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Imrazor
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« on: March 01, 2017, 07:56:25 PM »

I'm not quite sure how to introduce myself here, but I'll try and explain my situation. My fiancee is 47 and recently started on dialysis. She spent many years at stage 3 renal disease, but her kidneys finally gave up the ghost last year. Dialysis has been a nightmare for both of us. She tried to start out on peritoneal dialysis, but after two or three operations they still couldn't get the access port to pass fluid. She then switched to hemodialysis with a "central venuous catheter" I believe it's called. They've been trying for many months to get a fistula in her left forearm to develop, but it's been very slow going. They've also had to replace the catheter three times already. Finally the doctors have said that her fistula is developed enough, so she's going to get some topical anesthetic prescribed and start with that next week.

To add to her misery, she has a very bad reaction to needles. They cause her to get nauseous or even pass out. She is not looking forward to starting on dialysis needles!

So far she's had in excess of six operations (we haven't been able to keep count) over the past year. Is this a typical experience for dialysis patients? (I also have some financial/insurance questions I'll post in the relevant subforum...)
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cassandra
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When all else fails run in circles, shout loudly

« Reply #1 on: March 02, 2017, 02:36:58 AM »

Welcome to the site Imrazor,

   :welcomesign;


I really wish a less complicated ride for you and your fiancee is just around the corner. And I really don't know many uncomplicated, smooth rides into or through D.

Keep strong, love, Cas
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I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
       still on waitinglist, still ok I think
Michael Murphy
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« Reply #2 on: March 06, 2017, 02:24:55 AM »

I am sorry to hear that your fiancée is having a difficult start.  There is bad news and good news about the needles the bad is they hurt if they are sticking a new area, the good news after being stuck in a spot eventually it stops hurting.  The other alternative if they let her use butto holes in her clinic no needle pain.  Like pierced ears they create a semi permanent entry. Into the fistula, 4 actually, so they rotate between pairs.  The needles they use after the button hole is created are called blunts.  The last priece of advise is not to look at the needles going in they look huge.
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Charlie B53
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« Reply #3 on: March 06, 2017, 05:21:55 AM »


Welcome to IHD.  I can well understand her fear of those huge needles.  Being needle-phobic myself since a kid that seemed to be sick for too long, and a Neighbor Lady that was an RN coming over morning and night, sticking me in the butt.  I hated it.  I hated it even more when my Mom learned how, then Mom was sticking me morning and night. I was very glad when that all ended, but it left mental scars that have lasted most of my life.  I used to be so bad the smallest injection at the Dr's office would have me passed out in the chair.  Blood draws?  FGI, nap time.  This may have been my biggest reason for opting for PD when I first needed Dialysis.  6 months later Dr hands me a Blood sugar kit and an insulin pens.  Congratulations, Diabetic now.  It wasn't easy, but I learned I could stick my finger, test my sugar, and although it was very difficult to, I have managed to make myself stick that neelde into my 'jelly roll' and give myself insulin.  I am so very Thankful those needles are so thin. I can barely feel it unless I haven't change it in a while and it starts getting dull.  When that happens I change the needle.  No problem.

After 3 1/2 years I screwed up somehow, got an infection and had to have my PD cath taken out and a Venous Perma Cath placed so I could immediately start Hemp in-clinic.  So far, so good. No Needles using this Perma Cath.  I have an appt tomorrow for vein mapping and a consult with the Surgeon Friday to figure out what we are going to do.  I may get to go back on PD but I know that I may someday again need to go back to Hemo.  Getting an access now may be the wisest choice.  But it scares me somewhat, knowing that I too will eventually have to face having those needles stuck into my arm.

I will have to deal with it when it happens.  I know I will turn my head and NOT look.  There is numbing medication that can be put on that site at home before coming in, giving it plenty of time to soak in and have a numbing effect.  I Pray that it works very well.

Hold her hand, just be there for her.  I can't blame her for the fears she will need to face and over come.

Take Care,

Charlie B53
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iolaire
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« Reply #4 on: March 06, 2017, 05:42:03 AM »

Welcome. I hope your fiancée gets settled and is able to settle into a routine that works.  Regarding what's "normal," its fair to say that either everything or nothing is normal.  We all react differently and have our own challenges with dialysis.  Reading around the forum you will find people with all kinds of special cases that they are trying to work through or have worked through.

A few suggestions some people use creams like Lidocaine to numb the area so she would not feel the poke as much, see https://devontexas.com/2012/11/11/dialysis-pain-and-lidocaine/ also another suggestion is to have her get setup watching TV during the stick so as to not have the visual of the huge needles going into the arm.  Personally I'm fine with the needles but I find my default needling stance is to stare off into space away from the needle as it goes in.
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Transplant July 2017 from out of state deceased donor, waited three weeks the creatine to fall into expected range, dialysis December 2013 - July 2017.

Well on dialysis I traveled a lot and posted about international trips in the Dialysis: Traveling Tips and Stories section.
LorinnPKD
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« Reply #5 on: March 06, 2017, 08:46:12 AM »

Welcome!

The needles... Here's what I do:  I look away!  I watch them clean the site, and then when it's time, I look in the other direction.  I don't look over until they've taped the needle up.  And then we do the same with the second needle.  And I also look away when they pull them out.  I pay loads of attention to everything else, but the sticking I just can't watch.

