Every now and then it hits me...I'm abnormal

[kickingandscreaming]

I'm not supposed to be abnormal... not in my book.  I can go through the day with the illusion/delusion that I'm just living an ordinary life. But every night as I go to hook up to my machine, it hits me.  Again. Right between the eyes.  I live in the world of the abnormal-- people who need to take drastic measures in order to stay alive.  Most of the time I can accommodate this change to my self image.  But some days I just can't. Today is such a day.  Today, I'm just fixated on the daily slog that dialysis is.  It's not horrible.  It's just not how I imagined I would be spending my life at this stage of the game.

[hatedialysis2]

I ask myself everyday, why  me?   I keep telling myself that there is a purpose, a life lesson of some sorts I need to learn from this and all the suffering I went thru.    I know I now appreciate health so much more and always preach to anyone who will listen to take care of it.   I am much more empathetic to folks who are sick.  I went to visit my dad in the hospital last year and found myself helping sick patients who were alone and we're not getting response from staff. is my disease a curse and a blessing or jst a blessing in disguise?   I hope it's the latter.
 

[Charlie B53]

And you are just now figuring this out?

I've know most of my life that I am NOT normal.  No way, shape or form.    I've been called lots of things,  long-hair, hippy, wierdo, freak, red-neck.  And all are true, to some extent.

But 'Normal'?   Nope, never, no way, nada, not even once.

So when it came time to get a hose stuck in my belly it just seemed like the 'Thing' to do.   Normal people don't get a hose stuck in them.  Well, I feel I need to clarify that just a little bit as there ARE some pretty ob-normal people that do stick a hose in themselves, and sometimes each other also.   I don't EVEN want to get into THAT scene.

OUR hose has a nice clinical name, catheter, and is a necessary tool for our life-extending dialysis.   So this really isn't anything we do for fun and games.  It is purely a medical necessity to sustain our lives.   So what?

Maybe WE are setting the new 'standard' of what will become 'Normal'.

As using my cath has become such a routine part of my every day existence, to me it has become my 'norm'.

[kickingandscreaming]

Don't get me wrong.  I've never seen myself as  "normal"  either.  I've always been a bit of square peg in a round hole.  So I don't really mean "abnormal."  What I really mean is "defective."  That feels different and more accurate.

And yes.  it's something I have to "figure out" over and over.  I guess I'm still living in the shock stage.

[kitkatz]

Never, ever been normal, so if it slapped me in the face I would not recognize it.

[Simon Dog]

K&S - you are not a normal dialysis patient.

Normal dialysis patients sit passively in a chair 3 times a week, don't bother learning what all the numbers and blinkenzeelights on the machine mean, and let others worry about the details of their treatment.

You are ahead of the curve by taking charge and taking care of yourself.   Dialysis sucks, but try to be thankful for having the mental faculties and physical abilities for self care, and living in a part of the world where it isn't "come up with the cash for your next treatment or die".     I just finished a hemo run a couple of hours ago.     I wish I were still on PD, but feel very fortunate I am "abnormal" enough to do my own treatments.

This is not how I envisioned spending this part of my life.  My preference would have been to continue to work full time, allow my wife to work the part time job she loves (rather than combining it with a full time job that can be a grind), and spend my evenings doing something other than running a very small dialysis clinic.   But, even with that, life is still good.

I suppose I bypassed the "shock stage" since I saw this coming for years before my doc had "the talk" with me.    I've actually been surprised I have been able to retain as much of a quality of life as I am.

[kickingandscreaming]

I suppose I bypassed the "shock stage" since I saw this coming for years before my doc had "the talk" with me.    I've actually been surprised I have been able to retain as much of a quality of life as I am.

