Question for you, is the doctor that said radiation has no role in your issues part of the group who administered it? Sometimes the top priority for people is CYA, not leaving open any door that could lead to their fault.
Glad the echo is fine, however, I would want to see a copy of the report. There may be some things the doctor glossed over, because they’re minor. Your son would be interested, I’m sure.
Have a good visit with your mom.
I ran your scenario past my wife who spent two years as a cardiac care nurse and now is a primary care NP. She also has cardiology in her office twice per week. The discussion took about 2 minutes, 1:45 of it was me trying to explain the brain stuff and the symptoms. Here’s kind of how it went, the important part:
Me: She can walk for miles on level ground but …
Her: She gets out of breath going uphill?
Me: Yes, and …
Her: She needs a calcium scan and a stress echo.
Me: What about a regular echo?
Her: Nope. Her calcium score is the most important. After that we’d know where to go.
I’m glad you are finding some peace with it. Enjoy your time with your mom.
Calcium score only costs about $100 or so. Definitely something one would want, at least as a baseline if there was fear about heart issues.
Family history of cardiac issues
High total cholesterol and LDL
Shortness of breath on exertion and change in ability to perform usual daily activities
There is absolutely no way I would accept cardio/vascular being ruled out by anyone other than a cardiologist. Would you ask an electrician to diagnose your plumbing problem? I’m going to be blunt. The “what will be, will be…hubby can live on a sailboat” attitude is disturbing. I think perhaps being diagnosed with the brain tumor and having to deal with the many medical treatments and your mom’s illness, may have brought on some level of depression. Please consider getting some help to deal with all that has been put upon you. AND PLEASE SEE A CARDIOLOGIST! I wish you well.
I’m befuddled that no stress echo was ordered. The symptoms don’t occur unless you are exerting yourself so it makes sense that you need to test under exertion.
I had a stress echo and my only symptom was feeling SOB at times which we all kinda suspected was just due to anxiety (it was) but they still wanted to rule things out.
I had no connection to exertion at all but they still wanted to be sure.
Of course my PCP suggested I see a cardiologist once he heard the SOB symptoms.
I had a stress echo and then the test was repeated with agitated saline. It showed that I have a congenital hole in my heart that closes up when I exercise, so not a problem. The agitated saline allowed testing without dyes that could cause me a reaction.
merely being overweight and getting deconditioned due to age<<<<<<<
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How much overweight, and how old are you?
@Sybylla I believe OP said she was 50
(Which is still kinda young in my book!). I don’t think she mentioned how much weight she’d like to lose.
Original radiation doctor, yes. He said some of these things (hearing pulse, etc) could be part of radiation for approx 6 months, but then shouldn’t be. The other things shouldn’t be related due to wrong area. The doctor I’m seeing now has no connection. (Neither doc - PCP or Pulmonologist)
I doubt I’d get any further asking for the scan. I asked point blank, in English, about doing the stress echo instead of the regular echo mentioning that I only have issues with exercise and was told point blank that it wasn’t needed. If I could do these tests myself only involving a doctor if results warranted it, I would. I actually do believe the thoughts on this thread. Our system doesn’t allow for it.
Or is this one I could get myself via online ordering as many blood tests are?
The BT brought on the expected WTH moments until I found out not all BTs are horrid. The diagnosis, treatment, and doctor visits with that were all fine - they made sense. Afterward, with the rest of this stuff and how it’s been handled boggle my mind (my “science” mind is wired to need things making sense and to fix things). That very much brought on depression (though I didn’t recognize it at the time). Very honestly, I almost didn’t survive. There was one small thing that happened changing “history” for me. Quitting the appts was the only thing that kept me sane. Learning to live with things is something I can do. Dealing with frustrating problems I can’t fix isn’t.
I could sense this starting to go down the same road when the asthma diagnosis got reversed - hence - starting this thread. If there was “no hope of change” (due to radiation) then I’m not pursuing it any longer. Because of this thread I gave it longer and did the tests - even asked for the one to be changed (unsuccessfully). I’m at the point where I can’t pursue it any longer. I’d like to think I can mentally overcome anything, esp since I know what is going on (in my mind). It bugs me that I can’t “just do it,” but I know how the body works. I know how I can stop it from working. (Isn’t knowing in depth bio wonderful?) There’s tons of access all around. I AM making a decision to preserve my sanity. It’s only the medical issues that get me to that step. Stop the medical issues and learn to live with what life gives me. Change diet, change exercise, go on trips, whatever. It works - well. Here looking over the St Lawrence River (the prettiest river in the world on a sunny day) and enjoying time with my family - esp with no steps or hills - the medical thoughts didn’t even come up once.