I tried the lidocaine (topical anesthetic) and some people swear by it but it didn't work for me.  So I use the freeze spray.  In some places, it needs to be specially prescribed (they didn't use it when I visited NY last fall, so I did just a regular stick without any painkiller... the reality was less painful than my imagination) but it's a small aerosol bottle of numbing, freezing spray.  They spray the site, your skin flashes white, and most of the time I barely feel the needle. It can cause a little damage to the top layer of the skin (sometimes quite noticeable on darker-skinned patients; I'm pretty pale and sometimes it turns me pink).  But it works for me, so I do it.

New fistulas take time to develop.  Mine was difficult and took a few months (the first six weeks were the toughest), but I never had a catheter so I just had to keep pressing on with it.  Just had to be patient and give it time.

You are a good partner to come here and show support.  Wishing good things ahead for you both.
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DayaraLee
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« Reply #6 on: March 06, 2017, 01:41:02 PM »

I'm sorry your fiancee has had such a rough go if it so far. It sounds like what could go wrong, has gone wrong.   ???  I hope that things begin to turn around and that she's able to find a strategy that works to cope with the needle sticks. This is a fantastic place to come for information and support - IHD is definitely a big check in the "pros" column, when there seems to be so many "cons" to this whole process. Welcome to site, Imrazor.
 :welcomesign;
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My husband is the one with CKD, but I'm who needs the coping strategies!
CKD Stage 3A, Diabetes Type II, Hypertensive, Stubborn...

"What is love? Love is the absence of judgment."  ~Dalai Lama
justagirl2325
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« Reply #7 on: March 06, 2017, 02:59:33 PM »

Welcome, I am also a caregiver to my husband (44) who has had a lot of complications as well.
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PrimeTimer
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« Reply #8 on: March 06, 2017, 09:54:19 PM »

 :welcomesign;  Welcome to ihd! I think the buttonhole method is the way to go. Since they use the same holes each time they spend less time looking for a new spot to stick (less anxiety). Once the needletracks toughen up like the tracks used for pierced earings, it seems to bring the pain factor down a notch. Some days the needles slide down my husband's buttonhole tracks as easy as butter, some days takes a couple more tries but overall, seems to be better than searching for a new site to stick each time. There are youtubes of the buttonhole method, I'd suggest you watch some of those. Good luck to you! After a few times I'm sure you will get the hang of it. Do whatever makes you comfortable with the process. That's the best way..
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Husband has ESRD with Type I Diabetes -Insulin Dependent.
I was his carepartner for home hemodialysis using Nxstage December 2013-July 2016.
He went back to doing in-center July 2016.
Imrazor
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« Reply #9 on: March 08, 2017, 03:07:27 PM »

Thanks to all for the replies. Good info about the buttonholes! I'll be sure to share that with my fiancee and her doctor and see if she can have that procedure done.

Today was her first day with the needles and it was a nightmare for her. She has said that she would rather die than go through the pain that it caused again. I believe she is quite serious about that, so I hope we can find out about the buttonhole procedure pronto.

She said the anesthetic cream did nothing for her. It was a lidocaine/prilocaine mixture (aka "EMLA") that *some* people say helps a lot, others not so much. The doctor is supposed to prescribe a different cream, but my fiancee has absolutely no faith in it.
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Simon Dog
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« Reply #10 on: March 08, 2017, 06:15:29 PM »

Quote
4 actually, so they rotate between pairs.
This varies by clinic and probably by patient.  I was advised to use two buttonholes, which I have been doing for 4 years - 6 months PD 6 months in center/sharp and 4 years home w /buttonholes.

Clinics generally don't use buttonholes since you have to enter at the same angle each time.    Home patients either to it themselves, or have a regular care partner making it more practical.   An in-center patient wanting buttonholes may need to learn to do it themselves (when I have to go in-center for a while, the staff has no problem letting me self-stick).

I feel a sting with buttonholes, and it is a much harder push than with the sharps.  But, in total, I prefer that technique.   But then, EMLA cream worked very well for me.

Did she put the cream on an hour before treatment, and protect it with saran wrap or similar?
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so I could immediately start Hemp in-clinic
A nice benefit, but only legal in a few states  :2thumbsup;
« Last Edit: March 08, 2017, 06:17:03 PM by Simon Dog » Logged
Imrazor
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« Reply #11 on: March 09, 2017, 08:36:34 AM »

Yes, she put the cream on about a hour ahead of time then wrapped it in plastic wrap to protect it. Despite that, she said it did nothing to help the pain. Her doctor is supposed to prescribe a different cream, but I don't know exactly what kind yet. We've also gone ahead and ordered some "freeze spray" from Amazon, but it won't arrive until next week.
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smartcookie
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« Reply #12 on: March 09, 2017, 08:58:33 AM »

Try some different spots when needling, too.  Sometimes you can hit a nerve and that will be very painful.  I have some patients who will not let you stick a certain spot in their fistula due to that. 
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I am a renal social worker.  I am happy to help answer questions, but please talk to your clinic social worker for specifics on your particular situation.
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