Does anyone know how high the pressure % can go in a person with PH? The doctor said the other day that mine were over 100 so I asked how high can they go and he sid he didn't know but said mine were way too high and he's sending me to a PH speciaist.
I'm so upset by this I'm in tears. You've had a right heart cath and those were the pressures they measured? Did the doc put you on any treatment? My pulmonologist immediately put me on O2 therapy and sildenifil BEFORE I even had one. Those two therapies are cheap enough for insurance companies to okay without problem as his office explained to me. After i had my RHC, the cardiologist put me on opsumit. Those types of docs have the ability to get you started on a PH therapy without seeing a PH specialist! When i finally did get to my PH specialist, she only tweaked what they had already done and changed my sildenifil to adcirca, she said it gives you more bang for your buck. The ONLY place you're going is to see your family!!! I was considered a class 4 patient and now I'm between class 1 and 2 depending on the physical activity i engage in and the weather (literally the weather can change the game). You have lots of time left! Your docs just need to hop to it!
For weight loss, I've had incredible success with Weight Watchers. I gained 100lbs during the 2yrs before my diagnosis because life was impossible. I've been following their program since May 2017 and lost 60lbs so far.
Weight loss is very hard because it is impossible to do anything not only do you get out of breath easy also fatigue is a constant. Stay positive it will get better.
mine has been up to 9000 thats when I stay in the hospital for weeks
I've been thinking about for you days now. I don't have an answer. I've noticed that my doctors started taking a real interest in my case when I came at them with educated questions. You're already doing that by asking questions such as this. Another thing I did was ask for alternative methods of communication with my doctor's and their offices. I send my PH specialist links and questions via email all the time. I send her updates and progress reports with readings from my oximeter, updates on our visits, I keep her in the loop with regard to other meds prescribed for me. My mom always told me that the squeaky wheel gets the oil. I squeak as loud as possible. Only you can convey how you feel, what your body feels like, your fears, your disappointments in your care. At one time I was afraid to stand up for myself in this manner because doctors are supposed to know better, but all they know is what they are told. They have a base understanding of how the human body works and they have case studies that relay data on what happens when things go wrong, but they aren't LIVING IT, you are! If you have an underlying condition that is causing your PH, maybe a good place to start would be researching drug interactions. Call your PH Specialist and ask what type of meds are prescribed for PH patients. Our biggest no-no is nitrates, esp if you take Opsumit. Since you already have a cardiologist you deal with, ask why he hasn't prescribed Sildenafil or Adcirca. Those are basic PH meds that could be helping your heart pressures NOW, while you wait for appointments. Heck, can you get a rescue inhaler?? Even that helps! I'd been struggling with this for almost 5yrs before being diagnosed. I swear it was all that weird asthma medication that helped me not die because it all helps you breathe. You may just have to fight to live and site the effects that stress has on PH patients so you can let them know that dealing with their crap is just worsening your condition by the neglect and stress their lack of care is causing. I'm not advocating confrontation, but sometimes you have to make people truly understand where you are with this.