Kari’s journey was a difficult one, but one that she fought valiantly every day for many, many days. Her story unfortunately doesn’t have a happy ending and we are still reeling from the loss of a daughter, a sister, a wife, a mother, a niece, a cousin, a friend, and a mentor.  We were a very close family as you could probably guess from her prior posts, and as her mom, I knew her health issues intimately. If I could have, I would have taken it all from her, traded places with her, suffered for her, and yes, even died for her if it meant she could have the long, healthy, happy life she so deserved.  I don’t know anyone who was stronger or braver in spirit – it would have broken many of us a long time ago.  But not our Kari.

September 12, 2021 marks the 4^th anniversary of the transplant and all that feels like ages and ages ago.  I’m going to attempt to finish her story the best that I can. I know I won’t do it justice as it will be missing Kari’s raw honesty, humor and oh so sarcastic wit. And I hope she doesn’t mind that I do…

When I received access to her blog, I noticed that she had a couple of drafts started for various parts of her journey. She was coming to the really rough parts and I could tell by what she had started that it was very difficult, still, to talk about. I can’t finish them for her and won’t publish them as is. That part of her story is about the mental trauma she struggled greatly with. Her transplant went sideways, and I only know how hard it was for us to watch her go through it, not what she was really going through.

We talked about it a lot afterwards. She worried that the person she was during that horrible, drug-induced time was who she really was. She hated herself for the things she hallucinated about, even though I tried to convince her that they didn’t really happen. She said that maybe sepsis was like a truth serum, bringing out who she really was as a person – kind of like those people who become brutally honest when they’re drinking. I told her she was not that person – it was a combination of severe PTSD and a horrible drug cocktail, both of which were out of her control. But that part I can’t write about – I wasn’t the one living it. 

Kari would have found a way to share those difficult words eventually. She would have also written about the additional surgeries she’d had, and the toll those played on her mental (and physical) health. She would have written about the disappointment of healing from one thing only to have another thing happen shortly after. She would have written about self-loathing, how she hated the mess her tummy was in from that horrible surgery, and the struggle with the side effects of being on anti-rejection drugs. She would have written about how she struggled with asking the people around her for help when mobility became an issue, or how her, “I’m fine mom,” responses were only wishful thinking on her part, even though I knew that. She always thought she could trick me, but a mama always knows. And she may even have written about the heartbreak of her new lease on life not being what it should have been or anywhere close to what her team of doctors had promised her.

One of Kari’s motivational songs was Alicia Keys’ “Girl on Fire”. She played it often as she recovered from her transplant and subsequent surgeries and then later as a workout song as she drove herself to get strength and normalcy back to her life. Now that she’s gone, I seem to hear the song at some point every single day and, when I finally looked up the lyrics recently, I realized it truly was her song. The song is really about toasting to strong women in general, but my interpretation is of one brave young woman, fighting one challenge after another, trying to bear it all on her own, in a lonely world. Kari’s determination to live was her fire.

Once, during one of her dialysis sessions, we talked about her regrets – the shoulda/woulda/couldas. She was angry and scared – this was a new, and very serious path we were now on. We had taught our girls that there is a consequence to every action and that what’s done is done. What are you going to do to make it better now? What is the lesson you’ve learned? As much as we would have liked to wind back time, we couldn’t do anything about what had brought her to this point. What we did see was that if she was able to tell her story and help just one person learn one single thing, then it would be okay.

No parent should lose a child – that’s not the way it’s supposed to go down. I knew in my heart that Kari didn’t have a long life ahead of her, but it doesn’t lessen the heartache we all have now. Our worlds are much darker without her bright light. Kari inspired us to not be pussies in life. She was thrown things most of us would not have been able to handle. Her story is an everlasting reminder not to sweat the small stuff. People go through their own shit, but in the grand scheme of things, most of our daily stressors and worries are going to be long forgotten in five years’ time.

As open as we were, I knew she still kept things inside sometimes – she tried so hard to hide her pain on the bad days, but it was always visible in her eyes. Rarely did she ever complain or wallow in self pity. She also didn’t always ask for help – or even admit to herself that she needed it – but that’s the bravery part, and maybe a bit of stubbornness. She was the warrior who refused to give up because there were still battles to be won. I would give anything to have her back. I can’t put into words how much I miss her and how most days my heart actually hurts from the loss of her – but I can still hear “Ma? How you doin’ girl?” For her, still, I get up in the morning.

