DYING BUT NOT QUITE DEAD, LIVING BUT NOT QUITE ALIVE

Hello, everyone! Let me start off by saying that this is NOT my first time attempting to start a Blog in order to help me cope with my medical condition(s), I just never gotten around to actually going through with making one. So, I would like to thank you all for having the patience with me and sticking around to read about my struggles with Chronic Kidney Disease and every new hurdle I have to overcome throughout the process.

I want to start off by giving some background information into how my journey with Chronic Kidney Disease started and progressed. Back in high school, everything seemed fine, regular doctor checkups and the standard bloodwork didn't show any signs that there was really anything wrong with me health-wise. I was a pretty active child and didn't need to take any medication for any sort of health conditions, although I was a little overweight. My doctor urged me to lose weight, especially since my BMI (Body Mass Index) indicated that I was severely obese; I was 4'7 and 210lbs and the age of 16 years old. It was in my last two years of high school that I was diagnosed with Type 2 Diabetes and was put on medication with instructions on how to monitor my blood sugar levels. My parents encouraged me to eat healthier and become a little more active in the exercise department. Exercising didn't bother me because I had tons of energy that needed an outlet, and the only thing us kids did at the time was play outside anyway. Especially since we had a trampoline to play on all day long. Since this Diabetes diagnosis, I thought that everything would be under control because I was taking the necessary steps in life in order to live healthier. Unfortunately, my life took an unexpected downward plummet faster than anyone could expect.

I graduated high school in 2013 and everything seemed to be going fine. I was even told that my Diabetes was a misdiagnosis, which still makes me scratch my head in confusion to this day. Abruptly, in 2014, I started getting sick all of the time. I would get headaches that would last for days, if not weeks. I noticed that my feet would swell up quite a lot. My skin, which was already sensitive and acne-ridden, became drier than the dessert and I was constantly itchy. My primary care doctor started to become concerned with how fast my Blood Pressure skyrocketed. I was put on medication to treat my elevated BP, which became difficult to control due to how high it was, 300+/250+. I was referred to specialists, who would put me on more medication, explained that my case was too complicated for them, and send me to the hospital where I could be monitored. Each specialist was determined to get my BP under control because their main concern was how young I was, and they worried that I might either suffer a stroke or heart attack. Thankfully, I never had either, considering that my BP was consistently mid-high 300s over 200s; even though I was taking 6 BP medications.

Having my blood pressure consistently this elevated came with some terrible health effects. I was constantly sick to my stomach. Being constantly nauseous along with the pounding. blinding headaches was a horrible way to live, but my family was my support system and grounding rock. By mid 2014, my parents were taking me to the hospital at least twice a month because I would have moments of puking non-stop for hours. Unfortunately, I am not a silent puker either. When I get sick to my stomach, it is very loud. So, hearing me gift a garbage bag with everything my stomach had to offer for more than an hour was understandably upsetting to them; especially since I couldn't stop heaving until the nurses knocked me out with pain meds after being admitted. Hospitals became like a second home for me, which wasn't fun in the least. The one good thing that came out of all of my hospital stays was a real diagnosis into why my health was deteriorating so quickly. CKD.

One of my last hospital visits in 2014 ended with a new diagnosis. My constant high BP was causing my kidneys to fail, which ultimately became the tributing factor to all of my other health problems. Sadly, when my new Nephrologist: a specialist in Kidney Care, finally caught onto my failing kidneys, he said that they caught it too late, and I was already at Stage 4 End Stage Renal Failure. At this point, there was nothing they could do for me until my kidneys completely shut down so that I could be put on Dialysis. So, even with the answers and a proper diagnosis, my life would be a continuous revolving door of hospital stays and declining health. That is, until the day my world felt like it was ending.

