Chronic Rejection

        For some reason unknown to me, this topic has been on my mind lately. I certainly hope it is not a harbinger of the doom to come. I can honestly say I have endured chronic rejection with my first double lung transplant, and have NO desire to be tested in this way again. I decided to do a quick search on the topic, with respect to lungs, and found numerous medical updates on the net, literally filled with doom and gloom.
Clinical aspects aside, not one touched on what a patient actually feels at this time in their life.
        Chronic rejection in a lung transplant feels like a death sentence-mentally, physically and yes emotionally. Many times I described it just like that.. Before I actually knew the true meaning of those words. I can still vividly remember the day I was told. I was at work when the call came in. Thankfully, someone saw my expression and stood behind my chair. If not there would have been the sight of me & the chair gliding across the room.. I fell into my chair speechless, mind totally blank unable to process the words. What now? I knew I was short of breath, but this? The feeling is similar to being first diagnosed. That helpless feeling of not knowing what to do. Knowing in my subconscious what was about to happen in my future-or lack of.
          To be totally honest, I was woefully unprepared for the next few years of my life. Internet searches tell of the morbidity rate in chronic lung transplant rejection, so this was something else to add to my thoughts. At 40 years old, one rarely thinks of "final arrangements". This I had to do because it was the last thing I wanted my parents to worry about afterwards. They had watched me struggle and survive enough. I made plans for a month long visit to UPMC for treatment and a re-eval for possibly listing for another transplant.  To say the least, chronic rejection treatments back then left alot to be desired.  I remember having a death grip on the bed rails, screaming with pain in my knees, while the wonderful nurses ran for something to knock me out. And then just when we thought I'd crossed the hurdle- the serum sickness started... Oh what a joy... I'll leave that descruption to your imagination. Believe me, it was not pretty.  I finally left UPMC in a wheelchair, my legs too weak due to the knew pain. I was also denied a relist, due to kidney function.
           I geared up to find a center who would consider me for a relist along with all the other issues I was tackling. I found one. A wonderful center, and I still go there today. UF is MY comfort zone. Back to the story.  My knees were so weak, if I sat on the floor-forget getting up. I had to crawl to a chair and using my arms lift myself up into the chair, in order to eventually stand. I actually got stuck in the bath tub...alone.. until I figured a way to gt myself out. It's funny now, but believe me, not when you're freezing  and pruning at the same time.  I fell in the balcony to my apartment and couldn't get up. I waited until someone came home from work, sunburnt and almost out of oxygen before I could get help. Sweeping floors was an all day affair, for one room only. I had a bar stool and my broom. I'd sweep 2 tiles and sit to catch my breath. Move the chair, sweep...you get the picture. Literally an all day affair. I had lost so much weight trying to breathe, a light wind almost blew me over. Thank goodness Mom was there at the time to catch me.

        I would sit outside each morning watching the sunrise, drinking my cup of coffee and wonder how many of those beautiful scenes I'd enjoy. I told everyone that God was whispering through the palm trees, it wasn't the wind blowing. I reveled in all the scenes I could. This is what kept me going mentally.
        UF kept me going physically. I had an exercise program that would make an olympian jealous. Well, you get the idea. I went to rehab 3 days a week, had (still have) a multi station gym and treadmill at home. On weekends I would walk the mall. I knew exactly where each bench was to sit down and catch my breath. Every clinic vist, every three months my physical progress was checked. I had to be able to leg press 80% of my body weight. When I finished I was actually lifting 10 pounds more than my body weight.
Psychologically, I was told to stop doing my spirometry at home. Watching those numbers drop daily is so defeating. I already knew what was happening. This was showing me the undeniable proof. Thanks to the transplant team at UF I've learned that if I can exercise when I'm dying and on oxygen, I can do it when I'm not. 
        I remember many times wondering why I ever had the first transplant at all. Surely my original symptoms were nothing like this. But those thoughts have to be stopped. My original disease had not progressed that far, soI couldn't realistically say this. Plus, I had enjoyed 9 years of life that I would never have had. I competed in the 1994 US Transplant Games, hiked El Yunque in Puerto Rico, and so many other wonderful things I would have only imagined if I had not taken the chance on a lung transplant. I went back to work, attained goals and dreams all through lung transplantation. I remember saying after my first transplant that I'd never have a second. How wrong I was. I would not trade one part of my life to go back and change my mind.Good, bad, ugly, or otherwise.
         My biggest fear is that I will once again hear those life altering words: You have chronic rejection.
I know the outcome, but would rather spend my time not thinking about it and living my life.
To my friends facing chronic rejection:  I feel your pain, I remember the emotions. I'm here for you.
And I'm praying for you to desperately get the chance. I'm also promoting organ donation and research to help us all.

