Pulmonary hypertension

Posted by karen216 @karen216, Fri, Apr 26 9:51am

Hello. My story is very lengthy, but symptoms and tests finally gave a diagnosis to my SOB. I was recently diagnosed in November 2018 with pulmonary hypertension that hit me like a ton of bricks last summer following an exacerbation of COPD, only the second one I've had in 9 years! In July 2018, after the COPD exacerbation when SOB never went away and worsened by the week and I began having palpitations almost daily at rest, I called my pulmonary doctor who ordered PFTs (which I'd just had done 10 months prior, as I'm a regular patient seen for COPD and treated for sleep apnea since 2006), but the tests did not show any signs of worsening(?) I also saw my cardiovascular doctor who ordered a 48-hour Holter monitor, but don't you know during that time the palpitations did not occur, until the monitor was discontinued and they returned and continue date!😕 My SOB continued and I was literally unable to go out at all in the summer heat or do anything, including walking in or out of my home without feeling completely breathless, it got worse by the day. Finally October came and time for my 3-month pulmonary visit. The usual walk down the short hall and back with a pulse oxemitry device on my finger began loudly buzzing every step of the way, bringing my doctor and the respiratory therapist out of from their patient visits to see who it was. My oxygen levels dropped to 81-82 each step. My pulmonologist wouldn't let me go home without him making arrangements for admission to the hospital to find out what was going on with me. He'd made a call to my cardio doctor as well, as I'm sure he must have had a suspicion of what it could be. My mistake was insisting on going to the sister hospital closer to my home that the pulmonologist did not physically work in. As a result, a 2-night stay and multiple tests (xrays, CT scans, tons of bloodwork) did not reveal ANY reason for SOB! Pulmonary doctor there said it was a cardio problem, the cardio said it was a pulmonary problem. I was not placed on oxygen there because at test I did not show signs of needing it. Respiratory performed only ONE monitored walk with me around the unit hours before discharge and my O2 levels hovered barely above 90 and so I did not require home oxygen. Three days later I went back to my pulmonologist office, where he gently voiced his anger with me not going to the "home" hospital so that he would have intervened in my care personally there and consulted with my cardiologist to have a catheterization done. With my permission, he called my cardio doctor and asked that I might be seen immediately for consult and consideration for a right-to-left catheterization be done. In addition, he ordered immediate home oxygen concentrator be delivered to me at home and I use it to date. I have a portable unit I must use whenever I go out. It's one of those nice concentrators carried in a shoulder bag (about 5#). I do not require oxygen while sitting, only walking or exerting myself, although I also use it always in eve watching TV and I connect the oxygen tubing to my CPAP machine while sleeping. I use 2 liters of oxygen.

Long story shorter (a little bit😉) the right-to-left catheterization performed on me did in fact confirm pulmonary hypertension. I was devastated and I'm still loaded with both anger and sadness that my once very productive life had been completely altered, but at least I had a diagnosis. I am a former smoker, quitting only 5.5 years ago, but both my pulmonary and cardiac doctors have assured me my PH is NOT smoking or from COPD, but from a "stiffening and narrowing" of the pulmonary artery slowing blood/oxygen flow to the heart, as evidenced only by cardiac catheterization that I have twice had done since November.

This long story about my SOB and it's diagnosis I shared because I had fooled the PFT tests and the hospital diagnostic tests that had been performed and they showed NO reason for my SOB. I'm only wondering if perhaps your physicians (pulmonary doctor) should consider catheterization to rule out possibility of pulmonary hypertension. It was a hidden diagnosis for me, but I can't walk down my hall at home or up my basement steps without total SOB. I've gone thru 18 visits with pulmonary rehab to learn about dealing with it and worked on equipment (with oxygen) and I'm going to begin going to the pulm/cardiac gym at the hospital to continue working on endurance. This is a really hard, new lifestyle for me. I am 63 and 100 pounds overweight and also insulin resistant/metabolic syndrome so weight loss is extremely difficult for me; however, I must try to improve my lifestyle somehow. I don't know options other than my current oxygen and Lasix treatment for now, unless (per my cardio doctor) I come to the Mayo or University of MI Pulmonary Hypertension specialty clinics (the later of which my pulm doctor has discussed my case with for treatment purposes and that treatment is pursued at this time) I have Factor V and history of DVT in 2011. I am a lifetime Coumadin user. Is be scared for surgery, a death outcome. I'm really scared of my future now. I am mom to 20-year old twins who are my heart and soul. I really don't know next steps.

