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anonymous
06-21-2003, 01:13 AM
Would like to hear from recipients or those on the waiting list. What does it take to qualify? How much did you have to pay? How long did you wait? What 'bugs' do you have? What do you have to do for maintenance? Are you glad you did? Where did you have it done? What is your life like now?

anonymous
06-21-2003, 01:38 AM
This is going to sound more cynical than I intend, but here goes... You're not going to hear from anyone who's not happy with their decision to go with a transplant (after the fact) simply because by virtue of any response at all, they had a decent outcome. In other words, unless you've tuned in to "Crossing Over", folks who had a less than desirable outcome CAN'T tell you anything- they didn't make it. If you're the same person who posted about the oxygen, than I can only tell you that it's theoretically possible to make some improvements, but by and large lung damage is permanent. I've been on 02 since 9/02 (3 liters per minute) and have only managed to maintain my current status. I was able to get well enough to get off of it, but only for 4- 6 hours a day... The whole subject of transplants tends to be a hot button issue- but only for the folks who've been through it (and survived) who regard others who may not choose a tranplant as "giving up on life." This sickens me, as it is those who've made it through successfully that think they can judge someone who believes that perhaps they've simply had enough- and that's acknowledging a less than stellar success rate for survival. I feel for you, it's not an easy decision to make- and I've been wading in the waters of transplant for quite awhile now. Take care and good luck- -Wes

anonymous
06-21-2003, 10:22 AM
I am 6 months post tx, I know the before and the after.The good and the bad.I have just done a speech today about my tx at a function.I would be happy to answer any questions that you may have, Icould fill the whole board up with my pre tx and my post Tx experiences.My speech outlines a lot but its 9 pages long.I live in Australia so of course I had it done here.It took me 4 years to get on the list, I kept having test come back that didnt meet the criteria. I was on O2 for 3 years and almost on IV continuously. Without a Tx I wasnt expected tomake the winter.When I finally got listed things were pretty grim, but I was lucky and got done in 3 months.Am I glad I did it? I'm glad I had a good outcome, and I'm here to help others.What is my life like now? Far better than I ever expected, my lung function was <13% and now its102%.....I respect everyones decision whether they want to try for tx or if its just not for them.There's no way I seeit as in giving up or not wanting to fight. It's the hardest desion you will ever make and it comes with no guaretees.So if there is anything I can help either of you with, feel free to pick my brains.If I can answer I will do so honestly.Tracy

anonymous
06-23-2003, 06:51 AM
I reeived my Tx Feb.3,03. And despite the pneoumonia an I had one collpsed {due to a doc.s lack of knOwledge on pulling chest tube} I would still have another one if need be.To me it is well worth it w/ no excuses not to.As far as to qualify I believe it varies from Tx to Tx center so i won't say any more on that.The avg wait I here in the northern states is 1yr r better.Here in the south{La.} any where from a few months to a year.I received mine in about 1 1/2 months.I was blessed.As for as what bugs;if you have pseudomonis {sp} in your sinuses it will still be there;however most docs will treat it to prevent it from spreading to your lungs.For maintenance there are the pills you have to take for anti-rejection and other pills like extra vit. if your doc. deems them necc.Also ther is the Incentive spirometer which is an easy exc. for the lungs.Involves inhaling through a pipe to see how much air you can pull in.Daily maintenancerecords of blood pressure and temp. checked like upon arising out of bed.I had mine done @ Oschners in Meterai/jefferson....thats just outside New Orleans,La.and my life now is excellent

anonymous
06-23-2003, 06:09 PM
"...To me it is well worth it w/ no excuses not to..."This is exactly the kind of judgementality I was talking about...

anonymous
06-23-2003, 08:07 PM
I actually agree with that statement, and I've had a tx,it's not a walk in the park, in actual fact you trade one set of problems for a whole new set.I sometimes feel that tx patients aren't entirely honest. Whether they dont want to scare people,I'm not sure. I know I tell it how it is straight up. I know when I went for my tx I too only ever heard the good stories, and to me its just not reality.In order to be prepared you need to know it all, the good side of tx and the bad.It may be scary, but tx is a scary thing to go for. It's a damn hard road to travel.Read as much as you can and speak to as many tx people as you can, if you go into thinking that everythings gunna be dandy afterwards, you hit earth with a thump. And thats not to say things wont be good after, you just need to be honest to yourself and have your eyes open.

