Returning to Work

A Transplant Patient's Experiences with Returning to Work

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

Co-authored with Marika Chalupa, Kidney Transplant Recipient

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.

With so many younger people receiving transplants these days (and from the view of one who is now 54, more people fit that "younger" category than ever before in my eyes), the question of returning to work post transplant (or even starting to work for those who are reaching that stage of their lives for the first time) is a common concern. While each recovery is unique, that return to productive employment is often an important milestone in the recovery and rehab process - both mentally and physically. My personal experience as a heart transplant recipient back in late '94 was not unusual. First came accepting that I may never work again (either through pending death or post op quality of life). Next was the education of my short and long term disability benefits (a job would be kept open for me at the same company I had worked for up until I entered the hospital to await the new heart). Finally came the day when I returned to my old job just four cardiac-rehab-filled months after surgery. This scenario was an ideal one - for me.

It's Monday, March 6th, 1995. Co-workers, about 25 of them, are standing around me as we face a big sheet cake. It's a celebration of the first day of my return to work, a day that just six months earlier, back in September of '94, I had given up any hope of ever seeing again. Back then, many would have described me as so involved in my work - I loved what I did even back then - that they probably could not have imagined me ever giving up that work. But, as my cardiologist said those fateful words: "Its time. You have to cease employment and go down to see the experts." I responded so calmly, asking for her phone. Speaking to my manager (and best friend), Jim Dougherty, I told him I was quitting. With the first of so many blessings, Jim responded by asking what this was about. After describing my condition to him, he pointed out that we were covered by short-term disability (how na•ve of me to never have paid any attention to that benefit - but then who ever anticipates they might some day need such coverage?), and beyond that six months of full salary, there was long-term disability (2/3 salary for who knows how long...). Ok, so I wouldn't quit, but I wasn't coming back to the office except to drop off my things the next day. A job would be waiting for me, Jim continued - but I didn't hear that, at least not then. I had more important things to concern myself with, and so with no thought of how I was going to support my family or self, we "went down to see the experts" at HUP - a story that is detailed in Section 1 of this book. Transplanted October 19th, I returned home just 10 days later. After one month of rest and gradual exercise, there followed 3 months of cardiac rehab at our local hospital and amazing return to a fitness I hadn't known in several years. Finally, and just coincidentally, almost exactly six months to the date I left (and just under the six month short term disability coverage), here we were around this cake, smiles of amazement and encouragement everywhere. I felt like I was ready to conquer the world. But a loving God tapped me on the shoulder when news spread around the gathering that another of our fellow workers had unexpectedly died the preceding night. He had gone out a year ago and underwent open heart surgery, returning to work last spring, and after a year of working, was now a sobering reminder of the thin thread we all live. I would never forget those emotions, nor the message that tempered our celebration that day.

During my absence I had conducted an unplanned education program for my fellow workers/friends by e-mailing regular "status reports" on my condition. These reports were detailed and long-winded - but very upbeat, a reflection of my own attitude throughout the six months. Unknown to me, these reports were circulated among friends and posted on department bulletin boards. Those following the story far exceeded any intent on my part and resulted in an on-going stream of cards and notes of support. When I no longer felt the need to write them, people called and wrote to say they missed them. They missed the "good news" these reports delivered into their own lives. Why not write a book, many asked - but this was, at least at that time, the furthest from my mind. When it came time to return to work, it was just a continuation of the reports, only in person. It seemed that everyone I met (and there were 2,500 working in our three-building campus) were constantly stopping to offer encouragement and express amazement about this "miracle." Their most common comment was:"Wow, I can't believe I'm standing next to someone who has another person's heart inside them!" To which my favorite retort was: "You should see what it's like to be inside looking out! It's even more amazing!" I felt their support in those words were even more powerful in aiding my recovery than the 44 pills a day I was still taking - and besides, except for the swelled head, those words didn't have all the dangerous side effects the pills had!

The understanding and support of co-workers were critical factors in my overall success. Their reaction, I see today, was a reflection of the attitude I showed them in dealing with the heart challenge (as I've come to refer to it). I was not afraid to talk about it, even proud, to be honest about it. Even days when I felt tired or less than "tip top" I would live up to their comments of "how great you're looking, Jim!" But this is one extreme and I confess to having met many others who fall anywhere between returning much faster than I did to those who accept early retirement or permanent disability.

