"STOP the world I want off ! "

     Have you ever had one of those days where you want to throw your hands up and just scream.. Stop the world I want off.. Or for you Trekkies -Beam me up Scotty!

  I seem to be having a year of those days.. Now this is not the rants and raves of a silly LOL (little old lady), I too have those times when I feel overwhelmed with health issues and trepidation of what is to come.
My year started with the Retinal Occlusion and the news that my vision would never return to normal in my left eye. Then on to my little boy (DB) and his heart lung issues and fearing I was losing him a few weeks ago.
     For those of you reading my blog for the first time DB is one of my furry wet-nosed four legged boys. The alpha male of the household - yes all 10 pounds of him. And affectionately called Dibs since he is a smaller version of his 18 pound brother.
     Next was a clinic visit to Shands and the news that my lung function and kidney function were down. I knew I couldn't ride that "all healthy and good" gravy train forever, but both?? The clinic visited resulted in a return trip for a bronchoscopy and cleaning all that "gunk" out of my lungs. To date nothing has grown in the samples,  to my dismay. My cough left for a few weeks and just when I thought it safe to breathe again -Wham ! it returned with a vengeance.  I mean drinking a bottle of water really fast and hanging over the porcelain throne to bring it all up. Daily... You see all that "gunk" likes to stick around and try to take up residence in my lungs- resulting in a high temperature and Levacquin for 5 days. Which is where I stand now. One more day left !
I have yet to decided which taste is worse: Prednisone sticking to the roof of your mouth , requiring  that appendage with all those taste buds to jar it loose- or that metallic taste from Levacquin that NOTHING will remove. That plus the insomnia might put good ole Lev right on top.
    For the last 3 weeks I've had dizziness for no apparent reason. I mean if I'm gonna lie down and the room spin- why can't I have the alcohol to make it worthwhile right?? It doesn't seem to happen when I bend down like "normal" folks- but after my walks - note to self- grabbing a palm frond to steady yourself is about as good  as holding a flag pole in a thunderstorm.Now comes a 30-day event monitor.. Great ! I have negative feelings regarding heart monitors- stemming from a bad experience years ago. Plus with this happening daily should my Dr. really want me to wait and then wait again for it to be sent away for reading??
     Most of this stems from the fact we were just told my husband is leaving Friday for an extended stay in New England for work.. Yes I am strong! Yes I can be fearless! But I'd be lying if I didn't admit that being alone with this heart issue is scary.

Please don't get me wrong. I am not angry. I am frustrated. A good phrase is Sick & tired of being sick & tired.  I'm also concerned that this may be that time where I once again have to suck it up and realize I'm on borrowed time. But honestly, I'd rather not face that news alone.

Cinco De Mayo

     To many of you Cinco de Mayo refers to the Commemoration of the Mexican Army's 1862 victory over the French in the Battle of Puebla in the Franco-Mexican War.


     To me it does too, however I have a huge celebration as well. On this day in 2005 (yes o5-05-05) I received my third chance at a new life. I received a kidney transplant. 


     I am to this day amazed at how little we think of our kidneys, and how they bring everything into working order  in these complex machines we call our bodies. I knew I was anemic and had high blood pressure because of the the insufficiency of my kidneys. But to see the day after transplant my blood pressure reading drop to a whopping 95/64 with no meds from barely controlled 120/92 (on a good day) while taking 2 different medications is phenomenal.. I mean how can this small organ, smaller than my fist accomplish such a huge feat?


     I still have my 3 page list of foods I had to avoid. No they were not the fast foods we hear about today. These were ones I loved: bananas, oranges, broccoli, dairy, etc. I used to  joke that anything that was naturally good and colorful was b-a-d for me. I held out to the very last with my Diet Coke. Can't have caramel colored soft drinks either, too much phosphorus. I only drank them when I had an upset stomach. That too was nixed in the end.


     I no longer have my "Popeye" arm, where the fistula was placed. It was removed exactly 5 years to the day after it was put in. It had formed a clot due to non-use. I smiled to think non-use. Wow, first time I could actually say I had a surgical procedure done as a pre-cautionary  that was exactly that! Now all that remains is a long scar from under my arm-pit to just below my wrist. A reminder to take care of that lone kidney I received from Suzie my sweet donor. And the wonderful Donor Dad who agreed to let me receive it.


Today is melancholy and yet happy. Today is my celebration, while  Donor Dad is remembering his little girl he lost on May 3, 2005 her birthday. You too can honor my donor Suzie, please visit my page  and see her picture and read a little about her too. We have alot of similarities in our lives.


Are you an Organ Donor ? The life you could save might be one you love.. ♥


Recycle yourself.. Become an Organ and Tissue Donor 

Another Day At The Office

I've been noticing this grey spot right in the center of my vision in my left eye. I didn't think much about it since my eye Dr. mentioned I had floaters.  I knew when my atrial fib was acting up sometimes the vision in that eye got a sort of aura when I tried to look at things.

