Is there a potential fix for this (medical)?

Parent Cafe
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@eastcoascrazy I fully understand our own experiences coloring what we see/read. My mind did that too when I wrote about “what’s the worst that can happen” with my mind considering it like we do at school and some readers thinking more sinister thoughts. There’s only so much that can be conveyed with typing and not having similar backgrounds - or knowing each other’s background.

Getting this one back to it’s original thought, it was merely to see if it was worth it to continue on with tests and appts and all sorts of stuff I don’t particularly care for assuming the doctor is correct with his guess. If there’s no fix, I’m quite ok skipping all that and just figuring out how to live with it. It’s what I’ve been doing the past few years thinking we knew the cause and it’s what I do with the other issues that they tell me are due to radiation. No event yet has been disrupted - not one. Even when I felt bad from Petra’s exertion, nothing got cut from the rest of our trip nor did I even share with others to get them worried or feeling we should cut back. Bad days just happen sometimes. That’s life. Bad days make one appreciate the good days more.

AND, having read this thread myself, I get why the doctor wants to do his version of cardiac testing - “just in case.” I am planning on proceeding with that - even called to ask if the stress echo would be better or not (he doesn’t feel it’s needed at this time). Doing more than that is pretty much self-diagnosing via the internet (vs just asking for info) and seems unnecessary at this time considering everything else seems just fine. Even the episodes that happened fit the pattern of what’s happened before - what got me to go to the doctor in the first place last Nov (Jordan trip was in Oct). When I did walk around a little to see if it would get worse, essentially trying to give myself a reason to go to the ER, it didn’t. It improved. Nrdsb gave some ideas for why it might not get worse, but nothing that seems super imperative to get checked out immediately (esp without current chest pains) and miss out on graduation. It’s all enough that I will continue on with the doctor’s Plan A though.

I seriously don’t think anyone, esp me, is going to mess up graduation. I’m very used to going through bad times or bad days and no one has a clue. Only once did my co-workers even pick up on it.

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I hope that if you do feel bad during graduation or at any other time, you tell someone, rather than staying silent for fear of being a “bother” (put in quotation marks because it is not a bother to those you love to help you in times of need).

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You went to Petra. I climbed Masada. I had a 100% block on the LAD (the widowmaker) three weeks later. I’d had a primary doc, a cardiologist and my onc all run various tests in the six weeks before and checked out fine. No obvious “I’m having a heart attack” symptoms until I fell on to the kitchen floor and by the grace of G-d, my 20 yo son was home from college and knew CPR. He will deny it as long as he lives, but he still deals with that trauma.

Today is the 16th anniversary of my diagnosis of leukemia. Good thing I ignored the rheumatologist who thought I had fibromyalgia and the primary who blew off my fatigue, and dragged my tail in to demand bloodwork. My then-10 & 11 yo sons got to grow up with a mom.

Waiting to see what is actually going on and thinking that with a diagnosis, it’s curable, is magical thinking. By the time some things are diagnosed, it’s already too late. My sons barely remember a time I wasn’t sick. If being proactive about my health saves them some anguish, I’m darned well doing it.

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I used English to ask for vascular testing a couple of years ago - at Johns Hopkins - and was told no. This was after I was continuing appts to try to get/allow them to find answers and had found a plausible explanation for vascular on the internet. Their conclusion was stress, radiation, and who knows what other word they might use. Hypochondriac comes to mind. “Stay off the internet.” I could have had whatever stress reducing drugs I wanted, but instead opted just to discontinue the dr appts. That definitely relieved the stress (no doubt stress was there at that time - depression too considering they weren’t interested in helping and I am not used to not being in control). It would have been great if stopping the appts had also relieved the rest, but such is life.

Radiation is still a possibility.

If something is more majorly wrong, it’s not like I can do anything about it if they don’t agree. That’s the way the system around here works. My mom’s “stress” did turn into Stage IV cancer after it was also a 95% blockage in one of her arteries. (Fixed the artery, then found the cancer after more “stress” diagnoses.) Her doctor believes her now, but definitely did not before she almost died from low hemoglobin. If he had believed her earlier, I’m not sure what stage they might have caught things at. (Totally different doctors and systems since she lives in northern NY.)