Today I work for the same large corporation, Unisys, with no limitations due to that transplant. I have recently moved up to a very demanding leadership role in our Worldwide HR Recruiting and Staffing function, the most challenging job in my entire career (to date) and I can enthusiastically say "I love it!"

That success, along with extensive contact with literally hundreds of heart (and other organ) recipients over these past 4 years, has led me to define a multi-step approach to facing the post-transplant back-to-work challenge. Basically it goes like this . . .

1. Set written goals while waiting for the transplant and after
2. Keep active both mentally and physically to the degree possible both before and after the transplant
3. Get into a rehab program as soon as your medical conditions and transplant team permits
4. Use this "sabbatical" time to learn new skills, possibly leading to different employment areas better suited to your needs
5. Slowly get gainfully involved again - with support and volunteer groups - to try out your new skills and to transition to your employment goal (the one written down in step one above)

A recent event serves as a real life example of how this process can work. Let my friend Marika tell it in her own words . . .

Back to Work After a Long Absence

by Marika Chalupa

In 1990, I was diagnosed with End Stage Renal Disease (ESRD). Even though I had suffered from Systematic Lupus Euphrates (SLE) since 1982, the finality of losing my kidneys was devastating. After the initial denials and slight depression, the time had to come to face reality. Added to the misery of the illness, was the fact that physically I was not able to work. As much as some of us dream of retirement, at age 33, I was not ready to be unemployed---being JUST a mom, not to mention a sick mom!

Before my illness, work was a major part of my life. I actually thought I was quite important (I mean this semi-facetiously)---I supported all the computers that run all the radar towers in all the major airports in the US. How childlike those thoughts seem now. However, back then lying in my hospital bed, the doctors were telling me that the last thing I should be thinking of is work. How could I not work? How could I support myself? I could not imagine working while doing dialysis.

For a while, I wallowed in my sorrow. But, my personality is one of strong will, as my mom pointed out to me. I knew I had a reason to live - my son just one of them. So I quickly gathered myself up and lived in a quasi-denial. Despite doing peritoneal dialyses three times a day, I was in relatively good heath - mentally and physically. However, my doctors agreed that my grueling career as an analyst for Unisys was well behind me.

With the new freedom came a new outlook on life, in which I lived for the moment. I traveled, even with all my dialysis equipment and solutions. We (my family) lived as if nothing was wrong. They were all amazed at how well I had adjusted to dialysis. No one thought that receiving a kidney was ever going to happen. For nine months, my kidneys had come back to the point where I did not need to do dialysis. It was a miracle---one I treasured. It made me feel that anything is possible.

However, shortly after that time the kidney function declined seriously and just before my second miracle happened, the doctors were talking about dialysis four times a day. Yes, I was on the transplant list. However, the thought of actually receiving a kidney never seemed like reality. I thought about it very little. Yet, when I did, I knew that when it happened I would reach another phase in my life.

When phase II came, I was totally unprepared. During those years of dialysis, I had volunteered at my son's elementary school. Now with the transplant, I had several options. My first was to try to get back with Unisys. However, they were not hiring, but I sent them a resume anyway. Who knew it would play such a role years later?

Of course, I have been fortunate. Good long term disability insurance provided me with the opportunity to upgrade my work skills; and, with the help of the state agency, the Office for Vocational Rehabilitation (OVR), which counsels and advises the disabled and aids them in their return to productive and gainful employment, I was well on my way. After many interesting sessions with my counselor, we concluded that a seeking out a masters degree in technical and science communication would show a potential employer that I was serious about working again. The insurance company paid for half of the tuition and OVR paid for the other half.

In the meantime, my options increased. I volunteeredÑand I mean volunteered. Became a committee person in the township, edited the book reviews for the librarian at my son's school that led to free books for the school, put together a database for a camp that sponsored inner-city children. But most importantly, became involved with the transplant support groups. Interestingly, it was Jim Gleason, my "old manager" from Sperry (now Unisys) that led me to the group. He suggested I take over some of his duties, because of the increasing demand of his job. Thus, I took over his role as editor of the Philly TRIO newsletter.

