My Bone Marrow Transplant (BMT/SCT) story: Will you share yours?

Hi @tim347. Your story with AML echos mine. We’ve gone through quite an arduous journey to get where we are today. I read that you had a relapse so I’m relieved to hear that you’re doing well on the meds you’re taking.

Thank you for sharing about your PDF file of your journey. I also don’t know how to post that but will check into it.
In the meantime please feel free to keep jumping into these conversations as the questions arise! It’s so important for those of us who have overcome and endured these experiences to become someone else’s survival guide. ☺️

I’m so happy you found our forum where you can share your story. If interested feel free to jump into these conversations!

~Chronic GVHD ~ Let’s talk about it!
https://connect.mayoclinic.org/discussion/chronic-gvhd-lets-talk-about-it/
~Snapshots of hope: Life on the other side of transplant.
https://connect.mayoclinic.org/discussion/snapshots-of-hope-life-on-the-other-side-of-transplant/
Do you have any chronic GVHD?

Lori,

I had a BMT in 2020 to treat AML. In an attempt to be helpful to other people, I wrote an account of my experiences, with a focus on lessons learned. If anyone asks, I can probably find a way to make a PDF file of it available online, although I might need some suggestions about how to do that.

When I started treatment I was within 8 days of my white blood cells reaching a fatal level. I am still alive 3.5 years later, so I might have done something right. The Appendix contains a list of lessons learned. Here is the short version:
Reach out to everyone you know for help.
Do what your doctor wants you to do.
Hang on to hope.

I hope this helps. If you have questions I can try to answer them.

I too am an AML survivor and thriver! I celebrated my 3rd rebirthday in July and I am doing great! I went through a lot of the things your son is going through - nausea, fever, infection in my port. Eight days after my transplant, I was hospitalized for 12 days so they could give me fluids and get my fever down. The Protein shakes that Mayo nurses made for me were great so I made them at home. I also ate a lot of applesauce. But I got through it and started rebuilding my strength. Now I golf and play pickleball, and enjoy other activities just like a “normal” person! I hope your son can get through this difficult time because there is hope for a normal life on the other side! 🙏

Thank You for the picture of "your" rainbow. It is a symbol of hope for me. God Bless!

Thank You for your kind words of encouragement - it gives me a "push" to keep going.
Congratulations on your recovery!!!!

I agree with Lori - post-transplant time is brutal! Going into my transplant I thought everything would heal quickly. In reality, I had a lot of complications during that first year. One encouraging thing one of my doctors said was 5 months after my transplant. I was in the middle of severe upper and lower GI GVHD and was totally debilitated by high dosage of prednisone. My husband was pushing my wheelchair into the doctor’s office. The doctor said: “You are at your lowest point right now, but your gut is in the process of healing. Now, we have to get you out of this wheelchair, or you will continue losing muscles.” I came home and forced myself to start walking around my living room 3-5 minutes at a time. Before I knew it, I was walking for an hour each day. My doctor’s gentle push paid off - I work full-time, walk 4 miles each day and enjoy my life to the fullest. It’s a journey, we take one step at a time, and it’s important to keep going forward!

Hi! I have been blessed with 10 years of survivorship after transplant for an aggressive AML. In reading your notes about your son, it brings back many memories. The side effects are tough, but it sounds like your son it pretty tough too. I can sense your distress about him being in the hospital alone, but as a former ICU nurse, I can assure you he will get VIP care. Nurses always do a little something extra to bring comfort to the patient who doesn’t always have family present. And I am sure he wants you and your husband to stay healthy and strong too.
I learned a lot during my treatment/recovery and what is really important in life. Family is everything and what a blessing he has in you. Please know I will keep all of you in thought and prayer. I am sending you the rainbow I photographed this morning.
KMZ

What a tumultuous time you’re all going through right now. I wish you well with your own health condition. Boy, things can never just be simple, can they?!
Your son will have changes ahead but he should progress nicely and eventually get past this critical stage. Hopefully life will have an upswing for all of you. If your husband has any questions about caregiving and needs support we’re all here to offer encouragement and guidance for him as well. Think of us as an extended family. We’re here to give to hope. Sending a virtual hug.

Our son is currently at Mass General Hospital in Boston. It's a 6 hour round trip for us and we
sometimes stay overnight in the outskirts of the city. He has no care giver with him at present which makes it all the more difficult/frustrating. When he is ready for discharge, he'll have a care giver, my husband, who'll be with him in the recovery facility.
I'm dealing with my own health issues which is why my husband will be the care giver.
Thank you for the encouragement - it means everything to us right now!

It’s very encouraging with your son’s neutrophils climbing. His all important new white blood cells are ramping up. They’re the disease fighters in the body. It may not take care of his yeast infection…still need the meds for that. But his strength may start returning which will work along side the meds to help him to start feeling some improvement. Right now, he’s going through an incredibly arduous time.

Like your son, I had so many people telling me, “I was going to get through this, or feel better soon”…you know, things said to comfort and pacify sick people. Honestly, even though I trusted my transplant team with my life and they’d ‘seen it all’, when they would tell me that I was going to feel better soon, I’d just smile but inwardly roll my eyes. Unless a person goes through this themselves it’s impossible to convey how low you can feel. But my team was was right. I turned that corner and things started improving. Our bodies are built to heal and they’re capable of overcoming great odds.

My mental turning point was about 1.5 months post transplant. I had to go to the lab for bloodwork and wasn’t having my best day. I’d tried my best to be presentable for public viewing. ☺️ But after my months of chemo for the AML and excitement with then BMT, I looked a little rough around the edges.
A woman across from me in the waiting room started talking to me, commenting on my shoes. She was about my age of 65 at the time and looked fit, with a healthy glow of having been in the sun. I felt deflated thinking “will I ever be well again? She asked me if I had a allo-transplant. I said yes. She looked at me and said, “Oh, you’re gonna be great! I’m here for my 2 year followup and you’ll be surprised how good you’ll feel!” The guy next to her said, “No kidding? I’m here for my 5th anniversary check up!” Then we all chatted until I got called in for my appt.
Honestly, my husband and I looked at each other and for the first time, we were filled with hope! It was a validation to all the words my fabulous team kept telling me! When I heard it from someone who actually walked that walk…it had a huge impact. That’s why I’m here on Connect and also mentoring for my local cancer clinic, helping patients who are dealing with AML and/or heading to transplant. Seeing or talking to someone who has survived and is thriving is worth its weight in gold.

We have several other members in the forum who have also had allogenic transplants. I’d like to introduce you to a few of them… @alive who recently celebrated her 7th rebirthday, @kt2013 who hit a 10 year milestone, @edb1123 who is coming up on 3 years and I just celebrated year 4. We’ve all gotten a second chance at life but it wasn’t without work on our part.

As a mom, I know this is terribly difficult to watch because you feel so helpless and I know as parents we try to be all stoic and brave. It’s ok to let your son know you’re concerned and feeling emotion. Your son will look sick and tired…think the worst case of flu you nursed him through. So just take cues from him. He may not feel like talking. He’s exhausted and not feeling well. But your presence there will be encouraging for him.
How far away is the transplant center for you? Does your son have a full time caregiver with him?