The Christmas Gift

Christmas has now come and gone and this is the first one post transplant. It has been a long road and I finally found out just how far. My wife and I were opening presents from family and friends when I came across a gift from my eldest sister. It was a tin man ornament. It looked sort of old and weathered which confused me at first. With this gift was a note which reads

"I made this ornament when my first born was a baby, so it's about 35 yrs old. Who'd have ever thought it would carry such significance in our family after all these years! It's so wonderful that your wish 'If I only had a heart' has finally come true, tho like the original tin man, we all know you have had the biggest heart - in your spirit and how you live your life. You, Baby Brother, will always be an inspiration to me."

After a short bout of tears, my wife and I looked at each other with the same expression on our faces. The look of understanding, just a bit better, than we had before. The second chance I have been granted is only worth what I make it. My transplant experience has been less than my favorite thus far and I have found myself on the pity train more than once. Support like this gives me the strength to work at my recovery and understanding that this gift has effected more than just me makes it all the more precious.

Be good to each other,
Tin Man

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

Nothing like a day @ the hospital to cheer you up!

This morning I woke up with a bad attitude and angry that I am getting sicker and there seems to be no end in sight. This has not been the first time I felt this and won't be the last. As I wallowed in my self pity and developed a sharp bit of anger I prepared for a day of adventure. I had to get to the hospital by 730 to start with a blood draw (7 vials). This was followed by a trip to the cath lab for a procedure I have been undergoing for quarterly for the past 3 years. I showed up with my traditional skull shoes that I have become semi-famous for. A tech comes out to get me and puts me in a holding room where a nurse wants me to change into a gown, lay down and prepare for an IV to be placed. None of this is part of my normal procedure. We argue for a while and I capitulate to the possible change in protocol. IV placement has become difficult for some reason and today was no exception. 1, 2, 3 strikes your in, imagine what this has done for my mood. I then return to the waiting room and try my darndest to not fall asleep. Eventually it is into the lab to get the procedure done. The normal preparation of the site etc and the stabbing begins. The challenge is to place a catheter in my jugular vein and snake it to my heart to get some readings. Knowing that the cardiac fellow performing the procedure has not seen me in quite some time, I remind him that the vein is distal to the entry site. He hears me say this from under a blue tent that has been created with the surgical drape. He must have thought I was talking in my sleep because he ignored that bit of advice and missed the vein. He trudged on with the catheter scraping the back of my collarbone as either a point of reference or just for fun. The attending Dr came in and looked at the screen and said flatly "take that out". He then proceeded to order some meds for my IV and fluids since I was dehydrated. He then finished the procedure himself without incident. I was terribly sleepy for some reason. I come to find out that they administered Versed during the procedure and I needed to be in a holding room for an hour to let it wear off. This too was out of the norm for my procedure but it did have a better effect on my mood. They fed me a box lunch while I waited and I tried desperately not to fall asleep with food in my mouth with itinerant success. Once released, we look for another good spot to wait for my next appointment in an hour or so.
Waiting and people watching had an additional calming effect. I was not nearly in the horrible mood I started in by the time we got to the clinic waiting room. The place is up for grabs and we find the only 2 seats available to wait. Unlike any other medical office, the appointment time comes and goes and there we sit. We is my wife and I. About 5 minutes after, a young lady comes out and calls "Jim?" Some 6'10" dude get s up and goes thru the door. More than 1 Jim I guess. About 15 minutes later another young lady comes out and calls "Jim?" I get up and go with her and get into the exam room where I see the name of a Dr I don not know. My wife asks the MA, "Who is Dr …?" The MA looks at the chart and asks "what is your last name?" Out to the waiting room again and yet another Jim joins the fray. 5 minutes pass and a confused 6'10" guy, followed by a blushing MA come back out. He was more than surprised when the topic of transplant came up as he was having his vitals taken since he was there for an echo. Long story short, they thought he was me. I finally get into the exam room (take 2) and wait for the Dr. my transplant coordinator comes in and is lambasted about the changed procedures from the mornings events. Stammering and blinking repeatedly, she tells us to ask the Dr when he comes in. No worries, will do. Dr comes in and we give him the business in a more lighthearted manner. He jokes with me for a bit and gets the exam done.
By the time we are out of that place it is 4pm and I have to stop on the way home to get a script for an injectable drug to bridge my blood thinner. Nothing like twice daily shots in the belly to cap the day off. We finally get home, I am very tired and have several holes healing up. Odd thing is, I am just fine. The mood and self pity are gone. I don't care how or why, I am just glad to be back.
Next week on the Greatest Gift, ICD surgery and a visit from Mom and Sis. I am looking forward to 2 out of those 3…
Be good to each other,
JJ

Keep Living!!!!!!!!!

