DOWN, BUT NOT OUT

Hello, everyone! I have some bad news and some hopeful news to share with you all. So, in the middle of last year, 2024, I had started the process of getting on the Kidney Transplant List. My case was denied due to concerns of blood clots forming and killing the healthy Kidney that would have been transplanted. Cleveland Clinic surgeons denied my case, but University Hospital is going to think over my referral and give me a second opinion. Fingers Crossed. I know what you all are thinking. "Why did you wait so long in trying to get a Kidney Transplant"??!! Well, the long and the short of it is that 1) I did go through the process and was successful in getting put on the list back in 2016 and 2) I had way too much going on in my life at the time, so keeping on top of everything was difficult. When I first got my case accepted and was put on the Kidney Transplant List, I did everything that I was supposed to do, and the coordinator let me know that the only thing that they required of me was to check in with them as frequently as possible. I was super excited because the process to even be CONSIDERED for transplant surgery is extensive. I did all the blood work, finished the laundry list of checkups that the Kidney Transplant team of doctors wanted the results of, such as CT scans with and without contrast dye, to examine in order to determine if I was healthy enough for surgery. Thankfully, everything came back normal. Once the Kidney Transplant team reviewed my case and okayed it, I was told to just stay in touch and check in frequently. I did just that, only to be told a few months later that I was taken off of the Kidney Transplant list due to non-communication. This completely bummed me out, but I was too exhausted at the time to contest anything.

My exhaustion was due to multiple contributing factors impacting my mental and emotional health. I was still reeling from my dad's passing, trying to finish my Freshman year at Kent State University, and was trying to deal with learning the steps of taking charge of my Peritoneal Dialysis treatments. The nurse that was teaching me how to do my treatments at home was kind of uptight and, dare I say, kind of rude. Since I am not one who thrives in drama or talks back to people, I tried to ignore her attitude, even though she was extremely short on patience and understanding. Some people may be qualified on paper, but in face-to-face interactions, they are lacking. Anyway, I learned how to do the treatments at home, which became easier with every day that passed. Sadly, with Peritoneal Dialysis, there are a few major downsides, in my personal opinion. 1) There are a lot of boxes to store for a one-month supply of treatments, plus emergency supply for "just in case" situations. 2) The administering of the Dialysis treatment itself was tasking. Getting up at four in the morning, heating up the bag of Dialysis solution with a heating pad, noting my temperature and blood pressure on the check-up sheet, hooking up the bag of solution on the IV pole, cleaning the end of my Peritoneal tube site connector with an alcohol pad, hooking said site up to the drainage bag (the empty bag that is used to collect excess fluid gains), and then filling myself up with the treatment solution, cleaning up and recapping my Peritoneal Dialysis site. Not only did I have to note my weight, temp, and BP; I also had to note if the drained fluid from the previous treatment had anything wrong with it just in case of infection. Having to do this process three times a day, figure in how many days is in a month, that's a LOT of supplies.

My third grievance with my Dialysis treatments was having to be consistent. Peritoneal Dialysis treatments have to be consistent; same time, three to five times a day (whichever you are directed by your Nephrologist), like clockwork. Knowing that, it kind of limited my social life. I had to be home by a certain time to get set up and situated. As much as I would like to harp about this issue, there was a glorious solution presented to me. Nighttime treatments. There is a Peritoneal Dialysis treatment machine that runs all night while you sleep, leaving you free all day to do whatever you want; go wherever you want while not having to worry about rushing back home. The only downside to both of these Dialysis treatment options is lugging the supplies around during travel/vacations. Having no choice, especially if I wanted to travel for vacations; I made it work. Until once again, my smooth sailing started hitting rougher waters.

Even though I do not remember the day that my Peritoneal catheter started to fail. I just remember having gotten sick rather quickly and ended up in the hospital (Greetings again, my second home!). As it turned out, my catheter got infected somehow, I don't even know how, but it was no longer a viable option for treatment anymore. So, they put a Hemodialysis catheter in my chest and scheduled me to get a Fistula put in. Hemodialysis cleans toxins out of the patients' blood, taking off excessive fluid gains, and, in my personal opinion, is a lot better experience that Peritoneal. At the Dialysis Clinic, I have a full staff there to monitor me in case something wrong happened or I needed help. Having professionals there helps me gain knowledge in order to understand my situation better. Having certified techs and nurses right there gave me a huge network for moral support. My clinic's techs and nurses are invested in the patients' well-being and makes sure that we are all on top of our health and living situations. I feel comfortable enough to ask questions, vent, share my life stories, and bond with them in a way that feels natural and genuine. Unfortunately, even a thriving and supporting environment has its hurdles.

