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 ..


   

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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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  :)

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 ;)

New Hardware

I wondered a few days ago just how much hardware a body can handle before the software  gives up.


This is a photo of my morning and evening routine:

On the left  you see the IV meds I take and on the right the 2 nebulizer treatments .

Now this may not seem like much to you, however upon waking my routine is weight (yuck), blood pressure, temperature, heart rate, pft's, and blood sugar and logging it all in on an Excel spreadsheet. Then 

Then round one of meds, breakfast, morning walk with boys, then round 2 of meds- then all the above before getting ready for work.

This is the picc line for the IV's  that I wrap after the treatment so it  isn't seen at work:

Yeah it hurt and itches like hell, but it's something I need for now. On Friday it comes out and I get a port in my upper right shoulder. Left is already full -a Pacemaker is strategically parked there. They told me the port would hurt about as much as the pacer being put in.. great.. SO that's why the Rx of Oxy..

Along with all this is the emotional  ( I dread to consider the financial) aspect too. That is the part not many see. I'm still remaining positive and refuse any negativity in my life.

And thanks to wonderful -fantabulous friends on FaceBook I'm making it with laughter!

This post was starting out vastly different, then I spoke to a few of those wonderful friends and they had me laughing like a banshee!  

Moral to the story:

The software can handle the hardware as long as it has wonderful caring friends and family.

Have you told your friends how special they are today??

Maybe you should