Fortunately, I can monitor basic blood numbers via work twice per year (all except LDL and total cholesterol are fine), but I’m fully aware that if the doctors are wrong with the system we have, we’re screwed. It’s why I don’t care for the system. Other than my mom’s doctor - arrogant jerk that he is - I’ve yet to meet a doctor I don’t like on a personal/professional level. They aren’t always superhuman at knowing what’s up and they can’t know everyone’s life - just as folks on here don’t. Some things are textbook and some aren’t. This is the way the real world works.

I refuse to cry or take a man with me so they can listen to him or pretend some things are wrong when they aren’t or anything else suggested to be taken more seriously. It’s just who I am. Others are different. That’s ok. I’m not judging. But my basic “exact wording” requests (verbal and written) got nowhere.

And with all that, radiation could still be a plausible answer. If it’s not, hopefully their tests will show something and they’ll go from there.

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It’s not a sign of weakness to take a person with you to a medical appointment. When there’s a lot of questions and answers and information being thrown around, it’s really useful to have another set of ears.

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Taking your spouse isn’t weakness.
Docs only know what modern science knows.
GERD can cause angina-like pain, sometimes from exertion, sometimes lasting.

But here’s the thing. You care and you don’t care. You monitor your vitals but say you aren’t worried. You say, if death comes, fine. But you monitor again…via a phone.You trust med sci and distrust at the same time. But you say, 'Really, I’m not obsessed. But…" and you check your BO again.

Pick one path. You’re not worried, cease tracking vitals via an app, get on a routine aerobic exercise plan, eat a recommended diet for our age group, listen to docs, heed their advice and stay calm and detached in the interim between visits or tests.

Or, you are concerned, you do press on, you get earlier appts, take an advocate along , don’t dismiss lasting chest pains, agree decisively to go to ER if needed. And so on.

Random success with hiking or non-aerobic chores isn’t a good way to judge.

I get that you’re a little frustrated with some of us, but some are holding up a mirror, telling how it sounds.

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There is a doctor at John Hopkins, Peter Rowe, who specializes in dysautonomia, if that is what you have. He was very helpful to me and my family, communicating by email with us and our MDs. We do have varying degrees of it in our family and have had varying success improving it.

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I don’t think anyone is suggesting you do that. But having someone who cares with you, if that person can listen and put things together can be very helpful. Sometimes it’s easier for them to listen and ask questions, because it’s not happening to them. Having a concerned, educated advocate is very useful. I know I have been my husband’s best advocate, because sometimes the doctors miss things, they are wrong, they can’t put it all together…but I know the entire story, remember the tests he had, even more than he does sometimes.

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I do accompany H to key medical appts and comes to some if mine. Extra ears and eyes and memories are helpful in working with our doctors. We have also accompanied our kids to major medical appts for the same reason.

Of all of us, I generally am the best overall historian but each of us adds details that sometimes might not otherwise be mentioned as they are and help provide a better picture for the doctors.

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True in that context, and dh did go with me to all BT appointments and most of radiation. I also go with my mom to some of her appts. But none of us accompany the other when going to basic routine appts. We have this belief that one ought to be able to have private time with a doctor if they want it - and we have the belief that doctors ought to be able to believe the person seeing them without needing “a man” to confirm it.

No one I know in my circles (except for my severe Alzheimer’s MIL) has someone accompany them to routine appts. If others want to do that differently, go for it.

@lookingforward You are aware that you’re reading a thread dedicated to this topic, no? It’s not my whole life and all I do. Yes, there are health issues I have. Yes, there are occasionally times when change or figuring things out is possible - something comes up whether that’s DNA test possibilities or a different suggestion to consider. In my circles, it’s perfectly normal in such situations to do research and ask others for thoughts when trying to make decisions or reach conclusions during such times.

