I always think of my illness story in three parts: the initial diagnosis, my second flare, and my kidney transplant. Today I want to share with you guys about the second flare of my illness. This was a big turning point in my illness, because a lot of intense changed followed. For the last 8 years after my initial diagnosis of ANCA-positive pauci-immune glomerulonephritis, I had lived a semi-normal life. At the beginning it was lots of craziness, of course, the chemo, the renal diet, the back-to-back hospitalizations, and the medicines. However, eventually things settled down. Thinking back now, I remember my biggest worry being graduating from middle school and having my doctors' clearing that I would be able to attend the graduation ceremony. So, it's even funnier now to think that 8 years later at the age of 22 about to graduate from college, I was being faced with the same situation.
While in the hospital, during that time, I couldn't help but think that this was all God's way of tying everything together full circle, so that I could see how far I had come. Life was bringing me what I needed. A wake up call. Throughout the years, I had become less restrictive with my renal diet. It became okay if I missed my prednisone every now and then. Heck! It was okay if I missed the whole pill routine in the morning! I stopped taking care of my body, and she spoke up. Oh, did she speak up. I was so caught up with school and graduation, my practicum, being hired at my practicum site that I forgot to slow down and ask myself how I was doing. I was all go, go, go with no stop in sight.
When my primary nephrologist started noting that my kidney function was decreasing and my blood results were all out of wack, I wasn't completely surprised. Upset, yes. Surprised, no. I didn't want to believe that this was happening again. That my autoimmune disease had been triggered again. By this time, my nephrologist had a different name for my illness. By this time, it was something "like Wegner's." I'm serious. She always described it as "like Wegner's." So, it's not Wegner's? But you don't know what it is. You're just going to call it "like Wegner's." Okay, great. Definitely another story for another day, because how the heck is it 8 years later and now my disease is being labeled something else and you're not even sure? Like I said, rant, I mean story for another day. On to what I was talking about. . . my blood work was troubled. Poor troubled blood it was. To be honest, I think I was aware of this even before my nephrologist started bringing it up every time I saw her. That entire semester I felt like crap. Crappity crap crap. You really don't realize how bad you feel until you start feeling better. And then you look back and you're all like, "Oh, yea, my body DID feel like it was crumbling." Climbing up the hills on campus was the saddest realization that something wasn't right. Every step I took up this particular hill felt like I was dragging around a ball chain on both legs. The oxygen didn't reach my lungs and I was constantly gasping for air. It felt like the people around me could see me dying. Only one time of the many times I climbed that hill did my body force myself to stop midpoint and try to breathe. Mess I was. I felt so embarrassed. I looked around to see if anyone had caught eye of my shaky, sweaty self. Nope. Only a couple people seemed to notice. I pretended to have stopped to check something on my phone. Not 10 seconds had passed before I willed my body to "stop being dramatic" and keep going. I wish I could go back in time to hug myself. <3 I'm sorry Past Maria. I was really mean and not a good listener. Forgive me. I forgive you.