anonymous
06-24-2003, 09:47 AM
The comments are certainly interesting about lung transplant. I guess just like people, they differ.Lung transplant is a tough thing to decide to do. Also deciding not to have a lung transplant is a hard thing to do. I respect both decisions and think very strong people make these decisions and they deserve all the credit in the world no matter what they choose.Most post lung tx folks will say "I would do it again in a minute". I am sure there are some that will say "never again". I am one of those that will say "I would do it again". I was told recently by someone that they hear me say that often, and told me to "shut up" - as I had an easy time of it and no wonder I say that. Well...... that is not the story really. I did not have an easy lead up to tx, nor was my post tx experience without blemishes.My feeling is that when I talk with someone and sort of get an idea of what they do and don't want to hear, then I can share my experience to fit their needs. I do this because pre tx I was petrified of hearing any bad stories. Heck, I am human, I live in this world. I know BAD things happen. No one needs to tell me that. I can assume that side. But I wanted to hear the good stuff. That was what I thirsted for. So now, being post lung tx, I gage people to see their needs in the story of my tx experience, then share. And most times, over time, the person can handle more and more. As far as sharing the good and the bad. I really wonder if anybody really knows all the possible bad, or complications that can take place? I know several people who asked me " why doesn't my center tell me every single thing that could go wrong?" Well, my idea, and this is a guess is that "do you have a few years to read?" Why? There must be volumes, upon volumes of POSSIBLE complications. If the center shared that with you before you made a decision to list or not, you would be dead from the time it took you to read the stuff. But more important, not all those complications are going to happen to you. Most times complications are not even part of the post tx regime. It does happen, it will continue to happen, it may happen to you, but who knows. You can read a volume of complications -with 100 possible things that COULD go wrong. What are the chances those particular complications would happen to you? Not very high chances.My complications had to do with an air leak due to my lungs were from a much larger person and they had to "trim" them to fit me. Well that took a long time to "seal". It included a second reluctant surgery by me and doctors. It took me 72 days to get out of the hospital, and thought it would never arrive. Who else is going to have my problem? Who wants to even hear about that? My other problem was a digestive one. A "behzor". I know some CFers get it post tx, but not a whole bunch. I also had some drug reactions that had to be changed. Thank goodness there are many different meds so that you can try an alternative. My other problem has been long term acute rejection. I have stage 2 rejection, have for 5 years, but it does not effect me. So I like to tell others, "rejection is something you can live with too." Rejecition is a scarey word, but once you learn about it, experience it, and learn it is very treatable, it is not such an issue.Hope this helps just a bit. Please email me anytime. I am almost 6 years post lung tx, my sister is 2 years post. Doing great here. I hate that this message board does not put our email addresses up and we are all "anonymous". I am Joanne, not anonymous and my email is [email protected]

Liza
06-24-2003, 12:38 PM
Hi Joanne, Did you try registering or logging on if you are already registered? It should get rid of your anonymous problem. I also have noticed on my computer that sometimes when I shut down and then reboot that I have somehow logged out and have to log back in. I have noticed alot of anonymous posts and figured people just didn't want to register or didn't know they could.I also want to thank those of you that have posted about your lung transplant. The information you give is valuable to us that don't really know much about it. It helps to hear it from people that have gone through it. I think someone mentioned you don't really hear the bad experiences because they are not here. I think you can have that bad experience and still be a survivor, just not one that would be willing to go through it again. I myself want to hear as info. as I can in case my daughters ever have to make that decision. I have one question though, I seem to hear different answers. I think it has been brought up here before when the old forum was set up. Once you get a double lung transplant, your CF is GONE, in your lungs, never to return to those new lungs. Yes, it is still in the rest of your body affecting your pancrease, sinus' etc but not your new lungs. Is this correct? That is what I was lead to believe by our CF docs, but the question has come up in another message board. Liza

