I first got sick when I was 14 years old. I'm 28 now. I started with sinus infections, ear infections and all other kinds of infections. The doctor's didn't know what was happening. I was getting edema in my legs, which is water retention in my legs. My legs looked like sausages. When I would wear shoes and socks, they would leave deep indentations in my ankles.
The doctor's started testing me for immunodificieny diseases, like Lupis and such. I was even tested for HIV. Kind of ridiculous for me, as I was still a virgin and had never had any sort of sexual contact, but they had to rule it out. And I guess it isn't so absurd considering the times we live in.
They finally figured out that I had a kidney disease called Membraneous Glomerilio Nephritis. Basically, my kidneys were spilling protein through my urine instead of sending it throughout my body like they should have. They decided to start me on drug therapy called Prednisone. Anyone who has been on this for any length of time knows that this drug sucks. It makes you crazy, hungry, fat and depressed. And even worse was that in my case, it was ineffectual in stopping the disease.
So, on to the next step. This is where we started Cytoxin, a chemotherapy drug. This was a very intense drug that required me to sit a room hooked up to an IV drip for 7 hours. Since this was a chemo drug, I did lose some hair, but not enough that anyone other than me could notice. This was nice since I was also gaining pound by the minute and I don't know if my emotions could handle losing my hair too. It was a crazy experience. I was driven to Ventura by my mom to a clinic ran by doctors from UCLA. They were incredible. They would hook me up and I'd bring movies and food down for the day. We did this once a month. Of course the food was not good as I was on a no sodium diet since my kidneys didn't filter correctly. The one bright spot was that they would let me leave early if I promised to drink a bunch of water. This way I could go back home and still play basketball and volleyball. I had to do the Cytoxin for 3 years and slowly but surely, I started getting better. I felt better and everything was looking up. My senior year in high school I asked the doctors if I could stop the treatment. They agreed and I went onto an oral medication called cyclosporine to maintain while I was in remission. If I had managed to stay in remission for 5 years, then pretty much the disease was done.
Well, I lived in my fantasy world where I believed I was all better and when I was 21 years old and in college, my kidneys started acting up again. I had to go on stronger medications and start seeing doctors on a regular basis. The doctor I was seeing didn't give me all of the information I needed to make the wisest choices. Things got really bad when I was having headaches daily and my blood labs were coming back with elevated levels. I was taking ibruprofen daily and multivitamins, which I found out later actually can cause damage to kidneys. He never told me this. Well, just last August, he finally referred me back to UCLA.
Once I was there I found out that I was actually stage 4 kidney failure. Needless to say, I was lost. I never even had heard those words before, but apparently had been in kidney failure for a while. They have since started me back on prednisone and also about 7 other pills I take daily. All with their own wonderful side effects and problems. All I can say is thank God for UCLA, insurance and family. My boyfriend Kevin has been wonderful. We've been going to UCLA once a month since August and he goes with me to every appt and makes sure that I take my pills and eat right. He's a major support as is the rest of my family and friends.
I've basically decided to start this blog to basically help my self. I think writing about what is happening to me and the emotions I'm experiencing will help me deal with the depression that goes along with something like this. And for anyone else out there going through a medical crisis or anything like this, they can maybe find comfort in the fact that they're not alone.
Until next time....
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