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

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.

Good morning,
It’s a very stressful time right now, but remember to keep the faith. Please talk to your social worker at Mayo-Jacksonville, they will help you find what you need (caregivers, etc). I was very fortunate to have my Mom and daughter as my caregivers. I lost my job, but was able to keep my insurance under COBRA plus the social worker found multiple agencies to help with cost. I filed for disability post transplant and was granted disability benefits immediately. The Social Workers are excellent at Mayo in helping you during this time.
As far as the BMT procedure, my caregivers were not allowed in the room at Mayo-Jacksonville. If you have any questions, please feel free to ask, I will try and help answer them. Lots of prayers for you and your husband.

He will be in-patient for a week prior to day 0 and approximately 3 weeks post-transplant. Then he has to stay within 30 miles of the hospital until the end of November. We live 47-55 miles away (depending on the route taken). I am not concerned about lodging. We have that taken care of through the hotel and Hope Lodge that are near or on campus.

If we could go home after he is discharged, then care wouldn't worry me. We have friends that are local and can help. I am just trying to work out his 24-hour caregiver (me and others) plus taking care of the dog, three large fish tanks, and a koi pond. For his care, I am checking with agencies and also through Care.com. My experience with both of these has not been good. I used both when I took care of my sister who had ALS. Both were unreliable, frequently people were late, called in sick often, or agencies didn't have anyone to send.

My work has been fantastic, and I know they will continue to work with me with my remaining FMLA and vacation time. I have to keep working so that I maintain our health insurance and we have some income.

My anxiety is caused by trying to work out a schedule in my head for being with my husband, taking care of the dog, taking care of all of his fish tanks and pond, working, commuting through Jacksonville daily (the traffic is awful) and have care for my husband when I can't be there.

I know I am making more of it than it will be. I am just worried and scared. I appreciate everyone's support and reassurance; It does help.

My husband was with me while I was getting my transplant. It was uneventful. I don’t think your husband’s doctors are anticipating any problems, but each transplant center has its own procedures. I wouldn’t be concerned about that. The transplant is a slow drip, since they use gravity for the transfusion and not the pump.

Talk to the social worker on the transplant floor - mine was excellent about supporting me and my husband.

Hi @caregiverx2. I know the stress level is high right now for both you and your husband. There are so many unknowns and everything is coming at you so quickly. I’m so sorry that the arrangements you made for help back home has fallen through! That’s really troubling for you. Are there any local church organizations, neighbors or volunteer services such as Kiwanis or such who would be able to organize a ‘help chain’ to rotate people to help out? I hope you find someone soon so that you can at least feel at peace for your home situation.

I’m also wondering about the Family and Medical Leave (FMLA) which allows up to 12 weeks to care for an immediate family member (i.e., spouse, child, or parent) with a serious health condition. That might help with your job situation! Here’s the website:
https://www.dol.gov/general/topic/benefits-leave/fmla
I can’t help with that, but I can help answer questions about the transplant. There is a chemo regimen before the transplant called Precondition. This protocol cleanses the bone marrow to allow for the new stem cells to set up housekeeping in a clean, healthy environment.

The day before chemo starts, your husband will most likely have a port surgically implanted. All of the infusions, many of the meds and blood draws will be through that port. It makes life a whole lot easier throughout the 100 days.

Basically for the infusion itself, the bag looks just like a blood transfusion bag. It’s connected to the port and infused into the blood stream.
There will be two nurses in the room. Your husband will not be alone! One nurse will give your husband a pretreatment of medication such as Tylenol and Benadryl or Solumedrol in case there are any reactions and check his vitals. The second nurse will be present to verify, with the first nurse, that the name/birth date on the bag of stem cells matches the information for your husband. They will be with him throughout the infusion. In my case, we just sat and talked for the half hour.

They’re not anticipating anything dire to happen. Any reaction they will be watching for are similar to any reaction that could happen with medications such as:
Full body flushing/facial flushing, itching, hives
Trouble breathing, shortness of breath, coughing, chest pain/tightness
Abdominal cramps, nausea/vomiting
Light headedness
The meds they give him beforehand help prevent any unexpected reactions.

