I Hate Dialysis Message Board

Dialysis Discussion => Dialysis: General Discussion => Topic started by: kickingandscreaming on May 21, 2016, 05:01:55 PM

Title: Every now and then it hits me...I'm abnormal
Post by: kickingandscreaming on May 21, 2016, 05:01:55 PM
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.
Title: Re: Every now and then it hits me...I'm abnormal
Post by: hatedialysis2 on May 21, 2016, 05:23:16 PM
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.
 
Title: Re: Every now and then it hits me...I'm abnormal
Post by: Charlie B53 on May 21, 2016, 06:00:43 PM

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'.
Title: Re: Every now and then it hits me...I'm abnormal
Post by: kickingandscreaming on May 21, 2016, 06:16:17 PM
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.
Title: Re: Every now and then it hits me...I'm abnormal
Post by: kitkatz on May 21, 2016, 11:23:39 PM
Never, ever been normal, so if it slapped me in the face I would not recognize it.
Title: Re: Every now and then it hits me...I'm abnormal
Post by: Simon Dog on May 21, 2016, 11:40:01 PM
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.
Title: Re: Every now and then it hits me...I'm abnormal
Post by: kickingandscreaming on May 22, 2016, 02:55:27 AM
Quote
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.
Title: Re: Every now and then it hits me...I'm abnormal
Post by: Charlie B53 on May 22, 2016, 05:16:58 AM

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
Title: Re: Every now and then it hits me...I'm abnormal
Post by: Athena on May 22, 2016, 07:11:25 AM
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  :flower;
Title: Re: Every now and then it hits me...I'm abnormal
Post by: kickingandscreaming on May 22, 2016, 07:21:59 AM
Quote
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.
Title: Re: Every now and then it hits me...I'm abnormal
Post by: Athena on May 22, 2016, 07:49:06 AM
Quote
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?
Title: Re: Every now and then it hits me...I'm abnormal
Post by: Simon Dog on May 22, 2016, 08:22:16 AM
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.
Title: Re: Every now and then it hits me...I'm abnormal
Post by: kickingandscreaming on May 22, 2016, 08:28:49 AM
Quote
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.
Title: Re: Every now and then it hits me...I'm abnormal
Post by: Charlie B53 on May 22, 2016, 07:16:34 PM

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.
Title: Re: Every now and then it hits me...I'm abnormal
Post by: Athena on May 23, 2016, 06:20:24 AM
Quote
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.

Title: Re: Every now and then it hits me...I'm abnormal
Post by: Simon Dog on May 23, 2016, 07:04:23 AM
Quote
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.
Title: Re: Every now and then it hits me...I'm abnormal
Post by: Athena on May 23, 2016, 07:37:54 AM
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?).
Title: Re: Every now and then it hits me...I'm abnormal
Post by: kristina on May 23, 2016, 10:34:45 AM
Never, ever been normal, so if it slapped me in the face I would not recognize it.

... same here ...   ;D
Title: Re: Every now and then it hits me...I'm abnormal
Post by: kickingandscreaming on May 23, 2016, 11:40:56 AM
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:

Quote
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.

Quote
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.
Title: Re: Every now and then it hits me...I'm abnormal
Post by: Michael Murphy on May 23, 2016, 04:07:12 PM
I would like to point out that I have always felt that the so called normal people were the most abnormal people I knew.
Title: Re: Every now and then it hits me...I'm abnormal
Post by: kristina on May 24, 2016, 12:35:51 AM
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 ...

Title: Re: Every now and then it hits me...I'm abnormal
Post by: Athena on May 24, 2016, 06:19:29 AM

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?
Title: Re: Every now and then it hits me...I'm abnormal
Post by: kickingandscreaming on May 24, 2016, 07:47:35 AM
Quote
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.
Title: Re: Every now and then it hits me...I'm abnormal
Post by: SutureSelf on May 24, 2016, 10:25:24 AM
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!
Title: Re: Every now and then it hits me...I'm abnormal
Post by: Michael Murphy on May 24, 2016, 06:48:18 PM
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,
Title: Re: Every now and then it hits me...I'm abnormal
Post by: Charlie B53 on May 24, 2016, 07:54:00 PM

K&S,

If you are not needing insulin then your pancreas is still producing just enough for you to get by.

I was disgnosed type 2 6 months after starting PD.  My first year I was quite insulin resistant however that change during the next year as I lost even more weight.   The effect of always being 'full', or 'wet' with 2 liters in me squeezed my stomach.  I actually got full eating less and only ate what I NEEDED, no more just eating because I wanted to.   So I dropped 100 pounds.   Along with that weight loss my insulin resistance faded.  Moreso I am now actually a bit insulin SENSITIVE.  Where one insulin unit in an average diabetic takes off 10 point blood glucose, mine now that one unit may take off 30 unots of sugar, or MORE if I am the least bit physically active, like just being on my feet and walking around a little.    Needless to say, I haven't been needing very much fast acting insulin for the last 4 months.    AND, where my A1C used to be over 10, my last was 5.8       Am I pickled tink?   Nah, can't be, I'm a 'Guy', remember.  We don't do dat.

