I Hate Dialysis Message Board
Introduction => Introduce Yourself => Topic started by: BeachLover on March 22, 2009, 10:50:13 AM
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I am getting my fistula in April. I still can't believe all this has happened to me. I am scared and wondering how I will ever begin to cope. Doctor has been telling me to get fistula for almost a year. It's time. I am wondering if my arm will become weak after the fistula and when dialysis begins.
The more I read the more frightened I become. I guess I am not brave like most of you. I am worried that dialysis will make me feel sick and I am really scared that the needles will be very painful. I have diabetic retinopathy so reading is almost impossible.I wonder what I will do for the 4 or 5 hours I need to be there.
I know you guys have heard this all before. Sorry.
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:welcomesign; to a wonderful group of people. You are where we all have been or still are. Lots of shoulders to lean on. You have the vision problems I also do. I flip channels a lot at dialysis. Unable to use my arm with fistula so no crafts. Other people will have many ideas I'm sure.
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:welcomesign;
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Hi Beachlover. I just joined this site yesterday. I did five years of dialysis and had a kidney transplant ten years ago. My new kidney is failing so I'm preparing to go back on dialysis again in the near future. And even though I know what it's like, the prospect is STILL scary. It's okay to feel scared and say, "Why me?!" I am so glad I found this web site as I think it's AWESOME that there are other people here to commiserate with. The truth is, dialysis is hard but you can get through it.
When I was on dialysis I would watch TV mostly. Most places give you your own little TV. I tried to sleep when I could because that made it go faster. Sometimes I brought my walkman and would listen to music.
Welcome to the group!
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Hey... I know it's really, really scary but you'll make it through - some days will be harder than others. The nurses always made fun of me because of all the things I brought to the clinic:
Ipod (for when I want to listen to music)
Ipod video (to watch tv shows)
Laptop (finally got one last month! to watch movies or surf the web - my clinics wifi didn't work.. so movies it was).
portable DVD player (before I had the laptop)
Cell phone (all else fails, call a friend!)
and of course, the center had our own little tv for each of us but there wasn't much on at the time I was there. Though I have discovered a love for wife swap, extreme makeover: home edition and my big redneck wedding since then. If you're stir crazy though... home dialysis is much easier to cope with. Good luck!
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:welcomesign; Beachlover---I love your name! You are in good company here. I think there are days we are all scared and worried about what tomorrow will bring. You will find great support here and hopefully that will make things a little better for you. I came here when I found out I had kidney disease. I thought I had just been handed a death sentence---but the members here gave me information, support and most of all, hope. They have helped me prepare for the future with great knowledge and strong shoulders for me to lean on. And I have made great friends here, also. Looking forward to hearing more from you. Glad you joined us :grouphug;
paris,Moderator
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Welcome BeachLover!!! I am a BeachLover too... specially when it's full of young lovlies... but I digress !! :rofl;
Please do not be scared! The fact that so many of us live with this every day - and live quite well - is proof it is something you CAN deal with. I want to express to you that I am what they call down here a "wuss" - translation: "sooky la la" and "big softie" :) I just never look at the needles and when they stick 'em in I either talk to the nurse or think about aforementioned lovelies :) Some people watch and enjoy it.. and more power to them - but i'm not one of them. The thing that I noticed after the first few times, and now after nearly 3 years, the fistula and arm area toughens up and honestly a lot of the time I don't feel it (I only used locals once).. and the odd time you do feel it it's a sharpish pain for a second and that's it. Much like getting a flu shot or something. It's really not an issue in that respect.
Does your arm feel weaker after the fistula? I would say no, not really BUT you tend to use it much less because you really should not be using it to lift heavy things etc to put stress on the fistula area (which is why they put it in your non dominant arm to start with). I find that my arm feels normal enough - no issues there.
Will Dialysis make you feel sick? Well it's actually there to make you feel BETTER!! Now, don't get me wrong.. there ARE times when you come off and need a nap. I know I do. And sometimes your BP may go low and you feel a bit faint.. but once you're stable with a dry weight and all that those situations should be rare. They are for me anyway.
Of course I'm talking about hemo. If you're getting a fistula it sounds like that's the way you're going. PD is different but I've never done that so can't comment.
