It’s not “well, shit”, so that is good news.
Yesterday I gave an update on my pulmonary hypertension and stated I was waiting for the doctor’s recommendation following my right-heart cath.
I finally received the doctor’s notes, which are summarized as follows:
- My pressure in my pulmonary arteries are up, which is bad
- Increasing desaturation, which means my oxygen saturation is not staying above 90-92, which is where most people go as their lowest number concerning oxygen saturation
- Other factors included, which “by all criteria [she] needs additional therapy, and we have little to offer”. That is because PH is not curable, not because she is giving up. Lots of other tricks up her sleeve depending on my body.
Options are as follows:
- New med, either tyvaso or ventavis. I’m currently on Letairis and Revatio. She doesn’t think Revatio needs to be continued as I am not benefiting from it.
- If my six-minute walk deteriorates to <450, I’d be considered for GRIPHON. (I don’t know what that is, but suspect it’s a Baylor program.)
I have my six-minute walk after Thanksgiving and am wondering if I need to “throw” it to get into GRIPHON, whatever that is???
Now, here is the fun part! Seriously! Remember that I mentioned I may get put on oxygen? Well, look at my new toy!!!
I am to use it “with effort”. This means that I don’t use oxygen all the time, but only when I’m performing activities that mess with my oxygen saturation, i.e., begin to leave me short of breath. For example, vacuuming or running up and down the garage stairs when unloading the groceries.
Next week they’ll give me a pulse oximeter to wear while I’m sleeping to see if I need oxygen while I sleep. Not worried about that right now.
Hubby is worried about me; but I already cried so I’m moving forward and wanting to make sure I use it correctly and be truthful with my daughter. Hubby asked what I was going to tell her and I said I would tell the truth, “I have a sick lung and the oxygen will help me”.
So, thus, this post is not titled, “well, shit”. It’s a new chapter; it’s nuts; but there is this adorable little girl who is my daughter with whom I must go watch “Gnomeo and Juliet”. Trust me, the movie is worse than receiving my “with effort oxygen”.
Love to all of you!