Weight Changes

A Transplant Patient's Experiences with Weight Changes

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.

"Weight Will Kill You!"

With such a warning, you would think that controlling my weight would be easy, right? Not so. The team educated us on the effects that the steroids would have on weight control - it would be very difficult. You would experience constant hunger. Anything you eat is magnified in its effect on the body - especially as it relates to clogging of the arteries, etc. This was an awareness, a warning, but not an excuse for what was to happen. Dr. Kelley couldn't have made it any clearer - this was a top priority. Weight gain will kill the heart transplant patient. Allow me to share my own experiences before, during, and after heart transplant surgery performed October, 1994 from the hind sight perspective of 7 months after transplant.

The Weight Roller Coaster

My six foot frame would probably feel best at about 200lbs. At the onset of these heart problems, my actual weight was 271lbs. By the time I had been evaluated for transplant and entered the hospital at HUP, this was about 250lbs (most of the loss due to a hospital stay for congestive heart failure that previous spring). By transplant time, under strict hospital diet control - part of my goals and motivation process (see Motivation & Boredom) - that weight was down to a fantastic 204lbs! Wow, but what a way to loose weight - and so expensive too.

I swore that I would never allow that weight to go back up, despite the forecasts of steroid side effects. It just felt too good to be at 200lbs - and was too hard to correct any gains like this. I couldn't get over the feeling of not having padding in my buttocks - there were bones there I never knew I had that hurt when I sat now - great! (talk about reframing pain in the mind, huh?) Having said all that, the fact of the matter is that my weight steadily went back up and up - just like the team had warned would happen. 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. I can't imagine what would have happened if I hadn't been exercising regularly (i.e., up to 6 miles of walking a day, 7 days a week).

The transplant team followed up the education received during the waiting period for the new heart, with private meetings with a nutritionist at visits for clinic/biopsy. Knowledge wasn't the issue. By the post op point of 6 months, the weight hit a high of 251lbs despite all good intentions. Something had to stop - as Dr. Kelley had warned: "Jim, weight will kill you!" Not only did all my new clothes not fit any longer (boy, had that been such a good feeling, coming home with a new set of smaller sized clothes - a gift from my daughter Mary), but I was starting to feel the physical effects again. That spark of vitality that returned with the transplant, was loosing its edge. Some new symptoms - i.e., a lightheadedness during walking exercise - appeared - but we still haven't been able to tie that specifically to the weight gain - but it does make sense, doesn't it?

A New Start (again...)

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 do it. Only I could. All good words and excuses aside, finally at 251lbs and month 7, I did do something. Our local hospital offered a comprehensive nutrition consultation service. I opted for a program similar to the Richard Simmon's DEAL-A-MEAL program - i.e., regular food (not liquid supplements) in a very controlled eating program focused on balance and specific goals in the areas of calories, sodium, fats, liquids and exercise. We agreed to a target weight and schedule - slow and steady so it would be permanent loss.

Program Details

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 loosing of the excess weight, but more importantly, the keeping it off - and secondly, a commitment to take the action to accomplish these goals. They have to be written down goals, both in terms of the final outcome, but also to the steps to be taken to get to the goal weight. These goals are reviewed every day, using the format shown below.

The key to input control is the planning and recording of a daily eating form. This 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. Corrective action can take place when goals are missed. Self praise results and positive reinforcement take 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 proactive method where the day's 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., the tiny bag of potato chips I have in my company supplied lunch box is 10mgs of fat. Realizing that, I put it back on the common table so I don't eat it. I take a second apple instead.

Two major changes in my eating habits may seem simple, but their impact is significant in my case. Substitute flavored seltzer water (or plain water) for Coke (or any other soda). 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 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. that's under full control. Lunch is 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. 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.

The 64oz of fluids every day is very 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).

Exercise (the subject of another monograph) is another key ingredient in the weight control process. Time to exercise must be kept to a priority and faced daily. Recommended levels are aerobic exercise (walking at a 3mph pace is excellent and safe) for 30 minute periods, at least 4 times per week. This is an impressive (slow) buildup from the limits upon hospital release just 10 days after surgery. With a walkman to fill the ears with music - or company to walk with - the walking exercise can be a real pleasure in life. This is a lifetime habit. It must become something to look forward to - not a dreaded punishment. Get creative.

Progress to date...

Over the past 6 weeks, my weight has gone down 14lbs. and seems to be continuing as a steady 1 pound per week as long as I live up to the 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. Yesterday's failure to meet set goals is a lesson to be learned, not failure. Today will be better. Anthony Robbins uses the CANI acronym, Constant And Never-ending Improvement. I am committed to making small changes every day to improve my recovery and chances of living life to the fullest. Over time these small changes add up to a totally different person. Weight wise, I need to be a different person. Certainly heartwise, I am a different person as of last October 19th - a beautiful rebirth - an opportunity - a challenge!


What drives all this, you ask? I think the reference to John Denver's song in celebration of life (see my Human Heart Story - Part 5 ) - says it best:

"I want to live,
I want to grow,
I want to see -
I want to know -
I want to share what I can give -
I want to be!
I want to live!..."

I hope your own experience with weight control goes much easier, but don't get discouraged if you share my experience. Maybe some of the ideas I have adopted will help you when you finally decide its time for your own recovery. It can be done. Remember Dr. Kelley's sage advice: "Weight will kill you!"

Sincerely and with HEARTfelt thanks,

Jim Gleason

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