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

It's Just Me Again !

     I have been regularly berating myself for not posting, however once again why post if it's negative. I've been in that mood of "just nothing to say" for awhile now. The day to day struggle can wear a person down, and reminding myself to just get up and do it, doesn't always work.  The mind is a powerful thing when it does not want to budge.
     After discovering I was experiencing every side effect from long term use of Colistin, I have been changed to a different inhaled antibiotic. I am now using Amikacin, and it was amazing the first 3 weeks ! I had no cough, I was sleeping ALL night and my energy returned. Sadly so did an excruciating earache. Not just the ear, this extended all the way down my neck - ear canal- type of ache. Nothing worked. I then discovered in rare circumstances it can cause hearing loss....
Hmmmm choose between hearing or having my lungs.. Difficult choice huh? I stopped the Amikacin for a week,, and the cough returned with a vengeance. Yes , even to coughing so voraciously I lost my breakfast in the mornings. We decided to try once a day and see if kept the infection at bay. It did.. Well until December, when the nebulizer paralyzed my vocal cords... Yes ... completely.. I had no .. NO voice.. and it was painful to try and talk.
      Eleven days in the Florida Keys in relative quiet. I guess my husband handled it quite well ;)
It was still the best and warmest Christmas to date. We played with a family of Manatee that were residents in the marina, and basically enjoyed the sunshine. My neice and her family came to visit for a day, being stationed in Key West, made Christmas away from family, better because there was family. Went into Key West for a day and Ozzi discovered the famous Key West Roosters !  We tried to visit again and after finding NO parking chose to go back to the campground.. Money saved-right ?
      Ten days on Cipro for Diverticulitis caused me to once again stop the Amikacin. I had severe Vertigo and didn't need to give it anymore help. Now it is with regret, that I go back on schedule with the nebulizer, I feel the need to fight this infection once again. I will admit, the freedom of being away has been such a heavenly relief..
For now.... Back to the grindstone....  Well until the earache retuns again anyway..

Life is a series of things we simply don't want to do... Do them anyway.. It matters ..


   

How Would You Like To Be Remembered ?

      Over the last few months, I've witnessed quite a bit of bitterness in the Social Networking Groups and Personal pages of friends. It has me worried. I keep seeing, "I don't want to die waiting". "I can't wait for my transplant so I can get off oxygen". " I need to be transplanted now!"  More often than not, I see posts filled with bitterness and anger. Is this how we want to be remembered?  Someone who was bitter to the end?  Or do we want to be thought of with warmth and thoughts of she smiled to the end...

Think about it....

After working in the medical field for years and witnessing a variety of emotions from patients, I made a solemn vow that the bitterness would not over take me. I would have no regrets.  One of the best things my transplant center did was stress...
1. You may not get transplanted.
2. You may not come out at 100%
3. You may come out and still be on oxygen.
4. Live your life NOW

I always kept this in the back of my subconscious.

If I didn't get my transplant, well I died trying and gave it my best- laughing to the end.
If I didn't come out at 100% or on oxygen- I would deal with it. It's better than where I was right?

I was also told to not spend what time I had left pinning all my hopes on a transplant. What was left of my life would fade away without me realizing it. I hope others take that to heart.  Too many times we focus on this pain or that ache and not living life.
Life is meant to live- no matter your limitations.. Enjoy your family outings even if from a chair. You are there.. Your family is overjoyed you are there too.
Those birthdays are so important. Many parties show me celebrating with the birthday person on oxygen. I have a wedding photo while on oxygen. This is my life and my memories !

I cannot let anyone take those from me, or not experience them due to bitterness. Refuse to let it consume you.

Point to ponder... If you pin every hope and dream on a transplant- what happens if you don't come out 100% ?

Acceptance -OR How To Survive In This Crazy World

      Over the last few months I've read many posts on Social Media about others health issues, life struggles, etc.  It pains me to "feel" the heartache I sense coming through their words. I met a sweet lady, newly to the possible transplanted community recently, she stated she just finished reading my blog and wasn't sure if she could go through all I have.
     First, let me say ....  Not everyone will go through all I have. With the advances in medicine today, many will soar through their health issues with flying colors. I have met some of these new trail blazers and they warm my heart. Those of us with more than 15 years behind us (24 here) were the trail blazers of our day too. We helped spark that debate of, "What makes them thrive?"  How does patient A live for 20 years with a transplant, while patient B rejects within 2 years?

