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

Good morning, @caregiverx2 I was hoping to see an update from you with your husband’s SCT transplant. My by reckoning I think he’s on maybe Day +7 or 8? He may be entering generally, the roughest week post transplant. How is he doing? The job of caregiver isn’t an easy one so, how are YOU fairing?

Checking in with all my fellow BMT peeps this morning. How’s David doing? I think he’s at Day +7. The next few days can be a little rough until the new cells engraft and set up housekeeping. He’ll start feeling better when he has some neutrophils on the job again! ☺️
Did he have any issues with his post transplant infusions? Give him an air hug for me!

Hi Lori. We are at Day 8.
It’s quite a ride. He had those cyclophosphamide IV treatments Sunday and Monday as an inpatient. He got pretty sick completely lost appetite and then constantly on the toilet. They did a culture and found “c dif.” Started on vancomycin to add to his cocktail of drugs.
Began to feel better Tuesday was eating so discharged on time. Went straight to bed.
Nausea managed well with medication.
Felt good Wednesday and appetite returned. Yesterday bowel issues which continued today. He’s very fatigued and those counts are plummeting (we will go back for a platelet transfusion this afternoon).
We are taking each day/new development as it comes and the Station 94 team is giving him great care, trouble shooting problems and answering questions.
Hoping for engraftment asap.
He’s an ideal patient, grateful and kind and still witty.
I’m doing ok during the days but oh my cresting anxiety at night.

Quite a ride is an understatement. I’m happy to hear David’s great except for the C-diff. That’s a ‘pain in the butt’… Keep up with the vancomycin and add 2 servings of Greek yogurt daily to help restore his gut biome from the C-diff! It’s opportunistic and can hit when the defenses are down. With his numbers dropping, he is getting near rock bottom with his immunity. If he’s on day 8, engraftment can happen as early as 10 days but more often around 14+ days. So hang in there!!

He’s for sure an ideal patient with his upbeat and sunny attitude! It can make a difference for him and everyone around to remain as positive as possible. Some days are more challenging than others. ☺️ He’s in the best possible hands with the team in station 9-4. I can close my eyes and instantly be brought back 5 years ago to the rhythm of underlying calmness on that floor. I never lost a moment of sleep worrying under their care and guidance of my doctor.

Now for you…I’m going to suggest some mindfulness exercises to help with that nagging nighttime anxiety. Nightime is the worst when there is too much quiet. You’re easily distracted during the day. Different ballgame after lights out! Here is a good site with several exercises.
I’m seldom stressed but when I have a bad moment I still use mindfulness exercises to move past the anxiety. https://www.verywellhealth.com/mindfulness-exercises-5204406

Keep me updated! Air hug!

I want you to know how much we appreciate your help Lori. Blessings on you.

Thank you dwolden for the update. Lori just reminded me about the quiet of the hospital. The routine. I was in the hospital the who time from the6th to the28th. The med team including the CMA and the RN began to know me. I see that they hopped into assist David with those dreaded symptoms. The attitude as Lori mentioned was vital to my good feelings each day. I was greeted with smiles, and they always asked, "How are you" and listened. I had a transfusion during those days too. The best part about this is the medical team knows and make it happen. Your success each day is their success as engraftment happens. Our hospital was soon to get digital boards for the patient rooms. We still had the ones to write on. The RNS loved reporting daily as my blood numbers rose. I hope you two rejoice too!!!
Oh my, this time will seem to have flown by in hindsight. I am day 142~~~~ oh my!! My red cell numbers have finally risen just about the minimum!!!! The other components have dipped but all remain great. Today I was told i look great!!! Antibiotic for the filling i will have re-done at the dentist net week. Back again in 2 weeks.
I just need to say to myself that i am a bone marrow transplant patient. I go places. I went to the beach, but no crowds. Outside for nearly anything i do.

@loribmt
He is doing better. He developed Cytokine release syndrome on day +1 and had chills and fever for a few days until they gave him Chemo on days 3 and 4. The fever went away by day +5, but then the diarrhea came. He is on day +9 and I think everything is "back to normal". His white blood count is down to basically nothing now and he gets a bag or two of platelets every day. His hemoglobin is slowing dropping, so his fatigue is increasing. But other than a few rough days at the very beginning he is doing well and is in good spirits. He jokes with the nursing staff and has made friends with some of the other transplant patients. He will be inpatient for another 10 days at least. It depends on when he starts grafting.

Caregiverx- The BMT is not for the timid, meek or shy. The drugs of chemo we get release all sort of things from our bodies we have no control over. I had to use the toilet" cap " for a couple weeks. I finally asked my PCA if i was able to stop using in. Staying in the hospital they test all these body products daily. That is not a job for the meek, shy or timid. I think the joking and connections created between other patients humanizes the process. Every day is a new day. Aday at a time.

Hi @caregiverx2, As I mentioned before, the first couple weeks post transplant are usually the most challenging days. But hope is on the horizon as your husband nears engraftment. He’s at Day +9 and engraftment can happen as early as day 10 but usually around 14-ish and beyond. When that happens and you see increases in his neutrophil count, the march to recovery is on the move! By the time there are detectable amounts in the blood, the cells have already been busy inside his bones sending out protection. It’s really fascinating! Anyway, I digress. 😅
I’m happy to hear your husband is doing well and keeping his spirits up. It’s really special when you find others going through the same situation so I’m happy he’s making friends with other patients! I still communicate quite often with a friend I made during my transplant (and hers). She and her husband were in the same hotel where we stayed for 4 months so we became fast pals! Unfortunately they live 1,000 miles away so we seldom see each other. Twice the planets aligned and we had our Mayo-Rochester followups at the same time. That was fun…we got together for a couple dinners.
Thank you for the update! Both of you hang in there~this gets better. ☺️ Think Engraftment! 🧬

Good morning, @marylou329 Well? How are you doing with your new stem cells? I know there’d been some changes to your schedule and a few logistics to juggle, but if all went as planned then you’re at Day +4…the other side of transplant.
When you’re feeling up to it, I’d love to get an update on your progress. Were you able to make arrangements for your daughter to be ok in your absence?