I’ll end her story by reminding you all that life is short. We all have special people in our lives that we take for granted. We don’t take nearly enough time to stop and smell the roses. We need to slow down and appreciate the things in life that are precious to us. We all have struggles in our lives and everyone has a story. We have to fight those struggles like Kari did. She had so many opportunities to give up, but she always found the will to keep going and I can’t begin to imagine how deep she had to dig some days to do it.

The time we have on this earth is limited and never guaranteed, and while no amount of time would ever be enough, I’m grateful for every second that I had with Kari.  She was our girl on fire, and I hope everyone remembers her that way!

A few days after I returned to the hospital, they had to remove my pancreas. That surgery was on October 5, only 23 days after I became a non diabetic. I was septic. The first sign that there was something seriously wrong, I was hallucinating that my kids had been kidnapped. In this false vision, I was the only one who could save them, and no one would let me leave or unplug my IV’s. The nursing staff had to call my parents at 2am to come and try and calm me down.

I remember bits of pieces of my hallucinations, that I think lasted about 10 days. I scolded my son for not sitting up straight, while buttering a blanket so he could have some lunch. He was so pale, and I was trying to take pictures of him so he could see how pale he was. I later scrolled through my camera roll on my phone and wondered why I had dozens of pictures of a blood pressure monitor.

I’ve heard from others that had seen me in that state, and I guess those stories aren’t really mine to share. I only remember some of them, and I think I have some vague recollection of some of the things that were really happening. I remember sitting on stretcher outside of the operating room waiting for them to put me under to find the cause of my infection. I was awake for days, and they tried to give me Ativan to calm me down, but it made me worst. I became violent and belligerent. I wasn’t scared because I didn’t’ know what was going on, but I’m sure it was cause for concern for my family.

They had consulted with psych who would come down and talk to me. By the second or third visit, I knew their routine. They would come in, and ask if I new where I was.

My name is Kari. I am at the foothills hospital in room ####. I had a kidney transplant. I haven’t had a hallucination in 3 days.

The doctor would look at my mom or corroborate my story. She would shake her head. They would consult in the hallway.

Things were not looking good. I would spend hours looking up at the ceiling, trying to keep my bed from floating. Some of my hallucinations were calming, like flying over the beaches of Mexico, but some were scary and had me screaming and shouting through the night. I don’t think I realized at the time, or even now, how dangerously close to death. To know that my family was there every day even if I wasn’t, makes my heart swell. I don’t know what would have happened if I didn’t subconsciously know they were there advocating for me (NO MORE ATIVAN!).

So the new kidney is functioning well, but what the hell have you done to me? Obviously I made it through so I could share some of these stories with you, but missing days upon days of my life still messes with my head from time to time. It was a really long few weeks of hell for those who were following my journey real time. Even though I made it through those weeks, I was still far from going home healthy. We’re still only halfway through my hospital journey.

The next thing I remember was waking up as they rolled my stretcher into my room. I did it! It was the middle of the night when they rolled me back in. Even though I was pretty out of it still, I insisted on being the one to call my loved ones and tell them I was done. My dad answered first. I’m out Dad, they did it. I love you. Then my mom, sister, husband. I will see you guys in the morning.

I am certain a slept most of the next week. I have some vague memories of seeing visitors, getting up, learning how to sleep on my back instead of my side. The new kidney was functioning well immediately and I DID NOT HAVE DIABETES! After a few days, or a week, it kind of all runs together, I was up walking. I had gained close to 70 lbs of water weight. None of the comfort clothes I brought fit, I couldn’t wear my wedding ring. I wasn’t counting carbs, and I wanted to go home. They estimate that you will be in the hospital for 10 days and I can’t remember why initially I was kept in longer, but I remember on September 25, 15 days post surgery and my birthday, I was allowed to have a day pass to go home and see my family. I cried, I missed home, and missed my puppies.

I was sent home on September 28th, 18 days after my surgery. My incision and staples hurt, but I assumed it would after a major operation so I had no reason to think anything was wrong. I did my morning blood work that day, and they prepared me to be discharged. I got home in the afternoon and spent a very uncomfortable but welcomed night in my own bed. I was looking forward to being able to recover at home. I had enough of being in the hospital.

