Sos> Headed For Transplant
 

My son will be heading for BMT late June to early July for SAA/PNH that has evolved to MDS. I'm overwhelmed and terrified. Any advice appreciated.

Relentless,

I am both sorry to hear about your son's progression and excited that he will have the chance to be cured of his disease. I stood in a watch and wait mode for MDS for almost 5 years before proceeding to transplant. Transplant is a difficult process and takes time and as you know carries many risks, but in many cases the alternative is not very good either.

There are a lot of good transplant stories here on the forums and a lot of advice better than what I can provide, but my experience has been very much filled with ups and downs, so being prepared to have good days and months and bad days and months is the first piece of advice I can give. Don't get distracted by the day to day, focus on the long term - while enjoying the good days along the way.

Build a team of doctors that you trust, that give you the right amount of information to make you and your son comfortable, that you trust should difficult times arise before, during or after the transplant process.

Meet the infectious disease specialist for the team - I have needed this person three times in the last year and a half, and they have been incredibly good to me and for me. When something goes wrong, they are the ones responsible for bailing you out of those opportunistic infections and the better they are at doing so, the quicker you are recovering.

Be your advocate at all times - doctors and nurses are really good and care alot, but they don't care about your life or your son's life as much as you do, always ask the question regardless of whether you think that it is worthy of being asked, even the simple one of - why is this medication being administered again? or why not?

Have your son dress comfortably, have games available, movies available, computer, etc. boredom reigns supreme after the first 5 days. Also, make sure that he gets up and walks, stretches, talks moves, eats, - even if it is only ice cream or PBJs. Use the pain killers - especially in the days after the chemo and radiation have been given and the white blood cells are declining or non-existent. this is when he will experience the most discomfort in every aspect - take the drugs - there are no points for being the tough guy.

Recognize that for weeks, maybe months after all of the chemo, mental functions will be diminished - he will not be as sharp as he is now. it will all come back, but it takes time, and you nor anybody else will understand why, it is called chemo brain, it is real, and it does take time to recover from.

Get support, accept support, realize that it is ok to feel a little or a lot lost, scared, concerned, bothered......these are all normal, just don't let them consume either of you. Coping is important.

There is a whole lot more, but these may help you start out.

I wish you and your son the very best of luck and health.
Dan

I too am very sorry to hear that your son's disease has progressed. Is he having the transplant at NIH?
God Bless and I wish you all the very best!
Sally

Just wanted to add my very best wishes for your son and you at this challenging time. Will be thinking of you and so hope that all goes well.

Relentless Against SAA,

There's a live webinar on June 2 coming up, covering how a patient prepares for a transplant, what happens during a transplant and what precautions should be taken immediately following a transplant. It includes a chance to ask questions and get expert answers.

My wife and I first prepared for her transplant by working with the hospital's transplant coordinator. They gave us a notebook full of information, and we studied everything and toured the transplant wing ahead of time. It really helped us feel that we knew how things were going to be done. There were certainly ups and downs, good days and bad days, during the transplant and during recovery, but we were definitely part of the team, and that control makes you feel much less helpless. Just as importantly, it improves outcomes.

Since your son is a young adult, he's probably used to staying in close touch with his friends. I think it will be very helpful to share information ahead of time with close friends, so they understand the basics and won't shy away. We had a laptop computer with us, but most of the time my wife wasn't up to using it, so I handled most messages to our support team back home.

When you're stuck in a hospital, knowing that you have a rooting section is great, and perhaps some of his friends can visit him in the hospital. Just make sure they check with you first to see if it's a good day to visit, and know what the hospital procedures are.

Best wishes for a speedy recovery for your son, Sue. Having a child with the disease would be much worse than having it yourself. But having a 'relentless' mum like you is a massive plus for him!

All of us here are more than happy to help you and your family with any ques or concerns you may have. I had a MUD transplant for PNH 3 yrs ago. My experience went fairly well, but as you know everyone has a unique experience as far as side effects of meds and treatment, GVHD, etc. Younger people usually recover more easily from these types of ordeals, so your son has that in his favor. We all wish you well.


Mario

Thanks for all your thoughts and kind words.
Does anyone know of good articles I can read to prepare myself for The BMT journey? Also, good articles on Monosomy 7 MDS patients treated with BMT would be helpful.