     I believe it can be summed up into two words: Acceptance and Overcome
Let's look at acceptance.
I accepted in 1977, I may not live to see 20 years old... I overcame it.
I accepted that in late 1989, I was given 12 months to live... Back then a physician had to give you this "death sentence" for  you to be listed for a transplant.. I overcame it. On that 365th day I woke to a sense of , "is this my last"  then I thought NO it will not be.
I accepted when my transplant team told me, this could be the last few years of my life- go enjoy it.
I cried over things I  may never see again: the wind in the Palm Trees, the ocean, etc. BUT I overcame it by NOT falling into a mind trap of doing this everyday.  I gave my "crying time" a priority of one hour once a month. The rest was devoted to my life. Each month I took my "woe is me" box from the shelf, opened it, had a good cry, closed it- and continued my life.

Just before Y2K, I was told I had chronic rejection. I was floored. Back then, it was a death sentence to us all. I cried for a few hours, then hit the Internet.. I researched, I read, and I researched more. My team gave me a game plan of what needed to be done. I accepted it. This game plan was my light at the end of the tunnel. It was rough.. It took all the strength and will power I had in me. BUT I DID IT! I learned I am stronger than I ever imagined, and more importantly I learned how to draw on that strength. We stopped the rejection... but...

I was refused a 2nd transplant....

I did not get depressed- I went into action. I contacted EVERY lung transplant center in the nation - and some were not so nice to me either. I found one who would evaluate me !  My new center saw a determination in me that my first one did not. I did everything that was asked of me.Limited breathing capacity, on oxygen (again), and knowing I would need a new kidney after my lungs were re-transplanted. Each time I was rushed in to the hospital, my Dr would give me a game plan of what needed to be done, I would reply "OK" . He knew beyond a shadow of a doubt, I was in 150%. I never asked how I would feel, if it would hurt, just "when can we start".
I overcame... I got my new lung, and stayed on a respirator for an additional week to give my kidneys a rest.
My next Acceptance was needing a kidney transplant.  I did all they asked- except - accept that I would need dialysis. I researched...  I had 3 pages of food to avoid that I created. Orange highlights had Potassium, Pink had phosphorus and green had both. I severely restricted my diet- never got dialysis... I overcame.. The thought of a 16 gauge needle in my arm gave me all the determination I needed.
If you have read most of my blog, you will remember that last year 2014 was not a good year for me. My right lung from the original transplant is becoming a little bothersome. My transplant team basically sent me home with the statement, there is nothing more we can do.  I took this as being sent home to die. That is NOT being depressed. That is a call to action!  Within 3 months I was back to my original strength, walking twice a day, swimming, and enjoying life within my boundaries. I asked one of my team if they had any idea of how long I had. I secretly wanted to prove them wrong :)  He replied with anyone else I would estimate- you- we have no idea. That made my day !

I accepted this too... And I am overcoming it.

I have recently lost another beloved pet.. My Toy Fox Terrier CC (Capt Chaos) has left me. The loss of both "boys" has been hard. Dibs was due to an enlarged heart and CC to kidney failure. Both of which I can relate to.  I still have my Ozzi with me. Though we have a deal- he will live forever as long as he is the only dog. You see, he thinks it's good being the king :)

This is not to say my life is all peaches and roses. I have a new regimen I follow to keep my right lung from affecting my left. I know I can still exercise, Dr. Baz taught me that when I was dying for a lung transplant. I can surely do it now. As my right lung wastes away, I can make sure the rest of me stays as healthy as possible. I will not give in ! That is not in my chemical, physical, or mental make up. It is not a fun journey at times, but it is still my journey to live. I intend to make it a grand adventure !

I have stated many times in my life, I CANNOT AFFORD THE LUXURY OF A NEGATIVE THOUGHT.   This is more true than you will ever know, and has kept me from depression.

So... Accept and Overcome.. No matter what you face in life.. If you are diagnosed with Diabetes, Heart disease, or any other ailment- Accept it Now. So you can Overcome it and triumph ! For to not accept can only lead to more health issues down the road.

I would like to take a moment and thank Maher Baz MD for all he taught me through his time as my transplant physician. It is the inner strength, he showed me I had, that I now draw on. I think back to his teaching during the wait for my 2nd lung transplant and the quiet confidence I felt he had for me to overcome. I will always attribute my life and how I choose to overcome my obstacles to him.

Changes

    New year always brings change. Resolutions would be the first to come to mind.  I've had changes more akin to upheavals.
    First was the departure of my lung transplant physician and my Coordinator his wife.  I'm still getting used to this.  It's difficult to trust another doctor , when this one has kept me alive for 12 years.
   I've been working with my Endocrinologist for the last year , watching my thyroid enlarge while my Hemoglobin dropped. Even kidney transplant is concerned.
  I've been patiently waiting for my appointment on Monday.  We are so close to a resolution.  So , tonight I get a call from his office.  Today was his last day.  *huge sigh*. I am stuck in a country song.  "Here I go again. "

Grinning. .... at least I had a nice dinner at Olive Garden beforehand.

Retinal issues .

