M
MichyB
Hi all. I haven't written much lately because I was in the midst of medical confustion. Just writing as an update. It's a little long, sorry.
For those of you who don't know me (I don't post too often) I started treating with a cardiologist last year because I was diagnosed with a possible bicuspid valve. I had several echos over the years from my internist ... one said I did have a bicuspid, one said I didn't and one said maybe. So, I decided that since I was into my 30's, getting married, and thinking about having kids one day, I should follow with a cardiologist. I got the name of a well respected cardio from someone in my office. I saw this doctor for the first time last year. They were laughing at me while I was on the treadmill, saying, "She can probably run circles around all our other patients." After my visit, the doc told me everything was fine and to come back in 12 months. I was told I no restrictions and could still take the birth control pill.
A few weeks ago I got my records and learned that my pulmonary artery pressure reading on last year's echo was 43. The doctor never told me. I went back to the same doctor soon after learning this because it was the fastest way to get another echo. (He was a real jerk about the fact that he didn't tell me but that's another story.) I was called two days later and told that my pulmonary pressure reading was 58, which is outrageously high, and classified as "severe" pulmonary hypertension. I was scared beyond belief.
I could not understand why this was happening. I was getting a little short of breath but at the same time I was exercising less and could not figure out whether it was due to getting out of shape, anxiety, my bicuspid, or a combination of all three.
After I got the reading of 58, I found an excellent pulmonary doctor who sent me for a chest Xray, angiogram and extremety dvt test. All normal. Finally, I realized (thanks to Nancy) that I should go to a PH specialist.
I went to Columbia Presbyterian's PH center a week ago. My pulmonary reading from their institution was a 21, well within normal and well below the reported 58. They really didn't comment on why the results were so different other than to say that every facilitity is different and calculates differently and that they see this (misdiagnosis) frequently ... They are sending me for a stress test as a precaution, and if anything looks weird, a stress echo. However, they indicated that they have every confidence in their readings.
After experiencing the care at Columbia, I can tell you the difference between a "good" echo and a less than good one. I have had 5 echos now. None of them prior to Columbia's was ever done for longer than 15 minutes. The techs typically sporadically place the instrument wherever they feel like looking at that moment, jumping around. There is no set procedure for how to do it. The doctors typically don't read the results until after you've left the building, so there is no opportunity to repeat images.
A good echo will take time. It will start all the way down at your lungs and basically use the wand like a roadmap up your chest around your heart, SLOWLY. I was on the table for a good 45 minutes to an hour. The doppler itself, perhaps because it's used on children, is tiny. The were able to stick it in between my ribs, without bruising me.
The tech did the test first. She then left the room and brought in a doctor to review the tape right there in front of me. The doctor had some additional questions so he redid some parts of the test. Not only did he confirm that the pulmonary artery readings were within normal limits, he finally found the answer to why I was getting divergent readings on whether I have a bicuspid. I apparently have three cusps but two of them are fused together, so it works like a bicuspid but looks like a tricuspid. (Does anyone on here have this?)
In one visit, I had all of my questions over the past four years answered. I left that place thinking, with confidence, that I was going to be okay.
I tell this story as precaution for those of you who are new or struggling with cardio's that you are not happy with. I initially went to a well respected doctor with a good reputation, however I think he was not accostumed to treating congenital defects or younger patients. His office gave me two bad echos and bad advice to boot, as I should never have continued with the pill if there was even a suspicion of PH. I had to seek out better and more reliable care. In the end, I spent three weeks panicking over something that is probably nothing. I may still need surgery one day for the fused tricuspid, but for now, I am still in the "waiting room."
PLEASE ... for those of you out there with congenital defects, make sure your doc treats those conditions and not just acquired coronary disease, and consider going to a pediatric cardiologist. The level of care is different.
For those of you who don't know me (I don't post too often) I started treating with a cardiologist last year because I was diagnosed with a possible bicuspid valve. I had several echos over the years from my internist ... one said I did have a bicuspid, one said I didn't and one said maybe. So, I decided that since I was into my 30's, getting married, and thinking about having kids one day, I should follow with a cardiologist. I got the name of a well respected cardio from someone in my office. I saw this doctor for the first time last year. They were laughing at me while I was on the treadmill, saying, "She can probably run circles around all our other patients." After my visit, the doc told me everything was fine and to come back in 12 months. I was told I no restrictions and could still take the birth control pill.
A few weeks ago I got my records and learned that my pulmonary artery pressure reading on last year's echo was 43. The doctor never told me. I went back to the same doctor soon after learning this because it was the fastest way to get another echo. (He was a real jerk about the fact that he didn't tell me but that's another story.) I was called two days later and told that my pulmonary pressure reading was 58, which is outrageously high, and classified as "severe" pulmonary hypertension. I was scared beyond belief.
I could not understand why this was happening. I was getting a little short of breath but at the same time I was exercising less and could not figure out whether it was due to getting out of shape, anxiety, my bicuspid, or a combination of all three.
After I got the reading of 58, I found an excellent pulmonary doctor who sent me for a chest Xray, angiogram and extremety dvt test. All normal. Finally, I realized (thanks to Nancy) that I should go to a PH specialist.
I went to Columbia Presbyterian's PH center a week ago. My pulmonary reading from their institution was a 21, well within normal and well below the reported 58. They really didn't comment on why the results were so different other than to say that every facilitity is different and calculates differently and that they see this (misdiagnosis) frequently ... They are sending me for a stress test as a precaution, and if anything looks weird, a stress echo. However, they indicated that they have every confidence in their readings.
After experiencing the care at Columbia, I can tell you the difference between a "good" echo and a less than good one. I have had 5 echos now. None of them prior to Columbia's was ever done for longer than 15 minutes. The techs typically sporadically place the instrument wherever they feel like looking at that moment, jumping around. There is no set procedure for how to do it. The doctors typically don't read the results until after you've left the building, so there is no opportunity to repeat images.
A good echo will take time. It will start all the way down at your lungs and basically use the wand like a roadmap up your chest around your heart, SLOWLY. I was on the table for a good 45 minutes to an hour. The doppler itself, perhaps because it's used on children, is tiny. The were able to stick it in between my ribs, without bruising me.
The tech did the test first. She then left the room and brought in a doctor to review the tape right there in front of me. The doctor had some additional questions so he redid some parts of the test. Not only did he confirm that the pulmonary artery readings were within normal limits, he finally found the answer to why I was getting divergent readings on whether I have a bicuspid. I apparently have three cusps but two of them are fused together, so it works like a bicuspid but looks like a tricuspid. (Does anyone on here have this?)
In one visit, I had all of my questions over the past four years answered. I left that place thinking, with confidence, that I was going to be okay.
I tell this story as precaution for those of you who are new or struggling with cardio's that you are not happy with. I initially went to a well respected doctor with a good reputation, however I think he was not accostumed to treating congenital defects or younger patients. His office gave me two bad echos and bad advice to boot, as I should never have continued with the pill if there was even a suspicion of PH. I had to seek out better and more reliable care. In the end, I spent three weeks panicking over something that is probably nothing. I may still need surgery one day for the fused tricuspid, but for now, I am still in the "waiting room."
PLEASE ... for those of you out there with congenital defects, make sure your doc treats those conditions and not just acquired coronary disease, and consider going to a pediatric cardiologist. The level of care is different.
