My friend David Levy, a 33 year old man, was given a successful bone marrow transplant several months ago. He was born with an illness called Congenital Dyserythropoietic Anemia, which is very similar to thalassemia (the illness that I have).
Instead of having small flat cells, like someone with thalassemia, his bone marrow produced larger than normal cells that couldn’t properly transport oxygen. And just like someone with thalassemia major, he required bi-weekly transfusions for survival.
David explained his desire to receive a transplant to me on many occasions. I wasn’t in favor of the idea, because I have had several friends pass away while undergoing the procedure.
I was upset when he told me he was going to go through with it, but I knew it was a decision that he was completely sure about.
In fact, his absolute certainty made me feel a bit better about his decision. I think this an important thing to stress. If you’re considering receiving a bone marrow transplant as an adult patient with a long medical history, you have to be absolutely certain that you’re ready to die for it.
According to St. Jude’s Children’s Research Hospital, bone marrow transplant “side effects include graft-vs-host disease (GvHD), graft rejection, bacterial infections, fungal infections, viral infections, gastrointestinal and hepatic complications, neurologic complications, and pulmonary complications.”
Fortunately, David made it out alive. Not only did he live, but he is now cured. Woo-hoo!! David is currently 6 months post-recovery and can safely say that his donor’s healthy marrow has replaced his own. Which really tells us that success is possible, even though he was an older patient who does not have a spleen.
His advice to me, which I think needs to be shared with anyone with a terminal illness like thalassemia, is: “Speak to a doctor and get your facts straight. There’s a lot of old information out there. Speak to someone who is actually doing the work right now and can help you make informed decisions.”
His last hemoglobin test results had him over 13, which is almost normal. According to medicinenet.com, healthy hemoglobin values are as follows:
Adult males: 14 to 18 gm/dL
Adult women: 12 to 16 gm/dL
David is no longer transfusion dependent and no longer needs iron chelation medication (which is required for anyone who receives chronic transfusions). His story is so important to share with others who may be considering having the procedure, but have no idea what to expect.
This video contains a recount of David’s bone marrow transplant experience. Learn what it’s like to search for a donor, receive chemotherapy, radiation, and a marrow transfusion. Also hear what happened after David received the marrow.
- David’s life story (in a nutshell): up to 5:17
- How David found a marrow donor: 5:18
- The type of donor match he received: 6:09
- Final straw that made David commit: 6:47
- How did David know his donor was available: 8:10
- What was the step after deciding he’d go through with it, knowing his marrow match was willing to donate: 9:04
- What happened when David was admitted to the hospital: 9:44
- What is radiation and chemotherapy like: 9:50
- What was his reaction to the radiation: 11:38
- How did chemo get injected: 11:54
- What did chemo feel like: 12:15
- What were the effects of chemo: 12:28
- Was there a point when you thought you would die: 13:14
- What would happen if the bone marrow transplant didn’t work: 14:06
- How many bad days were there after receiving the transplant: 14:28
- When did fevers go away: 15:42
- How was your ferritin level prior to going into treatment: 16:10
- What happened after leaving the hospital: 16:58
- What type of medication did you need post-transplant: 18:05
- Did you need transfusions after the transplant: 18:52
- What his latest hemoglobin was: 19:31
- Whether or not to attempt transplant as a patient with antibodies: 21:31
- What would you say to someone who is thinking about receiving a transplant: 22:37
Please share your experience with bone marrow transplant in the comments below and share this blog post with anyone who is considering having the procedure done on themselves, family member, or friend.
If you would like to get in touch with David to ask him questions about his treatment and recovery, you can contact him via his Facebook page.
Hope this helps you make more informed decisions,
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