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Transplant Recovery

Hi everyone

Hope you are all well. My husband Alastair had a BMT on 23rd May this year after his CML developed into myelofibrosis and myelodysplasia. He's just passed his 100 day post transplant and he is doing well haemotology wise. How many transplant patients or family memers are on the forum?

Alastair is back in the hospital now, not because of his bloods as they are fine, it's the effect of his steoids on his mental health. They had to give him medication 6 weeks ago as he was in a very hyper state and anxious. He's now the opposite as he appears sedated. The hospital are changing doses and monitoring how he is progressing. I think and he agreed that he is just so fed up with hospitals, doctors and generally being unable to fully function. We have 2 children age 1 & 3 and he is unable to do much with them.

What I really want to know is what should we expect at this stage. It's only 3+ mths and maybe we both had blinkers on but Alastair thought he would be feeling better and should be able to do more. I know it's a long recovery period but would just like to hear from others with experience.

Thanks you in advance,

Moira

Hi Moira doing well haemotology wise at post transplant 100 is great news, bone marrow transplant's effect people in different ways and its early days, yes its a long recovery period.There are no set rules on how well you should feel and what you should be able to do.

And its quite normal to have anxious periods and worry about your family and think you should be able to do more.I am post transplant 400 and I am fed up with hospitals,doctors and needles.I have had a very rocky path post transplant latest is heart faliure but CML free and I am still heresmiley

Hello Moira, there are a few members on here who have had SCT's... Michael being on and me being another.

100 days post transplant is the first milestone. Congratualtion to Alastair for reaching that.

To expect a full recovery by 3 months with a return to normal engergy levels is a little optimistic. Transplantation is a longish road (just think what is going on in the marrow! and what you are asking the body to recover from) and one needs to expect bumps along the way and be well prepared.

Personally, I did not even begin to feel anywhere near normal fitness levels until 6 months post transplant (I had a non meyloblative ('mini') SCT from a sibling donor).

Please read the transplant diaries- blogs on this site. They a varied indeed, but most are uplifting and might grasp the time-lines a little better. 

It took me a good 12 months to feel OK... then more that another 2 years to be told I was 'cured' - always a hard word to say because there is never a guarantee that you are or will remain so.

I hope Michael's and my own answers help you in some respect- if only to keep positive and accept that this is quite a long journey.

Best wishes to you both,

Sandy

Thank you very much for your responses. I will tell Alastair everthing you told me, I and Alastair both knew that he was in for a long road to recovery but it's always good to hear from others who have been through it. A few weeks ago the steroids were  having the opposite effect in that he was very hyper, chatty and anxious and now we are at the extreme opposite. The hospital are fantastic and in a few weeks things will improve.

Regards to you both,

Moira

Hi Moira

 

I am almost 4 years post transplant. My story is on the diary page. It is such a hard question to answer and it is something that is so individual for everybody. I had a very easy transplant but have had a few issues since. Nothing major but aggravating and life-interrupting in many ways. I was lucky in that my children were so much older and very much self sufficent when I had my transplant.

I was on very high doses of steroids but not until over 6 months after the tx. I am surprised my husband didn't throw me out the house! I was horrible and I was also up at 4 in the morning eating and baking cookies!! I wasn't depressed just irritable and fed up. I didn't get high either though. 3 years later I am still on a low dose of steroids and overweight.

I was back at my part-time job just over 7 months post tx and I think my energy levels were pretty good by then. It must be very hard for you both with such young children and I am sure it must be so hard for your husband to sit on the sidelines. Tell him not to panic, he will soon be feeling better and he must listen to his body.

Please email me if you have any further questions. This rocky post tx path is not clearly explained to patients before the tx!

Wishing you both all the best

Susan