Please visit, comment, ask questions or make conversation at our new, enhanced site at
Thanks, and don’t forget to become an organ donor!
Posted by cthodges on March 16, 2010
Please visit, comment, ask questions or make conversation at our new, enhanced site at
Thanks, and don’t forget to become an organ donor!
Posted by cthodges on March 9, 2010
I liked to go to work early. There is a certain serenity in the quiet workplace. We always arose at 4:00 a.m. Suzanne would hit the road for her ten-mile church, garden and golf course jaunt and I would truck on down to work.
On February 7, I arrived at the coffee shop at 4:30. It was cold. Very cold. Surprisingly, the shop was not open, but the newspapers were there. I parked and decided to grab a paper to wait for my pre-workday caffeine fix.
Upon exiting the car, a frightful chill ransacked my body. I took three steps and became paralyzed. I could not feel my feet or legs. Unable to stand, I slumped to the snowy ground.
I had no chest pain, no shoulder pain but I could not stand much less walk. I dragged my way back to the car, pulled myself up to open the door and grabbed the steering wheel to reach the seat. Turning the car on, I maxed the heat.
There was no sign of life at the store so I drove to my office door. Someone would be there at 5:00. I waited. Finally a truck driver arrived and helped me to a chair. Fainting seemed a strong possibility. I remember lots of spinning and black dots circling around. I lowered my head and received an aspirin from my helper.
Within fifteen minutes, the spinning stopped. I was too shaky to stand. Another worker arrived and helped me to my office. I tried to walk and although tentative, progress had been made. I wondered if I was having a stroke, like my mother and grandmother.
I fidgeted and tinkered until 8:00 when my daughter, Ashley, arrived. She asked what was wrong. I explained. She helped another worker load me into the car and off we sped to old friend and cardiologist, John.
Upon arrival, vitals were taken. Things were a bit out of whack but nothing monumental. When John checked me out, we talked about the immediate and past symptoms.
His analysis was congestive heart failure. John painted an image. Since my six-way bypass in 2000 and a pretty amazing rehabilitation, things had been going a little too well. Perhaps I had gotten lax with my medications. Perhaps I was overdoing life. Perhaps there was just plain too much stress, the killer of killers. Perhaps my diet was undisciplined.
Whatever was happening was dangerous. I had definitely entered end stage heart disease. The symptoms would only escalate and the prognosis was dim.
My reaction was to determine the immediate danger. John quietly said that there were no guarantees, not one year, not six months. We needed to get into rehab, increase and change our medications, meet often and dramatically change the diet to an absolutely no salt and no sodium way of life.
Compliance to these factors would determine my longevity. Compliance would also be necessary to qualify for a heart transplant application. John became unusually stern about the need for safe exercise and compliance. He had my attention.
John described my heart disease as an illness that would not improve but could be treated. He portrayed an image of a walker who was trudging along after open heart surgery and comes to a cliff. The hiker took one too many steps and the slide down was virtually unstoppable. It could be steep and quick or less steep and longer, but more deterioration was on the way.
Again, John cited the damage caused by those first few heart attacks. My heart had not bounced back and was functioning at about 19% with a 3% margin for error either way. No wonder I was cold, losing my memory and wondering why I could not feel my toes. My breathing was labored.
John began to write prescriptions, like coreg, lipitor, cozaar, lasix and several others. The frequency and dosage was disturbing. I envisioned a life controlled by pill popping. For someone who had difficulty tolerating any medicine, I was about to become a junkie.
Ashley had a freightened look on her face. John scheduled several tests and told me to rest before coming back tomorrow. Rest had become impossible, as I could not breathe if prone for two hours.
On the way home, we stopped at the pharmacy. Ashley said she would be back for the medications and took me to the couch. I started taking the medicines about an hour later. 60 mgs of lasix created quite a urinary splash. In a few days, my breathing became easier and my abdomen and weight began to change.
Lasix is a loop diuretic that prevents the body from absorbing too much salt and instead allows the salt to be passed in the user’s urine. Among other usues, Lasix treats fluid retention or edema in people with congestive heart failure.