Dea
06-24-2003, 02:40 PM
Hi Liza,Just thought I would help out the question about the lung transplant. From what I understand (I have discussed it with my docs) the new lungs DO NOT have the CF, because they know how to transport the salt correctly...so the mucous doesnt bother them. The problems of lung transplants occur sometimes when the body rejects the new lungs. Hope this helps!Dea

anonymous
06-24-2003, 04:04 PM
Dear Person who is waiting for thinking about a transplant.My name is Risa and I had my double lung tx seven and a half years ago. You see every six months, I add on a half and cherish each day no matter what I do with my new life. I did really well post transplant and was out of the hospital witin ten days. the only complication was acute rejection which only lasted on and off for six months. Thankfully, I am in great health and take good care of myself. I take vitamins, eat healthy food and exercise. There is a website called Transplantbuddies.org where there are many folks with various organ transplants. you can register for a password and post and ask questions there. About me, I am 43 and love life. I am here today and in good health because of my transplant. feel free to email me [email protected] and ask me some questions. SincerelyRisa

anonymous
06-24-2003, 06:31 PM
Joanne, Thank you for your thoughtful response. It was the most honest response I've read so far. It's hard to wrap my mind around a concept where death isn't the worst thing that could happen- it's surviving with one complication after another. In other words, and what scares me the most, is crossing the line from preserving life, to merely delaying death. I think that once you've confronted your own mortality, anything that comes after that is small by comparison. All of you that have had transplants and have lived to tell about it have done just that. You roll the dice and prepare for the possibility that you may not survive. That kind of mindset is difficult to convey to someone who's not at death's door just yet, but who may be considered a tx candidate... and then there are those who believe that going through with the transplant process and subsequent operation, is simply asking more than they can give. Thanks for letting me air my opinion--Wes

anonymous
06-24-2003, 09:29 PM
I'm the guy above quoted about the "no excuse".Sorry I didn't mean to sound judgemental.I maybe should have worded it diff. I did not have a walk in the park either. The lung I received had a pneoumonia.I kept 4 chest tubes for most of the 27 out of the 31 days I was their in the hosp.The right lung refused to expand.So;I well know of complications;and I was also told of all the bad.I was prepared.If I died I died;if I lived I lived thats how I saw it.I was gonna be dead either way.My reg pulm. doc had told me the same thing about it is nothing more than trading one set of probs. for another.Perhaps that is why I waited so long before seeing a Tx doc.Now that I look at the situation I don't see it as trading probs.I was at my sickest and was gonna be dead by 8/9 months.Constant I.V.'s every six hours for most a yr. straight.Sleeping no more than a few hrs. at a time.Keepin' O2 on round the clock was a constant annoyance. Now all I gotta remember is when to take a few pills;no aerosols;no excess antibiotics destroying me.Sure I got diabetes now from the Tx;but that doesn't bother me either.The freedom I have now to move about like I hadn't been able to is more than enough of a reason for me. As I said for {ME}.It may not be for other ppl.BYRON

RadChevy
06-27-2003, 08:27 AM
Liza, I am hoping this goes through.Anyway, Yes, the new lungs will not get CF. The CF gene in the lungs was tossed out with the CF lungs at transplant time. There is no way for the CF gene in other organs to "move, advance, transfer, invade" etc into the new lungs. Gone forever.Yes you do have the CF gene still in your other organs. For my sister and I ( she is post lung tx 2 years now) we both seem to have improved in other ways too. I take less enzymes, she needs none. My sinuses are better. I am not saying this happens to all post lung tx folks, but that is what I found.HOpe that helps.Joanne

anonymous
06-29-2003, 04:00 AM
a simple question but...if everything goes well in a transplant, eventually i mean, even after a possible period of struggle, and your lungs do not have CF anymore, what are the other drawbacks of it?I know that for those of you who have gone through this it has not been easy, and the choice must be life-altering, but when all is said and done, your lungs do not have CF anymore, my god, it must feel like a miracle.i have heard mention of having to take rejection drugs for the rest of your life...is this true? or having your body reject the lungs waaay later...stage "__" rejection? ...what is this? also that even later on down the line you are still more prone to infections?

anonymous
06-30-2003, 02:23 AM
Hi - I'm from IN and would like to know if anyone knows the qualifications, time frame involved in qualifying and average time spent waiting.Thanks for all the info. GSH

anonymous
06-30-2003, 03:24 AM
Answering your simple question!You are on anti rejection medication for the rest of your life. The threat of rejection and infection is always there but as you have read it can be treated. I'm only newly done so I'm still learning....You can reject from day one and have many problems with rejection, but you can also go months without rejection, some people dont have any rejection, but thats not to say they wont later..Every case is individual and what one person experiences wont necessarily be what happens to some one else....I'm sure there are better more experienced people that will answer your question a lot better than I.......There are many great transplant sites they are full of excellent information, just look around and keep reading...

serendipity730
07-04-2003, 12:21 AM
If the new lungs don't have CF, then why do most people only live about 5 yrs after a lung transplant?

