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Author Topic: Not New to dialysis but new here  (Read 2717 times)
pylesch
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« on: November 26, 2014, 12:04:07 AM »

Hi everybody!
I'm Cassie and I'm 22 from Ohio and I've been reading posts and getting my questions answered on this website since I started dialysis a year ago but I just never realized I could join so now I'm here! I'm very thankful to all who post here because navigating the problems of kidney failure and dialysis is difficult and you have all helped me every step of the way.
So here's my story.
My father was diagnosed with kidney failure at about 21 years old with no known cause. Due to his high tolerance for pain he waited way too long and his kidneys were the size of raisins, therefore no longer viable for biopsy. So at 21 he was put on hemodialysis in order to give the doctors enough time to place a pd catheter. After he had his catheter placed he did manual and then cycler pd and got on the transplant list at Ohio State. Fast forward three years and he got his first transplant (a cadaver) at 24. He and my mother went through many different tests in order to decide whether his medical conditions were genetic (he also had muscular dystrophy along with all his renal issues). The doctors still had no for sure cause for his kidney failure but they ruled it as not genetic due to no previous kidney problems in the family. Through two transplants and three different periods on dialysis our family was used to the hospital we were used to hard times and always knew in the back of our heads that someday we would lose him. In May 2012 my father died due to peritonitis that turned septic (again due to the high pain tolerance and his desire not to burden anyone by having to go to the hospital). We had a really difficult few months and in November 2012 just when things started to get better with our family I started to get sick all the time. Sickness after sickness it kept getting worse. A cold, the flu, pneumonia, and finally mono. I was out of college for over half the semester with professors calling me a faker because I was sick for so long. When I finally went into the emergency room for excruciating back pain I was told that I was in acute renal failure. Imagine the shock on my poor mothers face when she was told that life was going right back to where we were before. Everyone who is dialysis or has a family member on it knows that feeling. Its the sad betraying feeling that when someone passes away at least they are out of pain and everyone left behind can finally find a little balance in life. No more hospitals, no more sickness, finally a little bit of normality. In the midst of a storm the normality that you will have is a little comfort. But here we were in that emergency room with our little bit of normality ripped away. I was absolutely devastated. I knew exactly what my life would be like I saw it, I lived it before. I wasn't ready (no one ever is) and without my best friend to navigate my sickness with I was crushed. He was my rock and my best friend. He was everything a dad should be and more but with way less time than he deserved (he died at 50). Thankfully our family had experience so I wasn't blindsided by everything I was hearing and I had more time to process my news instead of just being overwhelmed by doctors. I had to have a kidney biopsy and I was in the hospital for a week. A little later we learned that the culprit was IgA Nephropathy which is an autoimmune disorder in the Glomerulonephritis family. For my whole life my kidneys were slowly being filled with IgA protein which eventually clogged the filters and caused scarring then failure. The worst part was when they told me it could have been prevented had my doctors not ignored the protein in my urine which had been showing for four years. Even though my dad was their patient they either chose to ignore the protein or just didn't use common sense and put 2 and 2 together. We were never told about the protein and apparently they just assumed it was because every time I came in I was sick which can cause a little bit of protein. Along with this devastating news I was told that there was some hope because people with this disease can sometimes be treated with Cytoxan, which is a type of IV chemotherapy. I was to start chemo in hopes of reversing damage and maybe having it as a permanent treatment. Although the doctor told us the chance was slim for results and the chance was high for sterility and other awful side effects I made the decision to start the treatment. Thankfully it was started slow in the anticipation that it may not work. I was given two treatments of Cytoxan through IV once a month for two months. With no positive results and a GFR that was still falling it was decided that we would maintain the little function I had left (about 20%) and we would prepare for dialysis early rather than the emergency beginning of dialysis that most people experience. For quite a while the medications and lifestyle changes were working and maintaining the function. I am happy to say that because of my amazing doctor I was able to study abroad in Germany for a month, which was a requirement for one of my degrees, and was something I was told by my first doctor (assigned in the hospital) that there was absolutely no chance of me going and therefore no chance of me earning my degree. I switched to my current doctor who was also my father's doctor and who I knew very well. I was bound to switch but I was trying to give the other doctor a chance. After finishing my study abroad I came back home and in a little over a month I had my dialysis catheter placed for PD. I have now been on PD for over a year, starting out on Baxter and then switching to Fresenius. I skipped manual PD in order to accommodate my school schedule and have since finished both of my undergraduate degrees and I am now working on a Masters. I am on the transplant list at Ohio State and am currently awaiting a transplant while also testing some live donors. Even though I have had a few donor denials I am still hopeful that I will find a kidney. With a live transplant I would be able to keep the kidney as long as it would serve me and when it starts to give in to the autoimmune disease (which will target the new kidney) I can be treated with chemo again to keep it from failing. So currently I live at home with my mom and my step-dad. I have a sister and and step-brother and sister. My family helps me out and supports me with their love. We are waiting for a kidney and until then I just hate dialysis. I deal with the norm of vomiting, being exhausted, having insomnia, and wishing I had back my old unscarred body. But I am still here with a positive attitude and a hope for the future. I cannot wait until the day dialysis and I can part ways and leave our relationship in the past.
That's my little story. Sorry if it was a bit lengthy.

