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