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

[Kati]

Hi @Gingergrrl, best of luck with the incoming hospitalization and tests.

One of the very best advice I have received when I found out I was likely to have ME was to lay down when I had symptoms. Chest pain= lay down. Shortness of breath = lay down. Dizziness= lay down. Tachycardia= lay down. Symptoms when i talk = stop talking and lay down. It is very good advice.

Since then, I have reorganized my life so I stay within my energy and effort envelope. i just got a scooter and a lift to put it in my car. That's the best move I could do (the scooter was 100% covered by my insurance company) because it improves my quality of life (I can get out of my house and go to nature)

When i realized I had ME was right around the time XMRV paper was announced, in the fall 2009. And the advice I got was from here, PR forums.

Edit to add: more recommendations for newbies and pacers:

1) don't do something standing if you could be sitting. For a while I had a chair in the middle of my kitchen. If I needed to tidy up or do food prep i would pull the chair and sit. (And go lay down between cooking steps)

2) don't do something sitting if you could be laying down flat. (i have an ipad, which i use in bed. Talking on the phone. Watching tv. Sometimes even eating.)

 

[Gingergrrl]

Quick update: I got an e-mail from new cardio that he spoke to my old cardio and that he would call me to schedule tests for Weds. But it did not say "Go into hospital" on Weds and I am afraid that he could be changing his plan. This is conjecture on my part but he is not available to speak to for a few hours. I called his office but they did not know the answer.

I am supposed to leave shortly for my Endo appt (and have to pay if I cancel) but now not sure what to tell my Endo re: hospital. I accepted that I was going in and told my entire family, parents, in-laws, and my CFS specialist who was thrilled and in turn told my disability company that I was going in the hospital.

I spent the entire weekend researching all the tests and now WANT all the tests including the TTT and am afraid they will be denied me. I am not comfortable doing them as an outpatient and my insurance will run out by that time. I may be panicking for nothing and maybe I am still going in but his e-mail was worded very strangely.

Honestly, it made me want to give up on this entire thing b/c I can't cope with the constant changes and stress.

 

[zzz]

I definitely told Dr. C about having CFS from EBV and he does have familiarity with it. I also told my CFS specialist what tests I will be having and he was thrilled and thought they were all very appropriate and the two will be speaking to each other.

I am very happy to hear this! The tests make sense to me too, which is why I tried to explain why they were very safe. You have verified that you will not be getting the injections for the tilt table test, so there should be no problem there either.

@zzz, This is the first point where I have to disagree with you and the three Zio Patch studies that I did definitely ruled out that I do not have ventricular tachycardia.

I am very happy to hear this too! I made a mistake by not asking you if you had been tested for this; I apologize for needlessly bringing up material that was not relevant to your case. So I don't disagree with you here; you've been tested quite thoroughly, and there's no reason to doubt the results.

One of the reasons my new cardio wants the CTA test is to rule out that there really is not an ischemia due to my family history of heart disease (I had two uncles who died of heart disease, one died instantly of a heart attack at age 46.) So, I don't think I can say definitively that there is no evidence that I do not have ischemia when my exercise ekg said that I did. I know that low blood volume is an alternate or co-morbid explanation and I plan to pursue this as well. If low blood volume is the full answer, that will be a relief but I don't think I can assume it is at this point without the testing?!

Not at all, which is why I told you I thought this was an important test to do. I agree with your cardiologist's reasoning completely, and this test sounds like the best way of determining what was causing those EKG results.

I appreciate everything you are saying but I have an ME specialist who does see the bigger picture of ME/CFS and he also does not feel that I have myocarditis.

This is certainly good news. He obviously knows a lot more about your condition than I do, so his opinions carry far more weight.

He is fully on board for the tests that I am about to have and he does feel that I have low blood volume and recommended saline IV's as did the new cardio (and the only reason we postponed was b/c my veins are bad and very hard to get the IV in.)

I am in complete agreement with all of this. Saline IVs are known to be one of the best (if not the best) treatments for low blood volume.

My new cardio is an autonomic specialist and knows about low blood volume so if he feels that dysautonmia and low blood volume are the ultimate cause, I am sure he will give me suggestions on how to treat it. And like I said, I will be discussing the myocarditis issue with him in more detail.

