A friend in need

Story

Hi, my name is Terry Finklea. I am a licensed Home Inspector in the state of Ohio, and some of you may know me from my business, Arch City Home Inspections or Finklea Services. Others know me because you’re my friends and family. I’m reaching out because I need your help. Jen and I are looking forward to when I’ll receive my kidney transplant. We’re both excited for what that will bring, but also know there will be expenses to cover for us. Jen will likely have to go on FMLA leave for the first month to transport me to all my appointments. Again, this comes with a pay cut. Additionally, doctors anticipate I’ll be able to return to work after 3 months of recovery and quarantine, which is typical to allow my body to get used to the anti-rejection medication. Finally, we offered to cover any costs our donor family incurs. They mean a lot to us, and we don’t want them to have to worry about anything. I still have dreams. I’m still positive about my business growing. But I must keep it afloat, and right now I just can’t. I’m scared now, and know I’ll be in the same spot again in a few months. So, any help right now is appreciated. My goal is $15,000. I need to tell you about my history, what got me to the scary diagnosis of End Stage Renal Failure in October 2021, and the wild and often terrifying ride I’ve been on since. I was born with a birth defect called a Dual-Collecting System that killed almost all my left kidney, and about 25% of my right kidney. I underwent 7 major surgeries from 5-7 years old to reconstruct my urinary tract. I also had to go through dialysis in the 70’s and had a nephrostomy tube that drained urine from my right kidney for about a year as my body healed from the reconstructive surgeries. Fortunately, my teens were less eventful, though I did have another major reconstructive surgery at 15 to replace my ureters. They didn’t grow with me, and the doctors implanted cadaver ureters to fit my body. The staples and clips to hold the ureters in place, along with scar tissue where they are attachedat my kidney and bladder created problems for me in my 20’s, 30’s, and 40’s. Throughout those 3 decades, I had several procedures to get rid of kidney stones. The stones formed in part due to my kidney function and anatomy. The issue was passing the stones. Even the smallest stones could not pass through the narrow opening where my ureter connects. Instead, they would lodge in the opening creating a horrific amount of pain that put me in the hospital each time. I had lithotripsies where I would get put under twilight sedation and the surgeon would use sound waves to break the stones into passable sand-like fragments. The surgeon would always place a stent following this procedure so any of the fragments could pass without creating a dam-like build up in my ureter. I also had percutaneous stone extractions. Under general anesthesia, a radiologist would insert a guidewire through my back into my kidney, and the urologist would use the guidewire to move a small basket into the kidney and scoop out the stones. Unfortunately, a poorly placed guidewire during one of one of these. The last procedure of this type I ever went through – created a hemothorax, punctured lung. When I was in recovery I wasn’t waking up and my condition was declining. My oxygen level kept dropping instead of increasing. I remember hazy bits and pieces. They did a chest x-ray, discovered there was fluid on my chest, and I could feel the flurry in the room. I couldn’t breathe. Next, I remember white hot pain in my side, the sensation of the tube being placed, and the sound of fluid hitting the floor. To add insult to injury, the surgeon told me he never got the stones. Ureteroscopies are the final procedure surgeons used to retrieve my kidney stones. Under general anesthesia, the surgeon would maneuver a small basket up my urethra, into the bladder, and up the ureter to the kidney. During my most memorable experience with this, I had a doctor try three separate times to extract stones and he kept missing. On his third and final try, he pushed the stones back into my kidney. I was furious. I had to take time off, and due to my anatomy and kidney function, I was always admitted prior to a and kept a few days after for monitoring. I was missing a ton of work and not happy about it! And that sort of brings us to October 2021. I have been seeing both a urologist and nephrologist since I was a child. My birth defect damaged my body severely, and these doctors have kept an eye on my kidney function. One of the tests they used—and sort of the benchmark for kidney function—is the Estimated Glomerular Filtration Rate or eGFR, which is generated from a Basic Metabolic Panel blood test. Kidneys have tiny filters within them called glomeruli which remove waste and excess fluid from your blood and create urine. The eGFR is rated using numbers from 120 to 0. Those with healthy kidney function are in the 120-90 range; 90-60 shows signs of Early-stage Kidney Disease; 60-15 represents Kidney Disease; and 15-0 Kidney Failure. I