Struggles

 Everyone has obstacles in their life. For some, it's a  flat tire and late for work. For transplant recipients, it seems as though we are in a constant struggle to get healthy. We feel great. We get sick and have to start back at the beginning . Continually..

Immediately post transplant we want to go out and conquer the world. As years pass, our medicines take a toll and aging of our new organ creates some nasty side effects.

I'm at that cross roads. We're trying a new direction in treating my antibiotic resistant Pseudomonas.  I've stopped all nebulizer treatments.  Amikacin made it so I could barely get out of bed or make it through the day. Collistin tightened my airways so I could barely breathe.  I struggled with the known side effects of inhaled Tobramycin and lost. 

I now see a local Infectious Disease Specialist and Pulmonary physician. I was told the Tobramycin could cause hearing loss, what I was not told the loss is permanent.  Since it affects the inner ear, loss of balance is a huge problem. I was starting to notice that issue, as well as painful tinnitis.

Yesterdays walk was a little slower pace. Today was at a snails pace. Granted we had high humidity too. My low grade temperature is back which means it's time for IV antibiotics again. We're treating with antibiotics - only- right now.

Instead of letting all this get me down, I will keep trying that walk. Remember... accomplish one thing each day. If that's all you do, you accomplished that !  I Downed a few Tylenol and drank a little Root Beer to settle my stomach. Took a short nap and now feel ready to face the afternoon. 

This wee squirrel was my motivation on my walk.  He ran down the sidewalk right up to me before realizing I was real.  Looked twice and scampered off.  He gave me my morning laugh.

Find joy in each day.

Don't let negativity to rule you.

Take that walk. (Accomplish)

Comfort Zones

We all have them. Those places and people that we know we can trust with our lives. They know us there. They support us and often literally keep us alive.

This is extremely true for transplant recipients. Our Transplant Centers are our Comfort Zones. for many of us, this is where we found the physicians that have ever been able to answer our questions about our diagnosis.  I remember my first trip to University of Pittsburgh. I searched 28 years for answers to what my diagnosis actually was, and the cause.  Then as if by magic, I was overwhelmed with answers ! And the Coordinators- oh my ! if all health care staff could be just like them.  They were caring , positive, and so friendly.

Great flash back... and you know, even now at a different transplant center, this remains true.  We as patients literally put our lives and well being into their hands. No other doctors office runs like these do.  We talk to a live person, we get call backs, we get answers AND we do not have to wait 48 hours!  Many times I have said, "I wish all offices could be like my center."

I am currently in a concerning dilemma.
I sense the chronic rejection/infection from my right lung has sneakily taken up residence in my left lung.  Now this devious organ has tried this before, many times.  We try to catch it early and make it move back home.  Let me give you a little history here. The right lung is from a double lung transplant almost 26 years ago (I know, Yay me !) while the left lung was re-transplanted at Shands Hospital almost 15 years ago (again Go Me !!). I am known for doing all possible to stay away from hospital admissions.

Through the years my transplant coordinator has always known that if I call and say there is an issue, we jump right on it.  We've shared many hospital admissions that took me years to get my strength and endurance back, and neither of us want a repeat.  Bette, happy and medically managed healthy is a wondrous thing to be !

I've noticed my cough ( part of right lung chronic rejection, and as Heddi would say "A real Bugger") has gotten more prominent. Pain in my right side tells me it's on the move. Pain on my left side screams "Get it out !"  My cough can be loose (preferably) or tight to the point of choking me (not fun). When you are woken up at 3AM choking and cannot get air in to make ANYTHING move- it is NOT a good thing. Both sides ache from muscles being strained to unbelievable levels. Been there. done that. Sadly it will happen again many times in my life.  My friends know, my biggest fear is suffocating, alone and no help.

This is where I am now.  Plus temperatures off and on  for the last 3 weeks.  Now comes the inevitable, walking across the room and I am struggling to breathe. This is NOT the Bette, who was walking and climbing in Maine just a few months ago ! This is NOT the Bette I want to be !
I coughed/ choked so long and hard on Sunday morning I went into A-Fib- today is Tuesday and I am still trying to get my heart rate back to normal.  I will, if not my cardiologist will bring me in and there is an IV that works - just an annoyance is all.

