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CrystalLinn
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« on: February 21, 2017, 04:53:14 PM »

Hello everyone,

My name is Crystal and I am from Oregon. I've been occasionally stopping by this website over the past year as a guest. I finally decided to make an account because I am getting fistula in my wrist next week. I am hoping that I will not need to start dialysis until it is ready to be used. Does anyone have any pointers for the access or for starting dialysis?

-Crystal
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Hootie
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« Reply #1 on: February 21, 2017, 06:45:56 PM »

Welcome! Glad to have you here! You can learn so much from the veterans on this site. They are long time warriors. Make sure you give the fistula time to heal if you can. Some people's fistula matures faster than others. Some take 8-12 weeks, others longer. The team of the CVS and nephrologist make the determination of when its ready. It will be worth it for the health of your fistula long term. if you do HHD, run machine slower to protect the fistula. Its the gold standard and must be protected at all costs.

The start of dialysis makes everyone nervous with the setting up the machine, cannulating, monitoring patient and machine, and tear down. For me the needle sticking was the hardest as I was very needle phobic. Once you get past that,  the treatment becomes second nature. Relax and take the baby steps and before long you will be the expert. After six months, you will be teaching the nurse things about the machine! If you use NxStage...they have outstanding technical support!

Attitude is 90% of your success! Read, read and educate your self here and on the dialysis Facebook websites. Got to say this is the best site I have found on dialysis!
 
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Caregiver for wife with ESRD and type Type 1 diabetes (almost 50 years).  HHD with NxStage machine January 2015.
Transplanted  December 7, 2016
Hootie
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« Reply #2 on: February 21, 2017, 07:02:43 PM »

Here is something that I wrote a couple months ago that might be helpful:
I would like to to offer some tidbits of information that might help others just starting the dialysis and potential transplant journey:

Take charge of your circumstances....Doctors/nurses etc will help you along the way but nobody has as significant interest in your life as you and your caregiver does. We were very fortunate to have a great nephrologist, cardio vascular surgeon, HHD nurses, social worker, dietitian etc but we also educated ourselves so we could dialog with each of them and not have a one way discussion from them but with them. As my wife's caregiver I have spent literally hundreds and hundreds of hours researching every phase of chronic kidney disease and treatments. We decided over two years ago to do Home Hemo with Davita and the NxStage machine. We love the Davita people and the NxStage technical Support is outstanding. Each time we called NxStage it was "I can help you with that....lets start with..."

We embraced the treatment and doing everything thing the doctors, nurses and NxStage people asked along with the diet and fluids to keep the health as best we could. Yes, there were times that we debated with each of the disciplines. Our nephrologist got the the point that after a year and half if treatment and clinic visits, she would call me " Dr.XXX what do you feel is right?"....I am a retired sales guy and not a doctor. Discussions with the nurses about Davita protocols for treatment or phosphorous in diet with dietitian  happened often. Again dialog with all the subject matter experts.But in the end we were always 100% compliant....That is real important particularly with the transplant center calls and asks the type patient the candidate is and is she compliant.

We were determined that we were going to do whatever we needed to do for as long as needed in dialysis because we never knew if my wife would qualify for a transplant. When we were approved for transplantation then we worked even harder to make sure her health stayed good. That meant creation of two fistulas and 4-5 fistulagrams and one central venous catheter in two years. My role as caregiver was to keep her positive at all times. We took it one step at the time. Many days of doubt arose such is when she went into Afib when in hospital for a fistulagram and another time she  broke her leg walking down  the hall way to get a fistulagram done. Did I say Chronic Kidney Disease is dreadful? We all know it is.

Attitude of both patient and caregiver is probably the most important thing! When one is down the other helps! Occasionally, nothing on treatment day worked on a given day....so we did what the nurse always said....stop and give it a go the next day. We all have those days.

