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 http://www.dinet.org).
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.