Now the real concern... There is not one physician or coordinator who remembers my past history. They are all NEW !  I was called in a prescription for Levacquin, 1 tablet a day for 7 days. Ha ! I laughed hysterically.. I know it has to be knocked out and fast. This infection will shore up the tower, bring out the seige enginges and merely enjoy the little attack on it's defenses. Plus, I cannot take it. Levacquin causes a prolonged QT wave in your heart. I already have that, plus it does not play nice with my heart medication Multaq. I had open heart surgery with the double lung transplant instead of a heart transplant as well.

I called up Monday and asked if there was availability for a Wednesday visit.  They were full & overbooked. Now, under different circumstances, this infection would have been long moved back to it's home with me being treated like we normally do.  Heavy duty antibiotics called in & if I don't feel better within 14 days, a visit to start IV meds.  I have repeated my history multiple times. I wonder if they are tired of hearing  "This is what Dr. Baz always did for me and it worked ?"  Maybe I should change it to Dr. Baz, Dr. Akindipe & Dr. Salgado ? In my defense, my previous physicians proved to me time and time again- they would keep me alive.  Those transplant coordinators deserve a universe of praise as well ! I admit, when I'm sick, I want to get well NOW.  I had all these transplants to embrace life and this is merely an interference with me getting on with life.
I guess what I'm saying is, after trial and error we found what works for me. I don't really want to go through trial and error again. Is it too much to ask, to have a physician who KNOWS me and a coordinator as well.

During this phone call, I spoke with Rita the transplant assistant. When I mentioned coming up, her response was, "You're one of our strongest patients, when you call we know you are serious." My response: "I know! right! You're the only one there who remotely remembers my history."  I did get an appointment, with a promise that I will be given nothing unless in conjunction with my Cardiologist approval. As long as he knows, and we are proactive, I'm OK with it.

My suggestion for hiring coordinators. Let's not look at qualifications, but more at longevity. My coordinator in Pittsburgh is still there 26 years later. How comforting that is. My original coordinator  at Shands, I had for many years & was heartbroken to lose her as well as my physician (happily married with gorgeous kids), but there was a long period of transition to Sonja. Sonja was moved to pre-transplant after a few years and I got Chad who after 2 visits took a promotion and I got Sherrie. I just barely knew her and she left. After a few talks with Ashley-Marie my new coordinator, she is trying her best to know me and be my advocate. I only hope she stays for a long time.. The foundation of my comfort zone has shaken just like out recent Hurricane. This appointment will be stressful as I fight for what I know I need from years of experience, as well as try to not bring up physicians of the past.

Safe to say, I will get through this. I am not ready to check out yet, even with continual coughing for 5 years and lack of sleep from said coughing.. This is still my life and I intend to check out when I am ready. My goal to be back in Maine next summer and walking those inclines again !  Oh, and the lobster and Haddock are a great enticement too   :)

Be safe... Be a Donor.... Lives depend on you .

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 ..


   

And The Fun Continues

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

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

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

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

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

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

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

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

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

The Fun Begins Anew

      I have been off my nebulizer since Thursday night.  Per my Coordinator, stay off until we get a new plan together.  I will admit, each day has been glorious watching these symptoms slowly disappear. I have more energy than possible,  no headache, the horribly bad taste is gone,  nausea leaving, and my appetite has returned to the point I once again enjoy cooking !

      That is until last night. My cough is slowly returning.  It isn't serious, merely constantly annoying and has a mission to interrupt my sleep. I cleared my throat and coughed all night.
I suspected my feeling ill was lack of sleep, that is until my temperature started rising. It isn't super high, but is a definite marker of what is to come.

So, with shivering body, socks, heavy robe,  I'm huddled under many blankets, Ozzi at my side hopeful the TV will set up and I can watch my Amazon Prime movie,  Hercules. What better way to feel better !!!

All will be better soon, I have faith.

Is There Ever A Normal?

     In June when my husband looked at me and oh so seriously stated, "Well it is that time of year for you." I wanted to dig out my cast iron skillet and go "Southern" on that mans head. period. I believe my look, said it all though.

