I'll start off by letting everyone know that I'm no longer homeless. I'm still living on the beach, but this time in an apartment on the East Coast. I'm also married. I guess you could say I'm stable now. But my life is anything but "normal."
Although I am off the streets, my health has taken a turn for the worse. I have End Stage Renal Disease which means without a kidney transplant I will have to go on dialysis.
Kidney disease is almost a silent disease. Sometimes there are no symptoms until you are in the late stages of kidney failure. By then you are shell-shocked. Even some of the later symptoms can be really vague. Sometimes at that point it's too late to save the kidneys. I knew I had kidney issues. I just didn't know had bad it had progressed.
I've been sick for quite a while. Kidney disease is something I have dealt with my entire life. I'm 37 years old now but I was born with a defect that caused blockages in my ureter. Something that has never been explained to me is that when I was an infant I was very sick but my mother failed to get me adequate medical attention. My mother took me to the doctors a few times but blood was never drawn and they sent me home every time. It wasn't until I was 8 months old that my mother finally took me to Children's Hospital in Seattle where they discovered what was causing me to be so sick.
My left kidney was destroyed and had to be removed. My right kidney was damaged and I needed surgery to repair the obstructions and get my kidney working correctly. I wish I could say that was the end of it and I lived happily ever after, but that wasn't the case. For whatever reason I developed new obstructions and had to have major surgery again when I was 3 and 8 years old. I don't remember much when I was a toddler, but I remember how sick I was when I was 8 and it sucked.
After my last surgery when I was 8 years old I finally seemed to turn the corner. For years I seemed to be doing much better. Serum creatine levels are something a doctor looks at to evaluate kidney function. Normal levels are anywhere from .6 - 1.2 deciliters in a healthy person. When I was 13 years old my creatine was 1.3. Just to put that into perspective, when I was 8 years old and very sick my creatine levels were over 9.
As I've aged, my creatine has slowly risen. In my early 20's my creatine levels were around 1.8. That's a bit above normal but not at all that alarming. When I reached 30 my creatine hovered around 2. My creatine maintained in the low 2's until about 4 years ago. Since then my creatine has risen considerably. Last summer I was at 4.2. Now it's 6.9.
In December I was admitted to the hospital for an unrelated condition and found out my creatine had risen to 5.5. This isn't good. This hospital was a small community hospital. I met with a nephrologist (kidney doctor) and a urologist. They did an ultrasound and found that I had another obstruction causing fluid to back up into my kidney. My condition is called Hydronephrosis.
The doctors at this hospital wanted to do surgery right away to try and save my kidney. I wanted a second opinion just to make sure I was going to get the best treatment possible. I'm glad I decided to get that second opinion. It turned out the surgery was unnecessary. It would have probably made my condition worse.
A few days after Christmas I started feeling really sick again so I went to the ER and was admitted to the hospital. During my stay, a team of doctors examined me and ran more tests and determined that the surgery was unnecessary and might even do more harm than good at this point. In layman's terms, my kidney was so damaged from this chronic obstruction that relieving the obstruction would not save my kidney, but probably put me on dialysis even sooner.
My creatine dropped down a bit to 5.1 at this point so the doctors discharged me. Since then I have had several follow-up appointments with different doctors. All of my doctors agree that without a transplant I will need dialysis at some point. It all depends on how fast this progresses.
When the kidneys go bad so many other things go wrong. One complication of CKD is anemia. A normal adult male should have a hemoglobin range of 13.5 - 17.5 g/dL. Mine in late December was 7.9. I was very pale and weak as you can see from the picture above. I was always tired and couldn't hardly walk up a single flight of stairs. In January I started getting Aranesp shots. The Aranesp shots help do the job that the kidney is failing to do and that is to tell my body to make more red blood cells. These shots are very expensive. They cost several hundred dollars a vile. The shot is given once a week until the hemoglobin gets back into a safe range. My wife is trained to give me the injections so I don't have to make a trip to the doctors every week.
That's were I stand now. My kidney function isn't getting better. It's only a matter of time before I will have to go on dialysis if I don't get a transplant. I went to my renal education appointment and I think I'm going to go with peritoneal dialysis. It seems to be better tolerated. I'm not sure how I'm going to be able to travel or anything else yet but hopefully if it comes down to it I won't have to be on it for long. It's treatments that I have to do at home 4 times a day but I guess you have to choose between the lesser of two evils.
For now all I can do is take things one day at a time. I'm optimistic despite my health challenges.
When the kidneys go bad so many other things go wrong. One complication of CKD is anemia. A normal adult male should have a hemoglobin range of 13.5 - 17.5 g/dL. Mine in late December was 7.9. I was very pale and weak as you can see from the picture above. I was always tired and couldn't hardly walk up a single flight of stairs. In January I started getting Aranesp shots. The Aranesp shots help do the job that the kidney is failing to do and that is to tell my body to make more red blood cells. These shots are very expensive. They cost several hundred dollars a vile. The shot is given once a week until the hemoglobin gets back into a safe range. My wife is trained to give me the injections so I don't have to make a trip to the doctors every week.
That's were I stand now. My kidney function isn't getting better. It's only a matter of time before I will have to go on dialysis if I don't get a transplant. I went to my renal education appointment and I think I'm going to go with peritoneal dialysis. It seems to be better tolerated. I'm not sure how I'm going to be able to travel or anything else yet but hopefully if it comes down to it I won't have to be on it for long. It's treatments that I have to do at home 4 times a day but I guess you have to choose between the lesser of two evils.
For now all I can do is take things one day at a time. I'm optimistic despite my health challenges.
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