The next day I had to be at the hospital for blood work again. My mom came in and took me back, I wasn’t allowed to drive for 6 weeks. I arrived home around noon. I remember feeling like I had just settled into a good spot on the couch for a nap when the hospital called. There was an issue with my blood work and they wanted me to come back. My white blood count was dangerously low. Really? Do you think this will be an overnight? She said I had better pack for the weekend. Well shit, there goes my nap! So I packed my bag back up and prepared myself for a few more days.

I do not remember getting back to the hospital or anything else for the next few weeks. There was an infection interfering with my recovery and it would end up being the reason that weekend stay turned into 85 days in the hospital. I haven’t posted in a while and it’s because it’s a difficult time for me to talk about, and I’m still not sure how to properly describe what that time was like for me, and my family. We are now able to laugh about some of the things that were scary at the time. Stay tuned for those stories too! Until next time!

When we last left off, I had just received a letter telling me that I was officially on the paired kidney/pancreas transplant list. I had just finished healing my incision from where they installed the peritoneal dialysis catheter and was scheduled to start my training on September 11, 2017. The week leading up to it was a busy one. I was settled in with the idea of being on dialysis for the long haul and started planning my return to work. We had tickets for 2 concerts that week, and I was planning a family reunion for Sunday, September 10. I was really looking forward to it, and felt that I could settle into a new normal. In a way, that brought me some peace. I wasn’t expecting a call anytime soon, so I was less anxious and ready to take on my new life. They tell you to keep your phone handy, just in case, but I was prepared to be waiting months, even years for that call.

The morning of the reunion, I was preparing to leave the house and going over the to-do list in my head. I was in a great mood and was so excited to see everyone. It was the reunion of all reunions. I remember very specifically that I was sitting on my bed putting my socks on, when I looked down at my phone. 1 missed call. Oh shit, that’s a hospital number. I stared down at my phone, waiting to see if the voicemail icon would appear. I never missed hospital calls. There it was. 1 New Voicemail. It must be the dialysis clinic, calling to confirm my appointment tomorrow. I picked it up and dialed in, while putting my other sock on. It couldn’t be the transplant people, I’ve only been on the list for 10 days.

“This is the transplant unit at the foothills hospital, looking for Kari. If you could give us a call before noon on Sunday, September 10th and page the transplant doctor. Thank you.”

Holy shit.

I teared up, and carefully dialed the number with shaking hands. When they don’t reach me right away, they start going down the list of my other contacts. By the time they paged the doctor, I could barely hear her over the call waiting notifications coming through my line. They go through all of the risk factors with you on the phone, and ask if you would like the organs. Yes, please. They advise you not to eat, and that they’ll call back in 6-8 hours after some testing to let you know if you need to go to the hospital. You’ll need to come on an empty stomach, so don’t eat anything else today. Got it.

I was in such utter disbelief as I walked through the house looking for my husband. He was on the phone, but hung up when he saw my face. They have a kidney for me!

Holy shit.

We had 6-8 hours to kill, so we decided we would still go to the reunion. I couldn’t wipe the smile off my face or the tears from my eyes the entire trip there. My immediate family already knew, but I decided not to tell anyone else until we got that second call just in case. I walked into my parents house and burst into tears as soon as I saw my mom’s face. We pulled ourselves together before the other guests arrived. I am still so grateful that I was surrounded by so many people that I love when that second call came. I quietly excused myself when I felt my phone ring in my pocket.

It’s go time! We all hugged, and cried, and then left for the hospital. It was 2 days before everything fell into place for the surgery to happen. We had waited, chatted, laughed, hugged, and played countless games of crib. We spoke about my wishes, should something go wrong. Before I knew it, they were rolling my stretcher down the basement halls of the hospital towards the operating room. You meet the surgeon, the anesthesiologist, and get the run down on what will happen before they roll you in. You transfer to an operating table, which is a very narrow flat, uncomfortable table that has two arms for your arms. Many nurses are preparing you, and the room, and it all happens very fast.

I walked in not knowing what to expect, and what was to come. All I knew was that my life was about to change. It felt like a new beginning, the beginning of the rest of my life, and I was ready.

Ok, here we go! Counting down from 10, 9….8……….out.

During my time on dialysis, I was also preparing myself for a kidney transplant. As I write this post I am reminded of a girl that I had worked with years before who had received a liver transplant. I remember wondering how she got there? How much her life would have changed when she found out she needed a transplant. Was she young? How did it happen? I remember thinking she must have felt so sick, and I couldn’t picture how you could go through something so life changing and just go on living your life. Her and I weren’t close, but I admired her. She seemed so free, and happy. She seemed to enjoy every moment. She later passed away, but I remember that she always had a smile on her face. So full of life.