I had 7 years where I "saw this coming."  But because I never felt bad, I think that allowed me to maintain more denial that the day would come.  Also, it was never my plan to stay alive.  My plan was to get conservative care and go quietly into the night. But that's not what I'm doing.  Not going quietly. Going kicking and screaming. So I still get this rude awakening..periodically.  Also, I don't have a life partner as many (not all) of you do. That makes a huge difference. I have my dog but she's 14+ and won't be here forever. Being pretty much totally alone with this and wondering whether I do or don't have quality of life. I'm not feeling sorry for myself.  Just having a genuinely bad existential crisis day.

Thank you all for your input.  I don't think we talk enough on this forum about the changes to self image that comes with this infernal disease. i am by nature a reflective person, so things like this hit me hard.

[Charlie B53]

LOL     I was just trying to imagine myself living in one of those 'Managed Care Facility's'.    They would be constantly on the phone to my son/Daughter, to come get me out of there!

Without a garage or Barn I'd be parking my Harley in the living room.   She doesn't sleep outside at night, or in the rain.


I tell people that it is a wonder that I am still alive.   I almost bought a pack of the iron-on transfer material so I can print my own T-shirt decals.

Dead Man Walking,     and a little one for the pocket.

I didn't develope serious kidney issues until my mid to late 40's but it came as no real surprise.   I had kidney issues playing sports first starting in grade school, then high school.   It's been so long I don't even remember what it was that sent me to the Dr.  All I remember is he told me I could play but to take breaks, not to try to exert myself so intensely.   I was a kid, I don't think I listened too well.

Never a problem in the Army, but I do have to admit there was a lot of 'recreational drug use' that lasted a lot longer than the few years I was in the Army.   And in the early 70's I swore the way the world was going, and the speed I was going, I doubted very much if I would live to see 30.

I'm a hair over twice that now, so I firmly believe that I am living on borrowed time.   Only by the Gracve of God am I still here.

'He' has some yet unknown to me mission that I must accomplish before I am relieved of this world.

Whatever that job is I can only hope that I have the experience and wisdom to complete it well.

Take Care All,

Charlie B53

[Athena]

K&S, I think you're one truly amazing person & I thank my lucky stars that I have 'met' you here. You make a real difference & the world is a better place for having you in it.

I had a bit of an emotional crisis yesterday, to be quite honest, but feel much better today. The ups & downs are really part of our reality. I'm learning to even be prepared for these emotional rollercoaster rides - the trick is to recognise what may be a physical source & what seems to be more of a purely emotional upset only. I don't know if that makes sense or not, but that's my little guiding rule of thumb.

Do you do dialysis every night? I notice in your email signature that you only started D late last year. You're still a newbie, then. Hope you feel much better soon 

[kickingandscreaming]

Do you do dialysis every night?

I do. Every night. Like clockwork. I'm dry during the days. And yes. In the scheme of things I'm still a newbie.

[Athena]

Do you do dialysis every night?

I do. Every night. Like clockwork. I'm dry during the days. And yes. In the scheme of things I'm still a newbie.

How long does D take each night? Do you rest & relax while undergoing it? How do you feel when you're finished?

[Simon Dog]

K&S is on peritoneal dialysis.  Typical protocol for a patient with a cycler is to plug in at night, sleep, unplug in the AM, every day.    When I was on PD, I kept a fill in during the day and did one mid-day exchange at work.  I remember pulling up close to my desk when I had someone if a meeting so he would not see I was draining.

I found it much easier than any form of Hemo, but had to switch from PD to HD for medical reasons.

[kickingandscreaming]

How long does D take each night? Do you rest & relax while undergoing it? How do you feel when you're finished?

My program is 9+ hours.  When it's not sounding alarms, it's very quiet and peaceful. Other than the alarms that go off in the night it's not very intrusive a technology.  But I don't sleep that well so I'm always tired in the morning.  And because i'm diabetic I am not thriving on the sugar bath that I get every night, all night.  I wake up shaky.  This wouldn't be true for someone who isn't diabetic--unless PD makes you diabetic which is quite common and kind of taken for granted by the medical team (why not? It's not THEIR body!).   Until going on PD I had been officially Type 2, but had been controlling totally through low carb eating and daily walking.  Now I can no longer control it so will have to go on drugs--if I don't want to trade kidney failure for blindness or loss of limb, whacked out lipids, etc..  Great trade off.  Actually, I think for someone like me hemo would be a better option except for the fact that i'm needle phobic and I have no care partner so HHD is out of the question.  But the whole sugar part of PD is really problematic IMHO.

