Finally Free !

I am finally back to a normal heart rhythm ! It only took 2 CardioVersions and 2 hospital stays, but hey whatever works right?

The last 6 months have been the worst, to say the least.
September was the start of the A-Fib and multiple testing for a Watchman, only to be told I was a perfect candidate, but the Board chose not to give me one. I was referred to Mt. Sinai in New York, but the Electrophysiologist office neglected to send the records.  I discovered this in January. Unbelievably I am still waiting to hear from them. I chose to contact Shands Cardiovascular since they are only 4 hours away in Gainesville, FL. They visited me while I was hospitalized in February and did another TEE as well as a CardioVersion. I had a wonderfully normal heart rate for all of one night. The pharmacy didn't send up the meds to help it stay that way, and you guessed it I coughed the next morning... Back in A-Fib.

Another admission was scheduled for March. I was put on Sotalol for 5 doses with an EKG 2 hours after each one. Yes even at 2AM  ... grrr.. This was to make certain there were no prolonged QT waves in my heart, which could eventually be fatal. I then got another Cardioversion and have been normal (well for me) ever since.

In all this time, I lost My Boy Ozzi. Two days before my birthday. My 26 year lung transplant anniversary breezed by in a cloud along with my birthday. I'm still not ready to write about how much I miss my fella. He was my heart, my soul, and my inspiration to keep going. We were a team.
As the days went by, I recognized the need for a reason to wake up every day. Larry was away working and this house was too empty.

A friend knew I was looking - slowly- for a furry, wet nosed companion and recommended us to someone she knew. Nelson flew (literally) into our lives. I will admit 16 years out of the puppy stage, and this fella has been a joy to behold. He is into everything, explores the world via his nose and mouth ! The first commands he learned were "drop it" & "leave it".

He isn't Ozzi. Nothing will ever take his place in my heart. Nelson is pushing hard though. He's loving, tenacious, and stubborn all at the same time.

He's earned the nicknames wiggle butt, waddle butt, & low rider. He is a Skye Terrier and I honestly never thought to own another. They are difficult to come by. Owning a Skye Terrier was on my Bucket List, though I did have an Oath with Ozzi, & he promised me he'd live forever.

Now, to the latest dilemma, health wise. All these shocks to my heart plus a dermatologist visit triggered a case of Shingles. Oh yay !  Well, it also triggered what is known as Grovers Disease. Never heard of it ? You don't want to. It makes Shingles feel like a picnic in the park. Little bumps all over your torso front & back that will drive you mad with itching. I tried 2 Benadryl, Hydrocortisone cream, SSD cream & finally resorted to soaking it all with alcohol and then applying baby powder.
The Dermatologist called in a big tub of cream to help out with it all. She did offer something to help me sleep. I declined.. after all what's better than getting up every 20-30 minutes wanting to rip your skin off by scratching? It seems to be helping, but from what I read this could last up to 12 months. Seriously ?!?  It's caused by Stress, Sweat, Sun & Heat.. Great for us Southerners. 

Honestly, if this lasts 12 months- the stress of wanting it gone will guarantee it stays for another 12.

At least I no longer feel intense pain when a soft T-shirt rubs my stomach.. 

Have a great day !! Oh ! and don't stress too much- we might end up Grovers buddies  😎😎

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.


   

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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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?

The Early Bird

Remember hearing that from your parents ?
"The early bird gets the worm." We heard it regularly while Mom was bravely attempting to get us up for school. Or her gentle reminders to not be late.

I'm changing the saying just a little today. The early bird gets sleepy too fast.

My nightly ritual lately is:
All quiet until I lay down for the night.  Then as if by magical hour,  the cough finds its way home.  Not the chronic rejection cough, the thyroid pressing on the trachea cough. The cough that repeats over and over, "I'm gonna make you wish you could breathe and make me stop, but you can't".

Last night it started early. I was sitting in the recliner,  and Wham! I finally got things relatively calm but noticed it had triggered A-Fib. This was about 8PM.  Gotta love the feel when your heart jumps from 52 beats per minute to 118. I mean all those darned butterflies are flapping their wings in complete unison trying to break out of my chest.


I gave my heart the allotted time to correct itself,  to no avail and got my Metoprolol. Now I admit, I detest taking this and resist at all cost. It slows me way down, makes me dizzy and nauseous.
 Hoping to sleep the effects off, I went o bed.

Yes my old friend the cough came too. When it finally calmed to let me sleep, my kidneys decided they wanted the night shift. I was up every hour...grrrrrrr

 I finally waved a white flag of surrender and got up at 3:30. My heart rate is down, but not where it should be. Anothe dose of Metoprolol might do it, but not until later.  12 hours per dose,  would be 9AM.  But I have a 9:30 Doctor appointment for suture removal and since the medicine causes dizziness as well as nauseau, I think it best to wait. No, I do not want to have a stroke!  Trust me, if it gets worse, they can remove the sutures at the hospital.

