Celebrating Health After 17 Years...

Celebrating Health After 17 Years...

My name is Scott Keller. The following is some of what’s to be included in a full story I am writing about my experience with kidney failure from the disease Focal Segmental Glumerial Sclerosis (F.S.G.S.) and the overall positive effects of the life changing experience called Pranayama.

Ages 13-16 I remember leaving for a vacation for Florida when I was thirteen years old. It was all of us on the farm plus my grandparents. They rented a motor home and we drove clear down for some fun in the sun on cocoa beach. I remember that I started feeling odd right after we first started heading out. I remember falling asleep just as we took off down the road in the motor home and then waking up to a dream that terrified me. It involved one of my friends turning into a demon before my very eyes. I thought this was strange to have such a horrible dream when I was so excited for the trip and had only slept for about ten minutes. Then, I started getting a headache…one that lasted for most of the two day trip. I didn’t feel sick, but I didn’t feel like myself either. We resumed our vacation in the sunny Florida weather. After being there for about three days, I noticed that my weight had skyrocketed by ten pounds. I was always weight conscious as a child. I was a little chubby, and being a young teen, this wasn’t helping my self esteem issues. Then I noticed that my calves were very swollen. I got sunburn that day and my grandfather being a doctor assumed that I was having a reaction from that. This kept on for the rest of the two week stay.

After we got home, I was doing homework one evening and realized that my feet were in pain. I took off my shoes and noticed that they were huge. They were swollen to about double the size they should’ve been. The next day my mother took me to see my grandfather at the doctor’s office, and I had a full physical with blood drawn and a urinalysis. The results came back a few days later, and he called and told my mom the news. It appeared that my creatine levels as well as other levels in my blood were abnormal. We had no clue as to what this meant, but he being a doctor had seen these signs before and suspected right away that the kidneys may not be working properly. He made a call that very day to the University of Michigan Hospital in Ann Arbor Michigan. We met with some Nephrologists there, and they suggested that along with more blood work, I get a biopsy of one of my kidneys. A few weeks later the biopsy was done and it showed right away that I had nephritis of the Kidneys. The biopsy was sent off for further testing, and in a few weeks it came back showing that I had Focal Segmental Glumerial Sclerosis (FSGS).

At this point in time, very little was known about this disease. It is still uncommon today, but more people are getting it every year. It is a disease that lies in the blood. It attacks the kidneys by putting excessive protein through them which causes scarring to occur. Eventually, the kidney becomes so scarred that it no longer works properly which is where dialysis comes in. I don’t remember the actual moment that the Nephrologists told me that I needed to go on Dialysis, but I do remember that my mother was doing a large amount of crying. I, being the naïve kid that I was, didn’t understand why she was making such a fuss every time we visited a Doctor. I even told her on a few occasions, “Mom, please this is embarrassing, I will be ok. I just need to finish taking my prednisone pills and I will be ok again.” My labs had been steadily getting worse and I was literally clueless as to what the Doctors had been saying these last few months at these visits. My mother could sense it though. Even before I was told that I needed to start Dialysis, I believe she knew.

I remember getting my fistula surgery on my left arm. This procedure is done for a couple of reasons. First, it creates an area similar to an artery where a large amount of blood can flow. This is required for efficient dialysis. Second, a normal sized vein would rupture with the fifteen gauge needles that are used. After a month of healing, I was ready for dialysis. I remember going to my first hemodialysis treatment like it was yesterday. I still had no clue of what it was all about, and therefore had no worries on my first day. I sat in the chair and watched as the nurse took out the 15 gauge needle. Now I was scared. I had never seen a needle that had that wide of a diameter before. I looked up as she sunk the needle into my fistula. After my first dialysis run, I knew that things would never be the same. The first few years were rough for me, mainly because of the time period. The dialysis machines in the early 1990’s were not as sophisticated as they are now, and patients often left feeling worse than when they went in. After my body adjusted, it became a routine thing. I was 16 years old when I first started, and didn’t notice much of a decline in energy during that time period.

I was on dialysis for a year when I got my first transplant. This transplant was done in June of 1991. The transplant worked inefficiently for 6 weeks until my F.S.G.S. took over it finally and I was back on dialysis once again. I don’t even count those 6 weeks as being off of dialysis because I felt so miserable the whole time that I never felt like I had a working kidney. I had a traumatic experience with my first transplant back in 1991. It made me never want a transplant again. So I continued with dialysis and accepted it as my new lifestyle. (Jump a head to age 31) The last 5 years have been extremely rough as far as my overall health goes. I now had extreme high blood pressure, breathing issues, osteoporosis, extreme fatigue, thyroid problems, and fluid around the heart just to name a few all because of the many years on dialysis.

It was brought to my attention that Johns Hopkins Hospital in Baltimore had made leaps and bounds in transplantation. We contacted them and met with them in July of 2004. They talked about the new methods they used for people like me who are highly sensitized due to previous transplants, blood transfusions and other issues. This means that there are more antibodies in the blood than usual which will fight against any foreign body they come into contact with, including a transplanted organ. Because I had a previous transplant any many transfusions in my life time this far, I was at a high risk for a transplant. Johns Hopkins however was confident that they could significantly reduce the risk of the transplanted kidney rejecting. They could not guarantee that my disease would not return, but had seen good results in eliminating it with a process called plasmapheresis. This procedure would also be done before the transplant regardless to take care of the antibodies that would attack my new kidney.

