Lupus and Me

An Adventure with life

Below is my story - just a small synopsis. I truly am grateful to be alive! I believe it's thanks in part to Dr. Paul Bernstein, Renal - Dr. Robert Caifano - GP (The greatest) and everyone else, including the staff at RGH, my family and friends.

Select this link for Lupus and Lupus Nephritis general information, research, blood definitions

A change in my life, the summer of 2004. I started to write this on Sunday October 10 at 2am - it’s now 5am and I'm still rearing to go. I just am having a sleepless night. So I'm sure there will be many revisions to this so keep posted for changes.

How about this, February 2004, my hands started to hurt. Knowing me, and my love of computers, I thought and so did my doctor that I had carpel tunnel. My doctor suggested braces. I got braces, night ones and day ones. They worked for a while but they still hurt. So we took medicine to help with the pain. As the months went on, my hands didn't get any better and other little things seem to go wrong as well. Blood tests not showing too much and not really giving any indication of what was going on. By May, my hands not only hurt more, I wasn't able to use my hands and now they were swollen. I wasn't able to get into or out of bed and the couch became my evening friend. What great family and friends I had to help with some housework and supporting me. Going back to my doctor in June 2004, Robert Caifano, we did a 24hr urine test. By Tuesday I was in his office and he was making arrangements with the Kidney specialist. I really didn't know exactly what was wrong, how serious it was or what was going on. I just knew my instincts told me it wasn't good. The urgency of my doctor to get me to see the kidney doctor and not stopping until he got me in that same week on Thursday seemed a little concerning. It truly is wonderful how Caifano and his staff worked to make this happen.

Ok so Thursday came, 3:30pm my husband and I walked into the kidney doctors office. I should say, with the help of my husband, it was getting tougher and tougher to walk, to stand up from sitting and even just moving around. That's where I met Dr. Marvin Grieff, he looked at me, yes, I looked at him too <smile> and he went over my history. He never gave away his thoughts; he said "hmm" a lot and listened. I'm pretty sure he was stumped. My symptoms at this point where all over the place, I had a fever and I would get very cold and start shaking all over, including my teeth. I was retaining fluids my renal counts were off the charts with protein spillage over 2000. I had an infected finger and a scratch under my eye. Nothing seemed to make sense to anyone. Dr. Grieff then left for a moment and he brought Dr. Paul Bernstein into the room. He also went over my history. Both of them together decided I needed to be admitted into the hospital.

Things were happening fast now. Thinking back over it, and it has been several months, the looks on everyone's faces were perplexed. Hey, I've never been easy to figure out some of my friends' even call me unique - go figure.

I went on to the fifth floor of the hospital. This floor also had a hospice room on it. My father passed away on this floor back in 2001. It had sad memories - but I was ok with it. I recognized several of the nurses on the floor. By this time it was Thursday around 6pm. Ken, my husband sat with me and helped me to get in and out of bed when I needed it. The nurses put the IV in me and started some stuff. I don't remember what it was. I think the objective was to clear my system of the pain killers, water pills and anything else that was in there so they could get better readings on just what it was I had.

Around 8pm that evening, Dr. Bernstein came into my room to see how I was doing. I didn't know but I honestly can say, I was never worried or feared anything, I don't know why. He sat on my bed and held my hand. He made me feel comforted, secure and reassured that we would figure out what it is I had and how WE as a team would get through it. I was and continue to be humbled by this man.

Friday came, my white blood count was very low and they needed to put me into a private room to keep me safe from germs. Me safe???? At this point I was being visited by many residents, chiefs of staff, from medical, cardiology, blood and nephrology. None of them made me feel like a specimen. Which to this day still amazes me. They were there trying very hard to figure out what it was I had. The chief of medicine Dr. Richard Stern, came into my room with several residents, he asked me some basic questions and so the residents he had in tow. Later I was to find out that he knew what I had before any of the labs came back. He shared it with Dr. Bernstein. What a great team they all made and I was lucky enough to be a part of them. I had an echo cardiogram, chest x-rays, nuclear x-ray (this was to show any blood clots) blood work, temp taken, blood pressure and of course lots of vampires came to visit (blood work). I still got the chills and my finger looked horrible. Don't think I mentioned Dr. Kendula - who was a truly wonderful third year resident - he cared so much about me. He tried so hard not to hurt me as he put a needle into my finger to try and extract anything out of it. Didn't work but he tried. He too was there late on Friday reassuring me they would figure things out. There was also a wonder lady resident there, her name is Dr. Murthasamy. She was the most knowledgeable, patient, kind, and had one of the most beautiful smiles I have ever seen.

Something on the lighter side, as word got out that I was in the hospital, friends and family came to visit. By Friday I was unable to feed myself, Regina, my mother-in-law was feeding me Jell-O. I do love Jell-O. Another friend who came by, and this one surprised me was my friend Mary Carmel. Ken was there and so were the kids. Friday, thinking back and now knowing the consequences of what might have been was very scary but thankfully my angels were with me. Also, pretty funny when everyone was told they had to where masks so that I wouldn't get their germs. The masks part I didn't like - that continued through Saturday when I had had enough and told them not to bother with them. Yuck.

Ok back to Friday, the day went along pretty quickly with people coming in and out and x-rays and just life happening. About 9pm Dr. Bernstein was back in my room sitting on my bed. Ken and the girls where there too. He then told me what I had. Lupus. I didn't know what it was, hadn't heard of it before, I just knew whatever it was I had, now had a name. He afforded me the opportunity to make a choice on a treatment. A large amount of steroids once a day for three days and then we'd see what happens. One day at a time. So that's what we did.

Saturday was a blur. But I was starting to be able to move around. I could get into and out of bed by myself - this was an accomplishment. The fears I had of not being able to make it to the bathroom was and not being independent truly had me concerned. I don't want to be dependant on anyone or anything. I was truly grateful for Dr. Murthasamy, who gave me much information and knowledge about Lupus-Nephritis. (That's Lupus attacking my kidneys.)

Sunday morning came; it was around 10am when I received a call from Dr. Bernstein - his day off. He said he just called to see how I was doing. Again, it humbled and amazed me that someone as important as him would think of me on his day off. We chatted for a few minutes then I asked him what would have happened if I didn't have the steroids on Friday - he said I would have died. WOW what an eye opening experience that was. But again, I was never fearful or scared of dieing and am still not. I knew inside I was going to be ok. I think that's what doesn't make this so real for me. I never thought it to be that serious. I believe in angels and I believe they are with me through every step of my way and life.

Monday or was it Tuesday a kidney biopsy was scheduled. Dr. Bernstein was there overseeing the procedure. He truly gives me comfort. I don't think anything will happen to me as long as he is there. Isn't that strange. I believe he is my human angel.

More to come I'm just getting tired of writing but I wanted to get this posted as it is something I've just wanted to do. I am so glad I'm alive and it is truly thanks to Dr. Robert Caifano, Internist - my heart and soul, Dr. Keith Pryhuber, Rheumatology & Internal Medicine - my nemesis and advocate and the amazing medical gifts of knowledge, kindness and caring touch of Dr. Paul Bernstein, Nephrology - the MAIN doc.

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