Is there a potential fix for this (medical)?

Parent Cafe
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@surfcity Going in time, 30 years ago the Navy was supposed to determine why I couldn’t finish a fall AF run (first time ever - no problem doing Field Training or being in the Corps of Cadets at VT - regular jogging, etc, but this once I couldn’t finish a mile and a half run). They did an exercise test and concluded I didn’t have exercised induced asthma as they expected (all numbers got BETTER with exercise), but had regular asthma. Medical discharge was automatic from the AF due to asthma. At that time I was told to expect it to get worse as I aged. “Why,” I asked, “could I do all the stuff I’d already done and not have one single problem with asthma before???” “Because you kept in shape and your body was used to it.” The previous summer I’d worked at the Pentagon (not much exercise), gotten married, and let my exercise slack off, so it made sense - esp when doctors are telling you this after having done tests and one is 21 years old with no clue that doctors can be wrong.

For YEARS afterward there was never another hint of asthma - no meds required. Every doctor I saw told me they didn’t see signs of it, but it was never the reason I was there so it just remained on the chart as a given. We did pretty extensive mountain hiking (miles - my kids consider a 1-2 mile hike a very short hike even as youngsters). We dive (scuba). We have a farm and ponies (up to 28 here at one time). No problems.

But sometime that changed - exactly when I don’t recall. I never let my body slack off with the ongoing problems because I didn’t want to lose more as I aged knowing the asthma was supposed to get worse. I wanted to keep what I had, so I put up with the breathing and chest pains (which I’m still not 100% positive are related, but might be) and pressed on. My guys merely slowed down and waited for me.

Last fall we did some things (trip to Petra, short videos jogging ponies - this last one being something we do relatively often) that let me see just how far it was slipping and I decided it was finally time to see if doctors could do something about it. I expected another asthma test and probably some inhalers.

That test said no asthma. It was not an exercise test. It was a drug added test measuring breathing - quite complete I was told. It wasn’t anywhere near the same thing the Navy had done. I asked WTH? Working backward in hindsight it’s believed the Navy only tested for exercise induced asthma, didn’t see it, and assumed I had the regular variety rather than checking for both. We don’t know for sure. I never kept the paperwork. They gave it to me, but we didn’t see a need to keep it and it ruined my life back then, so I didn’t want it around as a reminder.

Now I still have those progressing problems - no one else my age does. I’m more active than most my age. I’m still at that WTH moment? If not asthma, then what? It’s not an out of shape thing. If I couldn’t do what I’m doing at 80, maybe, but even at 70 and way overweight my pretty inactive mom could still do these things without issues. I’m 50.

Chances are, back in 1988 I was out of shape I suppose… but honestly, I’ve no idea what messed up that one run.

Four+ years ago the brain tumor was discovered and treated with radiation. Is that the cause? Maybe. Or maybe it is pure cardiac and I just inherited the bad family genetics for it. I’m still hoping they won’t let this question end without checking because my other symptoms (the ones I’ve given up hope on and just learned to live with in order to save my sanity/life) could also be vascular. All of this could be connected - or not. I don’t know, but I’d like an answer, preferably one with a fix - or something to stop the progression.

If I don’t get an answer I’ll either need to live with this too (which could be done for a year or two if I move to a flat area and give up most activity other than walking) or decide when the quality of life isn’t worth it any longer. I may not have to decide if I opt to test the out of shape theory as is the current plan. If it gets better great. They were right, but I’m ok with that. If not, “life” could get interesting. Either way at that point, I’ll have my answer and this issue will be done. Stress problem solved!

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@lookingforward If I were elderly I’d agree with you. I’m not. I’m 50. I haven’t even hit menopause yet - though the musical by that name was cute!

I’m comparing what I can/can’t do to similar aged (or older) peers.

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“Yes, we lose strengths as we age. Look at the elderly around us. Or think of that old expression we heard from older folks, “I can’t do xx like I used to.””

Not like Creekland is describing.

@Creekland --Can you give an update with your results from tests? After 12 pages it’s getting confusing about what tests you’ve had and the results.