[Charlie B53]

K&S,    Chronic tiredness and sleep trouble may be related to sleep apnea and/or snoring.   Mine was/is.   I was so tired I had problems driving mid-afternoon as I could easily 'nod' anytime sitting.   I had to stand to work.   I never realized the seriousness of my problem until the morning aftr my sleep study.   The Tech reviewed my readings for the night.

Pain also wakens me, still.  But I am convinced that if I hadn't have found out and received my CPAP I would have died long ago.

Get tested.    There is a neat home test unit your Dr can order the test.   You simply take the unit home, strap the chest band on along with a few other sensor bands taped to you and go to bed.   Next night put a new cartridge in the machine/recorder and go to bed again. IIRC there is a total of three 'recordings'/nights, turn in the machine and the date is read and interpreted and the Dr receives a full report.

My machine has made a substantial improvement in reducing my 'tiredness'.     You really do need to take the tests.

NO NEEDLES, no pain.   This is a GOT TO thing.    Without my CPAP the mind never fully rests as it should, it is re-awakened before any level of 'restful' sleep is achieved.

Like I said, this is a GOT TO thing.   Anyone and everyone that snores OR has apnea, simple holding of the breathe during sleep,   These people have GOT TO be tested.    Without quality rest the bady ages prematurely, and rapidly.    None of us need that.

[Athena]

How long does D take each night? Do you rest & relax while undergoing it? How do you feel when you're finished?

My program is 9+ hours.  When it's not sounding alarms, it's very quiet and peaceful. Other than the alarms that go off in the night it's not very intrusive a technology.  But I don't sleep that well so I'm always tired in the morning.  And because i'm diabetic I am not thriving on the sugar bath that I get every night, all night.  I wake up shaky.  This wouldn't be true for someone who isn't diabetic--unless PD makes you diabetic which is quite common and kind of taken for granted by the medical team (why not? It's not THEIR body!).   Until going on PD I had been officially Type 2, but had been controlling totally through low carb eating and daily walking.  Now I can no longer control it so will have to go on drugs--if I don't want to trade kidney failure for blindness or loss of limb, whacked out lipids, etc..  Great trade off.  Actually, I think for someone like me hemo would be a better option except for the fact that i'm needle phobic and I have no care partner so HHD is out of the question.  But the whole sugar part of PD is really problematic IMHO.

As a fellow diabetic (Type 1 however), I truly understand. But I don't understand what you mean by a 'sugar bath'? Does PD actually fills you up with glucose/sugar? If so, then that would not be compatible with any diabetic! How high do you BGs go after each session? I really am curious about this.

I certainly agree with you about the need to start taking diabetic medication to control your BGs within acceptable ranges. As a T1D, I am on insulin only and have been since I was diagnosed 2 decades ago. Living the life of T1D is 'abnormal' enough as it is in terms of constant monitoring of BG levels on a glucose meter and endless injections for not just meals but for all the times when one goes higher than expected. On the surface, we may look like we're living the life of any other normal person but in reality we are always anxious about our BG levels & always pricking our fingers to test our BG levels. As life saving as insulin is, it can also kills us if it drops our BG levels too low. It's a 24/7 anxiety for T1 never leaves us alone. For this reason, I can relate to anyone who feels like they're burdened by the restrictions of living with a chronic illness.

I'm not sure of the T2 medications but from what I've heard, metformin is contraindicated in renal impairment. It sounds like you would need to be on one of the others. As for being needle phobic, I too was needle phobic when I was diagnosed with T1 - but I knew I had to get rid of my needle phobia quicksmart if I was to survive. So my phobia was extinguished on day 2! Lol. I don't know how large the needles may be for hemodialysis, but overcoming a needle phobia is possible, is all I'm trying to suggest.