Keep taking Care,

Charlie B53
Title: Re: Every now and then it hits me...I'm abnormal
Post by: Erika1212 on May 25, 2016, 12:34:00 AM
My doctor would tell me every month that my function is falling. I don't know if it was the antidepressants that I'm on or just not wanting to acknowledge the severity of what he was telling me but I just did not know how to feel. It didn't hit me till I had my pre evaluation for my catheter placement. The thing that hit me was the way that doctor spoke to me and looked at me. He looked at me like he was sorry and mentioned how young I was. He kept asking if I had any questions. I just didn't know what to say or ask. I went to my car and just started crying. I get emotional just thinking about it. I knew that my life was never going to be the same. I would lose my freedom.
Title: Re: Every now and then it hits me...I'm abnormal
Post by: Charlie B53 on May 25, 2016, 05:35:05 AM


Whoa!   Just because you may be starting Dialysis does NOT mean you are giving up your freedom.   You have to realign your thinking just a little bit.

Dialyiss is GIVING your freedom, keeping you out of........ and you can fill in the blank in so many ways.  Out of your sick bed, as clearing out the toxins wonlt leave you feeling so sick and tired.   Out of a coffin, so you can still enjoy life, living and being with those you love.

Granted a PART of your life is changing, but only those few hours of actual treatment.

Pay attention to all the rest of your time.   This is how you can begin top enjoy things again.  Look, See, Go, Do, whatever you feel capable of doing.
Title: Re: Every now and then it hits me...I'm abnormal
Post by: Athena on May 25, 2016, 07:37:14 AM
My doctor would tell me every month that my function is falling. I don't know if it was the antidepressants that I'm on or just not wanting to acknowledge the severity of what he was telling me but I just did not know how to feel. It didn't hit me till I had my pre evaluation for my catheter placement. The thing that hit me was the way that doctor spoke to me and looked at me. He looked at me like he was sorry and mentioned how young I was. He kept asking if I had any questions. I just didn't know what to say or ask. I went to my car and just started crying. I get emotional just thinking about it. I knew that my life was never going to be the same. I would lose my freedom.

Erika, the looks I have ever received from Nephrologists or anyone else who's looked at my health record - but particularly the Nephs - have been some of the most harrowing looks I've seen. I just seem to pick up doom & gloom like a super-sensitive radar. Nephs understand all too well what renal patients have to go through. They also FEEL it. After each visit, I have to consciously erase the memory of my Neph's face that day. One of my Nephs has actually revealed to me the personal anguish he feels after seeing so many people's renal function decline in spite of all available treatments. I actually felt like I was being put in the position of a therapist. It was like the patient-sufferer was being asked for forgiveness. That visit really tortured me afterwards.

I do not take antidepressants & never have - so don't think it's the effect of the antidepressant you've on. Until Nephs are replaced by robots, we will just have to cope with their commiseration along the way. They are human as well.

If you haven't already, why don't you post an introduction of yourself in the Intro section? I'd love to know more about you and what you are going through.
Title: Re: Every now and then it hits me...I'm abnormal
Post by: Athena on May 25, 2016, 07:53:47 AM

K&S,

If you are not needing insulin then your pancreas is still producing just enough for you to get by.


I would have to agree with that. If your blood sugar control is adequate, then it is adequate, no doubt about it! I'd be thrilled to get by without any meds or insulin.

Title: Re: Every now and then it hits me...I'm abnormal
Post by: Simon Dog on May 25, 2016, 10:13:37 AM
How much freedom you have on dialysis depends on how much you are willing to fight for it.

If you want to sit back, have a tech do the work, never bother with the hassle of making travel arrangements, etc. you will indeed lose a lot of freedom.    Take charge - look into home PD or hemo; learn about all available travel options; understand what travel limits your insurance carrier imposes; and you too can raft the Colorodo or take an Antartic cruise.
Title: Re: Every now and then it hits me...I'm abnormal
Post by: PrimeTimer on May 25, 2016, 01:41:25 PM

When abnormal strikes.

My husband does home-hemo. It hits when we've just settled in for the evening to watch TV when suddenly we realize we forgot to take his vitals and record numbers off his cycler 15 minutes ago. 
Title: Re: Every now and then it hits me...I'm abnormal
Post by: Charlie B53 on May 26, 2016, 07:57:18 AM
..........suddenly we realize we forgot to take his vitals and record numbers off his cycler 15 minutes ago.


LOL    I've done that!     Surprised every time when I do as it is SOO much a part of my daily routine.

Brain fade,  another one of those   D'oh  moments I attributed to aging, or my easily being distracted by something and losing my train of thought completely.
Title: Re: Every now and then it hits me...I'm abnormal
Post by: PrimeTimer on May 27, 2016, 01:41:44 AM
..........suddenly we realize we forgot to take his vitals and record numbers off his cycler 15 minutes ago.


LOL    I've done that!     Surprised every time when I do as it is SOO much a part of my daily routine.

Brain fade,  another one of those   D'oh  moments I attributed to aging, or my easily being distracted by something and losing my train of thought completely.

