Transplant Optimisation Trial - the fall out

Hi - just thought I'd share this, I wrote it to explain to a relative what was happening. I know it is more about my transplant than the Lupus, but someone might have some thoughts so I thought it might be worth sharing.... Tx

I guess it started a few weeks back; my relationship was on the rocks, my horse needed to find a new home and at work I was busier than ever but feeling further from my goals of promotion.

To put it another way, I was under pressure.

I had my transplanted kidney (Kevin) in 2004 and with the Lupus and Sticky Blood Syndrome, it could have been a more tricky prospect to keep alive, but it had all be "relatively easy" (leaving aside the bouts of shingles, German measles and viral meningitis!). I am literally one in a million: one in every white women get Lupus and one in every thousand Lupus patients need a renal transplant!

There is a new trial out, testing for a specific antibody, if you have this antibody you are 50% more likely to reject your transplant. However, as I have been told, this antibody is actually a response to the B-cells and cell receptors connecting somewhere within the immune system.

I have been negative for this antibody as long as they have been testing it.

To measure the health of the kidneys creatinine is measured, this is essentially looking at the levels of proteins in the blood, the more effective the kidneys, the lower the creatinine. A score of 100 or below is about normal, 120 is the point that recognises renal failure, 188 is where I was when I was first diagnosed back in 1999, and 1,000 is not unreasonable if you are on dialysis.

As a transplanted kidney gets older, the very drugs that are keeping it alive start to be detrimental to its function. Traditionally, the treatment is reduced slightly to preserve it. This trial is looking at the benefits of doing the opposite, keeping the drug level higher to prevent the T-antibody from becoming active and keeping the chances of rejecting lower.

In this trial I am in the group who gets to know their results. At the beginning of the trial 8 months ago, I was negative. Now, during that time, I had been under stress but I got some great news, my tacrolimus levels were regular so it was deemed safe to reduce that immuno suppression for the good of Kevin. My creatinine levels had been resting at 140 and by reducing the tacrolimus by 0.5mg a day it was reduced to 122. The first time by creatinine levels had reduced in 10 years.

One of the difficult things as a "lifer" (life-long illness) is that you have to tread the line between monitoring health and not becoming a hypochondriac. So perhaps, a lull in energy, loss of short-term memory and difficulty concentrate should have sounded alarm bells - they are my key signs for the Lupus/Sticky blood being active. This is the issue with not turning green, or doing something specific, those symptoms cover everything - and nothing. So I assumed I was just stressed about normal life stuff and ignored it.

I shouldn't have had; I am convinced I was having a flare up in my immune system.

Now, the doctors can't tell me what trigger the Antibody-T but I know my body and I guess that on the previous levels of tacrolimus, we were delicately balanced and reducing it tipped my over the edge. Due to the stress factor, there are no guarantees that it wouldn't have happened anyway, but it makes total sense to me that I should have a flare up just after reducing my medication.

I won't lie, I've been having a hideous time. And sometimes it's worse because no one else can see it. I look fine, I still rock up to work but everything is difficult. Everything.

So, here's the twist:

Because it's a trial, how do you solve a problem like the T-antibody? It would make sense to you and me just to re-adjust the medication to where it was previously. However, from now on, if the T-antibody becomes negative, it makes no difference, because the doctors know that the B cells and the cell responders are connecting and that's the bit that will do the damage to the transplant. And they have no way of measuring that connection happening, and very few drugs that target the B-cells.

So when the doctors recommended that I upped both my immuno suppressant drugs and took steroids (a boost then steady dose for life) my heart sank. Steroids are powerful drugs that can affect people dramatically. Typically they increase my appetite dramatically, make my brain fuzzy, to the point where I get upset that strangers will eat in front of me without offering me some! I get "moon face" and it reduces bone density - not very clever when you ride horses.

But the kicker is that there is no proof that this treatment works!!

The doctor was very supportive and we talked through many options. It felt very odd not to take the doctors recommendation. So I opted to raise both immuno suppressants and take the short- high dose of steroids (8 weeks).

So, how will we know if it works. We don't.

We will continue to monitor the creatinine levels, but as there are no so many drugs in my system, this will be worse. I will always feel a tiny bit worse, everyday. I have no idea how you feel everyday, and I guess that's a good thing, but the prospect of feeling any worse and not knowing whether it is doing any good whatsoever is a hard one to justify in your head.

The only marker for success if me not rejecting Kevin. Transplanted kidneys last an average of 15 years, this year he will be 10 and I don't want to imagine life without him. It's exhausting and needs thought everyday. I take pills twice a day and inject blood thinners every morning - you don't even get Christmas Day off!!

