So, last we left off I was in the competent hands of UCLA doctors. They started me on a grocery list of medications with all kinds of inconvenient side effects (weight gain, acne, depression, unsuppressed hunger, sleeplessness and a host of others) which really sucked, but in the end they were working. The amount of protein being spilled through my urine has gone down from 8.4g to 2.1g or right around there. This is a huge improvement.
This treatment started in August and they started tapering me off of the Prednisone in December. I was on 60mg to begin with, which is a lot. They took me down almost every month about 10 mg, which was making me very happy. I thought, only a few more months and I'll be off of this crap.
Well, this was not to be the case. I took a vacation to England and Ireland with my boyfriend and his family to meet his extended family, as he is originally from England. Due to my kidney disease and the medications I am on, they informed me that I am highly susceptible to blood clots. Well, apparently I sat just a little too long on the 10 hour flight to England. About 4 days into the trip I was having a really difficult time catching my breath. Just walking to the car from the front door had me panting for air. I couldn't catch my breath enough to form words. I was a little worried, but didn't want to go to the doctor in another country, so I managed. When I arrived home 2 weeks later and the symptoms had gotten worse (I now had chest pains going with the shortness of breath) I called my doctor at UCLA and she said, "I don't want to freak you out, but it sounds like you have blood clots in your lungs. You need to get to an ER." Well, away we went. I found out that all you have to say is you have chest pains when you enter the doors of an ER and they take you right away. Just a helpful hint.
So, because of my kidney disease, they can't do a CAT scan with contrast as it might cause more damage. So they did a chest x-ray, which didn't show anything. I then went onto a Doppler study of my legs to see if there were still blood clots in my legs. They were clear. The next step was a VQ scan. I've never done one before. They have you breathe in some radioactive gas and then take pictures of your lungs. Then they inject into an IV some radioactive liquid and take more pictures. These pictures are then laid over each other and they reveal where the blood clots are. I apparently had every blood clot in my leg break off into my lungs because they told me I had multiple pulmonary embolisms in both lungs. A little scary since they told me I was lucky to be alive and that one of them had not blocked an airway completely and I hadn't suffocated. About 20 percent of people die immediately when a blood clot breaks off into the lung. At this point, I'm thinking what the hell can be next?? Well, you get what you ask for. They pumped me full of blood thinners and put me on Coumadin. My father at 55 was on blood thinners. Me, at 28 years of age, should not be. But not many 28 year olds are on any of the other meds I'm on either.
So, since I am on blood thinners, couldn't breathe and basically was in danger of a blood clot moving and killing me, they put me on a month long leave of absence from work. This was a beautiful thing. I slept in, rested, even started cooking a bit. And those that know me, know I don't cook often. Well, I've since returned to work with all kinds of restrictions for my safety. I'm a probation officer at a court ordered boy's camp in the woods. So, needless to say, there are risks involved in my job. And I'm also 30 minutes away by car to any emergency services. So, now I'm a 28 year old on blood thinners and have a medic alert bracelet with all of my many issues printed on the back. Sometimes I think I'm 80 years old in a 28 year old body that is falling apart quickly.
I don't think there are many people my age that have seen a cardiologist, nephrologist, neurologist and a pulmonologist in such a short lifetime.
The last blood test I did showed that my creatnine, which reflects how well my kidneys are functioning, has gone up. When the number goes up, the kidney function is down. So, the docs decided to raise the Prednisone to 40 mg instead of down to 20 like I hoped. I'm kind of down at this point. Its not good when you go this good for this long to have to move backwards. And now the side effects of the other meds are getting to me. I have gastrointestinal issues now (diarrhea) and heart burn like you wouldn't believe. I never realized how much that sucks. And now I'm not sure if I'm having chest pains or ate food that was too spicy. Its a messy place I'm in now.
I'm due to go back to UCLA on June 2nd with a new host of blood results. Hopefully, things will look up this time around.
Keep me in your prayers.
Monday, May 12, 2008
Sunday, May 11, 2008
How it started
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....
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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