Dilemmas and chaos are a part of everyday life,  just once I wish it were something other than medical chaos. But then agsin without all this my life just might be utterly dull. :-)

So here I sit, propped on the couch, resting for a bit. Maybe the Powers that be will favor me with a nap ;-)

Hearts-broken and otherwise

    Well this afternoon I get to wear a 24hour heart monitor. Yay :-(
This seems to be the thousandth time I've gotten one of these jewels and to date have shown nothing to be concerned about.  I do have a fast heart rate at times. I mean who wouldn't after open heart surgery and a double lung transplant, a single left lung transplant, a kidney transplant, and a pacemaker implant. Oh and please take into consideration all those meds we love to take. Originally in 1991 after my first transplant I did have to take time and recover from the heart surgery. I had an atrial septal defect which had to be closed surgically at the same time as my lung transplant to be effective. I took Procardia for 6 months and then all was fine for quite a few years.
    Then came time for the 2nd lung transplant and all the meds to curtail the chronic rejection. I was also very close to renal failure at the time. All this combined  with the fact I was getting progressively weaker by the minute and wasting away wreaked havoc on my poor tired heart. I was once again placed on meds to control and slow my heart rate. Well, after the kidney transplant it was felt I didn't need to take the meds anymore so they were slowly weaned off. It took all of 6 months to prove how I needed them.
   Being diabetic the first time my heart truly raced I was unsure if it was my blood sugar dropping or something else. I attritbute it to low blood sugar since I had the cold clammy sweat on the back of my neck, the horrible almost nauseaus feel in the pit of my stomeach, etc. We were at a Harley Davidson shop after enjoying a much needed bike ride. All at once I got these feelings and they were not abating. Seeing a small vending area with a few tables, I made a beeline for the coke machine and a table. I drank the coke and it didn't really help too much. By this time I was literally sweating bullets. I used evey napkin the little metal holder had on  my table and then another table too. I was speechless at the amount of sweating since I rarely sweat. I was also sitting directly in front of the AC vent. Well, another coke later and a hot dog, I began to feel better, not like myself but better. So with that off we went on the bike and home. I never truly attributed this to my heart rate. Just a freak blood sugar occurrence. I now know better.
   The next time was more vocal. I got up in the middle of the night to use the bathroom. I did as normal, walked into the bath, sat down, and promplty woke up on the floor. Not usual. We finally caught the culprit. Dr. Baz immediately set me up with Cardiology to find the reason . What they found was when my heart rate rose if they pressed on my neck it would slow down to normal. Well since I can't walk around with my hand on my neck except maybe in a vampire movie, we made arrangements for ablation.  This ablation was for Ventricular tachycardia. It was for the lower chambers of my heart. Before this I also received a pacemaker, another story altogether, believe me.
      After the ablation all was perfect. That is up until now. Now it appears my issue is with the Atrium, thus A-fib. I've been told this is more difficult to control with ablation, wow lucky me. Anyway as the story goes, last Thursday I was getting out of the recliner and my heart rate jumped from 51 beats per minute to 101. This may not seem like much to you but those darned butterflies that got trapped in my chest were beating like crazy to get out. Not to mention the slight nausea I had too. I immediately took one of my Metoprolol PRN tablets. I continued with preparing dinner, sweeping, etc. hoping my heart rate would slow down. Well it didn't. I decided to take another tablet before I went to bed around 10:00PM. I got a little sleep and woke in the middle of the night not wanting to get up. My heart rate felt slower and I didn't want to do anything to push it into hyper drive. I could feel it rise, then slow, rise, then slow as if it were trying to correct itself. I got up, took another tablet, checked the blood sugar-low again, ate some yogurt and settled into the recliner for a few hours. Friday morning it was at 85 but holding steady. I called the doctor and he decided on the heart monitor. After taking another tablet I am happy to say I've been at 51-55 heart beats per minute ever since. But I did have to take it easy for all of Friday. If this keeps happening it will seriously impede my exercise routine. After all, I'm scared to death to hop on the treadmill when I'm almost at target heart rate without trying!
      Since this only happens about once a month I'm having trouble understanding why I need the monitor. I have a Pacemaker and it should show everything. At least I know it does when the nurse does a printout every 6 months. Why couldn't I just go into the office on Friday and them run a strip? I mean let's be serious if I only have this once a month, I've already had my turn, what's the monitor gonna show?  I guess all this stems from the fact I really dread getting this darned thing. I'm allowed this feeling after all these years... Geez, I've earned it right... Oh well, resigned to the fact... Off I go to get wired...
BTW... As I told a good friend when we talked about this yesterday... This is NOT cunducive to a night of great sex nor will it make me feel that way either:-)