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

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?

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??

Forty-four days ago, my husband and I went to see his primary care physician. My husband presented to his doctor that he needed a heart stint. His self-diagnosis was based on his shortness of breath and other people's heart stint stories. His primary care doctor didn't say much except, "Go to the emergency room now." So, we left the doctor's office drove past three other hospitals and went to Mayo Clinic's emergency room. Looking back, that was the best decision we made. Because, boy, that diagnosis wasn't even close! The ER doctor told us his heart was fine but something "weird" was going on with his blood.

I now know that Leukemia is not just one disease but an umbrella term for blood cancer. His official diagnosis is B-Cell Acute Lymphoblastic Leukemia with low hypodiploidy. He developed TLS (Tumor Lysis Syndrome) immediately after starting his first round of chemo. That was so much fun, not. The good news is he has reached MRD, his kidneys are recovering, and his immune system is good right now. The bad news is this is a rare B-ALL and the prognosis isn't good. So, Monday, he will start the second round of Chemo and the search is on for bone marrow donors so he can have a SCT.

I have begun my arduous research on HSCT and what to expect. It sounds like a tough road is ahead for both of us. I am not new to caregiving. I spent the last 4 years taking care of my sister who had ALS. I did everything for her. It was an exhausting journey. Her funeral was less than a month before my husband's diagnosis. I was just starting to take care of myself again. And now, here we go again.

If anyone has any advice or information that might help me get through this, please let me know. I am glad I found this message board because I do not want to put this out on my personal social media. It is nice to know that I am not alone.

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

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?

@loribmt
Yesterday, they removed the PICC line from his arm and put a Tri fusion catheter in his chest and he also had the last (#8) lumbar puncture (intrathecal chemo).

All of his pre transplant conditioning will be inpatient. He will have to stay in the hospital from tomorrow until approximately September 11 (day -7 until at least day +18). I'm not so much worried about when he is in the hospital; it is when he is released that is worrying me the most. When he transitions to outpatient he will have to stay within 30 miles of the hospital. We live 45 miles from the hospital. We have a place to stay (thank you Hope Lodge) so that is a non-issue. But, I will be juggling to make sure he has 24-hour care, going to work, and taking care of the pets and house. We do not have family close by and we will have to hire someone to stay with him while I work and do everything else. This is going to cost more than I make but I have to keep my job in order to have health insurance. I have faith that it will all work out somehow. But that doesn't make my worries go away. The whole thing scares me.

Oh my gosh, you have a lot resting on your shoulders right now. The first few weeks will give you a breather. And usually the initial 3 weeks after transplant are the most challenging so he’ll be in the hospital during that time. By challenging, I mean he may have nausea, extreme fatigue and malaise until his new cells engraft sometime after 10-12+ days. The first week is usually ok but with noticeable fatigue and possible gut issues. By week two, the chemo side effects will make their presence known with potential extreme fatigue, mouth sores, nausea…all very common.
But by week three, with the new cells having engrafted in the bone marrow and set up ‘housekeeping’, he should start feeling progressively better with his neutrophils circulating again.

When he returns home, it is necessary to have a caregiver 24/7. But it’s not like bringing home a baby with constant monitoring or diaper changing. He won’t be an invalid unable to care of himself. Your husband will most likely sleep a great deal from fatigue. But he’ll be up, walking around the house, able to grab food from the fridge, able to shower on his own, etc. So the demand on the ‘day sitter’ is more to be there as a companion if he’s feeling weak. Basically, he just shouldn’t be alone for extended periods of time until his stamina and health are a little more predictable. Also, there will be required trips to the clinic for blood work or potential infusions. That falls on the caregiver as well to accompany him to appointments.

Do you have personal friends who might trade off on a daily basis who could come and keep him company while you work? Do you belong to any church groups who may be able to have a member stay with him?

This is the time that it’s ok to call on your friends! The proverbial ‘It takes a village’ doesn’t mean just raising children. It can mean checking in with ‘your village’ of neighbors, your friends, your husband’s friends, relatives to see if they can throw you a much needed life line as you and your husband are going through this challenging time. And it’s not forever!

Wish I could reach through the computer to give you a well needed hug of encouragement. Being a caregiver is an incredibly difficult job. I watched my very capable husband age with the weight of the responsibilities added to his shoulders. As a patient, we’re basically along for the ride, following doctor’s orders to the best of our ability…getting through one day at a time. We can’t worry about anything else but getting to the next day. Our caregivers are the unsung heroes and the pressure is draining! Please don’t hesitate to reach out for help from those around you.
Things do have a way of working out. 🤗