This all began two weeks ago. There have been several visits to the ER, tachycardia and blood pressure swings. I had another allergic reaction to a new medication. I suddenly got new lumps all over my left forearm. The primary care doctor could not identify the lumps. I need a new oncologist, cardiologist and we are still on the hunt for an oral surgeon and dentures. On and on it goes.
My husband and I really tried to get appointments set up. He took two days off of work . There is no way to hurry offices that tell you it may take up to 48 hours to return messages. Then if one insists they don’t have correct information to send your records…..it takes much longer to get appointments, even with two people making calls and follow ups. Serious health problems or not, clinics, hospitals, doctors and the medical system works at what can be an excruciatingly slow pace.
The one appointment we were able to make was with another cardiologist. I have lost count to tell you which number he would be, fourth I think. My second cardiologist did an echocardiogram several months ago. He wanted me to have an angioplasty, a highly invasive procedure. He also did not want to answer any questions I had as to why. He wouldn’t address my complicated medical problems, like the NETCarcinoid/Carcinoid Syndrome, which can have a heart problem cardiologists call Carcinoid Heart. Nor did he want to talk about my anaphylactic shock to blue contrast dye (iodine), neurological issues, tachycardia, blood pressure etc. I delivered a well deserved speech to him. He did manage to leave a somewhat negative remark on my chart. Oh, the kind that may allow an insurance company to deny payment. So, getting this second opinion was absolutely necessary. Still, after the last two weeks, I was less than grateful yesterday to be seeing another new doctor.
The new cardiologist started out to be golden. Any doctor who begins an appointment by stating his first obligation and responsibility is to “DO NO HARM” and then….and only then…to treat me….is a keeper. He went through every detail he could and rendered a very different opinion and option than any previous cardiologist. We agreed upon a non-invasive low risk procedure that would give 90-95% accuracy as to whether I have any real artery blockages. He doubts I do. His nurse did an extensive history and questioning of all my symptoms. (I adore nurses) He definitely believes I have never had a heart attack, silent or otherwise. He wishes his other patients had blood work with my low triglycerides, glucose, cholesterol, etc. It’s unusual when they give credit to your vegan diet like he did. He thinks my heart may have a somewhat lower than normal output of blood flow. It most likely has been that way since birth. After the test, he can finally answer my neurologist’s question about whether my heart is contributing to my debilitating fatigue. His guess at this point is that it does. He wants to fine tune one medication to help with my tachycardia, keep an eye on my low blood pressure and do annual echocardiograms to keep checking for Carcinoid Heart. ( Which I do not have at this time) This is great news. This was the first cardiologist who seemed to be on the ball. I felt relaxed and confident that FINALLY, I had a great cardiologist.
Then he gave me a perspective I really needed to hear and keep in mind.
When we made the appointment, his clinic flagged my NET Carcinoid/Carcinoid Syndrome to check if any of them had experience with it.
He said, “Our clinic In the Dallas/Fort Worth Metroplex, has about seventy five cardiologists. Not one of them has ever seen anyone with Carcinoids, except me. I need you to understand that my experience is with ONE patient for a very short time. My practice consists of Intervention Cardiology, meaning heart holes, procedures, bypasses, resections, valve replacements, murmurs, etc. That is how rare your illness is. It is also how rare finding DOCTOR’s who have seen, much less treated a patient with Carcinoids is. If you have complications, I am going to have to find another cardiologist and I don’t even know where to begin. I am always going to tell you what I don’t know. If it comes to needing an expert, I will do whatever is necessary to get you to the right cardiologist and you will probably have to travel somewhere else in the United States.”
His statement caught me off guard. Intellectually I have always known how rare my disease and actual experts are. I grumble about the lack of real ones all of the time. Yet, because I am living in the fourth largest metropolitan population of the United States, I was still expecting there to be at least a few cardiologists who are experienced “enough”. It was the first time I was given a number that impacted me. Expert doctors are very rare. Having a doctor state that truth to me, may be the rarest of them all. He was genuine. I was stunned at my lack of understanding for my caregivers challenges when they see me. I was moved to empathy and compassion for what I expect is the frustration amongst doctors and other health caregivers like him who want to help but have limited knowledge of my disease.
Yep, we are still getting records transferred. The new oncologist, she left a message, asking me to hang in there while this is getting sorted out. I still have lumps in my left arm. I still need an oral surgeon. For today, it’s gonna be fine. This is life. Nobody gets a smooth course no matter what they are dealing with. I did notice my primary care doctor, neurologist, my new oncologist and this cardiologist all have hired nurses in their offices. That alone is huge. Nurses are the first line of patient advocacy and care. They ask questions that doctors don’t always think about. They notice changes in patients that doctors often don’t. Every doctor I have that has hired a nurse points out how much better it has been for both them and the patients. I couldn’t agree more. I had an unexpected gift come through my email. A song, composed and written by a woman with NET Carcinoids. It is a tribute to her nurse who helped her through the very frightening aspects. It’s easy to get cynical. My new doctor and she reminded me, most people are doing the best they can.
So , thank you to all the rare doctors and nurses who treat us. A very special thanks to the rarest of them all, those who state their limitations and stay the course with us until we get what we need.
Please check out this song. If you like it, please vote for it. I received nothing for this other than a great song and album I bought for my extensive “Songs That Move Me” playlist.
This song can be bought on Amazon and iTunes.