Right before the 2014 Thanksgiving Holiday season, my dad started feeling like he couldn't breathe, and we had to call an ambulance to take him to the hospital; even as he stubbornly refused the whole time. He was diagnosed with MPE: Malignant Pleural Effusion. His lungs were constantly filling up with fluid and he had to have a drainage tube place between his ribs to drain the fluid. At first, we believed that this was the only issue he had and that it could be solved easily. Sadly, we also got the diagnosis that he was at the end stage of Non-Squamous Small Cell Lung Cancer. These two health issues caused my dad to fall very ill quickly. Unfortunately, there was nothing the doctors could do. To make matters worse, I had gotten sick for the millionth time and was admitted to the same hospital as my dad, but I was allowed to visit his pod despite being on different floors. Seeing him deteriorate made my growing health concerns feel tiny in comparison. I already knew Dialysis was where I was headed, I was worried about my dad's fate. A week after I was discharged, my dad made the decision to use Palliative Care; which one of my older sisters helped organize. I know it sounds like we put the cart before the horse when I say that, but all of the dad's doctors told us that there was just nothing we could do to improve my dad's health. The fluid in his lungs was severely minimalizing any chance for the option of Chemotherapy, and since his health deteriorated so fast, Chemotherapy would have only prolonged his suffering. Palliative Care was my dad's decision; he stated that he wanted to pass away in the comfort of his own home and not surrounded by strangers in a cold hospital room. So, we respected his wishes.

The next week flew by in a haze. Our living room was set up with a bed and my dad's pain medications were readily available for him. Since a few of my sisters were nurses, they took time off work to help care for dad. It was tough and heartbreaking to see such a strong rock of human being in so much pain and there was nothing we could really do about it. All we could do was hold his hand, talk to him, try to make him more comfortable. His pain meds made him less lucid than normal, which was understandable, but it was still a shock to see. It hurts my heart now to even remember. My dad stayed with us long enough to celebrate Christmas and New Years. He held on as long as he could. The first sign my dad gave that led us to believe things were ending was the fact that on January 2, 2015, my dad was completely lucid for the first time since coming home. Even though we finally got him to eat something and moved from the bed to his favorite recliner, he stated that he felt that his time with us was ending. Now, we are not very religious or superstitious or anything of the sort, but my dad spent so much of the last week and a half not eating, barely sleeping, and on so much pain medication that we decided that this day of lucidity was our last time with him. We all headed his words, calling everyone, and I do mean EVERYONE! All of my sisters, cousins, nieces, uncles, dad's friends, etc. Thankfully, they all arrived that same day, even the ones that live in different states. Dad told us about his time being up so early in the morning that my sisters immediately called the family to get them here ASAP. Our house was PACKED with people by late afternoon.

Sadly, by nightfall, I was feeling under the weather. I ignored it because I attributed it to the knowledge that my dad was going to leave us, and soon if what he said was true. We knew he was dying, but I guess it just didn't truly hit me what that actually meant, especially when dad said this, he was completely lucid, and we even got him to eat a little and get out of the Palliative Care bed into his recliner. We thought that this may be a sign of his health getting a little better, as naive as that sounds. We even called his Palliative Care nurse to tell her what he said, and she said that it is hard to determine when a person will pass away, even with the words coming from his own mouth. All of us still desperately held on to that hope of more time with him, even as we called the family together. As the day progressed and more people came, the house was starting to feel a little heavy. I was feeling upset to my stomach and was soon in the downstairs bathroom, hunched over the toilet and puking for what felt like hours. Eventually, one of my sisters told me that dad could hear me throwing up and was getting worried, so one of my nieces offered to drive me to the hospital.

I don't remember much about my admittance, but it was the same old song and dance routine, exactly like all of my previous hospital stays. Puke for hours, get to the ER or hospital, wait for admittance and a room, get my IV put in, receive some medication, and eventually pass out due to the combination of pain meds and stress. When I woke up, the first thing that I heard was sobbing, so I looked to my left and saw my niece clutching her mother, both of them were crying loudly. Then, I noticed my mom and a nurse walk up to me on the right side of my bed. The nurse was holding a syringe in one hand, which didn't make any sense to me at the time. My mom then proceeds to tell me that my dad passed away. I was so shocked, I didn't know how to comprehend her words. Weirdly, my nose started to bleed and then I knew nothing more. Turns out, mom told the nurse that I may need a sedative, which I was given. It only gave me a little reprieve from the horror that awaited me when I woke up again. Turns out, not only did my dad pass away on January 3, 2015, my kidneys finally completely failed the same day.

While preparations for my dad's funeral were being arranged, I was healing up from getting a Peritoneal Catheter placed in my abdomen, getting everything ready to start Dialysis. The day of my dad's funeral was the day after my discharge. I'll never forget it, but it still hurts to remember it. His memory still lives on in all of his family and friends though. We talk about him all of the time, reminiscing on all the funny memories and ridiculous moments. I believe I could have died that day as well, if I didn't get to the hospital in time, but since I did end up going, dialysis keeps me alive. I am dying but not quite dead, while my dad lives on in us even though he is not quite alive.