When I first started Hemodialysis, my body found it difficult to adjust, I was getting sick almost every treatment. Eventually, this issue resolved itself and I was able to tolerate the treatment session without feeling terrible. The next issue came with how dry my skin became. I started my Hemodialysis treatment time for 3 hours and 30 minutes, which meant that it felt like a lifetime of torture just sitting in a chair, hooked up to a machine, and constantly scratching. Thankfully, Benadryl is readily available if you ask the nurse. At least, at my clinic. There have been some Dialysis Clinics that either don't carry Benadryl or only give it to patients with a doctor's note saying they need it due to having an allergic reaction to the treatment or Dialysis needles. After I settled into my new routine of going to my Hemodialysis treatments every Monday, Wednesday, and Friday, I scheduled my college courses and social calendar for the weekends, Tuesdays, or Thursdays. Eventually, my Fistula matured, and the clinic techs were able to use that site and remove the catheter. This was a positive step forward because the catheter site gives patients a higher risk of infection, so the staff urges patients to get a Fistula site as fast as possible. But, with my luck, what goes up must come down.

My Fistula worked beautifully for a little while, but then I started having problems with it. I needed a few Fistulagrams done and they had to balloon my site, opening it up more to help the blood flow. A few stents were placed and this trend continued on until the site itself became permanently unusable. The Fistula was in the upper portion of my inner right arm. It's still there, even though there is no longer a thrill (a sign that the Fistula's blood flow is strong, steady, and able to be used). Since the Fistula was inaccessible, I had to have a chest catheter placed back in while a surgeon figured out where my next site would be placed. Unfortunately, all of my previous hospital stays led to my veins being overused due to IVs and extensive bloodwork. I didn't know that was even possible, but the fact became my reality. The surgeons decided to see if my legs would be better options than my arms for a Fistula placement. After carefully examing my veins by way of ultrasounds, my surgeon determined that my legs were viable options for a Dialysis site. She quickly informed me that I could have a Graft placed instead of a Fistula. A Fistula (connecting an artery and a vein) versus a Graft (joining the artery and vein with the help of a soft tube) are virtually the same. So, a Graft was placed in my left thigh and even though I wasn't excited about the procedure, there was no other choice.

After having my Graft placed, I had to let it heal/mature in order to become usable. My fear of needles was what made me try Peritoneal Dialysis first, because with Hemodialysis, the patient is stuck with two needles (venous and arterial), so I just had to learn to get used to being stuck three times a week. My life motto should be: "Adjust and adapt". Just like with every other hurdle that came my way throughout this journey of Chronic Kidney Disease, I jumped as high as I could and overcame it. My Graft worked well for years, and I believed that this was going to be the last issue I was every going to have until I could start the Kidney Transplant List option again. I put a hold on trying to get back on the Kidney Transplant List until I graduated Kent State, which was still a few years away. I was adjusting well to Hemodialysis, keeping my fluid gains steady, eating better, sleeping better, getting through my classes slowly but surely, and trying to be there for friends and family the way they were, and still are, for me. But, once again, hurdles keep popping up, making my progress stumble to a halt. This time, however, the experience permanently gave me some serious PTSD.

During October 2023, I went to one of older sister's house in a different state for the whole month. I RSVP'd for GRL Book Signing event that was being hosted the week of Halloween and had my nephew come up to Ohio and drive me back to Virginia in exchange for me paying to fill up his car with gas and buy any snacks along the way. As you can guess, the same old song and dance happened. At first, things were good, almost too good. My home clinic set up my Dialysis treatments at a local Dialysis Clinic ten minutes away from my sister's house and the schedule worked great around all of the activities the book signing event hosted. Then (cue the dramatic music: dun, dun, DUN!), I started to notice that my Dialysis site looked irritated and felt sensitive. Looking back on the memory, I should have taken pictures to document my situation, but at the time, I thought I was overreacting and didn't want to make nothing into something. Hindsight is 20/20. I asked my sister if she thought my site looked weird, and she said it looked very irritated. She gave me Neosporin, band aids, and medical cloth/tape to keep it covered. A few days later, I called my home Dialysis clinic's nurse to see what I should do, and she suggested that if there was any seepage, I should have a sample collected with a swab before the beginning of my next treatment day to determine infection. The clinic I was having my treatments at in Virginia brushed off my concerns and straight up ignored my worry. I don't like to make waves, so I just let the issue go, believing that I was stressing for no reason. Not wanting to be "that girl", I let it go. BIG MISTAKE!!!

