miocean

Kidney Biopsy

5 posts in this topic

After 15 months with my new kidney my nephrologist wants to have a biopsy because my creatine is jumping around. I could give you a lot of numbers but they wouldn't mean anything to most. My neph says I am not spilling protein and has emphasized that this is NOT rejection, but could be prograf toxicity and perhaps my level should be dropped. I have consulted my transplant center, as has my neph, and they are in agreement with the biopsy but they also suggested an ultrasound and a renal scan.

 

I know with the warmer weather this could be a hydration issue, but I have been drinking lot of fluids.

 

The decision is where to have this done. I could have it locally, performed by a DOCTOR who is excellent, part of my group, and recommended by my transplant center at a hospital that is part of their group but not a transplant center (and doesn't have the best of reputations, but bad things have been said about all the hospitals involved, even my transplant center). I could have it done at any other local hospital but it would be done by a radiologist and they are not transplant centers. Or I could travel back to my center, which would involve several trips (about 2 hours each way) and it would be done by a radiologist. When I mentioned going back to the transplant center my nephrologist commented that they have not been following me the past year, that he has. He understands my feelings about the hospitals and said I could have it anywhere I want. Of course, all options require an overnight stay to monitor bleeding with worse case scenario a transfusion.

 

I have pretty much decided that since my transplant center and nephrologist highly recommend the doctor and I know him to be excellent that I would have him do it ON THE CONDITION that if anything happens to me I am to be transported to my transplant center. I had a biopsy locally when this all first happened and it was no big deal. My nephrologist has even said that I don't even need to have this done but he has been absolutely wonderful at monitoring me so if it is his opinion to do it, I will. It is very unusual for scleroderma to take a transplanted kidney, but it is always a possibility.

 

The thought of going back into one of those germ factories is really discouraging. I have managed to stay out of the hospital for a while, except for my transplant.

 

Any feedback or advice is appreciated. If there are any questions I should be asking, let me know.

 

miocean


ISN Artist

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Hi Miocean,

 

Wow, that's a complicated situation. If it were me, I'd have it done by an experienced radiologist, because they are full medical doctors that have specialized in doing things such as kidney biopsies, so they would much more likely have far more experience in kidney biopsies than most regular doctors. However, the individual experience and success rate of each doctor in that particular procedure would mean the most to me, and it is fair game to ask for their track records ahead of time.

 

Personally, I'd rather not be transported in the event anything went wrong. Too much can go wrong during transport. I had a relative who repeatedly got reflux pneumonia (which is very often fatal) because they would inevitably lay him flat during transport, regardless of what the instructions were. That's not to scare you, but just to point out that, as much as humanly possible, you should have it done in a facility you can trust, in the first place.

 

I'm very surprised that you haven't had any biopsies since transplant. With lungs, they required Gene to have lung biopsies every two months for the whole first year after transplant. Luckily it was only a one hour recovery after each surgery, so it was less of an ordeal than you'll go through; and he always had them done at his transplant center, but his transplant center is local for us. Ironically, they have to keep a close eye on his kidney function because the transplant meds he's given put him at very high risk of kidney failure, so kidney transplants are a very common procedure (either sooner or later) after lung transplants.

 

Have you inquired as to whether you could postpone the procedure for a little while (a month or two), to see if things clear up on their own accord, or to at least be sure you are extremely well hydrated before your next test? We keep a daily transplant checklist for Gene, and one of the things is a series of boxes to indicate how many non-caffeine fluids he has had each day, because that is so vital with the transplant meds and it is such a terribly easy thing to unknowingly skimp on. Even with his daily reminders and check boxes, and doing his best, he has fallen short of the mark on some days, especially busy days.

 

A bit of a postponement and retesting might spare you the whole thing -- or retesting might prove the necessity for the biopsy, in which case you'll have a plan ready to implement for any/all future biopsies. Here are some warm hugs to see you through:

 

:emoticons-group-hug:


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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Hello Miocean

 

I just wanted to say that I hope the biopsy goes well, whenever you have it, and that you're back here in no time so we can celebrate the good results with you!

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

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International Scleroderma Network (ISN)

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Hi Miocean,

 

I forgot to point out in my earlier post that it is extremely common for people to think that radiologists are the same as radiology technicians. Radiologists go to full medical school plus then they go through advanced training beyond that; it is a medical specialty -- not someone who administers x-rays or MRIs, for example. I would also shudder to have an x-ray tech take a little stab at doing a kidney biopsy! :blink:


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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Hi Miocean,

 

I also want to wish you all the best for your biopsy and hope everything will go as smoothly and easily as possible for you.


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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