I Hate Dialysis Message Board
Introduction => Introduce Yourself => Topic started by: MomoMcSleepy on March 19, 2012, 12:54:17 PM
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Hi everyone,
I am a transplant (ha!) from Kidney.org, where I'm momo1313. My name is Maureen. My husband nicknamed me MomoMcSleepy a long time ago, because I was tired all the time for no apparent reason.
I will do my best to post without mistakes, but I am using a touchpad and it corrects me a lot, which is maddening when I abbreviate or use medical terms.
my story:
Long....you can skip to "2008" to get to the nitty gritty, but the background explains how this all happened...
I was born with rare defects known as cloacal anomalies/persistent cloaca, and a bunch of other terms. Basically, my urogenital system didn't form all the way, so I had an imperforate anus, urethra, and vagina (this is a girls-only defect, with boys it is called something else). I.E., no holes down there. Babies born like me often die of renal failure within the first six months (actually, that's not so true anymore, but when I was born, 1980, it was. I think it's 50% mortality now, but was 80?. Might even be better now.). Also, girls like me usually only have one kidney, and
generally it's on the same side as the formed side of their vagina (sometimes they have one whole side, and not the other, but I don't think I was like that).
so I had one kidney from birth, which was extra large to carry the load, always hydronephrosis too. I was about 7lbs the day I was born, and 5lbs-something the next day, after they drained me. I was sent the day after I was born to a Children's Hospital and had a vesicostomy (continuously draining urinary stoma) and colostomy put in, and I'm sure they did other stuff, too. Things actually turned out fairly well for me, considering. Some kids like me have a ton of other problems, but I can walk, talk, my heart's Ok, etc. I just had to have a lot of surgeries. My mom always said "over a hundred" (this includes little outpatient and exploratory operations, etc). I think I've probably had around thirty large-scale surgeries, though. I have had a lot of time in Hospitals, but was rarely ever "sick"other than infections--these surgeries were for maintenance and quality-of-life improvement.. Until my supposedly "last" surgery in 1995, I had to wear a diaper, pretty much.
I've had several different ostomies, and usually bounced back well from durgeries. My first big problem was in May 1995, when I had just turned 15. I had had a vaginoplasty and colostomy done in December 94, and was back for the rest. From what I understood, this was to be the last of my surgeries. Well, I had a reaction to morphine, so now I can't take that. I developed pancreatitis, which puzzled my doctors, but they figured it was an idiopathic acute case, and left it at that. I stayed in the hospital, for a month, learning to catheterize my new stoma and getting over pancreatitis. I had nine roommates, and was next door to the hemo suite (Urology and Nephrology were on the same unit).. One of my roomates was a mother who gave her daughter her kidney. I got to know her daughter a little then, and later on a trip the hospital had for kidney patients. I met others with kidney transplants and on Dialysis, and it scared the crap out of me, but I thought, there's nothing wrong with my kidney, I just have one...
2003--mitrofanoff was so full of scar tissue, it was twisted like a phone cord inside, I repeatedly had to go into emergency dept. because I couldn't empty my bladder. Sometimes a smaller catheter or guide wire did the trick, sometimes they aspirated with a gigantic needle and sucked the pee out. I got really good at knowing which thing would work. My parents assumed I was waiting too long to pee but it was the scar tissue.. First visit was August 1995, months after the surgery. It was never easy to get in, either, and eventually they gave me a curved catheter, but by 2003 it was done, and the doc said he couldn't promise he could get in next time, I needed a new stoma asap.. I asked them to let me take final exams first, I was a month from graduation (BA).
New stoma wasn't supposed to leak, leaks anyway, and that along with some other life stuff made me pretty depressed a while (pretty laughable now). I had a bunch of surgeries to try and tighten up the stoma, but they didn't help much. My colon-made bladder spasmed a lot. I took Imodium to pee less (to relax my reservoir) and got tummy probs, and had to get a gastroenterologist. Then, I got my MA in 2005, so was off parents' insurance, and had to get cheap individual care insurance from blue cross. Progress halted at this point, as it had periodically my whole life.
