My new autonomic cardiologist wants to hospitalize me for tests!!!

[WillowJ]

Hi, Gingergirl, sorry it is so difficult and confusing. I know how hard it is, when careful planning is needed, to have things change unexpectedly. And to not know, is also hard.

Your insurance should have some mechanism for denials. They should send you a pamphlet explaining this with your denial, but it might not be fast. Attorney might be faster. If they did not send a pamphlet, call (or have your husband call) patient services and ask who you can talk to about getting medically necessary services, which were denied.

Or the hospital might have a patient advocate, although I have only recently learned of this and I do not know if they deal with insurance. I guess you may know more about that than I do.

See if the cardio can order fewer tests at a time . The insurance might be more willing to authorize this than doing everything at once.

I get short of breath talking on phone

I know this is totally off topic and gives you more things to think about, but have you been tested for asthma? This is a common comorbidity with ME or CFS. They might have to use methacholine if your case is more triggered by environmental stuff than constant, which can trigger an MCS reaction, but it's not a nuclear test.

While they're doing a lung function test, they can (if prompted) add one for breathing muscle strength, which might be worthwhile if you feel that your lungs get tired (some ME patients do).

 

[Gingergrrl]

I have some new info and was in a state of complete overwhelm and panic when I wrote that update. My new cardio called me and said that he is happy to talk to CFS doctor so I sent an e-mail giving them each others contact info. I apologized in the e-mail that I might not be handling it in the most graceful way but I really was desperate for them to confer with each other re: the tests that they want me to have. I am confident now that they will speak to each other and that alone is a huge relief.

When I spoke to cardio, he said that his office is still fighting it out with my insurance to get authorizations and it is not a lost cause. He agrees with me that the first test should be the heart scan and they are trying to get it authorized for Thurs. We canceled the lung scan that was to be tomorrow (b/c clinically he wants the heart scan first) and he said they are trying to get me hospitalized on Fri. He said he is working in the hospital this weekend so he will be there and once I am in the hospital, he can order whatever tests he wants (and at that point we will know the results of the heart scan which was always the plan.) He also will get a later check-in time so I don't have to be there at 6:30 am.

None of this is set in stone yet but I am so relieved that he is advocating for me. He also still does not think that I have myocarditis and I am trying to find out why my CFS doctor mentioned it. He didn't mention it as if it were a fact but as a possibility to explore. I am just confused how one would know unless there is a heart biopsy which I am certain will not be done in my case (and I do not want one!)

My insurance runs out on Sept 30th so if they do deny these tests/hospital, by the time I would appeal, I would no longer have this insurance anyway. I am hoping that this all turns around tomorrow and I can have the CTA on Thurs and be admitted on Fri. It is so hard dealing with the constant changes to the plan.

I apologize that I am too tired to respond to individual messages right now but I read them all and appreciate all the feedback.

 

[zzz]

[This was posted before I saw @Gingergrrl's latest post, which I now have to read.]

I am so sorry to hear of all the troubles you are going through! This was completely unexpected. I am really surprised that the insurance refuses to cover the heart scan.

But please, above all, don't panic. Fortunately, you are not in an emergency situation. All these delays and changes can be frustrating as hell, but if you do your best to be patient, some solution will be found. Worrying about all the things that might go wrong will just cause more stress for you without accomplishing anything. Doing your best to try to remain focused on the present and taking one step at a time (much as @Kati said) will be the most productive and least stressful. Your insurance does expire at the end of the month, but that's still two weeks away. Also, it may be possible to extend that date significantly; I'll contact you with details.

Dr. C told my husband and I that the most important test & starting point was the CT heart scan b/c if it found a problem, it would determine the next sequence of tests including more invasive heart tests if needed. He said I was too ill to do all these tests as an outpatient and that I should come into the hospital.

That certainly made sense to me.

But here is the worst/most scary part. My CFS specialist (who I trust wholeheartedly) sent me an e-mail today that he felt that ischemia could be caused by low blood volume (on my exercise echo) AND that he is concerned that I still could have a virus in my heart!!! So this matches what @zzz and @Kati have been telling me. The reason I did not think it was the case is b/c I asked my new cardio and he said absolute no on both counts.

This is where your CFS specialist's knowledge comes into play. From the reference to Dr. Lerner's article that I sent you, you can see that certain heart problems happen only with ME/CFS - he thinks they can be used as an identifying marker. Your CFS specialist is much more likely to be aware of this than your cardiologist, as the prevalence of ME/CFS in the population is relatively low (0.3%), and your cardiologist has most likely not encountered this or read about it.

He said a virus would have shown up on the echo and it didn't.

