After Lurking for 4 years, I am Finally Introducing Myself

[drawingdami]

Hello Everyone,

I have been a member of IHD for over 3 years, and it has taken me this long to work up the courage to write an introductory post about myself. 


It was around my 15th birthday that I got sick.  I was a typical teenager, anxious to get started on living my teenage years. I was just hired for my first real job, was captain of my JV volleyball team, was in all the advanced classes at school and had just come back from a two week study trip to west Africa with a bunch of other students. Mom and Dad were dealing with their own issues--they were going through a nasty divorce and my mother had started developing mysterious and serious health issues. My sister, who is almost 4 years older, had just started her freshman year at Cornell University, and my father had moved back to his home country. There really was very little oversight of me at the time, but I was a pretty good, nerdy kid, so there was little concern regarding me getting into trouble, and since my mother's health was beginning to deteriorate, there was somewhat of a role-reversal and I needed to grow up quickly to be able to deal with my mother's illness. So it's no surprise that I blew off any sense of being unwell as the side effects of a busy, tumultuous life. But the signs were there, and when I look back now, they were shockingly obvious: I was constantly tired and achy, especially in my back, I caught the Chicken Pox AND Strep throat at the same time for the first time ever, I was urinating far more frequently than I should have been and what should have been most alarming of all, what I was passing as urine looked like soap suds, and a lot of it. But like I said, I was 15 and very busy. What did I know?

Finally, everything came to a screeching halt a few weeks after I officially turned 15. I woke up one morning so swollen that I couldn't open my eyes and no shoe would fit. I was rushed to the hospital, and after several days was diagnosed with acute Glomerulonephritis. None of the doctors could agree as to what caused it -- was it the chicken pox? The strep? Did I pick up something overseas? At school? Everything came back inconclusive. All they could tell me was that my kidneys looked like Swiss cheese, and were leaking. I spent months in and out of the hospital as doctors tried to control the disease with heavy steroids, then chemotherapy, to no avail. My acute case had become unresponsive to treatment, and thus I began living with a chronic disease.

For the next 6 years, I did my best to live my life. I finished school and went to college, first away in Virginia, then returning back home to be nearer to my mother, who was declining rapidly. My mother was diagnosed with an aggressive form of  Multiple Sclerosis, and within a matter of months was confined to a wheelchair unable to move anything below her shoulders. Between taking care of my mother, going to school full time and working part time, I literally did not have the time to be sick myself. So I soldiered on, ignoring the signs that my own health was declining as well. My mother died a week before my 21 birthday, and a few months later, my kidneys completely shut down.

I now faced new challenges. My health insurance was under my mother and I was dropped from her coverage shortly after her death. So there I was, no parents, no money, and no idea what to do. My older sister did her very best to support me, but being that she was only 3.5 years older than I was, there wasn't  a whole lot she could do. I started to work on trying to get coverage through Medicaid, which in itself turned into a long, drawn out battle. But I was still in college at the time though, and was able to take out student loans to help pay for medical care and continue school. I also had started dating a young college man seriously, and eventually we moved in together.

I started looking into transplantation. Immediately my sister volunteered to be tested. Much to our shock, were incompatible-- My bloodtype was O, and she was a B. I was devastated. But then my boyfriend offered to get tested, and lo and behold, he turned out almost to be a perfect match. I spent a short time --around 8 months--on dialysis, but finally in March of 1997 I received my first kidney transplant.

For 8 years, I did extremely well. I went back to college to get a masters degree, married the boyfriend, took up running and ran full speed towards the future. Things couldn't have been better when I was blindsided by my husband who suddenly asked for a divorce after four years of marriage. I was shocked--so shocked that I suddenly developed a major rejection episode for the first time ever. With the help of my doctors, my ever supportive sister and some seriously strong drugs, my kidney was saved, but it was severely damaged. It was like deja vu-- I was again seriously sick, uninsured since I was dropped from my now ex-husband's health coverage, again with no money and little idea of what to do. Again,I relied on student loans to care for my medical needs while I battled to get back on medicaid and finished my degree.

My kidney and I plodded along for another 7 more years, slowly getting worse and worse. It was hard-I was struggling to make a living while my health continued to deteriorate. It took 5 years and an administrative law judge to finally get medicaid, but by that point I was deep in debt from medical bills and school loans. Thank God for my sister her husband, and a couple of very caring friends. Many a time they were the the ones to house, feed and clothe me. I had sunk into a deep, painful depression and felt like I had a life in ruins: No husband, no home, no money, and a kidney that was quickly on it's way out the door. I was also unlucky enough to be hit a SUV as a pedestrian and ended up breaking multiple bones. I still kept pushing though, working long hours at jobs I hated, trying desperately to get out of the hole I was in. Finally, a doctor suggested that I apply for social security disability. It took another year of convincing, and then  another 2 years in application , a lawyer and yet another appearance before an administrative judge to finally receive SSDI. Ironically, less than a month later in the beginning of 2012, I had another rejection episode, lost the remaining function of the transplant and I was back on dialysis.

