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

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!!!

"STOP the world I want off ! "

     Have you ever had one of those days where you want to throw your hands up and just scream.. Stop the world I want off.. Or for you Trekkies -Beam me up Scotty!

  I seem to be having a year of those days.. Now this is not the rants and raves of a silly LOL (little old lady), I too have those times when I feel overwhelmed with health issues and trepidation of what is to come.
My year started with the Retinal Occlusion and the news that my vision would never return to normal in my left eye. Then on to my little boy (DB) and his heart lung issues and fearing I was losing him a few weeks ago.
     For those of you reading my blog for the first time DB is one of my furry wet-nosed four legged boys. The alpha male of the household - yes all 10 pounds of him. And affectionately called Dibs since he is a smaller version of his 18 pound brother.
     Next was a clinic visit to Shands and the news that my lung function and kidney function were down. I knew I couldn't ride that "all healthy and good" gravy train forever, but both?? The clinic visited resulted in a return trip for a bronchoscopy and cleaning all that "gunk" out of my lungs. To date nothing has grown in the samples,  to my dismay. My cough left for a few weeks and just when I thought it safe to breathe again -Wham ! it returned with a vengeance.  I mean drinking a bottle of water really fast and hanging over the porcelain throne to bring it all up. Daily... You see all that "gunk" likes to stick around and try to take up residence in my lungs- resulting in a high temperature and Levacquin for 5 days. Which is where I stand now. One more day left !
I have yet to decided which taste is worse: Prednisone sticking to the roof of your mouth , requiring  that appendage with all those taste buds to jar it loose- or that metallic taste from Levacquin that NOTHING will remove. That plus the insomnia might put good ole Lev right on top.
    For the last 3 weeks I've had dizziness for no apparent reason. I mean if I'm gonna lie down and the room spin- why can't I have the alcohol to make it worthwhile right?? It doesn't seem to happen when I bend down like "normal" folks- but after my walks - note to self- grabbing a palm frond to steady yourself is about as good  as holding a flag pole in a thunderstorm.Now comes a 30-day event monitor.. Great ! I have negative feelings regarding heart monitors- stemming from a bad experience years ago. Plus with this happening daily should my Dr. really want me to wait and then wait again for it to be sent away for reading??
     Most of this stems from the fact we were just told my husband is leaving Friday for an extended stay in New England for work.. Yes I am strong! Yes I can be fearless! But I'd be lying if I didn't admit that being alone with this heart issue is scary.

Please don't get me wrong. I am not angry. I am frustrated. A good phrase is Sick & tired of being sick & tired.  I'm also concerned that this may be that time where I once again have to suck it up and realize I'm on borrowed time. But honestly, I'd rather not face that news alone.

Cinco De Mayo

     To many of you Cinco de Mayo refers to the Commemoration of the Mexican Army's 1862 victory over the French in the Battle of Puebla in the Franco-Mexican War.


     To me it does too, however I have a huge celebration as well. On this day in 2005 (yes o5-05-05) I received my third chance at a new life. I received a kidney transplant. 


     I am to this day amazed at how little we think of our kidneys, and how they bring everything into working order  in these complex machines we call our bodies. I knew I was anemic and had high blood pressure because of the the insufficiency of my kidneys. But to see the day after transplant my blood pressure reading drop to a whopping 95/64 with no meds from barely controlled 120/92 (on a good day) while taking 2 different medications is phenomenal.. I mean how can this small organ, smaller than my fist accomplish such a huge feat?


     I still have my 3 page list of foods I had to avoid. No they were not the fast foods we hear about today. These were ones I loved: bananas, oranges, broccoli, dairy, etc. I used to  joke that anything that was naturally good and colorful was b-a-d for me. I held out to the very last with my Diet Coke. Can't have caramel colored soft drinks either, too much phosphorus. I only drank them when I had an upset stomach. That too was nixed in the end.


     I no longer have my "Popeye" arm, where the fistula was placed. It was removed exactly 5 years to the day after it was put in. It had formed a clot due to non-use. I smiled to think non-use. Wow, first time I could actually say I had a surgical procedure done as a pre-cautionary  that was exactly that! Now all that remains is a long scar from under my arm-pit to just below my wrist. A reminder to take care of that lone kidney I received from Suzie my sweet donor. And the wonderful Donor Dad who agreed to let me receive it.


Today is melancholy and yet happy. Today is my celebration, while  Donor Dad is remembering his little girl he lost on May 3, 2005 her birthday. You too can honor my donor Suzie, please visit my page  and see her picture and read a little about her too. We have alot of similarities in our lives.


Are you an Organ Donor ? The life you could save might be one you love.. ♥


Recycle yourself.. Become an Organ and Tissue Donor 

Another Day At The Office

I've been noticing this grey spot right in the center of my vision in my left eye. I didn't think much about it since my eye Dr. mentioned I had floaters.  I knew when my atrial fib was acting up sometimes the vision in that eye got a sort of aura when I tried to look at things.

Well since it's been annoying me for a week, I went back to the Dr today.. And received not so good news.
It seems I have a Retinal Occlusion in that eye. So he checked the carotid arteries in my neck and all appeared normal. so he's guessing a possible blood clot broke loose and invariably settled in my eye.

Great... but just another medical issue to add to my "Medical Resume"  The good thing is that I can still see peripherally which means my eye is getting oxygen -just not enough at the moment. There is this annoying oval/egg shape dark spot direct center of my eye. Which may or may  not go away..

No, I'm not happy about it. But after all I've been through this is just another day at the office.. Tomorrow will be busier I'm sure once we get the Retinal specialist, my cardiologist and Shands in the picture.

Now to warn a few Dr's what to expect tomorrow!!