Well since it's been annoying me for a week, I went back to the Dr today.. And received not so good news.
It seems I have a Retinal Occlusion in that eye. So he checked the carotid arteries in my neck and all appeared normal. so he's guessing a possible blood clot broke loose and invariably settled in my eye.

Great... but just another medical issue to add to my "Medical Resume"  The good thing is that I can still see peripherally which means my eye is getting oxygen -just not enough at the moment. There is this annoying oval/egg shape dark spot direct center of my eye. Which may or may  not go away..

No, I'm not happy about it. But after all I've been through this is just another day at the office.. Tomorrow will be busier I'm sure once we get the Retinal specialist, my cardiologist and Shands in the picture.

Now to warn a few Dr's what to expect tomorrow!!

Today is the First Day of The Rest OF My Life

     How many times have we all said that ? A more apt question is: How many times have we actually understood the meaning of that sentence and carried it out?
     Every time I hear those words I wonder. Today I am 20 years old. Well , in all truthfulness it is the 20th anniversary of my first lung transplant- or my Lungiversary.
     On this day 20 years ago my life as I knew it changed forever!  I remember waking up in SICU on a respirator. Major panic! I had never been on a respirator before in my life, and honestly never considered this might happen to me. I remember after 3 days them attempting to remove the respirator, only to have my new lungs fill with fluid. Now I've always been the type you simply do NOT touch my nose! The nurse did try to prepare me for the placing of a tube down my nose into my lungs. To my defense  this was after little cooperation from her with regards to telling a person heavily medicated on pain meds to "hold your mask up so you get oxygen"  My addled mind kept trying to tele -communicate to her that I couldn't get the strap around my head. The rest is history. I woke up back on a respirator (most depressing day) and later was told - laughingly by my Dr. that as the nurse touched my nose with the tube, I punched her and tried to run away dragging machines and all. He said he had no idea that a person as sick as I was had that much strength.

      This was me on October 24, 1991. Not my best pre-birthday photo. But I got the best present anyone could ever ask for. I lived. I was so swollen from the Prednisone and massive amounts of immunosuppression that my family barely recognized me.  If you've never been intubated, believe me it is nothing like you see on the TV medical dramas. Either that or my drug induced foggy mind developed one horror story photo for me to remember the day they pulled that tube out. 

      After a few more days of trying to get my lungs to work, they removed this yet again. My Dr. sat on the edge of my bed calmly telling me that I may end up back here. Not everyone gets to stay out.  All the time I was thinking "Not me! No way! This fella has no idea who he's dealing with!"  I left and never looked back.

I later found out that my family was told the lungs I received had been badly damaged in the accident, but as my lungs were already removed and I was at the point of no return they put in the donated lungs. There was a strong chance I would be back on a respirator awaiting a re- transplant.   I knew I was a strong person, but I began to realize just how strong I truly was, mentally and emotionally.

     Yes there were pitfalls. I had a serious bout of rejection that I slept through (thankfully) . The Dr mentioned to my Daddy he may want to say an extra prayer because at that time it was all up to God. Thankfully He still considers me a work in progress with alot more work left to do here.  I did come out of that episode with my sat's at 100% and stayed that way.

     All I know of my donor was she was 34 years old, a white female, she died in a tragic accident, and we were a perfect match. It was all up to me to keep what she gave me so unselfishly  healthy and live my life as if I were dying. Every moment to the fullest!

So.. the next time you say, Today is the First Day of the Rest of MY Life will you live it differently?

October 22,1991

      It was on this day, 20 years ago I received a call that changed my life forever.

     The time was 11:00 PM. While not usually a night owl, I was awake. I was packing clothes for a much anticipated weekend trip to Orlando. Arrangements had already been made to have oxygen waiting at the hotel. I had been waiting for a lung transplant for 18 months.  Each passing day reminded me I was on borrowed time, after being given  12 months to live. I desperately needed time away from reality for awhile. Each day feeling myself get weaker and requiring more oxygen.

