Blog Post Three: My Kidney Journey Part I

Kidney Biopsy Selfie, 06/2018

The results of this test would change my life forever

I really don’t even know how to start this. Obviously it would be easiest to start with when the kidneys started going bad but, I feel I need to take you all back to the beginning….back to a day in June during the late 80’s…when I was born. I was born a whopping 11lbs 8oz and before anyone gets uncomfortable, I was a C-section baby. And why is my birth weight important? Well it’s because that large weight stayed with me for my life. Even as a child I was off the scales for the “typical’ weight range. I was always “the big boy.” Always the biggest in my class both by height and weight. I remember in preschool we had this play life sized (For kids that is) telephone booth, it was so cool and I remember I couldn’t fit inside the booth. As I aged I was the kid who couldn’t fit into the chairs that had the attached desks to them. By the time I was in the 5th or 6th grade I was already over 350lbs and I know this because I maxed out all the scales at the doctors offices. This was back in the day when you had the scales that used the weights which all of them topped out at 350lbs so in reality I didn’t know my actual weight for the longest time. Due to me being tall, I didn’t look like I weighted that much. As I aged and got up into the 400’s, people always thought I looked like I weight in the lower 300’s so I at least got that going for me. In my early teens, I was diagnosed with high blood pressure and was put on medications. Unfortunately due to my size, It was near to impossible to monitor my BP correctly because my arms were so big and again at the time, doctors offices had the traditional “one size fits all” blood pressure cuffs so I really didn’t know if my blood pressure was in a healthy range or not. By the time I was in college, I maxed out my weight at 550lbs. I know I flew through that but don’t worry, there will be an entire post (or multiple) of my weight loss journey coming down the pipeline. I just had to give some of the highlights to fully explain my kidney journey. 

Around 2015, I was diagnosed with stage three kidney failure. How did we get there? By accident. On some routine bloodwork, my primary care doctor (PCP) notice elevated protein in my urine. We monitored it for a few months until he officially said it was getting out of his scope of practice so I was referred to a nephrologist (Kidney doctor). I hated this lady at first. Mostly because she treated me like any other doctor and just criticized me about my weight. “You need to lost weight, you’re going to lose your kidneys, you’re going to die.” Blah Blah Blah Blah Blahhhh!!!  I would think to myself, “I’ll have you know lady I’ve lost over 100lbs so get off my back!” Which was true, over a two year course after graduation from my bachelors, I had lost 100lbs which put me right about at 420lbs at the time. Anyway, the nephrologist did some more invasive blood work which revealed me to be in stage three kidney failure. What is stage three? Well instead of using my words I’ll pull it straight from the American Kidney Fund, “The way doctors measure how well your kidneys filter waste from your blood is by the estimated glomerular filtration rate, or eGFR. Your eGFR is a number based on your blood test for creatinine, a waste product in your blood.” Now I don’t remember exactly what my number was at the tie but it was between 30-59 eGFR which indicates stage three. I remember being very freaked out at the time. I turned to my PCP for guidance since the nephrologist was freaking me out. Unfortunately, my PCP did the worst thing he could have possibly done to me and normalized it. He said things like “A lot of people are walking around with stage three kidney failure and don’t even know it” or “It is completely reversible.” Let me be clear, nothing he said was incorrect. The National Kidney Foundation states that over 37 million ADULTS  have some form of kidney failure. Yes that is just adults, not including children. And yes, if you are in stage three it is POSSIBLE to reverse it. For sure not guaranteed but you have a lot more options. However, I took what my PCP said and was like “Okay I will be fine, I don’t need to worry about it. Just keep going on life as normal.” I really wish I could go back in time and slap myself.