I’m well aware we’re “armchair” diagnosticians but you never know. It may be that after our 12 pages that the full history comes into focus for Creekland especially with all the different questions that are being asked.
It’s very common that specialists focus only on their specialty and never move from that focus. The pulmonary guy says “lungs okay” and the cardiac doctor says “you’re fine” but never the twain shall meet.

My suggestion to Creekland is to WRITE down your history.
Keep a log of sorts to really track your symptoms–stairs–how many before symptoms appear? long walks? how long to recover?
DO NOT rely on your doctors figuring it out from previous charts. Do it for yourself.
Include medical history. (radiation, lab tests, blood, pulmonary, cardiac and results, etc with dates).
Medicines you are currently on (include herbals, OTC etc)
Describe your symptoms like you do here–“I can’t get up and down stairs without getting out of breath and pulse going up. It goes away but now it’s a real problem” AND the fact that you consider yourself in GOOD shape–it’s NEW to you.

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Creekland–you’ve already written most of your history here already.
Just do it and let people add additional questions. Fill in the blanks. Take it with you.

The one thing that always seems missing is a complete history. Show them you’re serious.

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Sounds good, but it’s way too long for anyone to read when it’s all written down. It’s way too long to discuss medically when one gets 20 minutes with a doctor. If they look into this one thing, it could fix the others if it’s related.

Long (flat) walks - never a problem. We’ve done up to 15 miles in a day, though not often as it takes too much time. Even rarely done it’s not a problem that day or the next.

Two stories of stairs, esp if carrying a laundry basket? I start to notice it - family too. A minute or two and all is well again. Four to five stories in a row as we can easily get in hotels (we almost always use stairs rather than elevators)? That’s my limit. Give me a few minutes to rest, then we can continue, but slowly for stairs. Otherwise, on flat ground carrying water buckets (or anything heavier) short distances can do it too - or jogging ponies or running to escape hail. Lately pushing the limit might be connected to chest pains (all right side though, not left). When that happens those pains can last minutes, hours, or days. Fun stuff. It’s also delayed a little - settles in a little bit after finishing, not right away - more akin to a pulled muscle I suppose.

The breathing issues do seem to go along with pulse rate. > 120 and I notice it. < 115 I don’t. Why the pulse increases so much with so little is the ultimate question. Resting rate is usually upper 50s or lower 60s, consistent with being in shape. With small stuff the rate returns to normal quickly. With walking in Petra all day (Petra is built on a hill) or jogging ponies for a few minutes it can take a couple of days to return below 90. No chest pains with quick problems. It took days for both the Petra and jogging chest pains to subside - it’s why I decided it was time to get this looked into.

In the past, other chest pains were connected to taking vitamin supplements with iron or iron supplements themselves as recommended by my dr due to an Fe Sat blood test that was low. It seemed later that the test was wrong, not my personal levels. Adding Fe added multiple problems from the chest pains to joint pain to fatigue - definite issues! I had really hoped all chest pains would go away if I eliminated more iron from my diet - or iron rich foods. That didn’t happen though the other stuff disappeared. 90% of what I used to deal with chest pain-wise left though, so figuring out that connection was a nice plus.

Nothing else is wrong as far as testing is concerned. Blood numbers come back fine, including those testing kidney and liver function (routine tests via workplace). No joint pains as many of my peers have. No back pains. No thyroid problems even though they said that one would die with radiation - it hasn’t (yet). No fatigue with common 6 or 7 hours of sleep per night. No problem falling asleep - or waking up without an alarm clock around 5am every morning. No digestive issues other than never being hungry and not being able to eat large amounts - also deemed a product of radiation - and one I don’t want fixed! That one is a nice perk.

The BT gives me double vision issues to the left and down (why it was discovered). I’m used to those. They cause no dizziness or other issues. I can drive and get around just fine, automatically correcting for it.

Definitely after radiation I began hearing my pulse - still do. It was bothersome at first (hence why I wanted it looked into), but I’m used to it now and can just turn on noise if it really bugs me.

There are left trigeminal nerve issues affecting my upper jaw and ear with numbness and pain. That’s constant, but varies in intensity. Cold/wind are horrid on the ear, but I live. Some days are horrid for no known reason. There are no other tumors or ear problems (checked via MRI and ENT). No balance or hearing issues. A handful of times I’ve gotten the electrical trigeminal issues, but not enough to worry about at this point. I have oodles of sympathy for those who have that form all the time though.

