Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support, prayers and words of hope and encouragement. Thank you for visiting. Below is my journey thus far with Polycystic kidney disease.
As a child I knew that I would have a chance of inheriting Polycystic kidney disease (PKD). I didn't put much thought into it at the time. At age 24 I was in the ER with severe pain and was told that I have ADPKD. This made me feel afraid of what my life might look like. After this first incident, I did not have many symptoms. Every 2-3 years I would have a ruptured cyst or infection that would cause severe pain. These cysts would cause bleeding for about a month and then my life would go back to normal. Every year I see a kidney doctor called a nephrologist, this appointment is depressing as it reminds me that I have a disease and thinking about the worst that could happen.
In 2017 I graduated from college and married my best friend, Adam. A few months into marriage we found out we were expecting. Two days later we miscarried. Losing a baby was devastating and challenging on our marriage. Shortly after the miscarriage I experienced debilitating headaches. Not many things helped me with relief. After about 6 months of migraines, I seen my nephrologist. He advised an MRI to rule out cerebral aneurysms because PKD patients have an increased risk for cerebral aneurysms. After discussing the finances with my husband, we decided it was best to have the MRI completed. After about four days of completing the MRI, we received a phone call from a nurse stating that I have two cerebral aneurysms. Wow. This was scary. What is an aneurysm? We were advised that a neurosurgeon's office and an interventional radiologist's office would be calling us to schedule appointments. We thought "what in the world is an interventional radiologist?" For the next two months Adam and I felt like we were living with a ticking time bomb. We prayed and trusted God with the process. On May 29th, 2018, I went in for surgery for a pipeline embolization device on the larger more serious aneurysm. After a few months my headaches became less and less. Praise God for guiding us and giving me longer life on earth.
In April of 2019, I was working a fulltime job that I absolutely loved. We became pregnant in June. I really enjoyed being pregnant. Sweet Lilian arrived via c-section on February 17th, 2020. We were so happy and blessed. 10 days after the delivery, I felt a sharp pain on my left abdomen and bleeding in my urine. We went to the ER. Sure, enough another cyst ruptured. We were also told that my kidney function had went down. After the pain was under control, I went to see a urologist because there was a concern that there may be some blockage. I went in for an exploratory surgery to possibly place a stent on my ureter to help pass urine. Thankfully, no stent was needed and within a few weeks the bleeding stopped, and my kidney function increased. We cared for Lily as she reached each milestone, and I worked my fulltime job. About June of 2020 I started experiencing nausea. I was told by my OBGYN that I had an umbilical hernia. I thought that maybe if I have the repair surgery completed that I may have relief of the nausea. I had the hernia repaired November 2020 and I did not have relief from the nausea. By January 2021 the nausea was so strong that I struggled to get up for work in the morning and nursing Lily was straining on my body. These changes saddened me because I enjoyed nursing and was scared that this would be my only time that I would experience this. By the end of March 2020 my co-workers noticed a change in me. I had experienced pain that would come and go but now I was having pain that was daily and more consistent. This was devastating. My co-workers encouraged me to take all the time off I needed and come back when I was ready. I knew that this would not be a short break and would require something drastic to combat my symptoms. With all these disappointments, Adam and I continued to trust in Him.
And so our journey to a pain free life began. We spoke with a urologist at UW Health in Madison, and he was very confident that I would benefit from a cyst decortication surgery on my left kidney to reduce the pain. We went in for surgery on December 3rd, 2021. This surgery was a 9-hour surgery with over 100 cysts decorticated and 1 Leiter of fluid removed. I stayed four days in the hospital and three of the days I was on a fluid only diet. Adam stuck out the four days on a hard metal chair. Thank you for always supporting me Adam, even if it means you have to sit on a hard metal chair. Once we were released from the hospital, we were glad to have this behind us and see our little Lily. After a week of rest the pain got worse and never got better. We were back to square one on this journey. We continued to ask God for guidance. Many family members and friends were praying for us. My sister Sara and our friend Mary, both encouraged us to seek help from Mayo Clinic. We did not know much about Mayo Clinic at the time only that they were some of the leading doctors in medicine. I called to schedule a consultation and before we knew if we were traveling to Rochester Minnesota. The nephrologist we met with stated that my kidneys were very large and that I had the very rapid progressing gene for the size of my kidneys, my age and my height. She also said that because my kidneys were still functioning, she recommends a nerve ablation surgery to eliminate the pain by burning the nerve. She stated that this can help with the pain for weeks to months. On May 16th, 2022, I went in for surgery. I stayed three days in the hospital and again found that the surgery brought on more pain. After this failed attempt we met with several pain management doctors to try other ways to reduce the pain. We tried several different pain medications. Some helped reduce the symptoms but never fully took the symptoms away. We tried different nerve blocks, spinal cord stimulators and foam sclerotherapy on some of my very large cysts. Still, we could not combat the pain. Adam and I always knew what I would need to eliminate the pain, but we could never find a doctor willing to do this for me. I attempted to contact the transplant department at UW Health many times but never received a phone call back. My many nephrologists over the years always said the same thing "no surgeon will remove your kidneys while they are still functioning." We were very discouraged but continued to trust God whole heartedly.
One day in October 2023, my pain was getting the best of me, and I was losing hope. I cried out to my sister Sara. She immediately got on the phone and called UW Health stating that I am in severe pain, and I need to be seen by the transplant team. Within 2 hours I received a phone call from UW Health. The lady on the other end asked some general questions. She then asked what my eGFR (estimated glomerular filtration rate) was... I stated "34." The lady said "well, we do not normally see patients for kidney transplant until they are at eGFR of 20 but I am going to get you started because of your situation with the pain." Wow, this was our first miracles of many to come. The lady on the phone stated that I will be getting some paperwork in the mail and once I return it, it will be 6 weeks before I hear from my transplant coordinator. So, we waited. About mid-December 2023 we received a phone call from my transplant coordinator. Praise God. After answering some more questions, she also stated that they would not normally see me because of my kidney function of 34 but she is going to bring me in for the evaluation anyway because of my pain. Wow, this was our second miracle of many to come. We were scheduled to have the transplant evaluation on January 22, 2024. Adam and I were thrilled that UW Health was willing to have a conversation with us about future nephrectomies (removal of kidneys) and a kidney transplant. We prayed that they would help us, that we would continue to trust Him and that His name would be glorified through us.
On January 21, 2024, our church, Faith Alliance, prayed and anointed our family and many other church members with oil. This gave healing from God that removed fear and anxiety that was on us in preparing for my transplant evaluation. On January 22, 2024, we had my transplant evaluation and met with several members of the transplant team. When meeting with my coordinator, she seemed very confident that the surgeons would be willing to help me in some way. My coordinator stated that the team we met with today will go in front of a board of doctors on Friday, January 26th and she would call us later on that day to tell us the decision that was made. We left the hospital optimistic but did not want to get our hopes up. As we waited for Friday to come, we prayed. We prayed not only for help with my pain but that our faith in Him would continue no matter the decision of UW Health. Wow, this was our third miracle.... He really has grown our faith in Him that we would continue having faith in Him even if it meant my pain would continue. On January 26th, we received the phone call from my coordinator. She states, "the board is willing to remove your kidneys!" Wow, this was our fourth miracle. Praise God.
Currently we are waiting for a phone call for an appointment to meet with the transplant surgeons to discuss the plan. Look for updates on our CaringBridge page. Our future is unknown. But we know that according to Romans 8:28 that all things work together for good to those who love God, to those who are the called according to His purpose.
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