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Caregivers for Lung Transplant Recipients

This is a group to support caregivers of those who have had a lung transplant.


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Abbie T said...

1 day ago

I am going to be a secondary caregiver for my brother when he gets a lung transplant. I am looking for a caregiver support group near Marion, Ohio.

Helpme444 said...

12 days ago

Hello everyone. I have recently had a family member get a double lung transplant on 7/7. They had to keep the right side of his chest open due to the lung being too large. He just went yesterday morning to get it closed up. All went well but now he is having a hard time coming off the breathing tube. He is taking quick shallow breathes almost like a panic attack. He seems very irritated and uncomfortable but is claiming he is not in pain. He is a very restless man normally so it is not unexpected. My question is how long has other reciepents of double lung transplant been on breathing tubes and is this time length normal. Prior to surgery the doctors made it seem he would be off of it that day.

18 days ago

My mother was just recently added to the transplant list, and she will need a double lung transplant. Her doctors seem to think that she will be transplanted in the next few months, and I'm very happy for her. She has a wonderful support system, and I couldn't be more proud to be a part of this journey. She is my best friend and my hero. The problem I am having is that I am (naturally) having a lot of anxiety about what happens if the surgery/post-surgery does not go well. I am so close to her, and it is really painful for me personally even though I'm trying to be strong for her. My fiancé, who I have been with for 10 years, has made it known to me that he feels that he is in competition with her. We've been together for a long time, and most of it has been long distance. I just recently (May) graduated with a doctoral degree, so my plan was to become licensed and move to be with him in the fall. I've been studying the state materials for his home state, etc. The problem is that he keeps telling me that he feels like I'm choosing my mom over him because I am sad about the move. I'm scared to leave during this time with her, but I've never said I'm not coming. It's been a constant spot of tension for us for ten years, and we even broke up in the past because I asked him to move here when she got sick and he said no. He doesn't like where I live. He did not have a steady career in his state nor was he in school. It's the same all over again. He has said no to moving here. He told me that he didn't want to get married in my home state (again because he doesn't like it) even though mom can't really travel. I had to put my foot down very harshly about that, and it caused problems. In sum, it has caused contention to the point that he actually told me on my graduation day a few months ago that he was considering breaking up because he was tired and competing and seeing me sad about my mom. I'm just not sure what to do. I don't feel supported at all, but he is my fiancé. I don't feel like I should have to hide being sad about my mom or feel that I can't put her first during this hopefully temporary time. I want to be here to take care of her, but he told me yesterday that he didn't think he could give me the emotional support that I need in this area because he resents her. Please help. I could use all the advice I can get.

Tranplantwife said...

19 days ago

Hello I am new here. My husband had double lung transplant on 6/6/2017. We spent 21 days in a hospital 2 1/2 hours from our house and after being home 48 hours he was readmitted to a hospital closer to home for a chest tube to drain some fluid (he is having some rejection). This process is very draining as I have a lot of friends near but not much family our kids see grown and live far so it's me for everything

Tranplantwife said...

19 days ago

Hello I am new here. My husband had double lung transplant on 6/6/2017. We spent 21 days in a hospital 2 1/2 hours from our house and after being home 48 hours he was readmitted to a hospital closer to home for a chest tube to drain some fluid (he is having some rejection). This process is very draining as I have a lot of friends near but not much family our kids see grown and live far so it's me for everything

MOA said...

about 1 month ago

(Mareo). I wish you peace ! I so appreciate your honesty in telling your story. While I hope and pray for a transplant for my husband,we hear the figurative clock ticking,I fear the "after " stage...knowing that your husband has had these years of relative comfort before the cancer strengthens My gratitude for what can be a reprieve, and also strengthens my conviction that anything can happen.Im sure my brain would be screaming " Enough! " if I was in your shoes. I hope knowing what a solace you must be to him is of some comfort to you. I wish peace for you and no pain for him.

about 1 month ago

My husband is 72.5 yrs old. He is going through a transplant evaluation now. When I read all of the post, I get scared for him and myself. I have not agreed to be the second caregiver yet because of all of this. I spoke to the MD about medical management vs survival and quality of life post transplant. Same outcome, but as I read all of the postings there are more problems involved. How can I agree to do this when quality of life is a real issue? He is already depressed and not engaged.

mareo said...

about 1 month ago

Snow Angel said...

6 months ago

My husband received a double lung transplant in 2015. His lungs are working very well and we have not really had any issues with that, but his mental state is not the same. We have 7 children and he has always worked to support us. I am now the sole bread winner and he receives little from CPP-D and AISH. He has had a lot of problems with his short term memory. His motivation is completely lacking and he seems to not care anymore. I am to the point where I want to run away. Our marriage is strained, I sleep in a separate bed room. He had his third heart attack in January of 2016, a year after his transplant. I feel anger and bitterness towards him as he does not participate in life. He does not talk either so I never know what he is thinking. It's worse than being alone. When he does talk he does not talk about anything that would help lighten my concerns. So now I do my own thing and things have become very strained at least from my point. I find myself getting irradiated with him over the slightest things. There are so many things he would be capable of doing to help me but he does the very minimal. It is to the point where I don't even want to be in the same room with him. Don't get me wrong, I do love my husband but I guess the husband he used to be. This transplant has changed both of us drastically and I'm not sure that we can recover. Has anyone else had this type of experience? Now with his heart condition on top of everything my days pass in constant fear of finding him after a massive heart attack.. Please tell me others have been in the same place and there is hope of it getting better.

LouR said...

4 months ago

Greatkarma said...

14 days ago

mymtnpeace said...

over 1 year ago

My husband will be having a double lung transplant soon. We will be relocating in the next few months and it is getting scary. I am just looking for more information about what kinds of things to expect.

Mcodina said...

almost 2 years ago

First time on this site. My boyfriend had a double lung transplant 2 1/2 years ago from Cystic Fibrosis and it's been hard in and out of the hospital so much so that they could charge rent. The surgery and first few months were great but his quality of life has gone down so much. Constant battles with doctors, pain meds due to being a recovering addict,several years clean, I'm exhausted and don't know what to do. It's debilitating being a caregiver when nothing seems to work and I feel guilty for fantasies about having a normal life that doesn't revolve around hospitals. I love my boyfriend he has changed my world for the better but there are things I want in my life that he can't give me. Don't know what to do. Feeling very lost and alone. He is an amazing man who inspires me everyday but I cry and scream in my car over how unfair it is when I leave the hospital. His illness feels like the "other woman" in our lives that you just can't get away from. I find myself thinking what sort of person leaves their love when the chips are down? I would love any advice on how to either be stronger for him or how to cope with the voices on my head .

tracjo88 said...

over 1 year ago

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