Back on the merry-go-round, or just caffeine?

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Protimenow

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The ride isn't over yet. It may not end until I do.

Insurance has approved a visit to UCLA's Cardiac Arrhythmia department tomorrow. They'll query my pacemaker (maybe getting a report on any recorded incidents and get a real time report of my heart rhythm), then I see the M.D. that my electrophysiologist referred me. (My electrophysiologist is happy with this - I ran into him last week, and he was excited when I told him that I'll be seeing UCLA).

He told me that they have the resources to wait until I throw a PVC - they can wait for hours (apparently), so that they can map the problem area and ablate it.

I've been running out of energy after minimal work, and really hope that they can fix this.

If they can, my next largest issue will be getting home - if they have to release me to a 'responsible adult,' I'll be stuck there because Uber apparently doesn't hire 'responsible' adults. IF they want to do a procedure, maybe they'll keep me overnight so the crap that they put into me to calm me down during a procedure wears off, and I can Uber it home.

I'll update this when I can. (Probably Thursday, 4/23)
 

rich01

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If they can, my next largest issue will be getting home - if they have to release me to a 'responsible adult,' I'll be stuck there because Uber apparently doesn't hire 'responsible' adults. IF they want to do a procedure, maybe they'll keep me overnight so the crap that they put into me to calm me down during a procedure wears off, and I can Uber it home.
I bet the hospital has resources to get you a ride home. Is there any chance your insurance will cover it? If they do, you could call medical transport.
 

Protimenow

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I may not get any procedures there, but my Electrophysiologist told me that they may be able to wait many hours until I DO have a PVC -- and that he (my electrophysiologist) couldn't wait that long.

My transportation issue may be that I'm probably 20 miles away from UCLA.

I'll deal with this when I can. (If they keep me overnight, the drugs may have been out of my system long enough that I can drive myself home).

I might know more this time tomorrow.
 

newarrior

I have severe tricuspid aortic stenosis live in Ba
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Bangkok Thailand
C
The ride isn't over yet. It may not end until I do.

Insurance has approved a visit to UCLA's Cardiac Arrhythmia department tomorrow. They'll query my pacemaker (maybe getting a report on any recorded incidents and get a real time report of my heart rhythm), then I see the M.D. that my electrophysiologist referred me. (My electrophysiologist is happy with this - I ran into him last week, and he was excited when I told him that I'll be seeing UCLA).

He told me that they have the resources to wait until I throw a PVC - they can wait for hours (apparently), so that they can map the problem area and ablate it.

I've been running out of energy after minimal work, and really hope that they can fix this.

If they can, my next largest issue will be getting home - if they have to release me to a 'responsible adult,' I'll be stuck there because Uber apparently doesn't hire 'responsible' adults. IF they want to do a procedure, maybe they'll keep me overnight so the crap that they put into me to calm me down during a procedure wears off, and I can Uber it home.

I'll update this when I can. (Probably Thursday, 4/23)
Crazy on Uber--what about Lyft ? Regular cab ? Keep us posted..Looking forward to your post on Thursday...Sending you lots of support from the Buddha and Asia)
 

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Protimenow

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I completed my visit to UCLA.

The staff was very efficient, well prepared to work with patients having Cardiac Arrhythmia.

The Pacemaker tech printed out the report from the pacemaker, then tested my reaction to changes in the auricular and ventricular components of my heart.

The intake worker did a full update of my medications and two LONG EKG strips. She did the EKG with me flat, and other with me sitting up.

I saw the doctor, he reviewed the information from the EKGs and the Pacemaker printout.

He wasn't sure that I need an ablation - or that it would help. I'll be having a 2 week pacemaker (Zio patch), once the HMO approves it, and also a cardiac MRI, to check for scarring or other structural damage.

I'm glad to see that this doctor is conservative and not interested in doing any procedures that may not help.

I'll know more once I get my Zio scan device (once insurance approves it), and the MRI (once insurance approves it).

For now, I'll just put up with my symptoms and wait for insurance to approve the next steps.
 

Protimenow

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I'm sort of back on the roller coaster.

I saw the rhythm specialist (he's especially great at the Rumba), and had a ZioPatch - a 2 week monitor. The result showed a lot of supraventricular tachycardia - SVT. My cardiologist told me that it's atrial tachycardia.

A few days later (yesterday) I was called to set up an appointment for a cardiac MRI with and without contrast.

Maybe they'll figure something out that isn't particularly invasive and that is GOOD news, for a change.
 

Eva

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I'm sort of back on the roller coaster.

I saw the rhythm specialist (he's especially great at the Rumba), and had a ZioPatch - a 2 week monitor. The result showed a lot of supraventricular tachycardia - SVT. My cardiologist told me that it's atrial tachycardia.