How does one prepare for transplant, you ask? Tests. Lots and lots of tests. Stress tests, MRIs, PET scans, blood work and more blood work. A lot of waiting for appointments, fasting, many hours in a hospital. This was all completed in between dialysis runs. Because it was all booked through the transplant team they were good about booking around the dialysis schedule. As I think back to it now, the testing and all the waiting, it doesn’t seem as bad as it sounds. I needed to complete all the tests in order to get on the transplant list. So we started, in November 2016.

Getting on the transplant list will get you in line for either a deceased or a living donor. A living donor is ideal because the organ tends to last longer (20 years they say). A deceased donor organ would be in the 15 year range, although there are exceptions to both rules. At any point, a directed donation work up can be started. That means that someone steps up and says “yes, I want to donate my kidney to Kari.” Well folks, that person was my mother. I hated the idea of putting my mom through all the tests, and then potentially a surgery. I don’t know about you guys, but have you ever tried to interfere with a mother saving her child’s life? It’s a force to be reckoned with.

Now my tests weren’t nearly as grueling as my mothers. More tests, more appointments. Physical health, mental health, family history and never ending blood work. I still to this day hate that my mom went through all of that for me. It really was the best shot, coming from a relative. Around June of 2017, we got the official call that she was a match. We both cried. This could all be over with soon! One more test to go, but we were weeks away from getting a surgery date. I had plans to be back at work before Christmas!

Well, as it turns out, that last test was the one that decided she couldn’t donate her kidney to me. My mom is fine and healthy, but they like to be really sure they’re not going to jeopardize the donors health. I was driving when I looked down and saw my parents number on my ringing phone. My throat went dry. Why were they calling me in the middle of a week day? Something is wrong. When I arrived at my destination, I called them back. My dad picked up and said, “Mom got her test results back today. She’s going to be fine, but… maybe you should give her a call when you get home.” The next few hours were a blur. I can’t recall driving home, but I can picture me settling down in the bedroom with the door closed, and dialing my parents number. (Let’s be real, I pressed their name on my phone, who remembers phone numbers these days??). My mom picked up, but I’m not sure she said anything. Mom? Are you ok? She told me she couldn’t be my donor. It’s ok, Mom. I can do this. I’ve been doing this, and I’m fine. It’s not my time just yet. I love you so much, and I want you to focus on this little hiccup for you.

What I didn’t know yet was that my road to recovery was going to be very drastically different than what the “So you need a kidney transplant” booklet says, and I 100% know that I would not have been able to do that part without her.

So I decided that if i was going to be on dialysis a little bit longer, then I would get a dialysis catheter put in my stomach, so I could do paratenial dialysis from home. It runs for 8 hours while you’re sleeping, so I could potentially go back to work while receiving treatment every night. On August 25, 2017 I had the surgery, and I was slated to start on September 11, once the incision in my stomach had healed. While I was healing from that surgery, I received a letter in the mail. “You have been placed on the paired kidney/transplant list.”

I guess I’m settling in for the long haul and trying to get back to a normal life

Now where were we?

I’ve been struggling to write about dialysis, and wasn’t really sure how to start. So I guess lets start with what dialysis does. Dialysis filters all the toxins out of your blood when your kidneys can’t. Any fluid you consume while you’re not on dialysis weighs you down. Your body swells and you become lethargic. It wouldn’t be uncommon to feel nauseated leading up to your next run.

I had 2 tubes coming out of the right side of my chest. One for for dirty blood out, and one for clean blood in. I called them my cords. Dialysis runs were done 3 times a week for 4 hours. They made me feel nauseated and weak. They would pull up to 4kg (almost 9 lbs) of fluid off in one run (great weight loss plan, right??). The more liquid you consumed before a run, the more you would have to pull off. One of the hardest parts was limiting my fluid intake to 1L a day. So.. cereal or coffee today? Coffee.

Lets run through a typical dialysis day. I would arrive 15 – 20 minutes before a run. I’d sit with the others in the waiting room and wait to be called. We all kind of became friends over shared stories of struggle and triumph. We talk about how we got here, and where we were on our path to transplant. Many had been waiting for years, and that scared me. I wasn’t even on the list yet. I also felt saddened, knowing that some may not ever get their second chance, due to age, or illness. I was the newbie, and one of the youngest patients.

