My PH was found on echo. I have h Ehrles-Danlos, lymphedema, sleep apnea, hypothyroidism, and some other EDS co-morbidities. I am confused, though. I had a cath, ct, I have an implantable loop cardiac monitor to catch any issues there, some dysautonomia issues, but other than the echo finding PH everything else was fine.
My cardio sent me to the pulmonologist to see if he would give meds since I can't… read more
RuthMak. I have added you to my team. My PH was found by a right heart cath. My 02 was down to 90 and she said I needed to see my pulmonary Dr. He did a CT of the lungs and found Interstital lung disease with honeycombing. My cardiologist put me on a blood pressure med for my lungs and my pulmo put me on oxygen 24/7 and 3 inhalers. My lungs are so bad that meds will not help them. If yourl ph is not bad like mine your pulmo should pput you on meds to keep the ph from going higher. If you are not happy with your pulmo, you need to change Dr's. It really takes both of those DR's to treat you. Your cardio should do RHC and your pulmo should do the oxygen and meds. Good luck and be proactive in your healthcare.
Ruth mark. Change both Dr's bcuz neither one of them seem to want to treat you. Being a retired RN, I will tell you not all pulmonologist know a lot about PH. You might have to research pulmonologist in your area that deal with PH. It's worth your time to get the best Dr who will put you on at least inhalers and give you a 6 minute walking test to see if you need oxygen.
Praying for you to get good Dr's and feel better soon.
I totally agree with the part about if you don't feel comfortable with either one of your doctors to get a different opinion how to find the doctor that is willing to work with your other doctor. I know this whole thing is so complicated and I feel for you having kids and business and a husband I know there's a way honestly I don't want to get 2 into it except for having faith and trust in God is probably a good way to start
RuthAnne. my lung doctor told me he would hold off medication until I was having some effects from the PAH. My cardio put me on Sildenafil which, after six months, I couldn't stand the headaches any longer. The lung doc said they weren't doing any good as there was nothing wrong with my lungs. This was said after many lung tests. So I went back to cardio and told him what the lung doc said. Now, I go back to the lung doc Monday. He did tell me in the last visit there was a drug I could take, but it would cost 30,000 dollars a year. I looked it up on the net and I couldn't believe the differences in costs at different pharmacies. A month's supply at Costco was about 40.00 while a month's supply at another was 450.00+. Anyway the manufacturer is making about 11,000 a month off the medicine and I'm not even sure how good it is. Not all pharmacies are allowed to dispense the drug. The name of the drug was Opsumit. Maybe someone on here can give you more info. Good luck, and get your doctors to talking with each other.
What P Smith said. My first pulmonologist didn't set up or tell me much then I moved to AZ and the pulmonologist I got has been treating PAH for many years. He works with my cardio and provides meds which have helped me. . I was truly amazed at my 2nd visit when pulmonologist told me Cardio would be doing a Rt. heart cath to determine exact pressures, so we could get a full treatment plan in place. I didn't know how to act having them communicate😁