As for sleep, do you rely on a bit of sleep medication as well to help you get a good night's sleep? I think sleep is very important for anyone with a health concern - just as important as a health diet and exercise. Personally I take Ambien and it really seems to help me (without making me too drowsy either).

Anyway, hope you start getting some better sleep soon K&S.

[Simon Dog]

Does PD actually fills you up with glucose/sugar?

PD solution is either destrose based or Icodextrin based.  The later is used for long dwell times, and is much less commonly used since it i much more expensive.     

I'm not sure of the medical implication of carrying around a dextrose filled gut has on diabetics.

Diabetes accounts for a substantial percentage of ESRD, so nephrologists are very familiar with treating such patients.

[Athena]

Simon Dog, Dextrose is a marvelous thing when a diabetic experiences low blood sugar spells (hypoglycemia) but absolutely a no go zone at all other times (unless it's a small dose & is balanced with insulin, perhaps?).

[kristina]

Never, ever been normal, so if it slapped me in the face I would not recognize it.

... same here ...   

[kickingandscreaming]

The basic PD solution is either 1.5%, 2.5% or 4.25% dextrose.  They claim that not much of that is absorbed  But if you are a high or high-average transporter (the speed that your peritoneum moves solutes and fluids back and forth) as I am, there is more sugar absorbed from the PD fluid than for a slower transporter.

 But you are correct, Athena, that it's bad for any kind of diabetic to absorb any "excess" sugar.  That is why I am so dumbfounded that with 38% of the ESRD population in dialysis because they are diabetic (not at all clear that's my cause, however) why the HELL there isn't a push for developing PD solutions based on other substances.  To me, that is absolute insanity.  This is especially an issue for diabetics, but for everyone there is this issue:

peritoneal dialysis (PD) is a safe and effective treatment in short term (3 to 5 years) for stage 5 chronic kidney disease patients. A major limitation to long-term PD has been peritoneal membrane structural and functional alterations over time, resulting in significant technique failure. Much evidence implicates glucose contained in conventional PD solutions as the major cause of membrane changes. Other harmful characteristics of glucose or its degradation products are thought to cause systemic undesirable metabolic and cardiovascular effects.

http://cjasn.asnjournals.org/content/5/4/723.full
This is why PD is typically not successful beyond 5 years and why there needs to be a Plan B.

The metabolic consequences of glucose-PDF include weight gain, lipid abnormalities, insulin resistance and possibly worsened glycemic control [14]. The glucose content of PDF ranges from 1360 mg/dL to 3860 mg/dL. For a typical patient, PDF glucose is systemically absorbed on the order of about 100-300 g of glucose per day and these calories contribute between 12 and 34% of the daily energy intake of peritoneal dialysis patients. In catabolic or uremic patients these may be welcome calories but other patients, who have uncontrolled diabetes, insulin resistance, or obesity, may not benefit from this excess glucose [15].

http://f1000.com/prime/reports/m/7/57/

In other countries they use amino acid-based solutions and bicarbonate solutions of various materials that don't have the same impact on blood sugar.  But our FDA  doesn't approve these.  I think that PD will remain a short-term fix until they have a better handle on this issue.  In the meantime, I and all my fellow PDers should be planning for a Plan B intervention because the need is coming.  And Type 1 diabetics will need to "cover" all the extra sugar with insulin.  There are very few options for Type 2's if they don't want to use insulin (I'm one of them).  I will see an Endo in a week or so to discuss the possibilities.  Meanwhile, since being on PD, my HbA1c has moved from 6 to 6.7.  Not a good trend.

[Michael Murphy]

I would like to point out that I have always felt that the so called normal people were the most abnormal people I knew.

[kristina]

I would like to point out that I have always felt that the so called normal people were the most abnormal people I knew.

