Lung transplant
I have Eosinphils Asthma with allergic to wheat and vocal cord disfunction. Last Nov, I was hospitalized with asthma attack, respiratory failure and mild Heart failure. I have been sent to a cardiologist for the Heart failure. My first visit with him, he recommended a lung transplant. I didn't expect that on a first meeting, I didn't even know that they would do it for asthma I was born with. Now I am 65, struggled most of my life and now they bring it up. I have many conflicting emotions regarding this. Its a 1 yr recovery, I barely survived this last yr. I couldn't even stand andnreath from Nov, thru March. My daughter and family sold their house in Utah and moved back to Ga. In with me to take care of me, because they wanted to send me to a nursing home twice last yr. I didn't even know they would do it for asthma. Definitely overwhelmed. I don't even trust the medical community to keep me medicated for pain or anxiety to get me through it. It is already difficult to stay Gluten-free as it is. The anti rejection drugs also are ineffective with certain foods. Some of the foods I actually can eat now. Since I was born with asthma, after the transplant, would I still have asthma? Has anyone else had a lung transplant? For asthma? How hard was it on you (your body)? What was it like physically afterwards. Better or some of the same problems with breathing, maybe just not as severe? Trying to decide if I would be making changes for the better or getting different problems.
wow, you have certainly been through a lot especially within this last year. I can totally understand why you would have so many conflicting emotions. I am you do have family that moved to be with you. But that really is a lot to process and it sounds like you're carrying a lot of questions and uncertainty right now. I really hope if some of our community members have gone through lung transplants themselves, can chime in and share their experience with you. For now, just know that we are listening, and I am really glad you felt comfortable sharing all of this with the community. Sending you so much love as you navigate all of these emotions and decisions <3 -Kimberli (Team Member) Thank you, I appreciate your support. I have made a decision to go see my pulmonolgist who i have known for a long time and see what he thinks, there must be a reason he hasn't brought it up. See if he can answer some of my questions. And then talk to my therapist and see if he thinks my mental health can handle this additional stress. Is it even manageable? Especially with vocal cord disfunction. I think these are good places to start.
I had just finished pulmonary rehab program last week trying to get stronger. I am grateful for everyone who has helped me to this point and no matter what my decision is, I am going to be good with it. I appreciate the support I get from this community. I didn't even know they could do that for asthma. I knew if anyone had information, it would be someone from this community though. Thank you.I think those are really great places to start. It can hopefully give you some clarity you have been looking for. And I think it makes a lot of sense that you are also thinking about how this could affect you mentally and emotionally. You have also just finished pulmonary rehab, which is a huge accomplishment in itself. It sounds like you have been doing a lot to get stronger and take care of yourself through all of this. I really appreciate the way you said that no matter what decision you make, you're going to be okay with it. That is a powerful place to come from when there are so many unknowns! Please stay in touch with everything, if you are up to it! -Kimberli (Team Member)
Wow! My heart goes out to you. This is a lot!
Prior to my diagnosis I could hardly walk the hall in my house I was weak and not getting enough oxygen. It took a Dr. that really listened to my concern and symptoms to suggest lung function testing. From there I was referred to a pulmonologist. I am a doctor shopper for a lack of a better phrase. I really look at profiles and what they find most near and dear to their interest and practice. I made the calls to get into the Dr. that considered lung issues as my problem. If not for that Dr. I would probably be on medication and treatments that have no relation to my condition. My legs hurt and my head hurt so they were giving me muscle relaxers and nerve pain medication etc. All the wrong stuff.
Being on the same page with a Dr. is huge! I am glad you have a relationship with your pulmonologist.
It is very important you have a GP that you can work with and specialists that have your best interest in mind not only for what is best medically for your but also best emotionally for you. Ask a ton of questions and do not be afraid to say no or to walk away and find a Dr. that will listen and care in the way you need.
I hope you find the the medical team that is there for you and your needs. And that you find the help and treatments needed to get you back on the path of wellness.Thank you very much. I have a very good pulmonolgist and I trust his judgment. I have appt on Sept 10 to discuss this. I have lots of questions. And my opinion is if I was a candidate for a lung transplant, why didn't he bring it up to me? Thanks for the advice
I know your appointment is coming up on Thursday! Just wanted to send an early good luck and say that I hope your conversation at your appointment brings some clarity you're looking for and helps you better understand your options moving forward. Don't hesitate to ask all the questions you have. Write them down, store them in your phone, whatever you need so you remember them! Sending gentle hugs. -Kimberli (Team Member)
