Three Offers

Visited the transplant clinic at TGH today for a routine checkup with my doc and blood work for Lifelink. News is that I have been "offered" three times so far.  I've been on the list for about two weeks now - since June 14.

What does this mean? I've had a chance at (been matched up with) three hearts. Two of these were out-of-region and were claimed in those regions and the third was rejected by TGH upon examination (improper match, out-of-time, too damaged or for any of a host of other reasons.)  It is good to know that TGH is very picky when it comes to my new heart!

I asked what the "norm" was on such news - this is about average for well qualified, active candidates I was told. This is good news because I am getting offers - so my profile is top tier in the UNOS system. My doctor is very confident that I will get a heart and that it may be sooner rather than later, but there is no way to know.

Other good news is that the interim treatment that I am on is highly effective. I was placed on continuous drug infusion about 7 weeks ago and that has provided good results - more stamina, better rest and a healthier appetite. The fluid management is always a challenge (see other blog - Well Compensated) and the increased appetite is messing with my weight-loss goals, too.

It's a difficult management task to deal with balancing these competing issues - the heart disease made me a new diabetic as well, so on top of the above, glucose must be monitored and managed through insulin, diet and exercise.  My doc is one of those despicable folks that has to work hard NOT to LOSE weight (grrrr!). He says that he realizes that this makes him irritating to his patients who are working hard on their goals so he doesn't give diet advice (tips, etc.) other than to just give the facts of how weight and BMI relate to transplant odds and survival.

OH, exercise! Yes, since the new drug treatment, I am able to get in some quality time on the elliptical machine. This is something I haven't been able to do for a year.  Still working out how much - 45 minutes and I'm pooped out for two days but 30 minutes, 3 or 4 times a week seems ok.  I do need to get in as much as I can tolerate so as to keep the rest of me in as good a condition as possible.

A new heart is a new life. That new life is a gift. That gift was given through great loss. I need to do what ever I can to honor these things!  Thanks for you continuing prayers - the time may be soon that I get "the call" and another "New Normal" begins.

Heading home (mobile post)

New line installed. TGH staff and docs are the best. Roommate is always interesting though.

Big city public hospital and my luck hasn't been good. Security had to come to remove this guy.

Elvira says, "we encounter some of these to learn patience - they are the sandpaper that takes away our rough edges!"

Always good to be on the outside of the glass. Woo-Hoo!

News - but not the heart (mobile post)

The port that I get my medication through broke this afternoon. I'm over at Tampa General ER.

They will get me hooked up again and sort the port tomorrow. Another lovely night here at TGH!

No News is Good News

Balancing all the areas of health, business and family as you all are. I've got a couple of new items in the health category that I'm learning and Vickie and I are expectant grandparents as well.  I've heard from a lot of you wanting to know, "how's it going?"

The answer is that it's hard work but manageable so far. I'd like to lose some weight but even with a very restricted diet that's not happening yet. I really can't explain this but I'll be seeing the Doc soon and that's a question to ask.  Similar diets in the past have cut 1-2 pounds per week so this is different.

I'd like to exercise more but can't get too aggressive or it puts me behind (no reserves - if I do too much, I pay for it over two days) so I'm working out but carefully and modestly. Maybe has something to do with the weight thing, too.

Good news is that I feel good most all the time (and folks say that I look good, too.)  I mean, with my normal activity I can cope and my color is good.  I am thankful that my docs have my meds pretty well balanced.  I am on rocket fuel and viagra after all!

No news on the transplant. I don't expect any until "the call" happens. That could be soon, not soon or never. Depends on many factors.

Folks say, "Gosh, you look so normal, it's hard to believe your heart is so sick." Yes, it's hard for me to believe sometimes as well - but other times it's not.  I follow all of you as you go about your work and play and miss many things that I used to do but no longer can.  I do enjoy hearing about your joys, triumphs, travels, activities, sports and adventures and I look forward to the day that many of these we will share together.

Being here in a vacation paradise - many of the activities I miss the most involve our beautiful water!

Money, Money, Money

Good News! We have great medical care, here. We all know that it is expensive and has to be paid for somehow. No one wants to be the source of the money (see Steve Pastis' Pearls Before Swine ).

I have said here that I have met people in this process that are from all economic levels and ethnic groups - I want to let you know that this is a level playing field as far as I can observe. I hear a lot of news and politics that seems to say otherwise and maybe it's "just better here" but my research and reading back up my experience.

This means that we all need to be careful when we hear those that point out our differences rather than our similarities. When it comes to the heart - we are all alike!

Lunch with Friends

Friends are great to have. Women do friends much better than men - men often lead solitary lives devoid of the close relationships women develop. Most guys say they really don't need these friends and not having them makes no difference.

Had two different lunch with friends opportunities this week. Tuesday with the church staff and interested others (mixed group of men and women). Wednesday with friend and support team member Tom and his wife (and support team member) Nancy's dad, Jerry, who lives with them.

