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Clara
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« on: October 03, 2012, 08:59:58 PM »

Nothing can prepare you for this, that is what I have decided.  I knew in July my function starting dropping dramatically.  The Neph. said it happens with diabetics this way.  It still made me feel like throwing up when I just received my latest lab results from my Endo appointment.  I went from 22%to 16% in three months.  I was sick to my stomach before I went to my appointment on Tuesday but just thought may be I have a cold or sinus infection.  I do have some chest congestion.  Now I wonder if it is more than that.  I don't even have a vascular access yet.  Honestly, I haven't decided on what type of dialysis to do either.  PD is attractive to me because it seems easier, but I am afraid of infection.  Every hangnail ends of infected on me.  I am not afraid of needles but still am not thrilled about hemo.  I guess the main concern is I want to do it at home.  My husband is smart but I am not sure he is really ready for this either.  I have only been seriously ill once since we have been together.  I almost died and he was scared.  ICU took really good care of me. 

I am SCARED.  I hate to admit it.  I am a very independent person and always thought I would just go when it was my time.  No life support.  Well now I am married and would hate to cause any pain to my loved ones.  I choose this route to stay alive in hopes of a transplant.

Any one familiar with type 1 diabetics on PD versus hemo to help me make a decision would be greatly appreciated.  I expect to be on it anywhere from 1 to 5 years.  I already manage to insert needles and cites for a continuous glucose monitor and insulin pump.  I am not afraid of the medical parts.  I guess I am afraid of not being able to take care of myself.  I have not given up that I can take care of myself yet but admit that I see it in my future as a possibility.  Any and all comments welcome.  Thanks.

Christi
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MooseMom
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« Reply #1 on: October 03, 2012, 09:23:27 PM »

There are plenty of people here on IHD who do their dialysis at home and take care of themselves just fine.  No, it's not easy, but it is not a given that home dialysis will make you an invalid and completely dependent upon a caregiver!  Is there a reason why you might need help?  Has your diabetes caused vision problems or neuropathy that might make it hard for you to be more independent with your home dialysis?

Have a look at the home dialysis/NxStage/PD forums here on IHD, and you should find loads of people who can give you some advice in this regard.  There are many experienced home dialyzors who can help.

You're right...nothing can prepare you for this.  Sure, you can educate yourself on modalities, etc, but nothing can prepare you for the psychological turbulence.  And it is ok to be scared.  Frankly, I'd wonder about your intellect if you WEREN'T scared!  Any smart person would be scared of kidney failure, but a smart person also wouldn't let fear paralyze her.  I don't see you allowing yourself to be so scared that you become inert.

http://homedialysis.org/

http://homedialyzorsunited.org/
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"Empathy is the soul of democracy."  Jeremy Rifkin
Clara
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« Reply #2 on: October 03, 2012, 09:40:37 PM »

I do have some vision problems but fortunately I am seeing okay for now and my eyes are stable.  I am so tired.  It takes everything I have to work and do the basic household chores like laundry and grocery shopping.  I don't cook very often anymore.  I just make a salad.   I am already mixing up words or forgetting them altogether.  Which is funny since my boss told me today I can't go anywhere...lol.  He depends on me a LOT.  I just don't know how it works...will my blood sugar drop while on dialysis or will it go up?  I know whatever happens it will be okay.  I just needed to vent.  I did look at NxStage.  I have watched many Youtube vidoes of Dialysis Dan and others being hooked up to PD, Home HD, and In-Center HD. 

I have an appointment on the 25th and will take a list of questions...lol. 

Thanks.
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Deanne
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« Reply #3 on: October 04, 2012, 07:18:57 AM »

You can do this! You've been through so much already that I can see why you're tired. You're a strong woman. I can't answer your questions about PD with diabetes. I'm not diabetic. I'm single, work full-time, and live alone with 5 cats & dogs. My eGFR is 11 and I'm planning to go on PD if I can't get a pre-emptive transplant, too. I don't have any doubts that it can be done. No one who counts (my neph) expressed any doubts I can handle it. If I can do it, you can do it.  :grouphug;
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Deanne