At school I have a young lad (senior) whose mother was just diagnosed with BC. I suppose in your world I should tell him to just sit back and wait for dr appts while doing nothing. In reality we discussed cancer, real life, some helpful websites, and I introduced him to a coworker who is a BC survivor (a teacher he hadn’t had) so he could get more solid info and have folks to talk with. I gather that’s “an obsession” for a while as he’s gathering info. Such is life. It’s a way of living I have no intention of changing - esp since just “going along with the flow” and an “expert” eons ago was such a wrong decision.

In case you haven’t read far enough (happens with skimming threads as I think we all do at times), I have made a decision. I’ve mentioned it in more than one post. The thread was about getting info to make that decision. That happened.

Today I’m off to school again. My “wishy washy” self who had committed to making last Friday my last day was too tempted by a chance to hang out with many of “my” seniors today (kids I had in my last full time position two years ago). Besides… the alternative is more house cleaning. This way I have an excuse for not having gotten it all done.

I can guarantee my “obsession” won’t come up one bit at school unless I’m on the computer due to my kids having other things they’re doing (some have an AP test I think) and I get bored. Then the “obsession” will be limited to this thread - where it’s rather on topic. Other “obsessions” will come with checking weather for graduation this weekend and listening to “my” kids discuss their plans and dreams. I should see my “cancer” lad again too and will see how he’s been doing with his “obsession.” Then I’ll see how his college plans are going along. He was fortunate enough to get a practical full ride (due to need based aid) at a school not known for being so good with it. I’m thrilled. (I wrote one of his LORs. He is very deserving.)

@Himom - thanks for the name. If it ends up being needed that could be quite helpful. JH or Hershey are the two closest major options.

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@Creekland yes, this is about your health. Perhaps you misread my post.

Yes, not unusual to research. But you present a dichotomy. On one side, concerned, seeming to check vitals and symptoms routinely, etc. On the other, seeming unconcerned, dismissing death (or the potential for a disabling event,) ER, etc. A confusing picture.

Please remember, your audience includes not just readers, but people who suffered medical crises or long-term life changes. And folks who didn’t only maybe lose an elder, but same age loved ones.

And if someone accompanies you to a doc visit, of course you can still have private time with the doc. It’s not either/or.

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@lookingforward Sorry it’s confusing. The “unconcerned” part is what I have developed since this is part of everyday life and has been for years now. When things can’t change, one must get used to it (or go crazy I suppose). Developing a serious “don’t care” attitude is life saving, not the other way around. At this point it’s my default.

The rest come at times when there seems to be a flicker of hope (on old situations) or something new/unexpected (this situation). That’s when I need to find info to let me now which side of the fence to let my mind settle on. I do what I can to find info. It takes seconds to check something on the phone (even when comparing it to others - which my family doesn’t mind since they’re as puzzled as I am) and hearing my pulse happens - no effort on my part required.

No one has to read any particular thread, esp if there are or might be triggers in it. For my own experience, I had a co-worker who was merely 3 months older than I am who drew a cruddier straw. We were both dealing with our major issues at the same time. We also have kids in our school who have drawn cruddier straws. Death happens. One either fears it (or ignores it) or accepts that it will come at some point or another. I’m in that latter group.

I also admit to being slightly jealous of a friend/co-worker who beat cancer (NOT jealous that she had cancer!). Her dr flat out told her he understands the stress and amplified self-perception that comes after one of those types of events and had no problem thoroughly checking out any concern she had - just to give her peace of mind if nothing else. Seems that’s the way things should be rather than being told, “no” as I was. (Money was not a factor.) She checked with him for me, but he only takes in cancer patients and a benign tumor is not cancer. Her peace of mind comes from getting anything checked out if she thinks it’s off. Mine comes from accepting I don’t have that choice with previous things. It’s solely new things or new information that pique my interest and get me reassessing the situation based upon them.

