I Hate Dialysis Message Board
Introduction => Introduce Yourself => Topic started by: Meinuk on February 22, 2007, 11:13:07 AM
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Hi,
I've been lurking on the boards for a few weeks now, and here's my intro...
I'm 40, working full time at a university and I started dialysis on January 10, 2007. I've got PKD (Polycystic Kidney Disease). I've known about it all of my life, as my mother had it. So, ESRD has been a waiting game for me. I've been on the list for 2 years, so hopefully I'll get the call soon. I do HD in center M/W/F. I had my up-arm fistula placed 18 months ago, by my transplant surgeon. Finally, the fistula is great, but I had a couple of bad infiltrations, and bouts of low blood pressure which made it touch and go for a while.
I have to say that this board has really helped, as I've noticed some pretty disturbing things at my dialysis unit. I was wondering if it was just me, but it seems to be the state of the industry. It really is a case of picking your battles. Health care in this country is really slipping fast. When I started questioning the in-house nephrologist about my bloodwork, she answered "This is a chronic condition" - essentially, she was in no hurry to draw blood for my parathyroid (formerly 686). I was on dialysis for 5 weeks before they drew blood to see what my baselines were (and she still didn't bother to write an order to check my parathyroid).
I understand that bloodwork is monthly, but when someone has just started dialysis, I would think that there would be a check up in a week to see if the meds were appropriate - mine were not. My pre dialysis Iron (Ferr) was a healthy 166. I had been supplementing. When I started, the Dr.'s stopped all of my meds, and prescribed meds for my dialysis run. Of course, they did not prescribe Iron, so my ferr dropped to 15. I had been over prescribed procrit, and it wiped out my iron stores. - now after weeks of being exhausted, I am getting supplemental Iron.
One of my infiltrations was rather dramatic. As I did not describe my pain properly to the tech that was watching my section of the unit, she simply kept dialyzing me, and then, as I yelled and cried with the pain, she ran saline into my arm. Essentially, I was embalmed.
I've attached a picture.
The head nurse of the unit makes it a point of yelling at me "don't move your arm" - here is the joke, I don't move my arm. I am a very compliant patient - my fistula is not fully developed and serpiginous (wavy) the initial needlestick was transverse, and the pressure of the flow worked the needle out of the fistula. This was confirmed by my transplant surgeon who did an ultrasound the next day. I have had four other infiltrations - two upon needlestick, one, when once again the needlestick was too high on my fistula, (to avoid an earlier needle stick infiltration, the second stick had to go above it) and finally, one seepage - the join on the lower part of the fistula. (after the big infiltration, my needle sticks were put close and low to avoid the bruising - this caused seepage - and a lot of pain - then I was told that close needles were not as effective, as they tend to recirculate blood - all that pain for little return - and anemia...)
I don't blame the techs - I blame the industry. I see the basic level of care that we get, and it could be so much better with little effort. - And I am one of the educated patients. What about those people who are uneducated and unable to advocate for themselves? That is why this board is invaluable - a place to see that you are not alone. (I loved the posts for "keep you hands off my chair") I don't know how much I'll take part in the discussions on these boards - I work full time. But please know that I am reading, YOU are not alone - when anyone starts a subject with RANT, or when you all welcome a newbie. And finally, EOPMAN, you are an inspiration. (I write that after reading some rather personal posts as well - the recent misunderstanding and follow up explanations - truly, IHD is a family, bound by blood.)
So, now I have to go back to work, my thanks to you all for being a part of this community. It helps.
Update 11/08
It has been almost two years since I joined IHD, and what a ride it has been. I was in center for 10 months, then I trained on NxStage for solo home hemo. I was on home hemo for a year, and then the call came for a transplant. It has been quite the rollercoaster ride since I joined IHD - I can honestly say that it has changed my life. (thank you Epoman) I have made some amazing friends, and I look forward to the next few years, now that I am a dialysis veteran, and entering this new transplant chapter of my life.
I blogged about my training here: http://ihatedialysis.com/forum/index.php?topic=5229.0 (http://ihatedialysis.com/forum/index.php?topic=5229.0)
There was a newspaper article me dialyzing alone posted here: http://ihatedialysis.com/forum/index.php?topic=7332.0 (http://ihatedialysis.com/forum/index.php?topic=7332.0)
I blogged my pretransplant colonoscopy here: http://ihatedialysis.com/forum/index.php?topic=7900.msg116257#msg116257 (http://ihatedialysis.com/forum/index.php?topic=7900.msg116257#msg116257)
My unit was suddenly closed by the State of NY. I wrote about that on Bill Peckham's blog: Dialysis from the sharp end of the needle.