Transplant Journey....Same principles apply...be 100% compliant in all your treatments, drugs, and diet as best you can. That is very important to them as they want you successful after the transplant!
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Caregiver for wife with ESRD and type Type 1 diabetes (almost 50 years).  HHD with NxStage machine January 2015.
Transplanted  December 7, 2016
Michael Murphy
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« Reply #3 on: February 21, 2017, 08:09:32 PM »

You have already did what I think is most important you got a fistula.  I have also posted my starting story so I will give a quick run through.  About 6 years ago my doctor told me it was time to start dialysis,  I got my fistula but he kept telling mr about my labs.  He wanted me to start dialysis but I felt ok.  I kept ignoring him for two years, I think he thought I was going to wait till I had to be hospitalized but I was waiting for a symptom. When one came I called and told the doctor it was time.  I got two glorious years free from dialysis, the lesson is labs indicate you will end up on dialysis but not when, during this period I stopped eating processed food I think this is what allowed me two more year.  The last advice is to tour the facility where you are going to go to.  This is important because the fear of dialysis is far worse then the reality.  Remember when you went to kindergarten at 5 well that's what I was like on my way to my first session.  Oh yea bring a blanket, pillow, you may need a gel cushion the chairs are hard, if you don't like tv find some thing  to do for several hours. I bring a iPad with books,movies, games, and web access.
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LorinnPKD
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« Reply #4 on: February 21, 2017, 08:31:03 PM »

Hi Crystal,

Welcome to the forum!  I am sure you will find a lot of good information here.

I have had my fistula (right above the elbow) since May and I started hemo in July. 

The surgery was OK!  In my case, it was inpatient surgery with anesthesia in the morning and I went home that afternoon (had to have someone with me, per hospital rules).  They sent me home with painkillers but I never had to take any, just Tylenol for a couple of days, but that varies with each patient.  I was able to shower a few days after that.  Didn't have much of an appetite for the first couple of days but then things went back to normal.  You need to take it easy for a while and not have too much physical exertion.  No lifting, etc.

And you'll have permanent restrictions on what you can do with your fistula arm for as long as you have your fistula.  You can't do blood pressure cuffs or blood draws with that arm.  You can't sleep on that arm.  I used to sleep on my left side with my arm tucked under me, but with the fistula, those days are over.  I just propped a pillow under my left side for the first few days to help me get in the habit.

When you first get the fistula, you will be amazed at how it buzzes!  That's a good thing because that means it's strong!  With mine, I can actually feel vibrations in my arm when I rest it on a table.  I still check it several times a day to make sure it's buzzing along.

After your followup, you'll get the OK from your surgeon to start exercising the fistula. This means squeezing a little squeezy ball with your fistula hand.  They might give you one, or you can pick one up at a pharmacy or medical supply store.

And when it's time to use it for hemo, be patient.  One thing no one told me was that even though your fistula is working, it needs additional development time on the machine to expand for dialysis.  They'll start you out on smaller needles and a slower flow at first and then over a period of time you'll get to the right needle size and flow.  For me, there was a feeling of pressure in my arm whenever we went to a bigger needle size or flow rate.  The sensation felt kind of like someone gripping my arm very hard.  Sometimes I'd feel it early on in the session, sometimes it wouldn't come on until I had an hour left.  I'd take Tylenol and feel better within 20 minutes most of the time.  As for timing, I started in mid-July and by late October I was on my full-size needles with no pain. Not sure if others run about the same.

Another thing is that because the veins/arteries are so delicate at first, sticking you will be a little tricky.  Small movements may move the needle a little.  I was a famously difficult patient at my center (my veins, friends, not me personally) and we had a few false starts and a few infiltrations.  Don't lose hope -- just try to accept it as part of the process.  After my veins developed, things got so much easier and I'm a much easier stick.







« Last Edit: February 21, 2017, 08:39:29 PM by LorinnPKD » Logged
cassandra
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When all else fails run in circles, shout loudly

« Reply #5 on: February 22, 2017, 01:10:55 AM »

Welcome to the site Crystal

   :welcomesign;


Good luck with your surgery and take care, 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
SooMK
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« Reply #6 on: February 22, 2017, 05:24:24 AM »

Welcome Crystal!
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SooMK
Diagnosed FJHN/UKD 2009
Transplant April 2014
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« Reply #7 on: February 22, 2017, 05:39:15 AM »

Welcome.     Pay  attention, learn as much as you can, and figure out if home dialysis is for you.







sp mod Cas
« Last Edit: February 22, 2017, 03:44:16 PM by cassandra » Logged
Charlie B53
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« Reply #8 on: February 22, 2017, 05:40:54 AM »

Welcome CrystarlLinn!

