Hello from Ezilu

[ezilu]

OK where to start?
HIstory rare aggressive cancer at age 3 in 1974
Endured 30 doses of radiation 70's style, as in FLOODLIGHT not this pinpoint, body mold, tattoo sh+t they have now. 4 years of chemo, 4 years paralyzed. I've probably had to learn how to walk a good 5-6 times in my life. Surgeries; I lost count after 26.
Lost left kidney age 10 after several years of infections and damaged ureters. right kidney at 25% function at that time. Underwent a urostomy under the condition that should my function rebound it would be reversed. Allergic to adhesives so it was a long 5 years but I rebounded kidney at about 60%-70% when I had it reversed age 15.
Smooth sailing through my 20's, 30's, 40's. Low protein diet, low salt, skipped the processed foods, moderate drinking, social smoker, cleared my house of heavy chemical cleaners after acute kidney failure from bleach exposure in my 20's. Two-week hospitalization and back up.
Now for the dark part.
Psychopath roommate poisons me with bleach in my tea for about a two months. It takes me three months to figure it out. Because "WHO THE F DOES THAT?" Unbelievable.
Vomiting, ammonia taste in my mouth, severe bruising, multiple tests ran, diagnosed with acute kidney failure, no cause found, told I would lose my kidney in 3 years. 3 years and they can't save it? You got to be kidding me.
Job had me traveling and kidney function along with symptoms were in flux with road time.
Asshat threw bleach over my entire apartment after I asked him to move, we obviously weren't getting along and being sick I had no tolerance for his antics but to come to the realization that he had been poisoning me after several red flags and some discovery was, mindblowing, because again, WHO DOES THAT!? What kind of human being attempts to kill someone and just watches them slowly deteriorate and die? You want to believe these people don't exist even when all signs point to yes.
So yeah, I survive cancer endure multiple years of operations and long recoveries only to be poisoned by some idiot pyscho. Yes, I called the cops. I brought them in after he bleached my house they said there was no way to prove he put it there without a confession. They didn't put a lot of effort in seeking him out and at that time I thought it was just property damage. Unfortunately, it was far more serious as those of you on dialysis know, my life as I knew it was over and is over. Dialysis is just some F'd up life support.
I lived up those last three years with no intention of going on dialysis. Spiraled down, stopped urinating and was set on falling into a peaceful sleep. HAHA because kidney failure is a "gentle death" RIGHT??! uh NO. Not for everyone and definitely not for me. I spent 4 days vomiting, cramping from my toes to my throat, with horrible diarrhea. Peaceful death my ass. My neph kept calling me, I stopped answering after he said they would have to put a cath in my neck to start dialysis, "You're high" I told him "There's no way in hell I'm going down like that" "it's been nice knowing you, thanks but no thanks" By some miracle or mistake I presumed urinating on day 5. What can I say I'm a Rolex. A damn cockroach. I'm here for a reason. Whatever that may be!
So cut to 2.5 years on dialysis, surviving a severe 6 day undiagnosed run of sepsis in my first month, (cockroach, I told you) due to some dental work without antibiotics, I was certain it was the dialysis, but no. In a long recovery following a year in the hospital and multiple hip surgeries, the sepsis chewed through my hip and thigh. Uh yeah, 3 years come October 2018. I spend my time studying various aspects of dialysis. I read a minimum of 3 studies, articles, journals a week but more often a dozen. My motto is "Doctors not Dictators" I wrote my own dialysis RX after 6mos, but I'm still tweaking it.
I run 3x a week, exclusively on 1K. 2.5hrs, 365 BPS, Baxter 150 with 15G needles, 1000 bolus heparin, no drip, I clot in under 2 mins and do run into problems setting up, but my runs are solid and have only had to strip my lines once maybe twice, usually due to some tech error. I always use oxygen during my run, set at 2.5 3 for support. My blood pressure runs high the longer I'm on, but I'm stable at home. I have 50ml of Benedryl injected at the top of my run and again an hour later due to allergies and irritation and anxiety. My dose is maxed out and one of the highest in the clinic. My metabolism is extremely high, I'm always hungry and meds run right through me. On the opposite spec, I do not tolerate extended release after multiple operations exposing my gut. Yeah, apparently your guts don't like to be exposed, which is partly why I suspect they stopped slicing everyone willy-nilly guts to the wall. I wear a mask and gloves for protection and am a nut about keeping my access covered while not running and my hands clean. (I do not F++K around.) I clear about 55 pints a run and being that I have about 10 pints of blood in here, I'm passing through that filter about 5.5x. I'm still urinating after some very unconventional methods. My weight gains are about 2.5-3kilos
If you think that's a light RX, I'm 5ft, 45.5Kilos (100lbs)
I am chronically anemic, I'm working on that, it is so far beyond eating enough protein and iron. My albumin is 4.4. I lose a min of 100ml of blood a month due to labs, clotted lines and not getting a good 10ml returned per session due to an allergy to the pre-loaded saline most hospitals and clinics use these days. They sterilize that crap in the hard plastic syringes causing minute particles of the plastic to leach in. Also, dialysis is damaging to red blood cells. Epo and intervenous iron do push your hemoglobin but create smaller substandard RBC that fail to circulate a proper amount of oxygen.
I had buttonholes placed after a nasty infiltration. You never know what quality of tech you're going to get and I like to travel. Being that infection is the second biggest threat, I figure the less contact the safer I am.
I pre-prep at home by washing with warm water and an antibacterial soap mixed with Hibiclens an antiseptic, numb up with lidocaine/prilocaine cream, bandage up and go. I refuse to was in clinic sinks. I prep and self-cannulate as well as what is it? decannulate? I pull my own needles.
I'm demanding, self-advocating, and refuse to take crap from any Doctor, Nurse or Tech. I have moved clinics, kicked nurses and tech off my chair and at the same time I try to show my appreciation with a full understanding that my life is ultimately in their hands.
I've thought about home hemo and initially thought that was the way I would go but don't have a partner. My run time couldn't be any shorter, I would have additional set up time and I would have to check in for my infusions. On top of that I would have to endure without Benedryl, so I'm looking at a 2.5hr anxiety attack, while I try to resist the urge to rip out my needles and scratch myself to death.
So yeah, what else can I tell you? I'm 47, I'm on the transplant list at UCSF and I'm hoping that damn biomechanical kidney hits the market because my wait time for an O neg kidney is 6-8 years. I have concerns about a traditional transplant because Immune suppressants seem completely counterintuitive to a healing body so "No thanks" and Skin cancer? "I'll pass." But dialysis is an exhausting marathon through hell and if offered a kidney you bet I'd take it! This is not life, it's life on pause. I got my head down and I'm swimming for that far shore hoping to get to the next chapter in my life, hoping to hell this isn't it and fully aware that, it very well, may be.
I have no family support, but a strong network of friends. So count me blessed.
That's all for now,
Ezilu