And FWIW, I’ve asked around (before) about some cardiologists… most quips I heard aren’t very reassuring that they will do more than check the basics. Checking the basics would be fine if the basics are wrong. I’m guessing it’s something more obscure than basics. BP is fine. Resting pulse is on the lower side of normal. No fatigue. No feet swelling. It’s just when it increases that breathing issues occur (that happens to everyone). What I think I’ve narrowed the question down to is “why does it go up so high with such little effort?” I can’t answer that. (Med school lad suspects the problem is in the coronary arteries - the heart isn’t getting enough blood when it beats faster, but he admits he doesn’t know enough yet - his is just a guess as we brainstormed on Monday.)
BMI toggles around 30. It goes less when I’m home and eating/exercising like I should and over when I’m traveling and/or with family and eating way too much with low exercise. I’ve been as much as 13lbs less than I was yesterday when we left (BMI was 29.8 at the time) - and as much as 20lbs more - no change in issues that I can discern from weight, but… maybe I suppose.
Gotta go. We’re heading out on a boat looking at the islands today. I do/have appreciated this thread. It’s part of what makes me think I’m still sane when others are looking at the same things and also going WTH? Ditto that with med school lad going to the last appt with me. I have no idea why things are different for me than they are for others. The only sense I can make of it is folks are looking at previous notes, clear tests with what they choose to do (no idea why they make the choices they do), and stress is the most obvious factor with just that info. If that’s all the info I had, I’d agree with them. I see their POV - except for why they won’t delve deeper “just in case,” esp when I ask them to. Money is not a factor.
Such is life.
A BMI of 30 is obese. I can see why doctors are suggesting you get in better shape and I can understand why going up stairs would leave you breathless.
Not all states require an rx to do a calcium score, but mine did. All I had to do was ask my gp to send a script and I agreed I’d pay out of pocket if necessary, but my insurance covered it. It made me feel better to get a score of zero. I felt statins were being prescribed unnecessarily, so I wanted to check a few things myself. Another test you can get no problem along with your cholesterol blood test is your c-reactive protein. It tells you the level of inflammation in your body.
50 IS young and a 30 BMI really does have an effect on how practitioners view your interest in being healthy. this isn't "merely overweight". The first potential help for you is some serious weight loss and some serious exercise. That is why you are getting blown off. There is no need to dig deep when the first indicator is right in front of your docs. Exercise is going to feel hard when you are obese, but the fantastic part is that is so worthwhile at 50, because you can still reverse fate.
Just because you’re overweight doesn’t mean SOB stems from that. In fact it could mean that the need for cardio test is even greater.
I dunno about the whole BMI thing. It depends upon how you measure. If you go by the charts, it doesn’t consider muscle or bone mass, which is ridiculous. I had a friend who was the same height, who was easily in the “overweight category”, but she was a weight lifting machine. My gym trainer measured my BMI with something that you grabbed with your hands that declared me “borderline obese”, at 65" and 125 pounds. Some of that stuff is pretty hokey, so I don’t know how much stock to put into it. My doctor does have one of these more complex machine that measures your bone/muscle and body fat mass, that they think is very accurate.
I really don’t think 30 BMI is truly obese. You really need to look at the person before you automatically think that. Granted it is not skinny but I could tell you I have around a 30 BMI and I am 45 pds overweight, and if you saw me you would not call me obese, heavy but not obese. If you truly want to see obese people come to a bariatric unit of a hospital.
Being short of breath should not be the cause of that especially if she was doing that exercise without any problems before this all started. I would suggest once you come back from your vacation to see your mom and things settle down to make an appt for a cardiologist. That way for sure you will get correct answers.
Side note; If a doctor is blowing you off because you are heavy then find another doctor.
'Tis possible with the weight, of course, but I’ve always looked at it in context. Many of my similar aged (or older) peers/family weigh more, do less, and have no problems with things I’m talking about it. It’s entirely possible I’ve gotten the weak end of the genetic pool genes though. Humans vary.
Once our older family members pass away I’ll get back down to a weight I’m happy with - losing roughly 15 more pounds. I doubt it will improve anything, but I certainly won’t complain if it does.
I totally “get” what doctors see in their 20 minutes - it’s why I ended things before and am doing so now. There is no way I can “win” with our system being the way it is. If there will be anything done in the future involving a doctor, it will involve med school lad as he knows the whole story in context. He knows our life - what’s happened in the past and what’s happening now. He knows how/why I’m in the Top 8% of users in my age group (Top 12% of all users) with Samsung Health. I’m really not inclined to believe all of those below me have issues with what I’m talking about - or even just those with a similar BMI.