There are issues with being still too long - those predate radiation. My extremities will feel numb, but without the pins and needles of blood being cut off. If I stay still the numbness moves toward my core and intensifies. It’s a really good incentive to keep active. I’m used to it and it doesn’t bother me any longer even though it’s there. I work around it. It’s also a really good incentive to get out of bed in the mornings.

There’s been carpal tunnel (fixed via surgery) and there are unexplained lumps deep in my left armpit area that came on unexpectedly with intense pain. Some pain is still there when I press down on them, but I’m told it’s nothing (checked via ultrasound) and I must be wrong about how it started.

There were similar “sudden onset with intense pain” deals in the palms of my hand - leaving me with the ability to feel my pulse in a vein that isn’t supposed to be there - or at least a blue blood vessel since I’m told it “can’t be in a vein.” Anyone can feel this. No one cares to. It no longer hurts at all - just a novelty.

There was a similar onset with intense pain around a lump on my finger. That one changed color and was therefore recommended to be removed. Nothing showed up on an xray, but the change in color bothered the doctors (not me TBH). It got removed. It was merely blood vessels growing around fatty tissue.

Due to the way they all came on, I think similar things caused the hand issues and underarm lumps - probably also why I can hear my pulse and have trigeminal nerve pain.

What caused the blood vessel growth is beyond my explanation. Radiation?

When I mention my thoughts/ideas to doctors I get eye rolls and dismissed saying “there’s no way” - even when I showed them a credible source explaining that this can cause one to hear their pulse and it’s not easily detected via an MRI or xray. I point blank asked that they test for it and was told to “stay off the internet.”

I’m a control person. I fully understand that I’m working off “maybes” based upon symptoms, the internet, and the solid belief that everything is caused by something - science makes me think that. I could be wrong. It could be something else. But that’s my best guess and beats being told it’s all stress.

I detest not being in control of my own life and it truly has soured me about trying to get anything else really looked at if it’s not super obvious to all. Fix the broken bone if I get one, update vaccinations when needed, stitch up anything cut through the skin, but stuff only “I” can see and know about. Don’t bother.

This one I thought would be routine and an easy fix… everyone around me notices it. It never occurred to me it wouldn’t be routine and easy. I’ve learned to live with the rest so that’s done as far as I’m concerned. This one? TBD yet.

I will not be surprised to see the typical tests coming back “fine,” esp if it’s just due to radiation somehow and then I’ll probably have to figure out how I want to handle things myself. That could just be me being pessimistic though. I wouldn’t mind being pleasantly surprised, but I don’t want to get my hopes up and have them dashed. Those stress/mental issues are very real (to me) and incredibly tough to deal with.

See? Pretty long even with the “short” version…

Must go outside - med school lad is juggling fire tonight (for the neighbors). Cool show!

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No, NOT long at all. Learned a lot just now. Way under 20 minutes with lots of food for thought.

QUIT short circuiting yourself by deciding what you THINK a doctor needs to know.
Write it ALL out with lab tests and results. (You’ve pretty much done this already)
Go in with a PRINTED copy of your history.

Give your story like you just did but include labs and tests. And dates if applicable.

Let your son look it over and put it in some order that makes it a “case history”.
Print it and take it with you. I don’t know one doc that wouldn’t appreciate it–and if they don’t–you need new doctors.

And …you might need some new doctors…

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@gouf78 I think you missed this part… Nothing I’ve written here has been hidden from doctors, both at JH and locally (though in the JH time we all totally glossed over the breathing issues thinking they were explained - NOT their fault). There’s just no way to convince those who don’t know me that it’s not all in my head - a stress/hypochondriac sort of thing. They see the test results that they’ve done come back “all fine” and the brain tumor and tell me all about how sensitive one gets after having something like that happen to them. This is the part that’s impossible for me to overcome. One can’t go to a doctor in our system with a clean slate. They look at what others have concluded before them and JH has quite a solid reputation with it. Who questions them? I’m certainly not going to win on a medical credibility battlefield.

