Too much of a good thing: post-transplant erythrocytosis (PTE)/Polycythemia

[Meinuk]

Well, just over two years out and I have my first complication.  Post-transplant erythrocytosis (PTE)/Polycythemia

Bad news, it is a complication of increased red blood cells.  Good news, it is easily treated.  Profolayxis Phlebotomy (aka good old blood letting - bring on the leeches I say!!)

I will track my numbers and reactions to treatments in this thread (should anyone else come accross this complication)

As it stands, I was diagnosed by the rednessof my face !?! when I walked into his office.  The bloodwork simply confirmed it.  I have three kidneys, my two native PKD kidneys which are possibly still producing EPO, and my new boy kidney that is doing all of my blood cleaning for me (and produces EPO as well)

About post-transplant erythrocytosis (PTE)/Polycythemia

http://content.karger.com/ProdukteDB/produkte.asp?Doi=280155

3 patients with renal transplantation who developed polycythemia presented normalization of the hemoglobin levels immediately after nephrectomy of the native kidneys. This observation induced the authors to study the role of the native kidneys in the genesis of polycythemia in recipients of renal allografts. Comparison was made among 32 patients submitted to renal transplantation, with maintenance of native kidneys (group I) and among 31 under the same conditions, but without the native kidneys (group II). Both groups were comparable according to age, sex, rejection crisis incidence and immunosuppressive therapy. It was observed that the hemoglobin levels of group I were significantly higher (p < 0.05 to p < 0.005) than those observed in group II, from the 3rd to the 30th posttransplantation month, becoming comparable from the 36th to the 54th months. The hemoglobin production, measured by the kinetics of labeled iron (59Fe), was higher in patients of group I. The authors concluded that the native kidneys are responsible for the observed polycythemia after a kidney transplantation.

[phyl1215]

Thanks for posting about this and keep us updated.

[okarol]

Wow, your blood would be great to share with an anemic patient. Maybe you could bottle and sell it.
Just kidding    I hope the treatment is easy and resolves the problem.

[rocker]

DH had this after his first transplant.

And to answer the question, no, he was explicitly told the blood would be discarded due to the levels of drugs in it.

And we too made the jokes about the leeches. 

[Meinuk]

It is so annoying that the only reason the bloodbank has to discard my blood is because of the prograf (well, and international travel...)

So far, all I have is no symptoms (that I notice) other than a red face (which ahem... some attributed to wine...).

The trips to the blood bank will be every time my Hematocrit (HCT) hits greater than 50%

http://en.wikipedia.org/wiki/Hematocrit

Today, the day after, it was 47% we'll recheck again next month.

I am looking forward to being pale.  I hear that the Vampire look will be good for Summer 2011

[jbeany]

Well, at least you can safely have more wine!   

[Chris]

I'll use some of your blood, I need some HCT.
 
When I asked about donating blood, I was told I could not donate, not due to transplant, but due to having diabetes and the use of beef and pork made insulin.
 
Bet they'll take my blood in an emergency situation though!

[Wattle]

I like how your Dr immediately diagnosed the problem by the redness of your face. Did he ask if you had been out for lunch, had a few drinks or run up the stairs?   

How were your HCT levels on dialysis? I was on Aranesp years before starting dialysis. Since my transplant my levels have generally been good. I had a native PKD kidney removed last July and the levels have dropped a little.  Is there any talk of you having a native PKD kidney removed?

47% is not much of a drop. Maybe you need some leeches at home!   

[Chris]

Leeches, the new bedazzed look?

[Meinuk]

My appt was at 11am and he just looked at my face and knew.  No questions were asked.  I have been travelling a lot lately, and it has been a really busy few months, I was just thinking that I was burning the candle at both ends a bit too much. I think that having a hiccup like this is just a good reminder that we need to remember that our bodies need some extra care.  (After my clinic visit, when I went to get my Rx filled, I went for a massage  )

Bedazzled with Leeches... hah!  The truth is, I am terrified of leeches.  When I was growing up, there was a nice little stream to wade in, and well, you guessed it.  It put me off leeches for life.  Shudder.  (But I will joke about them in the abstract!)

Over the past five years, my HCT/HGB have been all over the map.  Sadly, when I was on dialysis, I was at a Davita Clinic that overdosed my EPO, and wouldn't give me iron, so my baselines were horrid and my hair was falling out. (yes, I am bitter - there is no reason that dialysis and treatment should be so irresponsible)

We are going with phlebotomy as an acute Rx, but we're really hoping that the Diovan takes the edge off.  I had been trending high (43-45 for the past six months, so my Doc was suspecting that I'd spike over 50.) No one was really surprised.  (OK, I was surprised...)

I'm pretty adamant about keeping my native kidneys.  Of course, I don't always get my way, but as long as I stay on top of my symptoms and my bloodwork, all should be OK.

On a great note, my creatinine was 1.1!

Back to work and coffee for now.  Next blood draw will be in March after I come back from Disney. (Then my face will be red from flirting with Pluto!!!)

[Bill Peckham]

Have they measured the level erythopoetin in your blood? It isn't a definitive test because levels vary from person to person and they probably don't have a baseline because it isn't routinely done. But you would want to see a high number for it to be in concert with the theory.