I got a call from my brother the other night. He and his wife recently added a son to their family. They live in the Midwest and here I sit in Salt Lake awaiting my transplant. I am not allowed to travel as a result. To my surprise, my wife and I were asked to be the godparents for this newest addition. The first thought to cross my mind is that I cannot be there to attend the baptism because of this situation. I immediately counted myself out due to the limited travel and my physical condition. Was I ever wrong. My brother proceeded to tell me that they would come here to have the baptism. What a fantastic idea!! My wife and I are honored and so excited about the upcoming events.

This got me to thinking about the whole transplant process. I have been listed for almost 3 years now and have missed my share of functions and family gatherings, the birth of my new nephew among them. That does not mean I have to count myself out. I can still retain my relationships with out of town family and friends and share in their lives as well as start and foster new relationships along the way. This transplant journey may be a detour from my original path but it is NOT a stop sign unless I let it be. Keep Living!!!

Be good to each other.

JJ

Just a heart transplant

Good News!!!!!!!!!!!! The liver findings were excellent. The hepatologist has granted me a clean bill of health regarding my liver. No indications of portal hypertension or cardiac cirhosis. This IS great news for all concerned. My wife and I were discussing the meaning of these findings and a phrase caught my attention. "At least we just have a heart transplant to worry about." This is one of those sentences you would never have imagined hearing or saying, yet it was completely appropriate. Still it strikes me as funny and makes me think of contemporary paralels. At least we only got 41 inches of snow, at least gas prices have come down, at least I am not the only one who lost my retirement fund...add personal reference here...
Now we will go back to the original plan of replacing my defibrulator and adding a lead for atrial pacing. This should allow the Drs to increase my heart rate and hopefully increase my energy levels. We will probably get that scheduled before the end of April and I am hopeful that we are on a winning streak. More good news and a successful outcome will be welcome.
More to come...
Be good to each other,
JJ

Who ordered the liver?

Ok. Things are starting to "normalize" again, for my version of reality. I have been thru a couple wild weeks and there is no sign of stopping just yet.

I met with a hepatologist because of an enlarged liver caught on a CT scan. A few blood tests and an appointment that ends with me needing a new liver in addition to a heart due to portal hypertension and cardiac cirhosis is the result. Not what I was looking for. Based on exam etc and the preliminary diagnosis a liver biopsy is scheduled. The biopsy will be the gold standard of proof. The procedure is set to be performed trans-jugular with minimal sedation. The goal is to measure the pressures within the veins near and in the liver and to take some biopsy samples for pathology to examine.

Right after mybiopsy procedure was done, the team reported that they found no portal hypertension or irregular pressures in the veins. This is the finding we wanted and is as positive an outcome as we could ask for to this point. Now we wait for the good news to continue regarding the biopsy findings.

Should things fall my way, I will continue discussions about replacing my defibrulator with a more effective pacemaker. That would require a different surgery to place the new device and add an atrial lead into my heart. Wouldn't be fun without some more surgery.. Woo Hoo!!!

Bright side- the heart transplant team has changed the screening protocols to account for the potential cardiac cirhosis in patients with right heart failure including retroactive exams on patients currently in the program. This "second look" has already identified one patient who will benefit from the further scrutiny and will provide an opportunity that may have presented a huge obstacle in his treatment.

More to come!!

Be good to each other.

The Culprit

In all things, moderation...

I must report I spent a long and test-filled day in the Emergency Room on Monday. It all started Sunday, I was having alot of pain in the shoulders and chest and difficulty breathing. Having suffered the odd spontaneous collapsed lung in my past, everything pointed to that. I remembered that each time I had one of these, I did not get any treatment, like a chest tube, because it was less than 25% collapsed. I figured it would reinflate and the pain would go away if I let it. Wow, was I wrong!! I could not find a comfortable position in bed and slept only a couple hours Sunday nite. At 4, I gave up trying and decided to go out to the living room and sit up on the couch. The pain was less when I would be more upright. I had taken some non-aspirin for the pain and it did not touch it. When I leaned forward to pick up my soda and felt like I would pass out from the pain, I decided this was more serious than I thought. My wife had joined me in the living room and had that concerned look on her face. She suggested the ER and I said not yet. About 15 minutes later I gave in and said let's go.