If you've been following my blog, you may remember a few years ago I had a retinal occlusion in my left eye that was hemorraging.  I got shots in that eye and to this day still feel reminiscent that I was somehow auditioning to be a victim on the show "Criminal Minds".

I stress with each check up I'll once again hear "you need another shot". Today was another reprieve,  however the EpiRetinal membrane has gotten a little bigger.  These membranes eventually cover the retina and vision is distorted,  blurred, and eventually lost.  Surgery can remove the membrane,  but my specialist feels I wouldn't have a "marked" improvement.  So I chose to wait until it would be a marked improvement in my vision.

Yesterdays CT Scan showed my thyroid has gotten larger, and is pressing on my trachea.  This could also be another reason for my coughing until I choke.  More 5o come on that as I know.

You may be thinking "what else?" Believe me,  I've asked myself that before too.
When I say my health care is a full time job, I mean it !

BUT. .. I am still here.  I am still fighting.  I still have alot to give.
I knew 24 years ago,  and still agreed to be listed for that transplant. The overwhelming thoughts of a life off oxygen,  no wheelchair,  and the ability to breathe make this journey more than worth it.

Remember to always be thankful for what you have- good,  bad,  or otherwise for the alternative for me was to not be here at all to experience this life.  

Grab life with both hands,  stand strong and hold on tight.  It's gonna be one helluva great ride !

Decisions

After receiving disheartening news in December, I posted the news on Facebook.
It seemed ironic that I normally go to my clinic visits feeling uncertain, only to hear how well I'm doing.  This time I was feeling great, and got a less than favorable prognosis.

Lung transplant dropped the chronic rejection bomb, while I discovered  my paperwork also showed stage 2 kidney disease from kidney transplant.

After posting my thoughts on FB,  I got many responses.  Most encouraging my determination to do this on my terms.
However, I think one read it incorrectly.  tge response was "I've been in stage 3 for years".  Replying about a lung transplant
It was stage 2 kidney disease,  scary in itself being a kidney recipient.

However a first time lung transplant has the possibility of being relisted.  Me,  having had 2 already my chance  is next to nil for another.
I'm not being nit picky,  merely to set the record straight.  I remember my years of chronic rejection, and the fast downward spiral.  I have no wish to go there again,  though I knew it would one day happen  I don't miss the nose wedgies and bloody noses from oxygen.  My wheelchair has been in solitary confinement gathering dust .I have no desire to grant it visitation rights to my derrière.

Mostly, I do not miss the shortness of breath when talking. Being forced to decide between eating and breathing.

Or the realization that my life is slipping away.  It is pure hell having an active mind in a daily weakening body.

Which is why I posted my life on my terms.
I am slowly rebuilding my endurance,  no small feat with a negative reserve of energy. Let alone the breath.

I'm walking more and have taken to my bicycle in the hope of keeping my wheelchair in solitary confinement.

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 

Cinco De Mayo !!!!!

This day six years ago was one of the luckiest days of my life!

You see, on May 5, 2005 yep, 05/05/05  ( gotta be lucky) I received my kidney transplant.. To make it more coincidental my surgeons name was Dr. Foley! Those of you not around medical issues probably wouldn't understand the humor.The relation of Dr. Foley and "foley catheters " was not lost on me.

********** So ..... today I am 6 years old **********

I get to run, play , jump on the bed to my hearts content1 I'm a kid again!!!!

But none of this would be possible without the gracious Gift of Life from my donor Susie Paxton.  There were a myriad of coincidences that year.. My Donor Dad had removed dear Susie from life support on her birthday May 3,2005- and graciously gave me a true Gift on May 5, 2005. I lost my Daddy on June 3, 2005 and he was 30 days from his birthday on July 3,2005.  I wrote an anonymous letter to my donor family one year later and through a few letters I finally spoke with Ron Paxton who I now call  my Donor Dad.

Life throws us many curve balls, but it is true that when one door closes a window opens..  I discovered that Susie and me had many similarities with very different outcomes. I owe her and Donor Dad my life. For you see if not for the kidney transplant eventually the lung transplant and the rest of my health would have gone into a steady decline.

If you have a moment, please visit my "honor page"  and meet Susie... She is a true gift to all !

