https://pubmed.ncbi.nlm.nih.gov/34255899/
- Age: 26
- Sex: Male
- Height: 6'2"
- Weight: ~145lbs
- Race: Caucasian
- Duration of complaint: 2 years for red cell aplasia, 8 years for CVID
- Location (Geographic and on body):Denver, CO
- Any existing relevant medical issues (if any): Red Cell Aplasia, CVID, Hx of Gastric Cancer 1aN0M0 multiple foci but the primary tumor was <1.0cm
- Current medications (if any): Hizentra (IVIG) 10mg Bi-Weekly, and Cyclosporine; currently 100mg BID.
To be brief I was diagnosed with CVID when I was 18, had a total gastrectomy at age 24 which should be in my past since they caught the gastric cancer super early and my risk of recurrence is extremely low, and most recently I've acquired red cell aplasia that relapses whenever I taper off of cyclosporine. I've also had chronic IBD type histology and symptoms since about 1-2 years after being diagnosed with CVID. Basically I feel that my only chance of not feeling like a ticking time bomb and having a normal life is a bone marrow transplant. Yes I know that there are a ton of risks (especially lethal ones) involved but I'm kind of in a risk it to get the biscuit scenario now and would like to pursue more aggressive options. So if you have any sites/research centers/clinical trials around the country that you think would be a good fit I'd love to hear them. I also have my degree in Physical Therapy and my undergrad was in Anatomy & Physiology/Biochemistry so feel free to be technical in your responses. Thanks in advance for all of your help everyone!
My dad is having his procedure done next week pending how Covid could mess up the timing. He’s in his 70s and has been undergoing therapy for a few months now and has a pretty good attitude about the situation but I’m worried how that may change during the BMT
For those that had this procedure, is there anything that you found helpful and motivational in away that came from a loved one/ friend/rando? Particularly for during the really hard days
This post is mod approved.
Are you registered as a bone marrow donor? In July, we found out our 7 year old daughter has a super rare immunodeficiency called Dock8. The cure for the condition is a bone marrow transplant. Unfortunately, there is not a perfect match in the registry. Our doctor explained that matches are based on ethnicity. My husband and I are a mix of Scottish, English, Irish, Norwegian and German. We live in the US and are mix of many of the European settlers. The registries are linked world wide, so we are hoping to find a perfect match to her.
Please take the time to order a cheek swab kit. The likelihood of finding a perfect match is 1 in a million, but that is better odds than her having this condition so we are hopeful to find the perfect match.
Here is the US registry https://my.bethematch.org
List of other registries that work with Be the Match in the US. https://bethematch.org/about-us/global-transplant-network/cooperative-registries/
Thanks for reading. Honestly, it has been a really hard few months. We find out my daughter has a genetic immunodeficiency that only 250 people in the world have. The cure is a bone marrow transplant. We have her older sister tested and she isn’t a full match. They then check the registry and there isn’t a full match there either. My heart explodes. The week before I start teaching again my husband is fired because he was a victim in a scam at work. He was right about to become assistant manager. So, sometimes I feel cursed. When we find the match, hopefully the curse is broken.
How effective are they? Is it really worth the risk and the money? Has anyone successfully gotten cured / know anyone who has from a stem cell transplant? Thinking it might be the best option for my partner who has been very sick the past few months. However he is 22, is this too old for a successful transplant? He has an older brother who doesn’t have sickle cell and I’m sure he would be a match. Would anyone recommend this? I feel like he can’t go much longer like this. He says when he’s in a crisis the pain is so bad he would rather die than experience the pain any longer. If this is the case I feel like maybe it’s best to try the transplant despite the risks.
Are you registered as a bone marrow donor?
In July, we found out our 7 year old daughter has a super rare immunodeficiency called Dock8 deficiency. The cure for the condition is a bone marrow transplant. Unfortunately, there is not a perfect match in the registry. Our doctor explained that matches are based on ancestry. My husband and I are a mix of Scottish, English, Irish, Swedish and German. We live in the US and are mix of many of the European settlers. The registries are linked world wide, so we are hoping to find a perfect match to her.
Please take the time to order a cheek swab kit. The likelihood of finding a perfect match is 1 in a million, but that is better odds than her having this condition so we are hopeful to find the perfect match.
Here is the US registry https://my.bethematch.org
If you are already registered, here is the page to make sure your contact information is up to date-
https://bethematch.org/update-your-contact-information/
List of other registries that work with Be the Match outside the US.
https://bethematch.org/about-us/global-transplant-network/cooperative-registries/
Most unrelated donor do not donate bone marrow but rather Peripheral blood stem cells. You are awake the whole time and the process is similar to dialysis. Here is some information on it.
https://bethematch.org/support-the-cause/donate-bone-marrow/donation-process/donating-pbsc/
If you do get chosen to donate bone marrow the process is different from tv. They do not go in your spine, but rather your hip. You would be under anesthesia, but the procedure is generally out patient.
Remember though, you are saving a life. You are the one person that is the best match to help save a person’s life.
Are you registered as a bone marrow donor? In July, we found out our 7 year old daughter has a super rare immunodeficiency called Dock8 deficiency. The cure for the condition is a bone marrow transplant. Unfortunately, there is not a perfect match in the registry. Our doctor explained that matches are based on ancestry. My husband and I are a mix of Scottish, English, Irish, Swedish and German. We live in the US and are mix of many of the European settlers. The registries are linked world wide, so we are hoping to find a perfect match to her.
Please take the time to order a cheek swab kit. The likelihood of finding a perfect match is 1 in a million, but that is better odds than her having this condition so we are hopeful to find the perfect match.
Here is the US registry https://my.bethematch.org
If you are already registered, here is the page to make sure your contact information is up to date-
https://bethematch.org/update-your-contact-information/
List of other registries that work with Be the Match outside the US.
https://bethematch.org/about-us/global-transplant-network/cooperative-registries/
Edit 2: a link
Edit: Most unrelated donor do not donate bone marrow but rather Peripheral blood stem cells. You are awake the whole time and the process is similar to dialysis. Here is some information on it.
https://bethematch.org/support-the-cause/donate-bone-marrow/donation-process/donating-pbsc/
If you do get chosen to donate bone marrow the process is different from tv. They do not go in your spine, but rather your hip. You would be under anesthesia, but is generally out patient.
Remember though, you are saving a life. You are the one person that is the best match to help save a person’s life.
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