My name is Penni and Pastor Sean is my husband of 30 years. Until early this year (2014) we lived in Bellevue, Nebraska and I worked for the University of Nebraska Medical Center in an Administrative position for the college side of the university, not the hospital side (just so you know I know nothing about medicine or such).
I think you need to know who we are. We believe in trusting God and prayer. As you read this, you will see how I’ve been up held by my faith and my God, with wonderful support of my family and friends. It’s a story I can’t wait to share.
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 company provided 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?
Rachel Bonnema, M.D., in the Olson Women’s Center is great. I’ve seen her annually for several years now. 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 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: I was called by Dr. Westervelt — he wasn’t very 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, and the Nebraska Medical Center personnel were fantastic. They were very understanding about my nerves and fears. My husband and I prayed over the doctor before the procedure and prayed for no pain. God is faithful. I was only sore in my back for a day or two and no other discomfort. I had developed nausea over the last 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.
The diagnosis: IgA nephropathy with stage 4 kidney failure.
My kidneys were only functioning at 25 to 30 percent, and I had 60 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 death.
My creatinine level was now 3.29. 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?!!! My kidneys were only functioning at 25 to 30 percent, and I had 60 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 totally 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. We knew that God can and does heal in a moment — He can fix my kidneys and I can be normal again, instantly. But if I was supposed to walk through this journey, He would be right there to bring comfort and peace, which He has provided in abundance! Our constant prayer is that the drugs would do what they are supposed to do and “no side effects”!
At this point, we turned to our church family for support. We had a meeting with our pastors and some of the leadership at our church to bring them up-to-date on the doctor’s report. We had been keeping things on the down low, as I didn’t really want to hear anyone’s horror stories about their family, friends etc. that had procedures and treatments and what their results were. I needed to focus on believing that my God would heal me, and that the drugs would do what they were supposed to, and there would be no side effects.
I thought: If I have ever done that to someone else, told my story to someone who really needed just to be encouraged and upset them, I ask forgiveness — I didn’t understand.
The encouragement and support and prayers of my dearest ones were overwhelming. My pastors who called me for no other reason than they felt led to pray for me; Rhonda, who sent me uplifting e-cards every day; Pete and Kelly, who sent healing scriptures and prayers to help keep me focused on the right mind set. My God is well able! I will be well and He gets all the glory!
I’ve really felt all those prayers, and it’s scientifically proven that people who are prayed for heal faster, recover quicker and have less pain. I believe it!!! Also, Kim and Chris, friends who have been through two transplants with their daughter, had advice and recommendations to make all of this easier to handle medically, like taking Zantac to settle my stomach from all the medicines and vitamins I was taking, which Dr. Westervelt agreed with.
June 25, 2013: Bone marrow biopsy. Yuck! I will say that the nurses, technicians etc. in the cancer treatment center at the hospital were so great. They were very sensitive to my anxiety and gave me as much information as they could to help me understand what was going to happen. They didn’t make me feel bad or childish for being nervous and scared. The procedure is not great — but it is quick. We prayed through it, and I was only in pain for a few seconds! My back was sore again for a couple of days but really not bad.
June 29, 2013: We had a 110th birthday party for 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 really 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. Thank you Lord!
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!
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. Thank you Lord!
July 1, 2013: It was time for the appointment with the oncology doctor – the results of the bone marrow biopsy. 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. We were so happy and praised God all the way home. It’s the first good news we’ve had in a while.
July 3, 2013. We’re going on vacation. We had already paid a deposit on a cabin, had made arrangements for someone to watch our dogs and house — we were going to Corydon in Southern Indiana and enjoy a break. I needed this! We were going to Corydon because we felt that this is where God had been showing us was where we were supposed to start a church.
We took our 12-year-old granddaughter with us, and we had a great time. Dr. Westervelt wasn’t happy that we were going, but he needed to just understand. What I didn’t know at the time was that my creatinine level from the July 1 labs was 4.05. He 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), make sure to drink lots of water and get enough rest, etc. But I felt really good and had a wonderful time. We went canoeing on Blue River (I paddled a little) and explored the many caves in the area. We truly fell in love with this little town and can’t wait to get our house in order and move. 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 5 hour infusion. I’m praying that it does exactly what it is supposed to do and “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!
If they do, we’re good for a while. If not . . . I guess we do it all again in a couple of months.
Some thoughts today:
Thank you to my family and my church family for your prayers. You’ll never know how much you mean to me, and I truly feel your encouragement and support.
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. Think about it.
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.
I checked in, they took vitals (weight and BP etc.) I then was hooked up to an IV for 2 hours of just fluids, this was OK, just didn’t know when we got there that it was going to be 5 hours…they also gave me some medication for nausea with the second bag of fluids, next 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 5 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 that I was told was that Dr. Westervelt had set me up for this treatments every 28 days or so. I told the nurse that I would only need this one, she said “uh, OK”. I have to tell you 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.
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 over this news. Things are looking really good. The fear of 3-6 months for possible death, dialysis and transplant has been beaten back to a much later time frame. I will continue to have labs done weekly. Dr. Westervelt would like to do at least 2 more chemo treatments. I’m not happy about putting more toxic chemicals in my body and my numbers dropping with the Prednisone have been good. So, we’ll watch the numbers for a couple more weeks and then decide more chemo or no. Long term use of steroids is also not good, so I trust my doctor to know when to reduce the steroid dosage etc. We also want to get that creatinine level under 1.1 (high normal). But I still have blood in my urine and that means that the crescent formations are still active. Only new thing is a low grade antibiotic to help keep me from developing any infections from the compromised immunity. It’s all overwhelming at times…but it’s better and that’s OK for now.