Before February 7, I tipped the scale at 185 lbs. Two weeks later, I tipped the scales just shy of 150 lbs. Eventually, as the lasix intake fluctuated, I got back to about 165. However my breathing was best at 155 but I could not tolerate the quantities of lasix necessary to get there. My lasix intake was fluctuating between 160 and 200 mgs per day. That is a lot of lasix. My kidneys were working hard to keep the outgoing pace.
The other staple medication was the 24-hour timed release Coreg. I loved that drug. It seemed to stabilize things. When I went to 90 mgs a day, I knew I was in trouble. Once I adjusted to the medications, the dosage always seemed to escalate. The intake was aggressive.
On February 21st, I began to research heart transplantation and other alternatives. I settled in for a long night’s read. I was determined to be ready to talk with some basic knowledge to John.
It was a long, hard night’s read for Suzanne and I. Every page seemed to raise more questions. Other than the medication therapy, it seemed we were in a train about to wreck. John’s “falling off the cliff image” stuck with me every day for the next 33 months. I grasped for limbs to break the fall. On that day, there were no limbs in sight. Suzanne and I started the slide together.
Posted by cthodges on March 5, 2010
Health insurance is on the scene and in the news. It should be. During my 10-year battle with heart disease, a sound health insurance plan was the grease that turned the wheel. Without the coverage and cooperation provided by my carriers, my transplantation would never have happened.
I was satisfied with my original carrier, who covered all events surrounding my first series of heart attacks as well as life-saving six-way bypass surgery. The staggering costs of procedures, hospital care, after care rehabilitation and medications were mind-boggling and unaffordable. My original health insurer stood with me and behind me, and, quite possibly, in front of me every step of the way.
Health insurance has always been important to me. As a former employer of many relatively low-income, non-union laborers, I felt that a fully paid health insurance benefit provided necessary incentive and assured longevity and peace of mind. Before the premiums exploded, we provided this fully paid benefit. Undoubtedly, many overqualified workers stayed with us because of that health insurance. Of course, health insurance did not prevent underachievers from underachieving, but they sure stayed longer! Another chapter.
Approximately two years after my open-heart surgery, I was rushed to the emergency room. I don’t remember what happened. I awakened on the floor of the kitchen in a bad way. Pea soup was dripping from the ceiling. I was treated in the emergency room and visited by my loyal cardiologist, John, who thought it wise to spend the night. Against my wishes, I agreed.
Apparently, the carrier disputed the validity of the overnight claim. Occasionally, I received frustrated calls from the credit department at the hospital. Of course, I got the brush-off from the carrier, but each time I called they agreed it was a valid claim.
In any case, I shifted our company policy to another, local provider, that had been founded by Jack, a friend and physician, now deceased. From the patient’s perspective, there was an immediate and noticeable difference at every level of service.
My sense was that Capital District Physicians Health Plan (CDPHP) was committed to getting it right, the first time around. Regrettably, I was a bad risk. I can only apologize for that.
The support, patience and counseling I received from CDPHP, their out-of-network provider, United Health, and my very special CDPHP transplant health coach, Paula, are the reason I arrived at Tampa General and one of the main reasons that I am alive today.
It may be fashionable to be negative about health insurance, but my experience with CDPHP could not have been better. Every day, I think of their role in my longstanding battle with heart disease. I praise this provider at every opportunity.
That does not mean that patients do not have to engage the carrier or become informed about their treatment. Frankly, if you are pursuing a heart transplant, you must embrace your new partner, not battle them.
It is the patient’s responsibility to ask the right questions of your physicians, try to understand the answers and communicate with your carrier every step of the way. If in doubt, make the call.
It is also the patient’s responsibility to address the transplant process with as much vigor as possible. During the fight against heart disease, there will be many things in your life that may be unmanageable. For me, CDPHP and health insurance were not among those things.
You must be a responsible consumer and patient. Open the doors of communication and walk through them. Get pre-approvals at every reasonable opportunity. It saves time, paperwork and aggravation. Document everything. If you are incapable of managing your insurance, find someone in your support network that can.
I do not believe that your health insurance experience has to be negative. I believe it should be positive. I submit that you are the one that determines how that relationship goes. I don’t want to beat it into the ground, but staying ahead of the treatment-insurance interaction facilitates the entire treatment process.
