Waiting for donor match

@babettevroman, I pray you get your transplant soon, and that everything goes well with you and your daughter's bone marrow extraction procedure. Keep in touch and let us know how things are going. Hugs!

Dear Babette, my heart goes out to you. We are on our last day of conditioning chemo for my husband’s allo transplant. We experienced several delays and anxiety about finding a donor (we were originally told transplant process would begin in April, then in June, then August). A donor was found and the cells are here in Rochester, frozen, but even last week there was concern about some of his tests and more testing.
As one of my mentors told me, a roller coaster of emotion.
Today is Day -2. Transplant will happen Thursday and we are buckling up for whatever that brings.
I wish you every success and that you are able to move forward soon. We only live four hours away but strongly share your feelings about being away from home. We are renting a nice studio apartment here in Rochester. Friends did a fundraiser for us so we could afford it, but delays have been costly in material terms as well as emotionally.
Again best of luck to you. Maybe we will meet sometime! I’m the tall careworn woman with the handsome fellow.
Dorothy

Hi @babettevroman, I wanted to reach out to see where you are on your transplant journey. Is your daughter a match? Were you able to set up a transplant date?

Hi Wendy, I wanted to check in with you to see if your husband is still on track to have his SCT Sept 3. If so, he’s at Day -4 of preconditioning if my mental calendar is correct. How’s he feeling?

Hi Lori, He is doing good so far. He fell a few weeks back and has a fracture on his T10 thoracic spine, so he is in a lot of pain. He is taking oxycodone and he may have to wear a brace. They are trying to get a consult with Ortho, but they are so far out, so he will see them when he is admitted after his transplant. He is weak and tired. He takes naps often, which is good. He had some issues with his port. It may have gotten caught when he took his shirt off. It was bleeding pretty good last night so we went in and they redressed it and used some powder to stop the bleeding. We go in at 7am and 7pm each day for his Lovnox shots. Then chemo at 1pm. He woke up today and said his throat felt sore, so the mouth sores must be starting. I am noticing a change in his memory and attitude. Grumpier and more short if that makes sense. Today starts his longer chemo treatment, so we will see how he is doing after that . His transplant is still on for September 3. He is getting a fresh, international donation, so we don't know for sure what time he will get that. Thanks so much for checking in. Feels good to talk to someone who knows what we are going through.

Hi Wendy. This whole medical odyssey for your husband is quite the adventure with all the twists and turns! His spinal fracture was surely not anticipated. Poor guy! I hope he can get the ortho consult soon. If he needs a brace, they’re actually pretty comfortable and can help minimize the pain of movement.

I cringed about his issues with the port! Yikes, my hand immediately went to the little scar on my chest where my port was! I remember inadvertently tugging on one of the lumens in my sleep. All was well, but it did feel uncomfortable for a day or so and of course I was worried about getting an infection. But the inflammation settled down fairly quickly and that was the only incident. I actually liked having the Hickman port. Saved a lot of hassle with blood draws and such. The only thing that seemed to take the most of my strength every morning for the first few weeks after transplant, was trying to put one of those big Aqua guard covers on before showering. By the time I got that protective plastic stuck I was exhausted!! LOL

I feel sorry for him if mouth sores are already starting.
Make sure you tell his team right away if he’s getting sores in his mouth and throat. There are oral rinses that can help. And if the sores get worse there are other measures the BMT team can take to help him stay comfortable.

I’m counting the days down with you! I know it seems like it’s taken forever to get to this point. And as I tell everyone going through this, the actual infusion of cells is so anticlimactic after all the hype leading up to having the stem cell transplant. But even though the event itself is rather quiet without a great deal of fanfare, it is your husband (and your) opportunity for a second chance of life together. We don’t often get do-overs. So this is quite a gift of life. I wish him smooth sailing through the rest of his chemo and then to Day 0!

If you ever have any questions or concerns, I’m here for you along with so many others of us who have walked the bone marrow transplant path. It really helps to be able to speak with someone who has walked that walk! Sending an air hug!

Hi @babettevroman I couldn’t let another day go by without checking in on you! Have you had any success in finding a donor?