Have we heard it all before? Nah.. not possible. Everyone is different.. and that doesn't mean your fears and concerns aren't important!! I just want to try and reassure you that it's not so much about being brave (well OK, that first session was!!) - it's something, unfortunately, you will need in the next little while. You might find you cope a lot better than you think.
What is it exactly that scares you the more you read? I think my biggest thing was that no matter how much I read or saw I really had no concept of exactly what went on - the procedure, how it would feel (surprisingly the actual process of dialysis feels like.. well.. for me.. nothing. The needles don't hurt once in, and you don't really feel the blood coming and going or anything like that), and what really goes on. After my first session, which was easily the most nerve-wracking it was much easier for me. I knew what to expect and it wasn't nearly as bad as I was expecting.. so I understand being scared!!
Trust me if I can deal with it and manage to live OK with it - anyone can!!!
So welcome to IHD - I hope we can help make things a little easier for you!!! That's what we're here for!!!
:welcomesign;
Now, where's that beach and those lovelies..... :rofl;
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Hi BeachLover and welcome.
So tell me, which beach is it that you love and...
:shy;
...do you love it dressed in a speedo or in a bikini?
(pics for Richard if it's in a bikini)
:waving;
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Thanks to all of you and your kind welcome. I feel a bit better already!
I am from a beachtown in Florida but have always lived near the ocean, so it's a way of life for me. I'm female but I think my sunbathing days may be ovah. LOL Darn. I do love that tan.
I was dianosed with diabetes 5 years ago when I developed the retinopathy. Thanks to a great doctor, many laser treatments and surgery, my vision in right eye remains just well enough for limited driving. But reading is tough after a cataract surgery. Left eye is kind of gone, but I do have right eye with fair vision.
Didn't realize Ihad kidney probs. until after bypass surger (triple in 05. Then a year later my kidney's were at 30%. Due to another good doctor, we have staved off dialysis until now. I am presently at 3.5 and closing in. I thought if I followed every direction and took every medicine I could outlive the need for dialysis, but even with strict blood glucose control it crept up on me anyway. Nasty nasty disease.So here I am wondering about the rest of my life. I am still only in mid 60's but the last few years have taken their toll. Who would ever believe one could stand so much?
My husband is willing to e me a kidney but he is 69 and just had heart surgery. I doubt he would be eligible. My kids have not stepped up and neither has my sister. A little disappointing, but what can you do? Perhaps it will take some time.
I feel very alone so it is good to find you all. I already feel less afraid. It's amazing what you can do when it stares you in the face.
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:welcomesign; to a wonderful group of people. You are where we all have been or still are. Lots of shoulders to lean on. You have the vision problems I also do. I flip channels a lot at dialysis. Unable to use my arm with fistula so no crafts. Other people will have many ideas I'm sure.
I am wondering why you can't use the arm with the fistula? They are planning to put mine in the upper am and that has me worried. Won't that make my whole shoulder weak? I think the lower arm would be better. Doctor says its easier on the upper arm right above the elbow because there are 2 arteries to work with there.
Do you mean you can't use the arm just during dialysis or all the time?
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Beach Lover - when we say you can't use the arm there are two slightly different contexts to this statement.
During hemo dialysis you shouldn't move the arm the fistula (and thus needles) are in. If you have an upper arm fistula this is easier because you can move below the elbow which means you could probably hold a book or something like that while dialysising. I have the fistula at the wrist/lower arm, so I keep it imobile during treatments (it seems impossible to do over 3-5 hours, but trust me you get used to it pretty quick - the alternative such as a blown needle is not worth it!!!)
The other aspect is that it is ideal to put as little weight on a fistula arm as possible. That doesn't mean you can't use it in day to day life but you shouldn't wear heavy/tight clothing on it (not an issue in Florida I would think!) and bear heavy weights with it. It shouldn't make your shoulder weak though I wouldn't think.
I think you should ask again about fistula placement. I have always been under the understanding that doing it in the lower arm is better because if it fails there they can move to the upper arm (vice-versa not possible if upper arm fails) so you are effectively losing one possible point for an access. Others may differ on that opinion though.