I can say in all honesty and with complete confidence, that were it not for Paula, who I have never met, I would not have a new heart today. Thank you, Paula and thank you CDPHP!
More to follow.
Posted by cthodges on March 4, 2010
It is only natural to wonder where you stand on the wait list at your transplant center. Sometimes this information will put you at the ready and sometimes it will frustrate you. No problem. Whether the information is to your liking or not, its mere publication underscores OPTN’s commitment to as transparent a process as is reasonably possible. Remember, these are only statistics and heart transplantation is a very real, very human experience.
While these statistics may give you a hint of your standing at the transplant center, they in no way tell the whole story. There are more factors than time on the wait list, status and blood type. Geographic location, overall health and body size are just three of the plug-in components. There are others.
At first, I was enthralled with the tracking capabilities of OPTN. I have attached a link on the home page of this web log. Viewers can filter statistics about the national, state, or even specific transplant center. There are also numbers available for post transplant information and year-to-date activity. If you want to have a very general overview of your standing, take a look, but don’t become enamored with the stats. A call to the transplant coordinator’s office may provide the most valuable insight.
I can remember having a discussion with a terrific nurse practitioner about the number of patients in my blood type (A positive) on the center’s wait list. I was surprised when she told the cardiologist that I knew more about the Columbia Pres transplant wait list than did she.
Anyway, here are some statistics that may be interesting.
Quite simply, there are not enough heart organs to go around. This dilemma pressures the system and makes it imperative that organs go to compliant patients who are in the physical and mental condition to accept the precious heart.
This chart from OPTN denotes the historical survival rates of men and women for 1, 3 and 5 years:
|Number Functioning /
|U.S.||Male||1 Year||3931||87.5||(86.5, 88.4)|
|U.S.||Female||1 Year||1433||85.6||(83.8, 87.3)|
|U.S.||Male||3 Year||4856||78.9||(77.8, 79.9)|
|U.S.||Female||3 Year||1726||76.0||(74.2, 77.7)|
|U.S.||Male||5 Year||4514||72.4||(71.3, 73.5)|
|U.S.||Female||5 Year||1488||67.4||(65.4, 69.3|
This chart denotes the survival rate of recipients as classified by status at the time of transplantation.
|Region||Recipient UNOS Status at Trans||Years
|Number Functioning /
|U.S.||Heart Status 1A||1 Year||2098||85.4||(84.0, 86.8)|
|U.S.||Heart Status 1B||1 Year||1839||86.6||(85.1, 88.1)|
|U.S.||Heart Status 2||1 Year||1425||89.9||(88.4, 91.5)|
|U.S.||Heart Status 1A||3 Year||2365||74.6||(73.1, 76.2)|
|U.S.||Heart Status 1B||3 Year||2402||79.7||(78.2, 81.1)|
|U.S.||Heart Status 1||3 Year||50||77.1||(65.6, 88.6)|
|U.S.||Heart Status 2||3 Year||1761||81.0||(79.3, 82.7)|
|U.S.||Heart Status 1A||5 Year||999||67.4||(65.1, 69.8)|
|U.S.||Heart Status 1B||5 Year||1046||72.1||(69.8, 74.4)|
|U.S.||Heart Status 1||5 Year||2273||71.1||(69.6, 72.7)|
|U.S.||Heart Status 2||5 Year||1681||72.8||(71.0, 74.6)|
I regularly visited the OPTN site and filtered information about the number of patients on the waiting list at Columbian Presbyterian and later at Tampa General. That way, I could measure the number of patients waiting and the number of transplants that had actually been performed at the center.
At one point, the number of patients waiting at Columbia exceeded the number of annual transplants by more than 2-1 and at one point almost a 3-1 ratio existed. That is one reason why, after 18 months and one false alarm, I decided it was time to look into other centers, a practice actually recommended by Dr. Oz, one of Columbia Presbyterian’s foremost surgeons. Dual listing is permitted by UNOS and most transplant centers, but not by all insurance carriers.
