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  😎😎

Finally News I can Smile About !

As I mentioned in a previous blog post, I've been bleeding internally since 2013, in 2014 we found it was from my right lung. Yeah the bad one from my 1st transplant 24 years ago..
I guess after all this time, it has a right to protest the captivity :)

While my transplant team also sent me home in 2014 with the statement, there's really nothing more we can do, and I accepted it to a degree, I also decided this was my fight.  That being said after 3 long years of becoming thoroughly exhausted from that long 3.5 hour one way drive to Shands and waking at 2AM to do the drive......  My PFTs  have risen !!!  My lung function is better, not where I'd love it to be,but better. We lungers will happily take any good news we can get..I watched as  my lung function has steadily declined over the past years but three months ago it stabilized...   Insert brief hope here :)

This visit they are up a bit ! I'm feeling better, not where I would like to be , but enough to get housework, yard work, etc done at my own pace without massive fatigue and continual naps.
Ozzi may not be happy with me skipping an afternoon nap here and there, but I will certainly  make it up to him somehow.

I have stopped all nebulizers. The excruciating ear pain causing the worst case scenario of vertigo imaginable brought on that decision.  It will also save me close to $400 a month. I know I will go back on it sometime soon,, just not now. I also recognize that the summer months June, July & August are my "magical" months.. You know, the ones where I end up in the hospital and have to claw my way out. I am preparing for those months, and this year am determined they will be my friend- no hospital.After all, what is 3 measley months out of 12 anyway?

We transplant patients don't "bounce back" like healthy folks, mine took 3 years..

All my other issues are still with me, but this I had to shout. I have worked hard for this glimmer and I intend to celebrate !

Oh, and the best yet ! Kidney and Lung Transplant told me, they didn't know what I was doing- just KEEP DOING IT ...


Be someone's Miracle- Become and Organ and Tissue Donor

And The Fun Continues

     The last month or so has brought about changes and new /old decisions.
I am now also seeing a local Pulmonologist, in case of emergency. This was my suggestion so a physician here will know of my status should I need to go to a local hospital. Which would be absolutely one foot in the grave for this to happen. I have a dreaded fear of my local hospitals, that they seem to reinforce at every turn. If you are an organ transplant recipient, you will agree that your transplant center is leagues ahead of local hospitals ~hands down.

     If I am not blogging much this is for two reasons. When I do not feel well, I honestly haven't much to say. I become a serious introvert, quiet, and conserving my energy for getting well. Plus, who wants to always hear me whine about aches, pains, "I'm getting worse !" on Social Media. To me it's a downer and at this stage of my life something I need to avoid. I understand the occasional, but it is the constant and somewhat depressing outcry that can bring us all down, and not who I promised myself I'd become. I want my friends/ family to laugh, smile and keep me encouraged. I do feel for those who aren't feeling well or facing life altering changes, and I feel very deeply for them. This is just my viewpoint on me. Secondly, I rarely make it to my computer to do much of anything when I feel bad. Since my days already consist of multiple naps, when feeling bad there is usually more napping involved ~ and let's be honest. Would you turn down a great nap, in a cool dark room, covered in soft blankets- for typing on Social Media?

      But I digress. Over the last month, I have found I no longer qualify for a Handicapped parking permit. That was a Prednisone  moment for a few days. Me? who can barely breathe on a good day, no longer qualifies. Sure... that's our wonderful State Legislature and my Senator in particular Nancy Detert hard at work for us.  I spoke with her office about changing the laws back or giving a bit of slack to those of us who must park at the end of the lot and struggle to get to that Blessed air conditioning- and was referred to the Department of Motor Vehicles ! Imagine that, passing the buck when she had a hand in  making these rules tighter.  I consider myself a responsible Handicapped Permit person. On days when I feel good- I walk, there are others who need that spot more than I . However on those days when it is a struggle, yes I need a bit of assistance. Well, apparently not now.

     This last month has also seen a few changes in my health. I am back on my antibiotic Colistin until my Amikacin arrives. Plus who really wants to waste $400 of medicine?  Hopefully the Amikacin will "jolt" my lungs into fighting, well my left lung anyway. I'm not sure if I mentioned this or not, but I have my nebulizer next to my stationery bicycle. So, I must either sit on my bike or ride it , albeit slowly while I nebulize. Great way to psychologically make me exercise- right? I thought so too. I am however very winded when I finish, due to the ride and the Colistin trying to tighten my airways . Plus I am always fatigued and ready for nap #1. Hopefully the Amikacin will change this, update to follow.

