Let's talk Steroid Induced Diabetes

 First off... This is just my opinion and how I changed it.

In 1999 and 2000, I was battling chronic rejection of my double lung transplant. Back then we got hit hard and fast with steroids and changed from Cyclosporine to Prograf to help control it.  All this caused me to be diagnosed with steroid induced diabetes.

I was put on insulin and began checking my blood sugar 4 times a day. My Primary Care at the time sent me to a three day Diabetes Management class that was extermely informative. First, we discovered that the insulin I was on wasn't what I should be using. I had serious side effects and it was recommended that I make a change to long acting insulin. Once changed, no more side effects. I learned to combine meals for effective control, drink tons of water, exercise even if minimally.

Through all of this, I had lost down to 90 lbs, on oxygen, in a wheelchair after 30 days hospitalized in Pittsburgh for Thymoglobulin. I was fighting to get out of that wheelchair and walk ! I had to walk to stay listed for a second lung transplant. I also had to lift 80% of my body weight with my legs. Once I was able to lift 100 pounds, there was no turning back for me. The Doctor said I could ease off.. Nope. not me. I had room to gain weight and it not afffect me  :)  This was a bit further down the road.

In all of this came the Diabetes. I felt this was one thing about my health that I could control. Yes, there were times I wanted to scream. Times I wondered if I could eat anything, without causing my blood sugar to rise. My blood sugar was so high at time of diagnosis that my vision was blurred. It had to be controlled quick. I was also so thin, there was no place the needle, no matter how small a gauge did not hurt. I was covered in bruises just from this alone.

As I started testing, I began to see a pattern. Certain foods affected me more than others. I'd already given up sweets. I never truly cared for them much anyway. I only wanted something sweet at rare times. 
I was walking very slow.. A turtle could outrun me with ease. After each meal, I began taking a short walk around my apartment building. I had to use a cane because my legs weren't strong enough yet, and my breathing was labored.  This one short walk, got my blood moving and my sugar dropping ! Eureka... could this be all there is to it? Bolstered, I began to push for more walking.

I had also given up potatoes, rice, noodles, anything fried and (my nemesis) bread. I became a control freak ! I thought if I can control this, it's my responsibility, that is one less prescription I have to take ! After a few days I felt better physically. After a month I said goodbye to the cane !  And after 10 years of being insulin free with good blood sugar readings, it isn't checked anymore when I go into the hospital. This was major elation for me !  I proved to the medical field that we as recipients do not have to accept that diabetes will happen, but if it should happen we are more than able to control it without medicines. 

Now, I can eat what I want, though I combine my meals. If I have this at breakfast, I don't have that at dinner. Life is a series of give and take. And. I. Walk. everyday, twice a day if possible. 

That three day Diabetes Management class was the best class I was ever sent to. I learned and now practice so much from it.

Control what you can, give the rest to your Team.. and remember.. Water...Water...Water.. drink it like a fountain !

Once again... This is my experience only. If it helps you, that's great. If not, don't shoot the messenger, please.

Photo from a bracelet I have, and the poem The Dash.

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.