How very true ...

[Athena]

In other countries they use amino acid-based solutions and bicarbonate solutions of various materials that don't have the same impact on blood sugar.  But our FDA  doesn't approve these.  I think that PD will remain a short-term fix until they have a better handle on this issue.  In the meantime, I and all my fellow PDers should be planning for a Plan B intervention because the need is coming.  And Type 1 diabetics will need to "cover" all the extra sugar with insulin.  There are very few options for Type 2's if they don't want to use insulin (I'm one of them).  I will see an Endo in a week or so to discuss the possibilities.  Meanwhile, since being on PD, my HbA1c has moved from 6 to 6.7.  Not a good trend.

Well that just sucks KS. With all the diabetics that end up on D, you'd think they'd have a better solution for them than a dextrose-filled one. I wouldn't be confident at all of 'covering' this with insulin. You must have still relatively good pancreatic function to be able to have a HbA1c of below 7% with all that daily dextrose.

If the other type of D, hemodialysis, is not an option for you, then you will need to start some diabetes medication asap. If you could tolerate one shot of insulin injection per day, there is the long-acting insulins that are available as well, Lantus or Levemir that have a 24 hour action profile. Some T2s do take these insulins, although you don't sound like an insulin-dependent T2 to me.

So what sort of needles are used in Hemodialysis? Would you have to insert a needle into your arm? Are there community type of nurses that can do that for you each evening?

[kickingandscreaming]

So what sort of needles are used in Hemodialysis? Would you have to insert a needle into your arm? Are there community type of nurses that can do that for you each evening?

I'm not the best one to comment on this as I have never actually seen the needles with my own eyes.  But I hear that are about the size of knitting needles !  And generally, 2 are used not just one.  When I was in in-center Hemo for a month and a half I was using a neck catheter (since I was planning to do PD later) which is a temporary arrangement and doesn't involve sticking HUGE needles into your fistula.  To me, the whole business is barbaric.  I have admiration for those that can compartmentalize well enough to go through with it.  In comparison to these needles, the tiny insulin needles are a walk in the park (a park I hope I never have to visit).

So far, in this country (USA) there is no program of nurses that come round to help home hemo folks.  That's why they require a care partner (that eliminates me) except in NY state.

I'm not sure my pancreas is the issue here.  I'm 74 and have been diabetic  (or diagnosed) since 1997, so I doubt there's much left of my pancreas. My trick has been eating a very low carbohydrate diet for about 8 years and during that time I have kept my A1c in the 6's.  I eat a lot of good fats and that's where most of my calories have come from.  In my last lipids panel-- just before starting PD-- my cholesterol was 188, so good fat is good.  I'm afraid to see it now.

[SutureSelf]

I'm not supposed to be abnormal... not in my book.  I can go through the day with the illusion/delusion that I'm just living an ordinary life. But every night as I go to hook up to my machine, it hits me.  Again. Right between the eyes.  I live in the world of the abnormal-- people who need to take drastic measures in order to stay alive.  Most of the time I can accommodate this change to my self image.  But some days I just can't. Today is such a day.  Today, I'm just fixated on the daily slog that dialysis is.  It's not horrible.  It's just not how I imagined I would be spending my life at this stage of the game.

No. No. No.  You (and the rest of us in the same boat) are not any less normal or more abnormal than anyone else.  It's our lifestyle that has changed by now having to depend on medical technology to stay alive.  But our core, the essence of who we are, is no different than before.  Bitch when you need about the daily grind of dialysis, but don't take it so personally by coming down on yourself!

[Michael Murphy]

I am stuck with 14 gauge needles and going in they look like the size of the Holland tunnel, coming out they look smaller then a knitting needle,  however one guy at my center is stuck with a 12 gauge needle those things are huge.  Remember after about 6 months the pressure expands the fistula as time goes by the dreaded dialysis bumps develope, with them a blind man could stick a 14 gauge needle into one of them,