After 12 years with PV and then 2 years with MF I explained in a letter to my consultant that were the decision to have a transplant entirely mine it is what I would wish for. I'd been on Jakavi for a year and it had ceased to help. I then went onto the Pacritinib trial which curtailed night sweats but nothing else improved. Overall I felt I was becoming gradually less well, with both quality of life and life expectancy decreasing. Fully transfusion dependent with thrice weekly treatment in hospital I was becoming increasingly despondent and was now a high risk MF patient. In May this year I was told that there was, perhaps, a window now open for the transplant although I was deemed at the higher end of risk (poor lung function result and GI varices) and my consultant wanted a further opinion from Prof Harrison. It was a short while later that I explained that I wanted to proceed despite the risks. My consultant phoned me as soon as he'd read my letter and agreed to the transplant. I was duly admitted to the QEUH Birmingham on 06/06/19, the anniversary of D-Day! On the 14/06/2019 at just after 8pm I received the stem cells. A quiet moment after the weeks pre-conditioning and all that I'd been though. It is in some ways an anticlimax but I cried and found it a deeply moving experience. I hope someday I may be well enough to thank the amazing German donor.
My recovery in hospital went pretty well and I was discharged after less than 4 weeks. My spleen started reducing almost immediately which was a great relief and the neutrophils reappeared 'on time'. Unfortunately the weekend after my return home I had a GI bleed. Knowing that this could happen due to my having gastric varices was one of the consultants main concerns. Bit of a blow and an unpleasant experience : I'd had 2 previous bleeds and they're frightening. Knowing my platelets are very low vomiting blood is not relaxing! I had an emergency endoscopy at my local hospital and was discharged after 4 days. A week later I had yet another GI bleed and, after another emergency endoscopy, was transferred from my local hospital back to the QE. I saw loads of Doctors - hepatologists, haematologists, gastro etc and everything from a splenectomy to a TIPS procedure was discussed. I eventually had an ultrasound endoscopy (my 15th endoscopy in all) and after 11 days in hospital was discharged.
From that point my recovery has gone pretty well and I am now day 107 post transplant. My spleen has gone from 19cm below costal margin to about 3 cm below which is great as I had come to hate my splenomegaly. I have put on a stone in weight since my last discharge. Whilst my Hgb and platelets remain low (mid 90's and 30 ish respectively) I have not had a transfusion for 5 weeks and the cyclosporin and acyclovir are being tapered down. As of last week my follow up clinic is once every 2 weeks instead if weekly. I had the results of a BMA last week and chimerism is 97% donor. My marrow is somewhat empty but I was told that was to be expected and my consultant seems very happy with my overall progress. The 16th endoscopy a few weeks ago was also positive and I'm not due back for a follow until the end of November.
I was made well aware of the risks of having a transplant ( for me assessed as high as a 30% chance it would be unsuccessful) and was told in no uncertain terms about the gruelling process I would have to go through. All the medical staff were fantastic and I count my lucky stars for their care and professionalism. I know I am not out of the woods, but so far so good and I have no regrets asking for the transplant to go ahead. Life is slowly returning to something akin to a previous old life although it will never be quite the same, after all I am now partially German, and in my late 50s! I still can't work and get tired and take a handful of pills everyday but I do feel better, and have hope, and that's good.
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Dodders
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Thank you for sharing that! To be 50%German is not at all a bad thing ;-)). Wish you now can continue to get back, as much as can be done, to you old life. Keep on going!!!!!
That’s such an amazing and uplifting post. This will give hope to so many in a similar situation.
It sounds that despite your ‘high risk’ MF status you have coped pretty well with the procedure, apart from the GI bleeds. I hope your journey continues in this positive direction.
My local haematologist said that enrolling onto donor programmes is seen as a completely normal 'why wouldn't you' thing to do in Germany. Also I suppose that many of the ancestors of British people, and their descendants, were from Northern Europe?
Good luck! Thank you so much for posting this. It is very inspiring to read that you kept pushing for the transplant and got it. Please keep us updated and remain hopeful -
How inspiring! Thank you so much for posting your story. It is very inspiring to read that you are so mentally and physically strong! How about the chemo treatment before the transplant?? How did you cope with?
Thank you for your kind words. The pre-conditioning chemo was ok (busulphan and fludarabine) but the ACT which was given during the latter part of the week was quite unpleasant; shivers, fever, vomiting and diarrhea. It was only for a few days and plain old paracetamol was fairly effective.
What stands out, for me, is that the risks were explained , and the choice was left to you. Thank you for telling us about it. I wish you all the best.
What a great result! I am so happy for you, as I truly understand the process and what one must be subjected to both physically & mentally (include emotions in their too)
Not having been through though, and I realise what a tough decision it would be for me to have to make etc...
You are obviously a very brave soul and one who is determined to succeed...
Thank you so much also for sharing your journey with all of us here, and please do keep as informed as to your on-going progress. I am so ecstatically happy for you Dodders...
Well done for making such a positive decision and welcome to the transplantee club. I had mine 8.5 years ago. No German in me but 50% woman! Good luck for the future.
I was so inspired to read this. You explained the whole process so clearly it gives us all hope that should we ever need it we know how it could work. Your matter of fact account and explanation shows a very thoughtful cal. person and I guess this is an important part of embarking on it and getting through it successfully. I am so impressed and so pleased for you.
Thanks for all the lovely comments and if anyone ever has any questions or thinks I might be able to help in some way do please get in touch. All the best, Tim
Thanks so much for your inspirational story. My new hematologist wants me to have a consultation with a BMT team because she thinks that I’ll need one in 2-5 years. I was diagnosed with ET 11 years ago but my red blood cell counts have been dropping for a year and she diagnosed me with pre-fibrotic MF. Your story gives me new courage to fight this disease with everything you can.
Thank you for sharing, continued good luck, never give up to anything, and please keep us informed of your progress. We will all most likely progress and have to make a decision similar to you. Best to you.
Hi Babbitty, yes he's a lovely person and seems really genuinely pleased, almost excited, with my progress overall. After he'd phoned me to agree to transplant I sensed that my letter asking for the transplant to go ahead was very important to him. It meant that the decision was not his alone, he had my definitive agreement to proceed. I also believe he was hoping I'd make that decision.
Hi Dodders. Your post couldn't have come at better time. My husband has high risk primary myelofibrosis. He is waiting on the call to say that his donor has gone through all the necessary tests and that it's time for him to go in for his transplant. We are expecting that call any day now. We have searched for any posts on people who have already been through the treatment, to give us some positives to cling to. Your post has done just that very thing.
I thank you and wish you well on your journey to good health.
Anne
Dodders, thanks so much for sharing all aspects of your experience - I sincerely hope the best for you. You certainly made the right choice. I was diagnosed post PV and ET myelofibrosis 4 years ago and have been on Jakafi since. Hydroxy caused leg ulcers before that so I feel my options are coming to an end soon. I so appreciate your post.
GI is gastro intestinal. Varices can rupture, and when they do blood loss can be very severe even fatal. It is potentially more dangerous for patients with low platelet count especially a count below 10 as the clotting system is impaired.
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