RadChevy
07-04-2003, 09:48 AM
Serendipity.I know the doctors say that the life expectancy of post lung transplant is 5 years. But my being now 6 years post tx and doing better than ever before and the fact I have many friends who are 8 or more years post tx, I am not sure why that 5 year number is still being used. I am saying from my uneducated guess that the rate is about 7 years now. Again, just a guess on my part.So why do we live about 7 years after tx? Well several reasons. We are immune suppressed. So we can catch things a bit more easily. Meaning an infection. And if you are suppressed, it means that the infection might not be as easy to fight off. They reduce the suppression if this is the case most times. But then you can run the risk of rejcetion. I have had two colds in 6 years!!! They both were minor, and lasted about a week. Nothing like CF lungs.Also BOS, or chronic rejection. For the most part, chronic rejection is still not understood completely. Why the small airways scar and get damaged with time is a mystery. But this does happen to many after a number of years. Rejection is the leading cause of death after transplant. However, I want to stress that rejection is common, and expected in the first few weeks after tx and also in the first year. It is also very TREATABLE. There are many drugs and therapies out there to help get rid of the rejection and they work for the most part.I am a good example of this. I have have had stage 2 rejection for over 5 years now. There are 4 stages of rejection. There are 4 stages of rejection in lungs. 1 being the least, 4 being the most. Now I have had this for years. It was treated with various methods in the first year and half. But my rejection can be labeled as "ghost rejection" It appears in biopsy, but I have no effects from it. My PFT's are about 90%, my energy level is non stoppable, and I can do anything I want and feel great. So you can live with rejection many times.Hope this explains a bit more for you.Email me anytime. [email protected]

serendipity730
07-04-2003, 09:55 AM
Thanx Joanne! That was very helpful, and I am glad to hear that you are doing so well<img src="i/expressions/face-icon-small-smile.gif" border="0">

anonymous
07-19-2003, 12:10 AM
Hi Everyone!I don't know where to go to find some help. My name is Maggie. I live in Chicago and I am Polish. Very recently, my aunt contacted me from Australia asking for help. She has a couple of friends, who have a 17 y.o. son with CF. These people are also Polish and apparently are in Greece right now. But I am not sure for how long. Their son needs a lung transplant and they need help on getting it. I thought that maybe the Polish-American Association could help them raise some money, so I'll be contacting them too. Apparently they have enough money to pay for the surgery, but I don't think they realize just how very expensive it really is. How can I help them? My aunt said they don't do lung transplants in Greece or in Australia. True or false? Is there any way they can be legally allowed to come to the US and have their son put on a waiting list for a lung transplant? I really don't know how to help them or where to start. Is there a CF Foundation chapter in Australia or Greece they can contact? But after reading the message from TRACY on here, I see that Australia does lung transplants. Where should they go in Australia? Who can they contact there about getting their son on a waiting list? Please, anyone out there, help me to help that family!Sincerely,Maggie<img src="i/expressions/face-icon-small-sad.gif" border="0">

anonymous
07-19-2003, 01:42 AM
Hi Maggie,Australia has three transplant centres operating. One in Sydney, one in Melbourne and one here in Brisbane.I really don't know who to contact about getting on the waiting list. All three centres are exceptional.http://www.cysticfibrosisaustralia.org.au/, thats the website for CF australia, they may be able to give you some advice.Good luck and I really hope you find some solutions. Take careTracy

anonymous
07-19-2003, 01:47 AM
Hi maggie,I just tried to do a reply and I dunno were it went.Australia has three transplant centres operating, one in Sydney one in Melbourne and one here in Brisbane.I really dont know who you would have to get in contact to get on the waiting list, especially if they are not a resisdent of Aus, I'm definitely not up to speed on that one.http://www.cysticfibrosisaustralia.org.au/ that is the webiste for Cf australia they may be able to help you find some answers.I really do wish you all the luck and hope you find some solutions soonGood luck and take careTracy