A few days later (yesterday) I was called to set up an appointment for a cardiac MRI with and without contrast.

Maybe they'll figure something out that isn't particularly invasive and that is GOOD news, for a change.
Best of luck. Keep us posted. Sending prayer!
 

Protimenow

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Another update - 8 19 21

A few months ago, I saw a specialist at UCLA's Cardiac Arrhythmia clinic.

A month or so after that, I had a two week Zio Patch (records EKG for two weeks).

A week ago, I had a Cardiac MRI with and without contrast. These are, apparently, very uncommon, and require specialized systems to do. They reset my pacemaker so that I can have an MRI, they put electrodes for an EKG, and did a regular blood pressure test and had a pulse OX sensor on a finger.

A person in the room where I was having the MRI was monitoring me throughout the procedure.

Although I was told that they would post my MRI results a few days ago, I'm still waiting.

Maybe this is a case of 'no news is good news' - or not. I'll just have to wait and see.
 

Protimenow

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An update - 10 12 21:

I had my MRI and got the results. The cardiac rhythm specialist didn't see anything on the MRI that seemed related to his specialty area, so he dropped the issue and sent the MRI results to my cardiologist. There was scarring, and the rhythm specialist thought this should be managed by a cardiologist.

In June, I started going to a Cardiac Rehab facility. The last few times I went there, they detected periods when my heart rate went into the 120-130 range, and yesterday, it went into the 140-150 range.

The manager of the clinic called me about this, and also sent a message to my cardiologist and my PCP.

I currently DON'T have a cardiologist. My 'former?' cardiologist said that he would help me whether or not I had coverage, apparently WON'T. He has all my records. I may have to fight with my HMO again, or just give up and go with an electrocardiologist who works with my HMO.

In either case, if the leap in heart rate is something to worry about, I should probably be seen by a specialist. I'm not sure about the spikes, and don't know if I'm now a candidate for a defibrillator.

For the past few months, I start small tasks, and usually run out of energy part way into them. I have more energy at cardiac rehab, for some reason.

If I don't die before my update, I'll update this when I know something more.
 

Protimenow

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A few more things - For the past week or so, I started sleeping on my side, in addition to sleeping on my back. I don't know if this means anything, but it's rather unusual for me to change my sleep positions.

Another strange thing that may be meaningless, but I won't tell my wife about it:
A few mornings ago, when I was dreaming, I walked down a beige colored hallway that looked like it may have been an apartment building. I knocked on a door, and it opened on its own - it didn't seem as if anyone was behind the door. It opened into a space that was lush and green - kind of like a very beautiful garden. The garden filled my line of vision, and I remember thinking that this garden takes up a lot more area than would fit into an apartment - it went on as far as my eye can see.

Was this a dream (I DID wake up). Do I make anything of this?

(FWIW - my wife had a similar dream a year or so after my sister was killed in a car crash. She met with my sister, and described a beautiful garden, lush and inviting. My wife asked if she could go with her, and she was told that it wasn't her time. She still talks about how vivid her visit with my sister was).
 

Eva

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An update - 10 12 21:

go with an electrocardiologist who works with my HMO.

UCLA seems to have clinics all over Southern Ca. Check if you have one nearby. We have HMO and my cardiologist is with UCLA!

An update - 10 12 21:
For the past few months, I start small tasks, and usually run out of energy

If I don't die before my update, I'll update this when I know something more.

Do you use a CPAP machine? In my case, I had very low energy the last two years; I.e. since I started using the now-recalled CPAP machine (dream station)! My energy is now picking up with the new machine and hope it continues.
Also, my sleep doctor who is pulmonologist prescribed an inhaler which I’m finding very helpful…no more out of breaths as before!
just a thought to look into.
I completely stopped my caffeinated and un-caffeinated drinks completely!

Your dream is a good one…a new greener life! You will find a new doctor who’ll help you to feel better!
 

Protimenow

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Thanks, Eva.

I don't use a CPAP - I'm not sure that I need it.

I still put a little instant coffee into my morning Ovaltine, and I'm thinking of increasing my caffeine consumption.

I went to my PCP yesterday, and he ordered a lot of tests. I'll see if there's anything there.

I may also have a sinus issue - pain above the eye when I open it. The doctor thought it may have been caused by sinuses getting inflamed - I get a sinus CT on Saturday.

I like your interpretation of my dream - for me, it may have been a glimpse at where I may wind up when I die - if you believe that kind of stuff (and it's not on the top of my beliefs).

To quote a line that is frequently used in 'Gray's Anatomy', 'the carousel keeps turning.'