[Simon Dog]

because my wait time for an O neg kidney is 6-8 years.

When I was in the hospital transitioning from PD to HD, a nephrologist asked my blood type.  I said "O neg".    He responded with "that's too bad" and walked away.

[Paul]

 

Hello ezilu welcome to the site.

You seriously seem to have gone through it. Not sure if I should offer my sympathies for your suffering or my congratulations for surviving it all.

For anyone reading your post and wondering how you survived it all, I would say the answer is in the line "I'm demanding, self-advocating, and refuse to take crap from any Doctor, Nurse or Tech." I spent 3 months in hospital, nowhere near as serious as your problems, and there are several occasions where, if I had not said "No" to a doctor or nurse I would be dead by now. And I am about to start medical treatment that would not be necessary if a doctor had not won an argument with me two years ago. So well done for keeping yourself alive by arguing.

[Charlie B53]

Welcome to our IHD Family of the afflicted.

Wow, you've had to learn a lot with as much as you've had to endure already.  And starting so young with so many problems.

I hope you are Female cause I think I am falling in love with your attitude.  We have to be our own advocate and become very involved with all medical decision making as Doctors and Nurse do NOT always know what is really right for us as we are individuals and dn't always conform to the masses.

You should be proud of yourself for making those decisions.  Keep up your studies, it does help.