This all sounds very good.

Dr. Lerner is in Michigan (and I am in L.A.)

Yes, I thought this might be a problem.

I am treating the EBV with Famvir and about to be hospitalized for extensive heart testing, so not sure what else I can do?!!!

Nothing right now. You are doing everything you can, and in my opinion, you are doing a fantastic job. The points I brought up, specifically about myocarditis, were simply to ensure that these were considered appropriately. You have said that you will be discussing this with your cardiologist; that's really all that needs to be done now.

We called Dr. Lerner when I was investigating specialists and I would have to be regularly monitored by him in Michigan to see him which is not an option for me.

Yes, clearly that wouldn't work.

When you said he treats myocarditis, do you mean that he does a heart biopsy (b/c you said that is the only way to determine if it is there?)

No, he does not do heart muscle biopsies.

Or did you mean that he gives every EBV patient Valcyte?

No, he uses a variety of antiviral drugs. Sometimes he uses Valcyte, sometimes he uses other antivirals.

My ME specialist did not feel Valcyte was needed for me as I do not have active HHV-6 or CMV (only IgG on HHV-6) and nothing on CMV. Based on my history with meds and my total history, he felt that Famvir was better for me. So, we may have to disagree on this too.

Actually, I agree with your ME specialist (and you) on this point. Famvir is a very potent drug for EBV, it has fewer and milder side effects than Valcyte, and it is better tolerated by most people.

I think Dr. Lerner's studies also showed that he treated many patients who only had active EBV (like me) also with Famvir, Valtrex and other anti-virals.

Yes, he did. The only reason I brought up Valcyte was due to your declining condition, which could possibly be due to another infection, or a worsening of your EBV infection (such as through myocarditis). If it were to turn out that such was the case, than a stronger antiviral (such as Valcyte) might be needed. I am used to exploring all the possibilities like this for myself, as I've had to rely on myself completely for all my ME/CFS treatment. In retrospect, I don't think I should have brought up those points (such as the Valcyte) that are mere possibilities at this point, as there's nothing you can do about it right now, these possibilities may never materialize, and you have more than enough on your plate to deal with. As I think you know, my only concern in all of this was to see that you got the best medical care, and that your doctors were aware of all the relevant issues. But I am afraid that I was not very skillful in the way I did this, and I have caused you needless anxiety and worrying, which is the last thing you need now. For that, I deeply apologize.

 

[Little Bluestem]

My HR at that time was going into the 170's multiple times a day and my hands and arms would become numb/tingling and this is completely gone.

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.

 

[Little Bluestem]

Quick update: I got an e-mail from new cardio that he spoke to my old cardio and that he would call me to schedule tests for Weds. But it did not say "Go into hospital" on Weds and I am afraid that he could be changing his plan. This is conjecture on my part but he is not available to speak to for a few hours. I called his office but they did not know the answer.

Maybe he didn't say "Go into hospital" because he has already said it. Until you hear from him, breath.

 

[Gingergrrl]

@zzz

I am very happy to hear this! The tests make sense to me too, which is why I tried to explain why they were very safe. You have verified that you will not be getting the injections for the tilt table test, so there should be no problem there either. I made a mistake by not asking you if you had been tested for this; I apologize for needlessly bringing up material that was not relevant to your case. So I don't disagree with you here; you've been tested quite thoroughly, and there's no reason to doubt the results.

Thank you and it is okay! You are incredibly thorough with your research (even more than me- and I can get obsessive with it!) and I appreciate the info even though it scares or overwhelms me sometimes.

Nothing right now. You are doing everything you can, and in my opinion, you are doing a fantastic job. The points I brought up, specifically about myocarditis, were simply to ensure that these were considered appropriately. You have said that you will be discussing this with your cardiologist; that's really all that needs to be done now.

Both cardiologists and my CFS specialist strongly feel that I do not have myocarditis based on all the testing I have had thus far. I don't disagree though that the EBV virus has affected my entire body and has probably infiltrated all of the tissues including my heart and brain but from the traditional medicine perspective & tests, I do not have an active infection in my heart so not sure there is anything else I can pursue on this one!

