt pressured by this. My mother comes in with me. And is NOT as educated on all the terminology as I am.While also a skeptic at times, like me, she is seemingly also more inclined for me to do them, because she sees it as precautionary. I see it as stupid and for their benefit. If I've had not problems then why have a biopsy?

Any thoughts?
Julie

Voluntary Biopsies

Post by Julie »

Well, I personally would tell them where to stick their needle and for sure it wouldn't be into my new kidney.
JMan
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Joined: Fri Apr 23, 2004 10:21 am
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Post by JMan »

:D:D I like it.. short, and to the point! (excuse the pun;))
"Dialysis! What is this? The dark ages!"
L. 'Bones' McCoy, ST"
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Rachel in NY
Posts: 650
Joined: Fri Apr 23, 2004 1:11 pm
Location: NY, USA,

Post by Rachel in NY »

I see your point.

Good idea.. bc just telling them "no" is pointless, as dr.'s hear what they want to, not what you tell them.

Puns intended.

Natalie.. great to hear you're doing okay otherwise... aside from those few issues.

~Rachel
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"When life keeps giving you lemons, get to work and make a tall frosted pitcher of icy cold lemonade."
Pam
Posts: 866
Joined: Sat Apr 24, 2004 8:13 pm
Location: Springfield, Illinois, USA

Post by Pam »

Hi Natalie!
As far as the biopsies, I don't know the answer. Do other patients find them very uncomfortable? Do you? Has it really helped determine problems early? Ask your doctor some questions about it. If it really has helped pinpoint early signs of rejection, etc. maybe it would be good to have them, but everyone is different and this is just my opinion.
Everyone is so on target about doctors! They sometimes think that you do not know anything about your own conditions (as if living with them every day doesn't give you SOME experience! :roll:) They only see you when you come in for a check-up or if something is wrong-YOU have to handle things daily.
I am glad that you are now on "the other side" of the whole experience, but this is when some problems do crop up-especially when you are on the higher doses of meds. Take heart in knowing we have all been there and will try to help in any way we can!
Blessings,
Pam
32 yr cadaver transplant recipient, now on peritoneal dialysis with the help of Audrey, my Homechoice machine... as of 4/3/09
Romans 8:28
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Anne in Va
Posts: 246
Joined: Fri Apr 23, 2004 11:28 am
Location: Virginia

Post by Anne in Va »

Hi Natalie,

Glad to learn your recovery is going well, you sound much more patient than I was with the initial adjustments!

Sorry you had problems with itching. Instead of the meds you had, I was given what my unit calls a "whiff" of steroids to counter any side effects. 10 days worth, then off.

I have had the sweating but no fevers. Actually they are actually hot flashes. When I went on PD I started menopause but no sweats. After transplant, they came on with a vengeance!

I am the opposite with Prograf. They had to reduce mine because of high trough levels. I now take 1.5mg am and pm.

Wow I am so sorry you have had such problems with your foot but glad it is on the mend. Again, you are very patient.

The invisible stitches are wonderful aren't they? The incision was the least of my problems and now it is barely visible.

Regarding the biopsy question, my two cents worth is to leave well alone. My unit, along with other units, was involved in the original research with thymo. People who opted for that protocol did have to undergo regular biopsies. Now that it has become standard protocol for most patients, there has been no mention of biopsies. My feeling is that they got enough information from the research study to show that routine biopsies during the first year are not necessary. My unit is also a teaching hospital and you would think that they would use any excuse for the fellows or residents to perform biopsies!

God Bless,

Anne
Michele in TN
Posts: 53
Joined: Sun Sep 12, 2004 8:21 am
Location: Nashville, TN, USA

Post by Michele in TN »

Hi Natalie!!! It looks like we practically went through transplant together! I went on July 29th. Well I went in the night before. My kidney was a cadavor and they've yet to mention doing a biopsy. But I assure you the minute they do I will shoot them in the head. No way am I going to compromise my kidney to a stupid radiologist (can't you tell I love them these days, ugh) with a needle. Now in the event of suspected rejection I believe you need one but for routine, I don't think so.
I am on Prednisone 5mg a day. Prograff 4 in the morning and 3 at night. Cell Cept 500 every 8 hours. I've not had too many side effects from the meds. Some night sweats and well obviously since I'm here insomnia. I'm still holding about ten pounds in my belly from the surgery but no where else.
How is your output? Mine is worrying me. It is always less than what I put in but the docs don't seem too concerned.
Take Care!
Michele, 30
Mom to Emily, 11
Wife to Chris
Transplanted 07/29/04
Creatinine 0.9 2/07
stopping prednisone due to severe renal osteodystrophy 11/06
nycpetit
Posts: 262
Joined: Fri Apr 23, 2004 11:00 pm
Location: Miami Beach

Hi Michelle

Post by nycpetit »

Michelle! I was actually to have originally had my transplant July 29th. But I had to change hospitals (a long story there).

I think, not sure, but I think they are not concerned with your output at this point because you got a cadeveric kidney. They take longer to completely work. And another person who had a cadeveric transplant the day before me is also not yet working 100% but they are not concerned. If you had NO output, that would be different. How much is your output altogether? Likely you are still producing enough that they are not worried. And that fluid retention around the kidney is also probably part of the reason you are not yet eliminating as much as you put out. The kidney likes to be "floating" for a bit before it starts to eliminate. But I would imagine those ten pounds are uncomfortable!

As for the PD catheter. It would seem to me that if they want to take it out, that is your sign that all is going as it is supposed to for now. They wouldn't take that out now if they thought it might be premature. Try to trust a bit in what they tell you.

I am taking 3 Prograf in the am, and 3 Prograf in the pm, Cell Cept 500 mg in the morning and evening, and Valcyte, Bactrim, Mycelex troches, and that's all. They took me off the Procradia bp medicine as i don't really need it. The Prograf will eventually come down to 1 and 1 and the othe meds aside from the Cell Cept will be discontinued gradually.

As for the biopsies, I managed to work out a deal with them. My creatinine is usually 1.0 or 1.1 and so if it goes up to 1.4 without any reason (such as dehydration or medication changes) then I'll do the biopsy.

My urine output is okay, but I have to remain vigilant about drinking enough. Although I was never on dialysis, I am not a big drinker (of water or alcohal). And I can always tell when I haven't had enough.

Let us know how you are, and stay strong!!

Natalie
Michele in TN
Posts: 53
Joined: Sun Sep 12, 2004 8:21 am
Location: Nashville, TN, USA

Post by Michele in TN »

I am having a hard time with drinking, too. But I was the exact opposite on PD! I was always drinking too much then now I feel sick after I've only had three liters. They want to see me drink between 4 and 6 a day. I try, I try really hard then I feel siwishy in my tummy.
Michele, 30
Mom to Emily, 11
Wife to Chris
Transplanted 07/29/04
Creatinine 0.9 2/07
stopping prednisone due to severe renal osteodystrophy 11/06
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