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Who Has PH Along With Heart Conditions/ Heart Disease?
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Just reading the forum articles and ran across the one regarding having heart issues along with PH. I read with interest the posts and wow, can I relate! I didn’t join this site until early 2023. But I too, have heart issues and PH, and have often wondered which came first; they are so intertwined. I have late effects of radiation treatments, and know it affected my heart (and valves), lungs, spine, etc. I suspect the heart valve disease caused the PH.
My “ongoing health issues” (as stated on my chart) are: HR with preserved EF, paroxysmal A fib, A flutter, mitral annular calcification, mitral regurgitation and stenosis, sinus bradycardia, tricuspid regurgitation, CAD, TAVR (aortic valve replacement) pulmonary HTN, bilateral plural effusions (small), hypothyroidism, and history of Hodgkins Lymphoma. I am on multiple heart meds and am starting a clinical trial to see if I am a candidate for mitral valve replacement, and hoping my PH pressure will not hinder this.
Yes, it is a lot to handle, but it seems that, as noted in the posts above, we take it in stride as best we can. My win is that I have stopped pretending with myself and started to listen to my body. That’s the only way I make it. Some days are better, but some, not so much. (Those are the crappy days.) I also have chronic back issues that causes pain on some days, from severe scoliosis and lumbar degenerative disease.
Then there’s the mental and emotional side of things…. Here’s to all of us who struggle and juggle health problems – prayers and good days
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I wonder how many of us on the PH site have gotten here by way a trip through Cancerland and radiation therapy?
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Yes, @brendad53, I wonder that too. Radiation treatments are harsh on our bodies at the time, but I feel even more so with late effects. I also post some on heart valve surgery and it is surprising how many heart patients on that site have these same issues stemming from past radiation treatments.
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It is said that heart disease is the #1 killer in the U.S., followed by cancer at the #2 spot.
Makes you wonder if heart disease WOULD be the #1 killer without cancer treatment sending it so many extra patients above and beyond those who would have gotten heart disease anyway.
Maybe heart disease is #1 because it’s actually heart disease AND long-term survivors of cancer treatment who make up its population?
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This question is so on target. I’m new and have 2 different cardiologists within the same group, a pulmonologist and see a doc at a PH clinic associated with a university, plus a PCP and a gastroenterologist. I still do not know the cause of my PH. I was diagnosed in 2018, spent 4 days in hospital for SOB diagnosed with PH based on CT scan, echo and history. Sent home with home O2 continuously at 2L, no meds and f/u with cardio & pulm. I saw pulm hospital recommended at d/c. I asked for a heart cath to confirm dx & he said no. Initial pulm doc saw me for 1 visit, then PA-C saw for 3 visits. Next thing pulm doc and PA leave practice to work as ICU hospitalists. PA said something interesting & I’ve never forgotten it. PA felt that my SOB probably had a congenital component since I was a twin born 2 months early, weighing 2lbs, 10oz, and pectus excavatum. My sats with activity would decrease to mid 80’s with O2 and return to mid to high 90’s. My twin died 1 month shy of our 1st birthday (in 1961) and I’d never seen her death certificate in my parents’ papers. I decided to write to the county where she died and request a copy. Her cause of death was listed as primary pulmonary HTN. I was shocked, neither of my parents ever said that’s what she passed from.
The heart problems I have now are a-fib, CHF, “age appro mild to mod” valve regurgitation-can’t remember which ones, EF 55-60 and pulm pressure of 40. I had a successful cardiac ablation for a-fib and placement of Watchman device, off blood thinners and taking EC low dose ASA. Taking Tadalafil 40mg a day without any improvement. Increasing O2 helps a bit with activities but I get so tired. I also have some balance, mobility and anxiety issues.
My care medical care seems to be a bit better since I now have Humana Advantage plan. During my initial diag period I had marketplace coverage following death of spouse. Market place insurance may have been the reason that I was told no to heart cath to confirm dx. I tried going back to work as an RN but just could not keep up and 3 months later dx of PTH.During ablation dr kept me in hospital overnight because they had trouble getting me off vent. A nurse assistant helped me to go the bathroom during the night and was irritated that it took me so long to catch my breath from a lying to sitting position to get out of bed. I called her on it and asked if she’d not seen the O2 tubing. The nurses only were at computer charting and giving meds. Only 1 nurse actually listened to my lungs. No one really paid attention fluid intake and output. What’s really wild is I used to be a cardiac & pulmonary rehab RN. I did outpatient monitored telemetry exercise and pulmonary rehab programs. Also, patients that were scheduled for open chest surgeries, I did their pre-op educations, in a private office on campus and gave a tour of the ICU to patients and their families. Being a patient has changed so much with new automation and technology. IMO, focus seems to be on computers and not on the patient. I ask questions and I’m sure viewed as difficult. Nurses are the worse patients.
Sorry so long. Felt good to write down my thoughts. Thanks for reading.-
Wow, @catygirl, what an impressive story you shared! Strange that you were a cardiac and rehab RN! Nurses are so much the worst patients. But I think it’s because, at times, we know more than those caring for us, and that’s sad and frightening!
Kudos to you for your efforts with self-advocacy! That makes a huge difference when we or someone else can advocate for us. Knowledge is power, my PHriend.
I bet, like me, you research everything before you agree on a treatment plan. Grateful that you thought to contact the county to find out the cause of death of your twin sister. I wonder why your parents wouldn’t tell you. Was it maybe that you were a healthy child for the most part? They never thought you would need that info.
Thanks for sharing your story. I know many will be inspired and also find it helpful.
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When my twin died dad was in school and my mom was 8 months pregnant with another set of twins. My sisters are 14 months younger. My parents always said that she was too small, and her lungs were underdeveloped. She lived almost a year.
