A Dialysis Legacy

Renal Business Today asked me to write an article on what it was like to be on dialysis. In my September 20th blog post, “Blink of an Eye,” I talked about my dialysis nurse, Bob Cogley, who had recently passed away and how that inspired me to write the article, “A Dialysis Legacy,” in Bob’s honor. Bob’s family read this at his memorial service and I’m honored to share his legacy with all of you.

A Dialysis Legacy

On our journey to staying healthy, patients cross paths with many doctors, nurses and technicians. Some healthcare professionals become distant memories and others have an everlasting impact on our lives. I have learned from experience to never underestimate the impact a patient may have on their doctor; as well as the impact a doctor can have on their patient.

It took a whole team of doctors to restore me into the healthy woman I am today. I recently lost one of those special individuals, my dialysis nurse. When I received the news that Bob Cogley, my dialysis nurse, passed away, my heart ached. All of the memories of my dialysis days flooded my mind. I stared off into the distance as my mind played one flashback after another.

This news took me back to January of 2002. I was sitting up in a chair in my dark hospital room, with my parents. Four months had gone by in the hospital with constant pain and the unknown of what the next day would bring. I was battling PKD, polycystic kidney disease. With this disease, cysts form on the kidneys and over time deteriorates the function. PKD is one of the most common life threatening genetic diseases. At 10 years old, I became one of the 600,000 Americans and 12.5 million people worldwide affected with this disease. Dialysis and transplantation are the only treatments. There is no cure. My kidneys were functioning 60%, but they could not control the cyst bleeds. My team of doctors at Johns Hopkins knew that I would not survive if they did not make a difficult yet vital decision; to remove my kidneys.

As my parents and I sat in my dark hospital room, we were awaiting a dialysis nurses arrival, Bob Cogley. I saw a crack of light from the door and in walked a man of short stature, bald, glasses and soon I would learn with a heart of gold. I was too tired and weak to really comprehend all he was saying. He visited us to describe what life was going to be like after they performed the bilateral nephrectomy and I entered the world of dialysis. One thing I remember from that day is that he was brutally honest. He didn’t sugar coat anything, but he made it clear that he was going to be there with me every step of the way. Bob was a man of his word.

Dialysis was quite hard on my body. I was fighting so many other things. I had pancreatitis and was fed through a picc line in my arm. I just had a massive surgery where both of my kidneys were removed, and then went right into daily dialysis. Two weeks after my kidneys were removed, I had a congenital anomaly and four bleeding ulcers in my stomach and needed emergency surgery. My body was tired, fighting for its life and enduring the stress dialysis puts on ones body. I am amazed by what our bodies can bear and am quite impressed with what mine has overcome. My dialysis days in the hospital were quite a blur. I would get severe cramps. Most of the time the only way I could get through it was with the help of Benadryl, which would just make me sleep through the treatment.

It felt like the movie ‘Groundhog Day’ as the transport team would cover me up in a white hospital blanket and wheel me down to the dialysis unit. I can still hear the sound of the automatic large white doors opening and envision what the room looks like. I can recall the smell of the dialysis center and vividly hear the sound of the machines. I would look around and be reminded that at 18 years old, I was the youngest patient in the room. Everyone would be lying there, looking lifeless. It wasn’t a pretty sight. I wouldn’t wish it on anyone, but not one of us could complain. We were all fortunate to have a machine that was able to do the job of our kidneys and keep us alive.

How does one remain strong during these times? Where does one find hope? As those dialysis doors swung open, there was one thing that remained constant. Bob, a dedicated and caring nurse, greeted me. When he administered my dialysis treatments, I knew I was in good hands. I trusted him. I felt safe. I knew he really cared. I could confide in him. I could squeeze his hand during difficult times knowing he would do all he could to make the next few hours as comfortable as he could for me. A patient couldn’t ask for anything more.

After several more months passed by in the hospital, I became stable enough to go home. I received dialysis treatments three times a week at a facility outside of the hospital. I occasionally went back in the hospital for various complications. I remember walking into the dialysis center and stepping on the scale to see how much water weight I gained between treatments. I had a strict diet and really had to watch my liquid intake because I didn’t have any kidneys and was unable to pee. I again would glance around at the other patients noticing that I was the youngest enduring this lifestyle.

I am fortunate to say that my dialysis days had a beginning, middle, and an end. I remember that last treatment vividly. I sat in my dialysis chair with hope. Knowing there was a bright future ahead of me. Thankful that I was being giving a second chance at life, thanks to the miracle of transplantation.

