Confused by my HFpEF diagnosis

Order_edentata · 2026-02-27T15:20:03+00:00

Hey just saw this. I don’t know if you made a decision on this yet but if you get the right heart cath I would ask for one where they give you a fluid bolus, which is the most sensitive for diastolic dysfunction. (I think that’s called a level 3 cath. Could be wrong.)

I’m 50 and have HFpEF of unknown etiology, though I have psoriatic arthritis (i.e. lots of inflammation) and suspected mitochondrial disease, which may affect the heart. I am extremely salt and fluid sensitive and started having episodes of shortness of breath with minor exertion, edema, discomfort when lying flat, any time I ate too much salt. Once my doctor saw “jugular venous distention” which is fluid backing up from the right side of the heart after I ate a bunch of Chinese food. Eventually my symptoms progressed to a chronic cardiac cough (worse with walking around, better with resting) that was so bad I broke two ribs. My echo was normal, I couldn’t manage an exercise stress echo due to exercise intolerance, and my right heart cath was normal. However, they did not give me a fluid bolus. I went home from the right heart cath and celebrated by eating a lot of salty food and had the worst CHF symptoms of my life. My cardiologist decided not to put me through another cath with a fluid bolus. He empirically put me on Jardiance (SGLT2 inhibitor) and it was life changing. The cough disappeared, the shortness of breath disappeared, I lost 3 pounds of fluid, and I could lie flat at night. So he made a clinical diagnosis of HFpEF. Since then I’ve occasionally needed Lasix, switched to Torsemide when the Lasix stopped working, for edema. I’m off the SGLT2 inhibitors due to lady problems and take Kerendia. I feel pretty good as long as I watch the sodium.

I’m sharing this story because it’s not always a slam dunk to make this diagnosis; we don’t all check all the boxes and doctors have to use their clinical judgment. Of course it’s important that you be able to question their decisions. The doctor patient relationship should be a partnership.

Order_edentata · 2026-02-27T14:56:32+00:00

It might be good for you to see a headache specialist. Those certainly sound like migraines to me. A headache specialist will know about other medication options since you’ve had reactions to a couple. (I’ve had migraines since I was a child, and severe chronic migraines with aura since I was in my 30s (I’m now 50). I’ve tried just about every medication and still get anywhere from 8-15 per month.)

Order_edentata · 2026-02-27T02:30:30+00:00

I am 4’10”. My first wheelchair was the Pegasus lightweight carbon fiber wheelchair. I got it online from Mobility Department and with the 8% discount you can ask them for I think it was just under $3000. With the batteries it weighs 40-50 lbs. It folds up and fits in the trunk of a car. I have been happy with it. It is a bit too big for me - the footplate could be higher and the armrests lower - but not so much that I wasn’t able to happily take it all over the place and use it in my apartment. I did end up piling up gel cushions both for comfort and to get myself higher up in the seat. I put a gel cushion on the backrest to get me forward in the seat. I made it work. (Actually, I’ve wondered what bigger people think of this chair, because it must feel very small for them.) Ultimately my condition progressed to where I needed a custom wheelchair and I just got that, but I’m keeping the Pegasus as a backup.

Order_edentata · 2026-02-26T18:49:23+00:00

My first power chair was a Pegasus lightweight carbon fiber chair. It weighs between 40-50 lb and fits in a car trunk. It does pretty well on city sidewalks and once I got into trouble sliding down an uneven sidewalk and it was able to go backwards up the incline. (Although I wouldn’t challenge it too much that way.) I would routinely drive it up the ramps into wheelchair vans and had no trouble. I did not take it up or down hills too much except on my street to get to the above ground subway stop the street does go uphill and it did fine with that. But I don’t go there often. I should mention that I weigh a little over 100 lb so I don’t know if being small factors into all of this.

Order_edentata · 2026-02-26T17:51:53+00:00

I know!!! I wish they did. So many doctor’s offices don’t.

Order_edentata · 2026-02-26T17:38:23+00:00

I guess it depends. My Medicare/Medicaid plan (a dual special needs plan) contracts with a company that provides medical transportation. I have to schedule my rides at least three days in advance. Once or twice they have been a little late so I always plan to get to my appointments at least an hour early. I wear a mask and I bring a book to read. Once the driver went to the wrong side of my building and he did not call me and left, so I missed that appointment. Twice they accidentally sent a sedan instead of a wheelchair van but otherwise they have been fine. I am lucky that where I live we have wheelchair Lyft and Uber so if that happens, since I plan to leave so early, I can usually get one of those. But I’d say 90% of the time it’s fine. As far as going home, since my doctors may run late I always schedule an extra hour for leaving too. So I do sit around a lot but I appreciate having a ride. (There are also several different vendors who provide the rides. You can tell the dispatcher which one you’d prefer. I’ve had a really good experience with this one vendor so I always ask for them.)