Actually, I agree with your ME specialist (and you) on this point. Famvir is a very potent drug for EBV, it has fewer and milder side effects than Valcyte, and it is better tolerated by most people.

I am tolerating the Famvir extremely well and my plan is to stay on it for at least six months as recommended by my CFS specialist. I have been on it for about 1.5 months so far.

The only reason I brought up Valcyte was due to your declining condition, which could possibly be due to another infection, or a worsening of your EBV infection (such as through myocarditis). If it were to turn out that such was the case, than a stronger antiviral (such as Valcyte) might be needed. I am used to exploring all the possibilities like this for myself, as I've had to rely on myself completely for all my ME/CFS treatment. In retrospect, I don't think I should have brought up those points (such as the Valcyte) that are mere possibilities at this point, as there's nothing you can do about it right now, these possibilities may never materialize, and you have more than enough on your plate to deal with.

It's okay and I discussed Valcyte with my CFS doctor extensively back in July. It was his initial recommendation before my bloodwork had returned. However, once it returned and he saw I was positive only for active EBV, HSV1, and VZV (and negative for HHV-6 and CMV) he no longer felt Valcyte was the best med for me. He said I could choose between Valtrex and Famvir and from the extensive research I had done at that point, I chose Famvir.

As I think you know, my only concern in all of this was to see that you got the best medical care, and that your doctors were aware of all the relevant issues. But I am afraid that I was not very skillful in the way I did this, and I have caused you needless anxiety and worrying, which is the last thing you need now. For that, I deeply apologize.

@zzz, I already told you but want to reiterate that I fully accept your apology and I know that you are really trying to help me (and have helped me!!!) tremendously. If I was not feeling so poor and trying to coordinate all these tests and hospitalization, I would not be in such an anxious state. You have been a good friend, and I am very grateful.

 

[Gingergrrl]

@Kati

One of the very best advice I have received when I found out I was likely to have ME was to lay down when I had symptoms. Chest pain= lay down. Shortness of breath = lay down. Dizziness= lay down. Tachycardia= lay down. Symptoms when i talk = stop talking and lay down. It is very good advice.

Since then, I have reorganized my life so I stay within my energy and effort envelope. i just got a scooter and a lift to put it in my car. That's the best move I could do (the scooter was 100% covered by my insurance company) because it improves my quality of life (I can get out of my house and go to nature)

Edit to add: more recommendations for newbies and pacers:

1) don't do something standing if you could be sitting. For a while I had a chair in the middle of my kitchen. If I needed to tidy up or do food prep i would pull the chair and sit. (And go lay down between cooking steps)

2) don't do something sitting if you could be laying down flat. (i have an ipad, which i use in bed. Talking on the phone. Watching tv. Sometimes even eating.)

@Kati,Your advice is great and I agree with you that every time I can do something sitting or lying down versus standing, I always feel better. This morning when I stood up from bed my HR was in the 130's so as soon as I took my morning meds (there are four now ) I laid back down and trying to drink water and just rest instead of immediately starting on the things that I need to do.

How do you get the scooter in and out of your car?!!! I have a very small car and we just ordered a folding wheelchair (it hasn't arrived yet) and hoping this will fit in my car. But it will only be usable when someone is with me to lift, assemble and push it. So most likely, we will keep it in my husband's car which is bigger and then when I go somewhere with him, he can assemble the wheelchair. It is supposed to be lightweight so we'll see when it arrives.

 

[Gingergrrl]

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.

@Little Bluestem I am not sure if there is a correlation but can tell you what I have noticed in myself. When I used to have the episodes of very high tachycardia (up into the 170's) which no longer occur b/c I am on Atenolol, my hands would be numb and tingly and my interpretation was that the blood was trying to go to my heart and had left my hands which became numb. When my HR goes into the 120's to 150's, this does not happen as much. Although my symptoms have shifted greatly, at present, I feel my heart is okay when I am sleeping/lying flat and struggling when I stand up and walk around.

Maybe he didn't say "Go into hospital" because he has already said it. Until you hear from him, breath.

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.