One by one we would be called up to the scale. Weigh in. Subtract the weight of shoes and air boots. The nurse would take me to my station; I’d sit in my chair and dig out my cords. The nurse would first sterilize them before connecting them to the dialysis machine. I was always fascinated when watching my blood start to mix with the saline solution in the tube. More often than not, I would start to feel nauseated so I would recline my chair and close my eyes. My hope was to fall asleep long enough for my stomach to stop turning, and my head to stop pounding.

Most of the time my run would go smoothly. If we try to pull too much fluid off, my legs would cramp and my blood pressure would drop and we’d have to slow the machine. The worst time was when I had to be disconnected to use the rest room. I hurried back so I wouldn’t lose too much time in my run. My nurse hooked me back up to the machine while I got settled back in my chair. Within seconds I felt light headed and nauseated. I had just enough left in me to grab her arm. She saw my face and before I knew it there were 6 nurses surrounding my chair. The machine had clotted. Blood pressure cuff back on, chair fully reclined, cold cloth on my head. We caught it in time, and I was back to myself in no time, but man did that scare me.

Other than that, it was pretty uneventful. I sometimes had visitors, which was always nice. My dad and I played crib. My aunt and I played board games. I had a small carry on size suitcase full of books, colouring books, cards, cross stitching and a cozy home blanket my grandma made for me. Sometimes I would nap, other times I would watch TV. We don’t have cable so it was nice to watch some day time TV.

Towards the end of the run I was always anxious to leave. I was hungry and wanted to get home to my family. At the end of the run they would clip off my cords and sterilize before unhooking me. I would gather my belongings and head off to be weighed again. I was starving and always had to bring a snack to hold me over until I got home.

I would feel the effects of dialysis for hours after I left. If we had taken too much off then my blood pressure would be low and I’d have to consume something salty, or drink more fluids to try and bring it back up. It was a very fine science to getting it exactly right. I was thankful that such a process existed to keep me alive and feeling somewhat normal. It was time consuming, and you couldn’t miss any runs. If I was having a particularly rough week, I would sometimes have to come in for an extra run. I’ll speak more of where I was in the transplant process in my next post, but the week before I decided I wanted to do a different kind of dialysis that I could do from home, I had to come in for 5 runs in one week. We were having trouble getting all the fluid off and it was filling up the space around my heart and in my lungs. More on that extra procedure to come!

Being sick can be a full time job, and it was sometimes hard to stay in a positive head space when time keeps flying by while you’re stuck in a dialysis clinic. It’s what you have to do to stay alive, and keep on fighting. So that’s what I did. I was so ready to get on that list and get a second chance. It was coming sooner than I had imagined…

The next part of my journey is dialysis. I’ve been having a hard time with writing about it so I thought maybe it would be time to talk about the mental toll being sick all the time takes on your emotions. This isn’t easy to talk about for me. These words come from my soul.

Having diabetes is one thing, it never goes away. I think I’ve written about it before. Having an illness that is affected by so many outside factors, and also impacts so many parts of the body can be tiring. As diabetics, we get used to it and when you take care of yourself regularly it becomes second nature. MMM… this sandwich tastes like 30g of carbs. Sometimes at night I would lay awake, terrified that my blood sugar would crash in the middle of the night and I would slip into a coma. When I did wake up for lows I always tried to be quiet and not wake my husband. Even writing that now I think how dangerous that could be if I was too low to reach the kitchen. I now keep delicious snacks or a can of pop next to my bed for those emergencies. My husband always says goodbye when he leaves in the wee hours of the morning. I always joke and ask him to make sure I’m still breathing when he leaves for work.

So now lets pile on some of the complications I have had because of the beast that is diabetes. For the most part, they are invisible to the outside world. What does someone with no kidney function look like? Can anyone tell I haven’t been able to keep any food down in weeks? Does anyone else see how dark and hollow my face has become? For a lot of those years I couldn’t even look at myself. When I was so sick and no one could tell me why I often wondered if it was all in my head. I would try and be strong, not think about it and have breakfast thinking that if I ignored how nauseated I was that it would stay down. It wouldn’t and I wondered if anyone at work knew how often I vomited in the bathroom.

Being sick also made me so weak. I remember having to take a break when I was brushing my hair because my arm muscles were burning. Honestly, I’m not even sure how I functioned back then. We went camping once and the whole way driving home I was throwing up in the motorhome bathroom. Gross.

