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azmusiclover

Cardiologist Tomorrow....got Some Nerves

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I am going to see my Mayo cardiologist tomorrow for a follow up from my hospitalization. I am not getting any better and I am still really struggling with the fatigue and feeling things being "off" Today was probably one of the worst POTS/Fibro days I have had in awhile.

I am really nervous about what he may suggest about what's going on or what I need to do, or if there is nothing I can do. I just know I'm tired of being so so so so so so tired.

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I here your frustration. I am ready to get off this POTS ride :) Hope all went well at the cardiologist and you get some answers/relief

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Thanks! It was a good visit. He wasn't too worried about my EKG changes since I was really dehydrated and my electrolytes were off. However, he really listened to me talk about my fatigue and lack of restful sleep, even when I sleep 7-8 hours. He asked hubby if I snore, which I don't, and he asked me if I get out of breath when I walk upstairs or any inclines. Which I do. He said he isn't completely sure what he's looking for, but he does NOT think these symptoms are related to POTS.

Next step- next week I go for another Echo with a bubble study again, and then I get to do an oxygen test, where I get to walk and they check my oxygen levels and then put me on an incline and see what happens. Then a 30 day event recorder gets put on. UGH. We'll go from there.

I feel incredibly validated. I felt listened to and heard when I said that this feels different than when I had my initial POTS flares. I'm happy that he's investigating further even though he's not sure what he's looking for. I feel like he genuinely wants me to be well. I see Dr. Goodman in 4 weeks too so it will be interesting to hear his thoughts on it.

All in all, a good appointment.

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I just have to say that the oxygen thing might be key for many of us who have sleep problems and pain and huge fatigue. I learned by use of two different nights of continous pulse oximetry tests. This showed desats to the 70's - over 124 desats per night and overall long periods of pulse ox readings in the 80's while asleep.

A couple years back I had a sleep study that showed mild apnea so was ordered cpap - which I failed at - no one much cared of my docs as it was a mild case. BUT I still had desats on record and low pulse ox readings during the titration study for Cpap. I was concerned - but my concerns fell on deaf ears.

Because of the low pulse ox tests - I asked for blood gases to be drawn - and they showed day time oxygen level of 55% in the blood - that is the threshold for Medicare to pay for continuous oxygen therapy. You are about good as dead if in the 40% range - not good - a real panic situation.

Now I am on oxygen at night at 2liters per nasal cannula using a concentrator machine at the bedside. Works great and is not causing claustrophobia like cpap did.

There is a known placebo effect with O2 - and I did feel like I had the first night in my life of refreshing sleep. So we'll see if over a months time if there's improvement in pain, fatigue and cognitive impairments.... I am grateful this was found out - trying to stifle the feelings of pure frustration that "I TOLD them SO!" Why they wouldn't address those low pulse ox concerns right at the time I mentioned....why suffering needlessly for 2 more years -- blah blah blah

I choose to be happy that at least I have one thing figured out that may be helpful to quality of living - Blessings on your own journey at Mayo - may they find out what best will help you too! Who did you see in Cardiology? I saw Dr. Lyng in pulmonology for the oxygen concerns who was good - my visit with cardiology was not enlightening at all however ....Dr. G was who ordered the overnight pulse-ox studies ~

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Now what,

I am curious about the continuous o2. I just got a prescription for high flow for migraines but the MD wondered if the o2 should be at night too as I wake up with a headache just about every am.

Is there a down side to doing it all night? And how do you do the O2 studY?

Did it help w a lot of your symptoms? I know a CPAP would be too hard for me.

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It may be worth investigating further .... the overnight pulse-oximetry test is an easy test to order and to perform... Whether by a hospital's pulmonary department or a durable medical supply company that sets it up - it's basically just wearing the finger-clip while you sleep - the machine then is returned to the hospital where they download the info and print out a graph with numbers. Some doctors do this as a test to see if a more formal sleep study may be warranted. Also the blood gas test is a blood test ~ mine done at a hospital by skilled clinicians who do them often - it can be a bit tricky to get that artery in your wrist to 'give' it's blood - but once they isolate the artery it's a quick two second test - mine was not painful. You may hear stories otherwise if someone hit a nerve there etc... but most of the time it's just a game of patient waiting as they get that needle in the right spot.

I've only used the overnight oxygen twice - first night was hard because I despise things on my face - to the point of no hats, no sunglasses or any glasses etc... But night number two I fell into a deep sleep and didn't wake till morning - highly unusual for me to feel refreshed in the a.m. but I did! The sleep studies if done at a good place will be good for information for your doctor if warranted ~

Waking up with a headache is a classic sign of hypoxia in the night - of course there are other possible reasons - but it's often the case that low oxygen at night can have you end up with a whopper of a headache...

So maybe get that overnight test done- or a sleep study - maybe gases down the road a bit if warranted - and really I think a nasal cannula is not bad - the noise on the concentrator at the bedside is a bit annoying at first - yet it is a background noise that will likely lull you to sleep once you find the O2 to be helpful.....Blessings to you! Oh and I don't use continuous 24/7 O2 yet - just at night (nocturnal oxygen use) yet my numbers would allow Medicare to pay for a portable use of 02 for the 24/7 if I did need it/desire it/or the doctor says I should. I will have PFT's done in a month which are pulmonary function tests to see if the low oxygen has anything to do with lung function at all - he doesn't think so ~ I think he thinks it's possibly my overweight body to some degree - I have other ideas as well - so time will tell how all this roll's out - good luck!

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Nowwhat! I see Dr. Richard Lee in cardiology. (There are two Dr. Lee's) If they see something with my oxygen I am not sure if they will send me over to pulm. but Dr. Lyng is my MIL's doc for her cancer, so I have heard great things about him. I'll keep you updated on what they do, find out etc. And, we'll see if Dr. G orders anything as well.

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