The Blessing of Mini-me's

       I had to replace the batteries in my spirometer this morning, and decided to stop for lunch  on the way home. While sitting at the table quietly eating my roast beef sandwich, I noticed a family sitting to my left.
Their daughter was this adorable little cherub with blonde ringlets for hair.  She was very involved with Mom, but dad and grandpa (I think) were totally immersed in eating. All at once this little cherub began to cry and grab her eyes, saying they hurt. My guess is she has an eye issue as Mom started searching for eye drops and trying to calm her down.
       This is when I began to become a little irate with the father. Instead of talking to his daughter and soothing her worries he continued to eat! And he was the one sitting next to her. Mom got the eye drops and ushered mini-me into the ladies room to put them in, while Dad watched her leave and proceeded to grab the little ones fries and eat them! What a louse! Actually I was thinking much worse but that's the nicest name I could think of for the moment. Mom & daughter returned and once again the little one was smiling and chatting away.  The only words I heard dad say were " you better eat your food". No smile. No show of affection at all for this little adorable creature.
       This has become the basis of today's blog.
Do people truly realize what an unbelieveable blessing it is to have this miniature carbon copy of themselves?
Or is it just people like me, who never had that chance?
Do people realize what they've been given?
       I was told when I was 17 that I could never have children. Not only would it be fatal for me, there was a 90% chance of the child being brain dead due to my lack of oxygen. Basically this has been a no brainer for me all my life, but that does not negate the emotional nor the mental impact of watching a carbon copy of yourself grow and succeed. Or for me the lack of.
      I had a tubaligation at 18. The next part you'll read I have never discussed since the fatal day it happened.Twelve years later, while on the transplant list waiting for my first life saving/altering lung transplant we discovered that tubal failed.  I was 5 weeks pregnant. I was on oxygen. I was living on 45% room air. I knew what had to be done, and I signed the papers, went into the hospital and it was done. Many may think me cold in this regard, but when you've lived most of  your life being told this is how it is, that is just what you do. Another tubal was performed, but this time I sternly told the doctor: "You make sure this does not happen again, I will not endure this again physically but most of all emotionally and mentally!" One time was enough for me. Also while this was happening, another choice had to be made. Whether to have a wedding or a honeymoon. The wedding happened on a Saturday evening and on Monday morning I was admitted into the hospital. So, there was one day for a honeymoon.
        Does my decision haunt me? Yes, sometimes it does. During heated arguments it was always thrown in my face that I never talked about it, just did it. Honestly there was nothing to talk about. If I did, it would have made it more difficult to do what had to be done. I could never be so selfish as to risk a childs life like that. In my opinion there are way too many out there no one wants, who I could love just as much if not more than a biological child. My doctor placed us on a list for a newborn adoption. Well, the day he called to tell me the good news that he had a pregnant mom who wanted to give us her baby, I had to tell him that I had been single for a week.. Once again... no child for me.
      I was in my early thirties when it hit me, "Wow a parent is responsible for molding a childs personality, attitude, and goals." This hit me like an epiphany. I realized the impact a parent has. If it took me this long to realize it, how many others much younger wished it hit them sooner? I fully realize it's tough for parents in todays world. You have to be ever vigilant. But, I also know when both parents work together, nothing is impossible. I see it everyday with my nieces and the time both parents take with the kids. They should be honored for all both of them do. I am so proud they are MY family! I see well-mannered and well- adjusted kids. Yeah they're sometimes a hand full-but look at the gene pool they came from!  LOL
    So my words for today..... Hugs those Mini-me's until they cry for air! Tell them constantly you love them..and be ever vigilant in keeping them straight.  There are those of us out there who wish we were in your shoes for a day!

Whew!