have spent most of my adult life with an eGFR in the 30’s and more recently 20’s. In 2020, with upheaval in the medical community due to COVID, I missed my usual appointments and never had my kidney function tested. Last I knew, I was around an eGFR of 24 and felt fine. It was my wife, Jen, who saw my slow decline—how tired I was, sleeping in every morning I could, the metallic smell to my sweat, and general lack of energy. She called and scheduled the appointment and saw the test results before I did. My eGFR had gone from being in the 20’s, which isn’t great but normal for me considering my history, to 12. I was in Kidney Failure. It was a complete shock to both of us and sent my mind into a whirlwind of worry. How was I going to continue to support my kids. Was I going to get to see them grow up? Was I going to ever experience being a grandpa. How was I going to be there for my wife? I was, and still am self-employed as a home inspector. How was I going to keep my fledgling business alive? I am a one-man-band. A week or two went by and I started noticing right kidney pain—and it wasn’t the variety I knew. It also continued to grow and got so severe my wife took me to the ER. A CT scan showed severe Hydronephrosis, swelling, of my right kidney. This meant I had a high build-up of urine that wasn’t draining which caused swelling and risk of infection. I needed a nephrostomy tube… Oh joy! It was placed in the upper portion of my right kidney on October 21 st as an out-patient procedure. November 1st my wife was rushing me to the ER, again in extreme pain, this time with a fever. My diagnosis, Sepsis. The cause was the lower portion of my kidney not draining, so I got another nephrostomy tube in the lower portion, some IV antibiotics, and I was sent on my way within a few days. Over the next few months, I had a few pointless telehealth visits with my urologist who was angling at a “heroic” reconstructive surgery that likely would have caused more harm than good if I had gone through with it. I also developed severe pelvic floor pain that started over the holidays and would come in intense waves. On January 2 nd of 2022 the waves had gotten so severe that my wife was taking me to the ER again, though this time I had a Urinary Tract Infection or UTI. I was given antibiotics and avoided an inpatient stay. When the pain returned a week or so later, my urologist ordered more of the same antibiotics. Eventually he performed a cystoscope to look for urinary tract blockages and removed my top nephrostomy tube—which thankfully I did not need. But when the cystoscope didn’t show anything, my urologist simply prescribed more of the same antibiotics. Not only was this painful, but incredibly frustrating. At least at some point in February the doctor’s nurse practitioner tried a different approach and prescribed medication for bladder spasms. She explained they can be incredibly painful and are often brought on by stress. Bingo! The medication worked. I wish I could say 2022 got better… and at some points—two to be specific—it did. But for the most part, my health got worse, as did the procedures and hospitalizations. I was forced to take time off I couldn’t afford, and all of this has taken a toll on Jen and me emotionally, physically, and financially. In February, my nephrostomy tube came out in the middle of the night. My wife chugged some espresso, bandaged me to keep me dry, and it was off the ER at 2a.m. I had to get my nephrostomy tube replaced. Cleveland Clinic’s Kidney Transplant Program. I went through stress tests, an EKG, met with a case-worker, transplant surgeon, another urologist on the team, a social worker, and had an impressive amount of blood drawn for lab work—they drew enough to fill a good 20 or so test vials. Now all I had to do was wait for UNOS to approve my transplant listing and I would start accruing time toward receiving a kidney transplant. Jen and I were excited that I might get a new kidney before I needed to go on dialysis… April and May were uneventful. Then in June, I had an awful experience with a nephrostomy tube exchange. I was still receiving care from OSU doctors and had my exchange outpatient at OSU like the others. It was a normal procedure, same twilight sedation, only this time I never saw the nurse reconnect my post procedure antibiotics when I was moved back to my room, and I forgot to ask. Jen always monitors me on procedure days and took notice when I started running a fever. When I started shaking violently, she rushed me to the ER. I think we’ve all experienced what doctors call rigors – it’s the chilled feeling you get when you’re sick and the shivering that comes with it as a method of raising your temperature. My shaking got so intense I couldn’t walk into the ER; it took several tries to get an IV in my arm and my body ached. I had sepsis. OSU admitted me and treated me with aggressive black-box antibiotics, which are known for nasty side-effects. And four days later when I was discharged, one of those nasty-side effects appeared. I could barely walk. I went to a