There is no one to blame, no one at fault, it's just one of those unlucky things, and I am so lucky to have such a great team and family around me, but it's hard.

21 Replies

oldestnewest
  • Hi Tasch - how did your relative respond to this? Did you feel the need to write it to them because of demands or because they asked? I often feel humbled when I come on these HU communities with my rather quirky brand of Rheumatoid Disease (RD/RA) and read just how much some people have to go through with their autoimmune disease - your post is no exception. I went to a talk by a Cypriut woman recently who has had RA since she was ten. She is very disabled and has also had a kidney transplant but she still travels the world and this is what she was talking about.

    My problem is that I'm very drug intolerant - my body rejects most of the prescription drugs I've been put on over the years so this is my main problem. If I could tolerate higher doses of immune suppressants and steroids I think I probably would have just got my life back to a great extent but I have ended up having to be very focussed on self-management, food, supplements, rest and exercise. A friend who's 19 year old daughter suffers from various autoimmune diseases recently lent me a book called "Autoimmune, the Cause and the Cure" by Annesse Brockley and Kristen Urdiales - the journey of a woman with Lupus. I thought it might be a bit of a self-help type of book but it's not - it's actually quite hard core science so far and I'm struggling never having done much science at school!

    I agree there is no one to blame but I do sometimes think that society could do a lot more to support people with autoimmune diseases in the same way as it does for those with cancer. I so hope Kevin has great longevity and that your relative is very proud of you for the way you manage your complex health problems. Twitchy

  • Thanks for your support and sorry to hear about your issues with drugs, I think i am very lucky in that I seem to accept most treatment, but it's just hard work staying alive and positive sometimes...

    but I do find it very odd trying to justify taking a day off work when no one can see anything wrong. I think that really needs to change, I suspect that will all be about awareness, so that's why I thought i'd share this story....

    anyhoo, thanks again for coming back to me - please don't ever feel humbled though, we all have our issues and we make the choice of how to deal with it. I often think that my particular brand of coping is a mix of optimisim, stubbornness and stupidity...

    take care

    Tx xxxx

  • You are right Tasch - luck is all relative of course. You feel lucky for being okay with the drugs - I feel lucky for not being disabled or too much in pain most of the time. But neither of us are really very lucky at all in real terms. The thing I count as lucky sometimes is that I'm good at turning bad things around. I'm an artist and so I can draw on my experiences and that does seem a pretty effective way of coping. I do think it is brilliant that you have written your story down and explained how it feels - to me that is making lemonade out of lemons. Twitchy xx

  • we've got to keep our chins up haven't we? I sometimes feel quite smug that (as a result of the Lupus and everything else) I really understand how it feels when you're "fine" and how great that actually is! I can feel sorry for those who have never struggled with their helath or the health of someone they love, they don't know how lucky they are!!

    Keep up the positive thooughts and thanks so much for your comments.

    Tx

  • Hi Tasch

    What an incredible story you have shared!. I thought I had a lot of juggling to do between risks and benefits of drug treatments and the illness but it's nothing compared to you!. I do hope the balance of more immuno-suppression and extra steroids all help to preserve Kevin for you. I admire you for being at work and your very positive attitude in spite of all the difficulties. Best of luckX

  • Thanks you so much for your comments - I'm not sure you should admire me! I am just very very stubborn! The balancing act is always an issue, and the problem is we can never step outside our bodies to see how it feels to be 'normal'! Good luck with your juggling. Tx

  • Hello there - I don't have any advice I'm afraid, but I do have admiration for you!! It humbles me to read how some people perceive.

    It is a hard to balance cope with lifelong illness, as well general stresses and manage an active or fulfilling life. My ex husband thought I had become a hypochondriac as I looked ok - apart from 3 stone weight gain from steroids!

    Anyway, I wish you all the very best health and hope that you find the right medical path to take for you. Xx

  • I'm so sorry for you, I am so lucky to have a supportive family, and while they do not understand sometimes, they do their best for me. I cannot begin to imagine how difficult it must be without that support, you must be remarkably strong. Thank you for your comments. Take care Tx

  • Good for you for sharing your story. Having lupus is hard even some people think you are fine because you look alright. At the moment I am waiting for a biopsy on my transplanted kidney as i am leaking protein. I have only had my transplant four years ago. Not looking forward to being on a dialysis machine if i have to be. I have no support but i manage as best that I can. I am on a high dose of tacrolimus as my Transplant nurse said on thursday when I went to see her that black people always have a high does of transplant drugs as it works better on them which i think is unfair. I asked for a reduction in medication but she said no as the dose that I am having is "right for me". Whatever that means. i am trying to find a job but my 15 years being ill puts off employers. Having lupus is tiring and sometimes I get down but I am still her. Thanks for your story. x