I hope that you all find a reason for your SOB soon!

Well, it's good to have a diagnosis that finally makes sense. What a trial you have had/are having. JI"m glad there is some help for you even if you have to change your lifestyle. Mayo Clinic recommends a really good diet plan–I don't work for Mayo Clinic–so am not touting them for anything other than the fact it seems to work for many. I'm sure as time passes you will gain more endurance and strength. Keep us posted. You will be in my thoughts and prayers.

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@karen216– Welcome to Mayo Connect and good morning. I can only imagine your shock when you found out about your pulmonary hypertension. It's enough to have COPD (I have it too) but to add another disease on top of it that makes breathing even more difficult is a song that isn't easy to hear. Until my first lung cancer in 2017 when I saw a pulmonologist for the first time I had no idea that had anything like COPD. I knew that I must have had emphysema because every smoker has that. but COPD- what was that? What choices have you and your doctors made to treat this?
https://phassociation.org/patients/treatments/
https://www.mayoclinic.org/diseases-conditions/pulmonary-hypertension/symptoms-causes/syc-20350697

Liked by alamogal635

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I understand the frustration of not having a diagnosis for SOB. It is frustrating when pulmonary function tests are normal, pulse oximeter is normal (might occur because I am usually sitting), heart stress test is normal etc. Only indication that something "might" be up has been repeated echocardiograms that indicate mild to moderate pulmonary hypertension (3 out of 4 showed possible PH, the 3rd could not read the lung areas that would estimate pulmonary pressures). Heart and lung docs are just sitting on info, so I made an appointment with the closest certified pulmonary hypertension center (3 hours away). I will have a right heart catheterization in two weeks. The doctor was noncommittal, but I got the impression he is not convinced the problem is PH. This would be good except that I still won't have an explanation for SOB. It is a shame that I have to drive three hours when our hospital has a very nice heart and vascular center. If only my own doctors would have scheduled it…sigh. Well, at least I will know for sure in 2 weeks.

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I'm so sorry you had to trump your doctors to move forward for a right-to-left catheterization, which is what finally confirmed what my pulmonologist thought the day he sent me from his office to the ER. Problem was, I went to the "sister" hospital closest to my house and not the one he preferred for me to be admitted, so that he could be there to encourage a catheterization. I ended up staying 2 nights, undergoing blood tests, CT lung scans, chest xray, echocardiogram all tests not showing concern for PH and I was sent home same condition I went in! The following week at my pulmonology visit, my doctor called my cardiovascular doctor to ask I be consulted to have a Cath. It all happened the following week and I was confirmed PH. My treatment is Lasix and oxygen therapy at this point. I'm so glad my pulm doctor was proactive! I've been with him 12.5 years so he knows me well.

Liked by kakas

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Well I received some answers with yesterday's heart cath, but still some investigating to be done. I do not have PH. My mean values looked good. My cardiac output looked good. However, he did find something. It is a bit disconcerting when you hear, "let's do that again" and "one more time" followed by your doctor saying "interesting" next to your ear. (I was very awake and he went through my neck.)

I have a significant step up in oxygen saturation which indicate a high likelihood of left to right shunting. He said this cardiopulmonary could definitely cause my symptoms.

I also had a bubble echocardiogram which was negative (that was surprising considering what he found in the heart cath.) Additionally, he ordered a heart MRI. I will talk with him next week about that.

This is good news that it is not PH (my husband has it) but confusing about cause for inappropriate step up in oxygen on side that should be oxygen poor. At least we might be on the right track to discovering the missing puzzle piece!

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Does any one here have pulmonary hypertension?

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Hi @melaten and welcome to Connect. You may have noticed I moved your post to this existing discussion on pulmonary hypertension so that you can connect with others who have similar experiences such as @kakas and @karen216. Simply click VIEW & REPLY in your email notification to get to your post.

@melaten how long have you had pulmonary hypertension? What are your current symptoms?

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