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I have hertiable PAH and it is severe. When the echo estimated the pressure to be very high >65 mm Hg, my doctor in Iowa did tests to rule a blood clot, left heart diases and common lung diseases. She said all along though, I would have to go elsewhere for treatment. I thank God she sent me to Mayo. She (nor the hospital she practices out of) had experience with or access to the powerful drugs that I’m on. The hospital doesn’t even have IV treprostenil (Generic Remodulin) in the computer. (I found this out when my primary doctor tried to update my medications list in the computer.)
After the tests and talking with my home cardiologist, I did some research. It it I learned from the Pulmonary hypertension association that they accredited certain facilities. In my research I had two options: Mayo Clinic’s (Rochester) pulmonary hypertension center or the University of Iowa’s Pulmonary hypertension Center.
I choose Mayo, as the two were essentially the same distance. Yes, they redid some of the testing, but they saw me immediately and the very next day did a RHC and got me on treatment, asap. They had the ability to do testing, diagnosis and treatment very quickly.
Mayo helped with my understanding of my diagnosis, insurance approval for the very expensive medications and they monitor me closely by having a nurse call every week. In addition, I can call the on-call PAH center doctor at any time, day or night, if I’m feeling really bad. I’ve already done that once and I can message the doctor/nurse with the app for less pressing stuff like filling out the FMLA paperwork and or ordering a diuretic because my weight increases too much in one day. All of which any accredited Pulmonary Hyoertension center will do.
You see the echo was way low on my estimate. My RHC pressure was over 100 mm HG and I had multiple signs of right heart failure. They were worried I would have a heart attack before I could get treatment. So, time was of the essence and now I’m on triple therapy. I go for my one month checkup next week.
In addition, accediated centers, like Mayo, have access to clinic trials and they can let me know about any that might be a benefit to me. They also helped with the genetic counseling to determine the gene mutation causing my PAH, so now all relevant family members can be tested or screened with echocardiogram. Hopefully, everyone else in my family who manifests the disease will be identified well before it gets as severe as my case.
The Mayo Clinic takes the time to explain things and they are not in a rush! When I met with the drs the first visit they spent 1 to 1 1/2 hours with me going over my medical history and actually examining me! When we returned after tests we’re complete, we spent 30 minutes with them. They are very thorough.
PatClippertonFox said:
Barbara,
I feel that the specialist at Mayo know more about PAH then the regular Physician that are familiar with the disease.
================Yes they probably do
know more but how much do they really have to know ??
They have a number of routine tests that all pulminologist and cardiologist do like the echogram and the EKg and the pulminary test and the walk etc. Anyone can order those tests and test for OX and then that is about it
2 or 3 medications maybe??
It would be nice to go to the Mayo if is commutable but otherwise there is the cost of the plane fare and the hotels They certainly know how to explain it better then most doctors that is for sure
Kerri2,
Your story is similar to mine. My right heart cath was very high and I too was heart failure when they took by ambulance to Mayo. I'm on the Remogline I couldn't take the generic of it. Do they have you on anything else??
They told me that PAH wasn't hereditary and you say they told you it is. I'll have to check that out when I go next month. Thanks for your story it was very informative to me.
Did they help you get your medications paid for thru a grant??
Stay in touch.
Pat C Fox
I got lucky, after my primary dr. saw my EKG, chest ex-ray, and echocardiogram, she called a dr. she knew in Milwaukee and he saw me the next day and did a lot of blood work and a right heart catherization and diagnosed me the same day. He is at St. Lukes Hospital Cardio- Pulmanary clinic. The next week I went back to a Pulmanary dr. I had seen before, but he initially told me nothing was wrong and said to come back if I had more trouble with my SOB. When he got my test results from the cardiologist, suddenly he was interested. He did a sleep study and found out I had sleep apnea, but my lungs didn't show signs of any problem. I have been complaining for several years about being tired all the time and SOB, but it was treated as just getting older. I only went to the dr. this year, because I couldn't cut my lawn anymore, because of SOB and chest pain. I will be 75 on Wednesday, but that weakness and chest pain sent me back to my dr. to complain once again. If I hadn't, I probably wouldn't be typing this post RIP!
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