I may update this stuff when I know more.
 

Protimenow

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It's been a while since I've been here. Actually, I realized after I named the thread that I actually meant Roller Coaster. A Merry Go Round is much too tame.

Things have been a bit strange. Six month or so ago, I was still having PVCs. I added salt to my diet, and they went away. It was a surprise to me and my cardiologist, but a pleasant one.

I told him that I had a Medicare supplement (so he didn't have to fight with any HMO to do anything for me), and I had an echo and venous study, with instructions to return in three months.

Today was the three month follow-up. My rhythm is still good - no PVCs - but my ejection fraction on the echo three months ago was below 40 - mid 30s. (If he was concerned about it, why didn't he contact me then?). I had an echo in his office and, again, my ejection fraction was below 40.

I got an interesting blood pressure meter that was set to immediately send results to his office. Maybe someone there will actually read them.

He told me that with an ejection fraction that low, I could drop dead at any time. How reassuring.

He told me about Farxiga, developed for diabetes, but off label use showed (suggested?) that it is helpful for people with low ejection fractions, raising the numbers, making the patients feel much stronger. I'm trying it.

I don't plan to drop dead before I start seeing positive results. If I don't see results, I see him again in December and may wind up with another piece of hardware in my chest - a defibrillator.

I don't dare tell my wife about a dire outcome - the doctor seemed okay with just giving me Farxiga.

I'll see how it goes....
 

Protimenow

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I've been taking Farxiga daily - today is my 15th day.

I've been taking my BP twice a day.

I've reported a bit of sweating and a bit of dizziness, and got a call from my cardiologist's PA yesterday.

SHE told me that I shouldn't drink more than 1 liter of water a day - and can push that to 1.5 liters - because my heart couldn't move the blood around well enough that my body can get rid of the extra water. She said that if I drank more, the extra water can fill my lungs or other organs, and I may have to go to the hospital.

She's also trying to set up a more accurate echo that uses contrast, to see more accurately what's going on.

Nobog or Vitdoc - should I really drop my fluid intake that low? With Farxiga, I'm supposed to INCREASE my fluid intake (and I told this to the PA).

I'm reducing my fluid intake but, damn, it's hard to do.

Any advice - maybe personal experience from others with a really low ejection fraction - would be greatly appreciated.
 

pellicle

Professional Dingbat, Guru and Merkintologist
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I've been taking Farxiga daily - today is my 15th day.

I've been taking my BP twice a day.

I've reported a bit of sweating and a bit of dizziness, and got a call from my cardiologist's PA yesterday.

SHE told me that I shouldn't drink more than 1 liter of water a day - and can push that to 1.5 liters - because my heart couldn't move the blood around well enough that my body can get rid of the extra water. She said that if I drank more, the extra water can fill my lungs or other organs, and I may have to go to the hospital.

She's also trying to set up a more accurate echo that uses contrast, to see more accurately what's going on.

Nobog or Vitdoc - should I really drop my fluid intake that low? With Farxiga, I'm supposed to INCREASE my fluid intake (and I told this to the PA).

I'm reducing my fluid intake but, damn, it's hard to do.

Any advice - maybe personal experience from others with a really low ejection fraction - would be greatly appreciated.
hey Protime, make sure you write the @ before names or they just won't get any notifications, so I'll do that for you @nobog and or @vitdoc

myself I can't answer the question, but I have personally inclined to drink based on a balance of need and feel myself that the current trend of over hydrating has problems (such as flushing out nutrients)

I don't want to pigeon hole them, but both mentioned members have specialisations and this question may be outside of their specialist training. This doesn't mean they don't have an informed opinion on the matter, just mentioned it to keep expectations realistic.

Best Wishes
 

Protimenow

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I wasn't really EXPECTING Nobog or Vitdoc to be able to answer, but I thought I'd give it a try.

Yes, I didn't use @ before their names, first, out of ignorance that this is what I needed to do to get their attention, and second, because I figured that IF they saw this post, they would answer.

I wasn't going to hold my breath.
 

pellicle

Professional Dingbat, Guru and Merkintologist
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Queensland, OzTrayLeeYa
I wasn't really EXPECTING Nobog or Vitdoc to be able to answer, but I thought I'd give it a try.

Yes, I didn't use @ before their names, first, out of ignorance that this is what I needed to do to get their attention, and second, because I figured that IF they saw this post, they would answer.

I wasn't going to hold my breath.
well not everyone sifts though every post so if you seek their actual attention then @ mention them properly ... @ mentions are strict, like all computing things, so type the @ then the first three letters of their username. Wait for it to give you the drop down choice and then click that.
OR be 100% damn certain of the exact spelling of their names and just @mention them
 

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