There are things they didn’t bother testing - like vascular. They never tested out the not being hungry one either telling me since I’m not losing weight all is fine. It’s due to radiation (again, radiation doc disagreed, but it all “ends” with the disagreement). Seemed logical (and probably still is), but I’ll admit I’ve wondered about that one once in a while since my mom’s “stress” ended up being Stage IV esophageal cancer last year. No weight loss for her either until she started chemo. (Realistically for me, cancer should have progressed much more rapidly so is unlikely - or so I like to think anyway and it absolutely started during radiation then never left.)

Med school lad knows it all too. He solidly believes it (he knows my life - they don’t), but is not yet knowledgeable enough to figure it out. Like me, he’s a problem solver. My hope for the future, esp as he does his second year, is that he can figure it out - along with contacts who can/will do something about it.

Or, if it’s due to radiation, there may not be anything that can be done about it. I’m definitely not coming up with any fixes for that. I’d have liked to have had the vascular test results prior to assuming it’s all radiation (esp since there were/are some potential fixes with many vascular problems), but it wasn’t my call. With radiation as the diagnosis, I was offered various meds to help with stress, but merely stopping the doctor appts took care of that once I learned to live with things.

The breathing issue still could be its own thing and not related to the rest. I’ve been too busy lately to spend much time on the internet - just a few minutes with email, news, Lumosity, and here scattered throughout my day on breaks. I am actually waiting to see what they come up with rather than looking on my own (mainly because it will bug me if I come up with some possibility they dismiss).

There is one other thing I forgot on the previous list… but again due to radiation, so not really fixable - just very annoying. I mix up words way too often when speaking. I have to actually warn my classes about it. (“If you hear something that seems wrong/odd, this is why. Correct it automatically if you can and DEFINITELY ask about it if you’re not sure.”) It’s part of the reason I’m seriously considering giving up most teaching. I’d like to think the kids catch it every time it happens (think daily or sometimes several times per day), but when one is teaching, I’m just not sure. If it’s “easy” stuff, then sure, they know if I said left I meant right or chair/desk or whatever my brain messes up. If it’s actual content, there can be problems. How would they know I meant electron and not proton? I use a lot more notes now than I ever did trying to compensate for that. Such is life. One does what they can.

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"There is one other thing I forgot on the previous list… but again due to radiation, so not really fixable - just very annoying. I mix up words way too often when speaking. I "

That could be low blood oxygen or vascular also.

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Also, I didn’t mean to imply that you were hiding anything. My point was to put all the information on a single sheet of paper so it was easily accessible to all your separate doctors.

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Wonderful (typed with all the sarcasm one would expect from that word).

But seriously, I’m in a “can’t win” situation with previous stuff unless it ends up linked to this one AND they care enough to pursue it.

There aren’t really that many doctors involved. The radiation doc was the one I saw the most at the time and PCPs (three, a local one, then switched to one at JH thinking that would coordinate better, and the one I’m with now locally after I decided to just walk away from it all). They’re the ones who look(ed) at the big picture.

I only saw the doc who diagnosed the tumor once. He said to return if vision gets worse. It hasn’t. I believe the tumor part is fixed. I’ve seen two ENTs (one local, one at JH - both said there’s nothing wrong with my ear, but even the Anatomy teacher at school came to that conclusion with no hearing loss, balance issues, or tumor/cyst seen on the MRI). There was one neurologist - found the carpal tunnel along with a disc issue in my back (that doesn’t actually affect me) - then the surgeon who took care of that plus the lump on the finger. The lumps under the arm were looked at both at JH and locally - same conclusion - nothing cancerous and couldn’t have happened the way I know they came about.

Can’t think of anyone else until the current issue adding the pulmonologist.

Solutions brainstormed by myself, family, and a few close friends (one of whom is an ER/ICU nurse) have been:

  • Take a man with me to the appts. Docs listen to men better than women... NOT happening. Not for that reason.
  • Cry. You seem too healthy and well adjusted to have anything majorly wrong. Also NOT happening.
  • Lie. Tell them you are very fatigued. NO. I don't lie. Period. My honor and character mean more to me.
  • Try other doctors. I've considered this option and I suppose in a way it's sort of happening due to my not linking the breathing issues with the rest, but honestly, I doubt any doctor is going to read what's already on the chart and feel differently about those issues. They all have explanations from someone with far more medical knowledge than myself. If I disagree or feel something else ought to be tested - tough luck. Apparently I'm just a stressed out hypochondriac who gets her jollies from various medical tests. (And honestly, I can see why they come to that conclusion. I disagree with it, but I can see their POV esp since whatever this is isn't common.)