About your sister and kids not stepping forward. It could well be that the reality of kidney failure and dialysis probably has not hit them in terms of the affect and changes it will demand of you in your life. My own sister said and did nothing until I had actually been on hemo for a year or so and she saw just what that meant for me and I think that is what helped push her along (plus my brother stepped up to be tested, so she probably felt a bit of guilt or obligation to do so though I never once asked her about it since we were advisded here to NOT push family members on the issue and they needed to decide of their free will to do so). So it may be that they just don't see you as being sick enough or it being an issue at this point to contemplate donation. They may "come around" in time. Obviously it's a big decision and choice for anyone to make.
Hang in there and continue to love that beach!!!
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:welcomesign; BeachLover. So glad you joined us. We are a wonderful group and we hope to hear more from you. :cuddle;
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First, Beachlover do you know there are low vision products that may help you and low vision technology? There is software for the computer, hand held video magnifyers, and then there is daily life products. I can post links to low vision product websites so you can look at various products online or order a catalog.
As far as the arm goes, I had my fistual in the lower arm and the reason I couldn't move it was because the alarms would go off and fear of the needles moving where they shouldn't. Then I had an upper arm graft and during dialysis I had more movement in my arm to do things.
I was scarred at first and hated going there, but over time it will get better. I won't say it will go away because some techs just are not good at poking yah.
:welcomesign;
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Beachlover, boy did your post hit nerves for me! I too will have a fistala in April and I’m down right scared to death about starting dialysis. I’ve been on this site a few weeks now and I’m asking such ridiculous questions. I understand where you are coming from. So start asking away and maybe people won’t get so tired of me.
I had diabetic retinopathy. I woke up on New Years Day 2005 to a real surprise. I couldn’t see the new year. Now, after lots of laser treatments, my vision is mostly back. I do have to wear glasses now, for the first time ever. Yes, I’m too vain for glasses.
You are such a youngster. I’m 68 years old. I was still going through depressions about getting old when I learned I’d have to start dialysis.
I live near Galveston which is not so nice, but a beach is a beach, huh?
I was worried about such stupid things like “what about the scar” and “how can I sit still for 4 hours” and “will they let me have a laptop or an ipod”. They people in here actually answer those questions for you. I’ve never asked how much it hurts. I’m afraid to.
To Richard: I’m so glad to hear you are a Wuzz… Makes me feel better! If they do this in my left arm I’m sure I won’t move it the entire 3 ½ hour session. One problem is, even when they draw my blood, I say dirty words when they stick me.
Aharris2, I’m a 68 year old male. Do you think Richard would like a picture of me in a speedo? Yuk, what a disgusting thought!
Beachlover, keep in touch! If you learn something new, let me know.
Dan
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Forgot to mention, ask for a medication to help you clam down before dialysis starts. I was given Xanax for a little bit, but stopped taking it shortly after starting, but I was use to small needles and being poked. The larger needles just produce more fear and where it went just didn't set right at first. I didn't drive at first and if you look into it some insurances will cover transportation to dialysis.
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Yes guys I think maybe taking something to calm you down might help a little - specially with the initial sessions when it's all new and scary and stuff. After a bit I am confident you will be old pros and it totally won't worry you! :)
LOL @ saying dirty words when you're stuck... Sometimes when they use a new spot which can hurt a bit when the needle goes in (not relevant if you do buttonhole) I pull all kinds of faces(which makes them laugh!) or I make a joke about how much I love them. All in good humour. The pain is quickly gone and it's not even that bad. Half the time I make faces just to make them laugh (you know, humour really IS the best medicine in some cases!).
Sorry not taking pictures of ANY men in speedos (me included UGH!!) that's just really NOT my thing!!! hehehehee :)
Dan don't worry about asking questions!!! They're not stupid at all EVERYONE is new at one point or another, and has fears and questions.. and your questions might help another person down the track when the search - so it's all good. As the old saying goes - there are no stupid questions - just stupid answers!!! (most of those are mine, by the way !! :rofl;)
hmm 3.5 hours? I *dream* for a 3.5 hour session!!! I tried bribing the nurses with chocolate.. but no go amigo!! hehehe
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Welcome Beachlover. Keep reading. You'll become more and more confident. I was in your shoes when I joined. I joined IHD in Sept of 2007 and I was scheduled for my first fistula later that month. Just read and read some more. Ask questions if you can't find the answer already posted. I become so much more knowlegeable with this site and my nephrologist was very impressed with my involvement in my own care. Also, when it came time to get on "the list" I was much more prepaired and knew what to expect.
