Sorry I didn't get to it last night...life (and the desire for sleep) just got in the way!
Quick Recap - I'm 21, been married now for 9 months. "Flu" turned "bronchitis" turned "pneumonia" and finally led to the lifesaving find of blood clots in my lungs (pulmonary embolism for my science friends). In searching for "why", they found that I was leaking protein in my urine (aka - kidney disease) and had ridiculous cholesterol (495). I was hospitalized for the blood clots and testing and eventually sent home. At home, I was little more than an invalid. God had broken my pride and self reliance. He had answered that He would NOT heal me. He had given me a peace about the prospect of life, suffering or death. Now it was time for the biopsy.
So the biopsy was scheduled for June 1st. I would have to go to S&W in Temple because they didn't have a nephrologist in Bryan and would no longer pay for me to see the non-HMO nephrologists who had managed my case so far. Since it was in Temple instead of College Station, Danny wouldn't be there the day of the biopsy because he had summer school. Luckily, my parents live in Temple so they would be there.
I remember the day of the biopsy well. I had to get off my blood thinners, a fact which worried me (and I think the doctors) a great deal. My parents went with me to the appointment. I must have looked ridiculously young because the nurse asked if I wanted my mom to come back and wait with me. I told her that I would be fine. She looked at me and said, "But you're so young. Don't you want your mom?" I told her I was 21...she thought I was 13 (not something a 21 year old wants to hear!)
They did an ultrasound to get a good idea of the exact location of my kidneys...and good thing they did because mine are apparently VERY shallow. They gave me a local and then a "deeper" local. It was time. "Breathe in and hold it," the doctor ordered. I did...and then heard the WORST sound I have ever heard in my life. It's a sound I will NEVER forget. You know the sound of the old ear piercing guns? KA-CHUNK! That's the sound this biopsy device makes except they are extracting cells from your kidneys. "Now breathe...and again - Hold it" KA-CHUNK! "Now breathe...and again - Hold it" KA-CHUNK! I honestly don't know how many KA-CHUNKS there were. I don't remember it being painful right then (it WAS later) but I just remember the pain of the sound...and then it was over.
I would spend at least 24 hours in the hospital laying COMPLETELY flat on my back. They had 2 fears that had to be monitored - I would bleed out or I would clot too quickly. They took me to my room and gave me some pain meds. They would check my urine for blood for the next 24 hours...quite a feat considering I had to use a bed pan and I am not allowed to sit up whatsoever. I hadn't been in my room long when Danny showed up. I was so glad just to hold his hand. He looked worn out and beaten down...and I could do nothing about it.
I didn't bleed out or form a hematoma so the next day I was released. The doctor asked me if I wanted pain meds. I assured him I would be fine...after all, I had 2 knee surgeries under my belt and countless soccer injuries. WHAT A MISTAKE! By far, the kidney biopsy was the most painful experience of my life! With that (and no pain meds), Danny and I headed home to College Station. I felt EVERY bump in that road in the HOLES in my kidney. It didn't matter how fast or how slow he drove. I could not have been more miserable...needless to say, we called when we got home and asked for that pain prescription.
A week later, I returned for my biopsy results. "I didn't believe it when they sent the report so I went down to the pathology lab myself..."was how my doctor started out the conversation. I had Mesangial Proliferative Glumerulonephritis, something that usually occurs in children or the elderly and rarely/NEVER leaks the amount of protein they were seeing. It's an autoimmune disease, meaning my autoimmune system for some reason had chosen to attack my kidneys. (This becomes a key to LOTS of things later). I didn't even care the whats or the weirdness. Finally I had a name to it all. Answers were answers regardless. And because I'm an unemotional, rational, bottomliner, my response was "So, what do we do?" I got my pen and notebook ready.
I wasn't expecting what he said next, "There are things we can try, but they probably won't work because...bottom line, it's incurable. You will always have this. There's a good chance it will take your life, sooner rather than later." I didn't cry. I don't think I even flinched. God had prepared me for this long before this visit...long before I knew it wouldn't just "go away on it's own."
I wanted my options. He gave them. 1st we could try the highest dose of prednisone they could give my body. He didn't hold out much hope for this, but it was less severe then the next option. Pill chemo then IV chemo. Bottom line, they had to suppress my immunes system as much as possible.
"Let's do the prednisone then. Start me today." I was determined. I also had to go on a low protein, low sodium, low cholesterol diet...and prednisone would probably make me gain massive amounts of weight because it would create the feeling of always being hungry. I didn't care and I would severely monitor my eating...so he made the orders.
Danny and I left the office. I think the only thing we really discussed was our surprise over the word incurable...I didn't know doctors used that term anymore. Even cancer patients were declared cured after a certain number of years...I never would be! I would always be sick even when I was healthy...