Take Care,

Charlie B53

[ezilu]

because my wait time for an O neg kidney is 6-8 years.

When I was in the hospital transitioning from PD to HD, a nephrologist asked my blood type.  I said "O neg".    He responded with "that's too bad" and walked away.

Yup, we are the "universal donors" which makes our wait on the list an especially slow one being that just about everyone on the list is potentially eligible for any O neg. I was actually lucky enough to have a friend offer to donate from the start and our antigen match was nearly as close as twins. For not being a blood relative it was a rarity, but it wasn't meant to be, She had a 6mm stone and family history of stones. I can only think that we were meant to find that stone before it launched loose, but she has yet to do anything about it other than drinking a "stone breaker tea" and change over to distilled water. She has no health insurance and it makes me crazy to think about.

[LorinnPKD]

If there was ever an intro that felt like it's been shot out of a cannon, it's yours.  In the best way!  I don't think I breathed the whole time.  If you're up for it, please write a novel about all this because wow.

I'm O+ and my wait here in Colorado is similar.  They said possibly nine years as the wait seems to get two years longer every five years.  I'm 42 now and resigned to spending the balance of my 40s waiting it out.  If they come out with the mechanical kidney, I'm more than happy to be a guinea pig.

I hate those pre-loaded syringes.  I read a peer-reviewed study that the plastic caused no harm, but I remain skeptical. I used to be able to convince a tech to draw from the saline bag instead but since then it's been written in stone and no luck.

Anyway, welcome!

[ezilu]

Welcome to our IHD Family of the afflicted.

Wow, you've had to learn a lot with as much as you've had to endure already.  And starting so young with so many problems.

I hope you are Female cause I think I am falling in love with your attitude.  We have to be our own advocate and become very involved with all medical decision making as Doctors and Nurse do NOT always know what is really right for us as we are individuals and dn't always conform to the masses.

You should be proud of yourself for making those decisions.  Keep up your studies, it does help.

Take Care,

Charlie B53

Haha, thanks for your support! I am female and I tend to crush on all men named Charlie. Charlies are the most charming men in the world, go figure.
Studies are based on selected masses, medicines and treatment are created from these median studies. When I realized my RX was nearly the same as my 6'7" baby giant pal, I was like "Wait a minute, back the F up!" They had me running 4hrs at 400 BFR. Left me strained, drained and exhausted with GI issues. I found a baby Neph who was willing to partner with me and my more experienced Neph in SF. We worked out a good balance. He has since moved on and I had to break in a transplant surgeon with little clinical experience. It took more time but we have also found our balance. I've also got a top-notch team at Kaiser SF 20 yrs in the making backing me on every platform. Each one the top in their field and well respected by each other. They go beyond their duty and are continuously consulting with each other, at lunch, in the elevator, in the hallways trying to come up with new ways to help me. They are deeply invested. I did fire 5 GP in my first year at Kaiser, it wasn't an easy start and their quality of care was far lower in the 90's so much that they lost their transplant program. Fortunately, I wasn't having kidney issues then.

[cassandra]

Welcome to the site ezilu




   




Take care, Cas

[ezilu]

If there was ever an intro that felt like it's been shot out of a cannon, it's yours.  In the best way!  I don't think I breathed the whole time.  If you're up for it, please write a novel about all this because wow.

I'm O+ and my wait here in Colorado is similar.  They said possibly nine years as the wait seems to get two years longer every five years.  I'm 42 now and resigned to spending the balance of my 40s waiting it out.  If they come out with the mechanical kidney, I'm more than happy to be a guinea pig.

I hate those pre-loaded syringes.  I read a peer-reviewed study that the plastic caused no harm, but I remain skeptical. I used to be able to convince a tech to draw from the saline bag instead but since then it's been written in stone and no luck.

Anyway, welcome!