I thought about it and had a positive feeling. I also knew that my days were numbered and I needed a successful transplant soon. Not to sound bleak, but I had an internal feeling that everyday could well be my last. So my wife Lisa and I both agreed it was all or nothing. It was to be determined that the transplant would be a 6 way transplant. Meaning that 3 people would donate and 3 would receive. Because Lisa could not donate to me, she agreed to donate to one of the other people. Because of this decision, she saved a 60 year old man from going on dialysis. All of us had the operations at the same time and other and a few minor complications, we all did well. The 3 of us that received still have perfectly working kidneys and all 3 that donated said it was the best feeling in the world to make such a difference in someone’s life. All six of us are still close, and see each other when we can. That being said, I found out about 3 weeks after the transplant that my disease had returned to the kidney. I was horrified upon hearing this. However, Johns Hopkins has my ultimate respect for doing what the other hospitals I had ever been too never did. They were determined not to give up on me.

I was prepared to go to war against this disease to save my kidney. After showing some positive results with plasmapheresis, we returned home. Then my protein levels went up again indicating proof of the F.S.G.S. and I had to do a month worth of plasmapheresis. I had a new working kidney but the same attitude on life. I appeared to most people on the outside as being a nice person, but on the inside I was full of rage and anger. I had always been angry that I got this disease in the first place, and had grown up surrounded with negativity on a daily basis. I felt cheated out of life and was on the edge. I would loose it if one thing in my day wasn’t the way I thought it should be. I always assumed that most people were out to mess things up for me, weather it be on purpose or by chance. Lisa once told me that she thought as though there was a war going on over me between good and evil. One day I would show a hint of hope, positivity and determination, then the next I would be bitter, complacent and destructive. I started physical therapy when I was feeling up to it. One of the therapists noticed that my breathing was sometimes shallow and other times erratic. She suggested that I see someone who could help me with this issue, and it would give me more energy and strength. I hadn’t a clue for what I was about to discover.

I met with Renu Sharma one day in January of 2006. I wasn’t usually a person that could sit and listen to anyone that I didn’t feel was of use to me, so I thought I would meet with this woman for 20 minutes. I would breathe differently and then be on my way. I sat with her for 3 hours that day and just listened to all she had to say. It did however feel like it was only 20 minutes. When Renu talks, you feel the urge to listen. That’s one of her gifts. I could have closed of my mind and my heart that day and just got up and walked out, but something internal was keeping me there. Something deep within which kept me from focusing on anything else but what she had to say.

She spoke briefly on the “breath of life” and the positive effects of it. She spoke of terms that I knew nothing about such as “pranayama”, and “Asans”. She then claimed that this deep breathing could cure many diseases and many other issues as well if I took it into my heart and truly believed. She then asked if I would join the pranayama group that was held on Wednesday evenings. I felt that I had nothing to loose at this point. I didn’t know what to expect from the group, but the fact that it was free lead me to believe that it wasn’t being done for profit. I attended and felt out of place at first. There was a chanting of “Om”, yogic stretches, and deep breathing techniques that I found to be rather odd. But the discussion that Renu and her brother Arun spoke of was heartfelt. I wasn’t sure if this was going to be of benefit for me, but I knew that they truly believed in it. So I decided I would come back.

I also met with Renu during the day on occasion as I was not back to work yet. She showed me the way to doing pranayama properly, and with her and Arun doing these classes, I felt that I no longer wanted to miss a single session. I quickly noticed the change in my attitude. I felt more positive than I ever had in my life. I had all these feelings that I never did before, such as wanting to help others in life. I started learning about the spiritualness of pranayama. After doing pranayama twice a day at 45 minutes for a month and a half, I got some interesting news from Johns Hopkins. They informed me that my protein level in my kidney had dropped significantly. They are an institution of medicine, so of course this was credited to the drugs that I was on. I also had a heart murmur and fluid around my heart disappear. The fluid may have been because of the years on dialysis, but the heart murmurs disappearing was a shock to all. I am to this day having successful lab results, and I am feeling better than I ever did in my life. Not just health wise but mind wise. Not that I don’t feel anger wanting to surface sometimes, but it quickly disappears now because something inside tells me to breathe and let it go.

I feel deep in my heart that pranayama has saved me from a path of self destruction. I am back to work, have many new friends, and am living in the light now instead of the dark. I met Renu and Aruns mother Sashi. She comes to every Wednesday class and swears that her children are here for a reason. I also met Anu, their sister, who is also a special person. She teaches pranayama in Chicago. I was fortunate enough to met her at a seminar here in Kalamazoo, and then again at a seminar in Chicago. When Renu, Arun and Anu are speaking at the same place, you can literally feel their positive energy flowing throughout the room. They all have a different approach, but each have the same goal: To help people. There isn’t many things in life for free, especially things that are lifesaving, but seeing people who want nothing more but to help others is inspiring and influencing. I always come to Wednesday evenings, as well as most of the seminars.

The power has always been within, but I thank my extended sisters, brother and mother for showing me how to bring it to the surface for the way to a new life. Renu, Anu, Arun and Sashi, there are no words for the appreciation, love and respect that I have for you in this life and the next.

 

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