I’m so sorry you are having these issues. It certainly IS frustrating. The only way I got things done was having one of my MDs as my champion. Originally, it was my internist who would refer me to the specialists and tests he deemed appropriate.
After awhile he got more nihilistic and my allergist became my and our kids’ champion. She helped us through some rough spots and referred us to programs she felt could help us.
Then, my lung MD in Denver realized I was getting LOTS of conflicting info and had me go to National Jewish for 10 days and had me see a battery of specialists and many tests to get all my Qs answered.
Like you, I could NOT have done any if this without these champions, each in its turn. In our state, you can’t even order a blood or lung test without an order from the correct provider.
To me, it really does NOT sound like your issues are due to your weight, though it is a convenient way to fob patients off. I really hope you can get a champion—your med school lad or someone else. Without a champion, it is hard to get puzzling medical issues oroperly diagnosed, as you well know. 
I don’t know if it is or isn’t, but I know for what I’m talking about, it would be unusual to be the cause based upon others I know and hang out with.
I think when folks hear “obese” they are thinking of large folks who are eating all the time and love the All You Can Eat Buffets while shopping for clothes in the Plus Size stores. I’m related to many of those folks (and I love them). My life is different though.
In my situation, I’m never hungry and seem to have conditioned my body to get by on fewer calories. At home I can easily skip a meal per day or eat three very light ones. When we travel or stay with relatives that’s not as easy to do nor do I want to eat light fare when eating out in new or nostalgic places. I still can’t eat much compared to most folks and am fortunate that not getting hungry means I don’t have to make hard choices - when one is full it’s easy to stop after a few bites. I really don’t want that particular side effect fixed. My body can gain weight on so little that if I ever get hungry again it’s going to be tough to control weight.
If one looks at yesterday (we’re on a trip now), I had a slice of bread with butter and a coconut almond breakfast bar for breakfast (with unsweetened tea to drink). That should be in the 300 calorie range if numbers printed are correct. Lunch was at a restaurant. Mine consisted of half a roast beef sandwich and a side of pasta salad (oil based) with water to drink. Supper was the other half with a spoonful of potato salad on the side - more water. No biggie on all of those, but even with being full from lunch I joined the others with one scoop of coconut chocolate almond ice cream in a waffle cone mid afternoon. (I skipped our late night game snack when everyone else was eating nachos. I was too full.) There was also the equivalent of a full size (16.9 oz) soda in there. AND I only got 7400 steps instead of my usual 10K+ with no exertion types of stuff because we’re on mostly flat ground here.
The difference from home makes it so I gain an average of 3/4th lb per day when we travel. At home I pull things off at the rate of 1 or 2 lbs per week simply with different choices. I’m not really worried overall unless we go on the road 24/7. If I were to drop 30 lbs I’d be in the normal BMI range (I just checked). I’ll be content getting back down to where I was shortly after radiation. That’s dropping 15-20 lbs.
Clothing wise I’m often deciding if the medium or large looks better. XL is way too big. Anything in a Plus Size is way too big.
While the BMI toggles around 30, it’s not what most “people” call obese. It’s just what the Powers That Be use at this point. If doctors are using that and not caring about the rest, it’s another thing I can’t control. Such is life. If weight is what’s making the difference then it will fix itself once the large number of family visits cease. I can wait.
Your son is spot on about the most likely culprit is coronary arteries. Second is probably valve leakage, third would be arrhythmia, fourth something pulmonary. As a childhood asthmatic, you absolutely know when it is your lungs. Again, I’m not a professional but get exposed to it a lot by osmosis living with my wife for 26 years.
Your medical people may not want to do the calcium scan because it is another dose of radiation. It images all of your coronary arteries looking for calcium deposits. Your “score” is just your percentile based on the amount of blockage of other people your age. Zero is no blockage, 99 at age 50 usually means surgery.
That BMI does not explain your shortness of breath, not to the level you are experiencing. I was at a finish line for a half marathon recently and women with BMIs higher than 30 were finishing in around 2 hours. We play soccer and climb mountains with people with higher BMIs. It’s mostly about cardiac health.
I remember reading that studies showed that the most key factor in healthy longevity is not weight, but physical fitness.
Of course, as a former cardiac ICU nurse, I’ve also seen the effect heredity has on cardiac health. You’ve got to read the fine print when you pick your parents, people. 