Tuesday, August 9, 2016

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.

Wednesday, May 4, 2016

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

Tuesday, March 1, 2016

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 ..


Tuesday, September 1, 2015

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 !

Wednesday, July 29, 2015

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.

Thursday, July 23, 2015

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.


Sunday, July 19, 2015

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?