Let's talk Steroid Induced Diabetes

 First off... This is just my opinion and how I changed it.

In 1999 and 2000, I was battling chronic rejection of my double lung transplant. Back then we got hit hard and fast with steroids and changed from Cyclosporine to Prograf to help control it.  All this caused me to be diagnosed with steroid induced diabetes.

I was put on insulin and began checking my blood sugar 4 times a day. My Primary Care at the time sent me to a three day Diabetes Management class that was extermely informative. First, we discovered that the insulin I was on wasn't what I should be using. I had serious side effects and it was recommended that I make a change to long acting insulin. Once changed, no more side effects. I learned to combine meals for effective control, drink tons of water, exercise even if minimally.

Through all of this, I had lost down to 90 lbs, on oxygen, in a wheelchair after 30 days hospitalized in Pittsburgh for Thymoglobulin. I was fighting to get out of that wheelchair and walk ! I had to walk to stay listed for a second lung transplant. I also had to lift 80% of my body weight with my legs. Once I was able to lift 100 pounds, there was no turning back for me. The Doctor said I could ease off.. Nope. not me. I had room to gain weight and it not afffect me  :)  This was a bit further down the road.

In all of this came the Diabetes. I felt this was one thing about my health that I could control. Yes, there were times I wanted to scream. Times I wondered if I could eat anything, without causing my blood sugar to rise. My blood sugar was so high at time of diagnosis that my vision was blurred. It had to be controlled quick. I was also so thin, there was no place the needle, no matter how small a gauge did not hurt. I was covered in bruises just from this alone.

As I started testing, I began to see a pattern. Certain foods affected me more than others. I'd already given up sweets. I never truly cared for them much anyway. I only wanted something sweet at rare times. 
I was walking very slow.. A turtle could outrun me with ease. After each meal, I began taking a short walk around my apartment building. I had to use a cane because my legs weren't strong enough yet, and my breathing was labored.  This one short walk, got my blood moving and my sugar dropping ! Eureka... could this be all there is to it? Bolstered, I began to push for more walking.

I had also given up potatoes, rice, noodles, anything fried and (my nemesis) bread. I became a control freak ! I thought if I can control this, it's my responsibility, that is one less prescription I have to take ! After a few days I felt better physically. After a month I said goodbye to the cane !  And after 10 years of being insulin free with good blood sugar readings, it isn't checked anymore when I go into the hospital. This was major elation for me !  I proved to the medical field that we as recipients do not have to accept that diabetes will happen, but if it should happen we are more than able to control it without medicines. 

Now, I can eat what I want, though I combine my meals. If I have this at breakfast, I don't have that at dinner. Life is a series of give and take. And. I. Walk. everyday, twice a day if possible. 

That three day Diabetes Management class was the best class I was ever sent to. I learned and now practice so much from it.

Control what you can, give the rest to your Team.. and remember.. Water...Water...Water.. drink it like a fountain !

Once again... This is my experience only. If it helps you, that's great. If not, don't shoot the messenger, please.

Photo from a bracelet I have, and the poem The Dash.

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)

Lost In Life

 Wow! Has it been almost two years since my last post ?

I blink and life speeds by at the sound of light ! We can all attest that 2020 was pretty much a blur with a pandemic (darn Covid) and the ensuing panic. For Lung Transplant patients this has been more like another day at the office. We wear masks when in public,social distance and generally take it carefully 24/7.

I had four hospital admissions and five rounds of at home IV antibiotics from April through December. The Pseudomonas in my right lung was rearing its ugly head again, plus pneumonia taking up residence didn't help much either. The side effects of no appetite, no energy and the GI issues made life .... well to say the least.. it was interesting. 

Out of all that, I think the most unappealing was the way mask wearing was made political.  Wearing a mask is NOT political. We do it all our lives. Cancer patients undergoing chemotherapy do as well. So to hear others call me a sheep or tell me I'm wearing a face diaper is the height of ignorance. Remember the old saying. Never speak harshly of another unless you have walked a mile in his shoes. Well, it clearly applies here.