     The main event in my month happened yesterday while talking with my Coordinator. She asked if I was opposed to going back on oxygen. That brought about a flood of memories and thoughts.  Opposed? No.. Do I want to ? No  Did I eventually know this would happen? Of course.  We discussed using oxygen while I sleep and exercise. Which is usually the norm in starting use. I used to sleep the sleep of the dead when I had it eons before. AND no massive headaches when I woke up. I breathe shallowly during sleep, I can create a headache. It sometimes goes away after a few hours and sometimes not. I also noticed during my last clinic visit, that walking from the waiting room to get my vitals done, my O2 sat level had dropped to 90 but slowly came back up to 95. We lungers have secret ways to get those sats back up ;)  So this might just help a bit in the long run. We're gonna wait and see if the Amikacin helps with the symptoms, yes the Colistin causes headaches as well and take it from there during my next visit in October.

     I have been hesitant about oxygen, as this is a new step for my husband too. He met me just after my 2nd lung transplant and hasn't really witnessed me being sick. Well the hemorrhaging last year was a huge wake up call for him. Plus, depending on the oxygen I get, it can be noisy. Not really conducive to romance either... We shall see..

     All changes in lifestyle, but nothing that cannot be overcome. I have always viewed using oxygen as giving my body what it vitally needs that I can no longer supply as needed, much like a person with a prosthetic. It  helps keep the rest of me oxygenated and healthy, while the lungs deteriorate. Merely being honest.. I am known for the bold truth.

Oh ! I almost forgot... I will be checking off an item on my Bucket List sometime soon ! I can't tell- after all this is Social Media and can't let "the cat out of the bag" just yet. More to come though !

Have a happy, joyous life no matter your health issues. You are here, and your family and friends are delighted !
   

Managing My Time

My agenda starts as soon as I wake up..
Most cannot fathom all that is involved with the regimen we follow as well as everyday life.

Add into that taking a Thyroid pill and waiting an hour before you can eat or drink anything besides water, getting my day started is jumbled. Depending on how I feel also denotes how fast I move.

I want to strengthen my lungs and increase my energy a bit more, so I usually walk my Treadmill after my nebulizer to get rid of the jittery shakes from the meds.. My body is good for very little while shaking so bad. Now the Plantar Fasciitis is rearing it's ugly head, my feet are extremely painful within a few hours of walking. Pair this with the fact that Ozzi now prefers a  car ride to walking, and Bette gets less exercise. He is 13 now and slowing down , regrettably. My hope has been to spend 15 minutes on the Treadmill after each meal. I can skip breakfast if I convince Ozzi to walk.

Now that hubby is retired, or partially fitting in time for a nebulizer is difficult.  I can't do it while he is sleeping, it is one noisy machine and he seems raring to go once he has breakfast. He is a man of lists and plans out what he wants to do the day before. After 11 years, I still have not gotten through that thick New England skull to chek on my list too :)  Or my routine.

Today we decided to try an experiment.

Only he was up earlier than I planned...

I had taken my pill and was chugging water when he woke up.  So instead of the treadmill, after breakfast we took Ozzi for a ride, and a walk in a different area.. Completely new dog ! He's apparently bored with the old routes..
I did notice it getting more difficult to breathe at the end of the walk, so couldn't wait for the nebulizer to open everything up and then the antibiotics.  Hubby had different plans..
We then went to the Produce stand and bought fresh vegetables.. I love the tomatoes this time of year so happily agreed..Knowing in the back of my mind the nebulizer awaited.
Then it was a stop at PetSuperMarket just because- Ozzi had been so good ! Then gas for the vehicle and finally home.. Yay- nebulizer time !

Hubby wanted lunch before he cleaned the cars...

With all this scrambling in my head, I made lunch. Wondering how on earth I will fit in that nebulizer, ride my stationery bike ( over the treadmill) and complete the ring and pendant order sitting at on my table screaming at me.

