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Complicated case. . . .

sdahnke profile image
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Hi. My name is Stephanie. I am a kidney transplant patient (2012) and I am hoping to find some help on what I should do. I recently was diagnosed with a pulmonary embolism. My right cephalic vein (arm) is completely occluded. I have been to see a hematologist but she doesn't seem to be interested in helping me since all my blood work is unremarkable as to a cause of the clots. I am currently on coumadin for the treatment with no end in site. I am still having chest pains and shortness of breath. There is also a good chance that I could get more as the one in my arm goes away. A filter is not an option for me due to the location of the clot in my arm and it not being a DVT in my leg, With no cause known and the possibility of their being more and also my hematologist not seeming to care, I am kind of at a loss as to what to do.

Also with my nephrologist, we were trying to slowly get me off of prednisone because of the horrible side effects I am having from it. I was changed from cellcept to everolimus to help with painful diarrhea and also to start the weaning process of the prednisone. Now with the clots, I was taken back off the everolimus and put back on the cellcept as a precaution because they have no idea on the cause of the clots which means that I can't wean off the prednisone. So I am now having the painful diarrhea again from the cellcept and it might be for no reason. I am just looking for any kind of advise on what I can do for myself since I have to take control since my doctors don't seem to care.

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sdahnke
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daisyd profile image
daisyd

Might not help but look at the hughes syndrome web site, on here or hughes foundation site, where you see if some of your clots could be caused by this

Wishing you well, people are not always tested for this and sometimes blood comes back negative, as the test is not as good as it needs to be yet

Rousseau profile image
Rousseau

Hi Stephanie, I'm sorry to hear about your difficult circumstances. I'm afraid I don't have any advice to offer clinically. Your medical situation is obviously quite involved. My feeling is that you should push for better support from the NHS. You could make a complaint, although this is often not very productive. You could change your GP and see if you could better support. You could ask your local MP to take up your case. The huge public resources of the NHS should be available to you. You should not feel that you have to go it alone. Good luck!

jajaja profile image
jajaja

Yes, I had a kidney transplant a year ago. And pulmonary emboli about 8 months ago. They never seem bothered about finding the cause (I have had them/been suspected to have had them a couple of times before) -- I guess it wouldn't affect our treatment, which is of course warfarin/coumadin. (My hospital refuses to consider any of the newer drugs, because of the lack of experience in using them for transplant patients.)

While we take it, they reckon we are protected against further clots. The hospital's specialist renal pharmacist said she had never known anyone who was taking the warfarin and was in range who got further clots. I now realise I should have asked her how she knew so much about it -- it turns out that pulmonary emboli are a known side effect of kidney transplants. (Mutter, mutter, with my history why wasn't I better protected?) My readings do wander about a bit, and as I am now on warfarin for life we invested £490 in buying our own machine. Which makes life a lot easier -- and safer, as I do go out of limits easily. Our surgery supplies the expensive test strips for me.

I managed to get off the steroids a few weeks ago. The first attempt led to a bad reaction and they had to restart it, but weaning off it slowly worked. The doctors now tell me how good it is to be off them!

My clots occurred a few weeks after I was changed from Tacrolimus to Cyclosporin, (I thought the breathlessness was just a side effect of the new drug). They didn't apparently consider changing me back. I have been on CellCept for a bit longer than that, without obvious problems.

I wish i was better at managing my doctors. I don't think I have any useful advice. It took months from their first saying I should be able to come off the steroids to them actually agreeing to it happening now. Part of that was their reluctance to change too many things at once, so everything else took priority until I refused one change, saying I would rather get off the steroids first.

sdahnke profile image
sdahnke in reply to jajaja

If you don't mind me asking, i was wondering what is your immunosuppressive regimen? The main goal for me this year was to get off the prednisone and right now it is not looking so good. I have most all of the horrible side effects from the steroids and need to get off of them sooner rather than later and just hearing that you were able to get off of them gives me a little hope. I was on tacro and everolimus with the hopes of getting off the steroid. Due to my clots, as a precaution i was taken off the everolimus and put back on the cellcept and with that change the getting off prednisone went out the window. i am trying to build a case for myself with my doctor to still take me off. Anything you did to get off of them could help me. Thanks so much for responding.

jajaja profile image
jajaja in reply to sdahnke

I got a "perfect match" kidney from a family member. I started on tac and azathioprine with the prednisolone (same sort of thing as prednisone). I was changed to cellcept because of the diarrhea and vomiting, while you were apparently changed from it for similar reasons!

They have kept saying "Oh, you are such a good match, you don't need all this stuff" -- while usually not lowering it! I was switched from tac to cyclosporin in the hopes it would improve my brain fog, and the doctor said "I will start you on the top level..." and that one has actually gone down a bit!

I had hoped to lose the steroid quickly, because it apparently becomes less easy or likely as time goes on. But it took longer than I hoped. It did get stepped down gradually though, when nothing else was changing. I was eventually on 10mg for a little while, and they then dropped it to 5 with a view to stopping it. That was the stop that turned out badly, so they restarted me at 10. Then a couple of months later said I could stop it again -- stop dead or taper it, whichever I chose. So I tapered it off over a couple of weeks, even though they say tapering doesn't matter at such a comparatively low dose. If I had been taking it longer I would have chosen a longer taper. I know many people are on a bigger dose and need to be eased off gently.

I don't know what I did, particularly. I suppose I did gently complain when they said I needed less but didn't change anything. As I said, they were finally going to drop the cyclosporin levels again but I said I would rather lose the steroid. A GP had pointed out that it was probably part of the reason why I was unsteady on my feet and had trouble walking *down* stairs -- a typical steroid thing. As I am old enough to really fear breaking a thigh, and the consequent loss of mobility and independence, I said I would rather lose the steroid and they went along with it. Since then, I have been seeing another neph in the same department who said how good it is that I am off steroids, as well as my GP! So why did it take so long, and kept being put on the back burner?

sdahnke profile image
sdahnke

I have also received my kidney from a family member, my dad. The thing that gets me is that if I would have had the transplant a few years later than I did I wouldn't have had to be on the prednisone at all. (due to new protocol at the hospital). I have been complaining about the prednisone since I started taking it. It basically just makes me feel like garbage as far as the mood swings and the weight gain and also the anxiety that comes with it. I was finally on the right track and finally going to get off of it soon as of my last appointment with my nephrologist until the whole clot situation happened. now I am back to square one. I feel like I am very over medicated right now and my main goal is to get off of most of the medications. I am one of those people that gets most of the side effects of every medication that I take and that is the crappy part. I know I will have to be on some forever but the others that are basically helping with the side effects that I am having from my prednisone I would like to get off of.

Thanks for your info and your help. It is much appreciated.

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