New to site, Transplant Disappointment & Worries

[sveness]

Hi I am new to the forum and thought i'd tell my story and some worries I am now having, it started off pretty well but unfortunately seems to have gone down hill somewhat.

Diagnosed with very Severe Aplastic Anaemia 2003 (age23), treated under Professor Marsh in London with ATG, Remission for about 5 years then developed to some MDS. Gradually I became transplant (Red and platelets) dependent again and even though I was living a normal life, working full time etc... it was difficult and something needed to be done.

I was admitted to Kings College Hospital on November 5th 2011 for my Unrelated Bone Marrow Transplant and had Chemo of Busulfan, Campath and Fludarabine. I felt like I was a fraud for the first few weeks almost as I had hardly any reaction and felt totally fine really. Had my donor cells (from a 10/10 match, 25yr old German Male) on 15th November. I was initially in hospital this first time (there have been many times now!) for 5 weeks (Derek Mitchell Unit, Kings) and I can say it wasn't too bad. I did have to go on oxygen as I got a bad lung infection, had many temperatures and developed skin GvHD etc but I felt it could have been a lot worse.

Discharged 8th December, the signs were good, my platelets were great and had come up nicely to around 80 (i'd been living pre transplant with them at around 20 and needing transfusions twice a week). The initial bone marrow biopsy looked good and the graft was deemed to be working.

Unfortunately within 3 days I was back in hospital (my local one this time, I live in Northampton 80 miles from London) with a temperature, the lung infection had worsened considerably, severe GvHD with full body rash, I had severe diarrhea and vomiting and failing kidneys. I was then ambulanced back down to Kings where I was put on high dose steroids for the GvHD. I was here for another 3.5wks over Xmas and New Year and discharged 3rd January 2012. I felt so much better this time I was discharged...How I should have felt I think when I was discharged the first time, but the first time I thought I was meant to feel awful, I'd just had a transplant after all!

This is where my main issues begin! I was going to my local hospital for blood tests who, although are fantastic, they are not equipped to look after newly transplanted patients and Kings did it seems not liaise with them properly regarding my after care, specifically the close monitoring of two tests CMV and Cyclosporin level. The worst thing also was that I was not given a post-transplant clinic appointment for Kings (they normally see patients every 2 weeks) and ended up having to make my own when i'd heard nothing over a week later. Northampton General (local) work with the Leicester Transplant unit so being very stressed and out of their depth got me to see their consultant who visited twice a month. She admitted me to Leicester straight away to sort out my GvHD which was worsening again. So back in hospital this came under control well but then I got the news that my CMV virus (lots of the population carry this and it must be closely monitored post transplant) has reactivated badly so I needed IV Ganciclovir. This drug is renowned for causing bloods to drop also!

The lack of post transplant care and monitoring from Kings meant that this virus re-merged unchecked in my system and now I am waiting to see whether it along with the treatment for it has now caused my once successful graft to fail. Unfortunately I have had to make an official complaint about this. I have glossed over it all here really as too much detail to write but it was a most distressing and stressful time not knowing who was caring for me and when tests were coming back etc...

I've been readmitted to Kings. Dr Hunter in Leicester called Professor Marsh and said action needed taking and she arranged for me to be readmitted to Kings, where I still am and have been since 15th February 2012. All in all i've been in hospital just over 3 months with the odd week out here and there.

My second bone marrow biospy showed I had 97% donor cells, my bloods were holding up nicely and I was only HB transfusion dependent. After this set back and the virus treatment my latest biopsy on day +100 showed a very compromised marrow with only a few very immature cells. I am showing 100% donor but that doesn't seem to matter to my blood results. I had no white cells or neutrophils. Platelets are worse than ever and need platelets every other day and HB every 7 days. I am on a reducing dose of steroids, down to 20mg a day now as have been on them since December. My face is like a mutants from them, huge, swollen and round.

The idea was to 'watch and wait' to see if my marrow could recover from the knock it had. If not they would give me a top up of more donor cells. It looked fairly promising over the past week as my white cells and neutrophils have risen daily to over 2! but platelets and red not doing anything. When whites reached over 2 they stopped GCSF injections and they promptly started dropping again so back on that now.

The GvHD on my skin is pretty much gone, under control but the last 2 days my liver enzymes GGT has rocketed to over 600 (should be no more than 55) and AST to 195 so they need to see if maybe Gvhd is there.

I just feel to up and down. I feel angry that this could have been prevented or not as serious as it is if i'd been followed up properly. I am glad to be back here with Prof Marsh, she is the ward consultant this month which is great. I have lived with this illness for 9 years and knew about transplants, i've got a huge amount of knowledge about the illness and treatment etc... but I still think it is dawning on me how this will probably affect my life forever. there are so many complications. If it works it may not work properly, i may be left with other issues such as liver problems etc... I don't care if i never have normal bloods again, i just want them to be high enough and stable so I can live life. I was told i'd need 4-6 months off work but even if they sort this mess out i'm looking at at least 9-12 months now, will I have a job to go back to.

I am fully aware of the complications but it is so disheartening sometimes when every day the blood test can be different!

Anyway I wanted to share my story and would gratefully receive any feedback you want to give or comments.
Thanks, Sally.

[Neil Cuadra]

Hi and welcome, Sally.

You've been on this journey a long time, most of your adult life in fact. I get the feeling that you are on the verge of recovery from this CMV setback, with a new immune system from a successful transplant but with blood cells that just can't survive long enough. I hope that with the right combination of transfusions and GCSF, as they monitor your liver, you'll be able to maintain counts artificially long enough to let them rise on their own and get you past this last bump.

It's a shame that you didn't get better followup care but you are now back in great hands. We hear nothing but praise for Professor Marsh. You've already fought back from a lung infection and graft-versus-host disease so you've already proven that you're a survivor. Consider us to be on your team too. Good luck.

[evansmom]

Hi Sally,

So sorry to hear of all your hardships which I'm sure would have been less had your transplant team not dropped the ball on you.

I think Neil is right, you still are 100% donor so I am hopeful as well that once your CMV number settled down to near zero, you will see your counts recover. My son had high liver enzymes throughout transplant and for almost two years beyond (ast/alt ranging anywhere from 90's to 200's, NEVER in normal range) and the docs were initially worried about liver GVH, but I never believed it was that as he never had a trace of even minor GVH of his skin, nevermind something more serious.

Turns out, and my research confirmed this for me, that any time one's viral load is high, it is common to see a mild to moderate rise in liver enzymes. I now believe Evan was struggling with a high viral load which climaxed with a terrible flu followed immediately by a bad case of shingles at 17 months post BMT. He went on oral acyclovir for 5 days and, to the best of my memory, his liver enzymes were never outside the normal range again.

Hang in there, things wil turn around. Be sure to continue being a good advocate for yourself, speak up and ask questions when things don't seem right. Make sure, with the meds you're on, that they continue to monitor your kidney function.

Best wishes,