Don't Let Wellness Get in the Way

The transplant process is a double edged sword. Each side has its protocol to provide the best opportunity for success. Each case is unique and there are no guarantees or absolutes but these guidelines are based on past experiences. On the front side of transplant, one should stay as healthy as possible and follow all the directions regarding meds, diet and appointments provided by the transplant team.

On the post side of transplant there is a much different group of meds and a whole new protocol. Your opportunity to recover is very realistic, no matter how impossible it may seem. Even though there are new "issues" to deal with, such as diabetes, insulin, odd side effects, changes in long practiced habits like Caffeine, or even favorite foods. As you continue to "stay within the lines" with the visits, meds, exercise and diet, you will notice things getting better and easier. The word normal starts to show itself in the distance but it is spelled differently or in a new font. This will become the "New Normal" .


Maintaining your new reality and health is a new challenge that will require consistent adherence to change. That may sound like an oxymoron, but it is a good way of describing it. As you get further from the transplant date things will be changing. With your new organ functioning properly your meds may be reduced, some side effects will subside, you begin to feel better, appointments become less frequent and meds are reduced. This is, by no means, the time to relax any of the needed routines that remain. There are meds you will be on for the rest of your life and taking them exactly as prescribed is as important on day 4000 as it was on day 4 post transplant. The same goes for the dietary and exercise regimens. You need to maintain vigilance to continue to enjoy the second chance you have been granted. Never become complacent with your success.

Be good to each other,
Tin Man

Kuala Lumpur?

Whilst whiling away the hours in my forced sedation, the city of Kuala Lumpur kept coming up in my dreams. To answer the obvious, I have never been there or even to that hemisphere yet the city was prominent and recurring in my dreams.

After waking I asked my wife a few questions about what was "real" and what was not. Questions like "are we in Kuala Lumpur?", "did I get arrested in Kuala Lumpur for running stolen boats?" Was I at a rehab facility in Kuala Lumpur where I wass recouping from my injuries?" "Why was I in Kuala Lumpur with family members and what were they eating on the beach?" Was I stuck in an Italian restaurant in , you guessed it, Kuala Lumpur, waiting for the owners to finish up their wine ????"""

All of this was dream but I did not understand the reason for the common thread of Kuala Lumpur. When I was finally moved to the tele floor, I recognized my nurse's name since she had been my nurse on previous occasions. My wife happened to ask her where she was from since her name was so unusual. Hold onto your hat…. She grew up in Malaysia, where one would find Kuala Lumpur. I got a chill that lasted the next couple days….

Be good to each other,
JJ

And there was much rejoicing…..

In my last entry I had just received the call notifying me that a match had been found for my needed heart. Well, suffice to say, things went well and I am now the recipient of the greatest gift. A second chance.. The surgeries went off like clock work and I was placed in a state of sedation for some 14 days to keep me safe from myself. My family made trip after trip to see me awake but most of them still did not get to.

I wanted to take this opportunity to thank everyone for their thoughts, prayers and well wishes. It is thru your strength and support that any of this is possible.

I especially want to thank my family members for the support they provided my wife and the great attitude that carried them all thru this.


Finally, I would like to thank the donor, whomever you are. None of this happens if that person does not live in charity and as a registered donor. I have truly been blessed with a miracle.


Be good to each other,
JJ

The Call

A little over an hour ago I was informed that the heart I have been waiting over 3 years for has finally been found. Dreams do come true and prayers do work. I hope to be up and blogging more info with a new heart very soon.
Be good to each other,
JJ

