transplant ????s

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sarabeth87

New member
Ok, i'm pretty sure that i'm no where near a transplant (i am about to be 19 and have never been in the hospital or on IVs) , but WHEN and IF i ever do need one, what are the reqirements. I have MRSA and Pseudo A. so i was just wondering if there are any restrictions with that and how do they decide if you need one. just curious
 
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Jane

Digital opinion leader
There's a ton of info on the transplant section. I had asked a similar question a while back.

Good luck.
 
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IG

Guest
"requirements" probably the only thing I can think of for this one is that you can't wait too long to get listed. Or at least that's what they told me back when the allocation program was different. They've revised how you're listed/when you get it back in 04? Oh, another thing is that you must be treating your CF. If you haven't been doing any treatments, doing IV's, or taking pills that they've prescribed then you're probably not going to get listed, since that shows them that you won't be compliant after tx with the medications, doctors appts., physical therapy, etc.

I know that I had pseudo and MRSA pre-tx, so it depends on what clinic you go to I suppose. I've heard that some don't tx b. cepacia patients.

As for how they decide? Your CF doc should take an overall view of your life/health. If you're progressively declining in PFTs/ quality of life despite the fact that you are taking good care of yourself, they'll most likely refer you to a tx clinic/doctor with a recommendation for an evaluation or a preliminary appt.

bout all I can think of right now, though as Jane suggests go through the tx section, also do search for 'transplant' on this site, should bring up some results.
 
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IG

Guest
What decides ultimately who qualifies is not personal opinion, but a number of factors.

before you're listed you go through a heck of a lot of tests. Probably every king of 'ologist out there. Including a psychologist, which I'm sure is one of the major people in the decision process as for deciding. Another one is if you have the funds to pay for it. As far as I recall they had to make sure medicaid would pay for it before actually going through with the transplant (I don't remember if it prevented me from being listed or not). The test decides if you're physically capable of handing transplantation, the psychologist decides if you're mentally capable of handling transplantation, and with all of those factors positive the transplant team has very little incentive to tell you no for the transplant. From what I know it's the team that makes the decision (doctors, nurses, etc) not just one person. It's people that you've been in contact with, not some higher up that doesn't know you either.

hope that answers it.
 
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CJTexas71

New member
For me, the standard was you had to have less than 2 years to live,
by the way your lungs were functioning, and the probability of
recovering. They test everything you can imagine on your body, that
is for sure. Ultimately I was on the list for 2 years and made a
personal choice to remove myself.
 
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coltsfan715

New member
I actually just asked my doc about this at my last appointment because I didn't want to be surprised if/when it was brought up and I wanted to be sure that when the time came that I was mentally prepared - I don't like being surprised with those things.

I asked how bad your PFTs and things have to be before they suggest it. His response was that when your PFTs start to reach the 20% range they usually start to talk about it. Then factors come into play as to what center you should go to if you choose to go the transplant route - meaning insurance, closeness (proximity wise) to the center and so on.

I also asked if there were any bacteria that excluded you from being eligible for transplant - I culture MRSA and I think 2 diff types of Psuedo. He told me that in some centers there are time when they will not transplant if you culture certain bacterias, but that neither MRSA or Psuedo that I grow would exclude me from being eligible.

Then he went into other things that were important as far as transplant such as nutrition, weight med compliance and so on.

Hope that is helpful.

Lindsey
 
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IG

Guest
20% range?

That seems a little severe, when I was listed the 'norm' (I'm not sure if this is official or not) was that you had to be at 32% or lower, or declining progressively (but I think the last one was at a tx doctors recommendation). I know before tx I was hitting 23% and (later after tx I was told) I had about an estimated 2 weeks before I kicked the bucket. 'twas lovely to hear so afterwards, but i'm stubborn.
 
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IG

Guest
Ah, ok, sounds better now.. <img src="i/expressions/face-icon-small-smile.gif" border="0"> Thanks Lindsey.
 
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EnergyGal

New member
It is based upon quality of life. If someone with CF is in the high nineties and suddenly they drop into their forties they are going to feel it more than a person who has been sitting in their fifties and drops into their thirties. It all depends on how one adapts to change and to see if they can live and function at a lower lung function. I am sure if you are going to to a CF accredited center when the time comes when they see you approaching transplantable numbers they will suggest you go for a transplant evaluation at a qualified Tx center. Then the tx center decides when you need the transplant according to UNOS guidelines. So there is no specific person but a governing body who ranks your scores on the transplant waiting list.
 
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Joblazer86

New member
well doctors and nurses have been telling me for about 3 yrs. now that i should be evaluated. as everyone has said yes you go through so many tests it isnt even funny. then after all the tests are done you go through consults..... mental, nerves, heart, etc. by the time they r done they know more about u then u do urself. usually they start talking to u when u hit the 30% mark.... as far as how long u can live below 30% it depends on how well ur body adapts and how active u stay. i've been chillin at 18% to 20% the last two yrs and only use oxygen at night or when i workout *knock on wood*. some ppl when they hit the 20's are on oxygen 24/7. so they can't really tell how ur going to respond but that 30% is the time to start the process. as candice said the list is no longer first come first serve.... it is done by a point system now. also if u have been exposed to two viruses already u are able to get ur lungs quicker, epstein-barr and cmv, b/c it is harder to find lungs that haven't been exposed to these viruses. oh and of course nutrition is very big so alot goes into it. if u would like to email me my email address is adrenalineo7@aol.com the o is the letter o and not the # zero.
 
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kybert

New member
candice and lyndsey, in perth [i guess its for the rest of aust too] it is 20% [not 20% range either]. pretty disappointing eh. alot of patients die before they get their transplants and alot dont do well afterwards because they are transplanted too late. throw that in with the fact that we use a different fev1 scale [one that reads better than you actually are] and its a nightmare.
 
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IG

Guest
Ew. That certainly doesn't sound good kylie... thanks for clarifying though.
 
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coltsfan715

New member
That sure does sound awful Kylie. I hate that. I sometimes wish they could just have universal standards when it comes to health stuff. Keep it all the same that way it would be easier to compare info from different places - not just within the same country.

Lindsey
 
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Robertson

New member
When I was told that I needed a Transplant the doctor said that I only had maybe a year left and to be placed on the list I would have to gain body fat. I had only 8% body fat and needed at least 15% so they placed a G-Tube. My PFTs were 18%.
I was lucky, it took 8 months to get listed and I only had to wait 3 mo. to get Trasplanted. and that was 3 years ago. hurrey for me.
 
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