The beat goes on!

Having so much fun here I've decided to stay a few more days. The good news continues- the first biopsy shows no rejection at all!

Dr Kumar did the cath and said,"the heart looks fantastic!" That's what I want to hear!!

Staying on to improve red count, balance anti-reject meds and fluids. There's a lot of complex chemistry.

I'll be here over the weekend and maybe as long as Thursday - the 2nd biopsy is Wednesday so they may just keep me till then.

Visitors are welcome. I'm feeling great and getting excellent care. The chaplain visits me and is a hoot, too! What a great servant of The Lord!

Kasey & Nelson came yesterday- they are so great together and Kasey is just precious, she's due to deliver their son, Alejandro, by the 14th! The first grand for both families.

Vickie and I get rounds of education on our "New Normal". It is a lot but they are great teachers so we'll be fine.

The profound take-away is that the old, diseased life is over and a new, healthy life has begun. I feel this heart beating so strong at night that I hear it move the pillow case beneath my neck.

The donor heart is chilled and implanted and then the bypass ends - when warm blood fills the heart it beats on its own! It beats because it must beat, it beats because it was created to beat and even has a brain of its own to make it beat!

I praise you because I am fearfully and wonderfully made;
your works are wonderful,
I know that full well. Ps 139:14 Praise You, O Great God of Glory!

Thanks for your cards, thoughts, love and prayers!

Home Friday is the plan!

Proved to be overly optimistic. I can be patient, it's been an eight-year run of heart failure and I'm in good hands. Need more time - balancing the really complex chemistry and heart rhythm. My spirit is high and I'm feeling good. 

Sunrise Davis Island Tampa

I got moved from the intensive care unit after midnight last night into the larger recovery room. All transplant patients on this floor, heart kidney and lung. The sun is beautiful rising in the clouds over downtown Tampa and Davis Island. I was able to lie back and feel the beating of my heart. Wow, is the only word!

Moving Day

Surgeon Dr. Farber the cardiac surgeon that I had not yet met (Calderia, Hooker) was by to tell me that they really like the way it's looking and are going to move me from ICU onto the treatment floor (Dr. Mackie has been caring for me here in ICU).

The new heart is beating strong normal and well. I can feel its beat! It is an amazing feeling!

Doing physical therapy - made a lap of the ward this morning. Getting stronger of course there's aways to go yet. Much more freedom up on the upper floor where the standard Transplant rooms are.

The rooms are single private rooms and they have a couch so it's easier to visit.

All functions have to be returned to normal before the let me out of here. But that's all going along great so the move is on.

I should be here for another two weeks so getting out of the noise and confusion and chaos of ICU is always great.

Getting all your messages about your prayers, thank you for all of your attention, all my love, John.

Selfies

Kasey and Nelson stopped by as did Banks and Lois. Vickie was here earlier to.

A selfie with all my tubes

Actually that's just the top half of the tubes

"Post" post - my new birthday

I didn't know whether to share this - but decided to and revised this post.  

Revised August 17, 2014:

My new birth date is July 23, 2014. That's what they say around here when you get a new heart.

I'm in ICU and have been since surgery, it's taken a while before I could write. Wow, had some crazy dreams, visions and hallucinations over the last two days. The great care staff, Vickie, Tom and Nancy kept guard over me and talked me through the worst of them - at 3:00 AM!. Reaction to the drugs I was told. I have experienced events that have changed me and how I will view the world. I have an understanding of mental illness - it was so real, but my mind was in paranoid overdrive. Nothing the staff hasn't dealt with before and was not ready for. I am thrilled and really drugged. Should be getting most of my tubes out today. I'll be in the hospital for 2 to 3 weeks. Thanks for all your prayers everything is going great right now.

Special thanks to Meghan (with apologies), and to Lori and Lorna, all of TGH ICU. Tom and Nancy picked up Vickie and they came to my aid at 3:00 in the morning! How can I say what good friends they are. God bless these, God bless us all. 

This was my original post:
My new birth date is July 23, 2014. That's what they say around here when you get a new heart.

I'm in ICU and have been since surgery, it's taken a while before I could write. I am thrilled and really drugged. Should be getting most of my tubes out today. I'll be in the hospital for 2 to 3 weeks. Thanks for all your prayers everything is going great right now.

Dr. Caldeira, transplant surgeon

Dr. Caldeira, transplant surgeon

My brother got this photo of Dr Caldeira when he came to give my family the good news that the heart looked perfect, the transplant went well and that I should recover shortly. 

It is kind of unusual but sometimes the last person you meet in the transplant process is the actual transplant surgeon. I was finally able to meet Dr. Caldeira at this afternoon. The surgeons take different weeks in rounds. Dr. Hooker is rounding this week so it was nice for Dr. Caldeira to stop by.

Still on track

Dr Caldeira
Transplant Surgeon

The donor organ continues to check out. Now transplant operation isa scheduled for late morning or early afternoon. I've been in a comfortable room on the post-transplant floor since 4:00 AM. This is a private room with a couch, recliner and chairs. Vickie can "stay over" with me, she is currently bedded down on the couch and I had a "chill pill". Nurses, docs and techs scurry in and out as we wait for news. In another room, somewhere else in the southeast US, another family is gathered. That family is dealing with a tragic event. The donor is brain-dead and they are in grief. 