I always hoped that people didn’t think I was faking it. I mean, how could someone be that sick and feel that crappy every single day? When I was working still, I didn’t miss a day. When I was off work I had some good days. It always made me feel bad about being on disability. I didn’t want to come back unless I could commit to being there 5 days a week, and I was far from it for a long time. I have known people that have taken advantage of the “system” and I refused to be one of them. Sometimes I felt like maybe I was just being lazy and I would try to do things that I’ve always been able to do, but in the end my body was making it very clear that I needed to slow down.

I had good days, and I had bad days. I had a lot of bad days, actually. I have clawed my way out of some dark spaces. I’ve struggled with feeling like I was a burden to my family, even though they have supported me throughout my entire journey. I’ve never been suicidal, but have had thoughts about how much easier life would be for those around me if I wasn’t dragging them down. I’m not proud of those days, but I am proud that I recognized I was in a bad place and sought the help I needed. I’m not sure how much of that was showing on the outside. I’ve always tried to be strong and positive and I think I’ve said before that it wasn’t to hide how I was feeling, it was a coping mechanism for how I was feeling on the outside. It can be isolating.

I now know my worth. I just told my mom today actually that I have loved this decade of my life. I feel like I’ve grown more into the person I want to be in these last few years. I know I’m not the only person that’s ever felt this way and my hope for this blog, and especially this post that if someone else is going through it I want them to know it’s temporary. It’s ok to be upset. It’s ok to be sad. Even now I have those days, and I embrace those days knowing that I will wake up tomorrow and it will be a new day. A new day to feel grateful. A new day to feel strong. A new day to be me. Keep your chin up.

So what happens next after you find out you need a kidney transplant? Honestly? I started to think about getting my affairs in order. It seems morbid, yes, but if something were to happen to me I wouldn’t want my family trying to sort through my life. Realistically I made sure my filing cabinet was organized and did the mountain of laundry that had been piling up on my side of the bedroom. I had a will already and I reviewed my wishes with my loved ones.

I also started a support group on Facebook and invited a few close friends and family to join. I wanted somewhere to post updates related to my health and not have to repeatedly explain it. Fast forward to today and that group grew to over 50 people and was more supportive and encouraging for me than I ever could have imagined.

I was more sick than I thought when I look back on it now. My head was cloudy, and I kind of just floated through the days. My failing kidneys were struggling to keep the fluid from building up in my swollen body. I was easily winded. I wasn’t often hungry. My heart always felt like it was going to beat right out of my chest. I physically didn’t miss a day of work, but my head wasn’t in the game. I went to all my appointments and followed all doctors orders.

In October I decided that I needed to take some time off work. My body was failing me and I needed to focus on my health. My employer was very supportive of this and with approval from my doctor we decided that I would work until November 4.

I was feeling good about it. It was time for me to take care of me. I was feeling strong until I had to tell my team at work that I would be taking some time off. I supported 14 people and to talk to them face to face and say out loud that I was sick was a lot harder than I thought it was going to be. I cried. Some of them cried. I also had to tell my peer group and hand-off some of my work tasks. That one was hard too, and I was thankful that my support person stepped in when she heard my voice start to crack. Many of my peers were spread across the country and had no idea I was even sick. We didn’t go into detail but I really felt the love and support of our tight knit team.

On October 26, 2016, almost two months after finding out I needed a transplant, I didn’t wake up knowing that day would be any different than the rest. I had been propping myself up to sleep because the fluid in my lungs was making it hard to breathe. I could hear my heart beating in my ears and I developed a hand tremor that made it hard to text. I called my nurse at the CKD clinic and told her what I was feeling. She called me back after speaking with my nephrologist and told me I needed to go to the emergency department. I finished my work day and went home to talk to my husband and pack a few things. I was so scared.

When we got to the foothills hospital (hereby known as the foothills), I remember struggling to walk from the parking lot to the building. The line up to be seen by triage was short enough that I was still out of breath when I got to the front. I explained my situation and what I was experiencing as she fitted my arm with a blood pressure cuff. Blood pressure 220/140. Shit. Heart rate 150. Shit. I went back to the waiting room and waited for my name to be called next.

I very vividly remember this wait. Trust me, it was not long. There was a lady there that was just livid that she wasn’t being seen immediately, because her doctor had told her to go to emergency. I remember thinking, calm down lady. We ALL have doctors that told us to come here. It’s called triage for a reason. The lady got so upset she left. I guess maybe it wasn’t an emergency? I often wonder what happened to her. I bet I waited only 10 minutes before being taken to the back. Because of this experience I have complete faith in the triage system. No, I do not like waiting to see a doctor but I feel like as long as I’m waiting, someone else who needs more medical attention than me is being treated.

