Struggles

 Everyone has obstacles in their life. For some, it's a  flat tire and late for work. For transplant recipients, it seems as though we are in a constant struggle to get healthy. We feel great. We get sick and have to start back at the beginning . Continually..

Immediately post transplant we want to go out and conquer the world. As years pass, our medicines take a toll and aging of our new organ creates some nasty side effects.

I'm at that cross roads. We're trying a new direction in treating my antibiotic resistant Pseudomonas.  I've stopped all nebulizer treatments.  Amikacin made it so I could barely get out of bed or make it through the day. Collistin tightened my airways so I could barely breathe.  I struggled with the known side effects of inhaled Tobramycin and lost. 

I now see a local Infectious Disease Specialist and Pulmonary physician. I was told the Tobramycin could cause hearing loss, what I was not told the loss is permanent.  Since it affects the inner ear, loss of balance is a huge problem. I was starting to notice that issue, as well as painful tinnitis.

Yesterdays walk was a little slower pace. Today was at a snails pace. Granted we had high humidity too. My low grade temperature is back which means it's time for IV antibiotics again. We're treating with antibiotics - only- right now.

Instead of letting all this get me down, I will keep trying that walk. Remember... accomplish one thing each day. If that's all you do, you accomplished that !  I Downed a few Tylenol and drank a little Root Beer to settle my stomach. Took a short nap and now feel ready to face the afternoon. 

This wee squirrel was my motivation on my walk.  He ran down the sidewalk right up to me before realizing I was real.  Looked twice and scampered off.  He gave me my morning laugh.

Find joy in each day.

Don't let negativity to rule you.

Take that walk. (Accomplish)

Lost In Life

 Wow! Has it been almost two years since my last post ?

I blink and life speeds by at the sound of light ! We can all attest that 2020 was pretty much a blur with a pandemic (darn Covid) and the ensuing panic. For Lung Transplant patients this has been more like another day at the office. We wear masks when in public,social distance and generally take it carefully 24/7.

I had four hospital admissions and five rounds of at home IV antibiotics from April through December. The Pseudomonas in my right lung was rearing its ugly head again, plus pneumonia taking up residence didn't help much either. The side effects of no appetite, no energy and the GI issues made life .... well to say the least.. it was interesting. 

Out of all that, I think the most unappealing was the way mask wearing was made political.  Wearing a mask is NOT political. We do it all our lives. Cancer patients undergoing chemotherapy do as well. So to hear others call me a sheep or tell me I'm wearing a face diaper is the height of ignorance. Remember the old saying. Never speak harshly of another unless you have walked a mile in his shoes. Well, it clearly applies here.

I digress. This blog post is about my push to regain the bit of health I can control. It has taken me three months to get back to where I was pre hospital admits.  My oxygen sats were dropping into the upper 80s. And my spiro was disappointing at best. I had almost convinced myself it truly was my time and I wasn't going to beat this again. 

I made an apppointment with my local Pulmonologist as Telehealth visits weren't working for me at this point. I was losing a pound every two days, getting weaker and the struggle to breathe, I hadn't experienced in decades. I. Was. Worried. My entire visit I wore a pulse Ox on my finger. She noticed right away that once I coughed and cleared my airways, my O2 sats skyrocketed to 97 ! I have been saying this for years. Clear my airways and esophagus and I can take control. A six minute walk was done. At two minutes my sats dropped to 86%. I put on oxygen and once again they went up.

I now have oxygen to sleep with at night. I breathe very shallowly when asleep,. Plus, I have a portable concentrator for outings just in case. The better I feel the less I need. So far, just sleeping with oxygen at night gives me the boost I need to make it through the day without additional oxygen.

So... now to the part that is up to me. And there is alwys a part that we must take in our health. The doctors and nurses can only take us so far.  I was walking around at a wishful 0.5 miles an hour for maybe  five minutes before I had to sit down. I didn't let it get me down. I did something, if only for five minutes. I kept telling myself, soon it will be more. My morning walks are now at 2.5-3 miles an hour continuous for 20-30 minutes plus I stay busy during the day, laundry, grilling and such. Even trmming shrubs ! 

Today, well my mind tried talking me out of that walk. Maybe take a short one it said. No I replied, I'll beat myself up all day if I do. But, you don't feel up to it my mind shot back. This played out in my head until I hit the  halfway point in my walk. At which point I told my mind to shut up,yes my sides ached from breathing, but I was doing this. 

My point is... It's mind over matter, but it doesn't always have to be. Even if you don't feel like that walk or whatever your facing, take that first step and try. Now, my day is brighter because I accomplished that one task my mind tried to defeat me on.

Have a wonderful day and enjoy the good things it has to offer.