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Grace Grows Best in Winter - Pt. 1
Hi Friends! Welcome back!
This past week has been a roller coaster of a week. We started it off with James' transmission going out on his truck. It's only 5 years old with 120k miles, and should not be messing up. Unfortunately, the warranty is out, and his transmission isn't covered under the current Chevy recall or class-action suit. We are surrounded by great people & have amazing friends. A mechanic James knows can do the work, so he came and towed the truck. Another dear friend to James loaned us his truck until ours is fixed. That was a huge help and an unexpected blessing!
My nephrology appointment on Thursday did not go as planned. I walked into that appointment hopeful & excited, and when I left, I felt so defeated.
If you remember, on Tuesday, the kidney doctor had told me he was testing for aHUS syndrome and was confident that was it, so he wanted to send off the genetic tests and start treatment right away. Well. That is not at all what happened.
He sat me down and told me that he had consulted another kidney doctor who recommended getting a second biopsy because they can tell me within two days if I had aHUS with that. That was the WHOLE REASON I did a biopsy in September and for whatever reason, they didn't get good enough samples. He said he knew that I would not be happy about it, that he was concerned with the risks, and that he didn't feel like it would change anything at this point.
Kidney biopsies are extremely risky because they are the bloodiest organ in your body and you have to sign paperwork that you understand the risk of bleeding out & death when you do it. Couple that with the extremely low amount of blood in my body and it becomes even more risky for me.
My last biopsy experience was horrific. They told me everyone goes to sleep and I wouldn't feel a thing. Well, the meds they gave me didn't work - I was wide awake and felt the worse pain of my entire life. I was white-knuckling the gurney and I swore afterward that I'd NEVER do it again, yet here I am... being asked to do it again with no guarantees they'll get it right this time, nor find out anything new.
Then, he dropped a bomb on me...
He told me that he's changed his mind and doesn't feel that the Soliris Infusions would help me. He thinks my kidneys are too far damaged. He said if we do the biopsy and confirm now, the treatment likely would only delay a transplant by a few years, and he didn't want to do it. Next, he told me he thinks I only have a 1% chance of my body ever recovering.
Then I went off to the lab to have the genetic testing bloodwork drawn which will return sometime in the next 3-6 months.
When I left the office, I called my husband, then my dad & stepmom. Devastation set in and the tears came. Thursday night was hard. My spirit was grieved, and I cried so much the tears burned as they streamed down my face.
I didn't understand! God was so clear with me in multiple ways that His plan for me is healing, and then this doctor tells me it will never happen. My mind could not reconcile those two things fitting together. That night, I spent hours in prayer. I felt broken and defeated in ways I cannot adequately put into words.
I reached out to a couple of my prayer warriors and mentors. They bathed me in prayers and poured scripture into me.
One reminded me that Lazarus had a 0% chance of living, yet Jesus walked him right out of the grave. She encouraged me not to give up, nor rely solely on man's opinion. My other mentor taught me that "Grace grows best in winter. Without trials we'd never understand His grace this is so sufficient."
So, I did the only thing I knew to do... pray again. And God answered.
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