Last night I received an e-mail from a young lady. Don’t laugh, it’s not that unusual. I have lots of daughters and daughter in-laws and two gorgeous granddaughters. Actually, this was no laughing matter. The woman said that she had been told by her doctor that she had heart failure and needed a transplant. She wondered what she should do.
Firstly, I do not offer and am unqualified to offer any medical advice.
This fact was made perfectly clear to me when while on the wait-list my highly regarded cardiologist, Dr. Hoffman, at Tampa General sat me down after I had self-diagnosed the need for 20 additional mgs. of Lasix.
The good doctor pointed her finger at me and said firmly, “Mr. Doolittle, only one of us has been to medical school and it isn’t you! If you do not comply with your medication prescription intake, I cannot be your cardiologist.” I sheepishly received her reprimand.
When we got in the car to drive home, my daughter-in-law, Liz, looked at me and said , “Oh my God, you so need another doctor!”
My take was quite different. Now, I felt I had a head coach who was not only going to administer my care but who was going to drive the bus all the way home. I liked the doctor’s message and determined to always be compliant. I committed to call the hospital when things were not going well and to get in the best physical and mental shape possible for transplantation.
In any case, the young lady’s inquiry sent me back to my trusty Tampa General Heart Transplant Guide as well as to the same guide from Columbia Presbyterian, where I had been listed before arriving at TGH. The Columbia Guide is much larger and contains more specific information. However, the TGH Guide is in plain language that steers the patient through the process quite nicely.
To answer the young lady’s question, I re-read the pre-transplant portion of the TGH Guide. The booklet is divided into six sections.
- Pre-Evaluation Phase
- Evaluation Phase
- Activation and Surgery
- Postoperative Care – CVSICU And 8A
- Ready to Go Home
- Post Transplant Medications
To answer my friend’s question, it seemed logical to begin at the beginning. I know she wanted to know what I had wanted to know when I was told I was in congestive heart failure and needed a transplant. That is, will it work, how does it work and when will I receive a heart?
Heart failure sounds pretty terrifying. It commands attention and action. And, it causes both emotional and physical unrest for the patient as well as the patient’s family and good friends.
It is estimated that there are approximately 4 million people that are living with heart failure in the U.S. Before looking into what my friend should do next, it is important to learn as much as you can about heart failure and all the possible treatments, most of which come with preset stipulations.
Tampa General explains that, “the heart needs a certain amount of blood to function normally. The amount of blood and oxygen needed changes when seating or exercising. Heart failure means that your heart cannot supply enough blood and oxygen to your body. Sometimes heart failure is called ‘congestive’ or ‘chronic’ because it is associated with fluid buildup, or has been present for a long period of time. Heart failure is a condition that is very different from a heart attack. A heart attack occurs suddenly and is painful. On the other hand, heart failure occurs over a long period of time and causes limitations in your lifestyle rather than pain. Having heart failure does not necessarily mean that you have had a heart attack or are going to haven one.”
In my case, I had multiple heart attacks on September 10, 2010 and open-heart surgery September 11, 2010. I was advised that my heart showed signs of other heart attacks over a period of years. In 2003, a defibrillator was installed. I have received cardiological care ever since the surgery.
For me, lifestyle changes took place after the open-heart surgery. The recovery was intense and for someone who had been very active, I found myself more prone to rest than to exercise. My diet immediately changed dramatically. Salt products were bagged and given to charity. We learned what to eat and how to prepare it. At first it was bland, but the change made me feel better. Quite noticeably so.
Before the heart attacks and while writing a novel, I sometimes found myself smoking along with the book’s fictional characters, all of whom smoked all the time. I have never touched a cigarette since the open-heart procedure and frankly am repulsed that I ever smoked.
My cardiologist, Dr. John told me that for a man with my heart, smoking a cigarette was akin to lighting a stick of dynamite. Those words still burn pretty brightly in my memory bank.
TGH lists the following symptoms for heart failure:
· Fatigue – Mild heart failure is often compared to aging, but the feeling of being tired can last a long time. If you do not have the energy to enjoy a walk, you may be in trouble.
· Shortness of Breath – When lying down or during exercise, the patient may feel like they are gasping for air. It is not uncommon to notice a cough. Elevating the head can alleviate some of the discomfort.
· Loss of appetite/nausea – The fluid backup may cause you to feel full or even nauseous before easting.
· Swollen ankles – If you have been standing or sitting for long periods, your feet may feel swollen.
· Weight gain – Gaining weight in a short period of time is a signal that you may be retaining liquids. If you gain 3 to 5 pounds in a one or two day period, you should contact your cardiologist.
· Reduced daytime urination – This symptom occurs because blood is drawn away from the kidneys to help other areas of the body.
· Increased nighttime urination – While you are at rest, the blood returns to the kidneys you will urinate to remove the it.
The TGH Guide refers to attitude. In my case, my bride allowed no time for any negativity. Sometimes I found myself doing things I could not believe, but that exercise really kept me in as good shape as possible.
At one point before arriving in Tampa, I was taking 200 mgs of Lasix a day to reduce the fluids. Dr. Hoffman reduced my intake to 120 mgs and made other adjustments to other medications. Because of the Lasix, I never really knew what I should or actually did weigh without the fluids. After all, in September 2000, I had been active, rarely sick, never hospitalized and pretty fit at 180-185 pounds.
Now, I cannot add weight. Believe me, I have tried. But, that is another chapter. Next, we will look into what my friend can do for heart failure.
Until then, think well, act well and be well.