New Here and scared

[Brian]

Hi, my name is Brian and I've been reading this site for awhile and finally decided to participate.  I'm a 34 year old male and work at a large home improvement retailer.  I've had chronic kidney disease for about 2 years now caused by my diabetes.  My gfr was about 39 when I was first sent to a nephrologist, quickly dropped to about 25 and stayed there for about a year and a half.  In the past couple months it's dropped to 16.  My diabetes is Very erratic due my antibodies against human insulin.  Sometimes injecting insulin is like injecting water for all the good it does.  Let's see... I take blood pressure pills of course, a once a month procrit shot, a phosphate binder, and 3 of those lovely lasix a day.  Lasix is my favorite drug!  Without it I get fat and can't breathe.  I didn't even realize how bad my breathing was until I started that stuff!  I still gain and lose about 8 to 10 pounds per day, though.  I usually weigh 165 in the morning, gain the weight by the end of the day, and then get rid of it all night long.  My biggest concern right now is work.  I have a very physically demanding job and simply don't have the energy to do it the way I used to.  My employer is not happy.  I'm very excited to be here though and interact with the group!  Thanks for a very informative site!

[MooseMom]

Welcome, Brian!  I have never heard of having antibodies against human insulin, but then again, I don't know that much about diabetes.  We have a lot of members who have renal insufficiency due to diabetes, so you will have a lot of support here.

I am sorry to hear that your kidney problems are interfering with your work.  It is hard to have the energy to do much of anything when your kidneys are shot.  I hope you and your employer can find some way to navigate through this hard time.

I'm very glad you decided to join.

[cassandra]

Welcome to the site Brian

   


Take care, Cas

[Bambino_Bear]

 !



Have you given thought to which form of dialysis you are going to have?  My husband is the same age as you and he does PD.  It works really well for him.  There is a ton of knowledge on this site and I found it very helpful when we started our dialysis journey.  If you have any questions fire away!

~Nikki~

[Brian]

I don't think I can do PD because of the risk of infection.  I tried an insulin pump for my diabetes a few years ago and couldn't handle it because of the horrible infections and swelling I got at every site I tried.  That's just my assumption, though.  I do plan on speaking with my neph about all the options.

[greg francis]

Welcome Brian, I can well understand your concern. Your big decision now is what type of dialysis you will do. As you are working it is possible to do hemodialysis at home. This will take some time to learn but it is possible and it can be done at night while you sleep, but not easy would take lots of practice but worthwhile.
I do not know anything about diabetes so would think you will have to get this stabilised I know this can be done with diet and exercises.
I am new to this web site and have found it very informative, some very helpfull information from many members.

Greg.     

[Jean]

Hi Brian and     to IHD. There are tons of people on this site that have diabetes and do dialysis. You are no longer alone and will always be able to get your questions answered.

[Athena]

Hi, my name is Brian and I've been reading this site for awhile and finally decided to participate.  I'm a 34 year old male and work at a large home improvement retailer.  I've had chronic kidney disease for about 2 years now caused by my diabetes.  My gfr was about 39 when I was first sent to a nephrologist, quickly dropped to about 25 and stayed there for about a year and a half.  In the past couple months it's dropped to 16.  My diabetes is Very erratic due my antibodies against human insulin.  Sometimes injecting insulin is like injecting water for all the good it does.  Let's see... I take blood pressure pills of course, a once a month procrit shot, a phosphate binder, and 3 of those lovely lasix a day.  Lasix is my favorite drug!  Without it I get fat and can't breathe.  I didn't even realize how bad my breathing was until I started that stuff!  I still gain and lose about 8 to 10 pounds per day, though.  I usually weigh 165 in the morning, gain the weight by the end of the day, and then get rid of it all night long.  My biggest concern right now is work.  I have a very physically demanding job and simply don't have the energy to do it the way I used to.  My employer is not happy.  I'm very excited to be here though and interact with the group!  Thanks for a very informative site!

Welcome Brian, sorry to hear about your troubles. I also have not heard of any diabetic developing antibodies to insulin before. I am a diabetic myself. Is this something your doctor has told you that you have? I would like to know more about this when you can.

As for the work situation, it sounds like you really need to speak to your employer as soon as possible about your health concerns. Unfortunately CKD is not going to go away. But before you think about speaking to your boss, it may be worthwhile speaking to your Nephrologist about your tiredness and lack of energy ... It may be due to untreated anemia, which is common in CKD. I find that when I treat my anemia with EPO shots, I soon feel much more energetic. But everyone is different so it's impossible to really say anything with certainty. I'd definitely speak to your doctors about this first of all to cover all your bases on the medical front before speaking to your employer about a possible adjustment in your work duties. Tiredness can also result as a side effect of certain medications as well.

Good luck with it all Brian.

[Zach]

Hi Brian,

Welcome to the community!
 

[Simon Dog]

My biggest concern right now is work.  I have a very physically demanding job and simply don't have the energy to do it the way I used to.  My employer is not happy.  I'm very excited to be here though and interact with the group!  Thanks for a very informative site!

If you go on dialysis, you automagically quality for 100% disability.   You won't even need a social security disability consultant to negotiate for you - if you gather the required paperwork from your clinic, approval is cut and dried on this one.

If you want to continue to work, ask your employer for a "reasonable accommodation" to your limited stamina.   If you are in a Home Cheapo type store, you can ask for a less demanding job - cashier, customer service, or undercover employee looking for shoplifters.    If you boss balks at this, ask to be put in touch with the corporate "ADA Compliance Officer" so you can discuss a "reasonable accommodation" (magic words under ADA).