Thank you so much for the warm welcome, I do hope to start a blog to share the studies I've been able to dig up on various subjects. Those preload syringes for one, I found at least a dozen studies that spoke to the leaching of plastic into the saline and deterioration of plungers. I unearthed a great article that referenced most of the studies and sent it to my doctor. I fought with my home clinic to establish another form of returning my blood as I calculated 30mls of blood loss per week, chronic anemia regardless of iron and epo injections. Oddly I didn't have problems when traveling, other clinics just reverted to procedures post-pre-loads. They call it a "closed return" so you may want to try fight for just that, a "closed return". It avoids those saline bag draws that they worry about and you get all your blood back sans the pre-load. I also took pictures of my rash, whenever a tech asks me about my allergy I whip them out on my phone, it shut down any argument real fast. Most doctors, nurse and tech cant understand why I'm allergic to the pre-load and not the saline from the bags, well it's an entirely different plastic thus different chemicals are being leached. I stored that article somewhere, I'll try and dig it up.

[LorinnPKD]

That would be fantastic!  I would love to read that, because I have been giving them the side-eye ever since they switched to syringes.

And of course the saline bag and the hard syringe are different plastics!  My clinical staff at least agreed on that one, but it took me printing out the article and showing them to let them know that the weird plastic absorption is A Thing.  Other patients complained of the taste, so I eat a peppermint while coming off to mask it...  And it makes sense that the longer they sit in storage, the more they leech.  Some weeks, I can tell if they've opened a new box from storage because the taste is stronger or weaker.

[ezilu]

Hello ezilu welcome to the site.

You seriously seem to have gone through it. Not sure if I should offer my sympathies for your suffering or my congratulations for surviving it all.

For anyone reading your post and wondering how you survived it all, I would say the answer is in the line "I'm demanding, self-advocating, and refuse to take crap from any Doctor, Nurse or Tech." I spent 3 months in hospital, nowhere near as serious as your problems, and there are several occasions where, if I had not said "No" to a doctor or nurse I would be dead by now. And I am about to start medical treatment that would not be necessary if a doctor had not won an argument with me two years ago. So well done for keeping yourself alive by arguing.

Right? It's a blessing and a curse! The blessing is my life has been rich, I've delved into it all, fearless after watching so many of my counterparts die. I had a "little" problem with impulse control growing up and I grew up fast. I've settled down in a bit in my "old age"
I used to get into these screaming fights with my Mamacita as a child. "YOU DRAGGED ME HERE!, WHY COULDNT YOU LET ME DIE?!!" and she'd reply "Hey kid, you dragged yourself here!" However, she was a pioneer and did do a lot to get me where I am with some tough love and shaping a very independent self-managing fighter. I wasn't allowed to spiral into fits of whining or self-indulgent "boo-hoos". I was often reminded that I may live a day, I may live a week, I could spend that time miserable or make the best of what I had.
My surgeries were left up to me from the age of 7. I turned down an exploratory surgery my doctors wanted to do to check for residual cancer that had a 50% chance of leaving me paralyzed, again. I was responsible for ordering my meds, and durable equip and self-administrating them. I was brought up to believe Doctors were merely advisors, I would ultimately have to "Pay the price".
She also stayed with me in the hospital at a time that doctors were insistent that parents go home and "leave it to the professionals" she slept on hard upright chairs, ultimately her guild got together and rounded up used recliners for the Valley Children's Hospital in Fresno (Now in Madera, CA.) and those chairs led to a recliner in every hospital room today. A child with 3weeks to 3mos to live survived all odds, the one major difference, a parent that acted as a personal nurse. For a 3 yr old child that was a major game changer. That was my Mama. I ultimately lost her to breast cancer, life can be cruel.
I'm thankful I'm living in the time of the information age, I really don't know how I would get by otherwise. Doctors are overloaded with patients, we're often stuck with weekly rotating interns in hospitals who regardless of their education have little real-world application or experience.

[ezilu]

That would be fantastic!  I would love to read that, because I have been giving them the side-eye ever since they switched to syringes.

And of course, the saline bag and the hard syringe are different plastics!  My clinical staff at least agreed on that one, but it took me printing out the article and showing them to let them know that the weird plastic absorption is A Thing.  Other patients complained of the taste, so I eat a peppermint while coming off to mask it...  And it makes sense that the longer they sit in storage, the more they leech.  Some weeks, I can tell if they've opened a new box from storage because the taste is stronger or weaker.

