Monday, June 8, 2009

Can I Get a Referral to a Cardiologist Please?!!

It's the latest saga of my cfs journey. Ten days ago I spoke with my doctor who agreed I needed to see a cardiologist to get, among other tests, a tilt table test so we can determine if there are any changes to my heart and whether I have dysautonomia or POTS (a great website for POTS is

Because this doctor isn't located in the Bay Area he asked me to look up cardiologists who do this sort of testing and email his nurse. Simple. At least one would think it would be simple. I found a cardiologist, asked what they need in terms of the referral and then sent an email to the nurse with detailed instructions on what they needed.

A week later I called the cardiologist's office only to discover the referral was never faxed to them. I emailed the nurse again with the instructions to make it easy as I know the nurse is very busy. I got an email back saying the referral was faxed that day.

The next morning I spoke with someone at the cardiologists office because the referral packet was incomplete. She was very nice, very helpful and upon hearing my symptoms agreed I needed to be seen and once they get the information from my doctor's office would schedule an appointment asap. She said the doctor's are extremely busy and booked out until August but they would get me in sooner but they needed the information from my doctor's office. We both agreed to contact the nurse. Late that afternoon I received an email from the nurse saying the referral was refaxed with the correct information.

Today I got a call from the cardiologist's office just to see how I was doing! I thought that was so nice. They were checking up on me to see if I was okay. It turns out my doctor's office still hadn't faxed the correct information!!! I tried calling but they don't answer phones on Monday's after 12 so I had to send another email.

I've been patient with having to remind said nurse about calling the pharmacy to fill prescriptions, etc...And I've been very patient. But when it comes to my heart its not okay for this sort of nonsense to go on. I have chest pain,tachycardia, light headedness, palpitations, and my left foot turns a dusky color when I sit.

I've read that people with these heart issues find they resolve once they've been on Valcyte for about 4 months but mine aren't so I want to find out why.

One thing is clear though. I need to find a local doctor. I wish Dr. Kliman were still alive. He would have been right on top of this.

Yesterday I was able to get out of the house for a few hours. We did some errands including a local Crate and Barrel Outlet. I took advantage of the couches that were for sale. I kept laying down to recharge. Luckily the sales associates thought I was just trying out the couches....But I'm paying for my day yesterday with a bad crash today.


Pris said...

I find the referral process to be so spotty and time consuming. A friend recovering from cancer who needed a physician in another area nearly pulled her hair out getting all the information over.

Glad you did get out.

If you get a chance, look at my today's blog about the death of my CFIDS doctor of 8 years. Tremendous grief.

mojojojo said...

I developed POTS gradually as my CFS went along. Not as a result of taking an antiviral.

It is still one of the peskier issues for me.

IMHO if you know you have POTS (can't stand up without feeling all the blood pool down, HR increases >100 when you stand), I wouldn't even bother with the cardiologist unless you're ready to take something like florinef which will just further suppress your endocrinology.

I would go see an integrative doc or even an endocrinologist, request the neuroadrenal panel by neuroscience, and see where your cortisol curve it.

Blood pressure abnormalities can be contributed by kidney detoxification too...which might de-regulate the renin-angiotensin balance.

I would be very surprised if your HPA axis isn't the major culprit though. Pituitary release vasopressin, adrenal releases aldosterone. When the balance is overturned, your kidneys won't retain salt & water, which can express as orthostatic intolerance.

Renee said...

I am so sorry you are going through this now too. It is so frustrating to deal with all the paperwork and middle men/women. It should be easier for people who are so get the help they need when they need it.
Lifting you up in prayer.
we need to advocate for ourselves and have an advocate by our side.

Sue Jackson said...

I love Crate and Barrel! But I can relate to your shopping-related crash today. I hit Target yesterday after the Lyme doctor and felt awful this morning.

Sorry about all the hassles - been there! - but it sounds like you've found a good, understanding cardiologist to see. Hope you get in soon.


cfswarrior said...

Hi Pris-

People who are really ill shouldn't have to spend so much energy with referrals. That was one of the good things about the HMO I used to have. It was great for many, many things but very bad when it came to CFS otherwise I would have stayed on their plan.

I read your blog today. I'm so sorry to hear about the death of your CFIDS doctor. I can understand the grief you are experiencing. I wish you peace.


cfswarrior said...

Hi Joey-

I think you're spot on about the HPA stuff. I've been trying to get my cfs doctor to run tests but he hasn't agreed to it so far which is another reason to find another doc.

I looked up the test you mentioned. It looks like a good one to get. Now I just need to find a doctor who will order it.

In 2005 I had a 24 hour saliva cortisol test and my adrenal functioning was a mess even back then and I was functioning pretty well.

Interesting about the kidney detox-I'd like to hear more about that.

Thanks for input.


cfswarrior said...

Hi Renee-

Wouldn't an advocate be nice for times like this? Or even a case manager. It gets exhausting spending energy on navigating the medical system when we need to be conserving energy.

Thank you for the prayers. You continue to be in mine as well.


cfswarrior said...

Hi Sue-

You would love this Crate and Barrel Outlet. It's huge with great bargains. Its funny-I love Target but haven't quite been able to make it that far out.

Yes-I think this cardiologist will be wonderful-if I can ever get the referral to go through. If my doctor wasn't over an hour away I'd drive myself there and pick it up!

I hope things went well with the lyme doctor today and that your crash doesnt' last long...