And lest you think my obsession continues… I can tell you the weather in FL is going to be cwappy this coming weekend (sigh) - already wrote my guy to get after the weather committee on that one. I could also update you about the future plans of all 14 kids/seniors here at the moment, let you know we don’t actually have AP tests today - we have Keystone tests instead (which seniors aren’t involved with - these kids are now finishing projects or studying for soon to come AP tests, for which I’ve helped a little with Calc), the lad whose mom has cancer has the “2nd best” type, so he’s hopeful, and all of my peers can easily identify with my choosing to be here with these kids today over doing housework at home. Then we got talking about sheep too… new topic for me and recent “obsession” with my soon to be graduate, so I’m gathering info from some locals who know sheep better than I do. I figured posting a thread on CC wouldn’t be terribly helpful with that one…

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Partial update:

(Doing so because I like seeing “endings” to “puzzle” threads myself, so assume some others do too.)

Laying off “extra” exertion - that beyond everyday chores, etc - may have helped with chest pains as there haven’t been any significant ones since. It could be chance too. I’m not sure.

This morning was the echocardiogram. Unfortunately, the technician wasn’t one of my former students so I couldn’t get inside information (sigh). One definitely gets used to living in rural areas and appreciates certain points that might not be legal, but are very helpful. However, this (very nice) dude was from Phoenix (for his high school years), so no results until they get posted online - if they get posted online - otherwise, sometime next week.

This was followed by the blood oxygen testing. This did NOT prove to be a problem, although the test was merely via walking around the office and doing some steps. (I had anticipated a step machine or similar, but no - just halls and second floor steps.) The exertion was pretty minor - very equivalent to what I can get at home everyday vs anything extra - so it repeated daily out of breath issues similar to a minor hill on a walk, but nothing more. (I’d have felt more complete regarding this test if it had measured extra since that’s when I have greater problems.) While BO stayed at 97+, my pulse rather quickly went up to 145 - also matching what I can hear at home. This, I am told, is very unusual and leads the technician to think cardiac “something.” As at home, the pulse was returning lower quickly - was down to 100 before I left a few minutes post test. It started at 65. Higher pulse and getting out of breath are correlated. BO is not.

And now more waiting… only to see the Pulmonologist next week most likely to be told “all is clear” on that end and I’ll have to see someone else. To me, that’s a 100% unnecessary appt TBH. I wish I could ax it and just go on to “whoever.” I really don’t understand why we need to pay for an appt when all one is told is “this is fine.” It’s part of why I dislike our medical “system.” (People tend to be terrific, system annoys me.)

Med school lad and I have been contemplating if the pulse rise is some sort of cardio/vascular issue (itself) or if it comes from an incorrect signal in the brain most likely due to radiation. Neither of us think it’s an out of shape issue, esp considering I’m losing what I could do, not trying to gain anything, and upping exercise definitely shows no improvement (plus quite possibly brings on chest pains). I’ve point blank asked him if what he sees happening in my life is just normal (due to age or whatever) and he told me, “Definitely not.”

The plan is to continue with normal daily things (avoiding extra - just in case), see the results of the echo when they’re available, see what’s recommended next week, then wait for future appts I suppose. Those appts won’t be any earlier than late June as I have other things planned in between with my mom who gets her immunotherapy update on Friday - we celebrate if good and figure something out if bad - either way it’s a planned trip.

One big takeaway from today is cell phone apps are definitely NOT accurate when measuring BO, though they do fine for pulse. :wink:

And the original qu is still there - something physical or something due to radiation? And if/when that gets solved, is it fixable or something just to expect for the rest of life?

I’ll update when I have more info.

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Yes, it’s important to get accurate oximetry readings. I’m glad at least that concern has been alleviated but sorry you still don’t have answers.

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Thanks for the update. Seems like they should have been monitoring you for signs of cardiotoxicity after radiation therapy and taking you very seriously every step of the way. But I’m glad you’re following through with this now.

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@HImom I look at it positively. Anything eliminated from consideration ought to bring me closer to an answer.