While I cannot say anything about having an access put in as I recently had a Perma Cath stuck in me. I've been on PD for a little over 3 1/2 years but must have slipped and contaminated a connection during my PD set-up.  The resulting infection refused to die, re-occuring two more times.  Dr warned me this could happen.  Y;up, it did. So the PD cath came out and a Perma Cath went in and I am now coming into Clinic M-W-F.  Being needle-phobic using this cath is pretty neat.  NO STICKS. But Dr tells me I still need to think about having an access placed as this Perma Cath isn't permanent.

I am hoping to get back on PD but that won't be today.

Treatments aren't bad as long as I am very strict in my fluid intake.  The less I gain the less they have to take off.  Today barely taking off a total of 2 liters.  Good I think. I rarely drink anything mych.  My big cup of coffee every morning then it's an ice cube when ever I feel the need.  Which I at least every hour, if not sooner.

I am also pretty strict with my diet.  NO junk. Well, maybe a McDonalds McChicken, actually two, but on one bun.  And I rarely do that twice in a week.

You will soon see what works for you and stay with that and do fine.

Take Care,

Charlie B53
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iolaire
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« Reply #9 on: February 22, 2017, 06:03:43 AM »

Welcome, I'm glad your doctor is helping you be proactive about the fistula.  I hope that your doctor is also prompting you to get listed on the transplant list (if that's an option for you), you can be listed and accrue waiting time when your glomerular filtration rate (GFR) drops to 20 mL/min or lower.  If you end up waiting for a cadaver transplant it might take a long time (I'm at 5.5 years with no complexity to my transplant, no antibodies etc..).
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I travel with my wife as a hobby and am on Dialysis, recent trips include Brussels.  We return to South Africa (Cape Town) in November 2016. I've also visited a few other US DaVita centers and have had good experiences.

I still owe a write-up for Montreal for October 2016.
DayaraLee
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« Reply #10 on: February 22, 2017, 01:19:13 PM »

Good luck with your surgery, Crystal! Please let us know how everything goes. And welcome!!
 :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
CrystalLinn
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« Reply #11 on: February 22, 2017, 01:35:18 PM »

Thank you for the great information everyone! I'm feeling a little less nervous about the fistula already. I keep thinking about the surgeon saying it has an 80% chance of success. Of course, I turn that into "it has a 20% chance of failure!" Knowing that there are things that I can do to help strengthen the fistula makes things feel a lot less dicey though! I'm not sure if it will help or not, but I might pick up a stress ball and use it leading up to the surgery just in case. If nothing else, it should help get me in the habit of using it for when the fistula heals enough. I'll be sure to post an update after the surgery! :thumbup;
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Xplantdad
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Health is not valued till sickness comes. T.Fuller

« Reply #12 on: February 22, 2017, 07:46:16 PM »

Hi CrystalLinn...and welcome. I echo what Hootie said above. Be involved and educate yourself about all things dealing with kidney/dialysis. The folks here are amazing with their knowledge...and they share their life experiences so others may learn from them!

This quote from Hootie really hits home with us, too as there are days when nothing goes right, "Attitude of both patient and caregiver is probably the most important thing! When one is down the other helps! Occasionally, nothing on treatment day worked on a given day....so we did what the nurse always said....stop and give it a go the next day. We all have those days."  :thumbup;
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My name is Bruce and I am the caregiver for my daughter Holly who is 26 years old and received her kidney transplant on December 22, 2016 :)
Holly's Facebook Kidney  page: https://www.facebook.com/HollysLivingKidneyDonor/

Holly had a heart transplant at the age of 5 1/2 months in 1990. Heart is still doing GREAT!  :thumbup;
Holly was on hemodialysis for 2.5 years-We did NXStage home hemo from January 2016 to December 22, 2016
Holly's best Christmas ever occurred on December 22, 2016 when a compassionate family in their time of grief gave Holly the ultimate gift...a kidney!
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