After being diagnosed with heart failure, one of my very good friends, a non-practicing physician, advised me that, “In the business of medicine, when you are a patient in need and standing in line, you are in a bad place in a terribly flawed system.”
I took those knowledgeable, experienced words to heart and made it my cause to never be standing in line waiting for help that may not arrive. I must confess frustration that at times there seemed no way around certain aspects of a stressful system.
It did seem that the donor award system was flawed, sometimes unjust and contrary to the donor’s wishes. I do not presume to have a solution to a system that many of the physicians at the core of the transplant profession agree is tainted. But, I am working on an opinion and welcome all suggestions.
Please feel free to post a comment or e-mail me directly at HilandsHeart@aol.com.
Posted in Uncategorized | Tagged: Columbia Presbyterian Hospital, Heart transplant, Heart transplant statistics, Heart transplant survival rates, Heart transplantation, OPTN, Survival Rates, Tampa General Hospital, UNOS, Wait list alternatives, Wait list statistics, Wait List Status | Leave a Comment »
Posted by cthodges on March 3, 2010
When patients meet the transplant center’s criteria and are accepted for transplantation, all their data is submitted to the United Network For Organ Sharing (UNOS). UNOS has been the administrative arm of the Organ Procurement and Transplantation Network (OPTN) since inception on September 30, 1986.
Currently, the members of the OPTN Board of Directors also serve as directors for UNOS. OPTN is “the unified transplant network established by the United States Congress under the National Organ Transplant Act of 1984.” According to the act, OPTN is to be operated by a unique private, non-profit organization under federal contract.
These are the 11 regional zones over which the Organ Procurement and Transplantation Network oversees all organ transplantation.
The chart below details heart transplants performed in the country’s eleven regions. 2,363 heart transplants were performed in 1995, the highest recorded annual rate. 2009 was the third consecutive year that the number of transplants decreased.
Under the National Transplant Act of 1994, the OPTN responsibilities are:
1. Increase and ensure the effectiveness, efficiency and equity of organ sharing in the national system of organ allocation.
2. Increase the supply of donated organs available for transplantation.
The role between OPTN and UNOS can be confusing, but UNOS is charged to:
1. Establish an organ sharing system that maximizes the efficient use of deceased organ through fair and timely allocations.
2. Establish a system for the collection, storage, analysis and publication of data pertaining to the patient waiting list, organ matching and transplants.
3. Provide information, consultation and guidance to persons and organizations concerned with human organ transplantation in order to increases the number of organs available for transplantation.
With this mandate, UNOS has developed UNet, an online database to provide transparent information about all transplantation data, including information about patient waiting lists, nationally, by region or by center.
UNet is a 24/7 system that allows centers to:
All transplant programs in the country must use UNet. As of February 12, 2010, the below chart identifies the number of persons awaiting heart transplantation in the United States by region. There are many filtering options at the OPTN site. Interested persons can identify the number of waiting patients by organ, blood type, or status and by region or even by specific transplant center.
There are many factors, including blood type, status, wait time, cavity size, gender and other elements that UNOS utilizes to determine recipients of donated organs. But, that is a whole other chapter.
Posted in Uncategorized | Tagged: Heart status, Heart Tansplant Survival Rates, Heart transplant, OPTN, Organ Procurement and Transplantation Network, United Network For Organ Sharing, UNOS, Wait List, wait list for heart transplantation | Leave a Comment »
Posted by cthodges on March 2, 2010
My goal is that the information on this web log helps other wait list, heart-diseased and transplant patients know what to expect along the way to a happy landing. To further that goal, I share my experiences, some pertinent background information and experiences of other transplant patients that I have met.
If you would like to contact me, please post comments or e-mail me directly at HilandsHeart@aol.com. I look forward to hearing from you.
On Monday November 2, 2009, I received a heart transplant at Tampa General Hospital. I had been in congestive heart failure since February 7, 2007 and on the wait list for 25 months, during which time my status bounced around a bit. For 17 months, I was listed at Columbia Presbyterian Hospital in New York. With the help of my insurance carrier, I transferred to Tampa General Hospital in early March 2009.