Even the one I’m with now (the mother of a student at school albeit not one I had much) had a totally different demeanor on my first appt - before she had the notes from JH - than the second visit after she’d read them. The first visit was genuine interest. The second was placate the patient with a bit of “I don’t think so’s thrown in.” I can easily see the ending of this issue being the same as before. (“This test showed all is fine, nothing else needs to be tested. Want some anti anxiety meds?”) There’s a precedent set.

If I’m to have any luck with a different doctor I think it will only be via med school lad’s connections and then I have distance to consider plus it reverts a little bit back to the first suggestion which inspires a bristling response internally. My current doctor retires this fall. She’s told me she has no idea who her replacement will be.

From this thread I will seriously consider whether or not I want to try to find a cardiologist if it’s not already recommended next week, but quite honestly, I don’t know that it will actually happen. If it’s a radiation issue, I don’t know that there’s anything wrong with the heart esp since the wolf could have eaten me many times in the past and hasn’t. If it’s merely a signal that’s off, then moving to somewhere flat might be my best option that also saves me from the stress of dealing with others being in control. H wants to live on a sailboat. Maybe it’s time I give that some thought. The other thought still remains as well - testing the “in shape” theory, but if that one ends up really going awry, med school lad didn’t even have a chance to see what he could come up with.

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There is a lot of content here and in other threads, so forgive me if I’m asking a question about something that was already addressed.

Regarding asthma:

Have you had a recent workup for allergies? I was struck by the similarities between what you describe and a long ago incident with one of my children.

It sounds a LOT like our own experience with allergy induced asthma with one child,

He had no previous symptoms of either asthma or allergies (although in retrospect we could point to some very subtle signs). He was a very active, athletic kid, who, out of nowhere one early spring could no longer finish normal bike rides. This lasted for just a couple of weeks.

And then one night we slept outside in a tent, and woke up to pollen all over the place. That night he felt like he had a cold, and when my husband went into his room to kiss him goodnight his lips and fingernail beds were blue.

Long story short, turned out he is allergic to the pollen of every tree in this part of the country. They diagnosed him as having allergy induced asthma, and we were scrupulous in folloeing the treatment. He literally NEVER had another hint of an asthma event, and over the course of several years his physicians weaned him off of the meds, other than those for allergies, which are just standard. He is now an adult, in medical school, and regularly runs marathons without incident.

My point is, your breathlessness sounds so much like his, in the months before he hit a crisis.

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Allergies can show up anytime during your life, and the body’s response to a new allergy can be sort of weird.

You might have developed a new allergy that doesn’t present as an obvious allergy. You might not have itchy eyes, or sneezing, or coughing. You might only feel tired and winded when exercising. That was what happened with our son. It wasn’t exercise induced, it was allergy induced, but it became noticable during exercise.

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@eastcoascrazy There’s been no workup for allergies, but they’ve been considered. That theory gets dismissed due to the same thing happening all over from home to deserts, our country and others, all seasons. There’s no variation in the breathing issues - not even the intensity variation that comes with the trigeminal nerve issues.

Actually… I take that back. Donating blood significantly and instantly helps the trigeminal nerve intensity for a day or two, but causes the breathing issues to have a lower bar for a week or two. One flight of stairs can cause issues vs two. Hills get worse, etc. It’s worth it to get the break on the trigeminal nerve though. It’s a short duration, but just downright nice to have. We’ve even considered it on trips (can’t donate blood for a year if we go to X, so avoid X). H tells me we could get leeches. :wink:

Very cold weather makes both worse, but trigeminal seems more wind dependent and breathing more temperature dependent.

I work with plants during the height of pollen count and the lows of winter. Our farm has everything from ragweed to cedars. No change from that. No change from any foods. No change with vacation vs stress vs everyday “typical.” From the problem solving bit, that definitely seems “mechanical” but doesn’t answer the signal vs vascular question.