Wow! This has been just an amazing couple of months and it’s only going to get better! Count on it! Thank you Lord.
July 24, 2013: Creatinine 2.7, up but not to worry, this isn’t a big jump from 2.2 and it’s still in the 2’s so it’s all good.
July 31, 2013: Creatinine 3.0, up too much. The doctor wants to schedule the 2nd chemo. I’m going to do it and be praying that the numbers drop again. God I’ve trusted You to have the drugs do what they are supposed to and no side effects, so how can I say no to more drugs if they are only going to help and not hurt me. I will lean on You and KNOW You are my healer!
Aug 7, 2013: Creatinine 2.6, down! Yea! Dr. W. says that my new normal may be levels that fluctuate between 2.5-3.0 and as long as we stay down in the 2’s, he’s not concerned.
Aug 9, 2013: Chemo #2. Only thing that has bothered me is that the steroids have made me have chipmunk cheeks, guess I’m pretty vain to be so focused on that. I mean I have no other real issues, pain or anything so why the face is an issue is probably stupid, but I just don’t look like me right now. If all continues to go well with this treatment and the labs next week, the doctor has said that he will begin decreasing the Prednisone (steroid), so maybe I won’t have chippie cheeks for long.
Aug 16, 2013: Dr. appt. Labs from Wednesday were Creatinine at 2.5, down and that’s good. Dr. is very happy with where my numbers are in general, but the kidneys are still only functioning at 25-30%. He also is glad to say that I’m really healthy in all other respects and so he advises being proactive. In other words, he wants to go ahead and get the ball rolling for the kidney transplant! I was floored! I had myself so convinced that I would be able to get my numbers to a point where a transplant wouldn’t be necessary, that I could go into maintenance mode and just watch my diet and take some meds and be good to go. I’m doing well and the Doctor absolutely does not want me to go on dialysis. Disappointed…very disappointed. When you believe something so strongly, it can be difficult to let it go. I cried a lot that afternoon and cried with Sean in the evening. I was so upset by this news, it’s hard to describe. But after talking with Sean and seeing that this is a good, positive move from a standpoint of victory over this disease as opposed to not doing the transplant and having the disease in control, I just had to get my head in the right place.
September 6, 2013: Third chemo time, this was really tough for me as I didn’t want to do it but the doctor felt we should try one more. I felt really crummy after this treatment, no side effects, just lots and lots of blotting from all the fluids.
September 13, 2013: Met with Dr. Westervelt and he (and I) decided that we would do no more chemo. My numbers were still stable and we would just keep things going. He did reduce the Prednisone to 40 mg and said that if things looked the same next month, he would reduce it again.
October 11, 2013 and November 15, 2013:
Met with Dr. and labs indicated things were still around 2.5 and I had reached a plateau. My Prednisone was reduced again to 20mg in October and 10mg in November and I was really feeling pretty good. The dates for my transplant evaluation were set now for November 19 & 20. I’m excited now to get a move on with the transplant and have a normal life. What I didn’t realize until the day of the transplant evaluation was that I had accidentally reduced my Prednisone to 5mg by mistake.
November 19 and 20, 2013:
Came to UNMC at 7:30 AM for blood draw (14 tubes!) and an EKG, watched a video about kidney transplant, had a TB test, had a meeting with the nutritionist and the pharmacy financial person, who talked about how much the after transplant drugs would cost etc. We then went and had lunch. Came back to the transplant center and met with a PA who was to do a health history and physical. She was looking over papers and the computer and asked us why I was there. I said that my doctor wanted to be proactive and get me a transplant before I needed dialysis. She said “well from what I can see from your labs today, you are NOT A CANDIDATE for a transplant!” We were flabbergasted. She told us that my creatinine level that day was 2.04!!!! It has never been that low! This is amazing! We met with the transplant nephrologist and he agreed that I didn’t need a transplant. They wouldn’t even need to see me for a year! He said that they would cancel all the rest of my appointments for the transplant evaluation. My God is so good!!! The bible says that God knows the desires of your heart and he will take care of you. Well He certainly did that. I didn’t want a transplant; I wanted my numbers to be at a level that was maintainable. I’ve gotten just that.
I am now off all of the medications except for that 5mg of Prednisone.
December 5, 2013:
Didn’t see Dr. W. in December because of holidays etc., there was no time. But he did call me and said my creatinine level was 2.09 this time. Still so much lower than he ever thought it would be.
December 26, 2013:
Sold our house! It’s moving time!
January 2, 2014:
Turned in my resignation from UNMC. Retiring and moving to Southern Indiana to start One Church. I will still be doing labs to monitor my creatinine levels and my annual physicals to stay on top of my general health.
February 27, 2014:
Came back to Omaha to visit my daughter for her birthday. Decided to go to UNMC and get blood work. Numbers were even better! 1.98! Can’t believe it, but so happy. Moving into our new house next week and can’t wait.
I will stop here and just let you know that I continue to do well and stay strong. We don’t know the number of our days and God says to always be prepared. This last year has been an eye opener for me to always be grateful, show love and pray always. Maybe one person will realize how short and special this life is and do the same.
This is an ongoing thing and I’ll update as I can. Thank you for reading along.
