Summer, Wedding, Rushing and Life

 As many know we've spent the last five summers in Maine. We camp at Shore Hills Campground in Booth Bay. A quaint little town with peaceful tourism and a wonderful atmosphere.  It took Larry years to convince me to go, now he has to convince me to leave. Granted the first snowfall or cold day and the lovely state will see my backside as I high tail it out of there.

You may scoff and say that being in a motor home isn't camping. BUT, for many who have to be careful of the elements and staying away from dirt, it's how we get to feel close to normal. You can have the hard dirt and sleeping bags, I'll take my way anyday !

Our days consist of walking Nelson along Barrrett's Park, where the rugged New England coastline is restorative to the soul.  Walking the campground, where Nelson loves seeing Mr. Neal. Mr. Neal rides around on his golfcart giving treats to all the dogs (think ice cream truck when you were a kid) or walking the harbor. The humidity is low, the weather and temperature are great for summer and I can walk and breathe ! I enjoy the scenic harbor walks and taking photos for my creations too !

   

Maine is also known for it's seafood. We absolutely gorge on it while there. We go local and support our local lobstermen as often as possible, Or visit Trevett's Country Store for our favorite Haddock basket. They sure know how to feed ya up theah.

     

We left early this year my Sweet Girl Gracie married the man of her dreams October 2nd in Knoxville. I wasn't able to attend, Covid and all that jazz but she knows how much I love her and wish I could. Grandpa Larry was beaming like a peacock the entire stay there. 

It was at this time that my Mom got sick. A mini stroke that she couldn't recover from. She stayed with my sister Fran and her husband Bill for two weeks and they showered her with all the love and TLC they had and some stored up I'm sure. You see, our Momma means the universe to us. She's a spry, fiesty 92 year old . I had to get back to Gainesville for an appointment with a colo-rectal surgeon which had been on the books for months. It was the earliest they had from May and it was to discuss possible surgery... Yep... Mycophenolate can cause us a few issues down the road. Not being able to visit Mom at the Rehab (Covid and all that again) we headed home after my appointment. All this weighing heavy on me. I knew in my heart, Mom understood if anyone would. Maybe my siblings didn't, but Mom did without me saying it. She and I had a closeness that few would understand.

October 23rd came and I celebrated 30 years with my first lung transplant. Imagine half my life thanks to an unselfish donor and family.  WOW ! The life I've had, enjoyed, the obstacles, it's mind boggling. 

I chose to change to a new lung transplant center over the summer and my first appointment was October 22nd. A Chest CT showed possible lymphatic nodules in my left lung, so a bronch was scheduled for Nov 2nd. 

It was during this time, my mother declined even more. We had intentions of rushing to her after my bronch, but she went to be with my Daddy the night before. I didn't have the best feelings mentally going into my bronch I admit. They raised me and reinforced that I had to be strong and stay positive, so I went to the hospital. Larry and Nelson waited outside for me.  When I woke up it turned into an admission.

And here I sit..... Day 12? 13? still receiving antibiotics for a variety of infections in my right lung. I missed my Momn's funeral (another story). I know she, daddy and God are watching down guiding me and Larry through this.  Plus there is Dr. Griess who has restored my Faith in the medical establishment.  My right lung may be removed at a later date. Something I begged for, for 10 or more years.

Oh ! and tomorrow.. Well, tomorrow I celebrate 19 years with my second lung transplant !  What a day it will be ! 

Remember .... Life is all about Balance. Don't allow the negative to consume you. Obstacles are a part of life as much as the joys.

The Saga of The Scented Roll.

 We well remember the toilet paper shortage of 2020 right ?  Out of habit, I still check that aisle when grocery shopping. 

This trip, I find it's on sale ! No matter how much you have at home,  you never turn down a sale on toilet paper. Being so busy comparing ply and sheets per roll, I neglected to see those big words, dead center on the front.

Lilac. Scented. Tube. With. Vanilla.

While restocking, I ripped open the top and was assaulted by the strong cloying scent. I grabbed the plastic cover and to my dismay finally read the front. Oh well, if it's just the tube, that should dissipate quickly right ? Let me tell you.... that bathroom scented the entire house for days!

One afternoon while chatting with Mother Nature in the facilities I started a sneeze fest. I realized it was the scent. The sneezing turned into coughing which caused my sinuses to break free and run faster than Forrest Gump.  

Unable to get to kleenex fast enough, I grabbed the closest tissue. OH NO, not the Lilac tp!

Yep... the cloying scented Lilac tp. 

I now had a nose full of that smell.  Since certain scents literally take my breath away, I threw the paper down. I flushed my face with water trying to rid myself of the smell, gasping for breath.  It was all over me. 

So much for only being the tube.

I bet quilted Northern didn't think a consumer would have this type of reaction.

Lesson learned.

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.