I couldn't find the original report of which I spoke but I found another that explains the issue rather thoroughly. It affected not only my taste buds but the smell of my stool and body odor. Ultimately I developed a horrible rash.
The attachment is too big to attach but here is the link!
https://www.medxl.com/cms_files/product_pdfs/Leaching_Effect_EN.pdf
Keep leaning on them!

[Charlie B53]

It should be very well known that 'Charlie's' are heart-breakers.  We can't help it, we're lovable, but we can't stay, we must move on.


I've always hated plastics, in all forms.  Once upon a time products were made of real materials, wood, metal, glass. As a sick kid, constantly needing injections twice daily, RN living next door came over and poled me in the butt until Mom practiced enough the Nurse gave Mom the go-ahead to start poking me.  Mom kept that glass-on-glass syringe in a Tupperware bowl of fresh alcohol, constantly flushing and rinsing the rig and needle before AND after every use.  Constantly changing the alcohol to make double sure that syringe was always sterile.  While she may have learned well, I didn't like it one bit.  What little boy wanted  his Mom of all people to stick him in the butt twice a day?  That's were I developed my aversion to needles.  Which still persists today.

I blame corporate greed for a disposable society and the rampant use of plastics.  I simply won't buy the stuff.  I'll find something else or do without when ever possible.

[Paul]

I've always hated plastics, in all forms.

Quite the opposite for me. As a kid I always wanted to go to Hong Kong to see where all those cool plastic toys came from. As an adult I avoid plastic wrapping where possible and recycle what packaging you cannot avoid, but I still love stupid plastic novelties. A gum machine offered "wall crawling bugs" for 20p (~= 30c), and my reaction was "I have no idea what a wall crawling bug is, but yes you may definitely have twenty of my English pennies for one of your mysterious plastic wall crawling bugs." Still not sure what you do with a plastic wall crawling bug, but I have one, so I am happy.

And yes, it probably is time I grew up!  But not gonna happen!

[ezilu]

It should be very well known that 'Charlie's' are heart-breakers.  We can't help it, we're lovable, but we can't stay, we must move on.


I've always hated plastics, in all forms.  Once upon a time products were made of real materials, wood, metal, glass. As a sick kid, constantly needing injections twice daily, RN living next door came over and poled me in the butt until Mom practiced enough the Nurse gave Mom the go-ahead to start poking me.  Mom kept that glass-on-glass syringe in a Tupperware bowl of fresh alcohol, constantly flushing and rinsing the rig and needle before AND after every use.  Constantly changing the alcohol to make double sure that syringe was always sterile.  While she may have learned well, I didn't like it one bit.  What little boy wanted  his Mom of all people to stick him in the butt twice a day?  That's were I developed my aversion to needles.  Which still persists today.

I blame corporate greed for a disposable society and the rampant use of plastics.  I simply won't buy the stuff.  I'll find something else or do without when ever possible.

Oh don't I know it! "I am the wanderer" is your guy's theme song. "Charming Charlies" my friend and I like to call ya'll. Charming, nonetheless.
I'm same in regards to plastic, this has become a disposable economy. Meanwhile, a plastic island is growing by the day in the middle of the Pacific Ocean. Plastic has made it into our food chain. And we wonder why cancer and kidney failure is rampant. I buy vintage right down to my car, those plastic bumpers are a joke. o_O! My car Stella ripped 3 in half without taking a dent.
 

[LorinnPKD]

At home, I dutifully take my 1s and 2s to the recycling center and try to avoid any plastic that can't be recycled locally.  And then at the clinic three times there's this big octopus bundle of plastic and tubes and towels and tape that gets thrown away.

But I'm grateful.  Someone at my previous clinic was exposed to MRSA when they reused their dialyzer on another patient.  Bad bad bad.  So I'm perfectly happy to have new gear each time.

The pre-filled plastic syringes, I'm told, are required by my state because they are more sterile than drawing from the saline bag.  I don't think it's a cash grab issue.  I was on private insurance for a little over a year on dialysis and I had EoBs that were beyond unbelievable -- that's where the cash grab is.

[Marilee]

Hi, Ezilu, and welcome to the board. 

