My Journey Back to Health

By Richard Reed

The Beginning

Rich B2B

WHAT?!?! This can’t be right. A 10 pound gain in one week? Let me think; had I been eating more than normal? No. Maybe the scale isn’t working correctly. But I had noticed that my clothes seem to be fitting tighter every day over the past few weeks. Why do my ankles seem so big? Why am I so tired? These were a few of my reactions and questions in late 2002. I had been, on average, a 200 pound, non-athletic male in his late 20s. 

I was working many hours and going to school at night, trying to advance myself and provide a better life for my family. I was never afraid of hard work and stayed busy. So, when I first noticed that I was tired all of the time, I figured it was because of everything I was doing and ignored it and kept on going.

Within a month, I had gained 60 pounds. Even my shoes were getting hard to put on. I felt as though I couldn’t take a deep breath either.  I was the type of guy who believed that you didn’t go to the doctor unless you were dying. I got that toughness from my father.  Another week rolled by and another 5 pounds found its way into my body. After a few days of research, I had self-diagnosed myself as having congestive heart failure. I worried about it another few weeks and finally decided to go see a doctor.

The Diagnosis

The doctor ran some routine tests. Right away, there was a red flag. My blood pressure was extremely high. Next, I had to collect my urine for 24 hours and turn it in. My doctor called me and said there must have been a flaw in the test because the protein level was extremely high. So I did the test again. I was at work when I got another call from my doctor. She said that I needed to check myself into the local hospital. WHAT?! WHY? She said it appeared my kidneys were shutting down.

I wasn’t about to check into the hospital. I was 28, never smoked and didn’t drink or do drugs. My first feeling was anger. How could my kidneys be bad? I am Superman; I can’t be sick. The test MUST be wrong!!!

After many blood tests, I was told to get my kidneys looked at through an ultrasound. They knew that I was flushing out all of my protein through my urine, but didn’t know why. My body went into shock due to no protein and started retaining water, leading to weight gain.  By this time, my shins and ankles were as big as my thighs. I could push my finger an inch into my leg and the hole would stay there for an hour.

My nephrologist ran every test that he could to determine exactly what was wrong. But he still couldn’t say for sure. Now I needed a kidney biopsy to determine the diagnosis. Within one month, I went from never going to the doctor to getting a piece of my kidney removed. While waiting for the biopsy results, they started me on blood pressure meds and a medicine that would help me shed some fluid. The blood pressure meds made me dizzy and sick, and the fluid pill kept me in the bathroom. I have never peed so much. I lost 10 pounds in about 3 days.

About three days before Christmas, my nephrologist called me with the results and said I needed to come in to consult. I had a disease called Focal Segmental Glomerulosclerosis. WHAT? Can you write that down for me please?! He said FSGS. I left his office with a pound of prescriptions. One being a drug called prednisone. Let the long trip through hell begin.

I had never missed work for anything and knew that to support my family I would have to keep working. Thankfully, I had the week off because it was Christmas. I decided not to worry, have a good time, and try to recover from my biopsy and get adjusted to all of the new medications before I had to return to work.

On Christmas Day, my wife told me that she wasn’t happy, she wanted to be young and free again, and that she was leaving.  At that moment, I thought it couldn’t get any worse. I had no idea how bad it would get. My fight to live again would be a long one. I focused in on taking care of my son, Austin. He was my number one priority!

Living with Kidney Disease

I lost almost all of the water weight that I had gained. It felt good to fit back into my clothes again. Little did I know the prednisone would help me gain it all back. I was on 80mgs of prednisone per day, along with my other meds. After some months, I ballooned to about 270+ pounds, my face was as big as the moon, and I was experiencing side effects that I never saw coming. I was moody, sad, sick, mad, and felt like I was dying. After a few years on all of these meds, I was thirsty all the time. I could drink a gallon of water and still be thirsty. Now what was wrong? Steroid induced sugar diabetes! Two shots of insulin and four more pills a day. My blood sugar was 373. My son got to play nurse and give me shots. We tried to make the best of it.

After that, I noticed that I was feeling depressed and overwhelmed by everything. I felt like crying all the time. Thanks to the prednisone, depression was taking over. Great, even more pills to take. I was on prednisone for 5+ years. Finally, I asked my doctor what my next 10 years looked like and he told me to try and live the best I could and that he didn’t see me living past my 30s. This was UNACCEPTABLE!!!!  I was going to raise Austin until he was a grown man and NOTHING was going to stop me from that. The search for a new nephrologist began. I didn’t just want any doctor, I wanted a TOP GUN! After months of phone calls, research, and studying, I found the one; we will call him Dr. C for now.

