- Joined
- Feb 14, 2015
- Messages
- 216
Hey guys, been a long time since I've posted anything but I wanted to tell my story of road to kidney failure.
I'm 41 years old and was a competitive bodybuilder (as some of you may remember). I competed at 230lbs and won the super heavyweight weight class at my last three shows. I haven't competed since November, 2016. I had blookwork done about a month after that show and all was pretty normal. GFR was 70, Creatinine was 1.25 and other values within normal or just off of normal. That was my last blookwork until this year.
In January of this year, I began peeing blood. Not bright red, but kind of a copper color. My ex-wife is a nurse so I told her. She thought it was a UTI and gave me some Cipro. I took it for a while and nothing changed. No other symptoms so I wasn't too worried. Shortly after that began, I noticed I would get bad cramping in my calves when I did cardio. Nothing that was disabling and I fought through it and just kept on. Around that same time, I noticed my endurance while lifting was getting worse. I would get out of breath easier, took me longer to recover between sets and just felt tired. This went on for about a month or so. Then after being on my feet all day coaching my son's baseball team, I noticed when I got home my feet and ankles were swollen bad. Really bad.
I finally got blookwork done. My GFR came back at 33, Creatinine was 2.2 and some other values were off. My hemoglobin was low, red blood cells low, hematocrit low, protein in urine high, blood protein levels very low, albumin very low. I went to my doctor and had some tests done, nothing of significance other than bloodwork. I started a renal diet. Low sodium, low potassium, low protein and had to limit fluid intake.
Then about a month later, it got worse. I woke up and my stomach was so swollen. My penis was even swollen. It looked deformed. I was admitted to the hospital for four days. My albumin was critically low so I had to be transfused. GFR in hospital held at 35.
Since then, I've been following up with a nephrologist. As time went on, my kidneys have worsened until about two months ago, I reached the point of having the diagnosis of kidney failure. Currently, my GFR is 10, creatinine is 7, hemoglobin is 9.5, phosphorus is 6, red blood cells 3.5, hematocrit 29, BUN 53. Anyone that known normal values knows these numbers or horrible. My symptoms have gotten so bad. I can barely walk up the stairs without being winded. My BP is out of control and I'm on three different meds and it's still not controlled. On the meds, my normal BP is in the 130s on average during the day, but at night for some reason, it has drastic swings. It goes from 120s to 170s in the matter of a half hour by doing nothing but sitting. It's scary as hell seeing a BP that high. It reached 188/110 a few times. The first time, I went to the hospital I was so scared. I'm tired all the time and can't do much of anything. It's really depressing. I've lost 50lbs, mostly lean tissue and am a shell of my former self. In addition to the tons of meds I'm on, I'm on Mycophenolate (an immunosuppressant) as I couldn't take the side effects of Prednisone. Sadly, it's not working to slow the progress. I also get bi-weekly shots of EPO to try and get hemoglobin up. It works temporarily but then goes back down. I get so out of breath because I don't transport enough oxygen throughout my body. The other day I was putting something together I bought my boys for Christmas and just doing that I had to take three breaks because I was so out of breath. I was kneeling and screwing in screws. That was all it took.
I have been placed on the transplant list and am still in the preliminary stages of that. It's a pretty long process unfortunately and you can't even begin process until GFR is under 20. I see my nephrologist on Monday to discuss dialysis options. In the matter of a few months, my GFR went from 33 (stage 3 kidney disease) to 10 (stage 5 renal failure). I've been compliant with my diet to the point of obsession (being a competitive bodybuilder for years made that fairly easy), compliant with meds and nothing has helped. The goal was to try to just maintain stage 3 and be alright. My kidneys had other plans.
I tell you this as another illustration of making sure you get bloodwork done regularly. I can't help but wonder had I gotten bloodwork done sooner, I could have seen a slower decline and perhaps changed things sooner to slow the progression. There is a real chance I won't make it to 50 years old. Based on what I've read and have been told, once you start dialysis, the average life is 6-7 years if you don't receive a new kidney during that time.