I digress. This blog post is about my push to regain the bit of health I can control. It has taken me three months to get back to where I was pre hospital admits.  My oxygen sats were dropping into the upper 80s. And my spiro was disappointing at best. I had almost convinced myself it truly was my time and I wasn't going to beat this again. 

I made an apppointment with my local Pulmonologist as Telehealth visits weren't working for me at this point. I was losing a pound every two days, getting weaker and the struggle to breathe, I hadn't experienced in decades. I. Was. Worried. My entire visit I wore a pulse Ox on my finger. She noticed right away that once I coughed and cleared my airways, my O2 sats skyrocketed to 97 ! I have been saying this for years. Clear my airways and esophagus and I can take control. A six minute walk was done. At two minutes my sats dropped to 86%. I put on oxygen and once again they went up.

I now have oxygen to sleep with at night. I breathe very shallowly when asleep,. Plus, I have a portable concentrator for outings just in case. The better I feel the less I need. So far, just sleeping with oxygen at night gives me the boost I need to make it through the day without additional oxygen.

So... now to the part that is up to me. And there is alwys a part that we must take in our health. The doctors and nurses can only take us so far.  I was walking around at a wishful 0.5 miles an hour for maybe  five minutes before I had to sit down. I didn't let it get me down. I did something, if only for five minutes. I kept telling myself, soon it will be more. My morning walks are now at 2.5-3 miles an hour continuous for 20-30 minutes plus I stay busy during the day, laundry, grilling and such. Even trmming shrubs ! 

Today, well my mind tried talking me out of that walk. Maybe take a short one it said. No I replied, I'll beat myself up all day if I do. But, you don't feel up to it my mind shot back. This played out in my head until I hit the  halfway point in my walk. At which point I told my mind to shut up,yes my sides ached from breathing, but I was doing this. 

My point is... It's mind over matter, but it doesn't always have to be. Even if you don't feel like that walk or whatever your facing, take that first step and try. Now, my day is brighter because I accomplished that one task my mind tried to defeat me on.

Have a wonderful day and enjoy the good things it has to offer.

Changing Outlook

     Today, driving home from yet another doctors appointment, I thought about my outlook on my life.  Many of you know, I choose to not always "update" or post about what my daily life is about on Social Media.   This is a conscious choice.
In the last 5 years, I've been more instrospective and not having anything to say on certain topics.  I realized that hearing my lung transplant team tell me there was nothing more they could do for me (5 years now), hit me mentally harder than I thought. Yes, I'm determined to prove them wrong, but it does take a toll on one hearing that kind of news.  A person never gets used to it.

     Why post about my daily struggles ? Because no one really needs any more to bring them down. Many choose to allow too much negativity in their daily lives already.
I see no need to be Social about my pain, and anything else that goes along with my many surgeries.
I would rather bear this Cross I've been handed with dignity, and allow you my friends to lift me emotionally throughout the day. That is what friends do, right ?

Plus my Momma always said, if you have nothing nice to say...... in the days of social media- keep scrolling. 

     I find that instead of letting my life get me down, I try to find joy in the simple things- EVERY day.
While I was waiting for my 2nd lung transplant & on oxygen (again), my day started with sitting outside on the step, with a cup of coffee welcoming the sunrise. I could have hit FaceBook with "I didn't sleep again !" or "I'm so tired and exhausted "  instead I find that positive ray of sunshine to brighten my day.

When Nelson drops his tennis ball while I'm eating, I get up and play a few minutes of fetch. My food can wait. Time with Nelson cannot. He's happy, it warms my heart and makes me smile.

My morning is best spent sitting in a lounger outside watching him wait for squirrely or chase lizards.  The simple things can bring so much positive into our lives.

 A simple touch from Larry, or one of his practical jokes warms my heart. It means more than any store bought item he could ever give me. It reinforces our life together, & gives me that much needed boost to keep fighting.

Laughter and smiles- that's the key. So let's stop the name calling, finger pointing, and hatred- life can be negative enough, right?

Closing for the day- Nelson is unhappily on the couch alone & needs loving..

Finally Free !

