Hi! Oh gosh, I know you have a tough decision ahead of you. It’s easy to drag your heals while you’re feeling fine. But I can tell you from experience, you’ll want to have this done before you morph into AML. It would be much easier now that you’re relatively healthy and not having the chemotherapy required for the AML. Right now you feel good, your condition is stable and you’re strong. Your lupus is quiet, you’d have time to plan your next steps and get things lined up for the transplant.

I realize you’re taking Jakafi but that’s different than the rounds of chemo used to reduced the cancer cells in the blood and bone marrow once you have AML. That weakens your body and your immune system much more than Jakafi.

I also want to point this out…the Allogenic transplant, using donor cells may also cure your lupus. That’s an auto immune disease and you will be getting a new immune system! Whatever allergies you’ve had, autoimmune diseases, etc. may disappear.

Depending on the protocol of your clinic you’ll be expected to have a caregiver 24/7 for several months and to live near the clinic for 100 days. But some clinics have different limits so that’s just from my experience.

My suggestion is to not go online to search for stories or information about Stem Cell Transplants. This will do nothing but make you anxious. When you make the decision to go ahead, your transplant team will be your new family. You need to learn to trust them and to let them be your guide. You’ll have educational classes to give you all the details.
The rest of the info you can get right here. I promise to answer any and all questions honestly. When you’re ready, I also have a ton of information about what to pack for an extended stay away from home, what to expect during transplant and what to do when you go home. Sanitation will be a huge part of your life. There are several other members here who have gone through this procedure as well. We have your back…
Do you live near a transplant center?

Good morning. I am an 11 year survivor of AML after stem cell transplant lift of life from my sister. I remember the uncertainty that set my mind racing and my heart into fear when I was diagnosed. I am a woman of faith, so I will offer this thought to hold onto as you journey forward. We all have God’s phone number, when we need help. It is found in Jeremiah 33.3. “Call to me and I will answer you and tell you great and unreachable things you do not know.” Please know that we are here to support you.