A Transplant Patient's Experiences with Nutrition

by Jim Gleason, recovering Heart Transplant Patient (transplanted 10/19/94)

This is one in a series of short articles sharing this heart transplant patient's experiences in some area of common concern. Included in the series are similar articles covering Nutrition, Weight Change, Biopsy, Rejection, Medication, Exercise, Motivation & Boredom, Transplant Surgery, and Fear & Facing Death. These are not meant to replace any professional medical advice, but rather are one layman's interpretations of actual experiences he had while waiting for, undergoing, and finally, recovering from, a heart transplant at the University of PA Medical Center. While each person will have their own unique experiences, many have found this simple sharing to be of value in reducing their own concerns seeing that such feelings and experiences are part of the normal recovery process seeing that there is light at the end of what may now appear to be a very dark tunnel through the eyes of another who has passed this way ahead of them and, most importantly, the light at the end of that tunnel is not a train engine coming directly at them, it is the light of another sunny day, another gift of a day of life. May you find joy in that daily gift of life as I have through the miracle of this medical science known as transplantation.

"How Much Is That!?"

The company provided box lunch included a small (actually "tiny") bag of potato chips. I love them. But now I check and find that there is 10gms of fat in that tiny bag! that's 25% of my total daily goal. Today I placed that bag back onto the common table, exchanging it for an apple. See, I am changing - a little at a time ("Kaizen" the Japanese call it - referring to their quality improvement philosophy of "1% improvement over a 100 days" vs. trying to do "100% in 1 day"). Before my heart transplant I would have gone back and picked up more bags of chips, and put my apple back for others.

Over the years, with my constant enjoyment of food, I had been very lucky with the only side effect being excess pounds on this body of mine (see the article on Weight Changes). The explorations resulting from the virus attack on the heart showed no artery blockage or buildup - like I said: lucky! Now I live on steroids to prevent rejection of my recently transplanted new heart, and if I continue eating as I have all life long, I wouldn't be so lucky. The steroids that keep me alive also increase the likelihood of such arterial buildup. Some tradeoff, huh?

On first coming home from the hospital with the new heart, wow, did food look good! Hospital restricted diets for the past 2 months had the advantage of reducing my overweight condition, but I craved the missed tastes and variety now available at home. I focused on beautiful fruit plates (especially with all the supporting friends sending such baskets full of fruits) and totally enjoyed them. Very healthy, right? As time wore on, the added weight of my steroid magnified "old" eating regimen took its toll. Six months and 50lbs later, I decided enough was enough and enrolled in the local hospital's nutrition counseling program. It just felt so good to be alive again and I had always loved food and taste - celebrating life with food! I really thought I was eating better than ever before, but that weight kept coming up and up.

Goal Setting

Everyone was trying to help with gentle (and some, not so gentle) remarks - all given in love and encouragement by family and friends. But they couldn't make me do it. Only I could, so I began a regimen of disciplined eating of just regular food (not liquid supplements) focused on balance and specific goals in the areas of calories, sodium, fats, liquids and exercise. Maureen, my counselor, and I agreed to a target weight and schedule - slow and steady so it would be a life long and permanent loss. She was so amazed at standing next to someone with a "new heart" - to which I responded: "You should feel the amazement I feel, being the one with the new heart inside me!"

So what are the key ingredients of this weight control process? First and foremost, its a mental resolve - both a belief that I can do it (supported by the success while in the hospital), both the controlling what I would eat completely, but more importantly, keeping at it for a lifetime - and secondly, a commitment to take the action to accomplish these goals. They had to be written down goals, both in terms of the final outcome (i.e., ideal weight and feeling of good health - a quality of life made possible by this miracle of the donor's gift), but also to the steps to be taken to keep to that goal. These goals are reviewed every day, using the Daily Nutrition Diary form shown below.

