Hello from Kansas

[solid98]

Long time lurker, first time poster.

Where to start. I've had type 2 diabetes since 1998. Finally got diagnosed with CKD in Jan 2013 when my eGFR came in at 21% . My doctor at the time then showed me lab results from 2010 that showed a eGFR of 40%. Guess my PCP at the time just didn't look that far down on the results.

Anyway, I'm sitting at 17% as of dec 1 2015 and my neph is predicting possibly going PD, the summer of 2016. I'm currently trying to get on the list at St John in Tulsa, just as soon as I get these last two wisdom teeth pulled and lose 40-50 lbs.

As a machinist who works with large, heavy parts in a closed building with an oily smog atmosphere, I don't know how well that will work with a PD tube sticking out of my abdomen. I cannot fathom how I will keep that clean, much less find somewhere clean enough to do at least one exchange in a 12.5 hour shift. What truly bites my backside is I cannot pre plan anything. The Neph is reluctant to talk about maybe doing a fistula or the catheter before it is absolutely necessary, so I'm stuck waiting for things to get worse before they can get better. My company is NOT going to hold my job while I'm out recuperating. I'm going to hate losing this insurance. The last three years have been the best insurance I've had in 25 years.

It's pretty sad when the highlight of your year is hitting your out of pocket maximum on your health insurance, in August.

[Michael Murphy]

Welcome to this place.  I worked for several years after starting dialysis remember your employer must make reasonable accomadations that allow you to continue working.  Dialysis is covered under the ADA  since it is a disability.  The other consideration is to go on a renal diet to prolong the time left on you kidney.  I started eating better lost 30 pounds and delayed the start of dialysis for two years after my doctor told me to start.  Tell your doctor to have your fistula installed.  They take time to mature and are a god send if you need them.  Good luck, I hope you have a long time before you need to go on dialysis.  For the record I am on hemp because I want to be able to swim in the lake when I want to and hero lets me.

[Darthvadar]

Hello, and  to IHD...

Good to see you....

Your PD cathether will be easy enough to secure out of harm's way... My mum was on it for years...

Visit and post often... You'll get lots of support, information, and advice from people who really 'get it'... We're a friendly bunch....

Darth... Moderator...

[iolaire]

Welcome. Please research the fistula on your own. It's one of the best access types and it would be great to have in place should PD not work permanently. Fistula's and heavy lifting are a problem but maybe you could work around it. I see some groin accesses that would retain your arm strength.

Finally research your disability benefits from work insurance and social security incase you loose the ability to work. Dialysis qualifys for disability via SSI. Working is best for quality of life but it may not always be an option.

Good luck.

PS just read about you insurance, all the more reason to get the fistula now. Also read up on disability laws if your company is not very small they might by law need to keep your job and work with your disability.  And we'll you have good insurance make sure you find the best nephrologist you can, the advice on the fistula might be good but on the surface it seems odd.

[Vt Big Rig]

First of All, WELCOME to the site. You will find lots of information and help here.

Like Mr Murphy said, get a fistula installed. It takes time to heal and mature to work correctly. There is no reason to wait until your numbers continue to go down.

Our respective dates are similar, I was diagnosed with diabetes in September 99, kidney disease in October 2012, and started dialysis in April 2015.

To be honest, it is not so bad. I feel much better than I did the last year on dialysis. Having said that, lose some weight, follow a renal friendly diet and hold it of until your body tells you it is time.

Mr Murphy is also correct about this being a disability. You may have to fight legally for your job and insurance but they must make reasonable accommodations.

I am in the construction business. MY boss, bless his soul, took me out of running around the projects when I got sick and basically made a job for me as a contract administrator. I write all the contracts, purchase orders, etc for the company. A desk job; but I still have a job. I cannot thank him enough. The advantage of a small company.

I do home hemo with NxStage so I do not have first hand experience with PD but as I understand some folks need to have the fluid in them all day. That might be difficult in your job. Consider home hemo.

Best of Luck in your journey. I hope you will post often.

[Simon Dog]

I cannot thank him enough. The advantage of a small company.

It all depends on the character of the leader.   Many times, small companies will be less accommodating since any adverse impact on the bottom line is money out of the owner's take home.

I work for an extremely massive company, and they have been absolutely wonderful.   The way departmental budgeting works, my boss and boss^2 (who are the ones held accountable for my salary) don't see any of the extra costs I impose on the company (which is self-insured).  It's pretty much "if the people responsible for letting me continue working don't see the costs on their budget, the costs don't factor into the decisions".

[Vt Big Rig]

It all depends on the character of the leader.   

Exactly ..... in all aspects of life

[solid98]

Thanks for the welcome, everyone.