When my vacation was over, I once again brought my concerns up to my nurse at my Ohio clinic. Thankfully, she took me seriously, but what we didn't know was that it was too little too late. My Graft was not clotting fast enough after holding my sites for 45 minutes after every treatment and kept breaking open often. It's okay for sites to break open every once in a while; the patient would just need to hold it for another 5 to 10 minutes. When sites break open, blood does come out fast, but not so fast as to have to freak out over it, it's easily stopped. This type of situation isn't too stressful. However, when my site started breaking open, not only on Dialysis days but NON-Dialysis days as well, each incident became scarier than the last. These incidents got to the point of fear for my family and me. We had to call EMS several times because my site would break open and bleed so heavily, I was afraid of dying due to severe blood loss.

My fear made it hard to sleep, believing that if my site broke open while I was sleeping, I wouldn't know something was wrong in time to stop the bleeding. Since I live alone, the possibility of my site breaking open while I'm deep in sleep is scary because no one would know until they did a wellness check, far too late. Another fear that emerged was taking showers. I was taking a shower and just as I went to put shampoo in my hair, I felt the water become oddly warner by my feet. When I looked down, there was nothing but blood. I freaked out, jumped out of the shower, grabbed toilet paper to stop the bleeding, called 911 and cried to the dispatcher that I couldn't get my Dialysis site to stop bleeding. I was afraid to die and the bleeding wasn't stopping; I felt helpless. As I think on this memory now, I cannot help but become embarrassed. I had to waddle my apartment door (still holding toilet paper on my site) to unlock it and waddle back to the bathroom because I didn't want to bleed all over the carpet and the bathroom floor is tile. This was practical because tile would make for easier cleanup. To make the incident even more embarrassing, the attractive paramedics that came to assist me had to walk into my blood-stained bathroom with me hunched over like a gremlin, trying to use thin as hell toilet paper on a site that wouldn't stop bleeding. There was blood EVERYWHERE!!! And, since I was naked drenched in blood and shampoo, they probably thought I was off my damn rocker! One of them helped to get the bleeding under control by getting gauze and applying pressure while the other paramedic grabbed me another towel from my closet and tried to help me get rid of the blood from my leg and hands.

Once the bleeding stopped, they asked what I wanted to do and I said, "I want go to the ER". I was NOT taking any chances. But the trip was futile. By the time we got to the ER, my site had stopped bleeding and the doctor overseeing my case told me that there was nothing that needed to be done. I was discharged a few minutes later and called one of sisters to come pick me up to drop me back off at my apartments. She was LIVID, hating that I was discharged without anyone taking this incident as seriously as we are. I told the doctor everything, about my suspicions of infection, but he said that there was no sign of infection, so they didn't feel the need to keep me. Once my sister and I got to my apartment, she helped me clean up my bathroom. Blood was in the tub, on the floor, in the sink, on the door, freaking EVERYWHERE!!! She asked me if I wanted to stay at mom's apartment for the night. I wanted to say "yes", but I declined. I didn't want to burden them any more than I already had. Let's just say, I didn't sleep that night. The next incident, thankfully, happened at my mom's apartment, so at least I wasn't alone.

My mom lives about 15 minutes away from me, and lives on one side of the duplex while my sister (the one who drove me home from the ER) lives on the other side of the duplex. I was sitting in bed, playing on my laptop, when I decided to get a snack. When I stood up, it felt like water running down my left leg, so I knew my site broke open again. I rush to the bathroom, yank my pants down, grabbed toilet paper, and screamed at mom for help. She's a little on the older side, so it took her a second to hear my screaming, but once she saw what happened, she speed-walked as fast as possible (at 77 years old) to my sister's side of the duplex for help. My sister ran over, grabbed a washcloth and applied pressure. She got the bleeding to stop, but we went to the ER again, just in case. Instead of just sending me home, the doctor ended up stitching me site closed and then discharging me. My sister questioned it, but once again, I didn't want to make waves, thanked the doctor, and we left. This was around Thanksgiving. After this incident, my site broke open twice more, and ER trips only amounted to more stitches. I went to see a Vascular surgeon and they didn't see anything wrong with my site, so sent me home. Then, IT happened...