I am finally back to a normal heart rhythm ! It only took 2 CardioVersions and 2 hospital stays, but hey whatever works right?

The last 6 months have been the worst, to say the least.
September was the start of the A-Fib and multiple testing for a Watchman, only to be told I was a perfect candidate, but the Board chose not to give me one. I was referred to Mt. Sinai in New York, but the Electrophysiologist office neglected to send the records.  I discovered this in January. Unbelievably I am still waiting to hear from them. I chose to contact Shands Cardiovascular since they are only 4 hours away in Gainesville, FL. They visited me while I was hospitalized in February and did another TEE as well as a CardioVersion. I had a wonderfully normal heart rate for all of one night. The pharmacy didn't send up the meds to help it stay that way, and you guessed it I coughed the next morning... Back in A-Fib.

Another admission was scheduled for March. I was put on Sotalol for 5 doses with an EKG 2 hours after each one. Yes even at 2AM  ... grrr.. This was to make certain there were no prolonged QT waves in my heart, which could eventually be fatal. I then got another Cardioversion and have been normal (well for me) ever since.

In all this time, I lost My Boy Ozzi. Two days before my birthday. My 26 year lung transplant anniversary breezed by in a cloud along with my birthday. I'm still not ready to write about how much I miss my fella. He was my heart, my soul, and my inspiration to keep going. We were a team.
As the days went by, I recognized the need for a reason to wake up every day. Larry was away working and this house was too empty.

A friend knew I was looking - slowly- for a furry, wet nosed companion and recommended us to someone she knew. Nelson flew (literally) into our lives. I will admit 16 years out of the puppy stage, and this fella has been a joy to behold. He is into everything, explores the world via his nose and mouth ! The first commands he learned were "drop it" & "leave it".

He isn't Ozzi. Nothing will ever take his place in my heart. Nelson is pushing hard though. He's loving, tenacious, and stubborn all at the same time.

He's earned the nicknames wiggle butt, waddle butt, & low rider. He is a Skye Terrier and I honestly never thought to own another. They are difficult to come by. Owning a Skye Terrier was on my Bucket List, though I did have an Oath with Ozzi, & he promised me he'd live forever.

Now, to the latest dilemma, health wise. All these shocks to my heart plus a dermatologist visit triggered a case of Shingles. Oh yay !  Well, it also triggered what is known as Grovers Disease. Never heard of it ? You don't want to. It makes Shingles feel like a picnic in the park. Little bumps all over your torso front & back that will drive you mad with itching. I tried 2 Benadryl, Hydrocortisone cream, SSD cream & finally resorted to soaking it all with alcohol and then applying baby powder.
The Dermatologist called in a big tub of cream to help out with it all. She did offer something to help me sleep. I declined.. after all what's better than getting up every 20-30 minutes wanting to rip your skin off by scratching? It seems to be helping, but from what I read this could last up to 12 months. Seriously ?!?  It's caused by Stress, Sweat, Sun & Heat.. Great for us Southerners. 

Honestly, if this lasts 12 months- the stress of wanting it gone will guarantee it stays for another 12.

At least I no longer feel intense pain when a soft T-shirt rubs my stomach.. 

Have a great day !! Oh ! and don't stress too much- we might end up Grovers buddies  😎😎

Chronic A-Fib Living with or Existing ?

     September 24,2017 I woke about 3AM with a choking cough, due to the chronic rejection. This time nothing would move. I honestly felt it was to be my last few breaths. I managed a slight intake of breath and blasted air out giving it my one last time.   Finally- relief, I could breathe. 

But, I triggered my A-fib.  And it has stayed with me ever since, like a long lost enemy.  Believe me when I say - it is NOT a long lost friend.

All the other "episodes" would correct themselves within a few days. The one previous to this, I went to my Cardiologist and received an IV until it corrected back to my normal heart rhythm.

