On June 14, Penni and her husband Sean met with Justin Westervelt, M.D., to get the results of her kidney biopsy.
The report was not good . . .
June 14, 2013: The diagnosis: IgA nephropathy with acute kidney failure.
What?!!! My kidneys were only functioning at 25 percent to 30 percent, and I had 60 percent to 70 percent scar tissue. According to the doctor, this is something that can’t be fixed. All we could do was try to control what function I did have. And if we did nothing, I had three- to six months before dialysis and transplant.
What?!!! Wait, I’m not that sick.
“Yes,” I was told. “You are.”
My creatinine level was now 3.29. This disease had been growing in my body for 20 to 30 years and was only now starting to show symptoms. It’s three times more prevalent in men than women. A person can live with lower kidney function, and if the IgA nephropathy was all that was going on, I could probably take some mild drug, keep my function as is and be OK for quite a while.
But wait — I’m special and rare. I also have some aggressive form of this disease, in something called crescent formations. It’s destroying my kidney’s filters in a hurry. We needed to do something to get that under control, to postpone transplant as long as possible. The doctor’s recommendation was to start me on Lisinopril (it works to protect the function you still have in your kidneys by decreasing the amount of protein you spill in your urine) and get a blood pressure monitor to keep track of my blood pressure, so I wouldn’t pass out from it going too low.
The general symptoms of my disease are high blood pressure, high cholesterol and swelling of the hands and feet. I had none of these symptoms, only nausea and fatigue, which I’m told was caused by the high creatinine levels. If the drugs the doctor suggested were successful, I could wait for a year, maybe even two before needing a transplant.
What?!!! It’s not if I need one, it’s when?
Dr. Westervelt also recommended the bone marrow biopsy, something I really didn’t want. But it would rule out any other issues, and it would need to be done at some point for a transplant. So I might as well get it done.
To say that my husband and I felt blindsided and shocked is a “minor” understatement. I looked at my husband and said, “This is just surreal!” Where did this brick wall we’d run into come from? In less than three weeks, I’d gone from normal and fine to sick and needing a kidney transplant.
I had lost about 15 pounds by this time and was feeling awful. The doctor recommended that we start Prednisone (a steroid), and then we would do a medium strength dose of a chemotherapy drug (cyclophosphamide) by IV in a couple of weeks. As this is an autoimmune disease, they wanted to lower my immunity by the drugs to see if the IgA aggressive crescent formations would calm down.
We went home that night and just stared at each other for a while, cried and then started to pray. Our constant prayer is that the drugs would do what they are supposed to do and with “no side effects!”
June 25, 2013: Bone marrow biopsy. Yuck! I will say that the nurses, technicians, etc. in the cancer treatment center at The Lied Transplant Center were great. They were sensitive to my anxiety and gave me as much information as they could to help me understand what was going to happen. The procedure is not great — but it is quick. My back was sore again for a couple of days but really not bad.
June 29, 2013: We had a 110th birthday party for both me and my husband (it’s a big year at our house). It was great fun, and even though I still felt very nauseous and tired, I had a great time. My in-laws came from Indiana to help out with the party, and they, my kids and grandkids were wonderful! I sat down a lot and didn’t eat much, but it was great to spend time with people who I care for and who care for me. They all made the day extremely special.
June 30, 2013: I started the Prednisone.
I wanted to wait until after the party, as I didn’t know how this stuff was going to react in me. Turns out it was an answer to prayer. The nausea went away; I got back a bunch of energy and started to feel almost normal again. If I’d known how much better I would feel, I would never have waited to start taking it. I could eat almost anything now, just smaller portions – I still had to watch the spicy stuff, but it was so awesome to feel better.
My research into IgA nephropathy also recommended cutting back on protein (so the kidneys don’t have to work so hard to flush the proteins out) and cutting back on salt and caffeine (to keep the blood pressure and any swelling down). I had been doing that and maybe it was helping also.
So far, I’ve had no bad side effects to this drug — only good ones. Yea!
July 1, 2013: It was time for the appointment with Dr. Vose – the results of the bone marrow biopsy.
End of Part Two