I have been delaying. I keep hoping to have good news to share. That is not the case.
Just keep getting worse. I am now on oxygen 24-7. I go to work when I can get my oxygen high enough and my heart low enough. Getting to the car is my hardest challenge. Some mornings, I can’t get my oxygen over 80 until after lunch. I am unsure what is going on.
I did see the Pulmonologist the first week of January. The prognosis was not given, but understood. In the last 6 months I have lost 10% of my lung capacity. I am under 50%. The scar tissue around and in my lungs has gotten thicker. My heart now has pulmonary hypertension. All bad news. So, I finally agreed to meet with the transplant team to see if I qualify for a lung transplant. Found out that a couple of anxiety attacks during winter break were cardiac events (not sure what that means). In the mean time, I have an appointment with a dr who specializes in Pulmonary Hypertension.
Since Christmas, my health has become more fragile. Getting down the stairs in the morning is huge thing for me now. Cooking? Well, sometimes I am okay, somedays I am not.
Accommodations/Adjustments: Little tiny fridge in my bedroom with snacks in case I can’t make it down for a meal. Extra medications available for the same reason. A gallon of drinking water and some mini juices just in case my glass of tea doesn’t make it to the next trip downstairs. Switching to prepared meals. Found a great Gluten Free one from Mom’s Meals. I have had several. Very tasty and not bland like the senior citizen ones.
Why don’t I move downstairs? It is just a living room, half bath and a kitchen. There really isn’t room for me to move there.
Here is an example of my days:
Tuesday – went to work, seemed okay. Didn’t quite drink enough liquids.
Wednesday- Worked from home. Couldn’t get oxygen over 85 to get to car.
Thursday – went to work. Struggled breathing a little bit. But made it work
Friday – couldn’t get heart rate down so I stayed home
Saturday – rested, but had a hard time getting oxygen up again
Sunday – oxygen was up above 93, but then my heart was racing
So, here I am again, trying everyday to breathe and live.
I want to take a minute and thank those who have really helped me these last 6 weeks and watched me decine. Since I am trying to keep names out of the blogs… my friends at the food pantry, my sister, husband, bosses, administrator, pastor, long time church friends, and the nurses at my work. Thank you for taking the time to make adjustments to help me and care for me.
God has allowed me to walk this path for some reason. He knows what will become of me. I have cried to Him that I am scared. I have prayed for healing.
Somehow, as long as He allows me to see each day. I am doing good.