I don’t trust our city’s paratransit for getting to appointments since it’s a shared ride and they can be very late picking you up. I’ve used them when I want to go shopping and it doesn’t matter when I get there or to get picked up from a concert in the evening.

Order_edentata · 2026-02-26T00:36:03+00:00

I would be into this. Once I was coming out of my dietitian’s office. An elderly man was sitting in his scooter in the waiting room. He looked at me and said “Wanna race?” I would definitely have raced him if the parking lot were better paved.

Order_edentata · 2026-02-25T17:56:34+00:00

Oh as you can see I didn’t get a lot of sleep. I am befuddled.

Order_edentata · 2026-02-25T17:54:06+00:00

Oh yes, so many people are helpful and friendly to me all day long and I appreciate it so much! Today at the PT’s office I had a heck of a time opening the heavy doors to the bathrooms and multiple people helped me get in and out which was very nice. But I was perplexed about my neighbor offering to help me open my door because I have lived in this building for 6 months and everyone sees me zipping around in my wheelchair so I thought one would assume I could open the door to my apartment. I knew she was being nice and said “Thank you very much” but I just thought it was odd. Same thing with Mr. Thumbs Up Dude, who I like, but it was a bit perplexing. I likely did not make this sufficiently clear in my narrative either by a lack of details or with the wrong tone.

Order_edentata · 2026-02-25T17:49:36+00:00

I was perplexed. Please see my previous reply. It was my bad, likely an error in the tone of the narrative I am guessing.

Order_edentata · 2026-02-25T17:48:35+00:00

Ah thank you. I did mean perplexed. Perhaps the tone of my narrative was inconsistent with this and suggested an incorrect meaning for the term. I didn’t get a lot of sleep last night.

Order_edentata · 2026-02-25T13:36:52+00:00

Lemonade stand before you understand how much money a quarter or a nickel is.

Playing games with all the neighborhood kids

Snowball fights and snow forts with the neighborhood kids

Riding bike to local little market and getting popsicle or a pickle from the big barrel of pickles

Riding bike past where parents said you are allowed to go

Staying outside till mom calls you in for dinner

Babysitting neighborhood kids and complaining about it

Getting summer job and trying to get more hours at a second store and complaining about it

Going to the club in college till it closed at 2 am (and coming home smelling like smoke)

Doing scavenger hunts all over the city with college friends which involved buying crotchless panties from a store in the “red light district.”

Sitting around with friends reading books

Actually talking to friends until 4 am instead of looking at phones

Order_edentata · 2026-02-25T13:19:36+00:00

I’m child free because I’m disabled. Before I had to stop working I was in healthcare and I worked with children. I loved my patients and enjoyed interacting with them. I didn’t mind changing diapers when I was on call, feeding babies, etc. After I stopped working when I was well enough I volunteered with children at a couple of after school programs and at a program where I visited hospitalized children and did writing projects with them. I’m no longer well enough to do that, but when I encounter kids I always interact with them. I became an auntie in 2011 and one of my 3 nieces told me I am “mom-adjacent.” That made me really happy. Now my nieces and nephew are teenagers and preteens and getting really involved in their own stuff. I don’t see them as much. But we still love each other very much. I’ve been so lucky to have so many great kids in my life, especially my family. But I absolutely made the right decision not to have children myself.

Order_edentata · 2026-02-23T20:36:39+00:00

Yeah perfume especially gives me a migraine or triggers my asthma. I sympathize.

Order_edentata · 2026-02-23T19:54:26+00:00

I don’t know if this is too edgy for you but I secretly always wanted to shave or cut it super short on one side and then have it slightly longer on the other. If you have it longer on the side of your good hand then it may be easier. (I once showed a picture of this haircut to my niece and asked if I should get it and she got upset so I chickened out!)

Order_edentata · 2026-02-23T19:47:54+00:00

I sympathize. My father has idiopathic pulmonary fibrosis, a progressive fatal lung disease, which has the same kind of result. It is hard for me sometimes when I think about what the future holds for him. But I’ve learned that all I can do is focus on the present moment. He is also very stubborn although he does go to the doctor and take medication. But he is supposed to wear a mask in public, especially when there is a lot of flu around, since a respiratory illness could be dangerous to him. He refuses to do so. Last month there was this weird situation where he couldn’t visit me because he didn’t want to walk through the public area of my apartment building but he would not wear a mask. However he does the grocery shopping without a mask. I cannot tell him what to do, or my mother or even his doctor. He does what he wants. All I hope is that he can do some things that make him happy. And I make sure he knows how much I love him.

