By Brenda Dyson & Paul McGinnis, MD

It has been said that the only thing constant is change. Transplantation is an incredible change that will affect every facet of your life. Just as your current renal replacement therapy has wide-ranging implications for you now, so will transplantation in your future. Those of you who already have your transplants will experience some of these changes.

As the title of this feature “Mind, Body and Soul” suggests, one of the first things to consider are the changes that will occur in your mind. Mentally adjusting to this new way of life can be difficult. While before you had to restrict fluids and the intake of certain items, these restrictions are now diminished. In fact, for some it is difficult to actually consume the amount of fluids needed. With this reduction in restrictions you will experience a new sense of freedom, freedom from a specific schedule of dialysis and freedom from the constant contact with your healthcare providers. The important thing to remember is that this freedom does have its limits. There are still dietary restrictions you need to maintain. Three things you should continue to monitor are your sodium, caloric intake and cholesterol. Sodium intake should be limited because of the increased retention of fluids caused by steroids, that you may be taking. This may cause increased work for your new kidney in order to eliminate the excess sodium. You should also restrict caloric intake because these same steroids will also interfere with your body’s ability to control blood sugar and increase your risk for diabetes. Weight gain is often a result of this disturbance of glucose control. Cholesterol is the leading cause of strokes and heart attacks in the general population and is certainly a leading cause of morbidity and mortality in the dialysis population. As you are now living longer due to the benefits of transplantation, such problems increase in their importance. As you will now have less contact with your healthcare providers each visit’s importance increases. The complexity of your care has not changed, therefore, each contact is much more important than before. Should problems arise unexpectedly, decreased contact will mean a longer time before such unexpected complications come to light. For this reason, every clinic visit is important.

You will, in general, feel better post-transplant. Gone will be the constant yo-yo of good days and bad days. The bad times just before and after dialysis will become a distant memory. In fact, there will be a time when thoughts of your illness will not intrude on your conscious mind for days or even weeks. However, during these times, constant adherence with your medications is a must. This is not optional or open for negotiation. Your medications are the key to keeping this freedom and as such, must be given proper respect. Make sure that your medication is always available and protect it from extreme heat or cold. Follow your instructions for taking these medications; they are there for a purpose. Even such things as drinking grapefruit juice can change how your medicine works.

Always keep in mind that transplantation is a treatment not a cure. Transplantation is another form of renal replacement therapy and you need to understand that it still requires some diligence on your part to make it work well. And even with diligence on your part, failure of your transplant may eventually occur. It is not healthy for you to have unrealistic expectations of what transplantation can mean in your life. Although there have been extremely lucky individuals who have had a working transplant for more than 30 years, these people are in the minority.

You may be experiencing changes in your physical appearance due to a transplant. If you already had a transplant, you are certainly aware of one the changes – the surgical scar. Although many people think of it as unsightly, it is probably less obvious than hemodialysis or peritoneal access surgery. For those of you who have not had a transplant, it is usually a mark about six inches in length on the side of your lower abdomen next to your hipbone. Most women can still wear a bikini.

One of the most easily recognized, changes is that of the “moon” face. This is a fullness of the cheeks that is very characteristic of steroid therapy. Also, fat deposits in other areas may develop including on your back at the base of your neck and around your middle and hips. One may notice hirsutism, which is increased hair on the face and body. Increased facial hair is of little consequence to men, however, it can be devastating to feminine self-esteem. Luckily there are products and medications that can offer relief for this condition.

A more long-term problem with your skin is the occurrence of lesions related to sun exposure. Post transplant patients should be, as all people should be, very conscious about exposure to the sun. If untreated, these skin lesions can become cancerous. Sun blocks are available, and for those of you who cannot go without a little color, there is always sunless tanner.

Outdoor activity can be risky when using immunosuppressive drugs due to exposure to insect borne illnesses. Most recent to surface is the West Nile Virus. Other areas to exercise caution due to your immunosuppressed state, are contact with people with viral illnesses such as chicken pox and sexually transmitted diseases (STDs). STDs that are virally based, such as herpes and genital warts, are usually an annoyance in the general population, but for you can be very serious.

Unfortunately, the best ways to maintain good post-transplant health are the same as for anyone, diet and exercise. Neither of these things are easy to accomplish. In the same way that you scheduled your dialysis before, exercise needs to be scheduled as a part of your life. Exercise will enhance the feelings of well-being that you experienced after your transplant. The other half of this equation is, of course, continuing to monitor your diet. Remember, although the restrictions are less, they are still just as important as ever.

After addressing Mind and Body, we are left with the “Soul.” The new freedom and reduction in limitations will open up new possibilities for you. Transplantation was developed as method of rehabilitating the chronic kidney disease (CKD) population. You have been given wonderful new opportunities and a renewed hope for a fulfilling life. Good luck with this second chance (or third).

Brenda Dyson is the Special Studies/Patient Services Coordinator for ESRD Network 8. She serves as President of AAKP, and she is a two-time kidney transplant recipient.

Paul McGinnis, MD is a graduate of the University of Mississippi Medical Center and currently a staff psychiatrist at Mississippi State Hospital. He is a former Board of Directors member of AAKP and a three-time kidney transplant recipient.

This article originally appeared in the September 2004 issue of aakpRENALIFE, Vol. 20, No. 2.

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