A virus (especially the ones we're talking about) is an extremely tiny, microscopic thing - it could never show up on the echo. What he undoubtedly meant was that if you had a virus that was causing myocarditis, which is inflammation of the heart muscle, the inflammation would be big enough to show up on the echo. Although this is often true, in the case of ME/CFS, it often is not. That's why the biopsy is necessary for a definitive positive or negative diagnosis - with ME/CFS, it just can't be done on the basis of an echocardiogram, unless there is major inflammation. If you have a virus, it's better to catch it before that happens.

Also, my CFS specialist a few weeks ago (once he saw I was negative for Parvo) said he did not think I had a virus in my heart and was not worried about it. So I am not sure why he changed his mind?!!

My guess is that he kept rolling this over in his mind, decided to do more research, and then found what I found (and forwarded to you). Or he just kept considering your other symptoms, some of which are sometimes caused by a viral myocarditis, and decided that that was a possibility after all.

AND I am getting screwed over by my insurance.

You sure are. There are basically two things that can be done here: Dr. C can go as I as he can up the corporate ladder in the insurance company until the decision is reversed. He may have already tried this; in any case, it is quite time consuming. The second, as @Kati pointed out, you can sue your insurance company. This is obviously time consuming and wouldn't be resolved quickly, so your treatment plan would have to be modified.

Also, all states have insurance regulation agencies. I don't know how this works in California, but you could try contacting them. @WillowJ's advice on insurance is also good.

I e-mailed my CFS doctor and asked him about this b/c he said in his e-mail that while I was in the hospital if it turned out that I needed an angiogram, I could also get an "Endomyocardial biopsy." I was confused b/c @zzz said they are not done in the U.S. and it also sounds incredibly invasive and dangerous and can't imagine it would be authorized when insurance won't even authorize the CT scan.

This is a different procedure than the one I was referring to, though it should be equally effective. You can read about the basics of a coronary angiogram (the type you would be having) in this article on MedicineNet. An important point from the article:

Coronary angiography is performed with the use of local anesthesia and intravenous sedation, and is generally not significantly uncomfortable.

However, a coronary angiogram is rather invasive, as it involves threading a catheter through an artery up to the heart. As the tip of the catheter goes right up to the heart muscle, it's possible to have a little tool on the end of the catheter snip off a tiny piece of heart muscle for later biopsy. This is what constitutes an endomyocardial biopsy.

If the angiogram is authorized by your insurance company, it's hard to imagine that they would deny the biopsy, as it's a minor part of the whole procedure.

So after talking to my husband, we decided that the only solution was that these two doctors speak with each other.

Yes, clearly that's necessary here, and I'm glad to hear that both doctors want to do it. The most likely outcome is that they will come to an agreement. However, if they don't, and present you with a choice, I would respectfully disagree with @AndyPandy and recommend that you follow your CFS doctor's advice. This is why you have a CFS doctor, and he seems to be really on top of this.

 

[Gingergrrl]

@zzz

Yes, clearly that's necessary here, and I'm glad to hear that both doctors want to do it. The most likely outcome is that they will come to an agreement. However, if they don't, and present you with a choice, I would respectfully disagree with @AndyPandy and recommend that you follow your CFS doctor's advice. This is why you have a CFS doctor, and he seems to be really on top of this.

They are supposed to talk tomorrow and I am praying this happens and that they come to an agreement on what tests I need. However, what you said re: respectfully disagreeing with Andy, I am really torn on this one. My new cardio is the head of the dept at his hospital, is an autonomic specialist and trained at Yale & Stanford. He is in his 60's (I am guessing) with significant experience and has worked with patients with EBV and CFS. It is night and day from my former cardio who was young and her experience was much more limited. My CFS doctor, who is one of the kindest people I have ever met and incredibly knowledgeable about CFS is not a cardiologist. So, I am torn on this one!

 

[zzz]

@zzzThey are supposed to talk tomorrow and I am praying this happens and that they come to an agreement on what tests I need.

One reason this is extremely likely is that even though they may disagree on what your likely diagnosis is, having the tests done will make it clear which one is correct, and for that reason, I would expect them both to want the same tests. For example, your cardiologist may feel that ischemia is more likely, and your CFS specialist may feel that your exercise results are better explained by low blood volume. The CT cardiac scan would make clear what the answer is, or even if both factors are contributing.

Similarly, for the myocarditis question, the endomyocardial biopsy would give a clear answer. If by any chance your cardiologist is reluctant to do the biopsy part, closely examining the T-waves from your Zio patch results may convince him. The T-wave tests are even a part of the recommended tests in the Canadian Consensus Criteria, the most accurate government definition of ME/CFS currently available:

24HOUR HOLTER MONITORING: repetitively oscillating T-wave inversions and/or T-wave flats during 24hour monitoring. Note: this pattern may not be reported or subsumed under non-specific T-wave changes.