And you thought the dentist sucked

As I sit here in my hospital bed for the 8th day in a row and the 17th of the last 20 days I dream of being in the dentist chair having a root canal. It would be so much nicer than the interminable minutes spent in this bed working desperately hard to make it seem OK. Each morning I wake up and feel a little worse than the previous morning. I spend the first 40 minutes or so trying to mentally prepare myself for the 12 to 14 hours that follow. I need to convince myself that sitting in this bed and possibly walking a few laps of the ward will be less tiring , more comfortable or somehow more exciting than it was yesterday. I am trapped in a failing body and have to try to quell the urge to rip out the tubes or just try to sleep the time away. At times it seems that there is nothing outside of my room and the clicking of the machine that pumps my medication in and the alarms of the machines that monitor me. The cocktail is becoming too potent and my 40 minutes begins to stretch into hours. The process is beginning to remind me of one of my favorite Metallica songs. It is about a war veteran who suffers in silence within his own mind as he lays in a hospital bed with no way to communicate his suffering or horror of feeling trapped. I am not quite that bad but the image does enter my head.
As I write this and the medications start to take effect, my mood calms and I can see light at the end of the tunnel again. Hope springs eternal so never give up!
Be good to each other,
JJ

I'm Fine...

There are several answers that one may give to the question "how are you feeling/doing?". Swimmingly, fabulous, any better and I would be writing show tunes, logi, good and fine are amongst the possible responses. Each have their own charm and dispense with the question efficiently but one stands out in raising the hair on the neck of a caregiver or concerned individual. FINE!! It is, after all, a four letter word. It has been brought to my attention as a patient waiting for a heart transplant, this is probably not the correct response to a spouse/Dr/nurse/health care assistant/coordinator or social worker asking the question, especially if it is not true. George Carlin did a bit about the word fine that still rings in my ears. "a comb is fine, a line is fine, but people are not fine!!" he would shout in his gravelly voice.
During this journey, as the baselines are erased and lowered as quickly as they can be drawn, I have redefined "fine" several times and now have reached a point of confusion.

How am I really doing?

I have just spent a few days in the hospital in response to worsening symptoms of heart failure. I was started and sent home on a continuous IV of a medication that will help my heart beat stronger while the wait continues. This medication has several side effects and can be a panacea or a poison. It has caused me to become very aware of "how I am feeling" at all times. The symptoms have become mixed between side-effect and symptom. Add anxiety to the mix and I have real trouble with that question. I guess the best I can do for now is repeat what my father has said hundreds of times in response to that question.

"I got out of bed this morning"

Be good to each other,

JJ

Kindness Matters!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

WTF?

I was raised to exist in a world where people are people and monsters were myth. Where neighbors were like family and family was (and still is) the strongest bond. Where doing your job was important and above and beyond was the norm. Fair was more than a term in baseball, rules were NOT meant to be broken, charity was in the hearts of all and we helped one another because we should. I know, I was sheltered and privileged and was protected from the evils of the real world, right? WRONG! It is not a given that politicians must lie, cheat and steal their way to the grave. It is NOT only cheating if you get caught. It is NOT a foul only if it causes harm and doing the right thing is STILL the right thing to do. Apathy has led us to this place of fence-building, dog-eat-dog, outta my way and kill or be killed. We have the power to make a change. I am not suggesting that we can cure all ills of society today or even next week but the direction needs to change. NOT MY PROBLEM was a catch-phrase in the late '70s, not a new way to live. If you pull away from the picture far enough, you will see that we are all together in this. Let's start a good virus, one that spreads more rapidly than swine flu and lasts much longer. A "disease" that we all should be infected with. The symptoms are generosity, empathy, courtesy and kindness. That doesn't mean take care of others before yourself but remember others are there. You are not the only one driving, shopping, looking for a parking place, working hard, paying taxes, raising children or donating your time just to name a few. We are in this together and we need to SEE each other. Don't take "it is what it is" for an answer!! Kindness matters!!! Help that neighbor with their garbage cans, help the woman in front of you at Starbucks as she struggles with 3 cups, a briefcase and the newspaper and do it because you can, not because they can do something for you in return. The gift is in the giving. I know-the world is too far gone, people are too litigious, you'll be labeled a masher and that woman in front of you is a jerk, right? Well we are only here by our own actions or inactions and we can only get out the same way. Plant a seed of kindness and help the world grow.

Be good to each other!! (or so help me...)

JJ