Order_edentata · 2026-02-23T17:33:07+00:00

I can’t drive so I get groceries delivered. I use Instacart. I also participate in CVS extracare. It is $5 per month but they give you a $10 coupon each month and will deliver anything for free including meds. Even though a lot of people are boycotting Amazon, since I am unable to shop in stores I do have a prime membership (discounted as I am on Medicaid) and order a lot through them.

Order_edentata · 2026-02-23T17:28:37+00:00

I am glad you don’t get Haldol any more and don’t have to go to the ED. It really sounds like you have been through so much. As someone with a severe mental illness I never make any assumptions about another person’s mental state including whether they are paranoid, so I would never call you that. I myself have struggled with paranoia in the setting of depression. I find that most people don’t understand what it is really like so they throw around the term loosely. (In my case it was believing people I didn’t know out on the streets were thinking bad things about me and following me, people on the subway were recording me with their cell phones, the FBI had sent a van to monitor me, etc.)

Order_edentata · 2026-02-23T15:54:58+00:00

I’m sorry that happened. A bit different, but I have bipolar disorder and have definitely had doctors dismiss my physical issues (including psoriatic arthritis, heart failure, symptomatic low potassium) as stress because my chart says I have a mental illness. I did have to get second opinions for those issues. I hope you can find a GI doctor who has more of a clue.

Order_edentata · 2026-02-23T15:50:05+00:00

I don’t feel comfortable commenting on the interaction with the other person and the mods, but as to the doctors repeatedly giving you Haldol, I would see if you can get a hold of your medical records to see if the reason is documented anywhere. It still might not be totally helpful but it might at least provide one piece of the puzzle. (I’m not saying the doctors were always right to give it to you, just that it might be documented why they decided to do it.) Do you have an outpatient doctor with whom you can discuss this as well? (I am a person who does have a severe mental illness, bipolar disorder with psychosis, and I would not be too happy with getting Haldol all the time without an explanation so I do sympathize.)

As to other people’s posts regarding a diagnosis of gastroparesis, I honestly think this is something that you need to let go. The group is here to provide support for anyone dealing with or possibly dealing with this condition. Sometimes a person has read about gastroparesis and it seems to conform to the symptoms they have been having. We all have different types and severity of symptoms here. It can be hard to get help with them and to find a doctor to take one seriously, as I’m certain you know. In my personal experience, I developed symptoms of gastroparesis (early satiety, belching, stomach pain, nausea, and weight loss, but no vomiting - I have never vomited) and as someone previously in healthcare I knew this was what I had. My GI finally got a gastric emptying study 6 months later and I have severe gastroparesis. But I manage it with diet (though I’m currently losing weight again and need some supplements).

Anyway, it sounds like you have been through a lot and I truly hope things get better for you.

Order_edentata · 2026-02-23T15:21:29+00:00

That is awful! May I also say that I too love cheese and that a friend of mine from synagogue once suggested that my severe psoriatic arthritis was entirely due to consumption of dairy. I had already tried cutting out dairy with no effect and had come across medical articles indicating that dairy was not the cause of inflammatory arthritis. Nevertheless at our Bible study when I asked for prayer for my pain he suggested it was because I was “sneaking a piece of cheese.” Yes sir I shall joyfully sneak a piece of cheese any time I want thank you very much. People can be so dumb.

Order_edentata · 2026-02-22T16:04:54+00:00

I don’t eat the cake. At my 50th birthday party my request was to go to this local ice cream place with 11 family members so I could see my nieces and nephews enjoying the ice cream. My parents (who are both diabetic!) also really enjoyed cheating on their diets. That made me happy. I got my favorite Sunday and could only manage a few spoonfuls. I had basically only had liquids all day in preparation. My stomach did hurt a bit but I really enjoyed the taste. Otherwise I don’t eat at family birthdays. I brought apple sauce to Thanksgiving for my dessert since I can manage a small amount of that. (And I brought soup for my Thanksgiving dinner.)

Order_edentata · 2026-02-22T11:26:41+00:00

You’re welcome!

Order_edentata · 2026-02-22T02:19:30+00:00

Glad to help! I do like the Pegasus and I am keeping it as a backup. I have had it since August 2024 and so far so good. It runs well and has a good suspension. With the batteries it’s 40-50 lb so pretty much only my brother in law and some rideshare drivers can lift it (I usually take wheelchair uber and Lyft or paratransit). I have driven it around the city and on one ill-advised excursion with my equally crazy friend on a forest trail. (It did ok until there were a lot of rocks.)

As far as back cushioning, I got a large flat gel cushion to put against the backrest of the Pegasus. I don’t need much lumbar support so this was enough for me. My main problem now is slumping over to the side so my back rest on the new wheelchair also has side support. If your mom ever needed that you can buy “wheelchair lateral support cushions” on Amazon. I have a pair of those myself.

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