Day 46 mds allo unrelated transplant, discharged to hotel advice?!?

[rainbows and glitter]

Hey everyone, so I posted before but haven't in a while...I am day 46 today and got discharged from the nih yesterday to a hotel..I am on prednisone for some mild gvhd of the skin and gastro. They are tapering it down over the next few weeks..I am so nervous, I know it's probably just the steroids, but I am looking for feed back. I need advice, tips, successes stories. My ANC and counts are all good and I haven't even needed a blood transfusion or magnesium or anything... I feel like I am worrying for nothing. I am almost 100% chimera and my last bmb came back good. Should I really be worrying this much? Or am I like on the home stretch now? Or too soon to tell. Gosh I am overwhelmed.

[maggiemag]

Hello R and G,

Congrats on Day 46! I have no experience to share, but I can suggest you go on over to the message boards at the Leukemia and Lymphoma Society. They have a very active board on transplants, and I know they will be able to really help you. It's at lls.org and follow the links.

Mags

[DebS]

Okay, R & G, breathe!!! I know it is easy to say and everyone has told me that a million times.

But for practical advice:

1. Make sure that you still use wipes and are extremely cautious about cleanliness

2. Eat and drink and drink and eat--one of THE hardest things for patients

3. Keep the faith. God is on duty 24/7 and is more than willing to listen

4. See if you can get some sunshine--either through a window or outside if it is allowed. It is incredibly healing. Of course you need sunscreen

5. Check the lists for post transplant and advice on these forums. It is the best!

6. Do know that steroids are incredibly helpful, but they can make you a little crazy. I only had to take them once and I was bouncing off of the walls

7. Look up all of the successful and ongoing transplant stories. That will give you courage and ease your mind a bit


I have only listed a few things. There were so many kind and caring people that did this for me when my husband was pre-transplant. We are now at day +38.

Best of luck to you. I think that you are doing great!

Deb

[Tii]

Hi there, congratulations on day +46

I was 11 months old two days ago and my allogenic bmt has been the longest recovery in the history of my doctors' books! After I got discharged from the hospital in January, I visited the hospital 2 times a week, then once a week, then once a month, now every 7 weeks. I received blood products until July, returned back to work in August, discontinued the last tacrolimus in September, I feel absolutely great, but still have that worry. Did it work? Is it coming back? Am I going to die because of a common cold? Am I doing everything possible to avoid infections and I am eating the right things?

Worry is a normal feeling, but you will start living the "new normal" with your daily routine and within the next few months the worry lessens. The milestones yet to come are the great feelings to look forward to. Your port removal, your 100th day, discontinuation of meds, going back to the gym, work, hobbies, they all just feel so awesome, and you feel so proud of how far you have come.

You are so totally on home stretch, the worst is over. There will be steps forward in your recovery, there might be steps back, but with determination and positive attitude you can overcome all the hard times. Do call the doctor for any questions you have, they will be happy you asked, rather than not ask and worry. I always write my questions down and then I write down his answers to remember them later on.

Hang in there, we are here to help and share our experiences. Yet no transplant is alike, but we still share the same feelings of worry, concern and thoughts that you are experiencing. I joined a group at a local cancer community center, I find that very beneficial, although I am the youngest there but regardless of age or diagnosis, we share the same feelings and it is nice to talk about them.

Tii - 37yrs MDS (11 mo old)