Any positive thoughts and vibes you can send my way is appreciated. I'm having a very hard time both physically and emotionally right now.
I'm 41 years old and was a competitive bodybuilder (as some of you may remember). I competed at 230lbs and won the super heavyweight weight class at my last three shows. I haven't competed since November, 2016. I had blookwork done about a month after that show and all was pretty normal. GFR was 70, Creatinine was 1.25 and other values within normal or just off of normal. That was my last blookwork until this year.
In January of this year, I began peeing blood. Not bright red, but kind of a copper color. My ex-wife is a nurse so I told her. She thought it was a UTI and gave me some Cipro. I took it for a while and nothing changed. No other symptoms so I wasn't too worried. Shortly after that began, I noticed I would get bad cramping in my calves when I did cardio. Nothing that was disabling and I fought through it and just kept on. Around that same time, I noticed my endurance while lifting was getting worse. I would get out of breath easier, took me longer to recover between sets and just felt tired. This went on for about a month or so. Then after being on my feet all day coaching my son's baseball team, I noticed when I got home my feet and ankles were swollen bad. Really bad.
I finally got blookwork done. My GFR came back at 33, Creatinine was 2.2 and some other values were off. My hemoglobin was low, red blood cells low, hematocrit low, protein in urine high, blood protein levels very low, albumin very low. I went to my doctor and had some tests done, nothing of significance other than bloodwork. I started a renal diet. Low sodium, low potassium, low protein and had to limit fluid intake.
Then about a month later, it got worse. I woke up and my stomach was so swollen. My penis was even swollen. It looked deformed. I was admitted to the hospital for four days. My albumin was critically low so I had to be transfused. GFR in hospital held at 35.
Since then, I've been following up with a nephrologist. As time went on, my kidneys have worsened until about two months ago, I reached the point of having the diagnosis of kidney failure. Currently, my GFR is 10, creatinine is 7, hemoglobin is 9.5, phosphorus is 6, red blood cells 3.5, hematocrit 29, BUN 53. Anyone that known normal values knows these numbers or horrible. My symptoms have gotten so bad. I can barely walk up the stairs without being winded. My BP is out of control and I'm on three different meds and it's still not controlled. On the meds, my normal BP is in the 130s on average during the day, but at night for some reason, it has drastic swings. It goes from 120s to 170s in the matter of a half hour by doing nothing but sitting. It's scary as hell seeing a BP that high. It reached 188/110 a few times. The first time, I went to the hospital I was so scared. I'm tired all the time and can't do much of anything. It's really depressing. I've lost 50lbs, mostly lean tissue and am a shell of my former self. In addition to the tons of meds I'm on, I'm on Mycophenolate (an immunosuppressant) as I couldn't take the side effects of Prednisone. Sadly, it's not working to slow the progress. I also get bi-weekly shots of EPO to try and get hemoglobin up. It works temporarily but then goes back down. I get so out of breath because I don't transport enough oxygen throughout my body. The other day I was putting something together I bought my boys for Christmas and just doing that I had to take three breaks because I was so out of breath. I was kneeling and screwing in screws. That was all it took.
I have been placed on the transplant list and am still in the preliminary stages of that. It's a pretty long process unfortunately and you can't even begin process until GFR is under 20. I see my nephrologist on Monday to discuss dialysis options. In the matter of a few months, my GFR went from 33 (stage 3 kidney disease) to 10 (stage 5 renal failure). I've been compliant with my diet to the point of obsession (being a competitive bodybuilder for years made that fairly easy), compliant with meds and nothing has helped. The goal was to try to just maintain stage 3 and be alright. My kidneys had other plans.
I tell you this as another illustration of making sure you get bloodwork done regularly. I can't help but wonder had I gotten bloodwork done sooner, I could have seen a slower decline and perhaps changed things sooner to slow the progression. There is a real chance I won't make it to 50 years old. Based on what I've read and have been told, once you start dialysis, the average life is 6-7 years if you don't receive a new kidney during that time.
Any positive thoughts and vibes you can send my way is appreciated. I'm having a very hard time both physically and emotionally right now.