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

[MeSci]

Only just caught up and hope I'm not too late to say I am sending positive thoughts, @Gingergrrl. I'm doing it anyway!

Appalled at what you have had to endure.

 

[JoanDublin]

My head is in a complete spin reading this thread. You poor thing @Gingergrrl I cannot believe what you are having to go through. Like others I wanted to send you loads of positive vibes and best wishes. Thinking of you and hoping you get some answers and resolutions

 

[Gingergrrl]

Thanks to everyone for all your prayers and good wishes and we are leaving for the ER in about 15 min. I am guardedly hopeful it will go as planned and hoping for internet access at the hospital.

 

[Gingergrrl]

I wanted to let you guys know that everything worked out perfectly as planned! The head doctor of the ER knew I was coming (which I didn't know!) and within three hours I was moved from the ER to my room where I am now.

They had no problem putting in the IV and did some blood tests, an EKG, and chest x-Ray. They also have me on a tiny amount of oxygen.

I will be having the heart scan later today and just briefly met w/my cardio and verified I can take my own meds. I guess I have to get them approved by the pharmacy staff. My husband is getting my suitcase from the car now.

If all goes well I will have the tilt table test tomorrow morning and then the lung scan. They've asked me multiple times about vaccines which I have declined and is the last thing I need. My CFS dr actually told me I should NOT have any vaccines for a long time if ever.

I feel so grateful that my new cardio was able to make this happen and it will cost my insurance more this way than if they had just approved the CTA scan as an outpatient procedure. But that is their problem.

 

[daisybell]

Woo hoo! Best of luck with all the tests.

 

[JoanDublin]

Excellent news!

 

[Gingergrrl]

Thanks and in limbo now waiting for the first test. The IV from the ER was too small so they had to insert a bigger one (for the contrast dye that I will be having for the test) and it took multiple people to get it in b/c my veins move around. So now I have an IV in each arm and it was really painful. Good times .

 

[Kati]

Hi @Gingergrrl

So glad you are tucked in a hospital room, awaiting for tests. You are in good hands.

 

[Sea]

So glad to hear you're getting what you need Gingergrrl. It is just ludicrous that an insurance company can decline what a specialist says is necessary!

 

[Gingergrrl]

@Sea in the US, the insurance company holds the ultimate authority and power. The only way around it is if you are ultra wealthy and can pay privately for anything you want or, in this case, I found a doctor who advocated for me and found a creative way to bypass insurance. This is the first time I have had a doctor go to this length for me to fight insurance in my entire life.

I am now back in my room after the CTA (heart scan). The part of the scan that was scary was when they injected the contrast dye. It was very hot and I was instructed to hold my breath at the same time. I got really dizzy and shaky but am now back on the oxygen and feeling okay.

My in-laws sent me some beautiful orchids that were in my room when I came back from test. Hopefully my doctor will have the results later tonight and I am supposed to do the TTT early tomorrow morning.

 

[Kati]

Cheering for you from the sideline! Great to hear good drs still happen in this world (of course they do)

 

[Gamboa]

Hi Gingergrrl,

I've not been on PR for a while and just came across this thread. I am so shocked at what you have gone through just to get a heart CT scan. I am so glad that it has finally been done and hopefully they have the results by now.

I live in Ottawa, Canada and I had no problem getting the test done ASAP soon after I had a "positive electrocardiographic response for myocardial ischemia" while doing an ECG stress test. I am slim, don't smoke, and had none of the warning signs of cardiac disease and the doctors thought it was most likely a false negative result yet they still requested that the test be done. The positive result for ischemia was,as predicted, a false negative, and my arteries showed up as being clear on the CTA.

Given your degree of disability and possible symptoms of cardiac disease, I would have thought would have been done RIGHT AWAY for you. I can't believe that they actually didn't rush you in immediately for the test. What does the insurance company wait for? Wouldn't it cost more for them to pay for someone the sicker they get?

I have also had the tilt table testing, with additional autonomic function testing where the doctor injected all different drugs into me while I was still hooked up to all the heart equipment. I have done the ATCH stimulation testing as well. You might not need to do any of that however if the CT scan you just did shows a blockage. It sounds strange to actually wish this for you, but perhaps it would be good if they found a blocked cardiac artery since then they could unblock it with angioplasty/stent and you would feel much better-- or as good as one can feel with ME/CFS. I know a few people, including my mother, who have had cardiac stents put in, and they now feel great.

Good luck with the TTT tomorrow I if they still go ahead with it). Looking forward to the updates.

Gamboa

 

[Gingergrrl]

@Gamboa To answer your question, the insurance companies would rather we all die than pay for any tests.

Thank you for the kind words and I am glad your ischemia was a false positive. My cardio stopped by my room for a brief second but CTA results not in yet. He thinks they will be in before TTT tomorrow and said I will be here at least one more night and will meet w/a pulmonologist and endocrinologist.

I had a whole list of questions for him but he said we'd do that tomorrow b/c he was in a rush. I showed him all the unexplained bruises on my legs and he wants to look into that too.

I spoke w/my CFS Dr by email and he said the CTA will rule out all traditional causes of ischemia such as a blockage or build up in arteries (which is good to rule out from my family history.)

If that is ruled out, then more likely ischemia was a false positive, from low blood volume/autonomic cause, or from the virus. At that point the two doctors will have to talk to each other to figure out a plan b/c they each have separate opinions and expertise.

I am glad your mom was so greatly helped by the stent! I am still hoping there is no cardiac problem and can all be treated with anti virals or by autonomic means.

It is so hard waiting for answers and my husband left to go pick up our daughter so I am getting more anxious .