Here: http://www.billpeckham.com/from_the_sharp_end_of_the/2008/08/dumped-by-your.html (http://www.billpeckham.com/from_the_sharp_end_of_the/2008/08/dumped-by-your.html)
Here: http://www.billpeckham.com/from_the_sharp_end_of_the/2008/08/where-the-ball.html (http://www.billpeckham.com/from_the_sharp_end_of_the/2008/08/where-the-ball.html)
and here: http://www.billpeckham.com/from_the_sharp_end_of_the/2008/09/restoring-my-fa.html (http://www.billpeckham.com/from_the_sharp_end_of_the/2008/09/restoring-my-fa.html)
On 11/2/2008, I was transplanted with a deceased donor kidney. Here is the thread:
http://ihatedialysis.com/forum/index.php?topic=10893.msg187492#msg187492 (http://ihatedialysis.com/forum/index.php?topic=10893.msg187492#msg187492)
4/18/2009
My six month transplant update (a few weeks early): http://ihatedialysis.com/forum/index.php?topic=13494.msg233199;topicseen#msg233199 (http://ihatedialysis.com/forum/index.php?topic=13494.msg233199;topicseen#msg233199)
While I was on dialysis, the most subversive thing I could do to fight depression was start a blog about drinking wine (yes DRINKING 750ml [insert evil laugh here >:D] - of course I never drank a whole bottle myself....or did I? (usually you can tell by the typos). Here it is... My blog, one bottle at a time since December 2007: http://albinnyc.blogspot.com/
October 2009
I am about to celebrate the one year anniversary of my transplant. How things change. When I had my panic attack about losing things in the first few days after my transplant, well, what I attributed to drugs - was actually pretty prophetic. Which made me profoundly sad.
For me, being on dialysis was a battle for optimum care. A battle played out here in the threads of IHD and in countless conference rooms of dialysis units in NYC. They took my machine away fairly quickly after the transplant. Suddenly I had nothing to fight for. For two years, I was going gangbusters for dialysis reform, optimum care for myself and others - I didn't look around, I neglected my friends, and I neglected myself. Depression is a killer, and transplant meds don't help any. No one wants to hear you talk about dialysis reform when you have had a transplant.
Susie (goofynina)'s death changed IHD for me. Her death changed me. We had been close. And as hard as I tried in the last few months of her life - tried to explain to her what she was doing that was hurting her, I sent her binders (trying to get her off the TUMS that she was eating like candy), pushing her to seek help, trying to explain so much to her - when she finally went to the doctor, she knew it was too late. And I felt that I was too late to help her, that "if only" - survivor's guilt took me a long time to recognize and understand. My memories of laughing with her, and the love that she effused with every word and every hug taught me that love really is all we need, and her death will haunt me for the rest on my life. I stepped back then, and tried to keep involved with the IHD community - but it was an effort.
IHD can be amazing, frustrating, life affirming, addictive, hilarious, maddening and heartbreaking but thanks to Epoman and his vision, it will always be here and open for everyone to read - warts, typos, feuds and all.
I am happy that my 500+ posts have a life here. I've gained so much from IHD, I mention it on the dedication page of my new book (Westover: Haunted Lives to be published sometime in the future). But now is the time for me to step aside and stop living in my head and on the internet.
Life really is what happens while you are busy making other plans. And for the past year, I have been living in a fog. In June, I left my job of 9 years to write full-time. I started traveling again. Finally, in September, disappointment cleared the fog and so I will soldier forth into the default world, carrying with me some amazing memories, some humbling realizations and a lot of love for IHD and the people who make this site come alive.
September 2010
I bet you are thinking "What more can she write???" Well, a bit more I guess. I decided to put my career where my mouth was. I am 44, kidney disease and kidney failure have dominated my whole life, why not make it work for me? (and in turn, I can work towards effecting change in the provision of dialysis) I am back in school and I am now working in the industry (I'm writing here on IHD as a private citizen - so I won't be writing much about my "work") But I can say that it is a job that I love, in a career path that just feels incredibly right. As I laughed with my my friends (who have read all of my rants and raves on the internet about dialysis), "The fox is in the hen house - better yet, the fox and her boy kidney are in the hen house".
Now I have had a look from both sides of the curtain, I know that dialysis isn't an easy job - I can be a part of an organization that tries to make a difference in the quality of care for those on dialysis. For now, I am watching, learning and helping where I can. I won't be able to take part much on IHD, but I will be reading everything I can. I remember when I wrote that paragraph at the beginning of my intro years ago - there were problems inherent in the industry - well, now I am in a position to do something about it, rather than just rant here on IHD (although ranting REALLY helped at the time!!!).
You are reading my intro because you read some post of mine and you wondered "Who is this person?" Well, this is me - the journey so far, from January 2007 to September 2010 - just a few short, but eventful years. If you are in NY, you may even encounter me at an event or at a unit. And now you've read the story of how I came to be: From a battered and bruised person sitting helplessly in a dialysis chair, to who I am today, a woman who listens, takes notes, brainstorms and tries to make the world of dialysis a better place.
