I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: KarenInWA on April 20, 2011, 09:44:12 PM
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Hello,
Well, my time has come. My gfr is now at 6, and I will be starting D via my new temporary neck access this Friday. My fistula was placed late Monday night, so it needs time to mature. Strangely enough, I do not have any uremic symptoms, except for fatigue. I am going into this with as positive of a mind as I can muster, because I refuse to let this get me down. I have learned, through the amazing people on this site, the importance of being one's own advocate, and I'm not afraid to do that! My plan is to do in-center until I find out what is going on with my friend who got tested to be my donor. If she is able to be my donor, or able to donate on my behalf through a paired exchange, then I will stay in-center until transplant time. If she is not able to donate, I will look into doing Nxstage.
Any advice on how to make that fistula mature quicker will be graciously accepted!
KarenInWA
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Ask a staffer like a nurse, or social worker for something such as a soft ball. THere is a little hand held ball, its a little hard to describe via the internet, well you can use it to exercise your hand, which in turn exercies your fistula and helps it to get bigger in size. The thing they give people here, is something they can squeeze.
Lisa
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a stress ball will work. The nurses actually gave me one that's shaped like a kidney.. I think I have a picture of it on facebook, Karen.. I'll find it and tag you..
The more you exercise the arm and get the blood flowing through the vessels, the easier it will be to find them, and get the needles in
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Best wishes. I discovered that the reality was nowhere as bad as the anticipation.
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Squeeze, squeeze, squeeze. Use those soft stress balls. I did it at least 1000 a day at different intervals. Good luck on Friday and of course keep us posted on your possible donor.
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as those above had said a squeezy ball works,but they will usually wait the standard 4-6 weeks
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Blokey didn't have a squeezy-stress ball, but he does do a lot of driving and that seemed to do the trick! Hope it all goes well for you on Friday.
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No suggestions, just wanted to wish you the best of luck. :grouphug; :grouphug;
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Good luck, Karen. I'm hoping that all goes smoothly and you find that you have more energy and actually start feeling better.
Don't let them take off too much and make you crash. :Kit n Stik;
If you start feeling light-headed or sick, TELL THEM and make them back off on the fluid removal.
Will be thinking of you.
Aleta
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:grouphug; I hope all goes well. On the positive side, you are going into this well informed. I will be thinking of you tomorrow evening.
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Good luck sweetie. Keep us updated on how you do Friday.
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DON'T let them use your fistula until it is well developed - at least 4 -6 weeks!! Stress balls work well. Hubby wore out 2!!
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I hope your experince with D is a positive well and goes as well as possible. Will be thinking positive thoughts tomorrow and through the weekend for you.
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dumb question, but have you felt or listened to your fistula yet? It should have a nice buzz going on by now
Let us know how things go on Friday
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usually the dialysis center will have something for you to use to exercise you fistula, my center waited for the ok from my surgeon as to when they could use my fistula.
For your first dialysis treatment just try to relax it seems really scary but its not, watch tv, sleep, read. And the most important ask alot of questions it will help you understand your treatments better.
:grouphug; :grouphug;
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Karen, I can send a soft squeeze ball, egg, penguine, foot, brain, but not my squeeze kidney from NKF if you like ASAP. The egg is the smallest, but it's golden (in color that is :rofl; )
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dumb question, but have you felt or listened to your fistula yet? It should have a nice buzz going on by now
/quote]
Not a dumb question at all....always make sure your fistula has a nice "thrill" buzz to it
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Hi Everyone,
Thank you all for your responses! I do have a kidney stress ball that I found, it's from NW Kidney Centers. I will use that (wanted to wait a few days first, but I think it's time to start building that thing up.). I only took my pain meds for one day, Tuesday (Tylenol w/codeine). The temp access site doesn't hurt, but feels weird.
