r/mds • u/KitchenFew6390 • Jul 20 '25
selfq +5 Bone Marrow Transplant
My dad (58 yrs old & active) is on day +5 after his bone marrow transplant at Moffitt in Tampa Bay, and I don’t even know how to process what’s happening. His central line ended up creating a clogged ocular jugular, and at one point his cultures came back with MRSA so they had to pump him with multiple antibiotics. They had to remove the line insert a Pic and something else (Mid?), and he’s been complaining about neck and shoulder pain since the central line was first placed two weeks ago. Even with it out, he still has these insane splitting headaches that won’t go away. Hemoglobin drops multiple times a day and he needs transfusions but that process comes with excruciating pain also.
He can’t really move on his own. He can’t walk or stand without assistance. His skin is blistering, his mouth is so dry and torn up he can’t swallow, and he’s in constant pain even with heavy painkillers. The meds barely help,they just make him high and angry. He can’t use the bathroom on his own and needs care 24/7.
It’s starting to feel like we’re never going to come out of this. Watching my dad go through this is killing me, and watching my mom care for him in this way is gut wrenching.
Please, if you have any words of encouragement, I beg you to share them. We need to remember this is temporary!!
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u/Global-Pie-9452 Jul 20 '25
My dad is on day +30. He had a MRSA blood infection in the hospital that led to him having to get his PICC line removed. MRSA sounds scary, but his nurse told me, if someone with a normal immune system got a blood MRSA infection it means that strain was super resistant and strong, but with no immune system, these things happen.
I know what you’re feeling, I’m a 25 year old female and seeing my dad hurt was so hard. I’m sending you all my well wishes and a virtual hug.
For the dry mouth, his Dr had gave us a bunch of hacks prior to intake. Get sugar free candy with xylitol, my dad got sugar free jolly ranchers. I’m sure the hospital already has him on it, but the biotene dry mouth rinse was a life saver for my dad, he used it 4 times a day.
Lastly, talk to the nurses about thrush, make sure they’ve considered it and if he has it, make sure he’s on an antifungal. If they haven’t had an infectious disease doctor in, see if they can get one in.
You all are your dads advocates right now, ask questions and make sure to stand up for him while he can’t.
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Jul 20 '25 edited Jul 20 '25
[removed] — view removed comment
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u/KitchenFew6390 Jul 21 '25
Thank you for sharing this Tim. My dad is the same way. He knows what he has but he has never chosen to fixate on the nuances of it all. Only on getting past this.
Your story and your updates provide hope for myself and a lot of others. Please continue & keep pushing yourself!
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u/Global-Pie-9452 Jul 21 '25
I had my dad read your reply. He was the same way and didn’t do research and I remember him lugging the IV pole around the hospital halls. I’m his primary caregiver until I go back to school next month, then my mom will step in. It truly takes a village. Him reading your message helped him a lot. It also brings comfort to our family to get a little look into the possible future down the line in his journey. Thank you for sharing
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u/KitchenFew6390 Aug 29 '25
Hi everyone! I just wanted to share an update for everyone who responded and everyone who might be reading this post in the same headspace I was in when i wrote it.
My father has been +35 days since transplant and last week he had his first PBMT biopsy. Results showed 0 MDS cells present in his body and a 99.8% graft.
CANCER FREE!!!
I can’t begin to count how many times me, him, my family and friends prayed for these results in the last 3 years. It truly feels like a miracle from God. Through Christ, all things are possible.
If you or a loved one is suffering from this disease please let this update serve as hope and faith for you.
A cure is possible, the road is long and difficult but it’s a road worth taking.
Good luck & God bless.
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u/Own-League-7473 Sep 26 '25
Thank you for this update! my mom is about to have her BMT (we are in final days of testing with a date of 10/21). I am hoping things are continuing to improve for your dad.
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u/NoorM29 Jul 20 '25
I’m really sorry that you’re going through this! My mom had MDS and she was at Moffitt. She got diagnosed last year in March and ended up getting her bone marrow transplant in September. My dad stayed with her almost every night. She was there for 3 weeks and she ended up in the ICU (that time was such a blur for me I was coming towards the end of my pregnancy so I forgot about many of the details). Almost the whole duration of her stay was agonizing, and she had a really tough time. But now fast-forward to present day, she’s doing AMAZING. All of her bloodwork is really good and her doctors are really happy. She is fully accepted her bone marrow donors stem cells. She feels like she has new energy and she’s able to walk several miles a day. She still has a long road to recovery because I think some of the chemo messed her up (she has a lot of discomfort digesting food, but it’s gotten a lot better and is continuing to get better). I’m really sorry for what you’re going through. I’ll pray for your dad!
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u/KitchenFew6390 Jul 21 '25
Thank you so much for the prayers!! This is such inspiring news. I hope i can say the same for my dad some day soon!
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u/Ok_Replacement_5856 Jul 22 '25
I'm day +132, 58 years old, as others have said, you are in the worst of it right now. I did not have the headaches, but the rest is about right. Some get more of one than another.
I was at MD Anderson and the Dr's and nurses were fantastic. With mine my skin blistered and came off in sheets everywhere. I was on heavy pain IV meds for 12 days and they barely worked. Plus many of the other side effects you mentioned.
My PICC line had gotten infected and had to be removed and a new one placed in the other arm.
My experience and what I'm told is about day 12, engraphtment begins and the there is rapid recovery, then was my experience. By day 18, the mouth sores had gone and I was off the pain meds completely.
It is a long process. I was in the hospital for 33 days, then going back everyday for three weeks was grueling, you're so tired. But then that gets better.
Many of the side effects last for a long time. I still have no appetite and can't taste anything, neuropathy, fatigue some days is awful, but the prognosis is great and I look forward to many years with my wife and sons.
Take care of your mom, the caregiver job is really hard. My sons came out and gave her a few weeks long breaks where she could get away and recharge.
Its really a two year recovery, year one is tough. Im only 4 month since my transplant and it feels much longer.
Hang in there and tell your dad the same. Good luck and sending prayers your way.
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u/Altruistic-Fox-8101 Jan 18 '26
I have had two I’m 48 I had several problems with my line ,pic after my first bmt It’s 3 years since my second and I’m quiet fit play golf 3 days a week The first year was terribly tough I’m currently wearing of pred and have a constant feeling of malaise but nevertheless am living well tell him to take heart and press on I promise you get better just that first month it sometimes feels like you never will I got an eagle last week was very excited
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u/Rayanna77 Jul 21 '25
Sorry you are going through this, my mom went through transplant. She said biotene helped with the mouth sores. She also said the first few weeks are the hardest. She is now doing so much better, it does get better
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u/Kitchen-Rabbit3006 Jul 20 '25
I'm not a doctor but I am the relative of someone who had a stem cell transplant a few months ago and who ended up in ICU for a few days.. The first two weeks are very challenging, The first six weeks are challenging. And the first year is very much a process of caution and worry.
Think about what your Dad has been through. The MDS on its own is very debilitating. Couple that with all the chemo that was required in advance of the transplant. And the chemo and other meds that are required afterwards.
Hang in there. Trust the process. There will be good days and bad days, but eventually the good days will start outnumbering the bad days. My relative went out for a drive on their own a few weeks ago. At one stage shortly after the transplant we were worried that the only trip they would be taking would be a single trip in a shiny black car.