    True to form, I had an appointment with my Lung Transplant clinic on July1, and was promptly admitted. Though I still wonder why. Yes, I was coughing terribly. Yes,  my PFT's were down. But seriously folks, It's that time of year. I have always given myself IVs . I mean who has time to wait for a nurse twice a day? This is my life, and I choose to do them myself.

     One of the new Transplant Docs has a wonderful way of making his patients feel secure and safe. Just like Dr. Baz used to. I was feeling so horrible, I fell for it- hook, line and sinker. I agreed to be admitted, start antibiotics and have a bronchoscopy in the morning. I was put on the overflow wing the 8th floor. At first I was hesitant, until I realized these were all the nurses I had when on 11 in the old building ! It was like old home week, we talked, chatted and laughed- well until Dr. Salgado popped in and said I was being moved to 5. Deep depression sets in... My feeling of safeness slowly dissipates..  My nurse Eron, accessed my port and I did not even feel it! That is a huge Hooray for me.

    For those of you who have never had a port, it feels like a small nickel size circle under the skin on one side of your chest.  This is accessed with a special needle, and many make it feel like they are trying to pin you to the chair when inserting the needle.  It never comes out- so my other veins (which are non-existent) get saved.  The only down side is, when they change the needle there is no new place to go into. Yep, the needle goes into the same slightly sore spot your old needle just left.

   Needless to say, I was only in for one day. I could not wait to leave ! A letter to hospital Administration is in the works. This was the most traumatic experience I can remember. I was discharged with A-fib on July 2 and to this day still  have it. This may not seem like much to you, but I had been A-fib free for close to one year and we were decreasing my meds. The stress caused by 2 nurses on 5 started this.Suffice it to say, trauma nurses should not be lung transplant nurses. They should not be required to leave the room of a trauma patient and decompress to care for a transplant patient on the mend.

    Enough on that subject. The situation we have fought for 6 years has happened. The "pus" and infection from my right lung has now started settling in my left lung. They should have yanked that trouble causing PITA  when I asked years ago !  So now my natural progression will more than likely speed up. I have faced this before, and will again.. Only this time there will be no new transplant - the only light at the end of the tunnel will be final freedom of pain.

     So I came home with IV antibiotics, nebulizer again twice a day (which will be continuous) and alot of prayers. My IV was finished on Friday. Yay for a decent shower!  So now I am hopeful the A-fib will correct itself. I have gone from 12.5 mg of Metoprolol twice a day to 50mg twice a day.  I can barely stay awake as this slows not only my heart rate( which it hasn't as of yet) but the rest of my body as well. Naps are no longer around 1PM, but 11Am  lasting until about 5PM. So basically, I have no life except for auditioning for the role of Sleeping Beauty :)  This medication also creates nausea and what feels like an intestinal flu but is in reality a side effect. Yes, it is too high a dose for me. I guess the next option will be to shock my heart back into a normal rhythm... They better start convincing now for say 2017 right?

     I'm ever anxious to get my body and life back on track and start living again. No this is not a complaint, just stating a mere fact. I have a Bucket List to experience with Ozzi after all- who has recently had a tumor removed from his nose. We are quite a pair in our old age ain't we?

Managing My Time

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

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

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

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

Today we decided to try an experiment.

Only he was up earlier than I planned...

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

Hubby wanted lunch before he cleaned the cars...

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

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

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

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

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.

The Joys Of Using A Nebulizer

I've kept in the back of my mind that I need to blog...  But as always  LIFE gets in the way.

Today I wanted to add a little humor .. Only lung patients will understand the basis of my blog.
When we say we are nauseous from our nebulizer, many think reguar run of the mill nauseau.
Not a chance ! This is one of those "read between the lines" sort of thing. You know, something we just cannot explain, and others would never think it actually happens.

So without further delay, I give you my meaning of :

Nebulizer Nauseau

That undeniably nasty feeling one gets when doing a nebulizer treatment (breathing) to open up airways. Medicines such as Albuterol or Xopenex.

The entire body inside and out jitters so ferociously the stomach is thrown into an upheaval and hence- minor nauseau begins.


But oh my friends, it does not stop there...  Oh ! if ony life were so kind..