For the longest time, I thought that these symptoms were all in my head. You're not really tired. You're not really out of breath. You're just out of shape. Get over it . Keep going. Your legs aren't really swollen. Your blood pressure isn't that high. Your joints don't actually hurt. Your nose doesn't have four random nose bleeds per week. That's how ridiculous I sound to myself now. Well, eventually, I was admitted to the hospital shortly after my graduation. I had gone a little over 2 months living through a body that was shutting down. After a lot of insurance struggles, which was one of the reasons that was holding me back from being treated, I was scheduled for a perma-cath insertion. Looks like this:
When my primary nephrologist started noting that my kidney function was decreasing and my blood results were all out of wack, I wasn't completely surprised. Upset, yes. Surprised, no. I didn't want to believe that this was happening again. That my autoimmune disease had been triggered again. By this time, my nephrologist had a different name for my illness. By this time, it was something "like Wegner's." I'm serious. She always described it as "like Wegner's." So, it's not Wegner's? But you don't know what it is. You're just going to call it "like Wegner's." Okay, great. Definitely another story for another day, because how the heck is it 8 years later and now my disease is being labeled something else and you're not even sure? Like I said, rant, I mean story for another day. On to what I was talking about. . . my blood work was troubled. Poor troubled blood it was. To be honest, I think I was aware of this even before my nephrologist started bringing it up every time I saw her. That entire semester I felt like crap. Crappity crap crap. You really don't realize how bad you feel until you start feeling better. And then you look back and you're all like, "Oh, yea, my body DID feel like it was crumbling." Climbing up the hills on campus was the saddest realization that something wasn't right. Every step I took up this particular hill felt like I was dragging around a ball chain on both legs. The oxygen didn't reach my lungs and I was constantly gasping for air. It felt like the people around me could see me dying. Only one time of the many times I climbed that hill did my body force myself to stop midpoint and try to breathe. Mess I was. I felt so embarrassed. I looked around to see if anyone had caught eye of my shaky, sweaty self. Nope. Only a couple people seemed to notice. I pretended to have stopped to check something on my phone. Not 10 seconds had passed before I willed my body to "stop being dramatic" and keep going. I wish I could go back in time to hug myself. <3 I'm sorry Past Maria. I was really mean and not a good listener. Forgive me. I forgive you.
For the longest time, I thought that these symptoms were all in my head. You're not really tired. You're not really out of breath. You're just out of shape. Get over it . Keep going. Your legs aren't really swollen. Your blood pressure isn't that high. Your joints don't actually hurt. Your nose doesn't have four random nose bleeds per week. That's how ridiculous I sound to myself now. Well, eventually, I was admitted to the hospital shortly after my graduation. I had gone a little over 2 months living through a body that was shutting down. After a lot of insurance struggles, which was one of the reasons that was holding me back from being treated, I was scheduled for a perma-cath insertion. Looks like this:
The permacath allowed for immediate dialysis and plasmapheresis. I was in the hospital for 2 weeks, which isn't as bad as spending 2 months in the hospital, lemme just say. The plasmapheresis and biotherapy medication were used to combat my "like Wegner's" disease. The hemo-dialysis and plasmapheresis were really difficult for me. Having these tubes hanging from my chest made me feel anxious. I highly dislike doctors or surgeries near my neck, so it was a big discomfort.
Every other day, for the two weeks I was hospitalized, I would get wheeled in on my bed to this little dialysis room where other patients could get their dialysis too. My blood would get cleaned for a little over 3 hours. I tried to sleep through most of it. During my stay, the plasmapheresis was done in my room by this humongous machine. Basically, plasmapheresis is supposed to replace bad plasma that contains the confused antibodies with good, healthy, non-confused plasma. That was also kind of horrible, because it attached to the same permacath tubes and made me feel really cold and numb all over. (Not super bad side effects). The nurse administering tried to counteract the side effects with calcium, but I eventually started saying the numbness had gone because the injections weren't doing anything.
After the two weeks were up I was allowed to go home and start my job as a child life assistant at my practicum site. The same way it had happened 8 years before. How cool is that? Two totally different stages in my life and the same excited , fulfilled feeling came over me like, "Hell, yea! I'm here! I'm alive!!." I continued on to in-center hemodialysis for two months while I trained for my peritoneal dialysis. My hemodialysis was a great experience for the most part. I met some really amazing and funny people there. An older man who sat next to me always made friendly talk and always had a smile on his face.
In October of 2013, I moved on over to peritoneal dialysis and that was a whole other adventure. The surgery of adding a tube to my stomach, which let me tell you something, definitely gives a hit to the self-esteem of a 20-somethin' who has struggled with body image issues. With the help of many friends, I have found an appreciation for my body and all it does to keep me healthy. Later that year, my nephrologist began planning for my kidney transplant and I started attending orientations, appointments, and exams. But that's part of a story for another day. (I really need to keep a list of the stories I need to remember to tell you.) ;)
This whole journey has been so needed and welcomed, because I love my life so much because of it. . . and I really like the person I am. Thank you for listening. Remember, it's good to slow down. It's good to take a step back and enjoy life (yes, even the tough stuff). Love that same life and be kind to yourself. Be kind.
This has been Maria reporting. Over and out. <3