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 !
   

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  :)

Listen to those "bad vibes"

    My bad feeling about Larry leaving for work came true.. And darned if I wasn't reading a book about just that- trusting in those little vibes you get.
After a high temperature (100.6) on Tuesday I was told to  be in clinic on Wednesday and to bring a bag "just in case" . Well we recipients know what that means.. Your happy butt will be admitted and you get 3 square meals ( if you could call it that) you don't have to prepare.  I woke up at 3:30AM and hit the road. My first appointment was at 8:00 for an x-ray. Then the fun began:  6 minute walk, pulmonary function tests ( that wreaked havoc on my lungs with this cough), Dr Baz and then the news- I was to get a port for IV Cefipime. Everything is showing normal so all they can figure is the Pseudomonas is trying to return with a vengeance. Though in thinking about this, I remember Pseudomonas as leaving one with the taste  of grapes in their mouth. This tastes nothing like that ! trust me


 Finally a port ! It has taken me 10 years to convince Dr Baz a port is better than a picc line any day!  Which also means no more 8 hour round trips to Shands for a picc line insertion. So it is then 11:00 and I think lunch since it could be 3-4 hours before they get to me.. WRONG~! nothing to eat or drink- gee thanks..  And he hands me a prescription for Oxycodone for pain. I thought you said this wouldn't hurt? Oh no more than your pacemaker did... Well that hurt like hell buster!  

  So I check in and decide to get the prescription filled so I don't have to on my way home. I give them my cell number only to discover  I'm on the last bar and in the red ! great and 4 hours to drive home!  I got out to 8 voice mails and cringed. Plug the phone in to charge, find a parking lot and clear them all.  I sat in a McDonalds parking lot in the rain on the phone- starving.

I got a picc line again...   :(  I have to be fever free for 24 hours to get a port -plus someone needs to druve me home after anesthesia.. Anesthesia? you call fentanyl and versed anesthesia ? I call those bronch happy  drugs.. I drive home after bronchs all the time. Well, they don't know that .. So it is a picc line.  and it itches like a MADMAN !

 So I now get Cefipime twice a day via IV and will start Colistin on Monday- inhaled 30 days on and 30 days off.. This is to be used as a preventative to keep "whatever" at bay.  I am too exhausted and tired to even consider what this will do to the part D  "black hole" I am about to sink into.. I only know if you hear a loud scream in a few months you'll know I got blind sighted with the bills.

Since Colistin is not an approved Medicare drug, I shudder to think of its cost.  But I'm in this for the long haul, and if I can't hit the ground running each morning, I'll just be thankful I can wake up and hit the ground at all.

On a more serious note, my temperature elevated to 101.6 on Thursday night. I figure after the picc insertion,  4 hour drive through thunderstorms, and getting home at 9PM- what body wouldn't rebel.  Shands thought differently and wanted me to drive back to be admitted. I simply did not have it in me.  I pleaded for 2 Tylenol and to sleep. Yes we must get permission to take Tylenol when running a temperature.   They let me !  I woke at 7AM, completely out of character for me and felt like I had just slept the sleep of the dead!  Never have I slept that much or that soundly!

I'm still running a slight temp (shhh don;t tell anyone ), the nebulizer has been delivered, and on June 22nd I will once again make that drive to Shands. The picc line will be removed and a port inserted.  I will be in continual healing mode this summer  :) But I will be here for the summer (and beyond)  THAT is the key.;

Time for an IV!!!