The first nebulizer treatment is followed by a second treatment. Usually an antibiotic or saline solution to "break up" mucous . Not just any mucous either.. This is thick, stick to your airways mucous. The kind that refuses to move, no matter how many times you chokingly cough, eyes water, etc.

This triggers a cough where all one can do is hang your head over a can and pray it happens fast !
Usually not the case..  You cough, and you cough, and you cough. This stuff is moving but even a tortoise could go faster. You feel it at the back of your tongue and wish- "Just move !" As it ever so slowly moves it's way out- it leaves that wonderful taste all over your taste buds.. This triggers more heaves.. Yep I never said it was easy.

At this point the jitters combined with the cough & horrid taste have made your stomach do a complete flip. It is now following the mucous on the way up..

You now have full blown
Nebulizer Nauseau
No cure, No relief (becasue you'll only cough more)

Oh! And keep that toothbrush handy... You'll wear those out in record time ;)

Updated, Decisions and A New Path in Life

I haven't posted much lately because I've been sick.
With the latest developments, I have promised a few very close friends I would let them all know what is happening.

I have bleeding internally since August 2013, we just had no idea from where. My hemoglobin and iron levels have dropped from 14 to barely 8.0. If you've ever had low iron, you know this is a serious drain on energy.

Since July I have had 3 major admissions into the hospital. But I want to give you a little background on me before I write it all here.
In 1991 I had a bi-lateral lung transplant with heart surgery.
In 2002 I had a single left lung transplant- which left the right lung from 1991 still in place.
In 2005 there was a kidney transplant, but I'll leave that in the past for now.. It's doing perfect.

     In June I had a bronchoscopy and they found infection. We've known for 5 years that my right lung was basically dead- but causing alot of trouble. I've done the rounds of IV antibiotics, and inhalants each time they arise.
    As June made it's way into July, I was NOT getting better, even with the antibiotics.
The beginning of July, one morning I woke up, went to the bathroom and could not get up. I had my head in the trash and hemorrhaging blood. The Doctors call in hemoptysis, I call it hemorrhaging when you can't pick your head up without coughing and bringing up uncontrollable bouts of blood.  Well, I finally made it to to put on a shirt so we could go to the ER only to spend another few minutes at the sink.. Then I found the kitchen trash can.. Larry handed me a plastic container and said use this, we gotta get help.  I will admit, I felt this was going to be my last day. As a lung transplant, my main fear is suffocating. Well I found a new way to scare me about my last day.. I could just see that one...
     I was admitted to Shands, my transplant center (4 hours away),, the longest drive of my life. I was put on Cefipime, an antibiotic that my infection was sensitive to and taken off Coumadin. I was feeling better but still had small bouts of coughing blood.  I came home...
     Six days later, I was once again admitted to Shands. The blood episode caused disseminated Shingles. The shingles were not in one area, but literally everywhere: scalp, ears, navel, stomach, chest, face, and back.Another round of IV meds began. This time strong Anti-virals. I will forever be on a does of anti-virals to keep it at bay, lung transplants cannot get the shingles vaccine because it is a live vaccine.After 9 days I once again came home, itchy but home.
     I was home all of one week and my temperature went to 101 and I started coughing blood again. Long drive to the hospital.. This time I was more prepared. My nightshirts and pajamas were all clean!
     After a lung scan, bronchoscopy, heart echo and heart cath, the results are:
The infection is chewing away at my right lung and when it finds a small blood vessel, it chews until I bleed. My teams main concern is, what will happen when it finds a major blood vessel. According to them, I won't make it to call for help. I have always been told the right lung cannot be removed. The left lung would increase in size to fill the empty space. Well, they found that it already has, because my right lung as it shrinks has adhered to my pulmonary artery, trachea and chest wall. So it has enlarged as much as it can, because the right lung has pulled everything over ( reminiscent of your spouse stealing all the blankets).
    My saving grace in all this is that my left lung is still functioning at 100% with a sat level of 97-100 !