So, got my MA in teaching, and worked as a sub and two other jobs while trying to find a permanent position. In summer 2008 I was getting ready to get married, and had applied for a permanent non-teaching job. I also have ADHD, and was prescribed stimulants. I started checking my blood pressure and noticed it was elevated, so my psychiatrist lowered my dose and had me buy a cuff so I could keep track of my BP daily (in 2007). My insurance didn't pay for wellness visits, and I was seeing a charity social worker and psychiatrist for ADHD. Through attrition I lost my low-cost insurance and had to pony up dough for better insurance that included two wellness visits/year. I also got dropped when the charity lost funding, so i needed a GP doc who could prescribe my ADD meds to me, and wanted to see about trying to get pregnant (although there's only been one successful live birth for someone born like me), so I used up one of my wellness visits and showed the new doc my little bp chart that I'd been keeping since 2007.
Summer 2008: My blood tests showed that my creatinine was 1.9, and this coupled with my blood pressure chart alarmed my doctor. Now, doctors and nurses had seen my elevated BP for years when I'd come in sick, but above my objections, they'd insisted that it was white coat syndrome.. I also had a nice urologist who did not charge me, knowing I was broke, but instead pretended he didn't have time to see me, would look at my urine under a microscope, and would give me a prescription when I got a uti. Because he didn't charge me, the visits never officially happened, and my BP wasn't recorded. I also had no labs for those three years, because I couldn't afford them.. So, on this new still-individual and inadequate insurance, I had some expensive tests and scans done, and they found that my ureter had a stricture because adhesions had formed where my ureter and bladder met. I found out then that my pediatric urologist, in 1995, had detached my bladder from my ureter in order to add on the sigmoid colon piece for the augmentation. The sutures at the re-attachment site are where the adhesions (scar tissue) formed. Over time, part of my ureter went aperistalic (limp, dead) and that limp bit cut off flow from my kidney to my bladder...but not totally. This is why I had that "full" feeling, which I used to complain to my then-boyfriend now-husband made me feel like I needed to wash all of the "junk"out of my kidney. In fact, I used to think of Steel Magnolias and cry when I was home alone because I really felt something was wrong, but what was I going to say? I felt off? My kidney felt full of junk? I had been told things were in my head too often for that.
So, I got married and went on my honeymoon with a nephrostomy tube, and it wasn't so bad. We went to Tokyo, though my nephrologist thought I should stay home. My husband joked that if I got sick in Japan, they'd probably give me a new robot kidney and send me back better than I came, ha ha.. I had the PCN in for eight months, and had to take a day off from work every month at my new job to have the tube replaced. The docs were hoping to dilate my ureter, but just seemed to worsen my function by goofing around in there, imho.
2009--found out the bouts of stomach flu and morning sickness and food poisoning and chest discomfort and pain that I'd had since middle or high school weren't stress or flu or depression or anxiety or because of my colostomy or imaginary, but a diseased gallbladder, severe acid reflux, possibly a hiatal hernia, and chronic pancreatitis caused by years of misdiagnosed repeat gallbladder attacks and gallbladder pancreatitis. I had had multiple ekg's, was put on an antidepressant...anyway...gallbladder.
2010, January-had gallbladder out, open cholecystectomy, because I had had so much surgery (it doesn't take much) that I couldn't have laparoscopic. Doc said everything is all "stuck together in there." At same time, had a ureteral resect and re-implant to improve urine flow, since the PCN didn't work.. Terrible experience all-around, took months to get meds right for tummy. Have to take several meds forever because of pancreas... Went home with PICC line for IV antibiotics, husband played nurse. Complications had me in and out for total of two weeks, ER visits, etc. Later that year, when caring for dying father, boss referenced my time off for surgery, and my time off during dad's illness (emergency room visits twice, and one planned week that we took a trip to Alaska) and commented that we didn't hire me to be part-time.