In my time as a cardiac rehab RN I’d never had a patient with PH. Only had one patient that was a lung transplant and she did very well.
I’m glad they finally did a heart cath but I truly believe my insurance had something to do with MD reluctance. Insurance companies all too often dictate medical decisions instead of MD’s. -
Hi, @catygirl, insurance certainly impacts medical decisions as a patient for the last 18 and prior in my years of nursing, I saw this too often. It’s frustrating and unfortunate that many go undiagnosed with health conditions.
Like you, I never read about PH in nursing school. My daughter’s first did when she was working towards her nursing degree before she switched to a dietician. But still, so much needs to be changed in educating our HCPs. Having a transplant patientwhen shest you saw the positive side post-transplant when in nursing.
I’m sorry about your twin sister. But, I’m grateful you finally had an RHC and were given a diagnosis and treatment. Now, you found us and so happy you feel comfortable to share some of your experiences.
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Catherine, your story is remarkable, to me. I’m still trying to figure out the parameters of my PH, and the nature of whatever cardiac problems I have, and how to treat it all. Pulmonologist? Cardiologist? PCP? Just ignore the symptom(s) and see if they will go away?
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Holy Cow, Brenda. That’s the best suggestion I’ve seen for a while – ‘just ignore the symptoms and see if they’ll go away’ – could work, eh? Spent this morning in the garden trying to bin some prunings and do some more clearing up. Very satisfied with the results but I’m afraid I overdid it – felt very faint for a while. A quick sit-down and later an espresso coffee fixed it. If I’m going to faint I always try not to aim for a concrete path. LOL!
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Oh dear, @auntlizzie I guess fainting can also be a way to ignore symptoms? “Sorry, I was win La-La land…what symptoms?
It is nice to hear in what ways you enjoy being active. Just do take care. Avoid concrete at all costs!
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Oh, any symptoms. But no, I never ignore symptoms, even if the doctors tell me nothing’s wrong, when I know it is. I have a great cardio who listens to me and doesn’t stuff me full of Big Pharma products. He knows I am very sensitive to most meds. He is also a good listener and will guide me to the care I may need at any given time. Take care everyone and don’t ignore unusual symptoms. Cheers.
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Hey, Aunt Lizzie. The “ignore the symptoms” is an initial approach if the symptoms are not severe and if they are not indicative of any single thing. Sometimes I need to take a “wait and see” approach. Sometimes doctors want to wait and see when I’ve already been doing that for many months and have come to talk to them about what happened. THAT is frustrating!
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LOL, @auntlizzie! You are too funny. I am happy you listened to your body and took a break in the garden. I bet that Expresso helped. Does it affect your heart at all?
I have palpitations and tachycardia, so too much caffeine worsens it. But I do enjoy a little Expresso at times. Like you, my body is sensitive to meds- and Expresso. Hehe.
Enjoy a lovely weekend, my PHriend.
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Aunt Lizzie and Jen….perhaps it works with caffeine like it does with calories? Mama Bear pointed out that she keeps her cookies on the top of the refrigerator, and the calories jump out of the cookies and onto the floor before she can eat them. Maybe you need to keep your espresso makers on top of the fridge, as well?
Just a thought….
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I love it, @brendad53. I can see it now; Manny walks in and wonders WTH when everything I enjoy is on the top of our fridge! Hehe
Have a relaxing weekend, my PHriend!
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LOL, @brendad53, I don’t think I can fit my espresso maker that high. Maybe in a higher cabinet works so I could get “half-caff.” Do you think this could work, @mamabear007?
I doubt anything else will fit with my cookies and other junk on top of my fridge. Hehe. But love the idea…
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@jenc, if it works with calories, it should work with caffeine. 🤣
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Hehe, @mamabear007, that’s too funny. Manny bought a new mini fridge over the weekend. His beer and bubbly water took up too much space in my fridge. So, if I can get that expresso machine over there, all my mini Cokes are already on top of the mini-fridge now. LOL.
So ironic that he chose to buy a mini fridge while we were having this laugh. 😉
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What a thoughtful hubby! Taking care of your need to reduce your caffeine intake in such a sweet, non-nagging way! My ex- would just nag me. (That’s a significant reason why he’s an ex-.) 🙂
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LOL, @brendad53, you crack me up. Well, a good thing for Manny is that he is not nagging me about too much caffeine. Or else, he could be an ex like your ex-husband. Hehe.
He also knows nagging doesn’t work on me, so he has learned through the years.
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Hi Jen, Hi Brenda. In answer to whether caffeine affects my heart or not, I’d have to say very rarely. It’s more likely to affect my stomach with a bit of acid etc. The kids all chipped in and bought us a lovely barista-style coffee machine. I use the 2-cup thing but make a small one-cup coffee, so I guess that is a bit strong. But I also occasionally have a Turkish coffee – very small one. My cardio said that was OK if I didn’t get palpitations and that he liked Turkish coffee too. Other than real coffee I do drink instant, but the taste is never as good. As to putting anything on top of the fridge, do I see myself on a step ladder making an espresso? I don’t think so…As to calories, I’m not much of a sweet-eater, only chocolate. I do like Jam and have just made a couple of pots of lemony marmalade – Yum!
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Wow, your heart tolerates strong expresso and more caffeine than mine. Have you always enjoyed Turkish coffee?
OMG, lemony marmalade sounds like my “jam,” hehe. Do you need my address? My late grandmother made homemade jams every summer. My mom does a little, but none this year since she has stayed with my sisters. But my favorite flavors are blackberry and lemon, so yummy. My mouth is watering for some of your marmalade now.
So, now I know you enjoy DIY crafts and making homemade treats. Was this a family tradition you carried on?
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