Waiting for Donor confirmation, for BMT

Hi Carol! First, congratulations with having such a positive response with the Vonjo! That alone is a huge relief! That helps you sail into the BMT process in great shape!
I felt that same sense of calmness and lack of fear heading into my BMT as you’re feeling now. My BMT team at Mayo (and I’m sure these are some of the same players you have) were incredibly reassuring and I was so ready to get this over with! But waiting for the donor process is tedious and does take a level of distraction. My husband’s concern was way deeper than mine. His key issue was concern for my relapsing between the time of the last chemo for AML and the transplant. Me? I wasn’t worried. If my BMT wasn’t worried, I wasn’t worried. But I was eager to get it over with.

I had 2 potential donors as well. I remember it not taking long to find the donors but securing the date with the chosen donor took a little while. For the donor, they may or may not need to take time away from their jobs or obligations. They will be undergoing several days of (daily injections) of a medication to help promote the growth/release of stem cells so there is an adequate amount for your transplant. They may have to travel for those injections and also for harvest day. It can take a day in the facility for drawing the stem cells. The collected cells are then flown directly to Mayo (If this is from Europe, this is dependent on flights) where they’ll be processed in the lab to removed unwanted proteins and then delivered to you via a transfusion that is anywhere from 15 to 20 minutes. Pretty anticlimactic considering the hype leading up to it! LOL

Right now, you could be using this time to plan for your extended stay near the clinic. You’ll be required to be within 30 miles of the clinic for around 100 days. You can be gathering/organizing items to make your ‘home away from home’ comfortable and seamless. My husband made sure to bring his laptop and office supplies like stamps, envelopes, stickies, etc., anything he used on a daily basis as part of his normal routine
For me, I gathered comfy clothing, yoga pants, loose t-shirts (you’ll have a port so access at the neck area makes that easy), underwear, hoodie, slippers, socks, personal hygiene items. Extra pair of glasses, a few art supplies to keep myself busy. Phones, tablets, chargers for them, extension cord was handy for time in the clinic. I bought some collapsible fabric storage hanger that I could hang in a closet for tshirts, pants, supplies. Also a skinny one for shoes and other things I wanted to stash. Since we’d be gone 4 months, I also had a large, flat plastic tote that fit under the bed to keep extra essential supplies for myself. That came in handy.
The logistics may seem complicated but everything falls into place.
Have you found longterm lodging yet?

@carolgk Congratulations on being able to get a bone marrow transplant. Anytime we have a big procedure coming up, no matter our health concerns, it can definitely be energy-sapping. Not to mention the mental and emotional aspects of it all.

I wish you well. I am not eligible for a stem cell transplant, but try to be present in the cheering section for all those who can!
Ginger

@loribmt Thank you , Lori for these reminders. I like your suggestions, they are great tips and much appreciated.
I am essentially finished with packing. We have gone as far as we can go at this time regarding lodging, until we have the "date". A list of preferred locations, as well as back ups for myself and husband/caregiver. The lodging list Mayo provides makes the lodging aspect easier to search.

I read through the many wonderful suggestions/recommendations from past and current BMT patient posts on Connect and have procured what I do not already have on hand. Once I have the Nurses Education apppointment, suspect there may be an item or to to add.
I am ready, was told my "date" could be as early as this coming week (back in late February).

We have spoken with Social Work and they will apply for our preferred lodging as soon as we have a date, so TBD.
We have a rather large number of lodging options with availability in the area surrounding the Mayo Jacksonville Campus. We had been given all of the information lodging options in February. Only waiting on the date!

After pouring through every bit of information from the Mayo recommended sites, I believe we are as ready as I can be.

@gingerw Thank you so much, Ginger. It is a lot to take in, and to deal with. My mental game is not as strong as I thought it was. Know I am not unique. I appreciate your cheer!!!
Please take care and stay as bright as you are!

I was very anxious as we awaited my husband’s allo transplant. The first suitable donor (a 10 of 10 match) was unable to help us. Then we were told another had been found but did not hear from team for weeks. I contacted the National Marrow Donor Program (they couldn’t give me specifics but assured me the process was in motion). I was on the phone to the Mayo team with alarming frequency.
I even spoke to a very kind person at the Office of Patient Experience. They helped clear up my concerns about communication.
The process of finding a donor started in February and he needed several cycles of chemo to bring down cancer cells; transplant happened in August. As difficult as it all was, we are grateful for every single day.
Best of luck to you.

Thank you for your reply!
I appreciate you sharing your waiting experience. That length of time waiting must have been rough in every way.

I hope all is going well with your husband.