@busdriver11 I’m not even going to pretend to know what cardiotoxicity is, but I don’t blame “anyone” for this aside from the Navy docs that made the wrong diagnosis 29 years ago leading me to believe my breathing issues were just the natural progression of asthma as I aged. “It’ll get worse when you get older,” they said. I’m older. No one realized this particular thing is potentially related to radiation. If one doesn’t know my life, it makes sense that I’d just be out of shape once asthma was eliminated. Even I’ve since wondered if it’s somehow just aging, but none of my peers get similar things happening - even those FAR less active in their daily lives.

In any event, the main radiation dr is no longer involved except maybe at a 5 year (or 3 year?) post radiation check of the tumor. He’s already stated he doesn’t believe any of my current symptoms are related to radiation due to wrong areas, etc. It’s the personal doctors and now this pulmonologist who have said they think he’s wrong. I sided with the radiation doc. Now I feel like a pawn in the middle not really sure what to think or what’s next or even what’s in the future. I don’t particularly like holding everyone back when we hike or merely go on walks with hills - like we do daily.

But it’s not their fault this particular symptom was overlooked until recently. It made sense with the explanation we thought we had.

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Just gotta say… my brain certainly doesn’t handle the stress of waiting well at all. These last few days have been very frustrating with quite a bit of convincing myself to stick with it (vs cancelling appt and just returning to life as it is pondering a move to a flat location or, yes, occasionally wondering if life as it is is really worth it - stress is an amazing thing when one looks at it purely from a brain/thought perspective).

At this point though, I doubt the echo will show problems because in my past experience (with the BT), they call rather quickly when there are problems - even if appts end up much later.

So… I’m pretty much expecting to be told (again) that I’m merely out of shape. I know that’s going to bring on major anger/frustration and be really tough to deal with mentally, so I now have a plan. (Also amazing how much plans “relieve” the mind!) We have a mile and a quarter “walk” we do daily, sometimes once, sometimes four times or anything in between. It all depends upon how much we need steps (to get to the 10K daily goal) after daily life has been counted. It’s that walk that has the minor hills on it. If it’s truly an out of shape issue, I’ll start jogging that rather than walking it. If they’re right, I’ll end up in shape - sooner or later. If they’re wrong, then I honestly don’t care what happens.

Considering walking it as often as we do hasn’t helped (and it’s slowly getting worse), I expect they’re wrong, esp since jogging even a tenth of a mile hasn’t produced good results in my relatively recent past, but what do I know? Time will tell.

At least I’ll have my answer and be “done” with it one way or another - quite a comforting thought TBH.

(All put on here as a vent I suppose since there isn’t really a question. Typing can be more therapeutic than talking with my cat - and less of a bother than talking with other humans who don’t “get” the stress involved - esp from someone who normally doesn’t get stressed out at pretty much anything as long as others load the dishwasher correctly! :wink: Human brains are definitely weird.)

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I really can’t believe it’s just that you’re out of shape. You are in better shape than many here and we don’t have chest discomfort and palpitations from mild to moderate exertion which last and last. I really hope that you have a doctor who takes this issue seriously and helps you figure out WHY you are having these symptoms. I don’t believe its radiation either and think sometimes professionals just choose the easy solution rather than helping us figure out WHY we are having enduring symptoms. Good luck and hang in there. Your med school lad will be proud of you for continuing to try to get the answers you deserve.

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It is very stressful to both wait, and not have a clear cut answer. I get that. My son has been dealing with migraines half his life. Yes, he’s tried everything from medication, to therapy, to allergy to neurologists, to pain management and botox injections. He’s cut all sorts of things out, etc. There is still no trigger marker. In fact we just found out his most recent pain management doctor, that really helped and he liked tremendously, was sued for over prescribing opiods. So went the search for a new dr.

So yes, I get the elusive symptoms. It doesn’t mean it can’t be solved, it probably just isn’t cookie cutter straight forward. I urge you not to just stop. You don’t strike me with what you say that it’s because you’re out of shape.

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I agree with HImom.

Creekland, many years ago, I actually had to take a tranquilizer the day before heart tests because I got so worked up. I understand how your feeling, and I’m glad you are keeping your appointments.