1972: Diagnosed with "chronic kidney disease" (no specific diagnosis)
1994: Diagnosed with FSGS
September 2011: On transplant list with 15 - 20% function
September 2013: ~7% function. Started PD dialysis
February 11, 2014: Transplant from deceased donor. Creatinine 0.57 on 2/13/2014
AnnieB
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« Reply #4 on: October 04, 2012, 01:14:18 PM »

It is scary when your eGFR drops like that, Clara. You are going to be in my prayers.  :cuddle;
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Clara
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« Reply #5 on: October 04, 2012, 09:32:27 PM »

I appreciate the encouragement.  Had a bad health day today.  Woke up at 5 am throwing up.  I thought this is just part of the renal failure and went back to bed.  Woke up at 8:30 am still feeling very sick to my stomach.  I took my blood sugar and it gave me the message unable to read blood sugar over 600.  Jeez.  I called both kidney and diabetes docs because I hadn't felt like eating much the night.  I knew I was starting to get sick because of sore throat and coughing the previous day.  I had aleardy made an appointment with the primary doc for that.  In the end I had to go to the ER and received IV insulin and fluids.  I have bronchitus so antibiotics should fix me up.  I just wonder how much more strain over 600 caused.

Also why can't all these doctors get on the same bleeping page.  If the Endo could have given me antibiotics on Tuesday, today would never have happened.   :Kit n Stik;
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rsudock
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will of the healthy makes up the fate of the sick.

« Reply #6 on: October 04, 2012, 09:39:56 PM »

 :cuddle;

xo,
R
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Born with autosomal recessive polycystic kidney disease
1995 - AV Fistula placed
Dec 7, 1999 cadaver transplant saved me from childhood dialysis!
10 transplant years = spleenectomy, gall bladder removed, liver biopsy, bone marrow aspiration.
July 27, 2010 Started dialysis for the first time ever.
June 21, 2011 2nd kidney nonrelated living donor
How about another decade of solid health?
malaka
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« Reply #7 on: October 08, 2012, 09:58:34 AM »

I have Stae 5 disease and have been on dialysis since mid-January.  Trust me on this one, you'll feel much better once dialysis starts and you get used to it in about a month.  Swelling disappeared, no longer as short of breath, mentation better.  Not an ideal solution, but life does get better from late Stage 4 CKD.
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MooseMom
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« Reply #8 on: October 08, 2012, 10:26:38 AM »

I have Stae 5 disease and have been on dialysis since mid-January.  Trust me on this one, you'll feel much better once dialysis starts and you get used to it in about a month.  Swelling disappeared, no longer as short of breath, mentation better.  Not an ideal solution, but life does get better from late Stage 4 CKD.

I am so happy to read this, malaka!
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malaka
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« Reply #9 on: October 09, 2012, 12:30:26 PM »

For me, in-center hemodialysis has been more boring than anything.  You quickly get used to being stuck 2 times per session and holding your arm still.  Kindle has been my mind saver....gives me something to do.  And I feel much better, especially the day after dialysis. I was a mess with swelling before I started, and that's all gone now.  Believe it or not, I'm even sticking myself from time to time, and usually remove my needles myself. 
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Clara
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« Reply #10 on: October 09, 2012, 09:07:34 PM »

I am really looking forward to feeling better.  My stomach just refuses to let me sleep.  It rumbles all night long and makes me what to smother it...lol
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malaka
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« Reply #11 on: October 10, 2012, 11:24:08 AM »

Clara, I can't answer your question about peritoneal versus hemo since I've only been on hemo (and because I still pee too much protein am not a good candidate for peritoneal) and therefore lack the ability to compare.  But hemodialysis really is more boring than troublesome.  You will feel better.  Oddly, my sugar (I'm Type 2) skyrocketed because while my diabetes doc had me on Metformin, my nephro put me on corticosteroids.  Apparently, the latter negated the former, and my sugar climbed up over 600, too.  I ended up in the hospital and with insulin.  Thus was my introduction to life with needles.  Anyway, my kidney function continued to decline and I ended up officially Stage 5 last December, with hemodialysis starting last January 13.   

Have you been advised about fistula creation and maturation?  If hemo is your choice (or least bad option) you should be considering that now.  They take 6 or so weeks to mature, and as my nephro told me "better to have one and not need it than to need one and not have it". 

Peritoneal isn't contraindicated in diabetics, but since the solution is dextrose (sugar) and water, your insulin dosing will have to be carefully monitored and probably adjusted. 