The only allergy that’s on my chart is “possibly morphine.” That stems from a sledding accident where I hit a tree head on when I was either 7 or 9 (my sister and I disagree on my age - I don’t know who’s correct). The doc at that time put it on there and made a point to tell me (plus my parents) to watch out for it, but none of us recall exactly what happened causing it. I only remember having to stay an extra day in the hospital from it. I seriously doubt it’s a true allergy TBH and I think doctors do too, but I get told to keep it on there just in case - no sense testing for it they say (due to other things they can use instead if they were ever needed).

FWIW, I appreciate suggestions to consider. Brainstorming - esp from folks with experiences like yours - could be useful someday. Med school lad is super willing to consider anything (as am I) and as he gets more info himself from a year or two more of school and experience, something might prove useful. He never forgets anything or at least it seems that way.

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You might have done this already, but how about taking anyone (doesn’t need to be a man) with you to an appointment? That person could take notes, provide moral support, ask questions, and fill in gaps in answering questions, as well as listening. For my parents’ medical appointments, triple teaming (patient and two family members) has been ideal, but even one extra person would be helpful, I think.

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I’m sorry if I’m repeating info here. I read your nice summary. The only thing that I don’t recall seeing is a stress echo?

I don’t know that you need to worry so much about whether the doctors will look at your history and jump to conclusions without listening to you etc. Twice in the past year both my moms doc and my daughters doc both did a little research after we left their offices and calls us back with more info. And both were at our suggestion.

Anyway, I’d make an appointment and just stick to the symptom of increasing SOB with exertion and hills. And it’s getting worse. Full stop. That should get a doctors attention ASAP.

To me you could have a valve problem that could cause that but yet not the “wolf eating you” type issue. I’m not a medical professional but have spent a LOT of time in hospitals and doc offices due to heart issues and my own SOB issues.

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Shortly after this thread started I called and asked if that should be done instead of the regular one considering I only have issues with exercise. I was told no.

This is what I’ve done. I’m only wondering if it’s possibly linked to the other things on here due to what I’m learning and with family (not even friends). To me, I’ve already stopped expecting help with the other stuff. It’s this issue that I want addressed. If it’s linked, it could at least give me the explanations I’m looking for.

Best wishes on your own issues. I’ve found good experiences from people who’ve BTDT helping each other and sharing advice. Some matches/works and some doesn’t, but that’s true of anything in life.

But soon I will be taking a board break for a little bit. My mom’s news today was not good and I’m pissed at myself for being here waiting on Monday’s appt instead of being 8 hours north with her (she lives alone). My priorities got screwed up this time. I had really been expecting good news for her and next Tuesday’s trip to be a celebration while trying to tuck this stuff in to get my own answers. What in the world was I thinking??? The odds were never good for her. I based too much on her feeling better, but apparently that’s just due to being off chemo. (sigh)

I might be able to update Monday evening with the next step of what’s happened (or set to happen), but if not then, I’ll get around to it sometime. If all I hear is “You’re fine, just get in shape” I can guarantee I’m going to be extra livid (mentally - not to them - I do know how to play nicely in public) given the other circumstances going on. They could have called with that info and no, I don’t want anti-anxiety meds.

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I’m sorry about your mom.

When I suggested taking your H to an appointment awhile back, it was not because he is a man, it’s because he is your H. A female friend would fine, too.
Heck, I will go with you. I mean that. I’m not too far. I’d just need some notice to make sure I don’t have conflicts with the kids.

I had a good experience going back to doctors and insisting they take an issue serious. Don’t give up on your PCP after the disappointing second visit. Be honest and explain that the problem is persisting, interfering with your life, and you don’t want to be blown off.

I do have signals off and low blood volume is related and makes it worse. That could explain why you experience worsening symptoms after giving blood. Was the radiation anywhere near your hypothalamus?

If it’s a signal thing, you might want to get a doctor’s opinion, but the recommendations for that tend to be more exercise, not less. Maybe gentle exercise not standing up.

Again, I’m sorry about your mom’s news.

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@MACmiracle Uh, if you’re that close to me, we just need to meet sometime! I enjoy getting to know others.