Getting back to the point above, something Pastor John Fullerton (PJ) said on Tuesday fits with guys saying not having close friends doesn't make much difference was, "If you only, ever at at McDonald's, and you really liked McDonalds, but one day you ate a steak with all the trimmings at Ruth's Chris, your world would be changed!"

Meaning, to me, is that habit or routine is not bad but it leaves no room for finding better or the best. This time in my life is giving me the opportunity to break routine and it is bringing me closer to some really good friends.

Awesomness

Got to see a bunch of my friends today at church, and that is awesome, but the real "awesomeness" is that together we merge into worship together.  The "largeness" of worship - even in a small church comes from the presence of God's Holy Spirit and the physical and the spiritual transcend this place.

It is not possible for me to describe, words fail. I would just say, "Come. " Place yourself in the presence of God in worship. Find the congregation that makes worship meaningful to you and participate - this world is not enough.

St. Andrews Presbyterian Church
sapcd.org

Well Compensated

Smell the coffee. Well, the expresso in this case. It's all about the water, you know.

Yes, Vickie and I treated ourselves to an expresso machine for our anniversary but that was connected to the heart, too. Because it really is, all about the water.

Expresso is 1.4 ounces, Lungo expresso is 3 ounces a regular cup is 3.5 ounces and a mug is 6 or more ounces.  Can of soda or beer? 12 ounces.  Yoghurt cup? 3 ounces.  So what does it really matter at this point? ;-)

Water - 1500 milliliters per day (about 50 ounces).  The battle is with fluids - as the heart weakens you lose the battle with your own juices. That's called de-compensation (I never, ever expected to learn these things.)  Too much and you swell or can't breathe. So, a whole coffee experience in 1.4 ounces helps!

With care, education, medication and management I can be "well compensated" (Uh, thank you. Thank you very much! Yes I am, but how could you tell from over there?)

Thank You list

I have to begin this list with my wife, Vickie. That beautiful, Swedish girl that I met at the bank 34 years ago when she filled in for Stuart. Stuart was a great guy (and you could tell the day of the week by which suit he was wearing) but Vickie really caught my eye.  My dad and business partner looked over at me and said, "well, why don't you ask this pretty girl out to dinner?" IN FRONT OF us both! Dad was never bashful and he got the pretty girl and so did I!

Next up - the pastors and prayer warriors. John, Joy, Joy (not a typo), Suzanne, Bob, Cindy, Nancy (Carol), Tom, Jay, Mark, Ray, Mary Lou and you.

The gang who have listened to me vent - Jack, Kathy, Alex, Fay, Cindy, Mark, Brian and you.

The support team - Nancy, Tom, Jay, Mark and you.

The doctors - Patrick, Jon, John, Joshua, Siva, Jennifer, Munria and counting. I will be adding a transplant surgeon, too.

The nurses, coordinators, managers, researchers, technologists, assistants and special people who make thing work. Cindy, Brenda, Kristen, Melanie, Dianne, Erica, Blair, Sandra, Penny, Alicia, Mary Beth, Delores, Beverly, Susan, Khrista, Christie, Christine, Barbara, Gloria, Chris, Brenda, Kristen 2, Heather and a whole bunch more!

I'm going to hear from some for my lack of including them but I plan to add to this list - these are just the starting names.

The New Normal (Start Page)

I received a call today that I have been listed for a heart transplant.

The biggest of big deals - at any time now, the phone could ring and within a day the heart that I was born with will no longer beat inside my chest.  Instead the heart that was beating in another chest will take its place.

It is impossible to begin this journey without thanking a family who is in great pain for their choice to pass life along to others that they do not know. Through a tragic event that ended the life of their loved one others will have life or be able to enjoy life again.  Thank you and may my prayers for you ease your pain.  I promise to be worthy of your gift and to care for it.

The journey to this news began many years ago but only in the last year has heart failure really hit home.  My doctors have and are managing me expertly so many of you never realized how sick my heart is - I look and feel pretty darn normal.

Normal. That's a word.

How many "normals" have you had? Earliest memories as a toddler, pre-schooler? On to school, then high school, college, career, marriage, family, relocations, …, deaths, births, all require or make changes in our lives and we make a "new normal" for each.

Like passing through a gate to the lands beyond, we leave something behind a enter a new country where we set out to create a new normal pattern of life and activity.

I can't say what is in this new land that I will enter beyond this gate - I have hopes but will trust that God will continue with me as he has up till now and that good things will be ahead.

Vickie and I have spoken with others who have made this journey, our doctors and nurses and we read Dick Cheney and Johathan Reiner's book "Heart, An American Odyssey".  These gave us more confidence but we were pretty scared at the prospect.  Over time, through prayer and the prayers of others, we have been covered with peace.

Now, I'm certain that when that phone call comes we will be anxious in the moment but with His help, your help and your prayers we will be fine.