My prayers are for comfort and healing in their loss of their, now brain-dead, loved one. I thank them for the gifts of life they are giving to me and others. Their doctors and councilors are with them and will be through this all. They will say their goodbyes and let him die, leave the hospital and began their lives as his survivors.  Remember them also in your prayers 

This type of "beating-heart" cadaver allows the heart to be transplanted without it being ischemic (without blood flow) for a long period of time. That is the best for the quality of the organ. The recovered heart will be chilled to about 45*F to preserve it and ready it for transplant. The "harvesters", a team of organ recovery specialists have come by jet or helicopter and will recover the solid organs - heart, lungs, kidneys and liver. That equates to up to right transplants from this donation. Eight lives will continue or be lived more fully from this one gift. The donor will have passed life on to us in these gifts.

The truth is that all of this is scary but I am comforted by your prayers and support.
--
Later

Surgery is still scheduled for today. The surgeons will have a visual on the donor organ around noon. If everything still checks out I should be in surgery between two and three. The transplant will take between three and four hours so I should be out of surgery between five and seven.

Once it begins I won't start remembering anything for a day or so due to the drugs. I will look and feel pretty bad at first. I'm being pre-medicated with powerful anti rejection, anti viral and anti bacterial drugs now. Some of them are messing with my thinking and are giving my a tremor. Typing this is getting harder so I'll put this down, now

Vickie will be able to see me  -  I'll be in ICU several days. Once the tubes come out I'll get to a regular room (two - three weeks).

Tom and Nancy will be with Vickie here at TGH for the surgery (thanks!)





JohnCorl@gmail.com

Transplant scheduled

The donor organ continues to check out. Now scheduled for late morning or early afternoon.

Obviously, this means that a family is dealing with a tragic event. The donor is brain-dead and they are in grief.

My prayers are for comfort and healing in their loss of their loved one. I thank them for the gifts of life they are giving to me and others.

Remember them also in your prayers.

This type of "beating-heart" cadaver allows the heart to be transplanted without it being ischemic (without blood flow). That is the best for the quality of the organ. Some organs are chilled and hours removed from graft but these still work.

The truth is that all of this is scary but I am comforted by your prayers and support.

"The Call" came at 2:20 am

I'm over at THG awaiting news as to whether the docs approve the donor organ. If it passes, I'll have a new heart today. If not, I'll be home later on.

Pray for us.

JohnCorl@gmail.com

Sooner, Not Later

Bi-weekly visit with Dr. Kumar, my transplant cardiologist at Tampa General, went well. Two rounds of blood work and an exam revealed that I was in high compliance with their requirements.  I got offered a heart from Orlando over the weekend but that organ wasn't up to TGH's standards and was declined. I don't hear about that at all - they will only call me if the organ passes their initial standards.  His belief is that my organ will come sooner, not later.

My transplant co-ordinator, RN Cindy, updates me on whats up during my regular visits and is real good with being available by phone or email if I have a question.  RNs Brad and Mark have fun and keep things lively. Brad compared himself to Kobe at the beginning and Mark to Jordan at the end of his career (Brad is the young, shaved-head nurse and Mark is that old guy who used to be good in his day.)

Having a regular day puts me in with other patients who are regulars as well, so we check up on each other, too.  It's a strange "club" to be a member of for all of us.  Some are in better shape than others but all are in good spirits. The wait room has both the lung and heart patients and some are dozing by the time they get called.  Most are in their 60's-70's but their are a few younger and older.

The regular visit is to review compliance, for Dr. K to listen to and re-evaluate me and update each other.  He is the manager in this process, both pre and post transplant but the surgeons actually will do the transplant.  I have not met any of them as yet.

US News 2014 hospital rankings are now out and TGH ranked very high - #2 in Florida (behind Orlando), tops in the area and #41 in the nation in cardiology and heart surgery.  They are good in many other categories as well but their food is still a horror parody. Order the turkey sandwich from the local "nutrition" stash! http://health.usnews.com/best-hospitals/area/fl/tampa-general-hospital-6391060

TGH ranks high among heart transplant facilities (fourth nationally) due to successfully moving patients from wait list to successful transplant with lower than expected mortality.  More successful outcomes is a VERY good thing!

I have the great, good fortune to be in this place at this time with these people. Yes, it is heartening (really?) to have a picky doctor choosing my new heart and our management allows that.  It's a team there and I have a great support team in my community, too as well as the prayers of the saints for healing. Bless you all!

Management

Does this guy look like any manager you ever saw? Yes? Ok, he's not my point but the water drops on the glass are.  In my prior post about water called Well Compensated I wrote about what heart failure does to my ability to keep my fluid balance.

I am in the time of management in the transplant process. Water management.  I had previously given up alcohol due to the meds but giving up water has been much tougher!  Yeah, give up water - think about it.

That slice of watermelon or yoghurt cup must be counted along with the coffee, tea or sips of anything because they are just, like, with you. You can't get rid of them because you don't work like people should.

Management means observation, control and reaction in this case. Watch the intake, watch the weight and react with controls (physical and pharmaceutical) before a crisis puts you in the hospital to be "dried out".  No one wants to be there if they can help it!

Nothing new about the transplant right now - I'm in the holding pattern. Could be today, next year or never.  I do know that, by the time folks do get the transplant that they are ready!  Some have to go through more degredation of their live than others and I am happy and thankful to not be on a VAD (artificial heart assist device) or stuck in the hospital as they are.

It's management but it's good, too.

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.