I Hate Dialysis Message Board
Introduction => Introduce Yourself => Topic started by: cuteangrylittlemuppet on November 19, 2010, 11:18:03 PM
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So my story is still a little painful, but here goes. I am a ranter and a comedic writer so it's a lot less angry than it may seem.
But I hate telling sad stories and an angry/funny one is more entertaining
13 months ago, I was a 25 year old working full time, engaged, living in my old college town of Boston (actually went to school in Wellesley, MA but Boston is where we had fun) trying to hold down my first real "job" since graduation. Before this position, I was working in film and music video in Miami and it was so not as cool as it sounds (hence the "real" job). When I was diagnosed, I was working at a small venture capital firm in Back Bay getting ready for B-school when I started experiencing malaise. Now I thought the difficulty eating and low energy was perhaps Irritable Bowel Syndrome (IBS) brought on by my first really stressful job. I went to see my flighty PCP, a ridiculous woman who does nothing but destroy HIPPA by talking about her other patients and gave me my first (and only) really painful PAP smear… more like a Pap drill or a Pap punch actually. So two weeks later she calls my job urgently (TWO… WEEKS… LATER! please forgive the shouting, but COME ON! It's a simple blood test that you do IN- HOUSE, but you drag these women in by the vagina waving around convenience for super busy ladies who'd rather have the their hoo-hoo given a once-over in between meetings and didn't actually provide healthcare. <end rant> ) Apparently her tests came back that I had a creatinine of 10 and a crit of 9. I went to the emergency room after taking the last shower I would have for a year (unbeknownst to me).They shoved the hole in my neck for temp dialysis and after two weeks at the hospital, feeling like I was trapped in a geriatric "The Shinning" (Imagine: 70 year old identical twins with walkers, "Do you have our prune juice, so we can play?") I practically forced them to put in the tunneled catheter so I could start recuperating and go back to work. I also had to do several sessions of Plasma Pharisees to remove a "weird" kinda/possibly cancerous protein in my blood. But psychologically the most trying part was not knowing why. I was never given a reason, I was never told what I did or what went wrong; why my body had turned on me. My kidneys are shrunken and 85-90% scar tissue. I dialyze 3 times a week for 3 hours. I underestimated the effects of Dialysis and I was let go from my fancy-schmancy job in February. I stopped missing dialysis and I got sicker. I dropped to 98 lbs when I am usually between 115 and 125 lbs.
I couldn't think straight, I was weak, I slept constantly and I sincerely thought I was going crazy. I could barely connect thoughts to form a spoken sentence so my writing went right out the window, and that was torture. I felt like they had taken my only lifelong friend! I had lost that wonderful giddy imagination that always kept my spirits up, and I was terrified that THIS is what delirium felt like. The dialysis was making it so I couldn't work and all of my "needed" treatments were making me sick. I was getting delirious and I really thought these people had to be out to get me. Like how else does a normal girl with no health issues wind up on dialysis at 26? I wasn't a drug user, and being Black I had to defend that to the hilt (is that normal?). I have a type of nephropathy is genetic and usually found in Caucasians and Asians (sorry just being honest, unless everyone got the drug use convo? I just found it so demeaning and they really tried to accuse me!) Not to mention my live-in partner had to try to shoulder all the balls I dropped, including finances, housework and ME. I woke up nauseated and vomiting each day, I couldn't even stand long enough to wash the dishes before getting dizzy. I didn't understand. I did a slew of tests and thank goodness everything came back negative for anything really scary except some acid reflux. I was working with Tufts Medical Center at the time, and their only response was happiness that work would no longer be a complication for giving me a kidney that my Significant Other, Sister, and my Mother were matches to give. I was even refused a letter to confirm I was looking to receive a transplant
So when nobody would listen to me I took things into my own hands. I told Deb and the team at Tufts that they can p*ck themselves in their inconsiderate assholes and the dialysis unit was just a nonexistent nuisance, with no medical insight whatsoever. My complaints meant nothing to them. So NO dialysis for 2 months. I had to see if anything would happen. Would I feel sick? Would I feel like I can work again? I didn't get better but I could eat, the pain subsided and my day to day functionality returned to some extent. I sincerely think I was severely dehydrated, but I got no confirmation from my doctors. They even refused to attend to my complaints till I started dialyzing again.Two months later my appointment with Massachusetts General Hospital (MGH) transplant team came up. And the similarities in their general meeting and being at Tufts caused me and my fiancé to explode. Probably not the best idea (shrugs) but when people refuse to listen, I shout. And shout we did, in the middle of a transplant meeting and the offices of the Renal