 

[Gingergrrl]

Latest update:

I finally spoke with Dr. C last night and it turns out that I will be having the first two tests as an outpatient (Tues and Weds) and then be hospitalized Thurs and Fri for the remainder of the tests. A woman is supposed to call me this morning to tell me where to go and what to do. She has not called yet but it sounds like the CT angiogram is the first test for later today.

Dr. C said that the reason for the first two tests being outpatient was a combination of what my insurance would approve and the buildings where the different tests were located. I believed him and now viewing this as a positive, in the sense that all the tests and med changes that he wants to try will now be spread out over four days (instead of cramming them into two days) so I will have more time to recover.

The part that bothered me (but I am trying to let it go) is how he reacted when I asked him what my former cardio had said re: why she didn't tell me there had been ischemia on my exercise ekg? I was not trying to get him to bad-mouth her (and I had told him at the appt how much I liked her and appreciated her referring me to him.) I just wanted an answer scientifically as to her interpretation (i.e. did she say she felt my result was a false positive so she felt it was insignificant, etc.) but he clearly would not go there. He said something like, "We are never going to get an answer or resolve this issue and we have a plan now and just need to move forward with it."

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." When I read that, I literally didn't know whether to laugh or cry. So I told Dr. C that this really bothered me b/c it could go to my disability company and harm my case. He agreed and actually laughed at that sentence and said, "You are right, how can you have good exercise tolerance when you become short of breath just walking across the room?"

So, I knew he still understood the level of my disability and nothing had changed and he just simply couldn't bad-mouth a colleague which I understand. I asked him if I, as the patient, have the right to switch doctors, and he said absolutely yes I do so he is now officially my new cardio (vs. just seeing him for a one time consult.) He is at least 30 yrs older than my previous cardio and much more experienced. I became tearful on the phone and told him that I thank God I found him because otherwise I would never have seen those test results or known anything was wrong or gotten further testing.

As far as my disability, my CFS specialist wrote me a letter (for work & disability co) which said I am "Profoundly ill with multiple disabling medical problems and that my symptom complex make me totally unable to work." 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.

 

[Kati]

@Kati



@Kati,Your advice is great and I agree with you that every time I can do something sitting or lying down versus standing, I always feel better. This morning when I stood up from bed my HR was in the 130's so as soon as I took my morning meds (there are four now ) I laid back down and trying to drink water and just rest instead of immediately starting on the things that I need to do.

How do you get the scooter in and out of your car?!!! I have a very small car and we just ordered a folding wheelchair (it hasn't arrived yet) and hoping this will fit in my car. But it will only be usable when someone is with me to lift, assemble and push it. So most likely, we will keep it in my husband's car which is bigger and then when I go somewhere with him, he can assemble the wheelchair. It is supposed to be lightweight so we'll see when it arrives.

Hi @Gingergrrl I wish you luck for your tests today and the rest of the week. i will be thinking of you.

Sorry for the following which is off-topic- if anyone want to discuss this please start a new thread.
As for your question, about the lift, I needed a new car, after stretching my 20year old Honda the best i could (it served me very, very well ) so I bought a Caravan, because I needed to fit the scooter.

i got a Bruno Curb Sider installed in it, a used one (the brand new ones are expensive, and there is a local company that offers a door to door installation service for used medical equipment). It's the very best thing I could have done. i am very happy. As alternative, you could use a ramp for a caravan, however the ramp is too difficult for me to set in place, too heavy and I am on my own.

In the end, due to my disability, i can write off my taxes 20% off the cost of the Caravan (it's used, 2006) and the cost of the lift as medical expenses, which will help me a lot ( the scooter was 'free' from my insurances). The fact that i have mobility improves my quality of life by a whole lot, there is much more I can do, like grocery shop and go to nature. ( crowds, noisy places are too exhausting for me).

 

[Gingergrrl]

@Kati, Thank you for the info on the scooter and lift and if people want to discuss it further we can create a new thread. I do have a tendency to go off topic with questions so I will get this back on track now .

So, the plan for my testing has completely changed again. No one called me at 9 am as I'd been told so I waited almost two hours and then called the Dr's office. The woman told me that my insurance so far as not authorized approval of the CTA (angiogram scan) so nothing is arranged for today. However, they did authorize the ventilation/perfusion scan (lungs) and that will be tomorrow at 9 am.