So there I was, walking around with stage three kidney failure, gained a little more weight (cause Emily and I were happily in love and packed on some love pounds), acting like nothing was really the matter and I did this for a few years. This takes us up to a very important time, graduation from my masters program which was December 2018. I remember it being a fun time because my father came from Arizona, my sister came from NYC and Emily and I would be walking together even though she technically graduated a semester earlier than me. It was a special time. I remember waking up one of the days around graduation to see my left ankle swollen to double its size. Now some might not think much about it but for me it was a big deal. I have always struggled with low self esteem and hating how I looked. The only things I liked about myself at the time was my eyes, my smile, and my ankles. Weird I know but for being a big guy, my ankles always looked good. Once I was diagnosed with stage three, the nephrologist would say I had a little swelling but I’d never notice it because my ankles still looked good. I think at that point the Nephrologist put me on a low dose of Lasixs to help keep the swelling in check. Again it was nothing I really noticed until that morning in December 2018. My leg was SOILD and I mean if you poked my left leg anywhere it was solid as a rock, no give at all. I remember calling the nephrologist freaking out. She put me on this intensive dose of Lasixs which helps treat fluid retention. I was visiting my step father in Michigan for Christmas after graduation and I remember being so scared to go. Thankfully, the treatment worked. I was able to get the fluid off. If I remember right I think I dropped over 15lbs of water wight within a few days. After the intensive treatment, my Lasix does was bumped up higher. After that I went back to normal, not really changing anything just taking extra Lasixs If I needed to. What I really didn’t comprehend at the time is Lasixs are very damaging to your kidneys. It puts them through a high amount of stress which can do damage. Over the next few months nothing really changed, in fact the blood work got worse. Worse enough that the Nephrologist ordered a kidney biopsy to be done. Kidney biopsies are the ultimate revealer. It gives them everything and the doctors can tell exactly how your kidneys are working. Now she had been wanting to do one of thee for a while but due to my weight, it was to risky. Unfortunately now we had gotten to the point where we had to take the risk. In June 2018, I went in for the biopsy which explains the lovely selfie attached to this blog post. I remember being in the hospital with Emily sitting right next to me. I remember being scared. Hospitals scare me anyway but this one was different. I was also worried they wouldn’t be able to get good samples due to my weight. The procedure went fine but we wouldn’t know if the samples were good for a couple of weeks so now we waited. 

I will never forget the day I got the results back from my kidney biopsy. I remember it being a sunny day outside and for some reason, my dad and step mom were in the state and came with Emily and I to the appointment. They currently live in Arizona so it was a big deal they were there. When the doctor walked in I could feel my stomach drop. She was not her normal peppy self, something was off. She engaged in some small talk and commented on the fact I had so many people in the room with me but then she took a deep breath and sat down, She started to explain the results and I already felt myself having an out of body experience. This wasn’t my life, this wasn’t happening to me. I remember her saying that my kidneys were 75% scarred which translated to they are 75% dead. With that percentage of scarring there was no chance for recovery. She looked at me and said “You will be on dialysis unless you can drop the weight and get a kidney transplant.” That was it, my vision blurred, my hearing felt like I was underwater, I remember Tracy asking questions. She was always action/results oriented which I always appreciated that about her. She jumps right into planning mode asking the question and getting lists going. I remember I could not even look at Emily. I felt in that moment she would leave me because why would you stay with a person doomed to die (That was my thought in the moment)? What I remember most is the look in my fathers eyes. His breathing was intense yet slowed, his eyes were wide yet focused. I could see that his brain was doing the same thing mine was, taking in all of this information but couldn’t process it. Even though he never said it, the look I got from him said “I’m going to have to burry my son.” The doctor kept talking for a while longer but nothing else was able to enter my head. We all got up to leave the doctor, Emily and Tracy walked out first. As I started walking out my father grabbed me and squared my shoulder up with his. He put his hands firmly on my shoulders, and stared in my eyes. I collapsed into his arms crying harder than I can remember. He held me close saying “Its going to be okay.” I’m not sure how long we were in that room. Eventually we both walked out, my father still supporting me. He walked with me all the way out the front of the building. We hugged and said our goodbyes for the moment which just left Emily and I. I finally had to look at her, I finally had to talk to her. Well really we didn’t talk, just collapsed into each other crying. I remember we sat in the car for a while but I couldn’t for the life of me tell you what we talked about. I remember studying her facial features, looking at her swollen eyes and thinking to myself that I caused this pain which I absolutely did. You’d think this would be the low point in the story but that is not the case. The low point still has yet to come.

To be continued……