Eight months later, I received the big call and within hours a wonderful new heart. I feel blessed, but it was a long road with more hard work ahead. The transplantation experience is a life experience and touches all one’s family members, neighbors, friends and associates.
From my experience, I have come to realize that heart transplantation is a multi-step process that requires a very strong support network, a good amount of discipline and a healthy amount of inner strength. I made miscalculations and mistakes along the way.
Even after a fair amount of research and attending very worthwhile pre-transplant courses at Columbia Presbyterian Hospital, I was ill prepared for the post-transplant recovery and especially the effects of the mandatory medications.
At every stage of my heart disease, from my first heart attack, through open-heart surgery to heart failure and wait listing, including the actual transplant and post-operative care, I have received only the most professional and dedicated care.
Unfortunately, I may not have been the most knowledgeable or easiest patient. Thanks to my team of cardiologists, a wonderful family friend and general physician and a very patient transplant psychiatrist, I learned the importance of being informed, disciplined and compliant in approaching the end result. Once on the wait list, it was clear that the wait would be complicated, often confusing and difficult. The closer I came to transplantation, the more warnings I received about recovery.
At every level of the process, I admit to periods of frustration, pain, exhaustion, limited mobility, shortness of breath, fluctuating weight and more frustration. For myself, a certain amount of meditation, stretching, aqua-therapy, a totally revamped diet and a loving bride helped get me through the endless waiting period.
The observations and experiences on this site are drawn from my observations about my transplantation.
Posted in Uncategorized | Tagged: Columbia Presbyterian Hospital, Heart status, Heart transplant, Tampa General Hospital, transplant patients, Wait List, wait list for heart transplantation | 2 Comments »
Posted by cthodges on March 1, 2010
When Tampa General Hospital transplant coordinator Ann called at 11:32 p.m. November 1st, 2009, I was lucky to hear my cell phone.
Her declaration that “we have your new heart,” stimulated a host of emotions, including an unexpected tinge of hesitation. In my 25 months on the list, I had been called once before, to Columbia Presbyterian. As I did not receive that heart, I knew that this time there was also the possibility that this heart was not for me.
I wanted to believe this was for real, but did not want to set myself up for another disappointment. As my family was spread around the country, I certainly did not want them to start jumping through hoops without knowing this was going to happen.
“Can you check-in at the hospital in about an hour? The surgery is scheduled for 3:00 a.m. The ER personnel will process you in and direct you to 8-K.” Ann said.
“I’ll be there, Ann. Thank you!”
Ann was serious. The realization that Tampa General Hospital had procured an organ for my heart transplantation sparked so many physical, psychological and spiritual responses that I literally sat for ten minutes spinning through my preconceived “to do” list.
It was a start. It seemed prudent to know this was for real before pulling the trigger and setting in motion a chain reaction of airline tickets, lost work and vacated housing. After all, the cavity size would have to be a match and there would be other considerations.
The staff would have to evaluate my mental and physical state. The stakes are high. Organs do not go to unfit, unwilling or non-compliant recipients. A surprising number of waiting transplant patients change their minds at the last moment. As a result, more than one recipient is usually summoned for the same organ. To my surprise, this was not the case on November 1.
I busied myself psyching for a letdown.
I began to work my way through my punch list. Despite the midnight hour, I called Bing for a ride. No answer. Adrienne, likewise. The real world was bracing for the hard reality of Monday morning. I decided to walk to the hospital.
So, to shower and shave. That went pretty well, but the nerves were beginning to show.
I put on my lucky white shirt, some low cut socks, underwear and tried to decide between olive or beige shorts. After packing, I decided it was time to put Suzanne on red alert. She would not be able to catch the direct flight from Albany to Tampa before 12:30 p.m a.m. November 2, 2009.
The important thing for Suzanne was to know the call had come. There was a good chance and that I would call as soon as I knew it was a go. I suggested that she not notify all the kids until we knew for sure.
As always, Suzanne received the news with a rewarding hopefulness. Since relocating, our time together had been sparse but tough decisions are part of the transplant commitment.
We were sure the good people at Southwest would make an accommodation for a late ticket. Their direct flight from Albany would leave at 12:30 and arrive in Tampa at 3:30. If the procedure took place, I would still be under the anesthesia.