Changing Outlook

     Today, driving home from yet another doctors appointment, I thought about my outlook on my life.  Many of you know, I choose to not always "update" or post about what my daily life is about on Social Media.   This is a conscious choice.
In the last 5 years, I've been more instrospective and not having anything to say on certain topics.  I realized that hearing my lung transplant team tell me there was nothing more they could do for me (5 years now), hit me mentally harder than I thought. Yes, I'm determined to prove them wrong, but it does take a toll on one hearing that kind of news.  A person never gets used to it.

     Why post about my daily struggles ? Because no one really needs any more to bring them down. Many choose to allow too much negativity in their daily lives already.
I see no need to be Social about my pain, and anything else that goes along with my many surgeries.
I would rather bear this Cross I've been handed with dignity, and allow you my friends to lift me emotionally throughout the day. That is what friends do, right ?

Plus my Momma always said, if you have nothing nice to say...... in the days of social media- keep scrolling. 

     I find that instead of letting my life get me down, I try to find joy in the simple things- EVERY day.
While I was waiting for my 2nd lung transplant & on oxygen (again), my day started with sitting outside on the step, with a cup of coffee welcoming the sunrise. I could have hit FaceBook with "I didn't sleep again !" or "I'm so tired and exhausted "  instead I find that positive ray of sunshine to brighten my day.

When Nelson drops his tennis ball while I'm eating, I get up and play a few minutes of fetch. My food can wait. Time with Nelson cannot. He's happy, it warms my heart and makes me smile.

My morning is best spent sitting in a lounger outside watching him wait for squirrely or chase lizards.  The simple things can bring so much positive into our lives.

 A simple touch from Larry, or one of his practical jokes warms my heart. It means more than any store bought item he could ever give me. It reinforces our life together, & gives me that much needed boost to keep fighting.

Laughter and smiles- that's the key. So let's stop the name calling, finger pointing, and hatred- life can be negative enough, right?

Closing for the day- Nelson is unhappily on the couch alone & needs loving..

Finally Free !

I am finally back to a normal heart rhythm ! It only took 2 CardioVersions and 2 hospital stays, but hey whatever works right?

The last 6 months have been the worst, to say the least.
September was the start of the A-Fib and multiple testing for a Watchman, only to be told I was a perfect candidate, but the Board chose not to give me one. I was referred to Mt. Sinai in New York, but the Electrophysiologist office neglected to send the records.  I discovered this in January. Unbelievably I am still waiting to hear from them. I chose to contact Shands Cardiovascular since they are only 4 hours away in Gainesville, FL. They visited me while I was hospitalized in February and did another TEE as well as a CardioVersion. I had a wonderfully normal heart rate for all of one night. The pharmacy didn't send up the meds to help it stay that way, and you guessed it I coughed the next morning... Back in A-Fib.

Another admission was scheduled for March. I was put on Sotalol for 5 doses with an EKG 2 hours after each one. Yes even at 2AM  ... grrr.. This was to make certain there were no prolonged QT waves in my heart, which could eventually be fatal. I then got another Cardioversion and have been normal (well for me) ever since.

In all this time, I lost My Boy Ozzi. Two days before my birthday. My 26 year lung transplant anniversary breezed by in a cloud along with my birthday. I'm still not ready to write about how much I miss my fella. He was my heart, my soul, and my inspiration to keep going. We were a team.
As the days went by, I recognized the need for a reason to wake up every day. Larry was away working and this house was too empty.

A friend knew I was looking - slowly- for a furry, wet nosed companion and recommended us to someone she knew. Nelson flew (literally) into our lives. I will admit 16 years out of the puppy stage, and this fella has been a joy to behold. He is into everything, explores the world via his nose and mouth ! The first commands he learned were "drop it" & "leave it".

He isn't Ozzi. Nothing will ever take his place in my heart. Nelson is pushing hard though. He's loving, tenacious, and stubborn all at the same time.

He's earned the nicknames wiggle butt, waddle butt, & low rider. He is a Skye Terrier and I honestly never thought to own another. They are difficult to come by. Owning a Skye Terrier was on my Bucket List, though I did have an Oath with Ozzi, & he promised me he'd live forever.

Now, to the latest dilemma, health wise. All these shocks to my heart plus a dermatologist visit triggered a case of Shingles. Oh yay !  Well, it also triggered what is known as Grovers Disease. Never heard of it ? You don't want to. It makes Shingles feel like a picnic in the park. Little bumps all over your torso front & back that will drive you mad with itching. I tried 2 Benadryl, Hydrocortisone cream, SSD cream & finally resorted to soaking it all with alcohol and then applying baby powder.
The Dermatologist called in a big tub of cream to help out with it all. She did offer something to help me sleep. I declined.. after all what's better than getting up every 20-30 minutes wanting to rip your skin off by scratching? It seems to be helping, but from what I read this could last up to 12 months. Seriously ?!?  It's caused by Stress, Sweat, Sun & Heat.. Great for us Southerners. 

Honestly, if this lasts 12 months- the stress of wanting it gone will guarantee it stays for another 12.

At least I no longer feel intense pain when a soft T-shirt rubs my stomach.. 

Have a great day !! Oh ! and don't stress too much- we might end up Grovers buddies  😎😎