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

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.

caregiverx2.

You sound hopeful with good plans.
it will work out. Surprisingly as everyone said, it is often workable in ways we can never imagine. I love all your animals!!
With insurance, I noticed after my 100 days, that mine covered care for a number of hours. I love all the ways you are looking for extra care and believe that footwork will get your results!!
Hope and faith that you are able to handle each step on this walk to help your husband and you. Positive vibes sent through the universe for you.

Thank you for prayers and feedback. I will speak with our social worker about caregivers. Unfortunately, we do not have any family in the area. Everyone is 5+ hours away, work, and have young children. My husband lost his health insurance. Fortunately, I added him to my insurance last year during open enrollment. Financially, we will be okay. He has long term disability right now and is scheduled to start receiving his first SS disability check in October. But, since we depend only on my health insurance now, I have to keep working. My company has been very gracious and accommodating for all the time I have taken off. They worked with me for the last four years while I took care of my sister who had ALS. She passed at the end of January. That is about when my husband started feeling bad and then he was diagnosed with B-ALL with hypodiploidy in mid-March.

We will get through this transplant and are making plans to go to Yosemite next year. We are hopeful and planning for our future. It is just figuring out short term issues that stresses me. I just like to have everything in order and right now it just feels chaotic. Sharing my concerns and anxieties has help. I appreciate the quick replies from everyone.