This is what I did to get where I am now. Great minds think alike.

I figured the lower blood volume temporarily is what changes the bar on breathing issues. It’s still a “worth it” trade off to get a day or two partial relief with the trimeminal nerve things.

Otherwise, I don’t need anyone to go with me on appts. It’s the control stuff that annoys the heck out of me, not anything done in any actual appt - procedures don’t bother me. For the summer when he’s here med school lad is going along - partially for shadowing, partially to be my interpreter from medicalese to English. I keep him up on it all anyway since he’s my hope for the future (and he’s genuinely interested). He’ll go along on Monday. After that, we’ll see what any plan is. He heads out on his medical missions trip to the Philippines during a good part of July and back to school in August, so Monday might be the only opportunity he has.

I may be spending most of my summer/fall up near Canada. From my mom’s house all one has to do is walk out into the street, turn right, look across the river, and there’s Canada - a country I consider my second home. When I think about the whole picture I feel fortunate we have the time we have. We were told she wouldn’t make it to last Christmas. I don’t know how long we have - and there’s still a chance the immunotherapy is working if what the doctor said is true and not just something to make her feel better. It’s just not the “yes it’s working” news I was expecting to hear based upon her feeling better. It was an “all tumors are growing with fluid around her heart” news followed by “they may look bigger because the immunotherapy is killing them off - we’ll look again in 3 months” statement. (sigh) I wish I had been there for support in person, but at least we have the trip coming up.

If more exercise is better I don’t feel so bad about keeping my daily routine at least. I certainly haven’t slacked off that much - only on the more bothersome things. I know more exercise doesn’t improve anything. We spent a month in the Bahamas on the 8th floor of a condo building a couple years back. H and I always did the stairs at least once and often twice per day (stopping for a bit on the 5th or 6th as I needed). Nothing got better from Day 1 to Day 30, nor did H have any problems doing the whole thing at once (Day 1 or Day 30) yet he’s older and exercises less on a daily basis than I do - higher BP and stuff like that too. At best, more exercise might slow or stop the slow progression.

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Just what should be the final update…

I called it (almost all of it anyway). (Nice to know my mind can still figure predict things actually.)

The echo was fine.

The doctor doesn’t see anything wrong. The one thing I “missed” with calling it is he now doesn’t even think radiation is responsible. He thinks it’s merely being overweight and getting deconditioned due to age. I specifically asked about vascular and he said I could go back to my PCP to request a referral to a cardiologist - discussing that with her - if I wanted to, but he didn’t see any other symptoms pointing that direction, esp since I don’t have left side chest pain and don’t get fatigued during the day, etc, etc, etc. Come back in 6 months for a follow up. (Not happening - no reason to if lungs are fine.)

Med school lad was there. Med school lad confirmed the breathing things are very real in his opinion when asked - audibly real - and it meant nothing other than repeating the head back to PCP thing to discuss it with her if desired, but his suggestion is to start more exercise.

Then, of course, I will get the bill sooner or later.

The only good thing is med school lad was able to see this all in person. The majority of the trip home he was talking about it including things like “his info is out of date, etc.”

BUT, I’m done. There’s the medical stuff some of the rest of y’all get. There’s the medical stuff one sees on TV where everything works out. There’s the theory (I believe in) that everything is caused by something being out of whack. But then there’s my situation and I doubt I’ll ever be able to win, esp if this isn’t typical cardiac, but rather something more obscure. Should something happen due to that decision, I’m ok with that. My kids are grown. My H wants to live on a sailboat (and would be able to do so). It’s been a good life. If nothing else happens other than more slow progression, then all should be fine for another couple of years because I have learned to live with it - annoying stuff, but not (as of yet anyway) deadly stuff. When the quality of life dips below what I like, I’ll deal with things then (that’s not now BTW).

I plan to resume life as it was when I thought this was a natural progression of asthma, though I’ll admit still getting somewhat pissed that even back then my experiences with the medical world were less than what they should have been if one believes what others say.

And now… it’s finishing packing for that trip with my mom.

200

I’m sorry to hear about your mom. I get that you have to focus on her, but don’t put yourself on the back burner too much either - I’m sure she wouldn’t want that.