     If you follow this blog, you may remember I cannot take any anti-coagulants due to hemorrhaging from my right lung in 2014. A very scary summer I have no desire to repeat anytime soon.
However, I am again taking a chance.  October 6,  still having an erratic heart rate, I visited my Cardiologist. We had to stop the Multaq, not recommended for long term A-Fib. This has given my heart free reign on being all over the spectrum as to rhythm.  Metoprolol went from 12.5mg to 75 mg twice a day, started Digoxin, and Xarelto. Yes, I asked for a blood thinner until we can at least try ablation or anything to keep me from a stroke. Imagine feeling great and so well managed on minimal doses to having Saurons army of Orcs pounding inside your chest wanting out.
We also discussed me getting the Watchman implanted in my left Atrial appendage. This would mean no more blood thinners !

     In the middle of all this, I had other appointments, and did battle with my lung transplant team. They did not want me taking Xarelto or having ANY devices implanted at this time. My cardiologist called on the 6th, left them a message and we waited. Monday, I called them and did the one thing I most regret. I told them I was doing as my Cardiologist recommended as I had heard nothing from them. This is the culmination of a few mistakes that I question them making in dealing with my health.  My Cardiologist again called and finally got a return call.   What ensued between my transplant center may have them kicking me out of the program. I.E.  calling in a Rx for Levacquin (I cannot take) and then calling another Rx into a mail order for 3 tablets of Levacquin. Why would anyone call in an antibiotic a patient needs NOW, to a mail order that will take 2 weeks to get to you? Three tablets ??? Seriously ?!?  My right lung would laugh hysterically at that paltry defense, break out the catapults and gloriously defeat such a minute attack ! They also called in Gabapentin, to help with my cough, which is getting beyond controllable even with Tussionex. I can count on one hand the number of good nights sleep I've had in 5 years..  Once I read the side effects, I said nope, nada, no way. I am disappointed enough in how this is being handled, I refuse to take anything that could enhance that feeling. So, I am dealing with the cough. As usual.

     The 16th was an appointment for a CTA of my heart to see if I can be a candidate for the Watchman. We failed. I was too nauseaus and the contrast (which I had to get permission for from my kidney transplant team) would make me sicker.. Oh yay ! We tried again yesterday, after 3 tries they could not get an IV catheter to go in far enough to inject the dye, plus my heart beat was all over the spectrum.. 19-150-68-120-52-49-113  yep that was me...  Now we will try again on the 27th at the hospital where they will access my port instead of a vein.

       I am concerned. The contrast could damage my transplanted kidney. To insert the watchman they will have to create a small puncture through the septum wall between the Atrium chambers. The same wall that was repaired 26 years ago to end my Primary Pulmonary Hypertension along with my bilateral lung transplant. The electrophysiologist promised to plug that hole really well... Hopefully I can also get ablation done to correct this darned A-Fib.  My shortness of breath has increased 3-fold. AFib causes it as well as my chronic rejection. I need this corrected so I can tell when my rejection gets worse.

     It is a lovely sunny Saturday, me & Ozzi are delivering goodies to a local pet rescue and then me, him & the Orcs will relax outside and try to read an uplifting book.

I.Am.Still.Here.
I.Am.Alive
I.Got.This.


   

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 .

Being Thankful

Never forget... Things could always be worse...
Be thankful... you woke up
Be thankful... You are Alive...

 Obstacles are just that.. A minor bump in your journey that makes you stronger.

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.

