Did anyone have a transplant before they needed oxygen

[mkosborn]

Hey everyone this is my first post. I go to the Vanderbilt CF clinic and a few months ago they referred me to the Vanderbilt Lung transplant center. I got the call yesterday that they had put me on the transplant list. This confused me because 2 weeks ago they called and said that they were not going to list me now and that they wanted to see me again in a few weeks. I told the nurse yesterday to make me inactive on the transplant list until I could talk to the Director of transplant. I am hesitant to get listed right now bc I dont need oxygen. I do have pfts between 25 and 28% and I do IV antibiotics every 3 to 4 months. I grow pseudomonis and I have grown some mold like Aspergillus and 5 years ago I have Microbacterium Avium. However I can still work out 3 days a week without oxygen and I can do all the normal things in life...just at a slower pace I would just like some advice or if any experiences about your decision to List.

Thanks,

MK
(22 yrs old)

 

[RytheStunner]

I was listed for transplant in 2005 and made inactive in 2007. I have been inactive on the list ever since. I have never needed O2 in my life, and I've never been hospitalized twice in a 1-year period. I typically do a 3-week stint of IV antibiotics every summer as a tune-up, but I work full time and I'm very independent. My FEV1 has been in the 22-28% range for the past 7 years. If I were you, I'd stay inactive on the list as long as possible. It's a really good position to be in.

 

[jbrandyn]

I use it on occasion at night and I am nowhere near getting a t-plant. I just have a standing scrip that I use when I need it.

 

[CrisDopher]

You and I are in the same position. Miserable PFTs - but no need for oxygen yet. It's bizarre, I admit. My instinct tells me - and I have nothing to confirm this, so you should ask your doctor - is that people with as little reserve as us go very quickly when we start to go. When all of a sudden we do need oxygen, our lungs are so far gone that getting listed and waiting may be too long. Our lungs will deteriorate and kill us before new ones become available. Well, that's my fear - it may be totally baseless! The modern tx list IS need-based and if you've already been evaluated and on/off the list once, most of the paperwork is done.

On a related issue, at the patient seminars, when I've lifted chairs and I'm no on O2, I get the comment "oh, you don't need a lung transplant" all the time. It kind of burns me. No, I don't need one RIGHT NOW - but neither do half the people in the room - but we're all very close. I don't think those commenters realize how close and sharp the tipping point really is for those of us with low PFT/hi o2 sats.

 

[mkosborn]

Thanks for some of the feed back! RytheStunner I really want to do what you have done and stay inactive on the list. Right now that is the plan. I have a new work out schedule and diet in place and I am hoping to regain some lung function or at least keep it stable. CrisDopher I totally understand the fear of suddenly getting sick and not being able to get a transplant in time. It is a difficult decision to make. We are basically making a decision based on "what if" possibilities. My lungs could stabilize and last 5 more years or I could get sick very fast and need an immediate transplant. It is a decision I cant make on my own and am seeking in constant prayer.

 

[Daverog75]

Hello,

I have 24% lung function and like you never have needed O2. I am currently on the Transplant list here in Canada. I am on the list because I know how much I am struggling now and don't want to find out what 20% or 19% feels like regardless of O2 needs. I would not use O2 too judge if it is time to be listed it depends how well you feel and what you are capable of doing.

If you are between 25-28 and you feel you are still very functional then don't get listed but if you are really struggling to do basic things then I would go ahead and save your life now instead of waiting until you get to the point when you need oxygen. Remember early is better than too late.

Dave 37 w/cf and currently on the transplant list.

 

[PinkPigg]

Hey All,

I'm in somewhat of a similar boat. I was evaluated 2 years ago and at the time FEV1 26% and O2 1L with sleep only. During the tx evaluation they found out I had rectal cancer. So after it was cured I had a two year waiting period before being able to be re-evaluated. Now that 2 years has almost past. I'm currently only a point or so off my FEV1. However now I use O2 with strenuous activities. After my recent hospitalization I'm needing it sometimes even if I'm just tired. Hopefully I can regain but who knows. The good news is I have the re-eval scheduled for the end of November.

My point is that it seems like many of us are at the edge of a downward slope. It wouldn't take much to start the ball rolling down that slope and suddenly need more oxygen and be more limited in what we can do. I feel like I just got a little push down but hopefully my slope is not too steep. Regardless, I'm doing all I can to be in the best position for Tx possible. I'm exercising, doing my treatments, and still trying to enjoy life as much as possible.

Here's to hoping for the best!

Peace,
Steph

 

[mkosborn]

That is so great that you have come through your rectal cancer! That is such a blessing! It's also wonderful that you havent slipped too much in lung function either during the waiting period. That is exactly why I am so hesitant right to get a transplant now bc I wonder if I coud have two more years without my lung function fluctuating too. Its awesome that you are still excerising and trying to keep in the best of shape especially for Tx. It will make all the difference! Good luck with evaluation!!