I remember the feel and the sound of my dialysis catheter being pulled out of my arm. It was like handcuffs being taken off. I felt like a free woman. I had just received a beautiful healthy kidney and was able to pee for the first time in eight months.

I recently celebrated my 10-year kidney transplant anniversary. The last 10 years have been the best years of my life. I embrace life and live it to the fullest. My kidney donor, parents and doctors played a huge role in keeping me alive and every day I strive to make them proud.

Several years after my transplant, during a routine check-up at Johns Hopkins, I thought I would stop by the dialysis center for the first time since I was discharged. I wanted to see Bob Cogley. Thank him for all he had done for me. This time I stood outside of those white dialysis doors as a healthy, vibrant young woman. I was filled with excitement as those large white doors swung open and I saw Bob. He turned around and looked at me. I was beaming with a huge smile on my face. He didn’t recognize me at first. I said, “Bob, it’s Valen.” His expression at that moment will forever be embedded in my mind. He stood there in disbelief, our eyes welled up with emotion and I can still feel the huge hug we gave each other that day. He kept saying how beautiful I looked. We had been through so much. He had been with me on some of my darkest days. We had come so far.

A few years later, when the author of my biography interviewed Bob, I learned how momentous that day really was. Bob was about to switch careers and take another position outside of dialysis. He wanted to do something different with his life. Bob said, “I was hired and the paperwork was completed.” He said that when he saw my radiant smile that he knew his decision to leave this kind of work was totally wrong. “Moments after seeing her, I knew this is where I belong,” he said. “When I first met her, she was a very sick and scared child. She had so many bloody cysts on her kidneys. I had never encountered a patient who had undergone so much adversity at such a young age. She was looking death in the face. When I saw the beautiful and healthy woman standing before me after her transplant, I realized I had played a small part in her being alive. I realized then and there that I could not do anything else in my professional life, other than dialysis. So I ripped up the paperwork and here I am,” Bob said.

As all of this replayed in my mind, I sat in a daze with tears streaming down my face. It was a lot for me to digest that such a vital part of my medical team is no longer with us. I now smile knowing that I am part of Bob’s legacy; through the amazing care that was given to me and every one of his patients. His dedication and amazing qualities set an example for all caretakers. Once again I am reminded to never underestimate the powerful impact one can make on someone else’s life.

Link to the article on Renal Business Today’s website:

http://www.renalbusiness.com/articles/2012/11/a-dialysis-legacy.aspx

6 Comments

  1. Pam

    I totally enjoyed reading this beautiful story! What a strong person you are. I am in my fifties and just discovered I have PKD so I have been very lucky to have lived a normal life thus far. Your story makes me feel grateful for that. And I vow to also to not let it beat me.

    Reply
    • Valen Keefer

      Hi Pam,
      Wonderful to hear from you. I am really happy to hear that you enjoyed reading this story about Bob. Thankful that you have lived around 50 years without PKD having an impact on your life. It is music to my ears that we can say together…PKD Will Not Beat Me! 🙂

      Reply
  2. Minty Miller

    Valen, What an amazing story, so beautifully written, it made me weep.

    Reply
    • Valen Keefer

      Thank you very much Minty! I’m so lucky to have had Bob on my team of doctor’s and thankful to be able to share his story and legacy with all of you.

      Reply
  3. Tracy

    Valen, Nice to see your blog. I just started reading a couple of your blogs and hope to read all very soon. I think it is very vital for PKD patients to share their stories for so many reasons. I have a million, and am thinking about writing them in a journal before I forget. I made many mistakes after diagnosis at 25 years old. I feel the need to let people know what to watch out for. I too was told by the docs that, “If I was going get a disease, this one is a good one and that most people don’t have problems till 60 or 70.” Pam posted that she just found out at 50. Please Pam, do not ignore this disease, make sure your creatinine is tested at least once a year and learn, learn, learn. After a combination of bad doctors and not knowing much about how this disease progresses, I found myself in total failure. We really need to let people know what to expect. There are so many similar stories and then differences. Education could help so many. This blog helps!

    Reply
    • Valen Keefer

      Hi Tracy,
      Thank you so much for sharing your great advice. I completely agree! Hope you will continue to find this blog enjoyable and helpful. Take good care and I hope you will keep sharing with the readers!

      Reply

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