Thursday, May 20, 2010

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!

Tuesday, May 11, 2010

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.

Thursday, May 6, 2010

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!!

      

Wednesday, April 28, 2010

Dreaded Dentist

Well  I finally decided I better update the dental issue.. MY pocketbook is going to be in serious recovery mode.. It appears my tooth is cracked completely down the center.. UGH.. And as if that weren't enough the back moves independently from the front.. So it's loose..
The dentist gave me these options:
1. If he can remove the back without hitting the nerve or root, he can then do a root canal and cap the tooth.
2. If the tooth brings the root with it, I can have the teeth on either side prepped for a bridge.. Ruin 2 more teeth?
3. As in no. 2 I can opt for an implant.
Me, an implant?? never thought it would be a tooth???

Well the worst case scenario came topass. The dentist got the back piece off, and holding on for dear life was the root. The tooth had to be completely removed. If only the 2nd piece would have come out as easily as the first.
It took another hour to get the other half of my tooth out! it also took 8-10 stitches to close the gap.
Have you ever tried to tell a dentist that the stitching thread was tickling your nose it was so long-AND try not to move? I mean this man has a needle going for my gum..

I believe we are settling on the implant as he hates to ruin 2 other perfectly healthy teeth.
It will take about 8-10 months to complete, all of which I will be missing a much needed tooth.

At least maybe this way I can save a little of the $2900 I'll need for this little work of art..

Wednesday, April 21, 2010

All-nighter

     Well I finally decided to get up after a long-long-sleepless night. My dilemma is due to a wonderful antibiotic called Levacquin. Levacquin is one of those "upper end" antibiotics, you know the kind. Designed to knock anything, and I mean anything out of you. I took only one, and trust me that is all anyone needs.
I was prepping for that dreaded dental work I have to endure later this morning..
      I realized yesterday evening the pain in my back was also one of those lovely side effects, which would have provided a great excuse from housework. Sweeping the floors was utterly a chore this time. Upon my realizing this, I began hoping and praying the excruciating headache would not appear. Wrong. It did appear, just as I was falling asleep, and has lasted me through the night. You know the type. If only I could get my head in one comfortable position long enough to fall asleep, kind of headache. Well tonight there was no comfortable position, because along with the headache, a distant cousin the stiff neck also came along for the journey. I remember when I had to take Levacquin for almost a  year, wondering when all the side effects would just go away...Far..Far...away. At one point I remember thinking (so sleep deprived), "Am I really awake, or dreaming I'm awake?" Either way I was so tired it really did'nt matter.
      So, after wondering; Could my blood sugar be making my insides feel all goofy?, or Can it all be this darling little pill? I decided enough was enough, a body can only be uncomfortable for so long. I got up. So here I sit, straight as can be, not moving my head. It hurts less when upright, so the rest of the night it will be so.
       Thankfully blood sugar is fine, so it must be the Levacquin. Darn. I am typing this as my coffee pot brews that wonderful life saving blood I so need today. Hopefully, even half-caff along with a Tylenol (yes I checked my temperature first) will alleviate this feeling that my head has been pile driven onto the cement a few too many times. On a more positive note: Maybe I can fall asleep in the dentists chair and not remember a thing... Here's hoping..

Monday, April 19, 2010

I was hacked!

It appears someone is having fun attemtping to hack into many of my accounts.
So far I've had to change innumerable passwords. Being on Prednisone and so many things going on at once I have trouble remembering them in the first place.

I received a mesage from Facebook that someone from Canada was trying to log into my account with a smart phone- Not so smart.
Now issues with Google and my blogs... Not to mention a few other places.

I guess some just have nothing better to do or nothing interesting in their lives..
well, hopefully all will calm down now.

I have been lax in posting also due to attempting to promote my business and other blog. But mainly due to severe-(and I mean severe) allergies as well as cracking a tooth which now need major repair...
Lovely---I hate going to the dentist... Transplant-no problem, Dentist-dread like the plague.

