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pH with copd
Does anyone in the group have both COPD and pH?
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13 Replies
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Hi Kathy, I did not have COPD along with PH, but I’m sure our forum has some members who do. I read that you are going through the transplant evaluation process. I’m sorry your condition has progressed to this stage, but lung transplantation can be a great option to increase your quality of life. My heart-lung transplant has been transformative and I’m happy to answer any questions you have about the process.
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Hi, Kathleen!! Thank you for your response. Wow, both heart and lung transplants. I’m in awe. Here I am scared of just having my lungs transplanted. I pray you continue to do well!!
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The heart and lungs go in together as a unit so it’s not necessarily any scarier of a procedure. It’s okay to be scared. In fact, I’d be worried if you weren’t. Just keep asking the right questions and then trust in your team. They’ve done quite a few of these!
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Kathy,
Yes I have both PH and COPD, and rheumatoid arthritis. I was diagnosed late in 2016 and put on Letairis, Breo, Incruse and Celebrex. I am also on O2 for sleep and exercise. My pulmonologist “casually” mentioned a couple visits ago about maybe seeing about getting me on the registery for transplant in a year or two. Wow, that knocked me back on my heels! I don’t know if I’m just hardheaded,but I don’t think I am as bad off as all my test numbers say… I’m just going with it, and hoping my body will tell me when I am starting to progress downward. How about you?-
Hi Cris! Thank you responding. If you don’t mind me asking, what is your fev1? Mine is 19%. Haven’t had it checked since last year so could be different now. I just found out last month that I have moderate pH. I am going to MUSC Monday for initial transplant consult. Needless to say I am scared.
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Hi Kathy!
Ughhh the Fev1 and breathing tests are the absolute worst ! I get so symptomatic when I get a PFT. My FEV1 is usually about 28-30% and I have adapted to it as best as I can. It hasn’t dropped dramatically, but when I’m sick with an upper respiratory infection or something I can definitely feel the toll that it takes on my function and even the slightest drop just throws my body off so I can’t even imagine what 19% function is like for you! Are you very symptomatic through the day? -
As long as I go slow, I can usually do everything I need to do. I have a husband but he works 14, 15 hours a day and sometimes he has to work overnight. I am grateful that I can still take care of myself. I do all the cooking and cleaning but I do let my husband do grocery shopping for me although I do the grocery pick up thing but it is really hard getting them in the house. I bring the cold stuff in first and take my time with the rest. I also HATE the pfts but they are a necessary evil.
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I’m glad that you have the support of your husband and that you can still feel like you are doing things too! It’s tough to start to lost some type of independence whether it’s depending on someone financially or to help you physically, either way it is difficult. Support and understanding is so important! You are right about those PFTs too! Definitely a “necessary evil” and a good way to keep track of our progress on different medications too.
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Kathy, my last FEV was 39%.
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Thank you so much for chiming in, Cris!
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Hi Cris,
Hearing about transplant definitely must have been a shock especially if you weren’t expecting it. I have heard that it’s better to go through the process of evaluation when you are feeling “strong” though and not wait until it gets to the point where it’s so bad because the evaluation process and all the testing can be physically and mentally demanding ! Maybe that’s why your doctor is suggesting it. I know it can take quite a bit of time too to get all the testing for it. Kathleen is a great source of information when it comes to this because she had a heart and lung transplant and is kicking some butt, in my opinion!-
Oh Brittany, shock doesn’t come close to what I felt upon hearing those words. What you said in your post about starting the process early enough for evaluations, testings etc is exactly what my doc said, but like I said to Kathy, maybe I’ve been bad so long I don’t know any better. I don’t feel as bad as my tests say I should. Not that I’m complaining, lol I would rather it NOT be the other way. My last FEV was 39%. We’ll see. I do think however, that in my case, keeping the RA and COPD under control keeps my PH pressures from getting worse (for now).
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Hey Cris,
I can definitely understand everything you’re saying ! I agree that helping the RA and the COPD the best they can is probably helping to keep things from progressing any more than they are. Are they thinking that these two are contributing mostly to your PH? I can also understand the feeling of feeling “bad” for so long that it almost becomes your “normal” and you’re like “am I supposed to feel another way?” It’s crazy what our bodies can adjust to and what we can endure on an everyday basis !
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