Which brings me to my choices:
There are 2 types of lung recipients: those who are waiting for a 2nd chance,, and those who do not have one. While waiting for my 2nd lung transplant I jumped  through every hoop my team threw at me ! Now, I want to enjoy my life.
     I had chosen to be on minimal inhaled anti biotics to protect my left lung and live what life I have left. Painful but mine. This is opposed to feeling tied to a nebulizer for 12 treatments a day. I would never leave the table and feel I would die with regret that it was not my life. Basically be as comfortable as the pain will allow, but still die happy. This would allow me to start rebuilding my strength and endurance. They keep me one level and I take the bar higher. Dying with no regrets that I did NOT try everything I could to keep going.
     My last day my team came in and asked if I would consent to a heart cath. My surgeon, thought he might be able to remove my right lung and allow save my left lung. His basis of thought being that I have beaten all odds, 20+ years is something to be proud of. They told me whatever I was doing at home - keep doing it !
My heart cath showed my pressures in my heart lower than they thought. so now they meet next week and decide if it is worth the risk.

     Since the lung has adhered to my pulmonary artery, trachea and chest wall, the surgeon will have to literally peel it away. This will cause extra bleeding and a much longer, more difficult recovery. So it is something I have to think about as well.
  This is honestly the first surgery where I didn't jump up and say "Let's do this !"  There is alot to consider this time.. I am older, weaker at the moment, but I can remember a 90 lb weakling looking at my Momma asking "Do you think I'm up to this?" That was when I got the call for my 2nd lung transplant and I knew I had days left to live. But my left lung is the deciding factor.. I may get many more years if I try, but I may not..
     We all get to a point where being kept comfortable and free of pain sounds like the best plan. I am truly of tired of fighting. Fighting the pain that has gotten worse. Fighting the cough, from the right lung. Sleep deprivation. 4 pillows.  BUT I knew this could happen when I agreed 25 years ago to be listed ! Well, not the blood episodes. As a lung transplant, my biggest fear is dying of suffocation. I now have a bigger fear.

The weight loss has been an added plus. I am forcing myself to eat, I must. I have too much to live for to give up now.

This blog post was not written to garner sympathy. Please do not think me rude, but saying this. Sympathy keeps a person in those doldrum thoughts of Oh woe is me. That is not where I choose to be.  I believe if we cannot say something positive to lift someone up... keep quiet.  I rarely post on my FB page about my pain or issues for that reason. I am there to cheer my friends up and me in the process..

So either way I see this as a win situation... I can sit back, relax and enjoy what I have left or I can hopefully get surgery and have more time of planet earth.. Either way I am doing this my way.. I will have a LIFE not an existence.

   

One Year

12 Months
365 Days
8760 Hours
525,600 Minutes
31,536,000 Seconds

However you choose to look at i t, it's a long time..
February 10, 2013 I helped my lil guy cross over to no  more pain. And my pain was just beginning.
I know many would say, he is just a dog. To those I say you have no idea the depths of compassion a 10lb Toy Fox Terrier can have.
Not being one to support Pet stores in the mall, this is one time I did.  I saw this tiny lump shivering in a cage, from outside the store.He drew me in, and when I saw his face I knew I had to get him out of there !  His paws were so small he could barely walk in that horrible cage. When I held him (only 4 lbs) he curled up in my palm, laid his head on my shoulder and I was lost. He was covered in fleas, but I didn't care- he needed me (or I needed him). I took him home that day, gave him a bath and he had the shiniest white coat I have ever seen.  That first night, he slept curled in a tiny ball on my chest. I realize now, that is how he stole  hearts.  He may not have been a rescue, but he rescued me. I was facing a 2nd lung transplant, with little hope of it happening. Yet this tiny bundle of energy gave me the will to get up each morning, just to see what he would get into next.

His registered name is "Dragon Beast", his nicknames ranged from DB, Dibs, Dingbat, to lil buddy. He brought more chaos and more joy to my life than I could ever write here. In many ways he was like a child, he would keep trying until "no" became Oh go ahead ! Then he would run off with that little nub tail of his wagging in a circle faster than a wind mill. As a puppy he learned via hand signals. I was on oxygen and sometimes it was better to not talk. I'd point to the chair where his leash was, he'd jump up, get leashed and we'd take a short walk. Upon returning he would again jump up to have the leash removed.