Treating the Whole Patient and Not Merely Organ Specific

     I'm not certain if anyone else has had this in their quest for better health. You have a Physician specializing in one specific organ, whether it be Cardiology, Dermatology, Endocrinology , etc. and they can only see and care for that particular part of you. This can be frustrating to say the least.
Or they get so focused on caring for that one part, they can't see what the treatment is actually doing to you, the patient.
     In a previous blog post, I mentioned that the Pseudomonas from my right lung is now in my left lung and slowly destroying it as well.  I normally do a Combivent nebulizer to open my airways so my Colisin antibiotic can get into the smaller airways to keep everything at bay. It has been well documented for decades, I am NOT an Albuterol candidate. The rapid cardiac response it causes is magnified in me.  Xopenex I can tolerate a bit better, but insurance (the bain of our existence) refuses to see when it can be beneficial for a patient. So a combination of Albuterol and another medication is used for this.
     After 3 weeks of living with A-fib, I thought the nausea, headache, worsening fatigue among other symptoms was a product of the increased dosage of the Multaq and Metoprolol. One has to admit raising a dosage from 12.5 mg twice a day to 50mg twice a day can be "depressing" literally. I was waking up at 5-6AM and going back for a nap around 11AM until 3PM No appetite and back in bed by 8PM. Clearly not the "I hit the ground running" gal I used to be.  So into the Cardiologist I went. I received an IV of Cardizem and within seconds of it starting, I could feel my heart & chest relax and begin to settle. Ahhhh the sensation....  I left the doctor with a happy heartbeat of 64 beats per minute. Still up for me but much better than the 124 I was carrying around.
    My Cardiologist mentioned that the Metoprolol would slow me down, but it shouldn't make me feel this bad.
     Later in the evening I got my nebulizer ready. Within 4 minutes of starting the Combivent my heart rate sky rocketed ! That rapid cardiac response Albuterol had re-triggered my A-Fib!  So I once again mentally prepared myself for the 50 mg of Metoprolol. Wednesday morning it was around 88 beats per minute. I left a message with my Cardiologist and went for my PCP appointment. Yep my life is one doctor after another :)   Thankfully my PCP is one who likes to unravel mysteries.. So we started Googling side effects for all my meds... This due to the fact that my blood levels were perfect. I do have Epstein Barr which causes Chronic Fatigue, but with the vitamin regimen I'm on, I shouldn't feel THIS bad.
    This search took a bit since I take so many meds. The one thing we discovered- all my worsening health issues were side effects of one medication.... The Colistin antibiotic I use as a nebulizer. I also discovered that not only can it help my lungs with the Pseudomonas, but it can also cause severe lung damage.. Talk about a double edge sword ! While I understand this is the one antibiotic my non-cystic fibrosis Bronchiectasis is sensitive to, I believe we should also watch the side effects.
     These side effects are to the point where I should own stock in Tylenol for the never-ending headaches, Fatigue- geez all I can do is sleep,  The worst taste in my mouth imaginable leading to no appetite, ringing in my ears enough to drive me insane, plus if not done just after the Combivent there are bronchospasms, shortness of breath (isn't that what we were trying to help?) and hoarseness.
Yesterday these side effects became so pronounced, nothing would help the headache. I had to force fluids, the taste was horrendous and nothing helped, I slept until 4PM made a nice dinner and was too tired to eat much. Then the nausea hit.. I sat on the bathtub for 30 minutes with a facecloth filled with ice on the back of my neck to prevent the inevitable.
     I finally had to break into those Oxycodone I swore to never touch in the hopes of headache relief. I hit my pillow at 8PM - even earlier than normal. I was so nauseous I did not do my nebulizer.  Instead of waking up at 4AM I drug myself out of bed at 7AM feeling a little better. I am hesitant to pick up my nebulizer. Yes I am a little short of breath, but nothing like yesterday. Yes, I know this is the only way to keep my left lung healthy. But can't there be a happy medium?
     Colistin is normally a 30 day on , 30 day off protocol. I was changed to everyday -twice a day and 150 mg each time. I was doing 75 mg twice a day and seemed to tolerate it much better.
I wonder if in the zealousness to stop the infection in my left lung I became toxic to the higher dose of Colistin?  My symptoms kept getting worse to the point I was worried this was the beginning of a rapid end.
     I will be having yet another conversation with my lung transplant doctor about caring for ALL of me, and not just parts.. I miss Dr. Baz... He looked at the entire patient and involved me in my care. With a heavy heart I wonder if I should seek out a new transplant center. After all I must do what I have to for my survival right?

Disclaimer: These are merely my experiences and thoughts throughout my 24 years of organ transplant life. I am not a negative person, but one who likes to search all sides.My posts are in no way meant to dissuade you from having an organ transplant. If given the chance, I would be 1st in line for another one....  Life is what we make it.. I choose to live mine feeling Blessed each and every second I am here- good bad or otherwise.
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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% ?