T-wave inversions are one symptom of myocarditis, especially in PWME, although they can also be a symptom of other cardiac disorders.

If your cardiologist does not want to do the biopsy after reviewing the T-wave results (either now or previously), then I would agree with @AndyPandy that you should defer to him, as it's generally not a good idea to ask a doctor to do a procedure that he's not comfortable doing.

 

[Gingergrrl]

Update: My cardio's office called and said that my insurance was refusing to authorize the heart CT scan even after the nurse spoke with the doctor at my insurance and explained that I cannot breathe while walking. They flat out did not care and said it did not meet their criteria. I told her I would pay privately for the test (which seemed to be $500-$1000 when we looked on-line) which made it even more ridiculous that my insurance would not pay.

She said all they could do was bring me in at 6:30 am on Fri morning for the TTT and I was so frustrated, I started to cry again b/c I told her that I really was not comfortable doing the TTT as an outpatient prior to having the heart test. Dr. C on the phone last night told me the TTT should be inpatient and that the heart scan results would determine the sequence of events clinically. The woman was super nice and told me that dealing with insurance denials this was the worst part of her job (and I know from my old job that she is correct.)

She had Dr. C call me and he said that none of this was my fault and HE still wants me to have the heart CT first so he has a new plan. The new plan is that I go to the ER tomorrow (at his hospital) and tell them that I am his patient and that I am having shortness of breath and chest pain and he will get me admitted via the ER. Once I am admitted, he can order any test that he wants including the heart scan. He is certain this will work so I am going to have faith in him. I have never been to this hospital before and it is not connected to the ER where I went back in June for shortness of breath.

I feel weird typing this but I have never mentioned his name, my name, or which hospital so I feel it is okay. So now I need to pack my bag and will get admitted via the ER tomorrow. I paid a significant amount of money to keep my private insurance while I was on medical leave from my job and now see what a waste of money that was. I am now glad to be switching to a different insurance for Oct.

Can you please all pray or send positive thoughts out into the universe that this plan will work?

24HOUR HOLTER MONITORING: repetitively oscillating T-wave inversions and/or T-wave flats during 24hour monitoring. Note: this pattern may not be reported or subsumed under non-specific T-wave changes.

@zzz I will ask him if I have ever had these t-wave inversions and am bringing a copy of my most recent Zio Patch test from March 2014. To my knowledge, I did not have them but really do not know what to think about anything at this point. For now, I just need to get my foot in the door and then I will ask him all these questions.

 

[OverTheHills]

Can you please all pray or send positive thoughts out into the universe that this plan will work?

Positive thoughts to universe and virtual hugs to you. Good luck. OTH

 

[Sushi]

That sounds like a plan that could work!

Sushi

 

[NK17]

@Gingergrrl I'm sending all my positive thoughts.
What you have to endure while very ill and what your doctor has to come up with is absolutely astounding.
The system is broken and rotten. For profit healthcare system does not serve or help anybody, but insurance companies. Rant over, I'll think intensively about you .

 

[AndyPandy]

Thinking of you @Gingergrrl and hoping the plan works well for you.

 

[Gingergrrl]

@Gingergrrl What you have to endure while very ill and what your doctor has to come up with is absolutely astounding. The system is broken and rotten. For profit healthcare system does not serve or help anybody, but insurance companies.

I totally agree. The greed that I have seen by the insurance companies (both as a patient and social worker) is mind blowing. Don't even get me started on this topic!

 

[zzz]

I totally agree. The greed that I have seen by the insurance companies (both as a patient and social worker) is mind blowing. Don't even get me started on this topic!

OK, I won't, though I certainly totally agree with you. As with so many other people here, I think of you frequently with all the best wishes for your progress.

Your cardiologist is proving himself to be a truly extraordinary person. To say that you are in good hands here is a great understatement. He clearly knows what he's doing, and I think his confidence in his plan is well placed.

She had Dr. C call me and he said that none of this was my fault and HE still wants me to have the heart CT first so he has a new plan. The new plan is that I go to the ER tomorrow (at his hospital) and tell them that I am his patient and that I am having shortness of breath and chest pain and he will get me admitted via the ER.

Yes, this will definitely work. Nothing will get you into the ER faster with highest triage priority than chest pains and shortness of breath. Saying that you're a patient of Dr. C will simply grease the wheels a little more. As soon as he is informed that you are at the hospital, he can have you admitted on an emergency basis.

Once I am admitted, he can order any test that he wants including the heart scan. He is certain this will work so I am going to have faith in him.