 

[taniaaust1]

Im so very glad you have such a great doctor, it sounds like you are in exceptional hands there.

I am now back in my room after the CTA (heart scan). The part of the scan that was scary was when they injected the contrast dye. It was very hot and I was instructed to hold my breath at the same time.

Interesting, for myself it felt very very cold.

 

[taniaaust1]

I am glad your mom was so greatly helped by the stent! I am still hoping there is no cardiac problem and can all be treated with anti virals or by autonomic means..

I'd far prefer to need a stent then have this dysautonomia. Dysautonomia thou it can be treated (some can have such successful treatment that they can get back to work) but on the other hand iit can also be very hard to treat in others. (thou seeing you have great doctors, Im sure they will do a far better job at treating yours if that is found then the treatment I get).

I hope whatever is found with you is whatever is easier to treat in your own case. Best luck.

 

[WillowJ]

@Gingergrrl been thinking of you

 

[MeSci]

@Gamboa To answer your question, the insurance companies would rather we all die than pay for any tests.

Thank you for the kind words and I am glad your ischemia was a false positive. My cardio stopped by my room for a brief second but CTA results not in yet. He thinks they will be in before TTT tomorrow and said I will be here at least one more night and will meet w/a pulmonologist and endocrinologist.

I had a whole list of questions for him but he said we'd do that tomorrow b/c he was in a rush. I showed him all the unexplained bruises on my legs and he wants to look into that too.

I spoke w/my CFS Dr by email and he said the CTA will rule out all traditional causes of ischemia such as a blockage or build up in arteries (which is good to rule out from my family history.)

If that is ruled out, then more likely ischemia was a false positive, from low blood volume/autonomic cause, or from the virus. At that point the two doctors will have to talk to each other to figure out a plan b/c they each have separate opinions and expertise.

I am glad your mom was so greatly helped by the stent! I am still hoping there is no cardiac problem and can all be treated with anti virals or by autonomic means.

It is so hard waiting for answers and my husband left to go pick up our daughter so I am getting more anxious .

I'm so glad to hear that everything was sorted out for you. Still sending you 'good vibes' for the rest of the tests.

Wow - a doctor who communicates by email! So there are doctors who realise it's the 21st century after all!

 

[Gingergrrl]

Thank you to everyone for all your support and posts and they are giving me courage here in the hospital. I have not been able to sleep b/c it is noisy & bright here plus it was freezing cold.

They just came to do my vitals and nurse said it was only 55 degrees in here. It turned out I had a thermostat to control temp but I didn't know. I also can't sleep b/c I am hooked to Heart monitors and have IV's in arm and very uncomfortable and hard to move.

It is also weird w/my husband not here and I get scared in here by myself which I know sounds pathetic. I am worried if the CTA shows something bad but also worried it will be totally normal and no one will figure out the real cause of my ischemia and shortness of breath beyond CFS.

 

[zzz]

Thank you to everyone for all your support and posts and they are giving me courage here in the hospital. I have not been able to sleep b/c it is noisy & bright here plus it was freezing cold.

Yes, hospitals are terrible places for sleeping, especially if you have an illness with a sleep disorder.

It is also weird w/my husband not here and I get scared in here by myself which I know sounds pathetic.

No, it doesn't sound pathetic at all; it sounds completely normal. You're in a strange environment, you're not feeling well, and under a lot of stress - and the most important person in your life isn't there to support you. Please don't blame yourself for being scared. Think of all you've gotten through up until now, and that was no minor feat. We all have great confidence in you; it's just natural to feel shaky at times.

I am worried if the CTA shows something bad but also worried it will be totally normal and no one will figure out the real cause of my ischemia and shortness of breath beyond CFS.

Both situations are workable. They're just overwhelming if you think of everything that could go wrong all at once. We get to take things one moment at a time. I've seen how stressful this is on you, but I've also seen great strength. Sometimes you get frustrated enough that you almost throw in the towel, but you never do. Just hang in there, and you'll get through this.

You also have some advantages over those of us who've had this illness for decades. From a lot of data, it's clear that this illness is easier to treat and drive into remission in the early years, which is where you are. Also, when a lot of us got sick, there was nothing on the horizon. Now research is finally coming together, and more and more effective treatments are being found.

There's no question that this is a horribly difficult illness to work through, and the possibility of ischemia just adds to that. But you've seen all sorts of people on this site work through all sorts of things. Everyone gets discouraged from time to time; we're all human. But those who make progress are the ones who don't give up despite all the discouragements. You have this in you, and if you can connect with your inner strength, it will make facing these challenges much easier.

I am literally falling asleep now, so I will have to close. But take care, and remember that you have so many people send good wishes and feelings to you. If you relax, you can actually feel these. So try to get some sleep, and you'll deal with tomorrow when it comes.

 

[Gingergrrl]

@zzz thank you and your words were very comforting. I was pretty much awake all night and then the endocrinologist came in to consult with me before 7 am!

She was lovely and got all the info on my thyroid issues and understood without any judgement how mono/EBV led to the down fall of my health and was happy to learn of OMI and wrote down the info so she has a place to refer pts.

She will do the ACTH stim test tomorrow and said it is the absolute gold standard test for adrenal functioning. She said if it is normal than my adrenals are okay but if not, then she will explain the options for treatment.

She said it is best to do this test as an inpatient so they can draw the blood at the exact intervals and get to lab immediately. So from an endocrine perspective, if there is an issue, she will find it.

I am much more worried about the cardiac stuff and wish I knew the CTA results. I can't eat before TTT and they've taken so much blood that my blood volume should be low so hoping the TTT shows what if needs to!

Thank you to everyone again who is following my saga and it helps me to write it as well as hear all your wonderful feedback and support.