January 2012
Wow, it isn't easy is it? Five years ago, I started dialysis. Three years ago, I had a transplant. Two years ago I started working in in ESRD over-site. Now I'll say it, I am burnt out. I read these boards frequently, but now I just take part when I see that a question is not being correctly answered. If I seem to you like a "know it all", I am, and I am confident that the answers that I write here on IHD are the same that I give in my day job.
Anna Bennett
"MEinUK"
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Welcome Meinuk,
I'm glad you stopped lurking and decided to join, it's great to have you here. Sounds like you have experienced a lot, and I am glad that IHD has helped you to see the industry as it is.
On a positive side, we are like one big family here at IHD so welcome to the family.
Sluff, Moderator
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:welcomesign; newbie!
I feel for you. My arm looked like that too after the first couple of times we used my fistula. It took a long time to mature. There were infiltrations ... big honking strings of blood clots ... then I got a couple of fistula-plastys (blowing it up with a little balloon). Finally it works quite reliably. I never thought I'd get there, but finally have. Mine is also kind of fussy as there are certain areas, higher up, that won't take a needle because of a clot or because the vein turns ... *sigh*
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Welcome Meinuk, good to have you aboard.
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:welcomesign; Meinuk, to the community!
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Oh, wow...that pic is scary...So sorry... :welcomesign; though!! Good luck with everything!!
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:welcomesign; Thats one nasty bruise. :o Glad you stopped lurking and joined the fun! :cuddle;
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Welcome to our community! So glad you took the time to join us. When someone who has lurked a while joins, I always feel particularly gratified. It means you have gotten know us and still want to be with us. But please don't just read. We need your input! I like the way you were able to dispassionately assess all that you are going through. So post a bit (at least once a week, pretty please). I don't have to introduce you to the site, since you know it already.
Welcome again.
Bajanne2000 / Moderator
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OUCH!
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Welcome Meinuk to the IHD Family!
Glad you decided to join us.
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Hello Meinuk and welcome to our site. "IHD is a family bound by blood." Very good! I love that. Thank you for joining our site you are a welcome addition. Sounds like you have the medical community pegged! God help us.
I look forward to your posts.
Rerun, Moderator
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Hey Meinuk,
Welcome to IHD. :welcomesign;
I think you should consider sticking yourself. There are some great threads on the boards regarding this topic. It really might save your fistula.
I hear you with the PKD. My Father (21 yrs. on dialysis) recently passed and my Brother and Sister and I all were delt this fate. Hope you get the call soon.
Mike
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:welcomesign; Welcome Meinuk! Hey thanks for your post. Its good to have an intelligent, perceptive, and caring person, and from your post you easily seem to be all three. My arm looked like that after the third time they used my fistula and I was royally pissed. Not only did it hurt like hell, but the techs seemed to think that it was somehow my fault! Seems like whose fault it is permeates the concern of the staff, and it is irrelevant. What is relevant is how to stop this from happening in the future. Best wishes and good luck.
Jim
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Thanks all, what a great welcome! :grouphug;
I am off now for my friday round of torture, then hopefully I'll feel good enough after to go see a movie! I like to push my limits.
After my first Dialysis run, I met a friend for dinner and then we went to see Calvin Trillin read from his latest book. Ok, so I fell almost fell asleep in my chair at Barnes & Nobel, but now I can write that I did it!!! Since then, I've been sensible, and taken it easy.
I hope that you all have a great weekend!
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:welcomesign;
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I used to bruise a LOT in the beginning but it gets better with time.
I hope it gets better for you soon!
:welcomesign;
One of my infiltrations was rather dramatic. As I did not describe my pain properly to the tech that was watching my section of the unit, she simply kept dializing me, and then, as I yelled and cried with the pain, she ran saline into my arm. Essentially, I was embalmed.
I've attached a picture.
Yeah, if we don't know the correct terms I have noticed they do misunderstand us. I mean, we are talking English yet they misunderstand .. I feel for you! :cuddle;
I noticed you are a very informed and knowledgable patient. I hope you don't just lerk but DO contribute as your insight is invaluable! Thx for being here! :thx; :cuddle;
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:welcomesign; Meinuk, I too was a "lurker" it took me a while, but it's worth it!! :2thumbsup;
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Welcome Meinuk,
I am formally from Orange County,NY with PKD. I often doubt myself for moving south when
they have infiltrated my fistula (# 8 on 2/23/07) in 16 months. But now I know that this
happens all over and crappy care is everywhere.
Best of luck to you and hope your arm feels better soon. My heating pad is my best friend.
SCYankee
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I don't know how I missed your introduction, but ...
Welcome to our community!
:beer1;
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I never said Welcome to the site! So welcome!