follow-up appointment with my Primary Care Doctor and asked what was going on. He told me the class of antibiotics I was on can cause tendon rupture, and I was clearly susceptible to this side effect. With a warning about never going on them again, he told me I was lucky this time and my chilles tendon would recover with stretches and rest. That put me on crutches, then use of a cane, which put me out of work about a week and half. July, August, and a nephrostomy tube in exchange in September were all uneventful. I suppose it was a sort of calm before the storm… On October 22nd, my wife was rushing me to the ER again. I had a fever, rigors, and severe pain. I was admitted with sepsis. Again. This time due to a complicated UTI. My wife also switched my care from OSU to Mt. Carmel at this point for several reasons. First, she had a conversation with the radiologist sometime after I was hospitalized for sepsis in June. The radiologist told her, “Oh, sepsis is just a normal part of this.” Sepsis, while a known risk in my case, should never be considered normal. Being septic meant I had bacteria in my blood stream. I’m glad my wife kept a close eye on me and took me to the hospital in these situations because sepsis is often deadly. Without treatment, bacteria in the blood stream quickly advances through the body, attacking,the major organs, and can kill a person in as little as 12 hours. Additionally, my nephrologist at OSU had gone on sabbatical without notifying me. My urologist also more or less lost interest in me when I vetoed the heroic reconstructive surgery he suggested. And finally, my wife switched my care to Mt. Carmel East because it’s a lot closer to home. And it was a good move. During my stay, I found a new urologist, a new nephrologist, and an infectious disease doctor who took an interest in my care and took my recurrent bouts with sepsis very seriously. During my hospitalization, the urologist removed my nephrostomy tube and placed a Double-J stent to help drain my kidney. I was discharged a week later with a prescription of antibiotics. Its a good thing I liked Mt. Carmel East because I was back within a week, on November 6th. I was septic again due to a complicated UTI. During this stay along with being treated for sepsis, I also met with a vascular surgeon for vein mapping at my urologist’s request. He cautioned me that dialysis was no longer an if, but a when. I opted for hemodialysis which replaces kidney function by filtering your blood through a machine to remove waste. I needed the vascular surgeon to pre-emptively create an access point in my arm so it would have time to heal before I needed dialysis. I was discharged 4 days later with a vascular surgery date and a compromise from the infection disease doctor. He knew how much I needed to get back to work, so he agreed to home IV antibiotics. Radiology placed a line in my chest and my wife took me home about an hour later. I was initially prescribed 3 weeks of IV antibiotics. Homecare nursing made an initial visit and taught us the ropes and Jen and I fell into a routine: Wake up, hang the antibiotics and have coffee, get to my scheduled home inspections, come home, have dinner and hang the second dose of antibiotics, rinse and repeat. During this time, I had the vascular surgery. It was painful, and the experience I had while healing was odd. But overall, it was uneventful. I finished my first course of antibiotics in early December, went a few days off the antibiotic, and the pain and fever returned. A quick call to the infectious disease doctor, and I was back on another three-week course. I was also under supervision of Mt. Carmel Home Care at this time. A nurse would come to our house every Monday morning, draw blood, and take my vitals. About this time in early December, the second amazing thing of 2022 happened. I had just started my second 3-week round of IV antibiotics and a dear friend, Tom, surprised me with a priceless gift. He offered to donate his kidney. I cannot express how this continues to overwhelm me…and my wife. The gratitude we feel is immeasurable. And the closeness I have with Tom, Jen has with Ronni his wife, and that we have with their two daughters Kati and Keri is truly treasured by both of us. I cannot tell you where Jen or I would be without this amazing family. He is not a direct match however at Cleveland Clinic, if he gives his kidney, I get a kidney. So, the holidays passed; I started the third round of 3-week antibiotic treatment in January; and on February 6 th , I had the Double-J stent replaced. At this point my doctors were cautiously optimistic about the infection going away, so the antibiotic treatment was discontinued after the procedure. It all went well—I didn’t have any pain or fevers. So, Jen felt comfortable volunteering to take care of her sister post knee-replacement surgery about 5 hours away from me in Michigan. Jen left on February 21st . By the afternoon of the 22nd , Tom was rushing me to the hospital with a high fever and rigors. He came to check on me when Jen couldn’t get a hold