     I remember Mom calling me to the phone. It was my pre-transplant coordinator asking how I was feeling and if I wanted to make an out of town trip. My standard reply was, of course I'm leaving for Orlando. "Wouldn't you rather come to Pittsburgh?" " We have a pair of lungs for you." It was at this point I wanted to hope, drop to my knees and pray, but I knew to not get excited. I could get all the way there and it be a dry run. Meaning the lungs weren't viable after they got in to get them out of the donor.
     After hanging up the phone, I immediately called the Air Ambulance that was supposed to be on standby in Alabama only to find it was not in Alabama but in Texas. This simply would not do. After the pilots got in- the plane fueled and preflight done- the flight alone would be close to 2 -2 1/2 hours. This would put me over the time frame to receive a transplant. I only had a window of 4 hours to get the Pittsburgh, and be sitting for the go ahead from the retrieval team.  Thankfully UPMC had a plane sitting in Tampa that had just returned from taking a recipient back home. I called the original company to cancel and began to get suspicious, he did not need to know where my aircraft was coming from nor did he need the tail number of the plane.
        We arrived at the FBO ( private flight area) and began to wait. Suddenly 3 customs officials came walking in. I whispered they better not be after my damned plane!  They were! Seems they received an anonymous tip that this particular plane had not cleared customs after returning from the Virgin Islands. It had as it was sitting in Tampa. The trauma nurse and pilot both tried negotiating with customs to no avail. They were determined to break down ALL the machines I would need to keep me alive during the flight. The pilot offered to have one of them fly with us to Pittsburgh, tear everything apart upon landing and he would fly him home- we received a negative response to this suggestion too.
        I was slowly watching my chance at life slip through my fingers. I made a decision. I asked for a quarter. I went to the pay phone (yes there were still around) and called the local news station. I chose one that loves stories like this. I spoke with the news desk and mentioned it was a matter of life or death. When the gentleman asked who's I said mine! I told him customs would not release my air ambulance for me to receive a lung transplant and there was a slim chance I'd ever get a call again.  Within minutes, we heard over one of the customs officials radios "Who the hell called channel 4 !" They looked at us and I sweetly smiled, raising my hand and replied "Guilty"
     However it worked we were on our way! I must say that was the longest - most thought provoking flight of my life. Flying through the clouds and reflecting on my life. As we landed it was a rush to get me to the hospital. You see, I was supposed to be opened up and ready for new lungs at 5AM and we had just landed at 5AM.It was a mad dash in an ambulance!
 As we were awaiting for the official "go" I was sharing jokes with the anesthesiologist in the ER.

   Suddenly one of the physicians looked at me and asked " Are you ready?"  I replied " Is it a go ????" wide eyed and hopeful.. He smiled the most gorgeous smile ever - and said "It sure is"
And I was wheeled into the operating room on the biggest adventure of my life!

Never forget where you came from

     As this is the beginning of a very special week for me, I wanted to take a little time and reflect back on a few important times in my life.  My parents always said "Never forget where you came from, this is what shaped  your life".  So as I near a 20 year milestone with my first lung transplant, I wanted to share with you (never seen before on the web) a few photos over the next few days of how I came to be the person I am.

If  you look very closely at this photo, the person in the middle is me. I was in my late 20's .You may also notice that I was on oxygen, my feet using the canister as a foot stool.  In this photo I was already on the waiting list for a heart/ bi lateral lung transplant. I always wore my hair in a long braid because it kept getting tangled in the strap for my oxygen when I carried it.  I remember when I got all my hair cut off , because the thought of 3 months in a hospital with long hair wasn't appealing.  Can you believe no one noticed for a few days!  Everyone was so used to seeing my hair pulled back, they never considered that me- the one who swore to Never have short hair again had cut it all off.

      Even on oxygen I refused to give in. I walked everyday, even if I did not feel like it. Braving the neighborhood  dogs who always seemed to have the fence gates left open. What did it matter? I had seen jaws. I had oxygen. All I needed was a way to set it off right ? :)

     

       I have never forgotten these times. I promised to honor my donor each and everyday and live my life to the fullest to honor her a woman I never knew. She was 34 and we were a perfect match. She also died as the result of a major accident. I used to cry thinking that at her age she must have had small children at home who would never know Mommy. But it is also my deepest hope that they were also told stories of her bravery and how she saved the lives of many!

We never know

This afternoon as I was cleaning out my Xterra from today's show our Mail man arrived with the mail. I walked out to meet him, and asked how he was doing.  He and his wife live just down the street, so we've gotten to know each other pretty well.

Imagine my surprise when he replied, not too well. Now this is a man who is always chipper and positive.  My heart literally broke when he told me today was his first day back in a month. His wife had passed away. She was only 44 years old.

They recently found out she had an enlarged heart and her Doctor was trying to get it under control. She passed away suddenly of Congestive Heart Failure.  I've had this blue funk cloud over my evening after hearing the news.
This has brought back many memories for me as well. As a teenager I was a CHF patient. When I hear of anyone suffering from CHF I empathize as I remember how I felt all the times I struggled to get mine under control.  For years I randomly coughed blood and we never knew why. It was discovered when I was 17 that the pressure inside my heart and lungs was 6 times higher than it should be. This high pressure was  causing my blood vessels to bust and I was literally drowning in my own blood. Not everyone has this same issue with CHF.. Most retain fluid and take diuretics to control the fluid retention. Symptoms are swollen feet, ankles, hands, etc.  I was always one of those lucky people that it never showed , asypmtomatic. That is until it was at a critical stage.

At one point I remember driving myself to the ER only to discover it was CHF rearing it's ugly head again.  Note to self- Do not driver yourself to the hospital at 3AM and then call to ask your parents if they can come and get you.  Or at least hold the phone very far from your ears. Lesson learned.. Call Mom & Daddy first.

Please take a moment to remind yourself that not all health defects show themselves, and give that stranger a smile or a helping hand. It may just make their day..And please say a little prayer for my Mail man Tim to help him through this rough time..