If you can continue working, you will probably feel better. Once you go on disability, you risk thinking of yourself as a disabled person.

[Brian]

Thanks for all the responses!

Athena, I'm up again in the middle of the night, so I thought, "what a perfect time to discuss my antibodies!"     So it was something I was diagnosed with as an older teenager.  They were wondering why those wild teenage blood sugars weren't going away.  At first, all the doctors assumed I wasn't compliant with my diet and meds.  Finally, I was admitted to the hospital where they fed me and the nurses gave me all the shots (instead of just IV insulin like when I was in the hospital in dka).  Understand that by that point I wasn't able to attend school, and was only out of the hospital for a few days at a time between bouts of dka.  Well, unlike the IV insulin, the shots didn't work any better for the nurses than for me.  So the doctors on base (military brat here) and my specialists did tests for a few months and got some answers they didn't believe.  So they flew me to the big Bethesda hospital in DC, where they consulted with NIH, fiddled with me for about a month and finally believed the results.  I had extreme antibodies to insulin.  On whatever test they did, the antibody levels should have been less than 30.  For someone with 'insulin resistance', that number would go up to about 100.  Mine were at 11,000.  Best part was, they not only worked against human insulin, but also against pork and beef, which I've never even been exposed to!  So now, I take synthetic insulin and switch back and forth between Humalog and Novolog as each quits working.  Even with synthetics, some shots are still like injecting water and don't do anything.  With those issues in mind, a few years ago my doctor wanted me on the list for a pancreas transplant.  The transplant doctors wouldn't even meet with me.  Said with my immune issues, they wouldn't touch me with a ten foot pole, because I would reject (not holding out much hope that b things c will be different b with a kidney transplant).  The general consensus of what to do now, after seeing specialists for years and visiting the mayo clinic, is to give me chemo, destroy my entire immune system, and HOPE the problem doesn't come back.  I said no thanks.  It seems that to most doctors, I'm just a bizarre case they want to tinker with and write a paper about.  Well, someone else can be their lab rat!  Anyway, that's the antibody issue.

Simon Dog,
I have a long term disability plan through my employer that will maintain my pay through age 65 when I start dialysis.  Here's the rub, if I try to stay at work, and just work less, if that ends up not working out, the long term plan will only maintain that latest rate of pay.  So, as far as income, it will work out best if I can work full time and then just completely stop.  The question is, can I hang on that long?  It's getting tough.

[Athena]

Brian, you are indeed an amazing case. I can understand why the doctors want to tinker with you and write papers about it! It sounds like you've made the right decision about your health. I couldn't imagine anyone destroying my immune system and rebuilding it in the hope it will all turn out okay. What sort of control are you able to enjoy with the reduced effectiveness of insulin? What is your HbA1c like? Are they still trying to solve the riddle of your immune system in any other way?

[kickingandscreaming]

Hello Brian,
I'm new here too.  You don't say whether your'e type 1 or 2 (although i would guess type 1 because on the young onset and the need for insulin).  i'm Type 2 and I know they are quite different.  But I control mine totally through diet.  I've been diabetic for 18 years (and i'm old--73)  but eating a strict low carb diet has controlled me without any drugs and kept me at a 6-7 H1c level.  If you haven't already, you might check out these books: Dr. Bernstein’s Diabetes Solution, and The Diabetes Diet, Dr. Bernstein’s Low-Carbohydrate Solution.  Richard Bernstein, himself a long-time Type 1 has helped many diabetics handle their disease much better.  The medical establishment (the diabetic and the dietetic one) have been really slow on the draw to what seems obvious to me:  If you can't handle carbohydrates, then you probably should curtail your intake of them.  The establishment has been pushing just the opposite perspective to the great harm of most diabetics.

K & S

[Michael Murphy]

Brian many people work full time while on dialysis,  there is no way to predict how you will tolerate the process.  I have been on dialysis for 2 years now for the first 18'months I held a full time job as a Solaris admin   I went out on disability because the company I worked for kept screwing with my paycheck.  Since I had long term disability I went out and at 64 I am retired.  But I am glad I worked for the time I did on dialysis.  The good thing about long term disability is is is not counted as salary during the first 5 months needed to start Social Security Disabilit.

[Brian]

Well, I got some news today.  I caked the doctor yesterday cause I've been so sick.  He had some blood drawn and saw me this morning.  My gfr has dropped to 10 and he wants me to start dialysis.  Good news is he wants me on PD and thinks it'll work fine for me.  I see the surgeon next wed.

[iolaire]

Good luck, you may find that some of your energy is recovered when you start dialysis.  As they clean your blood your body, it will be able to decrease some of the energy its expending trying to deal with the toxins in your system.  When I started I recovered a good bit of energy, enough that it was noticeable.

[Bambino_Bear]

If you have any questions about PD feel free to ask.  We have a lot of people with experience.  Also in the Home Dialysis section there are some really great threads.

Nikki

[Simon Dog]

Good luck, you may find that some of your energy is recovered when you start dialysis.  As they clean your blood your body, it will be able to decrease some of the energy its expending trying to deal with the toxins in your system.  When I started I recovered a good bit of energy, enough that it was noticeable.

The big change for me is that I no longer opened my car door at stoplights to puke on the road.

[Rerun]

Welcome, I'm so glad you joined us.  There is a lot of support here.  Jump in.

Welcome - Rerun, Admin.

 

[Darthvadar]

Hi Brian, and  to IHD...

It's perfectly normal to be scared when something as monumental as Renal Failure strikes... Visit us often... Lean on us, we really GET it!...

Thinking of you...

Darth... Moderator...