Thursday, April 8, 2010

National Organ Donor Awareness Month

April is our month. Our nationally recognized month to promote organ donation/transplantation. Our one time to go above and beyond to make sure those who are still "waiting and dying" for a life saving organ get the chance we've had.  Or in my case the "many chances" I've had.
       I recently posted this on my Facebook page, Bette Luksha-Gammell wants to know. If you could go back to a crossroad in your life, would you go or would you take the same path knowing the outcome?
I posted this mainly to see what the responses would be. As I suspected the replying comments were from friends in the transplant community.  We all,  candidates & recipients have a common mental bond with this question. We seem to immediately apply questions such as this to the desicions we made on our health. The meaning in effect is that transplantation is our life. Our one true goal is to live. Not just to survive, but to Live.
        Along with this goal is the obligation to spread the word about organ donation. We must give back. Someone was spreading the word while we lay too sick to do so. They helped us to survive long enough to Live. Now, we must all join the fight to make sure those waiting get their chance at Life as well.
It is necessary to dispel the negative rumors still in circualtion regarding organ donation.
       As I write this, the current total for those waiting has hit 106,886! 
The total number of transplants in January 2010 was a mere 2,198.  Is it any wonder so many "die waiting"?
I could have been in this category three times. Yet, I was Blessed with a perfect match each and every time. Like many of you, transplantation changed my thought processes, my ideals and goals. At the age of 31 I could actually dream of a future. I got this wonderful spring in my step, this joy for life. The simple things that meant so much before, well their meaning has reached astronomical proportions. Facing death, a person learns what is important and to never take anything or anyone for granted.
Live like you were dying. We know the true depth of this statement. Enjoy and cherish each and every memory -good, bad and otherwise. For you might not have been here to even endure them.
     

      But most importantly-GIVE BACK. PAY IT FORWARD.. Give someone the chance to experience all the obstacles this life has to offer.  Promote organ donation/transplantation.  Sign an organ donor card and tell your family. One day you may wake to find a loved one needs that life saving donation. Please don't wait until that time to sign that card. Do it now... You won't regret it.

Share your life....... Share your decision.... Recycle yourself......

Sunday, April 4, 2010

Friday, March 19, 2010

Busy days can turn blue.

  Upon waking this morning I realized it was going to be a busy day. I took my three boys for a quick walk, being ever mindful of little DB.  DB is my little Toy Fox Terrier with a huge Alpha complex.
Our veterinarian has been treating DB for a severe heart problem for a few months, and it was time for his yearly physical and shots.
    We've already increased the Lasix to twice a day if needed, but definitely once a day at least. Well, to say the least DB felt like Top Dog being able to go for a ride alone, without his brothers hogging windows and seats. He normally loves our veterinarian Dr. Ebert. Today was no different, he accepted his shots like a trouper, but decided he wanted no part of the nail clipping.
      After DB was brought back in the room with me, he hid under the chair.. As usual his limit had been met.
Dr. Ebert came in to tell me his labs were good and he was ok to go home. His parting comment broke my heart. "His heart sounds horrible."
     Four words-one small sentence, and my world comes crashing in. I've mentioned that through his initial diagnosis and meds, I began remembering my "old" health issues too. I remember running to find a bathroom when the Lasix kicked in. so I can only imagine a small 10 lb. dog on 20mg of Lasix.. We all hate to face the fact of a possible loss in our lives, more so when it's a Beloved pet. But DB is no ordinary pet.. He is the most Independently dependent canine I have ever had the pleasure to share a home with.
He must be on your lap if you sit down, under a blanket to stay warm. Then he is in total doggy heaven.
As I write this he has tucked himself under my sweatshirt to get close and warm. And snoring.
When DB is held, he puts his head on your shoulder and you feel the love and warmth all this little animal has to give. He is without a doubt -my best friend. Not mans'-mine.
      DB has offered me comfort through chronic rejection with my first lung transplant, my second single lung transplant, neighbors poisoning his mate (an Airdale Terrier), losing his friend Maggie (Shih Tzu) to cancer, a kidney transplant, a pacemaker, and the list goes on.
     I will take the best possible care of my little Alpha Dog. He has already earned his wings, but I want to keep him firmly planted on earth as long as possible.