I called my friends Annie and Herb, who boldly announced, “This is great! Keep the faith, Doo!” Herb does not leave a lot of room for indecision. My spirits were lifted.
So, on with the sandals and away I charged to the elevator. Arriving in the lobby, I checked my appearance only to discover I had not chosen either the olive or the beige shorts. Back at my room, I donned the beige.
The hospital was close, but I had been in the hospital for five days the week before and I was experiencing some difficulty walking. The adrenaline seemed to surge me through the ER doors.
On the way to the hospiotal, I called the consummate healer, my stepdaughter, Cari, who was resting along with grandson Matthew. Next I called my friend and the first Albany cardiologist to save my life, John, who had overseen my open-heart surgery in 2000. John did not blink. He took the late night call with enthusiasm. John has a calm way of rising to the occasion and boosting one’s spirits.
The ER people seemed puzzled that I had walked to the hospital. They were also surprised that I did not have an intravenous feed. We worked our way through the obstacles, but I had an uneasy feeling that a mistake had been made. I had been on an intravenous feed for five days previously but had been discharged late on a Friday night.. In any case, I was soon away to 8-K via wheelchair.
On 8-k, Rose introduced herself as my nurse. She conducted a preliminary check, took all the vitals, drew some blood, conducted a quick interview then asked about my mental state. By this time, the activities had sparked a fair amount of nervous energy.
Rose seemed puzzled that I did not have a Primacor intravenous feed, from which I had been removed when I was discharged from the hospital on Friday. The intravenous feed affected my wait list status.
Primacor is an inotrope and vasodilator that works by increasing the force with which the heart pumps blood through the body while widening the blood vessels and further facilitating the blood flow. After my last three cauterizations, I had to stay for a few days to receive infusions and had realized almost immediate relief that eased the heart failure symptoms for a few weeks.
After meeting with Rose, I had the sinking feeling that a clerical error had been made. I thought I was about to be sent home. I called Suzanne. She was calm but puzzled. We both knew there was a possibility this heart would not be for me, but Rose asked if I was prepared to proceed. I told her that I had waited a year and a half at Columbia before coming to Tampa more than six months ago. Rose understood my readiness.
Rose inquired about my support network. I explained that Suzanne would arrive Monday afternoon and stay until I was in a safe place and that Hiland, jr. was in Fort Myers, where he and Liz were expecting the arrival of Lily Doolittle any day. Rose was satisfied that the wheels were turning.
The missing intravenous port seemed the only problem. Without the Primacor, I was no longer a status 1B. Rose informed Ann, the coordinator, of the confusion.
“Will I be going home?” I asked.
“We’ll see. Not if I can help it. You are still scheduled for a 3:00 a.m. transplant.” My hardworking heart was pumping away.
It was two hours before surgery. I called Suzanne explaining the tenuous position. Once again, the irony of the transplant process made it difficult to get mentally prepared for what I knew might be a tough journey.
That mental preparation is as important as the physical preparation. As my heart had deteriorated, I was more able to control my mental state than my physical state.
Rose came back. She was calm and oozing of confidence. Her strength was reassuring. She located a good vein, sank the IV anchor and tied it down.
When Ann arrived she notified us that she would have to call UNOS to notify them of my status change. It was clear that UNOS would determine whether I would be going home or not.
Before Rose followed Ann to a landline, she instructed me to rest and assured me that the right thing would happen. “You have waited a long time,” she said.
It was 2:00 a.m. November 2nd, 2009. Surgery was scheduled in one hour and the organ needed to find a home pretty quickly. I thought there was a time deadline and it was drawing near. I was at the hospital and ready, catheter or not.
At 2:40, I called Suzanne again. “I may be going home. I’ll keep you posted.” Before I hung up. Rose burst through the door.
“You are on for 3:00 a.m. Lie down, go to whatever hiding place your mind goes and breathe. This is real.”
I handed Rose the phone. “Explain what’s happening to my wife, please.”
I lay down on the bed, crossed my hands across my lap, closed my eyes and gave the Lord’s Prayer one more chant. I immediately fell asleep, at peace and quiet.