Ha! We have a freakin' dialysis clinic in the middle of our living room! Do your neighbors? No! But we DO! Guess hubby and I are getting use to the abnormal. We hook him up, watch TV and hope to remember to record his numbers. I am pretty good about keeping up with it but sometimes I don't want to miss a movie scene, especially when it's a "who-dunnit".   
Title: Re: Every now and then it hits me...I'm abnormal
Post by: Simon Dog on May 27, 2016, 04:57:11 AM

When abnormal strikes.

My husband does home-hemo. It hits when we've just settled in for the evening to watch TV when suddenly we realize we forgot to take his vitals and record numbers off his cycler 15 minutes ago.
NxStage is going to be releasing a new version of the Nx2Me software that interfaces with a Bluetooth scale and BP machine.  You still have to hit "accept" on the iPad, but it's a lot easier than manual entry.   NxStage gave me $25 to test drive it.

Now, the trick is getting Fresenius and DaVita to provide the Nx2Me software and iPad to all of their NxStage customers.
Title: Re: Every now and then it hits me...I'm abnormal
Post by: Athena on May 28, 2016, 06:11:17 AM
K&S, there is a remarkable 23 year old Australian male who's been undergoing dialysis since he was 6 years old who is featured in Kidney Week in Australia that has just now ended. His growth has been stunted unfortunately from this legacy but he is educated, working full-time and enjoying life to the utmost. Two kidney transplants have failed in the past and he's had to discontinue PD is now on hemodialysis 3 times a week. A truly amazing story of survival and beating the odds when they are stacked against you (he was even orphaned when he was 6 years of age & has had to survive as a foster child). The emotion from this story has been overwhelming.
Title: Re: Every now and then it hits me...I'm abnormal
Post by: kickingandscreaming on May 28, 2016, 07:46:29 AM
I do know that my sense of "defectiveness" is very relative and that there are others dealing with so much more. And with great courage. My original post was more a description of a periodic jolt that I get when it hits me. Then I go on.

If I need perspective, I just need to visit my ex-husband (a very good friend for 54 years) who has advanced Parkinson's.  I had lunch with him the other day and was so saddened by his deterioration.  He can barely move anymore.  He used to be very athletic and 6'2" and now he's bent over to my height (5'4") and can barely talk.  Although it is very painful to see him like this, it does put my "defectiveness" into perspective.
Title: Re: Every now and then it hits me...I'm abnormal
Post by: Charlie B53 on May 28, 2016, 07:49:17 PM


Someone once said "we each have our own 'Cross' to bear'

I firmly believe that some are lighter than others.

I try not to compare myself to anyone.  As it could go any number of ways.   I just need to pay attention to what 'I' need to do to get through 'My' day.   I try not to think too much about tomorrow, it will get here soon enough and I will deal with that when it gets here.

Just let me make it through today.

 
Title: Re: Every now and then it hits me...I'm abnormal
Post by: Athena on May 30, 2016, 06:00:10 AM
I do know that my sense of "defectiveness" is very relative and that there are others dealing with so much more. And with great courage. My original post was more a description of a periodic jolt that I get when it hits me. Then I go on.

If I need perspective, I just need to visit my ex-husband (a very good friend for 54 years) who has advanced Parkinson's.  I had lunch with him the other day and was so saddened by his deterioration.  He can barely move anymore.  He used to be very athletic and 6'2" and now he's bent over to my height (5'4") and can barely talk.  Although it is very painful to see him like this, it does put my "defectiveness" into perspective.

Your periodic jolt goes without saying K&S. We all get to that same temporary sense of 'defectiveness' on a pretty regular basis from time to time. No rants should ever be treated like eternal gospel on this site!  :)
Title: Re: Every now and then it hits me...I'm abnormal
Post by: Charlie B53 on May 30, 2016, 06:19:57 AM

Dr's are always asking if I am 'Depressed' and/or how often I suffer from Depression.

I don't think that I do any more than anyone else.   Sure, I have my moments, but I immediately look at what I have around me, what I need to get done today, and I have to get up and get at it.   Why waste MY time sitting and fussing over anything that may be beyond my control.   Rather get up and DO something, be in control of something, make a positive difference in something that you can control.

I don't think I can waste MY time being 'Depressed'.   After all, being on Dialysis I believe I am living on borrowed time anyway, I can't afford to waste it.

Just my 2 cents.

Take Care,

Charlie B53
Title: Re: Every now and then it hits me...I'm abnormal
Post by: kitkatz on May 31, 2016, 09:09:30 PM
This year I have kept an x-cell spreadsheet of my life topics I am dealing with. I came up with it and when I want to change something I review the spreadsheet answers and try to see what I need or want to work on this time through.  I find it keeps me grounded and from the depression that sometimes gets to me.  I also us eit to review the good things in my life and either add or subtract things as needed.  I listed the things in my life under each heading.  The questions on the left are ones for you to answer for yourself. 


YOUR   NAME      Roles you have?        Things you have to do?       Family     Friends     People you deal with?     Fun things?       My traits      My Problems
                           
WHO ARE YOU?                           
                           
                           
WHAT DO YOU WANT?                           
                           
What is your purpose?