  • Gosh, you must be so anxious waiting for the biopsy - I am not patient at all, waiting is the worst part for me, I just want to know what's going on and deal with it. Depending on your creatinine levels, you are hopefully still a good long way from dialysis - I hope that you haven't had dialysis before, but I have done both peritonneal- and haeomo- dialysis so if you want to ask anything then please do... Keep asking consultants about the medication if you feel it's not right for you - we have to shout when it feels like there is something amiss. I totally understand the feeling down and tiredness, but I also believe that being a lifer makes us that much stronger. Hang on in there and a job will find you! I hope that this site is giving you some support, no one should go through all this on their own. Take care and keep your chin up. "it'll all be okay in the end. If it's not okay, it's not the end" (Unkown quote). Tx

  • Thanks for your reply. I have been on dialysis before, peritonneal and also haemo which wasn't pleasant, but had to be done. I have been on this site for a long time and it has been a great help to me especially when I have been down, it has made me stronger on more than one occasion. I see my Transplant nurse every three months, do you still attend the hospital as a outpatient or don't you have renal check ups anymore? I think that my creatine levels are ok, it's just the protein leakage. x

  • I've had my transplant for almost 10 years now, my creatinine levels are great, I've had no episodes of rejection and yet I am still in the transplant clinic every four months! The lupus and APS (Hughes) makes it that much complicated. Although I want to reduce the frequency I also find that I get nervous the longer I stay away from the clinics! I'm sure like me, you also have a plethora of other clinics to attend. That's the hardest part of all this for me, feeling like a prisoner in my own body, we have to be at this clinic and have that scan and there is nothing we can do - I can't say no and I have to explain to my work (who are great) but it's just so frustrating... I hope your transplant recovers without too much intervention, but shout if there is anything you want to talk through ./ offload... Take care Tx

    I had posted my story on the Hughes Syndrome page on healthunlocked. Perhaps I will do it on the Lupus too. I always worry that I will just bore people! Tx

  • Thanks Tasch. I am still waiting to hear about my biopsy for my kidney, I hope there won't be any intervention either, as they are painful to have. I don't have any other clinics to go to other than transplant clinic. I don't take any medication for lupus. Thanks for your comments.xx

  • Tasch.....I am so sorry for your illness. Scary as I have above average creatanine levels and scarred kidneys. I was told it was caused by constant UTIs . Not sure. I also believe I have sticky blood (not tested yet as I am new to all of this). I take an enzymedica natto k enzyme for sticky blood . Maybe your doctors can look into that and help u reduce one of your medicines at least. I also take bromelain when I feel inflamed or just eat pineapple. I had trouble with my breathing last night and this morning. Check with doctor with both of these. Have you tried nutrition? Changing certain things u eat? I have a list of foods that r not good for kidney disease, but don't know if a transplant is the same. Take care and hope things are better for you soon...

  • Thanks for you comments. I will ask the consultant about the medications you have mentioned. Have you considered joining the Hughes Syndrome page on Health Unlocked - as that is basically sticky blood by any other name, they may be able to offer you some alternatives or tother things to try. They are a great, supportive group. Tx

  • Tasch...not sure I have it other than my two brothers have sticky blood and are on blood thinners. Seeing a rheumy in July to find out if I do have it. This is all preventative for now because of the scary incident I had with the migraines and eye problem. Will look into if I get diagnosed with Hughes. Thanks

  • Good luck. I had eye issues and migraines too by the way. just shout if you want to chat. Tx

  • Tasch...k..thnks

  • Thanks so much for your post and starting this great discussion tasch....you + our fellow forum members have said it all so eloquently above, that I feel wordless...this is a subject I've been wondering about for some time now. Yours is the first thread I've found addressing this in such depth since I joined this forum in its early days.....am wishing you all the vvvv best & hoping you let us know how you get on

    XO

  • Thanks so much for you lovely words. I have an appt with my Lupus and APS consultant tomorrow at Guiy's. She's really terrific so I'll let you know how I get on...

    I have turned a bit of a corner over the weekend. I decided that I couldn't really feel sorry for myself and I just have to accept this is the new normal and get back to attacking life (rather than have it attack me!).

    Glad you found my little story helpful.

    Tx

  • Sounds good!

    Go girl go!

    XO

You may also like...