And if you'd like to watch it news channel 5 just did a story on me due to my boyfriend posting on the internet looking to help me find a kidney. (He's the best!)
Here's the link:
http://www.newsnet5.com/the-now/northeast-ohio-woman-needs-kidney-fighting-same-disease-that-killed-her-dad

I also attached a picture of me and my dad.

Thanks to everyone who read my little snippet. Even though I currently don't know anyone I have been using these posts to help navigate dialysis and all its annoying issues since I started in September 2013.
I look forward to having some people who know exactly how much it stinks!

-Cassie
« Last Edit: November 26, 2014, 12:12:16 AM by pylesch » Logged

Diagnosis: IgA Nephropathy 2012 @ 20 years old
Peritoneal Dialysis Started Sept 2013
Waiting on Transplant List Currently
iolaire
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« Reply #1 on: November 26, 2014, 05:46:28 AM »

Welcome, good news story hopefully that will hook you up with a kidney. Regardless its great exposure for the entire community, the more people know about donation the better.
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Transplant July 2017 from out of state deceased donor, waited three weeks the creatine to fall into expected range, dialysis December 2013 - July 2017.

Well on dialysis I traveled a lot and posted about international trips in the Dialysis: Traveling Tips and Stories section.
Darthvadar
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« Reply #2 on: November 26, 2014, 06:30:02 AM »

Hello... And  :welcomesign; to IHD....

Stay with us... We like good news stories....

Hope to see a lot more of you....

Darth, Moderator....
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Cared for my late mum, Elsie who had Kidney Failure... Darling mum died on July 15th 2014... May her gentle soul rest in peace....
renalwife
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« Reply #3 on: November 26, 2014, 09:23:26 PM »

First, welcome.  Your introductory posting was very interesting.  It is good to get to know the person, and not only the kidney disease.  What is your masters in?
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pylesch
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« Reply #4 on: November 26, 2014, 10:51:44 PM »

Currently I am working towards a masters in Physician Assistant studies but I haven't started PA school yet due to my being sick in my last few years and not being able to finish all of the requirements. But lately I have been thinking about not doing PA school and changing my classes to all education. It's always hard to make big life decisions when life depends on way more than just what you want. So right now I'm just continuing my PA classes and trying to decide if I want to completely change my future.
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Diagnosis: IgA Nephropathy 2012 @ 20 years old
Peritoneal Dialysis Started Sept 2013
Waiting on Transplant List Currently
Bambino_Bear
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« Reply #5 on: November 28, 2014, 07:16:43 AM »

 :welcomesign; Cassie

My husband has been on PD for over a year now.  It works great for us.
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I am a caregiver to my wonderful husband,  He is 4p and started PD October 2013. We have several living donors waiting to be tested for a transplant. Dialysis is a bridge to get us where we need to go. 
He had a transplant in November 2019.
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