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.
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