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

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.

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.

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. ☺️

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.

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.

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.

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.