Associates and Kidney Transplant Center at MGH. It was August now, nearly a year after this hell began and we, apparently, had gotten nowhere. It was either cry, smash my head against a wall till they locked me up or shout. They sent up the Social Worker: Bad Idea. All these sweet happy newly married dark haired girls, never seen a bad thing in their lives so they can always tell you there's a silver lining, and she just couldn't take the venom we spewed. We kinda tore her to pieces, a horrible instinct, not in an insulting way just in a, "take us to the guy in charge NOW!" dismissive way. She did nothing to deserve our harsh language. P.S. SOCIAL WORKERS for transplant and in dialysis units SHOULD BE TRANSPLANT RECIPIENTS or they should have someone on staff who has been through the process. Maybe then we'll see some empathy/problem-solving and less nodding and smiling. Well they definitely heard us this time, but I was not going to be taken seriously without an evaluation. They had to be sure I wasn't some crazy chick of the street screaming bloody murder for nothing. Then even after telling them the story, I still had to justify going off dialysis. They assumed I was suicidal (is this normal???), but I wonder if its still attempted suicide two months later? I mean, how slow is this death I am trying to give myself anyway? If I have have 5-8 more dialysis free years as good as the last 2 or 3 then why be stuck on dialysis? And I still don't think that is so crazy, I would get married and spend these years with friends and family, why not?
Jump to the present day… I had to come to grips that I was not gonna be the first female black president anymore (I kinda felt that one coming when I was shooting music videos, but kidney failure was insult to injury). There's no changing the minds of the masses through art or new business tactics to shift the direction of globalism or whatever the hell I was working so hard towards. My life is completely different and dealing hasn't been easy. The struggles continue in dialysis, the incompetency of the staff in clinics is endlessly frustrating. I have even experienced late shift DRINKING by the staff. I complained and the next dialysis session I ended up in the ER (it's just hell on Earth). I pee a lot and have no fluid retention, so every time I get off the machine I am further below my dry weight. I am in-center now beginning the process of home dialysis (waiting for doctors and paperwork) I had a fistula placed last month. I will be doing home-hemo with Nxstage in December. *crossing fingers* I am sincerely excited to be able to take my care into my own hands. Maybe I'll be able to get a small production company I am creating off the ground and I would work with the artists in my (future) husband's studio. I wish I had found this support system in my darkest hours but I am very happy to finally be a part of the community.
Note: please feel free to correct me, I really don't know anyone else my age going through something similar. I am trying to find out what's my "normal" now. I am just so happy to have found a safe space to scream about hating dialysis and the other requisitions of torture to which we have all become accustomed.
cashmere
www.mycashmerethoughts.com
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Well, Holy Cow!!!! What an affair you have been having. So glad you found us and we will all :welcomesign; you to IHD.
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I completely feel some of the same things you are. I'm 24 and my kidneys failed (pretty suddenly...we knew it was a possibility, but in June they were looking better than they ahd in 2 years) and I was diagnosed with ESRD just a month and a half ago. I feel for you because you had such a horrible experience with your staff, but they are not all that way. I personally still pee a lot as well and don't really hold any fluid. The worst person on my team is my doctor...my nurses (well the charge nurse) are great, the techs at my clinic are awesome, my social worker and nutritionist have been angels...but my doctor is a nightmare! When I first had kidney problems two years ago I was randomly assigned to a neph (who apparently rarely takes patients, I found out later) and he's been fantastic. He was blunt, but truthful, and I really liked him. When I got assigned to my dialysis clinic my doctor was changed because Dr. Cox didn't do rounds at the south side clinic (I got assigned there because the a-had chairs, b-were bigger and c-it was closer to my home) so I got Dr. F (I still can't say or spell his name). Every time he has seen me on rounds he has asked me the same ridiculous questions "Have you talked to anyone about your Medicare?" My answer is always the same (has been every Tuesday for 6 weeks) "I'll have it in January...3 months after my diagnosis...nope, can't speed it up...can't do a damn thing about it." I understand why...he wants me to get my fistula (I currently have a chest catheter). Then he asks if I want to do PD. He doesn't get that I really have no interest in DIY...in addition to the fact that I live in a tiny apartment, and have a dog...both no-nos. My nurses have been really good about my treatments. My doctor upped them a few times and the charge nurse countered him, because every time he tried to take off more fluid (they always have taken off a little, just not much) it would make me sick. I hope you have better luck with the home treatments.