I have to travel two hours from my home to see the doctor but I would travel around the globe if necessary. He seemed to understand what I was going through. Better yet, he had a plan for my future.  First thing, wean me off of the prednisone! I had to try different ones and my gums were so swollen they just about grew out of my mouth due to using cyclosporene. I also got skin cancer and had a large portion of my lower lip removed as well. But, my health started improving! I was feeling better and lost about 30 pounds.  Dr. C gave me hope again.

Turning the Corner

I asked Dr. C what I could do to help myself. He said exercise and eating healthy. I joined the YMCA, where I started lifting weights. While going to the Y, I met many new people, including my future wife, Dawn.  I was feeling better, but my health was on a plateau. I wasn’t getting any worse, but I wasn’t getting any better either. Then one day Dawn suggested we join a local running club. I wasn’t at all thrilled about that but figured I would go and show her support. We had to run three miles that late April Saturday in 2010. I was behind practically everyone in the group. The same day, we ran a 5K. I had never even heard of a 5K. Tired and embarrassed was an understatement. After a few weeks, Dawn mentioned that the running group was training for a marathon. I asked her how many miles? She told me it was 26.2. I thought that was the DUMBEST thing I had ever heard! I was hoping Dawn would soon get tired of running and we could quit the group.

I don’t know how it happened, but after about eight weeks of running, I was addicted. I was feeling better than I had in a very long time. I was losing weight and my blood pressure was falling. I then committed to run a half marathon in September at Virginia Beach. Two months later, I ran a full marathon in Richmond, Virginia. 

I planned my next race, which was the Hatfield & McCoy Marathon that ran into West Virginia and Kentucky.  The week before that race, I suffered a devastating loss when my father died. He had planned on being there to see me run. I didn’t want to stay home, but I didn’t want to run either. My dad wouldn’t want me to quit or give up, so I went and ran it in his honor with his picture on my race bib.

By the end of 2011, I was biking as well as running. I was also approached by the CEO of the local YMCA, who, after seeing me running and biking around town, wanted to know if I had ever considered triathlons. I told him I didn’t know how to swim, and he offered to give me lessons.

Feeling Better Than Ever

Now I was swimming, biking, and running. I was down to 178 pounds. My blood pressure was normal and my kidneys showed normal kidney function! Dr. C told me that I may be in remission! This was the greatest news that I had heard in a very long time. Dawn opened a door to me through running and saved my life in the process.

I am off all of the kidney meds and I am taking 3 pills for fluid and blood pressure. At one point, I was on approximately 32 pills per day. My goal is to get off all of the meds.

My personal life has also been wonderful. I married Dawn—during a race! We thought it was very fitting. I completed an Iron Triathlon, I volunteer at the Y and yes, I continue to exercise regularly.

In the years since I was first diagnosed I have learned to truly live! Thanks to God, my family, and my friends. To all those who think they can’t take those first steps to living a healthier life, have faith and never give up! I have had to walk through some very dark days, but I was determined and I kept fighting. I have been blessed to have the light shine on my face again. And if one day, the dark days try to find me again, they will have to try and catch me, because I will be running.

For Richard’s fitness tips, check back here next week!

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9 Responses to My Journey Back to Health

  1. Ann says:

    Wow, that is incredible. Thank you so much for sharing this. So glad you are back at it. It is amazing how our bodies can come back from incredible adversity.

  2. Juliet says:

    I am happy For You

  3. Caregiver says:

    What a beautiful story! Thanks for sharing. My son was diagnosed in his early 20s in 2009 and is still battling now. This gives me hope and I will be sure to share it with him as well. Keep pushing. You are awesome!

  4. Donna Day says:

    Thank you what an inspiration

  5. Richard Reed, Jr. says:

    NEVER give up hope!

  6. Deanette says:

    My son, who is 24, diagnosed with FSGS & protienuria when he was 21. 290#, one kidney working at 25%. He was told by his nephrologist’s physician assistant that if he didn’t make some changes he would be on dialysis 3x weekly or have a stroke and if he didn’t follow directions he would not get put on the transplant list. I think the message sunk in. Thank God. I have also shared your story with him. Thank you for sharing your story and I wish you every continued success.

  7. Richard Reed, Jr. says:

    Update: I ran The Blue Ridge Double Marathon (52.4 Miles) on 4/20/13 and biked with Bo Jackson on the Bo Bike Bama tornado relief in Alabama on 4/27/13. Keeping active, staying hydrated, and keeping a close eye on my health. Looking forward to a Kidney Walk!

  8. Reisa says:

    Thank you. You are brave and strong. I was really sick too and thought my husband would want out but he stuck with me all the way. I am sorry about your wife but I guess God had someone better planned. And thank you for not giving up or thinking negative at all..good job !!

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