As a puppy he loved to be on the back of chairs with his 2 front paws massaging your scalp. He'd pop his head around, look at you , disappear and start all over again. Ever the  one for attention, that's Dibs.
I once caught him and CC his brother in the back yard playing tug of war with a bra- they found it in the dirty clothes basket. I guess it was fair game!  He loved getting the others to play.... He became known as the Great Instigator ...

But I think his favorite of all was being close, hiding and warm.  He always wanted to be on a lap or held. When I had to sleep on an heating pad for my knees, he would crawl under the covers and fight me for it !

He always slept at the foot of the bed, under all the blankets,and I had to shake him awake like he was a child.. Sleepy droopy eyes finally waking up and looking at me as if to say "already?" That was my Dibs..

In his final  months he slept on a blanket at my feet under the ceiling fan. He was like me in that way, had to know air was moving to be able to sleep. That blanket is still in the same place to this day.. The only thing missing is my Dibs :(  I touch it every morning and tell him hello, and start my day without him.

Some may not understand the connection we have with our babies. For my part I can only say that being told I would never have children of my own, I hold my boys dear. He rode in a baby sling the last few years thanks to a wonderfully caring FaceBook Friend Jessica and adapted to it like a champ ! Many times on our walks he even fell asleep, snuggly warm, and the sun on his face.

He would let us know when to do things. Bed time meant quiet time. He'd pick out a toy, run to the bedroom, wait a few minutes and come back out.  Barely peaking around the kitchen cabinet as if playing hide and seek. Wide eyed, tail wagging, toy in mouth- signaling time to turn off the lights "I'm Tired"
On a visit to my Mom's one year he even came out with his bags packed on the day I was scheduled to leave as if he knew it was time !

We laughed until we cried at his antics that day !  Ever the showman, ever the attention hound..

That is my Dibs.... It hurts as much today as it did 365 horrible days ago... I miss you lil Buddy ♥

 He loved going camping !

 He loved hiding and staying warm!

 He loved being close !

 He never missed a surprise !

And he loved his toys.... 

The Early Bird

Remember hearing that from your parents ?
"The early bird gets the worm." We heard it regularly while Mom was bravely attempting to get us up for school. Or her gentle reminders to not be late.

I'm changing the saying just a little today. The early bird gets sleepy too fast.

My nightly ritual lately is:
All quiet until I lay down for the night.  Then as if by magical hour,  the cough finds its way home.  Not the chronic rejection cough, the thyroid pressing on the trachea cough. The cough that repeats over and over, "I'm gonna make you wish you could breathe and make me stop, but you can't".

Last night it started early. I was sitting in the recliner,  and Wham! I finally got things relatively calm but noticed it had triggered A-Fib. This was about 8PM.  Gotta love the feel when your heart jumps from 52 beats per minute to 118. I mean all those darned butterflies are flapping their wings in complete unison trying to break out of my chest.


I gave my heart the allotted time to correct itself,  to no avail and got my Metoprolol. Now I admit, I detest taking this and resist at all cost. It slows me way down, makes me dizzy and nauseous.
 Hoping to sleep the effects off, I went o bed.

Yes my old friend the cough came too. When it finally calmed to let me sleep, my kidneys decided they wanted the night shift. I was up every hour...grrrrrrr

 I finally waved a white flag of surrender and got up at 3:30. My heart rate is down, but not where it should be. Anothe dose of Metoprolol might do it, but not until later.  12 hours per dose,  would be 9AM.  But I have a 9:30 Doctor appointment for suture removal and since the medicine causes dizziness as well as nauseau, I think it best to wait. No, I do not want to have a stroke!  Trust me, if it gets worse, they can remove the sutures at the hospital.

Dilemmas and chaos are a part of everyday life,  just once I wish it were something other than medical chaos. But then agsin without all this my life just might be utterly dull. :-)

So here I sit, propped on the couch, resting for a bit. Maybe the Powers that be will favor me with a nap ;-)

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 !

Wishes And Blessings

     How many times have we all wished for something ordinary.
"I wish the dishes were done before I get home. "  Or "I wish for a bit of quiet" .  Now,  remember how great it was, when it actually happened ? The utter bliss if sinking into that steamy bubble bath, your favorite music and no one home to interrupt.

