transcended.net

Part 1: Introducing lupus – my unwanted life companion

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So it was now the end of January 2005, I was 22 years old and had just been diagnosed with lupus. My rheumatologist strongly suspected kidney involvement because, well, my pee was apparently filled with blood and protein but no bacteria (which would have been present with a bad UTI). He didn’t want to start me on any medications until a) he knew for sure the kidneys were being attacked and b) if they were, the extent of the damage.

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Maybe it’s time to pause the story for a moment and explain exactly what lupus is for anyone who might be unfamiliar. Lupus.org is a great place to get more information but I’ll give you the quick and dirty here. Basically, lupus is an autoimmune disorder in which your immune system begins attacking your healthy tissue. So far no one really knows why this happens and there is no cure, only treatments that keep symptoms at bay. Most of these involve destroying the immune system so they aren’t exactly pleasant, but they seem to work so it is what it is. Since the definition of lupus is pretty broad, it can affect each person differently. Some people only have arthritis and skin issues, others, like me, have organ involvement. It can affect just one organ or several, and what is affected can also change over time. Recently Toni Braxton has announced that she has lupus affecting her heart and Nick Cannon (Mariah Carey’s husband) has lupus nephritis (kidney involvement). 90% of lupus patients are women and it also disproportionately afflicts minorities.

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But coming back to my own story, my rheumatologist Dr. Miller immediately referred to me to Dr. Joel Mittleman of Cedars Sinai. I found out many years later that he was the nephrologist that did Nat King Cole’s daughter’s (Natalie King Cole’s sister) kidney transplant (maybe there is something to the whole six degrees of separation thing!). He was a busy doctor but since I was referred as an urgent case I was able to see him within a few days.

Dr. Miller had mentioned to me that it was possible Dr. Mittleman might recommend a kidney biopsy be done. I still couldn’t believe there was something wrong with me beyond the arthritis, it had just never occurred to me that there might be something else beyond what I could actually feel. I couldn’t wrap my mind around the fact that my kidneys might slowly be failing no matter what my labs were saying.

When I met with Dr. Mittleman, he had spoken with Dr. Miller and gone over my records and he said he really did think it would be best if I had a kidney biopsy as soon as possible. He explained that while there are urine and blood tests that can be run, because the kidneys are very good at compensating for damage (i.e. if some filters are destroyed, others just work harder until too much has been destroyed and the kidneys fail. This is why someone can suddenly present with kidney failure despite very few warning signs) the only way to know for sure how badly damaged they were was to study the tissue itself. For that they would need to insert a needle into my back (under local anesthesia) in order to remove a tiny piece of kidney. This would be done twice and both samples would be studied for damage and based on how damaged the samples were they could extrapolate how much damage had been done to the kidneys overall.

As shocked as I was by the lupus diagnosis I was even more in shock hearing that I would need to have this procedure done, one which involved an overnight hospital stay. I had never had to stay in the hospital before, I had never had any kind of procedure done in the hospital, I had always been a fairly healthy kid and never so much as broken a bone before.

My doctors proceeded with a sense of urgency so I didn’t exactly have time to absorb everything. The biopsy was scheduled for a week later so I had time to tell work what was going on, that I would need to be out, maybe for awhile. My boss at the time was known to be a bit of a tyrant but she had suffered health problems herself and was very understanding, they told me to take all the time I needed. My parents wanted to be with me for the procedure so both of them drove down and stayed with me for the week following the biopsy. This was the first time I could remember my dad taking time off work with no notice.

I was scared of the procedure itself. I have always hated needles and blood and believed myself to have a really low tolerance for pain so everything about this terrified me. The idea of being awake for the procedure didn’t help things but I was told general wasn’t necessary for something like this.

We went to the hospital early in the morning, I filled out a million forms and was eventually asked to change into hospital gown and had an IV placed (again as someone who hates needles, this was a ton of fun – NOT). I was led back to the procedure room where my doctor and a few other people in scrubs and gowns were waiting for me. I can’t remember if I was given any sort of sedative or not but I was told to lie face down and given the local. Eventually it was time to start the biopsy and Dr. Mittleman walked me through what would happen. I was told to hold very still (I was so scared I was going to accidentally flinch or move) and I felt pressure when the needle was inserted. He told me he had gotten one piece and was going to be going in again for the second. It was all over pretty quickly and then I was wheeled to a hospital room.

After this my concept of time is pretty fuzzy. Cedars Sinai only has private rooms and I remember it was not an unpleasant room. They said they would bring in a fold-out bed later on because my mom had asked to stay with me overnight. I was told they needed me to stay in bed for about 24 hours to reduce the risk of internal bleeding. I wasn’t even allowed to use the bathroom – I had to call the nurse for a bedpan. Luckily I managed not to go #2 during my stay!

At some point my family and Paul left to go to the cafeteria and they came back saying the food was amazing. I don’t remember anything about the food I was given, I don’t think I had much of an appetite and I was pretty out of it because I think they were giving me painkillers at that point. A nurse would come every few hours (including in the middle of the night) to take some blood. More needles, ugh.

Finally it was nighttime and I was given something to help me sleep. My nephrologist had come earlier in the day I think, but my rheumatologist came after I had been given the sleeping pill so it must have been past 9 or 10pm (he was a workaholic!). I remember being so appreciative that he had come to see how I was. I didn’t sleep all that well because of being woke up every couple hours for a blood draw (sidenote: how are you supposed to recover when they don’t let you sleep?).

By the morning I was completely ready to be out of there but had to wait for my nephrologist to come and release me. He finally came around 9 or 10am and I was asked to sit up for the first time in almost 24 hours. I was allowed to get up and use the restroom but when I got back to my bed I was dizzy and my blood pressure was too low. They decided to give me an IV of saline solution to help raise my blood pressure and I remember feeling secretly relieved that at least I didn’t get the IV put in for nothing! I was told to rest for another hour after which my doctor came back and I was finally released.

I was told what to watch out for, signs of infection or internal bleeding and that I needed to take it really, really easy and was not allowed to do anything remotely strenuous.

For my part, I was just glad that it was over and I was going home. I was hoping we’d have some answers soon and that the worst was over, unfortunately as far as my symptoms went, things were only about to get worse…