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Welcome to the PF forums Carmela, thanks for joining us!
Hi Charlene—Thanks so much…I’ve actively been reading your articles and those of our beloved Kim Fredrickson since I was diagnosed with interstitial pulmonary fibrosis in March 2016. These sites have been the source of my knowledge about the disease. When you posted the article about your legs and feet swelling, and I couldn’t reply without registering, I registered. Thanks again for the warm welcome, glad to be here, so much to learn!
In March 2016, I had congestive heart failure. The first sign was the swelling of my ankles and feet; I was immediately hospitalized. The doctors said I had an “exacerbation.” Though I don’t have heart problems per se, pulmonary hypertension has become part of my diagnosis; I wasn’t getting enough oxygen. It’s importat to take the swelling seriously. I had to wear compression stockings, or TEDS, as they’re also known, for the 6 weeks between the hospital and the rehab center. My concern is that it sounds like some doctors take the swelling too lightly.
I wholeheartedly admire and respect the breadth and depth of your knowledge and strength, and I know we willl continue to learn and benefit from each other’s support.
Thank you for your kind words about my columns and about our Kim. She’d want nothing more than having us continue to support one another, so I am glad you’re here and we can help each other. Sorry to hear about your diagnosis – you were diagnosed one month before I was. I’m glad the site has been a source of information about the disease; I find I learn so much more by connecting with other patients directly and I am honoured to have this platform do that.
Sadly, PAH has become part of my diagnosis as well, although no treatment for it yet, just being monitored. Did they say which “caused” the other for you (ie. did the respiratory issue come from the heart issue or vice versa)? I will keep this in mind and be a stronger advocate for any swelling I notice thanks to your story. I really appreciate your willingness to share this with us!
Thanks again for your kind words. Always here for you, please feel free to write anytime 🙂
Great to hear from you; I thought I had messed up the registration process.
I had to research PAH–it’s difficult keeping the information straight– I gather this is a recent diagnosis? In my case, congestive heart failure was a result of the lower ventricle sending the bad oxygen blood to the lungs thus producing the fluid that caused the swelling– that was the first time- I do think it’s important to take the swelling seriously. Is the PAH diagnosis a result of the swelling, because that is one of the symptoms as I’m sure you know. After being home less than a week, I went to the emergency room because of an erratic rapid heart rate that did not subside overnight. I was re-hospitalized instantly because the doctor thought I was in afiib. In reality, it was a reaction to a nebulizer that had been prescribed — in addition to oxygen 24/7, I use a nebulizer 6x a day.
Total life changing experience as you know; I refer to it as the “new normal.” We face new challenges daily. I’m much older than you; I admire your strength and endurance.
It is so comforting to know that we’re here to help and support each other. There are peculiarities in our lives now that aren’t understood by everyone. It is an honor for me to be part of these forums, to tell each other’s stories and to offer suggestions, comments when we can. You do a phenomenal job of leading the forum!
Sincere regards, Carmela
Not at all, my deepest apologies for the delay – sometimes it is tough to keep on top of my email notifications and replies! You did great with the registration process.
Yes, PAH – Pulmonary Arterial Hypertension. I haven’t been formally diagnosed with it, but the cardio-pulmonary team here keeps a close eye on my pulmonary pressures which the one doctor says are high due to my heart working to compensate for my lungs. They say it is inevitable that I will develop PAH and will likely be formally diagnosed in my next few visits with the specialists. The swelling is likely due to the PAH, not the other way around I am told but I am sure it is all connected. So sorry to hear of your heart troubles being caused by poor oxygen perfusion being circulated to the lungs. This is such a cruel disease!
This is a new “normal” I agree, one that I wish we didn’t have to adjust to but the reality is we do. What else can we do other than try to move forward, right? Thanks for your kind words, I really appreciate them. I am so grateful for these forums, and I too find a lot of comfort in the fact that folks can relate directly to my experience, although I wish none of us had to. Most of the people in my life just can’t understand, so I am very grateful to everyone on this site. Your kind words mean a lot to me Carmela, thank you for brightening up my day!