[Jean]

Really I am so in awe, I dont know what to say,other than Welcome to IHD. Your experiences alone make your posts valuable.I look forward to more.

[Paul]

And then at the clinic three times there's this big octopus bundle of plastic and tubes and towels and tape that gets thrown away.

Both the clinic and the hospital here have bins in pairs. One for anything that could be infectious, which is incinerated, and one for all other waste, which is recycled.

[Charlie B53]

IIRC recent news article on a study of those plastic bottles of water on sale everywhere, and the amount of micro plastic fibers found in them.

What are these micro plastic fibers doing to our health?

It sure is NOT a natural substance, and cannot be good.

How soon will they prove these micro fibers in ALL plastic bottles foodstuffs?

Then how long before legislation begins to ban plastic bottles?

Not soon enough.

Wife is very tired of hearing me rant about the benefits of glass products vs plastic.

Local Mexi-Restaurant has bottled Coke. 11 y.o. Grandson ordered Coke in a bottle, they brought him a glass then realised their error and brought him a glass bottle.  He noticed the difference in taste immediately.












Sp mod Cas

[Paul]

Several recent surveys have found plastic in the fish we eat. Most recent survey in Britain tested packaged fish products in supermarkets, they found (if memory serves) plastic in 75% of the samples. Some time back a similar survey in the USA found plastic in ALL samples.

[LorinnPKD]

Hey Charlie, the Coke in the plastic bottle and the Coke in the glass bottle are different formulations.

Glass bottle "Mexican Coke" is made with cane sugar.  American plastic bottle coke (and the stuff in fountain Coke too) is made with high fructose corn syrup.  American Coke switched from cane sugar to HFCS in the 80s.

[ezilu]

At home, I dutifully take my 1s and 2s to the recycling center and try to avoid any plastic that can't be recycled locally.  And then at the clinic three times there's this big octopus bundle of plastic and tubes and towels and tape that gets thrown away.

But I'm grateful.  Someone at my previous clinic was exposed to MRSA when they reused their dialyzer on another patient.  Bad bad bad.  So I'm perfectly happy to have new gear each time.

The pre-filled plastic syringes, I'm told, are required by my state because they are more sterile than drawing from the saline bag.  I don't think it's a cash grab issue.  I was on private insurance for a little over a year on dialysis and I had EoBs that were beyond unbelievable -- that's where the cash grab is.

The medical field is an especially wasteful industry. There is no way to get around it, single use is the safest practice. There is a lot of push by State agencies to use pre-loaded syringes; they save time, reduce the risk of needle pricks, and safer especially when you have an understaffed clinics and nurses running back and forth. The FDA is still finding problems, with improper use. As in using one pre-load on multiple patients.

https://www.accessdata.fda.gov/scripts/cdrh/cfdocs/cfmaude/detail.cfm?mdrfoi__id=2501052

I have a small overnight bag that I keep unused supplies in ziplocks after I realized they trashed all unused tape, gauze, alcohol, betadine, cloraprep and paws wipes. They buy small rolls of tape but one will last me 2-3 sessions.
I worry about the filters on the oxygen tanks and cross contamination. I also use a disposable blood pressure cuff, that I reuse on myself.
It mortifies me that they used to reuse those filters, GROSS. Up to 40x I was told by a tech when the max was supposed to be 20. That they actually could use them on another patient is beyond my comprehension. Davita has gone to single-use, thankfully.

[LorinnPKD]

Yeah...

Here in Colorado, I have a dedicated roll of tape that they use session to session that they bring out in a box with my name on it.  And it's a good thing, too, because I have to use fancy hypoallergenic tape. 

When I visited Tennessee, they only use the roll of tape once and then toss it.

Both DaVita clinics, but different rules.

[ezilu]

And then at the clinic three times there's this big octopus bundle of plastic and tubes and towels and tape that gets thrown away.

Both the clinic and the hospital here have bins in pairs. One for anything that could be infectious, which is incinerated, and one for all other waste, which is recycled.

Interesting, I wonder which one they incinerate. I remember years back there was an issue of medical waste washing up on the beaches of Los Angelos, CA.