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COPD
What are everyone’s symptoms with COPD ? And quick or long diagnosis story’s with COPD /breathing problems
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12 Replies
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I suffer with COPD, asthma, and PH, now it seems that I have been treated for over 5 years for the wrong type. I seem to have “pulmonary venous hypertension” caused by left heart disease. Best treated by cardiologist and nephrologist. I have yet to find out if my medication will change.
I was formerly taking adcirca and tyvaso, kidney issues caused them
To put me on Adempas. This has been a year of medical decline, multiple surgeries and disappointments. I am having more difficulty breathing and more aches and pains. -
Hi Charlotte, My first breathing problems were getting dizzy, went to doctor 5-6 times and nothing. Oh, we lived at 8500′ but no one associated that to my problems. THEN SLEEP APNEA but no sleep study but put on oxygen at night. It did help me sleep better. Took 3 sleep studies to get my c-pap. Then I slipped and fell on ice and cracked 3 ribs. That caused me to go on full time oxygen at the elevation we lived. So we sold the ranch and bought a motor home. Wintered in lower elevations for 3 winters but in the third winter I started to need the oxygen 24/7. Now I get very short winded even using oxygen at 4. I had a sleep study done and now use a bi-pap. That really helps my sleep. I was formally diagnosed with PH last Feb. And I have lots of other things happening in/with my old body. Did this help? too long a story? good luck and be safe. Al in sunny Arizona
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We have a few new members who also have COPD so I thought I would bring this topic to the top of the list again.
Would any of our new members like to share their experience or as any questions about living with PH and COPD?
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Hi, I want to chime in about COPD. I remain rather quiet because when I first joined the group I realized that everyone has pH and it’s through no fault of their own. I have pah with COPD, and it’s because I smoked.
I am able to figure out that I am pretty far down the copd stages. I’ve really had rotten luck getting any good medical care. that’s a whole nother subject. I take the generic form of literas which is Amberstanton and adcirca is supposed to go with it, however my stomach wouldn’t tolerate it. so for about four or five years now I’ve just been on the amberstatin. Due to the severe shortness of breath that I’m having now the doctor has decided to add a pill called orenatrim. it’s been three and a half weeks and due to the bureaucracy of it all I am still waiting for the new pill after 3 and 1/2 Weeks. Due to the plague my doctor only sees three people in the office per day and so it’s phone consults. and it’s just a big old mess
Has anyone else had a problem getting decent medical Care? I know I’ve read a lot of you are in a good place in the country geographically where it sounds like you get really good medical care and you have a whole team of doctors working to make sure you get appropriate care and that’s really great I live in Colorado by the way so the elevation certainly doesn’t help COPD and pah. so I’ve done some serious editing otherwise this would be even much longer. so if you’re still here now and you read this thank you for reading my long post have a Merry Christmas.
Charlotte you are not alone in this group with copd.-
@kristine my son had idiopathic PAH. I’m sorry that smoking caused your COPD and PH, but please know, we are not here to judge. All we care about is how you are doing, how we can support you and how you can support us. Never hesitate to post a topic or comment on one. It is good to hear from you.
Have you looked at the PH Association “Find A Doctor” page? Maybe that will happen you find better PH care.
Thank you @jimi for making good points as usual and offering your support.
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COPD, along with any other issues like asthma, really adds to your breathing issues. COPD can be caused from drug use, 2nd hand smoke , atmospheric pollution, smoking. I think just living can cause it. I can understand your struggle in a high altitude, or flying or swimming. I am 10 years later struggling with COPD , asthma, bronchitis and PH. I had great relief on adcirca and Tyvasco, my Kidneys didn’t like it. My death certificate will state that I died from everything LOL.
Try relaxation techniques, a nebulizer, breathing slightly moist air. Most of all, keep your spirits up. The mind is a powerful medicine. Depression and anxiety will weaken you. There are great relief agencies, some drug manufacturers offer “speciality” drugs at low or no cost. If the covid vaccine works, maybe now they can use what they have learned in a very short research cycle to combat PH, Lupus, Cancer, MS, polluted air, and whatever is killing people. I thought that the “BIG” smoking settlement billions would be used to aid ex and current smokers, it only enriched the govt and political lobbyist.
I wish you luck and if I can assist you in navigating the medical mine-field,contact me.
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Colleen and Jim thank you for the words of support it’s greatly appreciated.
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I have Type 3 PH caused by COPD. I realized I had respiratory problems from smoking long before I was officially diagnosed.
My actual diagnosis came as a result of surgery report from my Bladder Cancer surgery 11 years ago. I always request copies of my tests and medical records. When reviewing the surgery report (which I had to ask for), I noticed the Anesthesiologist wrote “patient displays breathing patterns of severe pulmonary disease” None of my doctors had said anything about this! When I questioned them, they sheepishly offered to refer me to a Pulmonologist.
The Pulmonolgist gave me a Pulmonary Function Test and then told me I had very severe, stage 4 (sometimes called “end stage”) COPD, predominantly Emphysema.
This was somewhat ironic as my Urologist had told me a year previous, when my Bladder Cancer was first suspected, “More Bladder Cancer patients die of Emphysema than Bladder Cancer” Of Course, it’s been more than 10 years and I haven’t died of either – yet.
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@mendo-bruce I tensed up when I read how YOU had to ask about the PH mention in your records. Thank God you were so pro-active in your care. Excellent point you made about having to ask for the records. Sometimes people don’t know they can do that and you won’t get them unless you ask.
Being such a strong self-advocate has possibly helped you beat the odds that you have. Keep fighting for yourself! Has it been determined that you have both COPD and PH? How are you feeling for the most part? What do you enjoy doing?
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@colleensteele It was actually the COPD that my records were referring to. I didn’t develop PH until the COPD progressed even more. My PH is WHO group 3, which means it is caused by my COPD. I’m also type 3 which means all my activities (like walking to the next room) are impacted by the PH but I’m usually ok at rest. My Pulmonary pressure has gone from 35 in 2016 to 48 now.
Even though it is pure hell the entire time, I walk on the treadmill for 50 minutes continuously, 4 or 5 days per week. I used to walk to the local coffeeshop a few times a week, pre-covid, but now I only go out for Dr appointments and once or twice a month I walk to the bank machine (about 3 blocks away)
Because I’m ok at rest, I spend most of my time watching movies and tv online. I also play a lot of low stakes online poker. I usually play several twentyfive cent to one dollar buy-in poker tournaments every day. This helps keep my mind active and is mostly just for that and entertainment although I am up nearly a thousand dollars for the year!
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@mendo-bruce you sound very strong willed. I’m in awe of the exercise you manage every week. I can’t imagine how hard that must be. How do you feel afterward? Do you think the exercise is helping you?
Way to go on winning $1,000! Wow! It sounds like you have worked hard to find balance in your life – exercise, rest and keeping your mind active. What are some of your favorite TV shows?
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I am sure the only reason I have survived past all my doctors expectations and the normal survival rates is because of the exercise. (It seems to be a common denominator with most of those who have survived stage 4 COPD 10+ years, also many PH patients) I’m pretty wiped out for an hour or so after.
I like lots of different shows except reality shows (which I can not watch). I like Sci-fi, Game of Thrones and very off-beat shows (like Barry, Orphan Black, Fargo, Chuck, etc)
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