10 Yrs Post Transplant

[GoodDay5150]

It seems that not very many people post here these days, but a few of us still do. I am now 10 yrs post transplant after an allo transplant from an unrelated donor who I have never met. I was initially diagnosed w/ PNH in April of 2011, and lucky for me a perfect match was found in short order. I had never heard of PNH at that time, like most people, but I was quickly educated and gained real world experience. Before being diagnosed I thought that I was so tired because of low testosterone, but of course that was not the issue. Other than chronic GVHD and a lot of dr appointments, I have been fortunate to never had any serious issues arise, which of course is a good thing. If you search my user name, you can find my many posts. I hope that those who still visit this site know that others do as well, if that makes sense. Hopefully 2022 will be better for us all than the last 18 mos w/ Covid and all of the other negative world events.


Mario

[Ruth Cuadra]

Hello, Mario!

Congratulations on your transplant anniversary! Although I'm sure you had your ups and downs, it does sound as though your journey has been fairly trouble-free. I too am a survivor of an allo transplant. You can see my history in my signature. Today is Day +8437 for me -- 23 years and going strong!

Here's to many more years of good health for both of us.

Regards,
Ruth

[Matthew42]

I am so happy that you're doing well. That's amazing to hear - just wow!

May you continue to be healthy and happy.

[GoodDay5150]

Ruth and Matt, thank you for the kind words. Ruth, I met you and Neil at the Long Beach event a few yrs ago. We all appreciate the work you both do w/ the AA/MDS foundation. Obviously Covid has disrupted any AA/MDS/PNH public events or meetings, but hopefully that will end soon.

Thanks again


Mario

[Hopeful]

Congratulations, Mario!

Wishing you continued good health in the New Year!

[GoodDay5150]

Hi Hopeful. It looks like you were diag at the usual age as far as PNH goes. I only had PNH and not AA or MDS. My PNH was so severe that i doubt my body would have been able to handle and additional blood disorders. I had no meds or infusions of SOLIRIS b4 my transplant bcse the HMO specialist I had changed his mind abt treating me w/ SOLIRIS b4 my transplant. I did take blood thinners bcse of the risk of blood clots. I will always remember how freaked out a lot of the medical ppl were when they were reviewing my blood tests while going through my diagnosis. I sometimes politely remind older and relatively healthy peeps how fortunate they are bcse there are a lot of younger ppl who have gone through and are still going though serious health issues. Some dr's I have met and spoken to after being transplanted have told me that transplantation for PNH only patients is a risky move, but it's too late now! We all hope that your treatments go well.

Mario

[Matthew42]

I find that MDS is a bit easier to understand overall than aplastic anemia and PNH. Aplastic anemia mystifies me.

My mother has aplastic anemia with a small PNH clone. The hematologist said that PNH and aplastic anemia are very related, even though many people have one or the other without ever getting both. They are both very autoimmune, as opposed to MDS, which is a pre-leukemia condition.

If my mother were to develop PNH, it would be secondary PNH, not primary. The doctor said there is a big difference between primary and secondary PNH. She takes folic acid for the small PNH clone.

They don't like doing bone marrow transplants in general for severe aplastic anemia, unless the patient is very young. The hematologist told my mother that it is a last option for people over 40.

I think that BMT's are more common with people with certain types of MDS.

@Mario: Wishing you all the best. I am so happy for you. I understand that your PNH was very severe, and that getting a BMT was perhaps the best option for you.

With love,
Matthew