so let me get into it....
So yesterday we went into the docs office and got the run down... so basically they found a "low resolution" match from a donor.. which means... just looking at the numbers they found someones bone marrow with 9 out of 10 markers that match mine.. which is excellent... now what's going to happen is they are going to do a "high resolution" test to see if what they saw on the low resolution is actually a match...
the chances of a low resolution match being viable when put through a high resolution test is 40-50%... which is good enough for them to consider continuing with the testing and for having called me in to have a talk. So at the end of the day, they really just called me in
basically to tell me the risks and procedu
re of a transplant:
The pre transplant phase is all about preparing my body for the transplant. They have to do a lot of tests on myself and the donor. What they are looking for is no disease in the donor and they test me to see if I am healthy enough to receive the transplant.. so that means my organs have to be scanned and poked to see if they can even deal with the chemo coming up.
After all the tests... theyll ask the donor for his/her consent and once they receive it theyll check me into the hospital....where ill be for a while....
Once im in the hospital they will give me a cocktail of high does chemothera
py for a week and approx. 2 days of radiation to completely destroy my immune system... this is apparently going to be the roughest chemo ill ever have...its like they have to kill me. Once im totally without bone marrow they'll tranfuse me with the donor marrow...which looks exactly like blood. ( just to explain a little...your bone marrow is where your blood is produced in your body....in your blood you have white blood cells..which are the cells that fight disease...so to get rid of my bone marrow...it means that ill have no way of fighting off infection) anyway to transfuse it they just put it in a bag and they run it through my PICC line ( a PICC is basically a temporary IV that ive had in my arm for the entire treatment...just so they don't have to keep poking me)
Heres a basic run down of a BMT ( bone marrow transplant):
- without a transplant theres a 80-100% chance that ill relapse.....so thats not good
- when i get the transplant the first 21 days are extremely critical.
- i will be susceptible to infections and various diseases... if i get one ill have a 50% chance of dying.
- There is a good chance that ill have organ damage...one in particular is V.O.D. it is basically where the arteries in my liver clot and cause damage...if i get this disease there is a 80% of mortality.. and there is a up to 10% chance of me getting it.
- My lungs can be scarred severely and i may need a transplant if it gets really bad...this can also happen to my kidneys
- after about 3 to 4 weeks.. if my body has accepted the donor marrow ( this is called engraftment) I should be able to leave the hospital... i will be sent home with immuno suppressants to help my body deal with the foreign marrow.. cause i will essentially have 2 different immune systems... mine and the donors.. we are basically trying to find a balance between the 2...
- the first 3 months are important for engraftment...but there are a few complications that can arise if the marrow IS accepted....the major one is graft vs host disease (GVH).. this is when my immune system, which by this time should be mostly the donors, attacks my body.. the intensity can vary from a skin rash to burn blisters on my skin...to complete organ failure... if i get GVH it is treatable with steroids but thats doesnt always work... and there is never really a cut off time for my body....basically i can develop GVH years and years later..
- so the process of getting the transplant means that I will most likely be really weak and end up in a wheel chair for the first 100 days because we are trying to find a balance in my body with the donor system.
there are some cases where after 3 months people gain normal function... but most of the time this whole transplant process will take about a year... so in a year... my life will some what go back to normal...
I have to say hearing that i have to do this for another year was the worst part for me... I broke down in the room when I found that out.. I didn't want to do this for another year....i wanted to just give up... obviously i'm not thinking this now...I was very overwhelmed yesterday... its just a lot to take in ... I'm definitely more confident with everything now...
so we have told the doctors to continue with the testing and they will get back to us in about 4 to 6 weeks with the final verdict on whether we have a match and if everything with the donor is ready to roll.. so for now we wait and pray ...
anyways i hope everything is well with all you guys...please do keep us in your thoughts for a while.. we really need it...thanks :)
and when it comes to this decision whether or not to do the transplant....your input and ideas are very much appreciated.....so far we are leaning towards doing it....just cuz the alternative doest seem to be that great....not so keen on the whole dying thing ha ha
peace
4 comments:
I will look at all these numbers and make a calculation and figure out what is the optimal choice. Obviously the objective is to maximize life span. There is no question about that right? Having two objectives is pretty much like asking me to fly to the moon with a broom, so let me know what you would like the objective to be, this way it would be easier to set up the model.
I don't just study Math for nothing, I study it to save lives, who says you have to be a doctor to do that! HA! :D
I have a couple of relevant questions.
1. Without a transplant, the chances of relapse is 80-100% right? But I need the data for which age group of people this is true for. It matters. They should have this information. Everyone is different, and you are no exception.
2. In regards to getting a disease during the transplant. What are the chances of people getting a disease during that period, they should know this. I mean essentially I'm asking about the success rate of the transplant process. (I.e. the number of people who have done the transplant and have successfully come through OVER the Total number of people who have done this type a transplant)
3. In regards to getting other transplants, like you mentioned a lung transplant. Is this during the treatment phase of the BMT or later on after you are done with the process, if it's necessary of course.
It seems to be there are a lot of variables playing a certain role in the BMT process. Which may seem impossible to fully understand, however, with proper data and prayer, the optimal solution is always within our understanding. I hope me asking these questions doesn't cause any overwhelming feelings. We all want the best for you, and want to contribute to this process in whatever way we can. So if you could kindly get the information I asked for from the doctors, things may become clearer a bit at least statistically.
I love you. You are the Man. :D
In regards to question 1. I essentially want to know what type of people fall in the 20% non-relapsing.
In regards to all these questions, Niyaz, do your own research and leave Nima alone.
Niyaz i know all the answers to your questions...but i want you to read my next blog....i want you to know that its fine to get freaked out...dont worry
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