Read this thread again 3 months after you've started dialysis.  Slap me around if I misled you in any way.  :Kit n Stik; You will feel better once you've adjusted to dialysis as it does remove the bad stuff that makes you feel bad. 
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Clara
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« Reply #12 on: October 10, 2012, 08:55:43 PM »

Thanks Malaka.  I have been thinking about a fistula.  It is on my list to discuss with the Neph on the 25th.  I have problems with finding veins during the ordinary course of blood work so I don't think I have great veins.  I have read and watched videos on the Fistula and plan to ask for vein mapping to determine if it is even possible.  If not, I will just have to see if the graph will work.  Either of those will do.  I hope to have answers soon.
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malaka
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« Reply #13 on: October 11, 2012, 01:52:46 PM »

I had vein mapping (ultrasound, no big deal) before the fistula surgery.  And you can see some of veins through the skin.  So I think you'd have it done before any surgery.  If not, look elsewhere.

Having lots of free time on my hands at the dialysis center, I noticed one thing that might be of some interest to you.  On fistula patients (like me) I don't have to wear a mask, and neither does the staff treating me.  For those whose access is in the chest, the patient and the staff both wear masks.  Apparently the risk of infection is much lower with fistula than with chest access. 

BTW, I know you don't feel too good, but if you want to do any travel, do it now.  Once you start dialysis in center, you have to travel to places with dialysis centers that have a station free to treat you AND which your insurance pays for (unless you're independently wealthy in which case where were you when I was single?) AND you don't do the picking as centers communicate with each other.  In other words, extended travel isn't easy.  We diabetics, however, are dialysis eligible at GFR 15 (unlike nondiabetics who are eligible at 10) so your window of opportunity is closing. 

One more point to alleviate some of the fears.  When I started, I wasn't told much about what it would be like.  Show up, lie down, and pull up your sleeve.....  However, centers use shifts of 4 hours.  I started on 3rd shift.  And got treatment with mostly "zombies" who got wheeled in on guerneys, used oxygen, were missing multiple parts, were uncommunicative even with staff, etc.  That was very disheartening as I thought I'd sooner or later be joining them in oblivion.  However, at my center, they take the disabled patients on shift 3 (so as not to delay others if problems arise during dialysis) and when I transferred to shift 1, my outlook improved substantially.  Patients reading, watching TV, talking, interacting with staff, etc.  More like being in some sort of massive dental clinic with the ability to talk!  Some resent being there, but in general its not unpleasant.  Just boring as I've said before.
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Clara
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« Reply #14 on: October 11, 2012, 09:38:10 PM »

That is helpful Malaka.  I am not independently wealthy and unable to travel because I am the sole earner right now...isn't that hillarious.  I have been offered a trip to Costa Rica from my brother-in-law but honestly can't see myself hiking through the rain forest and a volcano.  My goal is to live past dialysis and then travel.   Something to look forward to :)

I am a germ phobe so really do want home hemo dialysis.  I imagine will have to begin in center and then transition to home.  I received my letter from the transplant board saying in activated due to preserved kidney function.  My GFR was 22% at that time.  I have to ask how to get reactivated now.  I am trying to be proactive.  Take care.

Christi
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Sydnee
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« Reply #15 on: October 12, 2012, 01:15:22 AM »

Glad you're are being proactive.

If you are going to do in-center even for a little bit I'd say check it out before hand. Our center the 3rd shift is when the people that are working during the day come in. So when my hubby was doing in-center he would go in with 4-5 people between the age of 35-60 and a couple of older people that got rides from their adult children.

Ed started PD about 3 months ago. He is a type 2 diabetic. His blood sugars went up 75 points at first. We made sure he didn't dwell longer than 5 1/2 hours and it lowered back down. (he is a fast transporter) 
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After a hard fight to not start I started dialysis 9/13
started on PD
hoping for home hemo starting to build a fistula 1/14
cause PKD diagnosed age 14

Wife to Ed (who started dialysis 1/12 and got his kidney 10/13)
Mother to Gehlan 18, Alison 16, Jonathan 12, and Evalynn 7. All still at home.
www.donate2benefit.webs.com
malaka
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« Reply #16 on: October 12, 2012, 09:18:07 AM »

