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
I thank you all for your answers! I just think it is weird to have a cardiologist tell you to go to the pulmonologist, and then the pulmonologist shrugs and doesn't know what it has to do with him since it is arteries in the lungs. Umm k. Maybe a coordinated treatment plan?
I am happy not to take medication if it isn't going to make a difference, but saying it is severe enough to "almost need oxygen just at rest", yet expecting me to walk all the way to the back of the buildings and walk from distance disabled parking doesn't make sense. The collective shrug is not helpful at all. And if I were my patient I would be making a treatment plan even if it meant be careful doing this and make sure to do this. There is no other pulmonologist and I have found with my other medical issues that researching and doing most things myself work better than waiting around for them to decide something is worth doing.
I get out of breath walking for any distance or standing for any length of time (that standing part may be from other issues), but between the two of them I just basically go do my thing and they are I guess for emergencies.
I have an implanted loop cardiac monitor, and when he put it in the tech set up my phone app for it, but I got no instructions about what to record symptoms or much of anything else. So I had several episodes and recorded them, but then it said it couldn't record any more after three weeks. I had to go in and they had to process it to get it to work again. So then the tech and cardio said it's only when you are passing out that you record it, and if you want to record every time you feel bad go ahead and wear out the battery. Seriously passive aggressive. Well, if I waited until I was almost unconscious I wouldn't be able to hold it to my chest for the 5 minutes it takes to connect and record. Oh well. I just don't record. What is the point? They look at it I guess. Sorry...just annoyed they gave no instruction or information and then put off when I was to come to get it checked. Then they act that way. Guess that was my little vent for the day. It isn't about quality of life, but more if you fall over, I see clearly. Thanks for letting me rant a little.
Your answers were very helpful and I thank you!