After that, depending on the time of day he has the infusion, he may be able to return to your lodging that day or the next. He’ll return to the clinic daily for blood draws and any meds and infusions such magnesium.

I hope that gives you a little more reassurance about what to expect on Day 0. If you have any other questions, please don’t hesitate to ask. I’m here for you as well as members like @katgob, @alive @edb1123 @kt2013 @jenmkr63 @jrwilli1 @tkidd51 and many others.
Are you at Mayo-Jacksonville? If I remember correctly, @tkidd51 had their transplant in Jacksonville. They may be able to offer you some first hand information about what to anticipate while there. ☺️

caregiverx. I want to say to just have a rest. Deep breathes. I would have expected the doctor to know. COH where I was treated had a transplant team. Do you have a team? In the hospital an RN is assigned to each patient. They have more than one patient but visit for meds and checks many times during their 12hours.
Have you received the list of chemo drugs he will get? Precautions. They do not know how his body will react. I know when i had chemo for breast cancer, the fewer in the room is best. The RN wore a special paper gown. Chemo is toxic. For my transplant cells, the head nurse asked if i wanted a picture with me and the cells. Not till right now do i realize the bag literally has changed my life.
I do not know the donor, a 26 yr old from Europe. I got to write a generic letter to thank him for his gift.
The hospital may have rules on who is in the room for the transplant. I feel it will always be about the safety of the product and the patient.
I understand about the caregiver. I did not have one confirmed till 1 week before. I stayed at her house until day 100. Day 24-100. I had no family members who were able to help, no spouse or children.
Take it one issue at a time. Pets. Do they need daily care? I know i looked up the caregiver cost in California and it was 96,000.00 for the 76 days out of the hospital for 24 hours.
I did not have all the dreaded side effects, so I am grateful my friend stepped up. My caregiver helped with a drip med i had infused at home for 60 days, until i saw an extender piece on utube where i could do it myself.
I understand needing to work. I used all me medical hours, got 30 hours at half pay and was docked 1.5 days. Wow. It was a lot of money taken out of my July paycheck. I had planned to work one month before i did, remotely, but the HR director at the college did not respond timely. It took defining the letter the Dr sent nearly when i was released from the hospital for a month for the director to final ok me to work from home. One month late. We are still working on that. I have plenty of work to do, and so far after 1.5 months i have a good pattern. Ready to work with my difficult supervisor to finely define what i do.

This has been one of my biggest stressors. My BMT after the hospital was in the beginning about foods to eat, drinking a lot of water every day and starting exercise.

Above all else, use a checklist and keep a journal. All your questions, fears and triumphs!! You will be amazed when you go back and read it. Living it takes, faith love for your spouse and courage to be the best you that you can be.

Eleven more days until my husband goes back in the hospital to start his countdown. Day 0 will be August 21. Getting nervous. I was okay until the transplant coordinator gave us the chemo schedule and started talking about preventing seizures from one of the drugs. She said, "don't be alarmed when you see padded rails on the bed." Then she informs us that I can't be in the room when he gets the stem cells. I will have to wait down the hall. This added to my concerns. Do they expect something bad to happen? I know this are just precautions and we have a really good team. However, recently they scheduled an appointment to put my husband on chemo pills for maintenance until his transplant. This was on a Friday. He started the pills on Saturday and spent Saturday night and Sunday throwing up. Then we get a message on Monday, saying STOP taking the meds. The doctor didn't realize his transplant was so soon and he needs to be off the meds for two weeks prior to chemo. This did not reassure me. Didn't he check his chart before issuing instructions concerning medication? So, I am getting stressed trying to coordinate everything for the 100 days post-transplant since my husband can't go home. We have no family here to help. The help I thought I might have didn't work out. So, I am working on hiring people. Boy, is that expensive. We have animals that need tended to. I have a job I have to keep so we have insurance. I know everything will work out. These are just a few of the stresses that are going through my brain right now. Thanks for letting me just vent. I know all this is a normal part of leukemia and SCT care but this is all new to me.