I asked her about the hospitalization on Th/Fri for the other tests and she said that the Dr had not told her anything about this (so she had not even tried yet for the insurance auth on the hospitalization or the other tests, TTT, ACTH stim, etc.) She said the doctors often do not understand this process and that she will talk to him as soon as he gets into the office in a few hours.

So I am still in limbo (except for knowing that I have the lung test as an outpatient tomorrow morning.) It is frustrating b/c I woke up really early this morning to be prepared and the Dr promised me that the heart CT would be the very first test which now it isn't. 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.)

 

[Kati]

Arrrgggh @insurance authorization, it's so hard to understance that the insurer does not want to pay. i mean wht do they suggest? have they seen you struggling for air? It's so frustrating that not only you need to battle for health care, you need to fight with the insurance or your dr has to on top of seeing patients.

At least in Canada we don't have this issue, at least most of the time.

 

[Gingergrrl]

@Kati, I worked in a hospital based program for 12 years in mental health and the doctors that I worked with literally were forced to spend more time battling with the insurance for authorizations than treating the patients. I had never seen anything like it.

This will slightly go off topic again but we had patients who were acutely suicidal, floridly psychotic, or severely gravely disabled who voluntarily were begging to be hospitalized for treatment (both inpatient and outpatient treatment) and the insurance flat out told them no. The insurance companies in the U.S. literally do not care if you live or die so the fact that I cannot breath is irrelevant to them. It's the main downside of the U.S. system.

I see many doctors who I pay 100% privately for appts and insurance is not involved (except for blood work and medications.) But for the kinds of tests and hospitalization that my new cardio wants to do, unless you are a millionaire, you are at the mercy of your insurance company. And until Sept 30th, I actually have very good insurance, it is worse for people with bad insurance or no insurance- they don't stand a chance.

 

[jimells]

I became tearful on the phone and told him that I thank God I found him ...

Wow, a doctor actually talked to you on the phone? I can't recall ever having that experience. No doctor I've ever had to deal with has ever done that. They always require that I call the office which sends me to the nurse's voicemail. The nurse gives my message to the doctor (maybe), who gives their answer to the nurse, who calls and leaves a message on my voicemail. I view the whole procedure as being designed to deter phone calls from patients. After all, they don't seem to have a way to bill anybody for phone call time...

As far as test results go, immediately after the test I go to the medical records department and request that they mail results directly to me. I usually see the lab results before the doctors!

I've had both the tilt table test and the ACTH stim test. Both tests were uneventful, and neither showed any problems. The worse part was transportation. I had to travel 250 miles round trip for the TTT, but only 80 miles for the ACTH stim test. Sometimes there are disadvantages to living 120 miles from the nearest "big city" of 30,000 people. But not often.

So, the plan for my testing has completely changed again.

ARRGGGHHH!!! This is soooo typical. I've had very few medical adventures that went according to plan. When I had the ACTH stim test, no one bothered to tell the lab people that I needed to have blood drawn twice - I had to arrange that myself. But I'm guessing you are used to following up, every step of the way, on what they are supposed to be doing.

The insurance companies in the U.S. literally do not care if you live or die

Actually I'm quite sure they would prefer my death. It would be far more profitable for them.

 

[Gingergrrl]

@jimells

Wow, a doctor actually talked to you on the phone? I can't recall ever having that experience. No doctor I've ever had to deal with has ever done that. They always require that I call the office which sends me to the nurse's voicemail. The nurse gives my message to the doctor (maybe), who gives their answer to the nurse, who calls and leaves a message on my voicemail. I view the whole procedure as being designed to deter phone calls from patients. After all, they don't seem to have a way to bill anybody for phone call time...

My experiences have been mixed in the sense that I've had some doctors that are literally impossible to reach on the phone (or even reach a live person at their office period!) and then never call you back all the way to the other extreme of doctors who have given me their cell phone number. I think part of it is living in a bigger city with more choices (you mentioned living in a smaller town) and part of it is because I am a social worker and once in a while, I meet a doctor who treats me as a colleague with respect. But I've had doctors who clearly dislike social workers as well and seen both sides of the coin.