Monday, March 15, 2010

Go Gators

Now I don't mean the Florida Gators at University of Florida. I mean the Florida Gators as in alligators.
For the last few weeks on my morning walks I've seen a family of turtles (4-5) sunning the bank at a small pond on the Sumter Greenway. They always manage to duck back into the water before I can snap a picture.
  This morning was a little different. As we started out and rounded the corner from my street onto Sumter, I again greeted the turtles but slowly floating in this small pond was a small alligator. It was no more than 3-3.5 feet in length. I quickly grabbed my phone to snap a photo, but alas having had my Blackberry only 2 days I took longer than he wanted me to. He slid to the bottom. Hopefully, NOT to jump out and attempt to grab one of my boys. Then it would be a fight to the death. No one messes with my boys.
    We continued on our walk so the turtles could come back out and have a peaceful afternoon. At the next drainage pond, I looked in the distance searching for the 4 footer that usually basks on this bank. He was there. Suddenly I heard a loud splash close by-signalling possibly another gator in the area. Seeing nothing I went back in an attempt to zoom in on the other gator in the distance for a photo. I took a few and as I was leaving glanced down to the drain opening and there it was. The other gator that made the splash. Nose pointing at me, definitely warning me to stay out of his pond. I snapped a few quick photos, tightened the boys leashes and we finished on our walk.
      Nature makes my morning walks much more enjoyable to trudging on the treadmill. My dogs chasing everything makes the walk interesting. I've been concerned that our little area might find it difficult recovering the unusual cold winter we've had. Thousands of fish were killed and had to be removed from our waterways due to the 10 days of continual freezing lows. Our yard is normaly filled with lizards of every kind and variety, but none so far... disappointing indeed. My giant rain frog who is renting space in my rain barrel is still alive, but I think his wife has gone to a warmer climate.
    These walks as well as all my little creatures make my day easier. It's a calming way to face the day with no stress.  Release those endorphins and take a short walk-or just sit outside and enjoy nature. The effects can be amazing..

P.S... I am a UF Gator too... Born that way-and thanks to the great people at Shands reborn that way.

Tuesday, March 2, 2010

Disappointing editorial in todays paper

I read the following editorial with increasing dismay this morning.
apparently all those promises of NO CUTS TO MEDICARE we were
promised were once again false campaign/ presidential promises.

  While this may not affect many of you in other states, it has a huge impact on Florida.
Many retirees have chosen to make Floridas warmer climates their homes in later years.
With these cuts those reitrees who are not in perfect health and the disabled all which are
ineligible for a Medicare Supplement will be hit hardest.

  Once again, those who can least afford it, will be the ones to be made to pay and struggle.
I have been in situations where I had to juggle finances to achieve the unthinkable.
Pulling my hair out, and wringing my hands in total despair was not my idea of fun.
Why should the disabled, organ transplant recipients, and seniors who have been denied a Medicare supplement once again be forced to choose between life and health care, prescriptions, etc.
And why, can someone tell me, why should a physician have to feel the brunt of watching their patients suffer due to financial difficulties and Medicare cuts?




More Medicare pressure



I have been a practicing internist in Venice for 10 years. I am writing concerning Medicare cuts in physician reimbursement, not to make readers feel sorry for doctors, but to let people know how these cuts will affect them.



Physician payments through Medicare are based on a formula called the sustainable growth rate. This has resulted in yearly cuts in physician reimbursements, which have been delayed by last-minute acts of Congress. These fixes, for the most part, have resulted in fees remaining the same while expenses continue to rise. This year, Congress put a two-month patch on the problem. It expired March 1 and physician reimbursement was cut by 21.6 percent.



What will happen as a result? Physicians will drop out of the Medicare program en masse or, if they're able, they will retire. Many will go out of business. Florida physicians will leave for areas with fewer Medicare patients, resulting in Medicare patients losing their doctors or paying them out of pocket. The doctors who remain will cut costs by cutting staff and services such as after-hours care. This will result in further pressure on emergency rooms. Doctors will also begin charging patients for things such as phone calls, prescription refills, etc.



Readers, tell your congressmen to fix the problem. If not, you'll have other chances, because reimbursement is supposed to be cut further to a total of 47 percent by 2012. But, by that time, there may not be any physicians left.