Doing well in school, volunteering, and editing the newsletter was just what the doctor ordered. I was enjoying the people and the challenge of being out in the real world again. When Unisys called me to interview for a job with the Security Development Group, I was shocked. However, it was the best possible scenario for me. Going to work with Unisys meant I could retain all my benefits, and contribute back to a company that was always good to me. I must admit that knowing Jim Gleason has been a bit of a godsend for me. Having Jim as a reference I'm certain helped me get the job.

My initial fears of working again were quickly squelched as the weeks went by. I found the environment, the work, the possibility of travel, and the people were just what I needed to get back into life. Yes, retirement can be nice. It afforded me the time to do several things that I enjoyed. However, those many days when the rest of my peers were working or my son was off to school, I found that retirement can be quite lonely for someone only on the brink of 40.

Today, after three months of working full time, I know I made the right decision. The long seven and a half years of being home has made me see things quite differently, especially my own importance. Though I have never been so busy; I have never felt so fulfilled. With so much to look forward to, my last waking thought each day is to thank my donor for giving me that second chance to live my life---this time where work is only one small part of it.

Marika Chalupa
February, 1998

Jim continues...

The above story is very special, not only because of the long term almost coincidental relationship that spanned almost two decades, but having the transplant experience in common, it was a very natural outgrowth to be able to "mentor" Marika in this return to the workplace. I had originally hired Marika into a technical support role in Albany, NY over eighteen years prior, where she worked on my team for about eight years before moving on to other parts of the country. Marika "re-discovered" her former boss (as she calls meÉ) while searching for information on immunosuppressant medications on the internet many years after our Albany experience together. "Could this be the same Jim Gleason I once knew up in Albany? But what would he have anything to do with transplants?" she found herself asking.

The second uniqueness was when the hiring team called me as not only a member of their personal networking team over just as many years, but in my role as a consultant in the Recruiting & Staffing function of our company. I was called upon to first act as a reference to this applicant, Marika, but further to address their concerns about hiring a transplant recipient back into their workforce. There are many misconceptions and misinformation in the public and especially in the workplace. It was very interesting to be able to give them not only words of supporting reference, but to provide an education at the same time. Marika had proven her abilities through the volunteer work we had been involved with together, so my statements were weighted by the evidence of accomplishment I could relate from personal contact with her. Further, their concerns about the transplant worker concept were alleviated by the example of my own successful return to productive roles within our company over the three years past.

At a recent support group meeting where Marika appeared on a panel discussing their experiences with returning to work after transplant, several common questions were raised that deserve answering here. Remember, as a member of the Recruiting & Staffing function, I now can speak from both sides of the picture. What does the transplant recipient who may have been out of work for an extended period (many years in Marika's case, as an example) say when asked about the lapse in employment history as part of a job interview? Even though it may be illegal for a potential employer to ask about an applicant's medical history, the question might still come up. In refusing to answer, does one jeopardize one's chances of employment by omission? What comes out about your transplant story should be up to you volunteering it, if you choose to do so. An effective way of responding is to just say you had chosen to take time off for personal development or to address family needs, that now you were ready and able to re-enter the job market and resume full time employment. Maybe that inherited money has run out and you need to be gainfully employed again? A medical exam and history can only come after the job offer has been made and accepted, and thus cannot be a reason to refuse employment, at least here in the US.

The time between transplant and re-employment can be used to gain added training in new areas of career interests. State and federal agencies offer free training - be sure to check into it. In my own case this "sabbatical" gave me opportunity to become self-trained in the new field of the internet, a natural for someone who works in the computer field and PC support management. This time was when this new technology was just catching on, so I came back into the workplace even stronger than when I had left it. The internet is yet another "playing field" leveler, with all the opportunities it offers anyone today to start their own business right from the home, even with an inexpensive used PC as the money investment along with the time one has in the months of early recovery. A "can do" attitude plays a big role in such success, but don't get caught up in any of the many "get rich quick" schemes that fill the cyberspace air waves.