This time around on dialysis has been different. I had heard of home hemodialysis and began to research it. By the time I started dialysis again I was ready with info: I wanted to try the Nxstage system. One little problem though: I didn't have anyone I could ask to train with me as my dialysis partner. My sister had her own family to take care of, and I was not close enough to any friends to request this kind of help from them. Enter stage left, my ex. Though we didn't work as husband and wife, he still cared a lot about me. So he volunteered to train along side me for the six weeks it took to learn how to use the machine.

It has been two and a half years since I started dialysis again, and a little over two years using the NxStage machine. I am listed on the UNOS list awaiting a cadaver kidney. Hopefully, I will get a call soon. I was told that after two and a half years, you are closer to the top of the list. I don't know if it's true or not, but I hope it is. I know now though, that a transplant is not a golden ticket, and I won't be "cured". It comes with its own challenges, just like everything else. In the meantime, I try my best to take it day by day. Some days are better than others for me, but I guess that is the case with all of us, whether you are dealing with kidney disease or not.

Thanks for reading.

[okarol]

Great introduction! It was well worth the wait!
You really have been through a lot. My daughter Jenna was diagnosed at 15 and her dialysis started at 18, transplant at 21.
I helped her so much, and I cannot imagine what you had to go through with caring for your mom and losing her too.
Jenna also lost her transplant after 7 years and started PD in Sept. We are looking for a living donor (the wait time here in Los Angeles for a deceased donor is 10 years.)
You don't say where you live, but you can check the waiting time in your state by looking at data reports on http://optn.transplant.hrsa.gov/latestData/viewDataReports.asp
Are you an artist? I ask because of your name. Jenna draws characters and it is one of her favorite things to do.
Best wishes that NxStage keeps you healthy and a new kidney comes your way!
 

[drawingdami]

Thank you okarol!

I have never really put my story down in words before, so thank you for having a place for me to put it! I'm a little embarrassed by the length of it.

I am an artist--or at least that is what I trained to try an become. I studied Industrial Design and then Digital Design. I've designed various things over the years--kid's shoes, toys, furniture, exhibits. I have mostly switched over to web design because I can do it from home. It has been tough, though. I am a freelancer and it is difficult--for me at least--to work and manage dialysis. I feel like I can't think straight most of the time! I don't earn enough to stop SSDI, though I wish I did. I hate being so broke all the time and am very ashamed to not be up and working and productive in spite of the disease, like so many of you guys here. I'm 41, yet I feel like I'm 101.

I am here in Brooklyn, NYC Baby! In "Do or Die" Bed-Stuy (Bedford-Stuyvesant, a neighborhood here in Brooklyn. Home of the late great Biggie Smalls. )

NYC is a tough town, but the song is true, "If you can make it here, you'll make it ANYWHERE." --at least anywhere else in the US!

Anyway, thank you so much for the warm welcome, and the info. I very much appreciate it.

[willowtreewren]

Yes, this was well worth the read! What a story! Life has handed you lemons, for sure.

I'm glad you came out of the closet here at IHD!

Aleta

[Ninanna]

What a fantastic introduction!  I am so glad you decided to join us. Post often!

[SooMK]

There's nothing like someone else's story to make me realize how lucky I am. I so hope things start falling into place for you. What a ride. Welcome!

[Bambino_Bear]

  to IHD!


Best wishes on a speedy transplant.

[LisaBart]

Wow, you are a tough lady and deserve some very positive vibes your way. Wishing you some very overdue good luck with best wishes...

[PrimeTimer]

Welcome, drawingdami! Sounds like you've taken a few lumps. A doctor once told me that the more lumps we take and the older we are and the frequency in-which these lumps occur, the harder it can be to bounce back. I believe that is true, as I've taken a lot of hard knocks over and over and at this point, am just plain tired but, believe it or not, THE HARDEST part (at least for me) is having to explain over and over and over again to people and particularly to family as to why me and my husband's life isn't better. We too, feel embarrassed to not be more financially stable or more accessable to people or socialable but like you, we are survivors. We are learning what is really important and what isn't. I'm working on not caring so much about what others may be thinking of me and instead, just trying to live comfortably with what I have and with some sort of semblance of peace or normalcy. Not easy tho. That's one of the (many) reasons why I am here on this site. It's like a life buoy in the ocean during a storm. Good luck to you, please post often!

[Poppylicious]

Hello drawingdami and to posting! I second what others have said ... a fantastic introduction (it may have been lengthy, but I read it to the end - and I have a VERY low attention span!) It's lovely that you've finally posted ... you'll be an amazing asset to our little corner of the web! Post often!

*huggles*

 

Poppylicious, Moderator

[Rerun]

Welcome!  Very interesting Intro.  Thank you for joining and sharing with us.  Your Ex hua?  My ex would have wanted his donated kidney BACK!

Best of luck on getting your second kidney.  I hope it is a great one.

Rerun, Admin