One of the realities of being a heart transplant patient is that you will become a professional patient, a job you may never have seen coming. Prior to open heart surgery in 2000, I was barely a patient at all. In the 27 months of waiting for a heart and in the three years following the transplant, I have become a professional patient. There is a big difference in the way I approach a doctor’s appointment today than in the past.
In my case, becoming a professional patient began after a reprimand from my friend Dr. John Bennett. He thought I should be more precise with my medications and that it might not be in my best interest to carry a golf bag in the heat of summer. He was right. Had John not insisted on a defibrillator, I would have died in February, 2003. Thank you!!!
Dr. Harry Odabashian, of Prime Care Physicians in Albany, took over my case when John left to become CEO of CDPHP, our insurance provider. Harry really helped while I was waiting at Columbia Presbyterian and helped coordinate my care with Dr. Donna Mancini at Columbia Presbyterian. Harry was the good cop. Dr. Mancini was the bad cop. Dr. Mancini read me the riot act one day and it made a lasting impression.
At Tampa General, Dr. Hoffman laid out the law very quickly. She reprimanded me once when I took an extra Lasix pill and another time because I declined to stay at Lee County Hospital after an ER visit. At one point, the good doctor pointed her finger at me and said, “Mr. Doolittle, only one of us has been to Medical School and it isn’t you!”
When we got to the car, the young lady who had driven me there was still shaking from that exchange. She looked at me and said, “You so need another doctor.”
I liked the way Dr. Hoffman set the bar. I had heard a lot about her before I went to Tampa. I believe she is a strong patient’s advocate. And, I liked the fact that she was serious about compliance. I became 100 percent compliant with Dr. Mancini and the Lasix issue sealed the deal with Dr. Hoffman. On another occasion, she hiked on over to the rehabilitation center where I was an inpatient for a few weeks. My heart rate was running high, about 125, but nothing alarming. The staff refused to let me exercise and put me on a monitor. I was resigned to playing with tinker toys. I will always remember Dr. Hofffman storming into the room and ripping the meter off my hand and throwing it on the floor. “Who did this?” She found out and fixed it. I was immediately allowed to resume exercising. That may have been the day I fell in love with Dr. Hoffman. I was up and walking laps and doing light resistance training pretty soon afterwards.
Somewhere between Columbia Pres and Tampa, I became a professional patient. I wanted to succeed and I wanted to know how to do it.
At Columbia, I generated a table and entered all my medications, the strength and the time of intake. I added columns for the seven days of the week and used this list to ensure I was compliant. After every dose, I entered the date on the table.
I also developed a similar table where I entered the date and time of each blood pressure check and each heart rate reading. Before my transplant, when my heart rate hit 90, I was immobile. The only relief came from lying on the floor. Breathing would become difficult. Today, my resting heart rate is between 100 and 110 and everything feels great. What a turnaround!
I logged all my medication lists and vital systems readings into a notebook and would take it to the cardiologist for review.
As you probably know, going to the transplant clinic before and after transplant does not allow a lot of time for idle chatter. This is a “to do” for professional patients:
- Get your support network engaged. There are a lot of advantages to getting your support network involved in your pursuit. Ask one person to accompany you and take notes during an appointment. He or she will meet the doctor and taste a little of the hospital’s character. Make sure you introduce whoever accompanies you. It never hurts to have another set of ears in the room.
- Before seeing any doctor, know why you are going and make a list of things that need to be addressed. Make sure every question is answered. If you do not understand the answer, say so. Never leave the office or clinic without the answers you need. The only bad question is the one you do not ask. If you are in clinic, the physician’s assistant is a credible resource. If he or she does not have the answer, they will make sure the doctor knows your concern
- Always take a list of current medications to every doctor’s appointment. This saves time.
- Certain doctor’s will want to see your vital readings so have them ready.
- Interact with the physician’s assistant and with the physician. You are not going to get a lot of sympathy, the clock is ticking so be concise and direct.
- Do not rule out anything until you have heard what the physician is suggesting. Once I had read something about a therapy Dr. Hoffman had discussed with me. When I next saw her, I mentioned my research and stated to ask a few questions. Her response was, “Mr. Doolittle, you see, that’s the problem with patients who read.” I had no response for that.
- Understand your medications. At first, I used to just take my medicine because it was prescribed. It is safe to say that all the medicines heart transplant patients take have strong side effects. I believe the patient should do their own due diligence. I like the Mayo Clinic website and WebMd.com.
- Professional patients find ways to stay upbeat. In my case, Dr. Kransnoble, a psychologist at Tampa General, really eased my misgivings and misfortunes. You will face periods of anxiety. For me, there was no relief like a walk. When I could not walk, I stretched or meditated or sat in the shade by a pool. Light exercising in water was a great relief. Look, you are sick. Like it or not. Every doctor you see knows that. They can help but you have to do whatever is compliant and necessary to keep your dapper up. Your emotional outlook needs to be elevated and positive. You will go down a dark tunnel before you see the light at the end. But, when you get there, watch out world!
- At the end of each appointment or hospital stay, the doctor will give you a written or typed summary of the appointment. Read it before you leave. If you do not understand the instructions, or think there is an error, do not leave until it is clarified. Save these summaries in a file so that if you need to re-read the instructions, you have a reference.
- Read the transplant manual. I read both the Columbia Presbyterian and Tampa General transplant guides several times. Your support group should read it also. I carried it in my notebook along with the other forms
- Be present on the day and time of your appointment. You have nothing more important than prolonging your life.
- If it happens, call. When you read the transplant guide, there will be rejection warning signs. Some will say to call immediately. If it happens, do not procrastinate. Call.
- Last but not least, listen. According to my bride, that remains a problem for me. If you do not listen to your spouse, you can still make it a point to listen to your physician. If you are unclear, repeat your interpretation to the doctor. It is a good idea to write down any specific instructions… not the ones from your spouse but from the doctor.
At some point in time, your office visits will diminish. The better a patient you are, the faster that day will come.