Eric Lough, M.D.
Nokomis, FL

Monday, March 1, 2010

It's Monday

I should have known this morning was going to start out wrong when I looked out the window last night and commented on the gorgeous full moon.
   While retrieving a fork from the dish drainer (Yes I hand wash my dishes) a glass bowl fell. I didn't realize until today how heavy glass can shatter into a million -yes million shards of tiny red glass.
Broken glass managed to make it into 4 rooms of the house.  Ozzi hit the pet door -planning never to return and the other 2 boys shrunk back under the blankets where they were sleeping. As I was just finishing sweeping this cute little black nose peeked through the pet door-yes Oz it's ok to come back in. He hates loud noises..
    For the walk... DB is annoyed because his leader leash broke yesterday and doesn't retract all the way inside the casing. I literally  had to carry him 2 blocks and will probably again for todays walk. He's only 10 lbs and a toy fox terrier, so anything dragging is an anoyance.
    I tried sending a msg via text on my phone and ATT is refusing text and wants to charge me multimedia- so a visit to the local store is on my list today. My honey do list is getting larger by the second.


What more is there to say?  It's Monday... But the bright side is I get one hour of awesome TV with 24!

Thursday, February 25, 2010

Please vote

Year of the River City-wide Photography Contest Jacksonville.com#SD#SD




Please go to this link and vote for the photo "Rosy LazyRiver" it was taken by a very dear friend and heart transplant recipient Lon Bullman.
I think it's the greatest photo on the list..


Thanks to all.

Monday, February 22, 2010

LabCorp continued

I've left a few online requests at LabCorp.com for someone to please contact me because I need to have an issue resolved... Nothing in a week.
Guess they don't respond via email either.

Anyway, since I am taking the Multaq I've reduced my Prograf from 3mg twice a day to 2 mg twice a day.
Might save a little money-until I find out how much the Multaq will cost me.
 I still feel my heart race for 10-15 seconds at a time, so I'll have to wait and see if it's really going to help me or not.
I have discovered that an elevated blood sugar will wreak havoc with my body along with the heart. So another reason for everyone to keep your blood sugar in control..
It took about 3 days to feel like really getting back to exercising after starting to take the Multaq, but now I'm bakc to my 2 miles in the morning with the boys, plus hitting the treadmill for another 30 minutes after dinner.
Next I hit the gym again.

Tuesday, February 16, 2010

LabCorp-Monthly lab visits

Many can relate to the monthly bloodwork we have done to maintain our immunosuppressive levels.
Well I've had to try and calm down after my visit on Monday to LabCorp.
I always go online to make an appointment, since we my labs must be done on Mondays and a purple top
tube FedEx'd to shands.  The labs here are always packed on Mondays and Tuesdays, especially during season, the reason for my appointment.
  Was I glad I did! The place was mobbed.To my dismay there were all new technicians, and the lady at the front desk was clueless. If I didn't know better I swear she's probably pulled her hair out by now after all she handled. I was concerned since I have one good vein left and only one person I know can find it the first time.
   Well I got there at 8:05 for an 8:15 AM appointment and signed in. The receptionist made so many copies of my lab paperwork I cringed at the thought of the loss of  a rainforest.  And she gave me 3 copies back of the same piece of paper.! I finally got in the lab, the tech. looked at the paperwork with a strange look. I immediately thought, "here I go again" having to explain in detail what the paperwork says and that I take a tube with me for Fed Ex.  The tech looked at me and said, "But we do this test here." "Well, maybe but you do if differently than my transplant center." I pointed out that the second piece of paperwork stated I would take a purple top tube with me. She responded that she had to call her supervisor. "I want to speak with her when you get her on the phone, and I have to get on the road to another appointment."   She got the supervisor "Nan" on the phone, who asked me if I was having other bloodwork done. When I replied yes, she said well then I'll allow it.. YOU'LL allow it? I've been doing this same procedure for the last 8 years.
     The issue was that if the Tacrolimus was the only blood draw I was having she was going to refuse. Labcorp would get no money for drawing the blood. No mattter what my paperwork said.
I asked what happens if my levels are off and I need to get the Tacrolimus re-tested in a week? No answer..
In talking with the tech she mentioned that Lab Corp regularly moves their techs areound so they don't get too comfortable with the patients. I advised her that this is inadequate patient care. The regular techs would have seen my appointment and if there were any issues it would have been handled before I even got there.