I decided I have so many things going on in my little brain I need to download a few.
Mothers Day:
     Well, it turned out pretty good.  Since I have no children of the human variety, my 3 wonderful, furry, four-legged boys planned to make my day special. They each had taken on chores that normally I would be doing...

DB (DragonBeast-Ding Bat) decided he would do the dishes all day... Coming from a dog that tries to hide under the cushions to escape a bath, this was a big decision for him.

CC (Captain Chaos) had the  chore of making the bed. Considering the fact he Is a Toy Fox Terrier, this was a major undertaking.

While Oz, dear "fruitcake" Oz, well his chore was to keep the floors swept. Since he is the one dragging all manner of items in from outside I guess this chore ws only fitting.  However, Oz has a terrible scratch-turned-cut-turned gash on his right paw so he was excused from duty. Much to the chagrin of the other two I might add.

The day turned out nice so we went for  motorcycle ride along the gulf coast.  Decided to stop at Pop's Sunset Grill and have lunch sitting on the Intercoastal waterway. The beaches and Gulf were packed. Mooch (our resident dolphin) stood no chance of playing today, too many boats.  After a quick lunch of scallops, shrimp & Grouper (did I mention I love seafood) we rode along Casey Key.

I spent the late afternoon taking photos of a few pieces I'd recently created so I could do my usual -edit, crop, yada,yada before they hit the net.  I was having no luck whatsoever inside so decided to take my endeavors outside for a more natural light. It was at this point I was completely engrossed in taking a good photo when I heard the alarm sound! Oz is the resident alarm. If you ever hear him bark you'll know what I mean. I looked down, which I normally don't do, and sitting poised to strike at my right foot was a snake! not a black one (they're friendly and keep rats away) but a brownish color one. I gasped, CC (the resident protector) grabbed the snake in his mouth and started to shake it. I screamed! Now my concern is for my boy, what if this snake is poisonous and bites him. My boys would chase down an alligator thinking what fun to chase such a big lizard! CC drops the snake at my scream, which proceeds to slither under a plant pot.

We all go running in the house. The snake still has not been found. He either got scared to death (just like us) or went to visit the neighbor.

Well, Monday Oz went to the vet and now has a large bandage on his leg. Poor fella, it's driving him bonkers. He has antibiotics he takes twice a day, DB has heart meds & Lasix he takes daily. Pretty soon I'll need to have a pill minder for my boys just like the ones I have for me.

Cinco de Mayo-God Bless Susie

Yes I know I'm a day late. I have a great excuse believe me. I was celebrating the wonders of organ donation and how one person can change a life.
It was on May 3, 2005, that my Donor Dad, Ron Paxton had to make the most heart-wrenching decision of his life. He chose to remove his lovely and only daughter Susie from life support and donate her organs.
     May 3rd was also her birthday.....
I received one of Susie's kidneys on May 5th. 05-05-05 to be exact. While I celebrate  one of the best days of my life, my Donor Dad is quietly grieving over the loss of his loving daughter. Through letters and phone calls, we have discovered Susie & me had many parallels in our lives.
       We were six months apart in age.
        We both had serious heart problems as infants-Susies' was found early -mine was not. Regrettably during surgery the heart lung machine malfunctioned and she remained "Daddy's Little Girl" her entire life.
       Susie's Mother had lung issues that would have required a lung transplant had she chosen to.-I've had 2 lung transplants.
        Susie was an athlete and ran in the Special Olympics- I competed in Track & Field at the U.S. Transplant Games.

It is said, When God closes a door -He opens a window. 
        Donor Dad lost his little girl May 3rd
        I lost my Daddy on June 3rd and his birthday would have been July 3rd
I still miss my daddy every second of the day, but through the miracle of organ transplantation I am Blessed with one great Donor Dad.

Susie will forever be honored with the pendant I designed above. The "sisters" cameo is designed in the pocketbook style of wrapping, and the Swarovski crystals are in our birthstones. The left side is one emerald for Susie, while the right  side holds one rose as well as one emerald crystal signifying what she gave to me.

I worry over my Donor Dad each year on the 3rd of May and say a few extra prayers for him and Susie.
I celebrate her life and the life the two of them gave me on the 5th of May.

Happy Cinco de Mayo everyone!!