That is me this morning.

    As many of you know,  my cough keeps me awake both day and night so naps are rarely achieved with rest.  Couple that with 4 pillows in a vain effort to NOT cough, and deep, refreshing sleep is elusive.  Having a desire to sleep on your back is One thing,  being forced to is another.  Attempting to sleep sitting straight up one invariably awakens with the malady "tingly butt".

Among my simple wishes , topping the list are:
1.  A refreshing nights sleep with no cough.
2. The utter bliss of sleeping with one pillow.

I have many simple wishes,  but sleep has to top the list.  Sleep refreshes us in mind, body and spirit.

Last night for the first time in a few years, my 2 simple wishes came true!  Three pillows on the floor and my head on only one. And *insert drum roll* no cough ! I know it will rear its ugly self after I drink my coffee,  but I intend to wallow in my good fortune for as long as possible.  Oh! And I forgot the best part!  I got up at 5AM, went back to bed and unbelievably went back to sleep until 7A.M. this is amazing in my life.

I know this burst of energy will dissipate as the morning moves on, but it's so nice to wake up feeling rested and ready to tackle the world.   Finally... :-)


Have a refreshed day and don't take your simple pleasures for granted.   ♥

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.

Early Mornings

I remember my Parents alway saying "the early bird catches the worm "_ but they didn't get up repeatedly all night with a cough.

And here I sit my friends, awake and drinking coffee at 3:30 AM -coughing. In all fairness to my cough,  it woke me an hour ago, I merely tried to ignore it in the vain hope it would go away.

No such luck.

Those wonderful REM times when our bodies get rejuvenated from that deep sleep, not gonna happen. Not here, not now. Today will bea day of trudging in a zombie like state, feeding myself  fuel to keep going, until I can get home and collapse.

Now I'm not complaining !  I knew all this could happen 24 years ago, when discovering there was a chance I couls live longer.  I have endured worse, much worse. And if I am truthful I will 3ndure worse again, before this is all over.  So I am so very grateful that I am still here experiencing everything life has given me, plus all the Blessings yet to come.

And that is today's lesson..... be thankful for everything in your life. Good, bad, & other wise. Smile through the bad, laugh at the otherwise,  and truly enjoy the good. For therein lie the memories that will help you sail tthrough life :)

Back to my coffee, my book on the Civil War, and hopefully an early morning nap.

Havea wonderful day today -good, bad or otherwise,  it is YOUR. Day.

My New Life 10/23/1991

The rest of the story on that fateful night is:

My Air Ambulance arrived in Pittsburgh with a very worried Doctor onboard. The customs officials had taken so much of the precious time I needed to make my "transplant window", that we landed at the airport at the exact time I was supposed to be on the table -open - and ready for new lungs..
More delays  ....

I still hear the ambulance wail as we made our way to the hospital.

In the ER the Anesthesiologist and a Transplant Coordiantor were waiting for me.  I found out that the surgeons were "harvesting" the organs in another city. Yes, back then they used the term harvesting, I know it's different now. More politically correct, but this is my story and this is how it happened.
As I lay on the stretcher we chatted away about non-essential topics. We then went into telling jokes.
I spied the curtain moving, the Anesthesiologist changed facial expressions and looked down at me.
"Ready to go?"  Excitedly, "Is it a go?" "It's a go, they're on their way back" " Let's get this show on the road !"  "Well, you have to tell me the punch line before I can put you under ?"

And that is how I went into a life saving lung transplant.  Telling jokes..  If we cannot laugh through our troubles - we will cry hysterically until we destroy ourselves.

Many have been astonished that I did not ask for "Last Rites" just in case. Honestly, the thought never occured to  me. I'd had 18 months to  think, and get my life right with God. I felt this was all in His hands as he guided the surgeons, nurses and finally gave that torch to me. I thought and still do think, that I am in a win-win situation.. If I was allowed to live, I had more time with family, friends and making memories. If I did not live, I was going home, no more oxygen, struggling to breathe, fatigue, I would be whole again ! Who could argue with those odds?

The next thing I remember is waking up on October 25th.. and that is an adventure in itself...