He is absolutely right. In an emergency, insurance companies cannot request pre-approval. So they can't ask for pre-approval for your hospitalization, or for any tests your doctor orders. They have to rely on your doctor's judgment. And they have to pay for whatever he orders. So he is right; this will definitely work. It's a plan of last resort; if a doctor does this often, he'll get in trouble with the insurance company. For that reason, no doctor does this often. But your cardiologist appreciates the seriousness of your situation, wants to have the tests done properly, and is willing to put himself on the line to make sure that you get what you need. You will, and you will get the best care possible, all paid for by your insurance company. So you can relax and be grateful that you have such a skilled and compassionate cardiologist.

 

[daisybell]

Wishing you all the best. Good luck!

 

[Kati]

Ah the er trick... It works . Fingers crossed.

 

[taniaaust1]

That is very scary!!! I am trying to just tell myself that we really don't know how my situation compares to his and not dwell on it or my anxiety will take over.

Sorry I wasnt meaning to make you anxious (he had no breathing/heart "symptoms" as far as I am aware). I really do think your issues are probably dysautonomia, its the most likely thing, nearly all ME patients seem to get some kind of it and I doubt you are the exception.

 

[taniaaust1]

Is there a correlation between the high HR and the numb/tingling hands and arms? I have been experience that lately, mostly in the morning when I wake up. I have been thinking I needed to get some adenosyl B12. I also sleep badly and suspect that my heart is not behaving well while I am asleep.

Its a common sign of vitamin B deficiency... so make sure you arent deficient in that.

POTS (low blood volume) can cause tingling in hands and arms too (and can do the same in the legs and feet).

 

[taniaaust1]

It turned out to be a lot more complicated and I am going to type an update to explain what happened next. It was torture for me waiting to hear from him and know the plan! I am not good and waiting and when there is an answer to something, I need to know it immediately or my mind gets stuck in this constant feedback loop. I wish I could turn it off and just breath or distract myself but lately not able to do this.

Im sorry to hear you went throu that, Im the same so really hate it when someone changes something on me and I dont know what is going on. I cant get my brain off of it till its sorted (I think Ive got that way due to all the planning I have to do around anything I do).

 

[taniaaust1]

I now have a copy of her full report which in spite of the word "ischemia" in three places, has a sentence which says I have "Good exercise tolerance."

That happened to me too. I did look fine right after the test and during it, I was thou then sick for 2 days after it due to the post excertional stuff slamming me later and had to be in bed. Worst still that good exercise tollerance thing is now on my medical records and has given me issues with other doctors who want to see my past tests and see it.

Im so glad to hear you got rid of the one who did that.

He said "He expects it will take at least 12 mos for me to make a good recovery." So hopefully, this plus all the info from my Endo who has the same assessment will over ride any damage from that statement by my former cardio.

I dont know if its the same where you are, but if it is, I really hope he didnt write that on down like that. Where I are, due to the disability allowance rules, one has to be not expected to recover for 2 years. A comment like could make someone loose their disability allowance here.

 

[taniaaust1]

I am annoyed with my insurance for not authorizing it (b/c I have paid a significant amount of money to keep my private insurance during my disability for as long as I was allowed by my employer) and it is also frustrating b/c my husband is driving me to all these tests and we have no idea what dates or times they will end up being]

(I think that covers it all for now.)

I soo hate insurance companies. Ive twice by actually told by my insurance they'd cover things but then afterwards, they rejected my claims. Im too ill to fight further with them so they've got away with it. It was the normal ME/CFS discrimination stuff, they cover medical support stockings but obviously discriminated against me with mine due to the ME/CFS/POTS rather then me having a more common issue that people get them for.

They also rejected my BP monitor claim..which I had to get for othostatic hypertension and dysautonomia rather then having normal hypertension. Im glad you have a husband to take care of things if you end up getting given a hard time. Insurance companies if there is any chance they may get out of having to pay up, they will try and those with uncommon things, get given a very hard time.

 

[taniaaust1]

Yes, clearly that's necessary here, and I'm glad to hear that both doctors want to do it. The most likely outcome is that they will come to an agreement. However, if they don't, and present you with a choice, I would respectfully disagree with @AndyPandy and recommend that you follow your CFS doctor's advice. This is why you have a CFS doctor, and he seems to be really on top of this.

Im going to agree with zzz with that. Ive found that doctors in their own specialities arent aware at all usually what issues ME/CFS people get even if it is under their speciality! eg the heart doctor probably isnt aware that we can more commonly (dont let that bother you, it isnt common) have viruses affecting our hearts. Often ME people can even have things happening in our bodies they think are impossible, non CFS specialists so often do not understand our bodies.

With this said thou, the heart specialist should know more what tests certainly rule that out.. but if it was me, I'd be checking online incase he's just dismissed it not realising certain issues are more common in us.