2nd Transplant?

[LovingMyTeddy]

Hi all,

I have checked out this forum several times in the last few years but never joined. But today we got the news -- my fiancée will be going on the transplant list. Not for his first bilateral lung transplant but his second. He has been graced with 6.5 wonderful years because of his first transplant but after a summer of pneumonia and BOOP which allowed for major acute rejection, his lung function has gone from 52% in late June to 18% currently.

I hadn't met him before his first transplant so I've not gone through the whole process before. But I'm wondering if anyone out there has been in this spot or is currently. He says this is "nothing like" the first time around because there isn't anything to cough up, he simply can't take deep enough breaths. He struggles with anxiety of feeling like he's not getting any oxygen at all although (with constant flow of 4-6 liters O2) his o2 sats are still in the mid 90's. Any tips for how to help him go calmly through these times?

Thanks for your help and support.
Sam

 

[Daverog75]

hello sam,

I am currently on the transplant list myself so I can relate to the situation. Everbody is different, and I don't suffer any anxiety over this but as far tips to calm him down you just keep telling him that you are going to be there to help and that he is not alone that might help, but he may not be calm again until after another successful surgery which is what everybody waiting for lungs is wishing for.

Dave 37 w/cf

 

[Gemini]

My husband suffered from major anxiety. I had him do 3 things. The first was he repeated "I can see, I can feel, I can hear, i can breathe, I am alive." Another one was to picture Each color of the rainbow going up his body. (Red around his waist going up to violet around his head. Then do it backwards) The last thing that helped was I would tell him to name 4 things he can see, 3 things he can hear, 2 things he can feel, and 1 thing that he loves. And if all else failed he popped an Adavan (which I was not thrilled about)

 

[coltsfan715]

I had my first transplant about 5.5 years ago and was diagnosed with BOS earlier this year (shortly before my 5 yrs). I am not at a point where I need to be relisted for another transplant right now, but have gone from roughly 90% FEV1 to 50% FEV1 over the course of the Chronic Rejection this year. I have been stabilized, so we are just kind of playing a waiting game to see if I stay stable long term.

I can agree with what your fiance says to the point that getting "sick" post transplant with Chronic Rejection and experiencing the respiratory issues post transplant is nothing like losing lung function pre transplant. I get wheezy sometimes now and rarely got wheezy before. I do get anxiety sometimes, but it is more because of the unknown. I will get short of breathe doing simple things but not doing extremely strenuous things, so I am still kind of finding my bearings with this new diagnosis. It can be overwhelming. I rationalize it this way though - for me I even told my mom and boyfriend that I will take this post transplant loss of lung function over CF loss of lung function any day. I am not coughing constantly and am not always exhausted.

I can't speak to the exact situation your fiance is in because I am not there yet, but to me the process and handling it is easier at times. The really crappy thing is that the small airways are slowly destroyed or obliterated with Chronic Rejection of BOS or BOOP. My transplant doc likened it to being in the middle of an asthma attack all the time and that slowly gets worse. You have a lot of inflammation so you feel like you just can't get a deep breath in. The loss of lung function also happened a lot faster than it did before the first transplant, so the limitations that it places on you are more obvious.

Think about it this way - prior to his first transplant he had years of gradual decline and his body was able to gradually adjust. This time he lost the same if not more lung function over a much shorter period of time. It is harder for the body to adjust to the changes when they happen fast. If he gives it some time and takes things slowly, makes the necessary changes in his activities to accommodate his current health status he may find it easier. It took several months of me adjusting my daily activities to get to a point where I felt "okay" doing the things I used to do. Exercise though hard has helped a lot. Even though it hasn't helped improve my lung function it has helped increase my strength and that has helped me not get so fatigued with activities despite the loss in lung function.

I wish you all the best and that your fiance gets what he needs and his new transplant sooner rather than later.

Best wishes and good luck to you all.
Lindsey

 

[LovingMyTeddy]

Thanks all for your advice on helping him through the anxious moments and such.

The past week or so has been better - a lot due to the fact that he decided to stop working... giving him plenty of time to get the rest he needs and not the stress of getting to/from work on time, etc.

His doctors discussed it and decided to put him on a very low dose anti-anxiety med also. It isn't "effective" yet as he's only been taking it a few days but hopefully it will take the edge off when he starts to worry but not take away any of his personality and emotion (which was my biggest fear of him going on such a med.)

We are still waiting to hear from Cleveland Clinic about starting the evaluation process to have his transplant there and heard from the U of Michigan hospital this week that the surgeons are still considering if they'll do it or not. They did his first transplant but haven't done a second bilateral transplant so they are leery of who is the right candidate and what is the right time for that major milestone.

Hope you all are doing well,
Sam