need your help

[Janire]

Hi everyone.
Yesterday I went to receive my transfusion like every three weeks since two years ago and I receive the new I didnt think it would arrive ...I possibly have a donor.
After five years fighting with aplastic anemia, and a lot of transfusions....i am very scared. Maybe one year ago I was psicologically prepared for transplant but now....im scared for the amount od transfusions and the three atgs I had...because I read is not good for the trasplant success and because I read and know a lot of histories about people who have passed away with the trasplant and I dont know what to do....I want to run away, i geel in panic....I though that when I received this new I would be ready and happy.Maybe I am used to life like that after five years. My levels are very low, i need ttansfusions every three weeks and i cant do a lot of things, but im alive, stable and i dont have complications.

Please, help me. I need testimonies of people wit a long aplastic anemia history and a lot pf yransfusion who had success in their yrasplants. I need to know where you find your strengh and you bravery to pass all the progress because I see people go to the trasplant happy and strong with more hope than fear....and i cant be like that.

[BrianFlaigmore]

When I had my transplant I had only had been transfusion dependent for seven months, but I was receiving both red and platelets two or more times per week. I have also not had as much ATG as you pre transplant but I did have hATG four months before. So I was not in the exact same place as you and I can tell you that the transplant is intimidating. With that being said I am half a year post-transplant and life is beautiful. I have even began playing ice hockey and rock climbing again, something I could never even have imagined while my platelets were low. My doctor has given me a clean bill of health and I am of off 90% of my meds. I know that this is not always the outcome, but it is the point of a transplant. It's a chance at a full life. It's a scary ride, but it's paradoxically a beautiful journey of self-discovery. I would like to encourage you at this time that this is the best possible option. If you ever have any questions please feel free to ask.

Cuando tuve mi trasplante tuve sólo habÃ*a sido una transfusión dependiente durante siete meses, pero que estaba recibiendo roja y plaquetas dos o más veces por semana. También no he tenido tanta ATG que pre trasplante, pero tenÃ*an hATG cuatro meses antes. AsÃ* que no estaba en el mismo lugar exacto como usted y puedo decirles que el trasplante es intimidante. Con dicho esto soy mitad post-trasplante de un año y la vida es bella. Han incluso comenzó a jugar al hockey sobre hielo y escalada de nuevo, algo que nunca hubiera imaginado mientras mis plaquetas estaban bajas. Mi médico me ha dado un buen estado de salud y me voy de 90% de mis medicinas. Sé que esto no es siempre el resultado, pero es el punto de un trasplante. Es una oportunidad de una vida plena. Es un viaje aterrador, pero paradójicamente es un hermoso viaje de autodescubrimiento. Me gustarÃ*a animarte en este momento que esta es la mejor opción posible. Si tiene cualquier pregunta por favor no dude en preguntar.

Paz y alegrÃ*a, Brian

[evansmom]

Beautiful reply Brian.

Hi Janire,
It sounds to me like you are already a tough warrior, having had all the treatments and transfusions you have had yet still being able to get on with life. And without complications!

Unfortunately, there is no right or wrong answer. You have to do what is best for you. A crystal ball would be so useful right about now, but alas, none exists.

It is true that transplant can be a long hard road to come back on and yes, the reality is that not every one makes it but there are a great many more that come back stronger than ever, both physically and spiritually. There are many who can attest that the challenges of recovery with many a set back was still so worth the fight years later, once they have finally stabilized.

Provided the potential donor is indeed a very good match (10/10) and is able and willing to donate, these are the things I would consider if I were you:

-It appears that you are currently relying on transfusions to keep you alive as it is, this routine may or may not continue to sustain you satisfactorily.
-Your history with aplastic anemia indicates that you will likely continue to need ATG/cyclosporin treatements for a continuing recurrance of the disease.
-You have shown a good tolerance to these strong immunosuppressive treatments in the past
-You are still relatively young.

You likely have significant iron overload, which can contribute to complications during transplant with your heart and liver, but your BMT specialists will be aware of this and take extra precautions to protect these organs such as using a non-myeloablative approach, or adding special medications for protection such as ursodiol, etc.

For me, the matter realy rests on the quality of donor match.
These are just my opinions, but I hope it helps.

Best wishes,

[dpmeeks]

I was like you, I just had my BMT 3 days ago and yes It can be overwhelming but, keep your eyes on the prize of good health. Just stay positive and put it in gods hands and he will take that burden of worry off of you so you can focus on him and getting better.

[Neil Cuadra]

Janire,

If you'll have a match for transplant then you'll need to stay healthy enough for the process to begin. Your counts don't have to be perfectly normal, just high enough to keep you out of danger, and it can't be helped if you need transfusions.

Remember that a transplant is the one real cure for aplastic anemia. You can't change the past but when you put all of your focus on a successful transplant you are headed directly toward the ultimate prize: putting the disease behind you and getting your life back. The doctors can tell you that no option is risk-free, but neither is driving a car or walking across the street.

Every transplant patient has a history that's less than perfect. Otherwise every patient would be 18 years old, have an identical twin sibling, never have had a transfusion, and have been diagnosed the previous day! With a good match for a transplant, you've got more going for you than people who are older, have more advanced diseases, and/or other health issues. I think you're going to do well.

[squirrellypoo]

Brian's not the only one to have their life turned around by a transplant - before my transplant in 2009 I was having four transfusions every week just to stay alive (2 red and 2 platelets).

3.5 years later, I've gotten married, run a marathon, and am healthier now than I've ever been in my life. A transplant is a gamble, and none of us know what the future will hold, but you have to keep reminding yourself of the good that could come of it, as well as the bad that could happen.

[Cam]

I agree I think it is worth the gamble. I had MDS but had to start taking transfusions once a week and all kinds of tests that seemed to never end. I had an allogenic transplant on 12/6/12 and made it home from Christmas. I will not tell you it was easy and it is not over but it is doable and it is a cure. I decided the disease would not rule or take over my life or my family's. I think you need to make the decision but I think you should do it.

[Janire]

Thank you for your responses. I dont know nothing about the donor yet. I have to wait at least two weeks and i am freaking out. I cant think about nothing more and all the plans I have....is like I had a impossible wall to pass before make them. I am nervous and I cant sleep....i cant have a positive perspective, is impossible.
Maybe one year ago the situation had been different but now I feel I am late for the yrasplant with a lpt of treatments and transfusions in my body. I am afraid of graft failure or gvhd. Some doctors tell trasfusions pretrasplant are not important but i know it is....
Before knowing I possibly have a donor I wanted to treat the disease in a natural way. in one week I will be moving in a new house in the country and I wanted to change my nutrition and work wirgh alternative teraphies and meditation....maybe I am not realistic but I think already that this way can be the cure and without less risks than trasplant. I was reading Marla's blog and it was encouraging.
But now the yrasplant is possible and insyead of being positive and visualize my cure I have a lpt of doubts about what way choose...

[Neil Cuadra]

Janire,

It's worth pointing out is that your feelings are normal. Most of us worry, second-guess our tentative decisions, or have trouble making up our minds in the first place. When you have such a big decision to make about your life, you can't rely on "the obvious" because it's not obvious at all. That's why we all try to get facts to help us make rational choices.

You don't have to make choices like this alone. You can talk to the doctor, get a recommendation, then get a second opinion from another doctor. (My wife and I did that, and then we got a third opinion from a third doctor when we were still on the fence.) And be sure to talk to family and friends around you too. They will listen to you and nobody will try to help you more than the people you are closest to.