By this time my parents and sister had arrived. My husband had left to take the kids to their moms house. I still didn’t feel as sick as everyone thought. Before I knew it I had wires and tubes and what felt like 10 doctors working on me. It wasn’t until I saw the look on my sisters face that I finally realized that I was in trouble. I had gone into congestive heart and kidney failure. SHIT.

They were able to stabilize me with some IV meds and I was admitted into unit 37. The kidney unit. They monitored me closely over the next few days and I distinctly remember the doctor coming in and telling me that I needed to start dialysis. But I’m not ready! I haven’t picked which method I want yet! I still have a week of work to get through! My world stopped.

October 30 they installed a dialysis catheter in the right side of my chest. I didn’t have an option to choose a method. I needed dialysis now. Within minutes of it going in, I was receiving my first dialysis treatment. I was terrified. I mean, we had learned about it, but what was it going to feel like? I called my husband and he came to sit with me. Just his presence makes me feel like everything is going to be alright. It didn’t hurt, and after my first 4 hour dialysis run I felt like I could breathe for the first time. Do you know when you’re camping in the mountains and you first open the motorhome or tent door and you take that deep breath of fresh mountain air? That’s how I describe dialysis.

I went home the next day with my new dialysis schedule. Three times a week for four hours each. This was going to be my life now. I was already exhausted and dialysis isn’t all clean blood and fresh air. It’s a whole new post on its own.

Until next time friends. Thanks for reading.

So maybe we should back up a little bit in the story.  About 5 years before I started having issues with my stomach, eyes and feet, my doctor had seen a slight decline in my kidney function.  She put me on a low dose blood pressure pill that was intended to protect my kidneys.  It didn’t sound serious; more of a preventative thing.  As you get older there a range in which your kidney function is expected to fall between.  Some people have higher function, and some people have lower.  It’s expected to be lower for even a well-controlled diabetic as part of the nature of the disease but I guess it had started to decline a little faster than we had hoped.  I wasn’t good about remembering to take them.  They didn’t make me feel any different, and I’m not really sure I understood how they were supposed to be helping me.

So suddenly I’m in my doctor’s office and she’s telling me that my function has dropped significantly since my last blood work.  She’s going to refer me to the chronic kidney disease (CKD) clinic.  I started seeing them on a regular basis.  I was assigned a nephrologist (kidney doctor), a nurse and a dietician.  I could call them when I had questions or concerns about my kidney health.   They really took care of their patients.

About a month before we left for our wedding I was scheduled to get a kidney biopsy.  Let’s see what’s really going on here.  At this point I remember it feeling a little more serious.  I had been somewhat procedure free thus far, and I had a fear of going under the knife.  I starting always bringing a support person with me to my appointments.  I found it easier to hold it together if I knew I had to put on a brave face for whoever was with me.  It also helped me remember all the details of the appointment.  What should I be eating?  What shouldn’t I be eating?  What signs should I watch out for when it comes to real kidney failure?

Kidney failure.  Could this be true?  Shit just got real.

My father was the one to take me to my biopsy.  It was my first procedure, and I was not really prepared for the list of possible complications.  I later learned that the possibility of death is a pretty standard potential risk and they go over it for most things.  I had to wait in the hospital for 4 hours after the biopsy to make sure there was no internal bleeding.  There wasn’t, and I was happy to go home. 

When I got the results back I believe my function was in the 20% range.  Not great, but not urgent.  I met with the CKD clinic often over the summer months and we monitored my function closely.  I had a really great support system, and I had a really great job that was flexible with all the extra appointments.

On September 2, 2016 I had a regular follow up with my nephrologist.  It was a morning appointment, so I had planned on just sneaking out of work for an hour or two and then coming right back.  I didn’t bring a support person.  I sat down in the office and Dr. Cheema touched my arm.  Your function has declined again.  I’m really sorry.  You need a kidney transplant.  I think I might have gone into shock at that moment.  I smiled and said ok.  She asked if I was alright, and I’m sure I said something like “it is what it is.”  A saying I despise, by the way.   She gave me a hug, and said that she would be referring me to the renal transplant program at the Foothills Hospital, and that she would continue to follow me until they could get me in.

