I’m primary MF and Cal-r positive. I’ve been on Epo injections for 30 weeks which has kept my red cells in the high 90s. My platelets are in the low 40s. I have started to take Ruxolitinib but because of my low platelets 5mg 2 times a day. This will hopefully reduce my spleen. I have been told because of my symptoms I have moved into the higher risk category.
I’m on my journey to have a stem cell transplant.
In the past few weeks I have gone through the Prehab process, ie poked prodded, X-rayed, scanned and blowing into machine. lol. Also a tooth needs to come out as a precaution. August 1st is when I meet the transplant team to see if I’m fit enough to go through the procedure and to see if the donors are still compatible.
Scary times not just for me but also for my wife who has been my rock without her I think I would be lost.
It has been great that people who have gone through the process have shared their experiences warts and all. It has give me comfort and hope. Will report back after my meeting with the transplant team.
Wayne
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Grizly
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As you perhaps know I am one of those who has been through the process recently, last September. I remember all the scans and blowing into strange machines too! It sounds as if you are well on the way.
You mention that your wife has been a rock, which is wonderful because a supportive partner makes all the difference. I'm afraid she will need to continue to being a rock but going through it together keeps you both strong.
Please continue to ask about anything you want to and keep us all updated. Best wishes, Jennie
I wish you success in all the pre diagnostic testing. Fingers crossed you get the go ahead and everything falls into place smoothly for you.
There have been so many people on the forum in the last few years who have had successful transplants. It’s good that you have found comfort in them sharing their experience.
Hi. I too went through the SCT process in June last year. I went through all the prodding and scanning etc only to have my transplant delayed by 6 months due to COVID and then had to go through all of the testing again. It was worth it though. Hopefully you will only have to go through it once and then they get cracking!!
Keep us updated on your progress and as Jennie mentioned above if you need any support or need to have a moan, we are all here. Good luck
As you may be aware from my posts, I had a sct 6 months ago. Wishing you a trouble free process and many thoughts for your wife. It was a hard job for my husband
Hope all goes well for you. I’ll be interested to know how you fare as I have recently been diagnosed with post ET MF so there is a possibility I might have to go down the same route.
Wishing you and your wife well on this journey. We sometimes forget just how deeply this affects our partners. As SCT candidate myself, I do take comfort and learn from those that have gone before me. So if you are up to it, please keep sharing. Take care. Penny
Hi Wayne, thank you for sharing this. I will include you and your wife in my daily meditation when I send out Love, Light, virtual hugs and healing to anyone who is tuned in to receive it.Watch out for healing.vibrations around 9 am or 9 pm BST most days.
I am at the very beginning of the process. I found a transplant doctor I like in Boston My first appointment was in June and they already found a 10/10 donor. I thought I had more time because my numbers weren’t that bad but I just found out I have an enlarged spleen, which was completely normal 6 months ago. This summer my numbers were worse than they’ve ever been. I’m high/intermediate risk. I go back to see him next month to see where I stand.
I wish you all the best. It’s definitely a scary process but as you can see on the site, many people have had a successful transplant. And having a supportive spouse or partner is very important. I’ll be following your journey.
Good luck iam also on the sct path my mesothelioma 31st of July this Monday so I guess we will be kind of doing this together where are you having your tree if you don’t mind me asking x
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