I love that you have a sense of humor about the whole thing...that is honestly what has kept me (semi) sane since these shenannigans started. I still cry, but not near as much as if I didn't laugh. I've recently (over the past few days) moved into a state of anger. I get mad about everything, but I just have to turn it around and make a joke about it. Like a guest at the hotel I work at made me laugh the other day...we had been talking about my situation and instead of saying "wow thats a pain in the ass" he said "thats a pain in my failed kidneys" I couldn't stop laughing for like 10 minutes and I'm pretty sure I snorted somewhere in there, haha.
I'm also new to this whole thing (the IHD...and dialysis) but would love to talk more if you would like. I wish nothing but the best for you!!!
Sarah
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Oh cuteangrylittlemuppet! I'm so glad you found us. Your intro was awesome! I love you already! My kidney failure happened much the same way. One day I was a little sick and dizzy and no energy and the next day I was in the hospital with a tube shoved in my neck! Well, that was 25 years ago. I'm still alive. I don't know if that is a scary thing or a comfort to you. >:D
This site is a good one. I like that you can write! Please, please post often. :cuddle;
Best of luck to you and I hope you get a kidney.... someday.
Rerun, Moderator :welcomesign;
PS I agree that social workers need to be either ON dialysis or have a transplant. How else can they have empathy?
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G'day calm and :welcomesign;. That was a terrific, albeit scary, intro. I reckon you'll fit in nicely here. Once again, :welcomesign;.
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:welcomesign; Great intro, hope to hear more from you as you move on to Nxstage. I was 26 when my kidneys failed, basically interrupting my life and plans...but detours are often necessary for us all, although some detours appear to go into hell and back while others are merely scenic reroutes.
I'll just add a word about the social worker thing. I've had great and useless ones and was a SW myself in my second career (doing mostly family therapy with adolescents and their parents...no I don't have kids). I was the worker on the dialysis unit of a hospital once and must tell you that there were patients there who I wanted to smack, precisely because I did empathize with their situations and they were their own worst enemies. There were also arrogant docs and incredible docs, idiotic nurses and angel nurses...stupidity weasels its way into all layers of humanity involved in the adventure that is ESRD. I don't think SWorkers need to have experienced what the people they work with have...they do have to be able to listen to each person though and try to understand what the particular, rather than the generalized experience is like. There's much that could be said about all this SW (and other medical professionals) stuff and I'll never forget the moron SW at one hospital who was so ridiculous that we all just pretended to be asleep when she stopped by.
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Hello CALM and welcome to IHD. :welcomesign;
Your story is a familiar one to many of the folks on here. It's good to see you taking charge of your own care. I am a caregiver for my husband who currently does NxStage here at home. The difference between how he felt duirng in-center hemo and NxStage is amazing. I hope you will experience the same.
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Wow, what a great intro. Welcome to the group. This is a great place for information, rants, screams, etc., plus lots of friends. Glad you found us!
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Welcome and 'pleased to meet ya' :) Hubby on D and we're starting training for nxStage as well in December.. Hope you share you stories :-)
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THanks so much for the warm welcome!!! I needed to vent like crazy.
So my evil alter ego Muriel has raised her ugly head again. Muriel is a self righteous arrogant little prick who demands only the absolute BEST care and (unfortunately?) hasn't felt any remorse for telling her multiple nephrologist's they are dropping the ball. I am still struggling to just get through the paperwork stage to get Nxstage. I am looking forward to a possibly less physically tasking home-hemo option but the medicare/medicaid questions are plentiful. Do we have anyone on the forum who has some experience with insurance woes?
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CALM...I have some experience with insurance claims...might be able to help. You can PM me or start a thread asking your questions and I'm sure some answers will come.
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Hello muppet so glad you found us! loved the honest potrayal of what you are going through. I started D this July and I am 26 years old too. It has been hell for me as well. Just look at some of my post on here...the IHD family can be testiment to my many rants! Hang in there and keep fighting!! :boxing;
xo,
R