<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>gracebazzle</b></i>
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<br />Just looking for advice from some people who've had a transplant....
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<br />1. How awesome does it feel once you are all healed and mobile again???
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<br />2. What are the biggest problems you've had
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<br />3. Are you happy you had a transplant, what is the best thing about having had one?
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<br />I'm just starting to talk with my docs about transplant, and my older brother actually underwent a double lung transplant in 2002 and never woke up, freak accident, i know. but it puts obvious stress and doubts in my mind about the procedure. Just looking for advice and encouraging words!! thanks!</end quote>
<br />Hey Grace...
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<br />1. The feeling is indescribable. It was something I never experienced before. Just imagine life with nothing slowing you down. And then all of a sudden being able to "out do" your friends while they were used to having to walk a snail's pace during your attempts to keep up.
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<br />2. I have some stenosis, narrowing of my airway where my new lungs were sewn in, due to scar tissue. This issue caused some wheezing which I was already used to anyway. In the end I had a stint placed and it's been fine since then which was probably about 10 yrs ago.
<br />Also back in 2002 or so I did have a touch of rejection. I was given IV doses of medication (I don't remember what it was) over the course of a few months which basically knocked my whole immune system out ("resetting it"). The medication seemed to work because my pft's declined fairly quickly beforehand however they did plateau at a time which breathing was still comfortable. I did lose some lung function so I get shorter of breath during exertion than I did before this small bump in the road. However this hasn't slowed me down.
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<br />3. Not only happy, absolutely ecstatic that I had my Tx. Sure most CF patients have been referred to as skin and bones. Without the Tx I would be all bones lying in a casket.
<br />The best thing about it? OH you mean besides being able to do anything that I want to, within reason of course? <img src="i/expressions/face-icon-small-wink.gif" border="0"> How about just being able to live without having the CF leashes tying me down and feeling absolutely fine while doing so.
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<br />In regards to your brother, I can't imagine how much that must suck. I am also an oldest brother with a younger brother living with CF also. If or when the time comes for him to make this decision I would tell him the same thing... GO FOR IT!
<br />In your case take something positive away from your brothers situation. Your brother was courageous and decided to go with it. I'm guessing that if he wouldn't have taken the risk he would have not lived much longer anyway (I don't call having to live tied up by oxygen and treatments 24/7 "living life"). You should be happy that he had the courage to do so. I am sure that you looked up to him. Follow his lead if the path takes you in that direction. He would want you to go for it as well. There is no sense in living tied up if the end is inevitable and there is still an option to live with a great quality of life. <img src="i/expressions/face-icon-small-happy.gif" border="0">
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<br />-edit- forgot to answer the initial question:
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<br />Oh and to answer the initial question about pain.
<br />Sure it might seem terrible while you are going through it... just like everything in life (ex. losing a loved one, having to put your dog down, breaking up with a loved one).
<br />However as time passes the less and less of the pain you remember because it's been so long and because it doesn't matter anymore. Most doc's try their best to keep patients comfortable anyway. The drugs also tend to have an amnesiac affect causing you to forget the worst.