As far as test results go, immediately after the test I go to the medical records department and request that they mail results directly to me. I usually see the lab results before the doctors!

This is very smart on your behalf and when I have tests at certain places, I can easily access the results. But other places, you are at the mercy of the doctor's office giving you that results which often falls through.

I've had both the tilt table test and the ACTH stim test. Both tests were uneventful, and neither showed any problems.

That's good and reassuring to me as I know some people have had horrible experiences with the TTT. At this point, I don't even know if my insurance is approving this test.

ARRGGGHHH!!! This is soooo typical. I've had very few medical adventures that went according to plan. When I had the ACTH stim test, no one bothered to tell the lab people that I needed to have blood drawn twice - I had to arrange that myself. But I'm guessing you are used to following up, every step of the way, on what they are supposed to be doing.

I try to follow up but it is so hard when I am not feeling well. I am confident though that this doctor/hospital will do the ACTH stim test correctly if I ever get to that point.

Actually I'm quite sure they would prefer my death. It would be far more profitable for them.

I hate to say it but I agree with you. I think the insurance companies would prefer that we all die do they do not have to pay any money and can just use that money to give each other bonuses.

 

[Gingergrrl]

I am so frustrated, frightened and confused that I am ready to give up on this entire quest. I am hoping you guys can advise me how to proceed and I am open to any and all feedback.

My insurance is not authorizing the CTA (heart scan) or hospitalization. Dr. C's office spent all day trying to arrange the other three tests as an outpatient (lung scan, TTT and ACTH stim test.) However, 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. Now this doesn't seem to be an option after I told my entire family, friends, and disability co that I was going in.

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

As the patient, I am incredibly confused b/c I am caught in the middle, I am not a doctor to know who is correct here, AND I am getting screwed over by my insurance. 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.

So after talking to my husband, we decided that the only solution was that these two doctors speak with each other. I was crying and shaking at this point from the sheer level of information that I was trying to process. Both already told me that they wanted to speak with each other (and both are VERY nice people) so I forwarded Dr. K's e-mail to Dr. C with his permission (just the one paragraph, nothing more) along with some questions and asked (begged!!!) that they speak to each other before I proceed.

The office was trying to give me all these crazy outpatient appt times (i.e. the TTT would be on Fri at 6:30 am) and there is no way I can get there that early b/c our daughter doesn't get on her school bus until later and I no longer drive (or walk!) Plus, I no longer want to do a TTT as an outpatient before I have even done the heart CT scan. The whole thing is so crazy, I am ready to crawl into a hole.

This is so much work, I have spent all day on this, and I am not well enough to be this ill.

 

[daisybell]

I am so sorry to hear this..
Hopefully your two docs will come up with a workable plan for you in consultation with each other.
Hang in there...
Insurance companies are just awful.

 

[AndyPandy]

Just floating some quick ideas off the top of my head @Gingergrrl

1. Get the cardio and CFS specialists to talk. If it comes down to it, go with the cardio's opinion as he is the cardio specialist.

2. Is the insurance decision appellable? If so, get your hubby to look into this if you are not up to it. You have until 30/9 so push them on this.

3. Get the cardio to come up with a "Plan B". What did they do in the days before CT heart scans were available?

4. Think about other options for your step daughter on Friday eg get someone else to take her to school. Sleepover at friends then go to school? Take day off school?

Sending you hugs

 

[AndyPandy]

@Gingergrrl

Forgot to add:

Given that the CT heart scan might not be available to you now, what is the cardio doctor's current assessment of the medical risks to you if you:
a. go ahead with the other testing without the CT heart scan?
b. undertake the other tests as an outpatient?

I think these answers are important to your decision.

Best wishes

 

[Kati]

What @AndyPandy said.
They are all reasonnable suggestions. Here are more:

Think one test at a time.

Talk with the cardiologist to see if going through emergency with cardiac symptoms would not ' facilitate' hospitalization and test approval. Here in Canada you get prioritized differently if you show up in emergency.

Myocarditis is only one possibility. Only through appropriate testing can you get adequate diagnosis.

Could you consult a lawyer in regards to your insurance's decision?

Best, Kati