   I finally got out of there at 8:55. A quick appointment  which should have been easy took  50 minutes!
I was also given a phone number for this Nan and advised to have her fax me an approval letter for the next visit... Yeah right.... Nan has not answered her phone since yesterday nor has an answering machine.

At this point I've renamed LabCorp to LabCrap.

Thursday, February 11, 2010

The heart will have its way...

     I realized that I forgot to update my blog as to my heart rate issue and the heart monitor.
Well to  make a long story short I went to the Cardiologist, he wasn't there, so I asked the pacemaker nurse
why I needed a heart monitor since I had a pacemaker recording every beat my heart makes?
The response I received was that a heart monitor records everything in real time.. Doesn't the pacemaker?
Well, yes. I then asked that since this only happens about once a month, and I just had my monthly occurrence what would the monitor record?  Nothing was the answer.. So she ran a copy of my pacemaker and I came home.
   Wednesday morning I received a phone call from the office and the doctor wanted me to come in earlier and speak with him...  Uh oh..in trouble now...:(
     I recently went to the doctor and we had a nice chat about my options. I now have Atrial Fibrilation where I had a type of Ventricular Tachycardia before. The ablation worked last time because it is not as invasive and difficult as the a-fib.. Lucky me again.. I had the option of taking meds as needed when the A-fib started like I was doing, taking a daily med to keep my heart calm (yeah right), or trying for ablation.
since ablation for A-Fib is more difficult and does not work as often I'm not ready for this right yet.
     I've chosen to take Multaq at a half dose to keep my heart calm and prevent the A-Fib from happening.
I wanted to do something because the longer a person stays in A-fib the more likely they are to have a blood clot or a stroke. Count  me out on this score. I have enough to deal with, without dealing with this too.
Feeling a thousand butterflies beating to get out of my chest is bad enough, but to worry about blood pooling in my heart and a stroke... Not this girl..
    Sometimes I truly wonder if I would have been better off receiveing a heart and double lung transplant like I was originally listed to receive.. I am positive my doctors (all of them) will have reasons to veto this train of thought.

Wednesday, February 3, 2010

Email from a good friend Tonya

Below is a copy of an email I received from a good friend. Please pray for this family as they send a loved one on to save others:



this is from another board I belong to...


I have copied it over to here for our family to call prayers up for the family..





Two of my nephew's very good friends and wrestling buddies were in a horrific traffic accident this past Tuesday. I did not post then as it seemed neither would survive but both are still clinging to life. The boys are brothers Will (17) and Cordell (15) last name are kept private per parents request.

Cordell has been on life support since the accident and the doctors were looking to take him off but the father felt his hand move and thought it very deliberate by the third time, most doubt it was anything but involuntary but we are still praying for a miracle.

Will came out of his coma but his reaction was so traumatic and his pain so great the doctors had to put him back into a medically induced coma.

This is a wrestling photo I have with my nephew in the front, Will is directly behind him, and Cordell is to the right.

The family is in a state that I cannot begin to describe (as well as us as friends) so all prayers to God our father for healing, comfort and peace will be greatly appreciated.

Thank you~ Penny





Cordell (the young man on the right) was taken of life support and has passed.



The family wanted to let others know that Cordell will go on to save others specifically, an 11 year old boy will be receiving his heart, a 38 year old man his lungs, and an infant part of his intestines. The doctors say that he could save 100 lives.

Sunday, January 31, 2010

Dogs, Days, & Possible Depression?