I went back to work like it was nothing.  I mean I guess I knew it would be coming.  I actually remember joking with my coworkers that one day I might need one of their kidneys.  We laughed about who would be willing to donate, and who wouldn’t.  It suddenly wasn’t funny.  I don’t remember working the rest of that day.  I spent most of the hours wondering how I would tell my family and friends and to be honest, I don’t even remember having those conversations.  I was worried that I’d be judged the same way I was judging myself for not taking care of myself.  I should have tried harder all those times I said it would be different.  I wanted to go back and start fresh so I could save face.  How could I look my parents in the eye and tell them I screwed up?  It took me a long time to come to terms with that part of my journey.  I couldn’t live if I spent my time on the “what if’s” and the shame of all the years I lied about my health.  They happened and I can’t change that.  I also feel strongly that I started taking better care of myself at the right time in my life.  I didn’t die.  I overcame challenges that I haven’t begun to write about and I am a stronger person for it.  If I had not taken charge, I wouldn’t have had been given the opportunity to fight for my life, and enjoy a life worth fighting for.

I sat on the couch and cried that night, not knowing what was ahead.  I had my first appointment with the transplant team booked for the end of November.  The goal was to try and preserve as much function as possible while I did the transplant work up, which I will tell you about in another post. We wanted to avoid having to go on dialysis, but were learning about the different kinds and their pros and cons.  I was scared, but I vowed to remain as positive as I could, no matter what.  Not to hide how I felt, but to keep me sane. 

I really thought things were bad, but the next few months proved to be quite challenging.  We will talk about them, because that’s part of the story and I am overwhelmed with the need to share.  We have some heavy stuff coming up folks, so buckle up!

We left off when my right foot had healed and I was walking down the aisle at our wedding with confidence.

The day of our wedding was incredible. I was so happy that I ignored the fact that my left foot had swollen enough that I couldn’t fit it in my wedding shoes. No big deal, we were on a beach so I went barefoot. It created 2 of the largest foot ulcers I have had to date. I was no stranger to ulcers; I now travel with a foot care kit.

When we got back from our honeymoon I went to get it checked out. I was put on portable IV for the infected ulcer in my big toe, but they still couldn’t explain the swelling. It was quite inconvenient, as not many shoes would actually fit on that foot. Many months, and many x-rays later, they found the culprit, another charcot fracture. Over the course of about 2 years I was fitted for hard casts, walking casts, air casts and other various uncomfortable footwear. We had finally decided on an air cast and a scooter. I was non-weight bearing for 6 months, riding in style with the knee scooter (scoot-scoot if you will).

As I watched the shape of my foot change I began to wonder if I’d get to keep it at the end of all this. Scoot scoot became a dreaded name in my house, and still is to this day. It was easier than the crutches for the most part, unless there were rocks, hills, cracked pavement, stairs, hills…. you get the point.

It was a real pain in the ass to not be able to walk. I was lucky that we had only 3 stairs to get into our house at the time, and I had a lot of help from my kids, my husband, a close friend and my family. I was lucky to have help with my laundry, getting to and from appointments and cleaning the house. I mean, what kind of best friend drives 45 minutes to hang out on my couch and do a mountain of laundry? I felt guilty for not being able to do it myself, but also grateful for a closet full of gain scented clothes. I had to learn to accept help.

After my foot had stopped fracturing and moving, we had to make a decision about what to do with it. It had left a bone that pushed down on the bottom of my foot, basically creating a permanent ulcer. My orthopedic surgeon gave me 3 options: leave it and wait and see, a minor surgery to shave off the pesky bone, or a complete foot reconstruction. Seems like a no brainer, right? But option 3 came with a high risk of infection which would potentially result in an amputation. So I chose the middle option; shave the bone and hope for the best.

The surgery was quick and I was able to go home the same day. I was non-weight bearing again – this time for 2 months. I wasn’t really thrilled with the result as I still have a giant bump on the bottom of my foot, and my foot is still misshapen, but I can walk on it and I’ve found a few pairs of normal looking shoes I can wear.

At this point it seemed to be one thing after another. I wanted to end this chapter of my life and move on to happier and healthier pages. My body had other ideas, and it came to be in the same doctors office I had sat in so many times before.

“Kari, your kidney function seems to be rapidly declining. I think we should send you for some extra blood work, and a kidney biopsy. I’m going to refer you to the chronic kidney disease clinic.” My heart sank.

This was the big one.