The key to input control is the planning and recording of on this daily eating form. This process made me face the fact of what was actually passing my lips, something family never believed I was being truthful to myself about. Each item eaten is recorded by name, quantity, calorie, sodium, and fat content. Note is made as to location and activity when eating takes place. Totals in each of these categories are taken each day (and subtotaled by meal per day to insure proper balance) and compared to the goals set above. Awareness results. Reviews are held with the nutritionist, Maureen. Corrective action can take place when goals are missed. Self praise results and positive reinforcement takes place when goals are met each day.

What goals am I working with? (keep in mind that these are tailored to me as an individual) Daily - calories: 1600 to 1800; sodium: 2000mg; fat: 40gms; fluids: 64oz. Like I said, each days input is recorded and the totals compared with these goals. Slowly I am moving from a reactive (recording the foods after they are eaten) to a pro-active method where eating is planned at the beginning of each day. It has been interesting to see how expensive against these goals some foods really are - i.e., that tiny bag of potato chips mentioned above. A paperback book of nutritional values help to track the specifics - tedious, but worth the effort (just be careful of eating while you're looking up the food stats).

Two major changes in my eating habits may seem simple, but their impact is significant in my case. I now substitute flavored seltzer water (or plain water) for Coke (or any other soda). I eat fresh fruits instead of candy (especially chocolate candies like TWIX bars, a longtime favorite). This is very tough, but it feels so good, body-wise, each day when I accomplish these goals. Targeting certain mealtimes for improvement, one at a time, has also helped. Breakfast has been upgraded to a healthy cereal, skim milk and fresh fruit (including orange juice to gulp down pills with) menu. Now that's under full control. Lunch was a little tougher, but I'm doing pretty good, often green salad based - an easy thing with the advantage of a company cafeteria at my disposal. Water has become a mainstay for lunch - major improvement over past habits of 20oz of regular Coke. Between meal snacks are limited to fresh fruit - mainly apples. Recently I've add the flavored rice cakes for an evening snack - terrible when I first tried them a couple of years ago, now very acceptable and tasty. The evening meal, and dessert or evening snacks are where I still need to do major discipline work. I used to fill the evening with a great peanut butter (high in fat) and jelly sandwich, washed down with regular milk (now its always skim milk). Do I miss it? Sure I do. Same is true for ice cream. But all in all it is a reasonable program that I can live with for the rest of my life - and I'm loosing weight, slow and steady. Restaurant eating adds variety, but there's also more temptation, so there I have to be more careful. My wife, Jay, is very attentive when we're out and that's a big help - especially now that the paranoia of the steroid driven PM symptoms have been reduced. Before it was very hard to accept her help in that state of mind - but, have hope, it does pass.

Another goal is the amount of fluid intake. The 64oz of fluids every day is quite different from my fluid restriction of pre-transplant days. It's very important to overall bodily function to flush the system out every day with that volume, and my new heart can keep up with it now. The ankles are still showing signs of swelling (i.e., water retention), but this is getting better with each passing pound. I want to get the diuretics down to a minimum as part of an overall philosophy of reducing meds to a minimum (all per doctor's orders, of course).

The Role of Exercise

Another appetite control element is the daily exercise required by the heart recovery program. Walking for 30 minutes will not only keep me away from the refrigerator stuffed with food, but also replaces the satisfaction associated with food, with the great feeling of exercise. So I get two benefits for the price of one there. Taking a fresh apple (usually late in the afternoon, before supper) with me on that walk, also helps take the edge off the evening meal.

Progress to date...

My eating has improved dramatically, but the desire is still there, so its not easy. Blood pressures, driven high by the medications, are slowly coming down as the weight comes off. But, the big reward is that over the past 6 weeks, my weight has gone down 14lbs. and seems to be continuing at a steady 1 pound per week as long as I live up to those daily goals. I should note that this loss is coincident with still more reduction in my steroid dosage, so how much is due to that reduction of side effects? I don't know, but together it is working, and that's the key: Results! Each day is seen as a new start for this new heart. Yesterday's failure to meet goals is a lesson to be learned, not a failure to be depressed or give up over. Today will be better. And then there's tomorrow . . . Good luck - and my prayful support - in your own efforts of dealing with this challenge of eating healthy with a new heart! Sincerely and with HEARTfelt thanks, Jim Gleason

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