Coping With Renal Failure

My name is Terry, I was born in 1962, adopted six weeks after birth. Not too long after I started having problems, wasn’t developing normally. In and out of the hospital, I was diagnosed after my kidneys were already destroyed at the age of 6. I had 45% total function of both kidneys until they finally failed at age 14.

In 1976 I had shunts put in both wrists, then both kidneys removed with complications, placed on dialysis every other day for 6-8 hours then in came an angel looking out for me in Sept of 1976.

The first years of my life were spent in and out of the hospital since 6 months of age. Test after test, 3 exploratory surgeries later only to find nothing could do other than wait for final failure. Growing up tired and sick was hard. In and out of the hospital took a toll not only on me but my family as well.

It was a slow process until the day came I could not understand why the doctors wouldn’t help me. I asked my mom, why- we cried and my parents brought me in for evaluation and it was time- the decision was made, there was no choice.

I was fortunate. I was placed on the transplant list in May of 1976- went through all the necessary surgeries, then waited while on dialysis.

Life before transplant was hard, life after transplant was even harder. Do not get me wrong, thank God for the transplant, my story revolves around the emotional aspect of after the transplant.

I was told to not expect children in my future. Unknown effects/side effects of medications on a fetus were not known then. I was 14 years old when I was told this. My dream of becoming a mother one day were dashed. I learned to live with the fact that I should never have children. It was a hard pill to swallow, but I swallowed it.

Life after the transplant was tough. We had moved to a different town and I had to start all over again. Children can be extremely cruel, I was teased horribly and endlessly because of my looks. Sticks and stones will break your bones but words will never hurt you is a crock. I would have rather had a rock or two thrown at me than the emotional trama. Bruises and bones heal- emotional upset takes years to recover if at all. The quick weight gain-bloated face, the bloated stomach, skinny arms and skinny legs. Being made fun of so terribly took a lifetime toll on my self esteem.

Even becoming Kidney Poster Girl for 2 years in a row, for the regional Kidney Foundation, the attention of TV, celebrities, newspaper articles- support of Dr. N. and the hospital support staff, was of little consolation.

Unlike now where kids in school are being taught respect and held accountable for bullying/teasing, then it was quite the opposite. I was teased on the bus going to school, teased in the classroom and teased on the bus going home. Mom did the best she could to console me, she did not know how traumatized I really was. I didn’t tell her all of it. I tried so hard to hold my head high, be strong for them and for myself, smile and laugh,- while all along in the inside I cried and withdrew. The kids and the teasing, I tried to just ‘blow it off,’ pretend I didn’t hear, pretend it didn’t bother me- only to break down crying every so often brought on more teasing.
After a couple of years, the teasing subsided. I decided enough was enough.

By the time I had graduated in 1981 I knew over half my class of 600 by name. My weight and the bloating was finally under control- but scars of the emotional trauma weighed heavily on my soul and took its toll. I graduated at the top of my class, went on to college. Learned even more so that looks are everything. Who you are on the inside is secondary.

I was so defeated within that my life took a terrible turn on New Years Eve of 1983. I was date raped by a “brother” (I became a ‘Little Sister’ to a fraternity). I ended up getting pregnant, he gave me veneral warts (VW) to boot. I was then ousted by the fraternity- they took the ‘brothers’ word over mine. Ended up having an abortion and years of complications because of the VW- predisposition to HPV human papaloma virus-because of lower immune system/vw tooks it toll as well. (2005 had a hysterectomy due to complications).

I met a man a week after the rape who helped me through it ALL- we got married in 1985. My husband at the time had joined the military a year later.
1987 I found out I was pregnant and was scared to death. After consulting with the transplant center, (we were stationed far from home and the doctors I knew) doctor after doctor- my pregnancy was closely monitored.

I had a beautiful baby girl born Sept 1987 after 5 days, yes, you heard it, 5 days of labor! at the age of 25. (military doctor). During that timeframe, my husband had numerous affairs and brought in more complications to my health. Divorce was eminent- Jan 1989, we were threw and I was on my own as a single mother.

I met another man and remarried in Sept 1991. I found out I was pregnant at the age of 32 and had a beautiful little boy in 1994 under strict doctor supervision- my husband eventually adopted my girl in 1998. We divorced in 2000.

You ask, what does this have to do with your story? Everything. I went from one bad relationship to the next. Looked for love in all the wrong places. What I know now that I wish I would have known then? Lots!

I placed my happiness and self esteem on others. I counted on the men to love me and accept me- scars and all. Unfortunately my self esteem was so low that I did not recognize or see that the men I chose were not who I needed them to be. They were abusive, self centered and uncaring. I needed them more than they needed me. I felt unworthy and undeserving of true love or happiness. I wish my parents would have recognized/known then the turmoil and trama I felt within. Took more seriously the emotional aspects not just the physical. Physically after the transplant I was doing GREAT, all was well. Only one slight incident of rejection.

I am telling this story in hopes of helping at least one person. One parent or child….. 1. Do not move if you don’t have too. 2. Look after emotional well being. See a counselor/therapist to help alleviate -especially if there is teasing involved. 3. Know that eventually the bloating does go away, usually takes a couple of years, once meds are cut back, person gets the never ending hunger/weight under control. 4. Be supportive, fully informed -inform others, classmates, teachers- if your child/person talks about it, listen and know they are probably only telling you just the tip of the iceburg of what they hide deeper inside. 5. A lifetime of struggling with looks/self esteem is a lifetime of pain if not handled with care.

I have now remarried for the 3rd time in Dec of 2005, I am almost 45 years old. I have 3 beautiful children, one of which is a stepdaughter. My transplant was almost 31 years ago. (I now struggle with the aging thing, just when ya think you know the rules and figure things out, aging and all that goes with it comes into play.) I am happy I am here to have that. Back in 1962 transplantation was starting to be explored, ‘experimental,’ in 1976 still considered experimental but it had been done but there weren’t too many to reference. Here I am today, still struggling with some health issues, some as a result of the very medications that prevent rejection, but happy to be alive.