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.


   

Dilemmas and Bucket Loads

       Many of us feel overwhelmed in our daily lives at one point or another. I am no different. I've been facing a small dilemma of whether to blog about  issues I'm facing or keep quiet.  On one hand, if I blog I hope it does not change the mind of someone who is awaiting that precious Gift Of Life- an organ transplant. However. on the other hand it just may strike a chord  in someone facing a similar issue and help them feel they are not alone.

      I've been a little absent not only here but also on my FaceBook fan page, mainly due to the fact that my energy level for quite some time has seemed non-existent.  Of course, I did have to treat the lower left corner of my lip for pre- skin cancer, which in itself was no fun. A person never truly realizes how much actually touches your lips until it burns at the point of contact.. Oh and brushing your  teeth- well that was a major feat of gymnastics!. I'm an avid brusher, so I decided to bite the bullet and deal with the pain until I could get the toothpaste washed off.

  On a good note, I am still off Insulin.. YAY!!! My blood sugars are in range and I've even had a few lows. My HgbA1c  was 5.3 at my last visit so the endocrinologist is ecstatic. Why I stressed over telling him I was off insulin amazes me.

 I have however been having alot of pain. At first this was attributed to muscle and joint pain-but we now suspect that my Thyroid may have something to do with it also. I felt extremely stylish with an ace bandage wrapped around my ankle for 4 days! They found my thyroid to be enlarged and with cysts all over it via a sonogram. After the official reading we'll make a game plan. Adding to that, me the person who greets each day with a devilish grin and "hits the ground running" has lost her "get up and go" . Oh,I still greet each day with a devilish grin, but the energy level seems to be on vacation. This is completely not my style, so I am conducting an extensive search to find which tropical island my energy fairy has gone to. No more Pina coladas on the beach- honey time to come home!

    And this week has brought on a new development.  Remember how good it feels to stretch when you wake up?  Oh..me to...  Since Monday each morning I stretch it triggers my a-fib rapid heart rate.. No fun and it totally ruins that wonderful stretchy feeling.. I'm now taking extra meds for this-lucky me.. Just more to add to those little boxes to remind myself. I promised my cardiologist I'd call him if these "episodes" became more frequent than say.. 1-2 times a month. Think this falls into that category? I've had ablation for one form now I guess my heart is lonely and making itself known..

     I also know that these transplants won't last forever-but- this is not that time- trust me.  ( evil grin)

The heart will have its way...

     I realized that I forgot to update my blog as to my heart rate issue and the heart monitor.
Well to  make a long story short I went to the Cardiologist, he wasn't there, so I asked the pacemaker nurse
why I needed a heart monitor since I had a pacemaker recording every beat my heart makes?
The response I received was that a heart monitor records everything in real time.. Doesn't the pacemaker?
Well, yes. I then asked that since this only happens about once a month, and I just had my monthly occurrence what would the monitor record?  Nothing was the answer.. So she ran a copy of my pacemaker and I came home.
   Wednesday morning I received a phone call from the office and the doctor wanted me to come in earlier and speak with him...  Uh oh..in trouble now...:(
     I recently went to the doctor and we had a nice chat about my options. I now have Atrial Fibrilation where I had a type of Ventricular Tachycardia before. The ablation worked last time because it is not as invasive and difficult as the a-fib.. Lucky me again.. I had the option of taking meds as needed when the A-fib started like I was doing, taking a daily med to keep my heart calm (yeah right), or trying for ablation.
since ablation for A-Fib is more difficult and does not work as often I'm not ready for this right yet.
     I've chosen to take Multaq at a half dose to keep my heart calm and prevent the A-Fib from happening.
I wanted to do something because the longer a person stays in A-fib the more likely they are to have a blood clot or a stroke. Count  me out on this score. I have enough to deal with, without dealing with this too.
Feeling a thousand butterflies beating to get out of my chest is bad enough, but to worry about blood pooling in my heart and a stroke... Not this girl..
    Sometimes I truly wonder if I would have been better off receiveing a heart and double lung transplant like I was originally listed to receive.. I am positive my doctors (all of them) will have reasons to veto this train of thought.