Based on my symtoms and the fact that I am on the transplant list we started the battery of tests to make sure that this was not related to my cardiac condition. The bloodwork, Xrays, Ultrasound and EKG all proved that it was not. This is a good thing, or is it? The tests told me what it was not, but not what it was. It was suggested that it may be muscular or skelatal pain. The Drs asked if I had done anything unusual or recalled any possible injury over the past couple days. The only answer I had was that I had been working on a cross-stitch almost all my waking hours for the past 3 days. Now that seems somewhat remote, but I was in the same position using the same muscles and doing repetative movements for hours at a time. They also suggested that it could be a virus in the muscles or joints that may be causing the pain. I cling to the virus diagnosis with all I have to retain the slightest bit of dignity.

I left the hospital after 14 hours with 2 percocets in me, a perscrition for 20 more and the wry advice from my Dr not to cross stitch for a couple days. I have not, and the pain has gone away. So remember, my gentle reader, warm up before you start stitching and all things, in moderation. A couple comical thoughts come to mind in retrospect: How old do you feel when you have a cross-stitch related hospital visit? Is this cause for a new type of "fear of needles?" Are we going to need warning labels sewing needle packages? Do I have a legal case for damages? When is the insurance industry going to address the situation?

Enough fun for now..
Keep smiling and be good to each other!!

Mental Feng shui and the blessing of distraction

I talked a little about how the reality of the situation caused some emotional struggles and required what I like to call mental feng shui. The three days spent mouth agape allowed me to reorganize the situation internally and "normalize" it. There have been more than 1 such opportunity along the journey so far. The original news was just the first in a series of such moments in my personal journey. For me, time passed as my condition remained stable and no progress was made for a while and the reality wore off.

I started a regimen of travel every 3 months from Boise to Salt Lake for appointments and the reality of the situation began to fade. As the frequency changed to monthly travels I knew we were making progress. The discussion of relocation started to take place with the transplant team each trip. We began to prepare as we could by collecting data on places to live, how to deal with work, what is the tax ramifications and what to do about our cats. This was a nice distraction to dwelling on the fact that this was going to be a huge life-change for myself and my family, plus the cats. It was also a diversion from my condition. My condition has and will continue to diminish as time passes but it is so gradual that it almost goes unnoticed. The distractions mollify the 800 pound gorilla in the room and allowed me to continue to do the things I need to do to continue this journey.

Each month's visit ended with the same question and the same breathless apprehension of the answer to come. "Do we need to move?" Finally the answer was yes and that was the the second time it became real. At this point I just wanted to take my ball and go home. This isn't fun anymore! This called for another feng shui session. Once I regained my composure and the glaze was gone from my eyes, the serious planning for the move was the next blessed distraction. With tons to do and arrange I was able to divert my attention for a while again.

More to come...

The journey...

From start to finish, the transplant process is an emotional journey for patients and care givers alike. For me the journey started almost 3 years ago and continues as I write this. On June 13, 2006 I was officially placed on the UNOS transplant list as a potential heart recipient. At the time, I lived in Boise Idaho and was 40 yrs into a congenital heart disease called tetrology of Fallot. I had always had a "bad heart" so the possibility of reaching this point was there all along. It just never seemed like reality to me. On June 13th 2006 it became reality. Honestly, I had a rough time getting my head wrapped around the idea. I went to work othe next day and let my staff know and informed them that I would be taking some time off. I went home and spent the next 3 days in my living room staring at nothing with my mouth open. Once I came to terms with my situation I was able to get back to life as I knew it. Back to work and starting a new regimen of appointments with the transplant team in Salt Lake City, Utah. The fist couple weeks we were on pins and needles and every time my cell rang, we thought it was "the call". To make it a bit more interesting, I had a job that was 24 hour on-call and my cell was also my work phone. After a little while it became less likely that it was "the call" and things settled back to relative normalcy.
I was classified a status 2. This means that my condition was not an emergent situation and I was in "good health" for the relative group I had just joined. I was starting a relationship with the transplant team who would be part of my life for the next x amount of time. The average waiting period for a status 2 patient is 1 yr so the call could come today, tomorrow or whenever. There is no certainty, only hunches and past data to base decisions on, and of course, my health. Any drastic change would change my status.
More to this story coming soon...but now is time for sleep.
JJ