The work I do necessitates the lifting of up to 75-80 pound blocks of billet aluminum, bracing against my chest/belly, and leaning over the edge of the machine to load parts. I broke the 5th metatarsal on my left foot last year and while the surgeon put me on a 5 pound weight limit, my work couldn't find any accommodating work for me so I was off work 8 weeks. Unfortunately I live in Kansas where the labor laws heavily favor employers. Here you can be fired just for looking for a job and it is legal to deny unemployment benefits for same. Empathy is considered an evil disease that must be eradicated. I don't DARE breathe a word of my condition to them. Luckily, I work a 3 day, overnight, 12.5 hour shift Fri, Sat, Sun so no one in the office knows I exist. Makes it nice for doctor appointments, very convenient.

Whenever anyone talks about being able to work and be on dialysis, they always seem to assume everyone has a desk job or something they can do at home. I can't seem to get anyone here to understand what I actually do for a living and what kind of environment I have to work in. I am very worried about infection but am told, just tape it up. Between the oils I get all over me between the machine and parts, the oil mist in the air from the coolant systems, to all the aluminum and titanium dust from having to burr and blend finished parts, I don't see how it's possible. I've been doing this work for 30 years and don't have a fall back profession. Certainly not for the money I'm making now. Don't have the money to go back to school and make too much to qualify for any assistance.

If I get the fistula as a "preventative maintenance" thing, that will put me out of work until it heals and even then I'm given to understand I will have restrictions on that arm, so catch 22. The groin access is a new one on me, I'll have to ask about that. Home hemo is not an option since I live alone. After what I observed at the clinic during the "Intro to Dialysis" class, I don't want anything to do with in center. I've witnessed more empathy and caring from a Starbucks barista than these people showed.

I've tried two dietitians and both just wanted to play amateur psychologist instead of helping me develop a plan that accommodates both the diabetes and CKD. Ain't nobody got time for dat! I'm trying to find a good cookbook but most of the recipes are beyond my abilities, technique wise.

I'm not depressed about anything. My Russian/German heritage makes me a planner. It is frustrating that I can't seem to act to what WILL happen, I can only RE-act to what DOES happen only AFTER it happens.

Just got a text from work. My insurance premium is only going up $12 a month.    

If you made it this far, thanks for reading!

[Simon Dog]

Can you tell us about the dog in your avatar?   That is one nice looking K9.

Groin access (RN's call it a "dirty line") is a basically an IV into the femoral vein, and is used when access is needed quickly, as it can be done by one MD right at the bed.    It is not intended for general "walking around" use.  There are leg fistulas and catheters, but those are a separate matter.

I would not have any problem lifting 80lbs with my fistula arm, but don't.   I am not concerned about "arm weakness"  but injuries or cuts.   Blood does a real number on blued carbon steel if you don't clean it up quickly.

It's too bad that the clinics have a "partner requirement" for home hemo.  (I hear Bill Peckham once listed his dog).  I do everything start to finish without using my partner for anything except sometimes bringing me the apple peels from her snack (I eat the apple peels, expired tuna, old bread, etc. in my house)

[Michael Murphy]

Not all places require a partner there are places in the Adirondacks in upstate New York that have the technology to monitor home hemo remotely through high speed internet connections.the centers are owned by a small independent dialysis provider.  If they spot a problem they contact the local rescue squad.

[iolaire]

Whenever anyone talks about being able to work and be on dialysis, they always seem to assume everyone has a desk job or something they can do at home. I can't seem to get anyone here to understand what I actually do for a living and what kind of environment I have to work in. I am very worried about infection but am told, just tape it up. Between the oils I get all over me between the machine and parts, the oil mist in the air from the coolant systems, to all the aluminum and titanium dust from having to burr and blend finished parts, I don't see how it's possible. I've been doing this work for 30 years and don't have a fall back profession. Certainly not for the money I'm making now. Don't have the money to go back to school and make too much to qualify for any assistance.

I'm in one of those cushy desk jobs so its easy for my work to accommodate me... I ready about some other people who work on fishing boats or at FedEx or in retail and for those reasons I understand why patients fought for and received the right to go on disability when on dialysis.

Your situation is one where you might need to consider disability that dialysis qualifies you for.  Its may not be the best situation, and your income will probably take a huge/big hit, but its there as a full back.  And if you need to fall back on disability it would be good to get your plan set now well you have access to more money than you will later.

Its good that you know that this is coming and are trying to set a plan.

PS when I say groin fistula it could be leg, its at the line of shorter shorts, but not at the undies, so half way up from the knee.

[solid98]

Can you tell us about the dog in your avatar?   That is one nice looking K9.

The pup was Baby. She was born sometime in june of 2003 and I lost her june 2013. That pic is how I woke up every morning, with her on my chest looking down at me like "Are you up yet?" She was a part small poodle part devil dog. Her legs were only about 4 inches long but she could climb a chain link fence, jump onto the kitchen counter if you left food out, and if we were outside and you dropped your attention for a split second she would disappear like Houdini. I've had dogs all my life, but she was one of those dogs that, once they are out of your life, you can't even fathom getting another one, if that makes any sense. The way I lost her was very traumatic and took me a year to get over. The vet got his payday and I got to watch her convulse on my living room floor for 20 minutes until she finally died at 3:00AM. I had her cremated and her ashes are sitting on my desk with her collar on top. (Her older sister, Sweetie, is next to her. Lost her June of 2015.)

