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

It’s wonderful news that her blood counts are improving! She’s definitely on the upswing! The rest takes time and patience. Slowly she’ll regain her strength and feel like eating a little more. Keep me posted! ☺️

Our 25 year old son is on Day+21 post Bone Marrow Transplant. He has had FUOs(Fevers of Unknown Origin) for three weeks now. He has also not been able to eat solid food during this time due to high volumes of nausea.
Infectious Disease dept. discovered he has a yeast infection which could be causing fevers as well as the nausea.
They had to remove his Central Line due to yeast contamination. He was on a host of antibiotics previously but now getting AmBisome via I.V. He has been struggling very hard without relief.
Anyone else have fevers post BMT?

Hi @leilab1 At day 21 post transplant your son’s blood numbers most likely still pretty low as engraftment would have happened only recently. Once that takes place the newly planted cells start churning out healthy blood cells. The white blood cells may help bring about a more positive change. But it’s so important right now to keep up with the antibiotics, anti-fungal medications (AmBisome) to fight the yeast infection.

At this time, as you know, he is very vulnerable to infections whether bacterial, viral or fungal. I don’t meant to alarm you but when illnesses happen at this early stage in the transplant they can be difficult to treat and escalate quickly. That’s why his doctors are treating this aggressively. Neutropenic fevers are troublesome because often it’s really difficult to find a cause. So it’s imperative to arm your son with those strong broad spectrum antibiotics. Now that his doctors have found the culprit he should start improving.

Nausea was my best friend for quite some time too. I’m so sorry your son is having that side effect. It’s miserable. I was on 3 different meds and finally daily IV’s of a strong anti nausea. But the one that helped me the most was sublingual Zofran tablets. They dissolved immediately under my tongue and brought me enough relief to get a few bites down.

Anything he wants is on the table! (Unless he has a sugar restricted diet for the yeast infection ). It doesn’t have to be healthy as long as he gets calories in and if it contains protein all’s the better! I ate Lactaid Ice Cream. It’s delicious but lactose free so it didn’t cause any tummy issues. My husband would make me daily shakes with banana chunks or canned fruits, because no fresh fruits or veggies were allowed. The banana had to be disinfected on the outside before peeling. My husband would also toss in a teaspoon of ground flax seed (that he baked first to 160 degrees to kill bacteria)

I tried to eat some Activia yogurt daily though I could only get down about 2 spoons-full at a time. I ate Rice Crispy bars too. Actually it was my Mayo Dietician told me try those. Other things that may appeal to him are banana bread, apple sauce, cheese sticks (but no artisan cheeses. They must be pasteurized), granola cereal just to nibble on. I couldn’t stomach Ensure shakes nor could I stand the taste of the protein powders. My husband would sprinkle Carnation Instant breakfast into my shakes.

I’m 4 years post transplant now and feeling like nothing ever happened. So I want you and your son to know this is possible. At 21 days, it’s so early in the game that nothing I can say will have him believe me that he’ll feel better! But he will get past this one minute, 1 hour, 1 day at a time and then get his life back.

I want to share a story with you about a young woman (19 at the time) named Sky whom I mentored through her BMT. I think it will give you some hope.
https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/mayo-clinic-connect-brings-together-2-women-with-leukemia-46-years-apart/
Has your son ingrafted yet?

Hi Lori,
Thank you for sharing your valuable insight. His neutrophils were 30 on Thursday, August 24 but have more than doubled today Friday and are now at 70. It's a glimmer of hope and we continue our prayers for this upward trend. We will have the opportunity to see him this weekend but I'm preparing myself for the worst. Is there one thing that someone might have said to encourage you through that difficult time? I spend most of my days in tears for him.

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?

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!

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.

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

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!

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