As I wait for my call for transplant, it occurred to me that I will be entering a brand new world. I don’t ever want to forget where I came from. I fought to get to this point and in my “new” existence, I don’t ever want to give up either. By reminding myself of my struggles, it should help me fight…
So, here goes… Don’t ever forget…
- Waking up every morning assessing how my breathing and cough was
- Doing chest physical therapy every day 2-3 times daily – right after I wake up, sometimes during the day, and right before going to sleep
- All the nebulizers, mixing colistin, pulmozyme/tobi/cayston in the fridge, cleaning all the mouthpieces – ugh!
- The coughing that got so bad near the end that I couldn’t breath afterwards
- The enormous amount of mucus I coughed up
- The 24/7 oxygen – how fast the need climbed from 2L to 8L – the planning to ensure I had enough to go out with – making sure I had backup
- The breathlessness with every effort
- The inability to shower because standing in the shower made me breathless and I had to keep my oxygen on, so I had to resort to baths
- How the dependency to oxygen pretty much kept me confined to being home – it was just too much work getting out
- The twice a week pulmonary rehab with the older folks
- The constant concern from family members
- The limit on my son’s schedule – not being able to go see him on his track meets, take him places.
- The worry it all put on my son – he shouldn’t have to deal with a sick parent
- The constant hovering of my parents. I know it was all out of love, but it suffocated me at times.
- The stress on my husband – the only one actually watching the things I hide in public – the breathlessness, nasty coughing…
- Not being able to run.
- Sleeping with 6 pillows
- Not being able to lie flat on my back as it would trigger hemoptysis (bleeding from the lungs)
- Being transported in a wheel chair when going out
- Watching my pulmonary functions take a dive and not being able to anything about it
- Making the realization that I actually needed a double lung transplant
This is what I could come up with in about 15 minutes. I’m sure there are many more, but these are the highlights.
Looking forward to getting my newbies and finally being able to RUN !!!!!!!!!!!!!!!!!!!!!