Disappointing Trip To Cardiologist

[Rafiki]

I live in Kenya and recently returned to US (Birmingham, AL) to try and get to the bottom of all the weird problems I have been experiencing for the past 10 weeks. I posted in detail about a month ago, but basically following an upper respiratory infection then an ear infection a month later I have had continuous problems with severe fatigue, BP bottoming out and pulse increasing upon standing, and chest discomfort. I have been so dizzy and weak that I have been mainly flat on my back in bed or on couch since that is the only place I feel halfway good. My organization paid to fly me first class with a nurse from Kenya (a 29 hour trip) and I made the trip with only a couple of dizzy spells which resolved as soon as I could stretch out. Anyway, my first Dr. appointment included an echo where they found pericardial effusion (fluid around the heart). The PCP felt like it would explain my symptoms and I was excited to know I finally had an answer. Yesterday I went to the cardiologist. The nurse took my BP lying down (140/100) and standing (110/70). That is very high for me. While hospitalized in Nairobi it was consitently 100/70 supine and often 80/50 or even 70/0 standing. When the cardio came in he said my BP problems had resolved! He didn't want to start me on meds for high BP yet, but would recheck in a month. He also said the fluid around the heart was a non-issue and was not constricting the heart. He had no idea why I was feeling so bad and having chest pain. He said I needed to give it time, exercise, and not drink caffeine. It was all I could do not to cry and scream at the same time! I protested I don't have time (I'm trying to get back to Nairobi to my family), taking a shower feels like running a mile and I have to lie down to rest, and I don't drink caffeine in any form. He finally agreed to another test (arteriogram) to check the heart but when pressed about next step if nothing shows up, admitted to not knowing. When I asked him about dysautonomia he dismissed it and referred to one doctor's work in the area as "magic". All in all it was very frustrating.

There is a Autonomic Center here in Birmingham and I went in person to book an appointment. I can't be seen until Sept. 18th, but when I explained the urgency they were very compassionate and agreed to try and work me in as soon as possible. I have a son in Nairobi who is a junior in high school and if I can not return by end of September, our mission board has said my husband and son will need to come to US to be with me. As much as I miss them, I do not want to disrupt Chris's school year.

I guess this post is really venting because I'm so frustrated. There has been so many blood tests and all are fine. I don't know what else to do or what other direction to go in. If anyone has any advice I would appreciate it! I have been in the states for almost 2 weeks and have only left my mother's house to go to the doctors. I tried to go to Walmart once and lasted about 15 minutes and had to get back to a supine position. That is frustration when you live in a place where there is no place to shop and you come to the land of 24 hour shopping!

Thanks,

Debbie

[janiedelite]

Hi Debbie,

I'm so sorry for the lack of answers you got with the cardiologist. Unfortunately, most of us here have had appointments like that too. It just must be so frustrating knowing how far you travelled to try to get answers. I would have thought he'd spend more time trying to help you. What a shame!

It sounds like the autonomic clinic is the way to go. Maybe someone who's been to that clinic in Birmingham can pitch in their two cents. I guess I'd keep calling them daily to see if there are any cancellations, reminding them of my urgency. Sounds like you're doing that already. I think that usually autonomic centers are used to complex, hard to solve, problems and are more likely to try to rule out as many causes of your symptoms as possible, so that even if you don't have a neurological issue, hopefully they'd help you anyway.

I really hope you can get some answers.

Take care, Janie