Of course, they started drawing blood like crazy...they were testing for anything and everything. I was currently on birth control which can lead to blood clots but I didn't present any of the other risk factors that would make that a likely cause.
My lower left lobe of my lung (where they thought the pneumonia was the worst) was filled with blood clots. There was also a large triangular shaped clot lodged in the upper portion of my right lung. To get to these locations, he explained, the clots traveled from my strangely swollen legs (clue #1) THROUGH my heart (clue #2 - bizarre pulse) and lodged themselves in my lungs (clue #3 - shortness of breath). He could not predict how many times this had happened over the course of my illness, spanning March and April. I could have easily had a heart attack or stroke.
I will never forget what he said next...
"You should have died. You should not be alive. Allowing you to walk, giving you percussive breathing treatments...this should have killed you. There's a reason you are still alive."
Dr. Weber went back to my chart and pulled up all the labs they had run the night before in the ER. It hit him like a ton of bricks.
It was my kidneys. I was leaking MASSIVE, off the chart, amounts of protein in my urine...and one of these specific proteins keeps your blood from clotting unnecessarily. He looked at me in disbelief. All of this could have been avoided if they had simply run a basic urine test at the onset of all my issues. In anguish he said, all of this could have been avoided if he had simply drained the fluid off my lung during my last stay because he was sure there would have been blood clots in it. I reassured him he did what he thought was right given the information he had at the time. He told me I probably never had bronchitis or pneumonia and all of those antibiotics could have exaserbated the situation. It was fine, I told him. It all has a purpose. I wouldn't know the purpose of those blood clots for many years but God allowed even that for a reason...
He quickly brought in two nephrologist. He warned me of their lack of bedside manner and how completely opposite they were but said he would trust them to treat him. He checked on me constantly for the first two days but then would be gone for his wedding. He left orders for the nurses to keep him aprised on my situation. One nurse told me that he called daily.
Dr. Morgan was the first nephrologist for me to meet. He was an older gentleman and a straight shooter. I remember when he walked into my room and introduced himself. My mom, husband and 3 friends from high school were there at the time. I figured he would dance around the issues and ask the "non-family" to leave. Clearly this was before HIPPA because he didn't even hesitate. He sat down and started right in on a checklist of things that may be wrong.
- They needed to see if I actually had 2 kidneys and if both kidneys were getting adequate blood supply. (I didn't even know it was possible to live this long without already knowing that but...)
- They needed a 24 hour urine sample (tricky when you can't put weight on your legs even on top of a bedpan) so they could determine my overall kidney function and the exact types/amounts of proteins I was leaking.
- There was a possibility that this kidney issue was a result of all the medications and could possibly "right" itself, but he didn't put much hope in that and he didn't want me to either.
- They would not know exactly what kind of kidney disease they were dealing with until they did a biopsy, which he would recommend after giving it a month to "cleanse" itself from all the meds I had been on.
I fell asleep and awoke to the 2nd nephrologist in the pair, Dr. Brandon, scooting me over so he could sit on my bed. He was wearing boots, wranglers, a giant belt buckle and a white western shirt. The only indication that he was even a doctor was the stethescope slung around his neck. He introduced himself and then said, "I'm going to take you to see if you have two kidneys." And that was it...my transport walked in and we all rode down in the elevator together. Good news - they were both there and both had bloodflow running to and from them. They would collect and analyze my urine but their part was pretty much done for the time being except Dr. Weber had put them on as my primary doctors (since the others were banned). They would make all the orders on my charts until he returned.
More blood tests came back with surprisingly bizarre results. My cholesterol was 495, a result of the pancreas attempting to compensate for a lack of protein in my body. It was something apparently the lab techs and phlebotomist found entertaining because they were always sending someone new to take my blood. When I asked why, a tech told me that everyone in the lab wanted to see the 21 year old, 90 lb, girl with cholesterol of 495. Atleast I was a topic of interest...
Danny and my mom kept me company. One of them was almost always with me. Mom took the night shift, sleeping in on of those terrible hospital recliners, because I shared a room with another woman. Danny was there every moment he wasn't in class. I rarely buzzed the nurses...Danny and mom even took on bedpan and sponge bath duty. Looking back, I don't know how a newly married 22 year old did the things he did...but as a result of his gentle, servant's heart, our first year afforded us the close bond that many couples don't form in 20 years.
Those 5 days seemed to last an eternity. I remember the first day I was allowed to walk. I'm sure I looked like a newborn horse trying to manuver my way to the bathroom for a shower. As soon as I walked out of the bathroom, there sat Dr. Brandon on my bed. "Why are your legs so red...that's not normal. Come sit beside me and dangle your legs off the bed...yep, not normal." And with that, I bought myself a few more days stay. They would give me a month on cholesterol medicine, blood thinners, and water pills. If the results weren't better in a month, a biopsy would be necessary.
The first few days at home were trying for me. I could do literally nothing for myself and I could contribute to our "house" in no way. I was little more than an invalid. I had to sit to take a shower and became exhausted doing so. I was so exhausted that Danny would come when I finished, wrap me in a towel, carry me to our bed and dry me. He would then help me dress and brush/dry my hair. Any pride or self reliant issues were long gone. God had humbled me and broken me of those in a very real way...a lesson I have to relearn sometimes but He is faithful to teach!
I remember being home those first few nights. I prayed almost non-stop and finally I got up the guts to ask God to heal me. I don't know that I "heard" God's audible voice, but I knew the answer was no as clear as anything I had ever heard. I asked again, again no. I pleaded a third time, NO this is the road I would have you walk. I have never asked for healing again.
After a month, I returned to the nephrologist. My numbers were worse than before. I was leaking 4000+mg of protein...but my kidney function was somehow still 100% A biopsy would provide answers and a plan.
I stood in front of my church that next Sunday to inform them of what was going on, what we needed, and how they could help. I remember giving a broad overview with tears streaming down my face. Then, with complete peace, I asked them not to pray for my healing but to pray for God's will to be done in my life so that He could be glorified. If that meant healing, so be it. If that meant suffering, I would suffer. And if that meant death (a very real possibility), I would praise Him all the more. I remember being chastised for not praying for just healing, something I still can not fathom. "You just need to have more faith..." they would say to me. I would just smile and nod.
I had (and still have) faith that God could heal me if He chose BUT also knew that God had granted me the faith to live/die for His glory if he chose not to heal me for His greater purpose. I didn't need to know that purpose to rest peacefully in it. God had spared me the thought of why me...He spares me from it still...something I am thankful for each and every day.
So with my heart and mind set on glorifying God with my life/suffering/death, I was scheduled for a biopsy on June 1, 1999...(part 4 coming tomorrow hopefully)
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