How Healthy U saved my life: Part II

PenniPenni Davis is a grant protocol associate who has been at UNMC for 14 years. She is a mother of two and has been married to her husband – “a wonderful man,” Penni says – for almost 30 years.

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.

For more information on the Healthy U program, click here.

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

THURSDAY: The conclusion

How Healthy U saved my life: Part III

Penni0801Penni Davis is a grant protocol associate who has been at UNMC for 14 years. She is a mother of two and has been married to her husband – “a wonderful man,” Penni says – for almost 30 years.

On July 1, Penni, buoyed by her faith, the prayers of her friends and the good work of her doctors and the other health professionals at The Nebraska Medical Center and UNMC, met with Julie Vose, M.D. With the help of medication and some dietary changes, Penni is feeling better. But the results of her bone marrow biopsy have just come in . . .

July 1, 2013: Dr. Vose didn’t keep me in suspense. It was a good report, finally!!!

There were no issues, other than what is going on with the kidneys. I’m a little anemic, but that’s almost expected. It’s the first good news we’ve had in a while.

For more information on the Healthy U program, click here.

July 3, 2013: We’re going on vacation. We already had paid a deposit on a cabin, had made arrangements for someone to watch our dogs and house — we were going to Southern Indiana and enjoy a break. I needed this!

We took our 12-year-old granddaughter with us, and had a great time. What I didn’t know at the time was that my creatinine level from the July 1 labs was 4.05. Dr. Westervelt had talked with us about things to watch out for — passing out from low blood pressure, extreme fatigue (to where I couldn’t get out of bed) and to be sure to drink lots of water and get enough rest. I felt good and had a wonderful time. We went canoeing on Blue River (I paddled a little) and explored the many caves in the area. I came back to work on July 10, my mother’s 89th birthday. Wow!

July 11, 2013: Labs again. More blood and urine. Tomorrow is a big day.

July 12, 2013: I’m having my first “chemo” treatment, going back to the cancer treatment center this afternoon for the five-hour infusion. I’m praying that it does exactly what it is supposed to do and with “no side effects!” Dr. Westervelt will be checking labs weekly for six- to eight-weeks after this treatment and wants to see the creatinine levels go down. Me too!

I checked in, they took vitals. I was hooked up to an IV for two hours of just fluids. This was OK — I just didn’t know when we got there that it was going to be five hours total.

They also gave me some medication for nausea with the second bag of fluids, then the chemo drug and another medication to coat my bladder so it wouldn’t hemorrhage. (Wait! I didn’t know that was a possibility!)

This all took five hours to get into my system, which was pretty boring — lying in a bed just waiting for the bags to empty. While talking with the nurse, I was told that I was receiving a medium-strength dose of the chemo. Also, she had my lab results for the last two times I’d gone to have urine and blood drawn.

As I told you earlier, I found out that day that the creatinine level for July 1 was 4.05 — but the creatinine level for July 11 was 3.28! That was a significant drop and we were high fiving around the room.

The other thing I was told was that Dr. Westervelt had set me up for this treatment every 28 days or so. I told the nurse that I would only need this one — she said “Uh, OK.”

Other than being cold that evening I really had no issues with anything. I have not been sick to my stomach and have had NO SIDE EFFECTS! I’m really doing quite well. Things are getting back to a more normal routine for me and I feel good.

July 17, 2013: More labs (sigh).

July 19, 2013: Appointment with Dr. Westervelt – and what a wonderful appointment!

My creatinine level is (wait for it!) 2.2!!!!

This is extremely good. Dr. Westervelt is very pleased. Sean and I were practically jumping up and down. Things are looking really good. The fear of three to six months for dialysis and transplant has been beaten back to a much later time frame. I will continue to have labs done weekly, and Dr. Westervelt would like to do at least two more chemo treatments.

I’m not happy about the toxic chemicals in my body and my numbers dropping with the Prednisone has been good. So, we’ll watch the numbers for a couple more weeks and then decide on more chemo.

My goal is to have my creatinine level down to 1.5 (the doctors would be happy with in the low 2s), and the blood in the urine to go down even further than it has, which would show that the inflammation in the kidneys is going down. So I have a ways to go. This is not going away, but I’m just trying to feel OK, maintain my kidney function and stave off dialysis and/or transplant for as long as possible.

All I know at this point is I’m so happy and excited to know that I’m getting better and better. The only new thing is a low grade antibiotic to help keep me from developing any infections from the compromised immunity. This has been just an amazing couple of months and it’s only going to get better! Count on it! Thank you, Lord!