Another major issue is the common problems with "memory loss" after surgery. While there is little agreement as to the cause of such lapses, most transplant programs don't seem to recognize this as a big concern, especially in light of the magnitude of the transplant itself. But I can attest to both my own personal frustration as well as so many others who have shared their own difficulties with this issue. It's one thing to be embarrassed at not being able to recall the name of a close friend as you encounter them in the workplace. It is much more critical when your very job depends on that memory - such as a programmer who is trying to code a program or resolve user problems with remembered facts. In such cases this can force you into a true "handicapped" status just when you need the pay and benefits to cover the long term costs of follow-up care and life long medications. Today, three years out, such costs have settled down to an average of about $1,500 per month, lessened considerably from the early months post transplant. In my case the insurance benefits of constant employment have protected us from any major financial impact or family upset. I wish others could be so fortunate. Simple "tricks" can help overcome this memory loss, such as constant and disciplined use of a day planner to record notes and schedules throughout the workday and home life. There are some ways to address the roots of such loss, such as checking your magnesium and ammonia levels, taking corrective measures if these are found to be outside desired ranges. Common immune suppressant medications like Neoral and Prograf are known to have such side effects which can easily be countered with vitamin supplements under direction of your transplant team. A good resource to share other's experiences with these and other transplant related issues, such as re-employment, can be found on the Transplant Newsgroup. Directions for subscribing to this free service can be found on the TRANSWEB.ORG web site under resources. Here regular communication between over 500 transplant related people addresses such issues, and you are welcome to post your own questions, concerns and stories.

The work place, especially in a large facility like the one I enjoy at Unisys, can easily be a means to maintain regular exercise. A small group of supporters helped me maintain a daily discipline of walking about 2 to 3 miles each lunch hour - outside in the nice weather, multiple times around the halls inside when it got too cold or wet to go out. We would enjoy nice conversation while maintaining a reasonably challenging 3 MPH walking pace.

Another often overlooked resource here included the nurses office where my own special "cheerleaders" - Nancy and Kaye - provided regular blood pressure checks to supplement my own amateur checks. These wonderful nurses were often more helpful than many doctors, both in the professionalism and detailed medical knowledge, often doing extensive research on my concerns and symptoms. Then there was their ease of access (no appointment needed), freedom from any fees, personal interest in my welfare and progress, as well as daily upbeat support they so cheerfully gave. A year after I returned to work, a fellow employee was felled by a heart attack at work, taken off for surgery, and shortly thereafter, his own heart transplant. After some very difficult recovery period, he joined me back at work and we had our own very special fraternity. Imagine the fun when we both went to that nurses' office to hug them (last they had seem him was on a stretcher being wheeled out to the ambulance), pointing out with much glee how unique their situation was. They were being embraced by not one, but two guys simultaneously, who had new hearts inside them. Oh how we laughed together.

I might also point out that there was also a full equipment exercise facility at work I could have signed up for (and some say their HMO would even pay for the very reasonable costs of this gym) - but I never got into that. You really should look into and take advantage of such employer benefits wherever possible.

One thing to watch out for in the workplace, especially in the early months after transplant when the immune system is severely suppressed (to avoid rejection), are the colds around you. Keep a good distance from anyone showing signs of coughing, sneezing, etc. Co-workers were very supportive when I explained my situation and cooperated completely. My wife constantly reminds me still of yet another good practice - that of washing hands regularly. This, of course, is true even outside the workplace, but even more important there.

Unique Story?

Some might argue that mine was a unique situation and would not relate to their own re-employment challenges. I can tell you that I have seen many others repeat my story in their own lives, especially as it relates to getting back to work. Yes, it is unique, but then again, so is every one of our stories. The guiding principles outlined above apply to each case and I firmly believe with the right discipline, attitude and desire, you too can have your own "success" story to add to the two related here as examples. Yes, you may have been disabled or handicapped before the transplant, but you will - happily - have to re-qualify with different reasons afterwards. One incident that really brought this home to me was when I had just completed that all too familiar medical history form before taking the annual stress test that was part of the follow-up regimen. I had checked off all the usual boxes especially those relating to my heart history. Imagine my surprise when the nurse in reviewing that form "corrected" my responses, pointing out that they were relative to my "old heart" and now that I had a "new one" my answers had to be based on this one. Wow, what a new way of thinking about myself post transplant! It sure does change your frame of reference, opening up the mind to many new possibilities, especially as it relates to employment.

In closing, I pray that you too may live many years and accomplish whatever goals, employment or otherwise, you may set for yourself. If my story inspires you to set and accomplish you own dreams in this new life we share, I will be most thankful. Knowing you have such possibilities is already winning half the battle.

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