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Preparing for Bone Marrow Transplant: My mind is racing
Bone Marrow Transplant (BMT) & CAR-T Cell Therapy | Last Active: Sep 8 11:10am | Replies (45)Comment receiving replies
Hi Ava, my husband received a stem cell transplant at Mayo in Rochester at end of May. He also had MDS of low to intermediate risk so was denied stem cell transplant for a year until all other helpful therapies were exhausted. The good thing about that was they had a year to find a great donor match! We are from Hawaii so we needed to find lodging for 3+ months. I"m a nurse and had a friend who turned me on to a website called Furnished Finder, meant for traveling nurse lodging. It's created for rentals of a month or longer, though you can do a "housing request" with any type of message. Many of these places are also on AirBNB or similar websites but Furnished finder does not charge all the fees charged by the short term rental sites. We found a great place, significantly cheaper.
I can also say the medical care here in Rochester is amazing and you are likely to have the same level of care in Jacksonville. I'm not gonna lie, the month after chemo was rough, but got through that and now he is doing great! Dave's MDS affected his red cell production only and eventually he was getting blood transfusions every 10 days-2 weeks. Because of our national blood shortage the hemoglobin level at which they were willing to transfuse him became lower and lower over time until he had to be half dead to qualify. And he developed so many antibodies it became almost impossible to find compatible blood. It was no kind of a life!
So grateful for the care and expertise that has given him his life back!
We have been very carefully following all the guidelines and recommendations. So far no complications! Mayo has great info and support....everything you need to know.
The one thing I would do differently as a caregiver is be careful about buying too much food. When we first arrived here I though I would get all prepared with food that Dave likes. I had no idea that his tastes and tolerances would completely change after chemo. All the things he used to like he was either uninterested in or repulsed by! Many things he never really cared for in the past now appeal to him. He is slowly getting his appetite and sense of taste back but even after 2 months it's not the same. I ended up throwing a lot of food away. Now we just go more day to day on buying and preparing food.
I wish you the very best Ava. You got this!
Louise
Replies to "Hi Ava, my husband received a stem cell transplant at Mayo in Rochester at end of..."
louisern,
I was also diagnosed at the low-mid for MDS. I was not denied at the COH, but rather encouraged. I had cancer just 2 years before and a TP53 mutation, along with another genetic mutation factoring in the first cancer. We can never know the outcome for anyone. I think your husband having you was a Godsend. A nurse who is resourceful and flexible. Wasted food aside, your footwork for housing and all you wrote is so helpful to so many. The food is the truth. Cancer gets those taste buds and twists them. Still I never ate a pea or a lima bean with or without chemo!
I am amazed so much at the way our research hospitals are so much the same in the procedure, but so varied in the pre and post op care. I need to check the area by the Mayo clinic as i believe it was built for the care you received. COH is building but is not there yet.
I was given 2 choices, to watch and wait and go into the Be a Match registry. I sat there looking at the results from my bone marrow biopsy, listening to the Doctor and my mind said NOW! I am so grateful.
So grateful to that your husband has rounded the corner. I know at 125 plus days past transplant I am as Lori said about 90% normal! I will never be 100% but every day we live healthier by exercising, eating well and living our daily lives.
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Hi Louise. You’ve been hiding in the background! 😅 I just realized you joined the forum almost a year and a half ago and this is your first time replying. So I wish you a belated welcome.
Congratulations to your husband on his stem cell transplant. Mayo-Rochester is my home away from home where I received my SCT 5 years ago the end of June. As caregiver, both of you have had a dramatic change in your lives the past year or so with the diagnosis of MDS and then, of course, the transplant relocation and all that excitement!
Thank you for sharing his story and your great tips on lodging, food, etc.. All of the information we share about our experiences can go on to help others more than we realize.
You’re homeward bound soon. Life slowly returns to a new rhythm. Your husband’s appetite will return and so will his stamina. It just takes time. As I said, I’m at the 5 year point and for several years now, I feel as though nothing ever happened. My life is 97% back to normal. I’m more aware of the possibility of infection or illnesses. While a SCT gives us a new immune system it will never be 100% as robust as our ‘factory installed model’ so there are precautions to be mindful about. But life feels more meaningful with that second chance!
A few years ago I started a discussion called;
Snapshots of hope: Life on the other side of transplant.
It’s been fun to see stories of members who have had any kind of transplant and how it has changed their lives. We like to get a ‘snapshot’ of something that wouldn’t have been possible if not for the transplant. When you get back to Hawaii it would be fun to see a photo of your husband enjoying a special moment post transplant!
Here’s the link:
https://connect.mayoclinic.org/discussion/snapshots-of-hope-life-on-the-other-side-of-transplant/
Which island do you call home?