February, 2012: have had nearly-monthly infections ever since Jan 2010 surgery. Had poor care after surgery, doctors were fighting and had bad residents. No teamwork. Anyway, went from about 22 gfr over summer 2011 to 15 during infection in 2012. I'm making less pee (this happens sometimes, but not steadily).. On valentines day nephrologist tells me I have six months to a year before dialysis needed. I start making appointments. I think about what my boss said and talk to HR, thinking I'm going to lose my job and die because that's what happens when you don't have insurance. HR takes care of everything. New boss donated kidney to his son years before, is understanding, and tells the other supervisor about it for me me, and I don't hear any guff about it.
Reading your IHD posts scares the crap out of me. I haven't started yet, but already hate dialysis. I'm also really sad to have never met EPOman, and grateful that he started the site. Tomorrow my brother and I are going to the hospital for transplant testing and a class, an all day affair. The next day I have to have an endoscopic exam on my stupid pancreas cause my dumb kidney is too low-function for me to have an MRI. I am scared to death of dialysis and transplant.. What if I can't get rid of these infections and I am on Immunosuppressants? All of it is awful. No one told me to check my creatinine--I would have! Sometimes I get very angry, but not so often anymore. Sometimes I feel hopeless, and often I feel
tired and don't know if i'm lazy or sick or what.
I feel a wreck today, I didn't want to come in to work, have an infection , but I have used up most of my sick days. I turn 32 next month. I don't look sick, which I find to be a disadvantage.. My tip--don't wear make-up to appointments, or especially to the ER. Look as sick as you feel or they'll pat you on the head and send you on your way like a silly child. In my experience.
God Bless all of you!
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Welcome mcsleepy (for short). Sounds like you have already been thru the proverbial wringer...I am still a ways off (I hope) I came her for all the wonderful advice and knowledge. Keep posting, and give us updates.
:welcomesign; :bandance; :yahoo; :2thumbsup; :clap;
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What a story! You are a real trooper. :2thumbsup;
Dialysis CAN be scary, but it also can become rather routine.
:welcomesign;
Aleta
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Welcome mcsleepy, hope you find information here that will make your trip to dialysis not quite so scary. It can be daunting, but we're here to share the load. Hope things go reasonably well.
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WOW!!!!! Momo, your experiences make mine look so trivial. You have certainly been through it, but yet you have a very good outlook, all things considered. Welcome to the family, and look forward to your posts. Have hubby come on too. We have a caregivers section that is pretty neat in itself. Im a caregiver to my husband, and have found this site to be REAL family!
Again welcome & God Bless you,
lmunchkin
:kickstart;
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Hi, Maureen, and welcome! You've been through so much, literally from the day you were born. Through all of the relentless medical issues, you've managed the elements of a normal life as well--an education, a job, a husband, even some travel in there too. It will be the same when you start dialysis. There's a lot to learn, but you don't have to learn it all at once. There are decisions to be made, but you don't have to make them alone. And when you've settled in to dialysis, it will just be part of your normal life. When you're frightened or angry, come here and tell us about it. Everyone here will understand and support you, and may even have some ideas to help. All the best to you, momomcsleepy.
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Hello McSleepy and welcome to the best online support group, bar none! Glad you joined, and so sorry you have been through so much. :welcomesign;
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WOW McSleepy, you absolutely amaze me. So glad to have you with us and look forward to more of your knowledge.
:welcomesign; to IHD!!
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:welcomesign; Mcsleepy! Lovely to 'meet' you.
Crappity-crap! Life has thrown many nasty moments at you (but presumably lots of lovely ones too, what with the husband and the fabulous trips and the very understanding boss!)
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haha i love the name! Welcome!
After all you have gone through, I have no doubt, that while you will hate dialysis, this wont be as bad as it seems....
as far as the 'proceedure' of dialysis goes I personally think the worst part is the damn blood pressure cuff! it interrupts my naptime :P (yes, i nap for my treatment, and it would be a good nap too, if it werent for that cuff, and the annoying beeps!)
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thanks, all! I have told my husband about the caregiver section, lmunchkin, thanks for the heads up!