It was a week before Christmas, and I was writing Christmas cards. I get special stationery and pens, use wax seal stamps and personalized mailing stamps. I was stationed on my bed, blasting music on my laptop with stationery, pens, wax and seals completely surrounding me, in my own little world. My mom knocks on my door to inquire how I am doing because I have been "holed up in here for hours". I excitedly show her my progress and she asked to use my lighter (I don't smoke but I keep one to light the wick to melt the wax for the letter sealing). She wanted to light some incense around the house. I must have dropped the lighter, so I bent over the side of my bed to retrieve it and felt a POP. In 2 seconds, the whole leg of my pants was red and wet. I freaked out! I shoved my letters, envelopes, and wax sealing kit to the floor in a panicked rush, jumped up, yanked my pants down and screamed. Blood GUSHED EVERYWHERE!! If I thought the bathroom incidents were nightmare inducing, they were nothing compared to this one. Once again, mom ran to get my sister, who freaked out worse than me while trying to apply pressure with a washcloth. NOTHING was working. My sister's boyfriend called 911 and once they rushed into the house, they didn't waste any time trying to apply pressure. The paramedics started becoming frantic because I lost so much blood and felt woozy. I was sitting at the bottom edge of my bed and had to lay down or I would have fallen forward to the ground. Eventually, the paramedics applied a torniquet and let me tell you, it hurt like a MOFO!! There was so much blood, they were freaking out, even as they placed me on the gurney and rushed me out of the house, they were worried. And if the paramedics are worried, it's a bad sign. The last thing I heard before we cleared to doorway to the front yard was my sister SOBBING.

This hospital stay, while just as short as the previous ones, became more informative. The doctor that oversaw my case understood the severity of my site breaking open multiple times. It didn't help that my sight was even secured shut with the help of stitches but still bled so severely. The doctor discharged me with orders to see a Vascular surgeon. I had to go the next day anyway because the torniquet the paramedics applied caused my Graft to stop working altogether, which is a huge NO-NO. When I saw a Vascular surgeon the next day, he got my site to work again, but he said it looked infected, so he wanted me to go to the ER again. I ended up having my sister drive me to the ER, where they FINALLY kept me and admitted me.

Losing as much blood as I did in such a short period of time meant that that I had to have three blood transfusions. The doctor also scheduled surgery in order to remove my infected Graft and put a new Graft in my right thigh instead (since they couldn't find any viable veins to use in my left arm). So, I spent Christmas in the Hospital on heavy-duty antibiotics, pain medicine, and IV transfusions. Both my legs were swollen and in such painful states and my chest ached horribly with each breath I took. I had a Dialysis catheter in my chest again, like 30 stitches in my left thigh where the infected Graft was removed (as well as gauze for packing the wound), and severe swelling in my right thigh from having another Graft placed. Let's just say, recovery was long and painful, but I got through it with my huge support system. My sister and I still talk about the INCIDENT with fear and dread. I constantly have nightmares where I bleed to death and there is nothing I can do. I take showers with so much caution. I fear of even sitting down sometimes, just the thought of my site breaking open makes me anxious. And, I'm not an anxious person. I have MAJOR PTSD from it, I have changed my whole life habits due to this fear. I felt so HELPLESS and there was NOTHING I could do to stop the bleeding. My sister was so afraid of me bleeding out, she has almost the same feeling of helplessness. She tried so hard to stop the bleeding, but since nothing was working, she was terrified that I was going to die. It was SCARY.

I have had several near-death experiences, and even though I am not afraid of the thought of dying, I am TERRIFIED of how I'll die. If my last moments here on Earth would have been that INCIDENT, I would have died scared for not only myself, but my family's helplessness and grief at being subjected to such a traumatic experience. But, just like every other hurdle my Chronic Kidney Disease threw my way, I got knocked down, but I'm not out yet.