of me. She had a sense something was wrong, and it was. Turns out I had COVID and was treated for acute respiratory failure. I reacted well to the antivirals though and was discharged on the 29th —the same day Jen got home. We made it about two weeks, and Jen was rushing me back to the ER on March 13th. I had another high fever and rigors. Would it ever end?! This time I had COVID pneumonia. It took a few days to get my symptoms under control, I officially started dialysis, and was discharged on March 19th with outpatient dialysis scheduled. Jen hit her breaking point emotionally at about this time and applied for short term disability. She has her own health issues and needed to step away from work to take care of herself. Fortunately, my treatment started getting easier. My Home IV antibiotics stopped in February—and while my hospitalizations at the end of February and mid-March slowed things down—I was now healthy enough to get the line taken out of my chest and had it removed March 31st . Four days later I was sharing the good news—that I was finally infection free—at my annual check in with Cleveland Clinic. I had more testing and blood draws for lab-work of course. Jen and I also met with my social worker and case worker. Then we met with the transplant surgeon and discussed my donor, Tom. We knew after the two days of testing he underwent, that while he was healthy enough to donate, he was not a match. That said, he could still help, and still wanted to. The transplant surgeon explained he would create a chain of people – those who wanted to donate to a loved one but didn’t match, and those who needed a kidney. Through this cross-matched chain, the surgeries are done in tandem; meaning I could still get a warm kidney, placed directly from a donor in the chain, into my body, and this would give me the best chance at a quicker and healthier recovery. The transplant surgeon also recommended removing my right kidney due to the number of infections I’d had over the past year and a half. He didn’t want me to get another infection. And while failing kidneys are not typically removed for kidney transplant, keeping mine was too risky. So, the nephrectomy was scheduled for May 24th . Jen was still dealing with a lot medically and emotionally, so when her one month of leave was up at the end of April, she requested an additional month. This came with a standard pay cut, but also created some stressful pay issues for Jen she is still trying to work out. The nephrectomy went well. The surgeons removed my kidney via robotic laparoscopy with hand assistance due to scar tissue in the area. They wanted to limit bleeding, which they did, to prevent a was in a lot of pain. A CT scan showed excess air in my abdomen and free blood. The local ER coordinated with Cleveland Clinic, and I was transported there via ambulance. Not a very fun Memorial Day. Jen got everything at home taken care of, including finding care for our pets (thank you so much Tom and Ronni! We cannot even count the number of ways you continue to help us!) and joined me at Cleveland Clinic that evening. I was rushed into emergency exploratory abdominal surgery in the wee hours of Tuesday morning. Fortunately, or unfortunately, the surgeons didn’t find anything. I also woke up with staples closing an incision that goes from 4-inches below my belly button all the way up to my sternum. They cut through all my abdominal muscles. When the surgeon talked to my wife Tuesday morning, she explained how thoroughly they explored my abdomen and how they had searched everywhere for the source of the air and free blood. Along with the nasty stapled incision, I also had a nasal gastric tube to keep my stomach from expanding with gas, and a drain on right side of my abdomen. The first two days were absolute hell, but by the third day, things were getting better. For one, the stupid NG tube was gone. And shortly after, they took out the abdomen drain. I continued to heal and was discharged Saturday June 3rd . Jen stayed in Cleveland with me again, and we made it back to Columbus the following day. Jen also returned to work on Tuesday the 6 th . And that takes us to present day where I’m still recovering and likely will be for another week or two. Fortunately, Jen works from home, so she’s able to keep an eye on me. First, I want to thank you for reading my story. Second, I hope you can see the impact my health has had on us. If you know me, you know my work-ethic. I do not qualify for disability benefits because I have not stopped working long enough to meet the requirements. Even through my bouts with sepsis and being on IV antibiotics, and having a nephrostomy tube with a drain bag attached—or at one point, two tubes and two drain bags attached… I kept working. The procedures, hospital stays, and dialysis three times a week have impacted us though. Especially recently with the pay cut Jen experienced and the fact that I have not been able to work since May 23rd and know it will be a little while before I’m back on my feet. Again, thank you for caring. God Bless. Terry