You may not be aware but I moderate the comments that come through this blog. I moderate mainly because I  do not want any profane items showing up.
  That being said, yesterday I had comments to moderate for my previous blog "Today's gonna be a great day". I opened the comments and was unsure of how to respond or if I should.  The comment left was:
"Every dog has it's day", and this bothered me. I've thought quite a bit about my reaction and others if they had read them.  My Prednisone fogged brain immediately saw the negative. Thoughts that ran through my head were: What! Are you jealous?, How dare you?. The more I thought about it, the more I wanted to contact the person leaving the comments and ask if they would explain why they would leave such a comment.
     I've discussed this with a good friend and his response was the positive side. Yeah every dog has his day and you finally get to enjoy yours! I somewhat agreed, but why post it that way? Congratulations of a Gift of Life would sound more apporpriate.  During our discussion I had the epiphany that possibly this person was depressed, maybe waiting for a transplant. I explained my reasoning as this person was reaching out for a shoulder or someone to listen and say, I've been there too. Thus the true meaning behind my blog.
     First let me remind everyone reading, that the sole purpose of my blog is outreach. To  help the healthy understand what we endure in our quest for survival , but more importantly to be there for those candidates and recipients who need to hear it's ok to feel this way.  Please don't misunderstand  that because I sound positive now, this does not mean it's been a perfect day at the beach the last 20 years of my life.
It has not, by no means.  But and I state this emphatically, I have been there, I have conquered whatever  the medical field has managed to throw at me, and I am still positive and ready to tell everyone about it.
     So I would like to close by letting this person know that even though you left the comments, I hope you can let me know you are OK. More importantly if you need someone to listen while you let all the anguish out, I am here. If not me, I will happily put you in touch with others like me who care.

Thursday, January 28, 2010

Today's gonna be a great day!

While this may be great lyrics for a song- The Blackeyed Peas just in case you haven't heard it on TV, I have gotten in the habit of telling myself this each and every morning. I am Blessed to wake up. I am Blessed to be out of the wheelchair. I am Blessed to be off oxygen. I am Blessed my kidneys work and no  more diet restrictions.
Let's face it... I'm Blessed.
Actually we are all Blessed to be alive and enjoying life's good moments and obstacles. It wasn't that long ago I was told (3 times) I was going to die. Those are words no one should have to hear, especially at 17, or 31, or 45 for that matter.
  I actually didn't hear it at 17, my parents did and told me later. So there wasn't much impact. I did know that my life was going to be shorter than most. So I justified it by telling my parents my philosophy:
"If I die old -no one remembers, BUT if I die young, no-one forgets."  This was merely a way for me to put this part of my life in perspective, and cover my nervousness.
 This death sentence was always pushed up each time I hit a new milestone. When I passed 20 it was pushed to 25, then to 30. I guess back then it was all the doctors had to go on. I remember mentioning to my Mom that turning 30 was difficult enough, geez do they have to put a death sentence on too?
   Of course there were hospital visits during all of this. After all, I was a boisterous young adult. Plus I was told to go out and live my life to the fullest. If I died, I was going to anyway. Good thought. I took all this in and did just that.
     Waiting for the first transplant didn't seem so bad. I had all this time to prepare for my impending departure. You might say I had consigned myself to the inevitable. NOW,the second was devastating. To say it was devastating is an understatement. To spend 9 years of total freedom, doing things I never dreamed of and then be told I had chronic rejection was enough. The disease and destruction was so fast I found myself wishing I still had Pulmonary Hypertension. After all, it was easier to deal with.  To be given soemthing so wonderful as breathing, set goals in life, achieve those goals and then .... You get the picture I'm sure.  Oxygen, wheelchairs, gasping for breath, total and utter defeating debilitation. This time was extremely difficult for  me to accept. I was NOT ready this time. Please don't take away what I've so recently learned to enjoy!
   This is the time when I began to find comfort in so many little things we take for granted. Sitting outside in the morning with a cup of coffee watching the breeze blow through the palms, a light rain on leaves, the calm of a glassy lake. I also began continual conversations with God. I've talked with God all my life, now we were best friends talking about everything. He convinced me to use my every ounce of energy and breath to get out of bed each morning. Take my meds. Eat-when I'd decided breathing was more important. God was my support system, my main support system. Most of my days were spent alone, so God was my only friend and He stopped by to visit all the time.  He taught me to look in the mirror every morning, see a face in pain, smile and say "It's gonna be a great day!"
 So with each new hip pain, knee pain, whatever new obstacle thrown in my path:  I still tell myself this every morning. It works.

By the way ...I still love the small wonders around me. Yes even the rain and cold.