It's That Kind Of Day

Have you ever had a bad day and said that. "I'm having that kind of day." For a long time I changed it slightly and said "I'm having one of those lives."You know the kind. You can't seem to get ahead, you feel like the world is crashing in around you. And you seem to be the only one holding it up with your small, weak TWO hands.
Being one of the "chronic/terminal" humans in life, can make life seem daunting. Not only am I struggling against everyday obstacles like everyone else, I also have the medical struggle for survival. So many times I wish I only had to see one doctor one time in one year. Can you spell relief? Ever wonder what heaven on earth would feel like. For me, read the above sentence again.
This is where I talk about support systems. I had a truly magnificent support system with all three of my organ transplants. In fact, if not for my parents and family I might not have seen the first one. With the loss of my Daddy this support system seemed to crumble. I've learned mentally to handle times on end in the hospital alone. This includes holidays, birthdays, etc. I thank God I love to read and create. That and wear holes in the carpet or tile from walking the wing so much. I am a survivor.
 We ALL need a champion pushing us on to newer heights and accomplishments. A sounding board. A confidante. That One True Friend. I've always been a loner, mainly because no one wants to see someone waste away and die on them. No ONE. Been there, experienced that, overcame the hurt and grew stronger.
Throughout my life I could always count my true friends on one hand. Most times on one finger. Anyone can have tons of friends or be popular. I'm referring to that One True Friend.
That special friend you seem to have an honest trust with. You can tell this friend anything, even your deepest darkest secrets and fears. You have such a strong trust and truthfulness between you, you know beyond a shadow of a doubt they will NOT betray that trust and tell. Nor will they ever leave your side, even if you inadvertently push them away. This friend is always there in the shadows, quietly waiting for when you need them.
This friendship should be cherished and honored for it is so rare to find. There will be times of hurt, but this friendship will endure even when you think it will not. This is the support system we all need. It is equal on both sides.
I have had this one true friend only once in my life. I miss our talks. Our debates. Mostly I miss someone who will listen to all my fears about my health and still be my champion. Someone who was there all the time no matter what.
Now however it is my time to quietly wait in the shadows until I am needed. Whenever that may be. Dear friend, I am here.

Prograf vs Cyclosporine both a necessary evil

     I was fondly remembering by experiences with both Prograf and Cyclosporine. In 1991 for my 1st transplant,lung transplant recipients were not given Prograf. Only kidney and liver reccipients and a few hearts.  My Cyclosporine was a liquid dose that had to be mixed with a liquid. NOT water, the taste was horrendous.
    Driving from Pittsburgh to Jacksonville, Fl provided a few laughs along the way. I wanted to see life again-not fly- so we drove.  I had a Hickman IV because I was in a study (yes the importance of reseach) regarding Gancyclovir vs Acyclovir. I would give myself an IV for 90 days. Stopping at  restaurant was the first of my revelations. I asked for a small glass (shot size) of either milk or juice. The look on the waitress's face was incredulous. Why would anyone want a small shot glass of milk or juice? When she brought it, the other patrons stared at me in horror as they watched me draw up a syringe of liquid from a bottle, put it in with the milk, stir it up and at the speed of light drink it. Looking at my parents I remember laughing and saying "What do they think I am, a drug addict? As if I'd do all this in public if I was." If they only knew how horrible Cyclosporine tasted...
      At the hotel we had to change the dressing on my IV site. Upon leaving in the morning I again laughed realizing the maid would probably think whoever left this room was probably suffering from a gun shot would. We did leave alot of bloody gauze bandages behind in the trash. Put that with all the unit dose empty packs of meds, and I just know she knew it was a drug bust gone bad. Since this I've often wondered how others viewd the life of a transplant recipient.
     Cyclosporine also had one rule. Do not take it straight. I found out why. I was at work and realized someone had taken my bottle of juice from the fridge for themselves. CARDINAL RULE : LEAVE ANOTHER PERSONS JUICE ALONE! You never know what they might need it for. My only option was to shoot it straight from th syringe. I counted to 10, held my breathe and pushed the plunger.
OMG!!! YUCK!!!  Now I know why we're told to take it with other fluids. To this day it boggles my mind trying to figure out why they cannot make these meds taste better. they've been around forever.
      I was told I couldn't have Prograf when I later asked because switching might cause cancer. Geez I was immunosuppressed anyway don't I still this chance? Yep, only mine has been pre-skin cancer. It was during chrinic rejection when I again asked this same question. After 30 days in Pittsburgh for thymo treatments I was told I was being put on Prograf. I asked, "but can't  this cause cancer?" This time i was told yes, but at this point you're dying anyway" Well, I guess they're right on that one. Chronic rejection is a royal pain. Been there, done that, don't wanna again.
    so now I'm on Prograf which helps  control chronic rejection better than the cyclo. Lung transplant wise. Kidney transplant would rather put me back on the Cyclo. Thank you Dr. Baz.
      Cyclosporine now comes in capsule form. One very large horse pill and one very small shetlad pony pill, 100mg and 25mg.
So if your dosage is 175mg you end up taking 4 pills. I remember I was told at one time that the pills smelled like horse sweat.
To which I sweetly replied, "How do  you know what horse sweat smells like?" At last they didn't taste like it.Not that I'd know. 
  Prograf is the same. 1mg or 5mg, so I now take 3 tiny capsules twice a day. Amazing,Cyclosporine was 175mg twice a day and Prograf is 3mg twice a day. Wow those tiny little capsules pack one heckuva punch.