Some thoughts today:

Thank you to my co-workers, who have been so supportive and caring. I’ve had offers for a kidney from people I never expected and have been truly humbled by your generosity. I must put in a plug for organ donation here, as people like me must have an organ to live . . . and you can live without one. I work at a great place and thanks to Healthy U, I’m still here.

To say I feel blessed may seem strange — bad doctor’s report, not a great prognosis — but the people in my life who have shown me love and care are my greatest blessings. I’m grateful.

Hang with me as I continue my journey — let’s see where we go next.

How Healthy U saved my life

PenniPenni Davis is a grant protocol associate who has been at UNMC for 14 years. She is a mother of two and has been married to her husband, Sean – “a wonderful man,” Penni says – for almost 30 years.

On May 10, feeling absolutely fine, Penni went in to have her annual checkup.

The following is what happened next . . .

May 10, 2013: I went in to have my normal annual check-up. You know that stuff we ladies do but hate? Well, I was told I didn’t need any tests this year, and I was really glad. I’m turning 60 in a couple of weeks, and things were good. I always do the Healthy U, have for several years. I get labs done because I like to keep tabs on cholesterol, triglycerides, LDL and HDL. I also have had hypothyroid for about 35 years and need to have my TSH levels read yearly to get a new prescription. It’s free, easy, so why not?

For more information on the Healthy U program, click here.

Rachel Bonnema, M.D., in the Olson Women’s Center is great. I’ve seen her annually for several years. We talked about how all was going well with me, and that I wasn’t even dreading turning 60. A few days after my appointment with Dr. Bonnema, I went to have my blood draw for the Healthy U lab work. No big deal.

May 23, 2013: I left for Indiana for the Memorial Day weekend, driving with my husband and son to visit my in-laws and attend the Indy 500 (a yearly, fun trip for us). On the way, my cell phone rang.

It was Dr. Bonnema. She asked, “How are you feeling?”

“Fine,” I answered. “Why?”

She said, “No really, how are you feeling?”

“Well,” I said, thinking about it, “other than being tired a lot lately, I’m fine. Why?”

“I just don’t like some of the numbers that came back on your lab work, and I’d really like you to come in tomorrow and have more blood drawn and have the labs run again.”

“Sorry, I’m in the car and will be back in Omaha on Tuesday (May 28),” I said. “Can I do it then?”

“OK,” she said.

May 28, 2013: I had the second set of labs drawn.

May 29, 2013: The next day, I was referred to Justin Westervelt, M.D., in internal medicine – nephrology. I had an appointment made to have a kidney ultrasound and a 24-hour urine protein screening.

May 30, 2013: For my 60th birthday, I got a kidney ultrasound and more labs. I was feeling a little like a pin cushion, but still not worried or concerned — I felt fine!

I was tired often, but I’m a busy person and just thought it was life. I have taken Naproxen (Aleve) for several years for arthritis and thought that the problems with my numbers might be caused by that, so I stopped taking it as of May 23. I fully expected things to go back to normal real quick.

May 31, 2013: Dr. Westervelt called — he wasn’t happy with my numbers either. When I originally had my labs drawn, my creatinine level was 2.9 (normal range is 0.6 to 1.1 mg/dL for women); on the second draw, it was 3.05.

This was getting crazy. Dr. Westervelt wanted a kidney biopsy to confirm his diagnosis and to know the exact condition of my kidneys. The ultrasound showed normal-looking kidneys, so there were no growths or such, which was good news. The doctor also recommended that I have a bone marrow biopsy — as there was also blood in my urine and he wanted to rule out any other problems — and then to see Julie Vose, M.D., in hematology. All this time I was just doing what I was being asked and trying to understand what was happening. I still felt fine — except for being tired.

June 14, 2013: I had the kidney biopsy done. This went much better than I expected; The Nebraska Medical Center personnel were fantastic and understanding of my nerves and fears. My husband and I prayed for no pain. I was sore in my back for a day or two, but had no other discomfort. I had developed nausea over the past week or so and found it difficult to eat much of anything. Everything smelled bad, tasted metallic and just didn’t sit well. Bagels became my favorite food — I was living on them, as they were one of the few items I could eat without feeling sick. I thought, “This is getting really weird.”

June 21, 2013: My first appointment with Dr. Westervelt. My husband had always been on the conference call with me and the doctor, because if I had to try to relate all this information to him afterwards, it would be a mess. So when it was the day to actually go and get the results of all of the tests, Sean was there too.

And thank God he was, because Dr. Westervelt’s report was not good.

End of Part One

WEDNESDAY: The report, and what followed