Solution!!!!!
I put a small table by the bike (recumbent) with the nebulizer. With my meds ready, water bottle in hand and a good book, I proceeded to hit my 15 minutes or 2 miles.
I'm thinking I may keep it this way... Two projects with one stone..

Here I have to mention,. it is imperative to have a good book to read..  I am reading Between Before And After  by Amanda Dick. I highly recommend it ! I actually kept riding  so I had an excuse to keep reading the chapter I was on !!  This is her second book I've read and both are well worth the time.. She is about to release her third and I cannot wait !!  She can easily be found on Amazon for you Kindle or Kindle App.

So now with jitters gone, and fully recharged...thank you Amanda for keeping me exercising, I leave you to begin designing those orders  :)

22 Years Ago Today

Looking back it's hard to believe it's been 22 years !

The time was 12:08 AM and I was called to the phone. I heard a familiar voice ask, "How would you like to go out of town?"  My reply was well I am actually, I'm going to St Augustine for a few days to regenerate.
"NO, I mean how would you like to come   north, to Pittsburgh?"
Oh my Goodness ! My world stopped turning, I looked at my Mom and mouthed "transplant".

I called the Air Ambulance and started repacking my clothes. The Air Ambulance company called to say a plane would arrive in 4 hours. This will not do ! I had a 4 hour window to before the lungs could no longer be used ! They were paid extra to have a plane waiting in Alabama, but they were sending one from Texas. He assured me the the pilots would be in the air soon. Having worked dispatch for a major carrier, I knew this was not true.. I quickly advised him:  1. The pilots have to get there . 2. They have to do a pre-flight check and get fuel. 3. Check the weather  4. It was a 3 hour flight from Texas to Florida  AND 5. Another 2 hour flight to Pittsburgh.

Thoroughly disappointed I called my Coordinator back and told him the news. He said not to worry, UPMC had a small jet that had just cleared customs and was in Tampa. It was coming to get me. !!!  YAY!!!!
When I called the Air Ambulance back, he was angry. "What is the tail number?"  You don't need that information. "When is it arriving?"  Sooner than you can !  All red flags to me at the time. Little did I know those red flags would soon show themselves for the mean spirited creatures they were.

We went to the FBO  (fixed base operator) area of the airport. This is where private planes arrive. As we were sitting there, 3 customs officials strolled in. Red Flag alert !  I whispered "They better not be after my plane !" My plane was taxiin up and they walked outside. They received an anonymous tip that this plane had never cleared customs !  I was right ! The Doctor onboard as well as the pilot tried many times to explain the importance of getting off the ground NOW ! No -go , these idiots were playing with my life !  They would not release the plane until all the medical equipment was broken down and inspected for contraband.. Let's be serious !!  The Dr. offered to let one of them fly to Pittsburgh with us, and then take it all apart,and they would fly him back home. I needed those machines to live during the flight.. "NOPE"

I'd had enough. I asked for a quarter. "I'm calling the local news. It's a matter of life and death and this time it happens to be mine !"  I called the local station, told a brief story of what customs was attempting. I also stated that if I did not make this lung transplant my death would be on their heads !  It was no more than 5 minutes later I heard a supervisor over the radio " Who the hell called the news!" The officials looked at me and I smiled prettily and help up the phone receiver :)  "Get that damned plane out of here !"

And that my friends is how my new life began...  I came out fighting and still fight !!

Morning is starting out great

I wanted to check my stores and email before getting ready for the Medieval Faire.
Well Comcast requested I change my port for my emails which caused ALL my messages to be sent to
Windows Mail. I like ONE email provider, not juggling 2.
Comcast assured me my messages would stay in Comcast.Not.
After sifting through them all I found one exciting email.
It was from a very nice Etsy artist telling me she had included my earrings in an Etsy Awareness Treasury!
I am psyched.
This is my first ever Treasury on Etsy, so my day went from frustrated to cloud Nine!

If you have a moment, please visit the Treasury and post a comment on the wonderful work all the artists have done. Awareness is for us all.

BTW...My design is the Sterling Silver Organ Donor Awareness Ribbon Earrings.

http://www.etsy.com/treasury_list.php?room_id=108005

You may need an Etsy account to post comments, it's free. If you prefer not to open one, viewing means alot too.

Thanks