The last time I posted was back in October 2018 and now it’s August 2020! What happened is I got a double lung transplant. The sad news for us Pulmonary Fibrosis recipients is that there is no cure. You just get worst, you can not breathe, you weaken and hope to get listed for a lung or two transplant. I got lucky.
Why didn’t I update this site? Well I had to recover from my transplant surgery. That’s another story.
What can I tell you about living with Pulmonary Fibrosis? You find yourself tired all the time, short of breath and tethered to oxygen 24/7. You have to have an incredible support team ( caregiver, medical insurance, healthcare professionals ). Here’s some tips that in hindsight I wish I knew
1. Seek out physical therapy, you’ve got to keep your body strong so you can recover from a lung transplant surgery.
2. Seek out a psychologist . The burden of watching your body atrophy is horrible. You lose your driving privileges completely ( I still don’t not drive ). You will eventually need to be helped into the shower & bathed by a caregiver. You will become very anxious & depressed. You will need to vent your frustrations to a professional not to your family & caregiver. They are experiencing extreme sorrow & stress taking care of you and their life. This is HARD!
3. Find a hobby that you enjoy or learn a new skill. Recite a poem , read books, do crossword puzzles, do a craft ( me I knit ), woodcarving, cabinetry, whatever passions you.
4. Setup a daily & weekly schedule. Since you no longer work and probably are on some sort of disability insurance. You need a reason to get up everyday. Figure out who you can contact and email them every week. You need social contact during the week. Make sure you get out of bed everyday and get dressed. Wash yourself ( if you can ). You’ll feel like you have accomplished something. Make your breakfast & lunch everyday. That requires meal planning, so setup a time every week to meal plan. Walk everyday, put that on your daily schedule. When you do your walk, is it outside? Do you have enough oxygen canisters? You need to plan your outings with how much oxygen you have available. Lots of planning. Those portable oxygen only work up to 3 liters/minute. I was up to 20 liters/minute. So my daily walks were in the house , I didn’t have the strength to pull tanks towards the end.
So many things I learned that I want to share. Most of all keep positive. Join online support groups. Talk about what you are going through, you’ll find you are not alone. Help your family understand what you are going through in a positive way. They don’t know, they aren’t you.
That’s all for now.