Trust me on this one, too.  You WANT to start hemodialysis in a center.  The initial treatments are chosen on the "best guess" theory especially if you're swollen/bloated such as nephrotic syndrome.  You'll want someone watching over you who has seen it before and knows how to react.  Soon, they figure out how much time to treat and how much fluid to remove.  Then you stabilize (well, you do gain water weight between treatments) with your "dry weigh" which is an educated guess how much you'd weigh without kidney failure.  These are not choices I'd like to make on my own at home.  If you read about "washout" in the literature here, you'll get an idea what I'm talking about.  Once you're more stable, that washout diminishes.  At least it did in my case.

BTW, I was going for home hemo, too, but my wife proved ambivilent at best about it.  I explained I'd be inserting and removing needles and that all she'd have to know is how to take me off the machine safely if something went wrong.  Then she learned how much "stuff" is involved...one effectively needs to set aside a room with water access for the machines and the supplies and the chair.  So I'm still at the center.

Yes, I know home hemo is better for me.  I'd do it if it didn't cause friction in the home. Home hemo isn't a cure all as you're effectively tied to the chair for several hours per session, but my advice is try to do it if you can.
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Leanne
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« Reply #17 on: October 14, 2012, 05:19:31 PM »

Nothing wrong with being afraid.  I am a seasoned EMT and took care of my mother while she was on dialysis.  I was at 22% and then had my labs for my next neph visit.  The next day he called and told me to get to the hospital asap.  Not to even waste time packing a bag.  I totally flipped.  Knew it was coming but still I was terrified.  Hugged my big brother and cried like a baby.  I thought I still had a while and I was on a roller coaster ride month to month.  Hoping I still had time but afraid I didnt.  Right at the end it just dropped so sudden.  My doc told me after my first two treatments that even he was scared.  He was afraid I wouldnt live through that first night.

Looking back....there are a couple months that are a blur to me.  Kind of foggy even.  I just felt so bad for so long.  I functioned but not well.  I cant toot the PD horn for you because it was just awful for me.  Never worked and the tube rubbed inside so much and packed with so much protein that I ended up with an abscess the size of a canteloupe.  The tube was taken out in January and the infection has been an issue ever since.  Think its gone and its there.  Again.  I wanted PD so I could do it at home and be more normal with my little boy.

That all being said...You CAN do this.  You WILL adjust.  I have learned I am so much stronger than I realized.  I can survive.  I can go through whatever I need to.  If I "go"? Then I suppose it will be my time.  Regardless, I wont give up.  I realize none of this is fair to any of us and sometimes I feel down when I think about it.  But I try to be optimistic .  Every time I have another birthday, that is another year I get to be with my son.

You can do it.  Be the little engine that could.  Keep telling yourself..."I think I can."  And you will.  Being scared is normal and I think it happens to all of us.  Hugs and prayers to you....... :grouphug;
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Leanne

I am more than a patient.  I am a mama, friend, wife, sister, and most of all a person.

41 years old, hemo since November 2011, trained for PD and tried numerous times.  PD did not work for me , it was a nightmare :(
Clara
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« Reply #18 on: October 17, 2012, 09:29:48 PM »

Thanks everyone for all of your support.  I met with the vascular surgeon today and had the vein mapping done.  My veins don't look real good but he wants to try the right arm (my dominant one) above the elbow.  He wants to connect the vein and artery first.  If it starts to grow and looks promising, he will then transpose the vein from under the arm up and across the bicep.  My vein is deep and only have one that looks good so I hope it works.

My surgery is scheduled for October 29th.  The doctor is young but very nice.  He said that I would be a good candidate for home dialysis. 

I am sure my husband will be supportive with home hemo.  He helps me if I want to insert my insulin pump cite or the CGM in an area that I can't reach well.  He is very precise...lol.   It is definitely all about communication.  I look at is a marital therapy.  We do have a spare bedroom that is pretty much never had anyone stay in it.  I plan to make that my dialysis center.  Now I just need a flat screen and lots of cable TV.  I may try nocturnal dialysis because I want to give my self the best chance to keep working and I think that would be easier on me.

I will keep you all updated.  I do appreciate everyone input.  It helped me with research and making a decision on which form to try first.  God bless y'all.

Christi
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