Then and Now- a comprehensive review and update lol
I’ve given a few updates here and mostly there so here is a comprehensive one.
When I first started my blog, I had just gotten kicked out of nursing school. I was starting my final year of college. I was not allowed into the school because I could not get the chicken pox shot, because I was on immunosuppressants. It did not matter that there were previous students who had the same issue, they were allowed in. I was not. I was in stage 4 kidney disease and basically walking around in shock all the time. I was so insanely sick. I was tired all the time. I still got up at 6am to go to my nursing classes. i wore ted hose everywhere. Students even used me as a model for learning how to put them on. When I was kicked out, it felt like everything I loved was taken away from me and I truly did not care if I lived or died. I stopped believing in God. I had neither my health nor the life path which I loved. I gave up. I did not care about anything. This was September 2011. I was 21.
I could hardly breath when I walked because my hemoglobin was a 6. I also had severe metabolic acidosis, which definitely make me sicker than the anemia. I had to take baking soda pills all day long. My doctors took me off of immunosuppressants. So I could have been in nursing school anyway. I spent all day sleeping. I would wake up around 12:45 with enough time to grab lunch from the cafeteria. I would eat for about 45 minutes because I was never hungry. I was trying to eat. My stomach was so distended. I probably had about 20 pounds of fluid in me in. I would go back to sleep around 2. Wake up at 6:30. Get dinner at the cafeteria. Eat slowly. Put makeup while lying down because any sitting or standing was counted against me because of the edema. I needed to save sitting and walking when I actually needed it.
In December 2011, I went to my doctor. I just had transferred to an adult nephrologist at a huge hospital. I hated this doctor. I had my first visit a few months prior. She greeted me by saying “oh, you came from childhood hospital? You’re really going to miss it. We are not so nice here.” This should have been my warning sign for a few years later. During my December visit, she randomly told me I needed a transplant, and to begin the workup for it when I visited next time. When she told me, I was in denial. I’d go into this holy shit mindset and I told 1 friend what happened and then a few seconds later I’d be like no this isn’t happening. I did not talk to anyone really. I did not tell anyone.
I’ve had kidney disease since I was 14. No one ever told me anything about what a transplant meant. I was sure it meant I would have this major surgery and die a few years later. I thought transplant was a means to add a few extra years to your life.
January 2012. I had just turned 22 about 10 days prior. I was staying in school to take an extra class over our January term. It was a snowy and cold day. I was in the middle of a test and recieved a call from my dr. I went into the hallway and she told me that I needed to go to the hospital and get evaluated for dialysis. I had nothing to say. I couldn’t believe what she was saying. I went back into my classroom and told the professor I had to leave because I was going on dialysis. He looked at my funny and was like okay...and then I left. I sat on the third floor looking out the large window and cried. I waited for my parents to pick me up.
I went to the ER and met with someone who eventually became my dialysis nephrologist. I was admitted and not yet placed on dialysis. The next day, I was given so many meds, iron, etc. Well the iron made me insanely sick and I actually can’t have that variety. I was shitting and vomiting for about an hour at the same time. It was so horrible. I had a friend come, who eventually became my boyfriend. It was decided that I needed a line placed for dialysis. I was paralyzed with fear. I had no one to talk to. I didn’t know how to comprehend it. I waited in the bathroom and looked at myself in the mirror before they took me back to get the line placed. Probably the next day I started dialysis. I was screaming and crying. I didn’t even know what dialysis was! I thought it was going to hurt. the machine is huge and scary to anyone, especially if you have no idea what the hell it even does.
I eventually returned to school and lost my edema which was the only good thing about dialysis. My mom’s friend, who is my age, decided to get worked up to donate to me. I graduated on time with a degree I did not want. I went to dialysis on graduation day. The summer went okay. I was sick and on dialysis 3 times a week. I had become serious with a guy and we started to date exclusively. In January 2013, I had my ureters ligated at the last second. The hospital was originally going to remove my kidneys. I wish they had. Instead, they did an experimental dangerous surgery (I did not know this at the time), where my kidneys were left in and my ureters were tied. It made me sicker than before. I almost died in February 2012 because my blood pressure was so high and I got flash pulmonary edema. I woke up on a ventilator. I do not remember much about being on the ventilator that time around. I briefly woke up from my induced coma and saw the tubes in my mouth and the ventilator, and made eye contact with the nurse as if I were saying “is this me?” And then I passed out. My bp was about 220/115 at all times and nothing fixed it. This resulted in 2 aneurysms in my brain stem that have yet to be fixed.
I got my transplant in March 2013. It failed 3 weeks later from hospital neglect. This time I really wanted to end my life. I had almost died 3 times in their care. I weighed 73 pounds. My kidney was removed because it was lacerated and I had severe abdominal bleeding where I almost died on the table. I had experienced true hell. I experienced unspeakable things that I still relive daily sometimes. I still have nightmares about it often. The hospital didn’t want to place me on a waiting list again because they believe I was unfit. So I transferred hospitals. I went on hemodialysis briefly. It made me sicker than my first round on it. Constant vomiting, migraines, and just dropping out. I had severe wash out that debilitated me for days. So I went on peritoneal dialysis. I did 12 hour cycles on my machine daily, with one to 2 manual exchanges. I was doing dialysis about 16 to 17 hours a day. But it was infinitely better then hemo. Everything was in my hands. I was in charge. I was in control. I was able to be in the comfort of my own home. I even got my masters degree while on PD.
My best friend from college decided to donate to me. Our transplant was a year later, in March 2014. The fsgs came back, but we started rituxan, which is a chemo. I also had to do plasmapheresis (my third time ever doing it). My fsgs never came back after the rituxan.
My kidney is 4 years old and I cannot believe it. I never thought my life was ever going to workout. i could never even imagine living this life. It was only a distant hope or dream for me.
I work as a senior researcher in a medical specialty. I bought a condo. I have a dog. I have a new boyfriend. I travel several times a year for work. I work with national societies and organizations for kidney disease. I even met with the Secretary not too long ago. I am constantly working to make sure no one ever has to experience what I went through. Dialysis care is shit and we need to change that. I go on vacations! I had only gone on one vacation and that was when I was 14, and I actually found out I had kidney disease during that vacation. My life is literally not the same at all. Being on dialysis could have been 100 years ago or yesterday. I can never decide which one.
But now, it is life post-transplant. And even though it’s amazing, it can be hard. The PTSD I have from my first transplant can be more than I can handle sometimes. I have severe anxiety and panic. I have seen many doctors on this. It doesn’t help that I just had one of my kidneys removed 6 weeks ago, because that experimental ligation I had FAILED. My kidney would not die, which is actually remarkable. I tell myself that every cell in my body is as resilient as my mind. The recovery from that surgery has been challenging to say the absolute least. It has triggered so much anxiety and panic in me. A lot of the people in my life were not there when I was on dialysis. They dont know sick me. They know healthy me. And sometimes that is hard too.
Well, that’s enough catch up for now. Today has been hard on my mind and I need to at least try.
