I know this discussion was started 3 yrs ago, however seeing a few people have responded as recently as 5 month ago, I figured I should register and mentioned what happened to me, as it might be helpful to someone else. I live in Colorado, which is at a high elevation, but I've lived here almost my whole life. In March of 2015, I was in my late 40s, overweight with some knee problems but otherwise fairly healthy. I started to notice that I tired easy and then that when I walked a distance or exerted myself, I would get sick to my stomach. I went to my doctor several times and she prescribed some PPI for reflux. Eventually it got so I couldn't walk 50 feet from the couch to the bathroom or from the elevator to my desk at work without getting sick to my stomach, and automatically doing this coughing/gagging thing. Sometimes I would throw up but most the time, eventually the gagging would calm down and I would be okay, until I had to walk somewhere again.
I went back to my doctor but she was on vacation and the PA filling in really didn't want to deal with me, telling me to come back next week, he did write me a doctor's note to take off work and sent me to get some other diagnostics for my leg as it really hurt and i know I had a lot of edema. During that week of waiting until my doctor returned, I got a lot worse with my leg hurting so much I could barely stand it and I could barely move without a gagging fit. The morning before my appointment, I awoke with a swelling in my chest and right shoulder/neck, and called the office insisting on seeing someone today.
When a doctor I had never met before saw me, he immediately told the nurse to put an oxymeter on my finger and test my oxygen. I don't know the reading but he said he was calling an ambulance as I needed to get to the ER right away and didn't want us driving there. I noticed my weight was 10 pounds heavier than last week and I was up considerably since I got sick. So the EMTs carried me out, gave my oxygen and transported me to the ER. There they did a bunch of tests and admitted me with heart, kidney and lung failure. I was in the hospital for 5 days, they took lots of tests and got almost 40 pounds of water off me with Lasix. I was on disability for 3 months from work, meanwhile going to doctors daily and having lots of tests and I was on supplemental oxygen all the time.
I had a sleep study and was diagnosed with really bad sleep apnea and was told I had to get a CPAP. It took months to get the sleep study, then the CPAC and then also a portal oxygen concentrator; so that I didn't have to use canisters of O2 and then I was able to go back to work. My kidneys seemed to have recovered almost immediately, and I've had periodic heart ultrasounds, one due soon. Until now at least my heart is enlarged but there was no change; so that's reasonably good. I was diagnosed with pulmonary hypertension caused by sleep apnea, there are no drugs or procedures they could do to help me improved but using the CPAP regularly for at least 4 hrs a day should eventually get me off the supplemental oxygen. Apparently, having sleep apnea causes the blood vessels in my lungs to constrict and thicken and that affects the functioning of the heart and lungs.
The stomach upset and gagging I was experiencing was related to tachycardia (heart attack symptoms are frequently felt as stomach trouble in women). My doctor weighted me, took my temperature and blood pressure at every visit but never once tested my oxygen saturation until I saw a doctor I didn't know and he sent me to the ER. I never felt faint, had chest pains or anything else and I guess I really didn't notice lack of oxygen from living at this elevation all this time. The one thing I did notice was over time before I was diagnosed I started hearing my heart beat in my left ear all the time. It was something I had complained about to my doctor and other specialists for quite sometime and every one just said "that was interesting" but found no problem. After I was diagnosed I read up on pulmonary hypertension and a sign of it is hearing one's heart beat constantly in their ear.
So 2.5 yrs later, I would love to say I was totally off the portal oxygen concentrator, but I'm not completely. I did get to being able to not use oxygen when I was sitting down, after about a year and trying hard to use my CPAP for at least 4 hrs a night. However, I still need oxygen to do anything more than a few dozen steps and I do use it at night; I have a home oxygen concentrator as well. In fact I frequently use it at home most of the time, as I never know when I will be climbing stairs, taking a shower or otherwise really need it and having more than 88% oxygen saturation is actually good for me. It is nice not to need supplemental oxygen out in public when sitting or taking short walks from one place to another and awkward carrying a 10 pound portal concentrator when walking. However, I need it to get around and I keep working at using my CPAP to hopefully get off supplemental oxygen completely some day soon.
Losing some weight, building endurance and even moving to a lower elevation are all things that can help me but using the CPAP all the time is the main key to getting better and off supplemental oxygen completely. The problem is I can't use it all the time. I used to be addicted to Afrin type nasal sprays and that made things difficult but I recently got off them completely and can breath well without them. I do have a lot of claustrophobia with using the CPAP and I have one of the best (smallest) head gears for that issue and can take sleeping pills if needed. It's just that during my work week, I have so little time to get some sleep, I can't really mess around with using the CPAP. Plus I think I have central sleep apnea instead or in addition to OSA, as even when using the CPAP I seem to have had apnea episodes. I also never wake from using the CPAP feeling better, I always feel worse than if I had slept without it.
I know everyone says that once you get used to it, a CPAP will change your life, as you will feel so much better. However, I''ve struggled for 2.5 yrs trying to use it off and on and I'm more miserable with it. I will be going to a new lung doctor at the end of the month, so hopefully things might improve for me. Recently my partner and I have been sick with a cold, flu or something and have both had really awful coughs for a long time. I haven't' been able to wear my CPAP at all with the coughing and it's reduced my oxygen saturation some. I got rid of the congestion fast but have had a dry, hacking cough for a few weeks, my partner has had it about twice as long as that and his doctor said it was bronchitis; nothing to do except what we've both been doing with expectorants, tea/honey, rest/time, etc. Anyways, I still have a pretty good life and hope to get off oxygen someday soon, before modern technology and diagnostics 1 out of 3 people with pulmonary hypertension died each year. So having pulmonary hypertension was a 1 to 3 yr death sentence, fortunately today with tests, technology, CPAP and supplemental oxygen, that isn't the case.
However, the reason I wrote all this was to hopefully let a few people know about pulmonary hypertension and sleep apnea. My former doctor at least, as well as probably many other doctors, never even tested my oxygen saturation and we all live at 6,000+ ft elevation and did take other vitals each time. I used to wake with killer headaches, which was because of the apnea. I rarely have them anymore, even w/o the CPAP and using supplemental oxygen. For years they thought the headaches were due to bruxism and I had different dental devices but nothing worked. So if you have lots of coughing, are feeling tired a lot, might have some edema, have your doctor test your oxygen saturation at your next visit or buy an oxymeter at a drugs store (they are about $30). Also consider getting a sleep study done. About 5 yrs before getting ill, my blood pressure suddenly started to get high, after being perfect all my life. I was treated with meds and got it under control but there seemed to be no cause beyond age so a different doctor suggested a sleep study, at the time I turned him down. Hopefully the people who posted recently get a diagnosis, treatment and get better, and hopefully the information on this page will help someone some day.