We went to my parents house to tell them. I remember most distinctly sitting across from my mom in my childhood bedroom. She kept repeating through tears, "God's going to heal you, I just know it. He HAS to heal you."
And here came the hard part, "Mom, God doesn't have to heal me and He may choose not to heal me. I need you to know that I'm okay with that...and I need you to be okay with that too. I need to know that if God allows me to suffer with this or takes my life as a result, that you will still praise Him and know that it was for His glory...and that's what I want more than anything." She nodded and embraced me. I don't think she was or is or ever will be okay with that...maybe that's what being a mother is all about. She lamented (and still does) that I (and my brother) have these health issues instead of her. She would gladly bare them all for us...but ironically we would do the same for her!
We went and told Danny's family the same information and then headed back to our apartment in College Station. That was a long, dark, quiet drive. About halfway there, I finally broke the silence with this, "You didn't sign up for this when you married me. If you want to divorce me, I understand. I wouldn't be angry or hurt and I don't think anyone else would either. I can move back home with my parents and you can move on with your life. You didn't sign up for this!"
He stopped the car. "Don't ever say that again. I married you no matter what. Don't ever say that again." He started driving again...and I sat and cried silently. Danny didn't "process" my illness and all that stirred within him for many, many years...but his faithful resolve to stand by me did not waiver.
I started prednisone. I honestly couldn't tell you now how many different medications I was on at the time and how many different times I had to take the different meds. Some with food. Others without food. Some with a full glass of water. I think one with milk (?). I had one of those GIANT pill containers that has it broken down by the hour. I was also still quite useless, but gaining strength every day. I obsessed over my diet and insanely monitored my intake. The doctor didn't lie about prednisone making you ravenously hungry...I just denied myself. My stomach would ACHE in pain so I developed some club soda "remedy" that provided some relief. Prednisone also caused me to be ridiculously resltess, so much so that I wore a path around our living room carpet walking it during the night. I would also just lay in my bed, stare at the ceiling and pray...not for me, but for everyone and anyone I knew. Because I couldn't sleep at night, when I did fall asleep I just literally crashed, usually on the couch in the afternoon. I was living on 3 or 4 hours of sleep a day.
My 2 week check-up with the nephrologist came. Danny and I waited anxiously in the doctor's office. He walked in and said words I never expected, "I can't explain this, but it's gone. You have absolutely no protein in your urine." He went on to say that he didn't expect any change at all so this was mind boggling and inexplicable. He just kept repeating the words GONE and DISAPPEARED. We were in disbelief. I would continue the full dose of prednisone for 2 more weeks then he would back me off slowly and continue to monitor me.
I knew that this was something only God could have done. I made that clear to the doctor and anyone else I could share it with. I was elated and confused. Had I misunderstood when I clearly sensed God saying that He would not heal me? Had all of this been some sort of bizarre test? Was it over? How would/could He use this?
Besides being on A LOT of meds and suffering through all the side effects of prednisone, I was healthy through that summer. I was healthy through that fall. I was healthy through that winter. Then, MARCH came. I knew it right away...all the signs were there. I remember calling Danny into the bathroom to look at my urine.
"That looks frothy, doesn't it?" I asked him. (I know, weird question to ask but frothy=protein in urine. And I know, it's weird to ask your husband of a year and a half but we were so far past that.) He didn't even have to answer...I KNEW his answer when he slumped his shoulders and sunk his chin to his chest. He just pulled me close and hugged me. "I'll call Dr. Duke and get an appointment."
And so I did. I was right. It was back. Clearly I had not misunderstood God. The doctor was shocked, almost speechless. "Same approach because you responded so well last time." I agreed and we started prednisone all over again. This time, however, I was student teaching so I didn't have the luxury of crashing after a sleepless night. I just pushed forward. God gave me the strength. Danny gave me the will.
2 week check-up. "Gone again...I just really don't know." We followed the exact same treatment plan as last time. It would take me 6 months to back off the prednisone.
That May, Danny and I both graduated. We moved to Fort Worth so he could go to seminary and I got a job teaching 4th grade. Initially, we discussed keeping my nephrologist but decided it was too much of a drive and unnecessary expense. This decision turned out to be MONUMENTAL and the only thing I can attribute it to is God's direct leading, intervention and direction.
Pay close attention because this may look familiar...
Besides being on A LOT of meds and suffering through the side effects of prednisone, I was healthy through that summer. I was healthy through that fall. I was healthy through that winter. Then, MARCH came. I knew it right away...all the signs were there...
but what nephrologist would I see and how would they treat it now...that's part 5 (coming tomorrow I hope)
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