Ozzi's Grand Adventure - Cocoa Beach

Cocoa Beach is soooo dog friendly, we (Mommy & me) thinks it's awesome !

Yesterday I got to ride with everyone to Ron Jon Surf Shop. On the way we rode through the cruise terminals so the girls could see the big ships. .. wow ! A cruise would be so cool, but I think I'd miss rolling in the soft grass too much.

Mommy was walking me around while Dad & the girls shopped. Ron Jon is a nice place to walk. Lots of shady areas and tables. I drug mommy from door to door searching for Dad,when a nice lady who works there came out and told us they were dog friendly! !  Can you imagine ? A place this huge loves dogs ?? I did want to let her know I was not a dog-but mommy's boy- but mommy was soo happy I didn't want to ruin it.

Off we went inside.... it was overwhelming.
I had to see everything! Ohhhh and those stairs. . I had to show mommy & daddy I could climb them all! Dad had to take me though, the stairs caused mommy to have a ard time catching her breath. Once mommy took over, she let me walk everywhere.
Oh! And Customer Service even had a doggy treat for me. .. I wanna come back here.

Those stairs kept calling my name... they were so fun.. Mom & Dad took me on my 1st elevator ride there too...

Outside I got my picture taken with the girls. Aren't they the cutest beach bums ?

Oh and mommy too.

Then we were off to find lunch!  My head out the window,revelling in the "Peppermint Patty Sensation  " as mommy calls it. I know she really loves me when she has her window down for me. You see, she really needs the air conditioning to breathe easier. We chose Burger King, but took it back to the Motorhome because they had no outside seating.  Mom said if I can't eat with them,we don't need to be there.

Back home and she gave me half her burger. She shares all the time.

Next a nap with Mommy, a walk to the camp store for another treat, then dinner. Dad took us in the car so we could see the Disney Dream leaving. Mommy really misses when she used to work for Disney Cruise Line, and sailing.. she said it was so rewarding and relaxing. She loves making others happy. I'm so lucky it was her front door I was left at.

Tomorrow is the Ozzi & Mommy show ! We stay home and walk, cook pulled pork and maybe an ice cream sundae from the camp store ! Dad & the girls are gonna be astronauts,whatever that is. They better be home for dinner though !

Oz out fur now...
gotta keep walking... I promised Mom I'd live forever, (whispers ) and I'm gonna make sure she does too 🐶

The Grand Adventures of Oz.

Many of you already know Oz. For those who do not, Oz is the last of my 3 boys.
we lost Dibs in February 2 years ago, his brother CC in March of this year. Oz is our Skye Terrier who after being dropped off at my house at 8 weeks- rescued me.

After losing CC, a deal was made with Ozzi. He will be our only dog , as long as he promises to live forever :)

Since he is now 13 and greying, and I decided to start working on my Bucket List again. I thought , how about we check items off together !

Without further ado.... may I present Ozzi.

Oz here....
Mom & Dad are taking me everywhere ! Being the only dog has it's  advantages.  It was great having Dibs & CC around for fun and blaming each other when we dug up the yard... but like Mom says...
It's Good To Be The King!

We're off in the Motorhome, my first time without my brothers. We had mechanical issues -again- but no blown tires on the highway... yay ! We left the 1st campground in a hurry... yuck... but now are in a great place on a lake with lots of ducks!!!

Today was my 1st trip to a Flea Market. I walked with my tail high acting like I owned the place.  Mom kept telling me to slow down, but I wanted to sniff everything! I have to remember Mom can't catch her breath like when we walked 3-4 miles every morning. But this was her 1st trip to a place like this in a long time too.

Then we rode the highway looking for a place for lunch. Dad said it had to have outside seating so I could go to.. they love me soooo much. Yay for Firehouse  Subs!

Mom is always sharing her meals with me.  Don't tell Dad,but I take her to lunch when he's  working...lol. Back in the car and headed back to our motor home,I heard Mom say they wore me out !  I'm  gonna let Em think that until I get out of the car.
Tonight Gracie & Ashton will be flying in ! I really love the girls !

Tomorrow we drive out for a new grand adventure. ...

Ozzi out fur now ...

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 ;)