She was the reason for the origin of the "Daddy Monster".   I came home and Baby had gotten into the trash because the GF forgot to put the can up where she couldn't get to it, so Baby strung the trash all over the house. When the GF called home, she asked how the "girls" were and I said "Well, not too good. The Daddy Monster had to come home." She asked what was the Daddy Monster. "The Daddy Monster yells BAD GIRL! and shakes his finger and says BAD WORDS! and asks stupid questions like "Why did you do that?!?" like they are really supposed to answer." In 10 years I never could break her of that. I still catch myself putting the trash can on top of the counter before I leave the house.

[solid98]

Not all places require a partner there are places in the Adirondacks in upstate New York that have the technology to monitor home hemo remotely through high speed internet connections.the centers are owned by a small independent dialysis provider.  If they spot a problem they contact the local rescue squad.

Only have Davita or Fresnius here and both said no way on home hemo without a partner. I don't know if not having a transplant center nearby has any bearing on that or not. I know we lost the transplant center here a couple of years ago, hence the trips to Tulsa or Kansas City. I would have preferred going to KC but I don't have any friends near there whereas I do have friends near Tulsa.

[solid98]

Your situation is one where you might need to consider disability that dialysis qualifies you for.  Its may not be the best situation, and your income will probably take a huge/big hit, but its there as a full back.  And if you need to fall back on disability it would be good to get your plan set now well you have access to more money than you will later.

Its good that you know that this is coming and are trying to set a plan.

PS when I say groin fistula it could be leg, its at the line of shorter shorts, but not at the undies, so half way up from the knee.

Problem is, what little I was able to save, that wasn't going right back out to bills, is now getting ate up by medical expenses. I don't think a bankruptcy judge will let me preemptively file bankruptcy so I can save some cash before I need it. I should have filed when I was off work with the broken foot. I'm now making just over the threshold for being able to get Chapter 7, so it's just a waiting game until, well, whatever happens. I've got one vehicle that is paid for, rent don't own a house, live simply anyway, and according to the SS Benefit statement I got this year would be OK on full disability, providing my CC's go away.

[Michael Murphy]

There is hope here, if you loose your job because of dialysis you should be eligible for unemployment and after 6 months Social Security Disability.  Finally there is a program in which your dialysis program donates money to a kidney fund then the kidney fund pays for your insurance.  The other good news is that the SSA  will provide money for training for a new career choice.  The other thing you should invest in is a disability policy, when I decided to go on disability I covered the 6 months of waiting for SS Disability with a insurance provided by the company I was working for.

[Simon Dog]

I don't think a bankruptcy judge will let me preemptively file bankruptcy so I can save some cash before I need it.

Whatever you do, do not set aside an occasional $100 bill in a "mattress fund", as you need to keep it all in government monitored bank accounts so the creditors and future nursing homes can get their hands on it.

[Simon Dog]

Not all places require a partner there are places in the Adirondacks in upstate New York that have the technology to monitor home hemo remotely through high speed internet connections.the centers are owned by a small independent dialysis provider.  If they spot a problem they contact the local rescue squad.

I believe this is a by product of a NY regulation that requires monitoring for home hemo.   There is a clinic in Albany, NY that also offers home treatment.

We have two dogs.  The one that favors my wife is one of those "once in a lifetime" dogs.  The other is partial to me.   If he goes first, his ashes are going to be saves and mixed with mine before spreading, and likewise if I go first.

[Charlie B53]

My PD Cath comes out of my chest even with the nipples and mid-way between the breastbone and my left nipple.  Changing the dressing is simple.  I can either loop and tape down the cath or wear the belt that has a pocket for the end connecter.  Either works well to keep it safe and out of the way.

Surgery to put it in was a breeze.  Dr did want me to limit my lifting for a few days, but that never seemed a problem.

I did manual exchanges for the first year because our three dogs, and two cats, wanted out at odd times during the night.  Having lost a few of them to  old age I switched to the Cycler machine over a year ago.  It works even better, my labs improved using the machine.

I connect every evening, read or watch TV until I go to bed.  Get up in the morning and disconnect.  No big deal.  Your PD Team should be helping you and come up with a schedule and program for your cycler to suit your needs.

I too worked in a machine shop until the Dr's made my retire to get off my feet because of the massive leg swelling.  I didn't have the heavy lifting.  I manually ground/cut the small carbide insert tool bits to custom order.  Light-weight but very arm labor intensive, repetitious movements.

I don't foresee a problem with you having a cath placed on your first day off.  Especially if you get a 'Holiday' and have only a two day work week sometime soon.

Work would necessarily even have to know that you've had it done.

Take to your Neph about the Cath placement and when it could be done.  Dr prefers the cath be in place and healed at least a month before using it.