Thursday, July 31, 2014

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!

Tuesday, July 29, 2014

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. 

Monday, July 28, 2014

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!

Sunday, July 27, 2014

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.

Saturday, July 26, 2014

Selfies

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

Friday, July 25, 2014

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.

Wednesday, July 23, 2014

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

Thursday, July 17, 2014

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!




Wednesday, July 9, 2014

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.