I felt my "buzz" for the first time the very next day when sitting at the dr's office. I had my elbow on the wooden chair arm and I felt it. The fistula is at my mid arm, so I feel the buzz anytime I put pressure on my elbow. I don't feel it when I put my fingers on the bandage though. That should be okay, right? My neph felt it through the sleeve of my sweatshirt on Tuesday, but then again, he knows what to look for.
My sister has offered to take me in for my first D treatment, which I am thankful for. I will let you all know how it goes.
Thank you again. your support is priceless!
KarenInWA
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Thinking of you today. :cuddle;
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I am thinking of you as well. :grouphug;
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me too :2thumbsup;
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yep.. will be waiting to hear how things went..
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Hoping it went well today, or as we speak.
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yeah, Chris.. I think you're right.. it's as we speak..
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I know what time she said she has her treatment scheaduled, butI forgot how the time zone difference is, so figured there was a 2 hour difference and she might be close to being done now in an hour.
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Yes, I'm thinking that Karen should be done and ready (or not) to post soon! :pray;
Hoping it went well. :cuddle;
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Waiting for some good news from Karen....... :pray; :pray;
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Greetings from the night owl!
I have been up since 4am-ish, and am about to hit the sack, but I thought I'd update all of you on my first run. I worked an 8-hour day today, met my sister who drove me to D, did all the paperwork, got hooked up for a 3-hr run, *SURVIVED* it, and feel okay considering. The staff at my local clinic is awesome, as are the few patients I met today. They allow us to bring food, so I have learned that I need to do that (I was starving as soon as I was hooked up - my appetite has been elusive lately, but I did eat lunch today). A friend picked me up and we went out to dinner.
I think what was hardest for me was seeing my neighbor, who is a special young girl who can hear but cannot talk. She has beautiful, curious eyes, a sweet disposition, and the warmest smile. I don't know her story yet, but she kept making eye contact with me, and gave me the thumbs up as she left. I kind of lost it after that, and I am thankful that the nurses/staff let me have my moment in private. I can tell that this sweet girl has a lot to teach me.
KarenInWA
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glad to hear you SURVIVED :thumbup;
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I am so glad all worked out for you last night :2thumbsup;
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I have been thinking of you... glad it went OK!!!
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Day one is done :) And your young girl story brought me 'sweet' tears.. Im sure you'll find a way to communicate, and i do believe theres much to be learned from her. If you could already read her eyes, your going to do just fine ;) Blessings to you and all whos path you cross.. :pray;
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:flower; :grouphug; :flower; :grouphug;
You are going to be just fine, Karen. And I bet you start feeling the good results of dialysis soon. :)
Aleta
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:waving; How did it go?
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I really hope things continue to go well for you at dialysis in the future.
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Oh Karen, Im so glad they allow you to bring something to eat. Alot of centers do not allow it, but I believe they are coming around more. Your neighbors little girl, really tugged at my heart, when you said she could hear but couldnt speak! People with those handicaps are very intelligent. They use their senses in ways that healthy people take for granted.
Im also glad to hear that you found it not to be so bad. Alot of people DREAD it and think it is the end of the world, but once you get use to it, it will become routine.
Soon you'll be doing NxStage at home! I know "One Day at A Time". Glad it went very well for you! Just dont let them drain to much off like Aleta said. Not they would purposely do that but sometimes they just don't realize it unless you Tell them.
Good Luck to you in future D's.
lmunchkin :flower;
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I am happy Karen, to find out you made it thru with no catastrophies.
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I'm very happy things went relatively well. :thumbup;
That was a really toughing story about the girl - thank you for sharing that with us.
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I am so glad your first Dialysis went well.
Best wishes from Kristina. :grouphug;
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We're with you, Karen! :cuddle; I was int he same boat, just fatigue and no other symptoms. Even though my GFR was hovering between 6 and 7 for the better part of 2008, my doctor didn't want me to start dialysis too early, but didn't want me to be sick either. Sounds like your doctor is very much like mine was.