@carolgk
I had my 2-yr follow-up today for my BMT. My Dr. loved that all my numbers are good. No concerns for the last 6 months. In 3 months, I get my 1st of two measles/rubella/mumps live vaccinations. I asked him why at 2 years my blood had not changed from my A+ to my donors 0.
He said no worries. If all my blood numbers, all of them are very good, my system is working. He said if that changed, he would have the next step ready.
I also said I wonder if I would have leukemia today if I had not had the BMT. He said yes, you would. No hesitation. Again, I thought to myself, i never thought it was that bad.
I was diagnosed Oct 2, 2023, by November I had a number of matches. My Dr said go on your vacation when I said I had one planned over the holidays. Come January the balls started to roll.
I had to find a caregiver. Two brothers and a sister local were not able to help. Two took care of my cats, sadly one died during my first 100 days. My friend gave up her bedroom to me. She slept on a bed she had for guests. She had a roommate I knew, who I found out later, was not so interested in helping "care" for me. My friend was supportive in all ways a caregiver was supposed to. I had few troubles after my 26 days in the hospital.
I had all the testing in late February/through March. There was a lot of paperwork to complete and my caregivers needed to be met and talked to. I was told my donor would be ready in late March.
Here on connect Lori was here to tell m about all of it. Once my transplant team gave me the paperwork, I was comfortable. I never agonized. All the tests were set up and I went. I thought for sure i would fail the breathing test. I did not. I was stable for every test.
Early April, the process began.

@katgob Hooray for your great 2 year appointment!!! Wonderful news. I am happy for you.
Your friend sounds like a gem, one to be treasured. You sound like a strong lady yourself. Im grateful to know your story, reading it "boosts" my hope. Thank you so much for sharing your journey.

Im impatient to begin the BMT process, now that I know it must happen. I want my life back, have not felt like myself in almost 3 years. It did not help that the many Specialists dismissed my symptoms, made me doubt myself and sanity for far too long.

Prior to this, I had been a very active person. Now life has been constantly interrupted by symptoms, the 2 1/2+ years of unpredictable intense itching 6-10+ hours a day has made it difficult to do much of anything, Bone pain take me out at times, the awful fatigue, weakness, spleen discomfort. Poor nights sleep from heavy sweats. Losing 50lbs in 6 months. Im a "foodie" who no longer enjoys food! I have never experienced exhaustion like this, even after hiking 20 miles in a day!
While many of these symptoms have improved quite a lot since on Vonjo, I do still have surges. The intense itching never went away but I do get occasional breaks.

Knowing it will likely be atleast a year after the BMT before I feel somewhat normal again, I am so ready to get on with it!!!

I so appreciate you taking the time to share your experience.
I wish you only the best of everything in your new life!

Congratulations! This is an exciting and anxious time for you as you wait for a firm date for your transplant. When I talked to my donor about his donation experience, he said that as a 21 year old college student he had some things that needed to fall into place before he could take time off to do the medication that forces stem cells into the bloodstream and then for the actual donation day.

As I waited for doctors to schedule my transplant date, I was busy doing all the preliminary testing. One of the scans revealed that I had some spots on my liver. I needed a biopsy and then wait for the biopsy results before my insurance would approve to proceed with the transplant. So, my mind was more occupied with worries about not qualifying for the transplant.

In your case, I recommend journaling about your experience. Since the weather is getting nice, maybe you can enjoy day trips to your favorite places. I also had a stack of books to read. If you don’t feel like going reading, may be you can listen to audio books on Libby or Hoopla.

Wishing you all the best with your transplant!

@alive You are so kind with your suggestions! Thank you very much.

I hope to be able to thank my Donor at some point. It is much to deal with on the Donors part. I am so appreciative of their sacrafice.

You bring up excellent distractions , some of which I already do - especially reading. Now that I have arranged all that I can, "preparing" as I have from early on has left me with time on my hands. I have always been a "productive" sort of person who loves the outdoors.

It must have been nerve wracking to get the test results. That worry must have been all consuming. Im sorry to hear you went through that. Yes, that would be a large distraction.
I look forward to the pre-transplant testing to keep me busy! I do not have big concerns about tests results (crossing fingers) as my only comorbidity is Rheumatoid Arthritis and otherwise healthy. Thankful I do not deal with diabetes, blood pressure, heart, or breathing problems.
Ive had all of the tests atleast once over the past 2-1/2 years trying to figure out what the heck was wrong. All systems were great reports (crossing toes) with the exception of the last 3 Bone Marrow Biopsy's.

Last night, I realized that frustration plays a part in all this. Not having energy now even though I feel much better than I did. Any real exertion and I become out of breath. This winter did a number on our gardens. I adore planting. I tried, quickly became exhausted, even in the shade.
Recently, I have lightheaded moments. The Florida heat and humidity often sets off the itching so that limits my options.

Just yesterday, after reviewing the diet limitations after the BMT, I suggested to my husband/caregiver that I would like to eat out more often (we don't eat out much) to enjoy foods I will not be able to enjoy during recovery. Lucky me, he agreed!

Knowing others have struggled on some level with the waiting? It matters.
I appreciate all of your suggestions and will try everything for distraction.
Thank you for your post. A
All of the best to you!