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

Good morning, @caregiverx2 This sounds so trite, but the first thing I want you to do when you read this message is to pause, take a couple of deep, slow breathes…exhale slowly through your lips. It’s a simple but successful way to calm the jitters.

Understandably, tomorrow will be a big day for both you and your husband. It is the start of his countdown to his second chance at life. This opportunity to have a stem cell transplant may give him and you, many more healthy years together. So believe me, I understand the underlying anxiety you’re feeling today as you approach day -7.
I think you’ll find the first couple of days won’t change much in the scheme of things. Pre transplant conditioning will take place daily with an infusion of meds, usually as an outpatient procedure. If I remember correctly at day -4, I as admitted for the last 2 days of chemo, then day of rest/flushing fluids and then Day 0.

The actual infusion of stem cells is very anticlimactic. It generally takes less than 20 minutes or so. You’re at Mayo where SCT’s are outpatient procedures so by the next day after the infusion, your husband most likely will be back with you at your place of lodging.
That can feel daunting but honestly, you're never far from the clinic. You’ll both return daily for blood work and possible infusions of meds or supplements like magnesium.
And, if there is EVER an issue, you have numbers to call the BMT/SCT team at the clinic 24/7 to get guidance. I did have a small issue about 7 days in and was readmitted immediately to the hospital. I promise you, that the teams at Mayo are exemplary with taking care of their transplant patients!! They will do everything in their power to keep your husband safe and comfortable. He’s in the very best of hands!
Has he had his port installation yet? What is worrying you the most?

Tomorrow (8/16/24) starts day -7. I feel unprepared and anxious.

I forgot to post the results I asked for on my portal.
My bone marrow transplant- engraftment= Chimerism-100% Donor/ the CD3- 98%.
I also asked her for what my blood type revels. AM I still A+ in any way or all 0+. She is ordering a blood test for my draws this Friday. Honestly, for me, these were the most important for 3 mo., next at 6mos. then 1 year and others they may have me do. Engraftment is what we want from a bone marrow transplant!!! I am grateful today, will drink my water, eat healthy and get out and walk!!!

They now have the bloodwork and admittance to the hospital on the schedule. I am glad I called. I would have hated to show up expecting to be admitted and they didn't have a room available.

We put so much trust in our transplant doctors, don’t we? I felt the same about my doctor too, not seeing him for several weeks during transplant. But the nurses or attending physicians would actually say, Dr S gave these orders this morning, or whatever. So I knew he was keeping tabs. 😉
You’re right, those trying times did go by quickly. Though there were some days when it seemed 5 minutes took forever! 😅

Glad to hear the flea situation is getting under control. Keep up the patrol for a couple more weeks after treatment just to make sure all the eggs are destroyed too. I’m so sorry you’re having to deal with that right now! What a pain in the biscuits!

Your sister…yes, having her spleen removed does seriously compromise her condition. This from the Mayo site: “After spleen removal, you're more likely to contract serious or life-threatening infections. Your doctor may recommend that you receive vaccines against pneumonia, influenza, Haemophilus influenzae type b (Hib) and meningococci. He or she may also recommend that you take preventive antibiotics, especially if you have other conditions that increase your risk of serious infections.”
So, I’m not sure who’s at more risk between the two of you. You have a new, immature immune system right now. It will get stronger over the next 18-ish months. It will never be as robust as your original factory installed model. 😉. So long term, she may be more compromised that you are. I hope this isn’t a case of sibling rivalry. LOL. Basically, both of you will have to be cautious to avoid infections or conditions where you’re at risk.

Lori,
I was told by RNs when I was in the hospital that my doctor was looking at my progress behind the scenes. He did have a hand in my care, but at COH they have a rotating every 2 weeks doctor who checked us daily. I got to see him the day after my release. I said to him I was sad I never saw him. He did say this is how it is set up t the COH. He did say then that the Doctors liked me and enjoyed seeing me. I then saw him for 13 weeks twice a week. Amazing isn't it how that time passes, and it is hard to remember.
As to the fleas, I have flea combed five off my cat in 2 days. If he does that scratch, I go to him and comb. I was using wipes that are cat safe. In the house I vacuum 2-3 days a week, use Easy Defense All-in One Flea Remedy on the carpet, couch and cat. Sadly, this easy-to-use cap for using the product lured me and it was not food grade!! I used it upstairs in my bedroom that no one is sleeping in. Today I am getting the right one and have more places to use it. I am not getting bit a lot. It could be the babies are dead and others have not hatched. My sister gave me text suggestions, but never came over to help. I have still not seen her in person. Does the removal of the spleen put her in more danger than me from my transplant?

Oh my goodness, @caregiverx2 This is not common at all for any experience I’ve had at Mayo. It’s not like them to drop the ball…no matter which campus you’re attending. I’m with @katgob, I hope you called scheduling and were able to get this worked out! Don’t hesitate again to call their desk or contact the doctor through the portal!
You’re right, this isn’t a time for things to not be clicking along on schedule. Was there any further conversation with scheduling about getting the orders from ‘pending’ to scheduled??

Hi @katgob, at one of the appointments before my transplant, my doctor explained to me that once the actual transplant process begins that I would not be seeing him very much. The care is transferred to the transplant team on 9th floor of the hospital and out of the clinic. However…he wanted me to know that just because I wouldn’t be seeing him in the clinic, that he would be behind the scenes getting daily updates from the hospital and making the daily decisions for my treatment. He actually did pop in to see me a couple times when he was on the floor for rotating ‘on-call’ weekends…and the night before the infusion.
After about 1.5 months of daily visits to the transplant clinic for bloodwork, infusions and such I was then released from the transplant floor and back into my doctor’s care in the clinic again. So I think every clinic has their own protocol.
How are you doing? How is the flea situation coming along?

caregiverx
I hope you called scheduling. If the orders are in, then when you call scheduling, the nurses need to follow-up with the doctor's office. Plus, at Mayo, they have a transplant team. Do not give up hope. Lori who got her BMB at Mayo is a mentor in connects. Suggestions will come from her and others. I remember a flurry of activity during my testing then suddenly hearing less than a week before my transplant that it was ago!!! Another truth for me is I only met with the transplant nurses at and beyond test point, never the doctor after the transplant was confirmed. Something else I did not know, was on Floor 6 where transplants patients have their rooms at COH, my hematology doctor was never part of the rotating doctor staff on floor 6. Daily we got visits from the Dr, RN, and staff who checked on us every morning. It never occurred to me my Dr would not pop his head in to check on me. Now I know this was a question i never thought to ask.

My faith in our Mayo team slipped a little bit more. I think they are having a change of staff and our main ARPN is going out on maternity leave. The last time we saw her, she mentioned that she would have various appointments scheduled before my husband's admittance for his SCT. She specifically mentioned us meeting with the doctor prior to being admitted to the hospital. A lot of appointments were scheduled but never an appointment with the doctor. I waited. The team has been on top of things since March and I have never had to worrying or double check behind them. So, I waited for more appointments to be scheduled. The schedule never changed. So, yesterday, I called to inquire if we had to meet with the doctor. Oh, they said, there are pending orders in here for appointments and bloodwork but it wasn't sent to scheduling. I am losing my faith in our team and this is not a good time for that to happen. This transition from chemo consolidation to SCT does not seem organized from my window. I hope beyond my small view inside the workings of the SCT everything is organized and working like clock work.