I was till urinating quite a bit (quantity, not quality), but nonetheless I was getting rid of fluid. I hope you haven't waited too long and I hope the transition to dialysis is smooth. Keep us informed. :grouphug;
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Just caught up with this thread.
I was never given a squeeze ball - that sucked, but then again I didn't have to use my fistula for two years after it was placed so it was VERY matur by then.. but yes the ball is important to use.
Have you had another session yet? Surely you would have had one on Monday after Friday's?
Haveyou been given a choice of M/W/F or T/T/S sessions?
That little girl does sound special and very distressing at the same time. I don't blam eyou for losing it when she left. Sometimes we need that sort of perspective when we feel crap about our own situations. I'm sure the way she copes with her lot in life is something we can all take inspiration from. It's like a younger (early 20's) girl who was a patient in my unit - she was confined to a wheelchair due to, I think, MS or muscular dystrophy or something like that and then kidney failure.. but her attitude I took SO much from. She wouldn't let any of it get her down. She just took it all in her stride. Later she was disgnosed with hodgkins lymphoma(sp?) in her neck, and well... same attitude.. all she was doing was planning on getting her license and chasing boys! I always think of her when I feel down about my lot. This young girl sounds like your version.
I hope the next sessions are good too!!!
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I do my D on M, W, F in the evenings. First run was 3 hrs, 2nd one was 3.5, then I will be 4 hrs. I had to have them stop the fluid pull last night due to almost cramping - thankfully it didn't go to a full bore cramp! Their goal is to pull 1 liter off. First time they did 700ml, 2nd time was under 900ml.
I do get really cold, and am glad I brought 2 blankets with me this 2nd time. I also have circulation problems in my hands, and am losing blood in the fingers of my left hand after D. I will bring that up to the vascular surgeon when I see her for follow up on Thursday. My pinkie finger tip was purple last night. Yikes!
KarenInWA
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Karen, so glad things are going pretty good for you. My husband has his fistula on his lower right arm, and he complains of numbness in his hands and fingers. Sometimes I will take his hand while dialysising and rub them for him cause they would be cold. His vascular surg. said he has not much blood flow to it because of his fistula.
You still taking your own food?
lmunchkin
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Had my 3rd D session today, and it went well! They pulled off just under 2 liters of fluid, no cramping, I made some new friends and had some very good conversation! Not bad for D, eh?
KarenInWA
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Not bad at all! :thumbup;
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You're going well, Karen.
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:2thumbsup;
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So glad your adapting well :clap; I think hubby did as well, and the 'friend' making really helps a lot!! We enjoyed our time at the center! Happy to be home now, but still miss those folks there. All the best for continued success :2thumbsup;
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Karen :bestwishes;
Your off to a good start. Keep up a good attitude and try to learn as much as possible to help manage your own D.
The girl next to me when I started was 20, beautiful and had a great smile. She also had lupus and was blind. Nevertheless, she took her own needles out. I am at a different unit now but she taught me that ones own personal situation sometimes pales when compared to others.
At my present unit, a man who has become a good friend had lost toes and was in and out of hospital until he lost his leg. I always make a point to talk to him. He is a fighter and ALWAYS asks about me. It is very hard to feel sorry for myself and my complaints when I know what he goes through.
PROTECT YOU FISTULA!
Cheers
Bill
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For some reason I thought you were on a M W F scheadule and not a T, Thu, Sat scheadule. Glad your not having problems with D Karen.
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For some reason I thought you were on a M W F scheadule and not a T, Thu, Sat scheadule. Glad your not having problems with D Karen.
Chris, I am on a M, W, F schedule. I decided I wanted my weekends free.
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For some reason I thought you were on a M W F scheadule and not a T, Thu, Sat scheadule. Glad your not having problems with D Karen.
Chris, I am on a M, W, F schedule. I decided I wanted my weekends free.
Whoops, went to look at the time it was posted and even though it said it was posted today, my time after 1 am, It was on Wednesday your time. Sorry
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So good to read your first D session went well. I had to read the whole thread to catch up on your news. Stay well!