Let me start by saying THANK YOU to everyone for your support. It is an immense help everyday when I hit an emotional bump. All of you are the best!!!
I went back to the doctor for a follow-up regarding my right heart cath results and to perform a six-minute walk test. You can read about the right heart cath and results here.
Unfortunately, the doctor is quite concerned with my pressure levels in my right heart. They have increased severely and she is trying to decide on what the next best step is and when to take it. Right now she is keeping me on the same meds but has increased my oxygen use to “at night while sleeping” and “throughout the day as needed when I am in the house”.
About mid-January I will have an ECHO and follow-up with her and I expect the following to happen:
- Portable oxygen to be assigned, but am hoping that it will be the smaller container so that I can fit it into a shoulder bag. (Think Louis Vuitton makes anything that would be appropriate?) 😉
- Letairis may or may not go away but I would be given Tyvaso®, a type of prostanoid medication that is inhalable (or breathed in) to help treat pulmonary arterial hypertension (PAH) (WHO Group 1).
I am getting better about using my oxygen, although I still try to avoid it when we have company. I know that I need to get over that insecurity, but I am working on it.
One of my friends really put it in perspective for me the other day. She came in to watch the Texans game and immediately asked me, “Where’s R2?”
It made me laugh and I showed her R2, which I had moved out of sight. Then, the whole Tailgate Team came over and saw how the machine worked, etc. I will have no problem using my oxygen in front of them and hope that I can continue in my self-confidence with it. I’m sure I can. It’s just that first step.
I am okay with my new normal, which will change again and again. Why? Because I have friends and family who love me for me and support me even when I don’t know it.
Thank you and I love all of you!