Are you on "the list" already? Will that come after you get your fistula? Have you had the vein mapping yet? What arm and where are they putting the fistula?
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All of you new people...no one here will ever get tired of any questions, only NOT asking would be bad!
Ask away.
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When I was prepairing for possible dialysis I signed up for Netflix and made sure I had unlimited on-line movies, as well as unlimited monthly movies by mail. I also got a subscription to a couple of magazines, purchased a nice fleece blanket (neon green) and a comfy neck pillow. I already owned a laptop and a headset so I was ready. I figured once I got used to dialysis I would start bringing books and/or books on tape and such. I was terrified that I would not find a donor in time. My fistula was placed successfully 10/31/07. My doctor thought for sure I'd be on dialysis by March 2008, then July, then Aug, etc., but I kept plugging along. Finally, in late Sept 2008 they accepted my sister-in-law as a living donor and I was saved from the dialysis chair (similar to someone being pardoned and avoiding the electric chair).
Research and ask a lot of questions. The experience and knowledge on this site alone is enough to fill books and books. And the best part is it's free hands-on experiences. You won't get answers like this from doctors or nurses. Take advantage of the gift Epoman put in place for you - all of us - and learn as much as you can. Your eyes will be wide open when you have to start dialysis. That is if you don't transplant FIRST!!! :cuddle;
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Welcome Beachlover, good to have you aboard.
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:welcomesign; I think that anyone who isn't nervous/scared, whatever you want to call it, when first faced with all this CKD mess might just be in a coma or something. However, like many things in life, the will to live and to feel better, combined with necessity can give us tremendous courage and strength. The most frightening things are often those we don't yet understand or know much about so learn and ask questions and your inner strength will show up. This is the best place for support, understanding and information so that's a great start. We really know this path well and are happy to point out some of the hidden traps as well as offer reassurance about the parts that appear impossible to navigate. :cuddle;
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:waving; Beachlover
Glad you found us. Hope to see you post often.
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I think you have come to a good place, especially with your questions. I can certainly relate to being scared! I am soon to be 43 years old and I started dialysis in January. I chose home dialysis (peritoneal dialysis) because it would allow me to continue to home school our two boys and because there are no needles involved! Is PD an option for you?
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:welcomesign;
I think that everyone here as been where you are. Hang in there. Knowledge is power and there is an abundance of knowledge on this forum. Great support here. :grouphug;
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WoW! You are a nice group of people, It's so reassurrng to keep reading. I have been wondering about something. How do you use thwe restroom while on dialysis? I have to go often. Please don't say bedpan. I hope not but I can't think of any other way.
About my husband. He is 5 years older than I am. Does that mean he is an unacceptable donor? He had heart surgery last summer. He is still willing but I wonder if he would be approved.
I am going to get tested to have my name on the list. My nepro is not sure I would be accepted because of my heart disease. But he is going to send me to Atlanta where they are more accepting and have taken people with health issues. One thing he told me is just because my husband could give me a kidney doesn;t mean I would necessarily be approved. I would still have to pass the health exam for them to do the operation.
So anyway I asked the doc when he thought I would need to start dialysis and he said we would put it off as long as possible. I am still feeling fairly well. Only a bit nauseaus only recently and only a few days. No vomiting. No fluid retention.
How would I know I was definitely getting worse? he said something about breathing problems. I have to admit that I still smoke just a bit. I have been trying to knock it off but maybe 3 or 4 a day now. I am afraid to tell any doctor. I know I have to quit before being tested for transplant. It's in the blood and they won't accept you. It's just that I am a nervous wreck and stopping completely is a real tough one. I know, I know. I must. Does anyone smoke at all? I am very ashamed to admit it. I have heard that if you smoke anytime after they start you on dialysis, you could have a heart attack. Good grief! Am I all alone here?
One more thing. How do you sit for 5 hours straight while in dialysis? My legs getr cramped and I have to move around. Are there any breaks at all?
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A couple of things for you BeachLover - from my perspective and experience anyway - others may vary:
With regards to going to the toilet - what I have (ahem) seen done is a mix of pans if needed or the preferred method... well the preferred method is that you don't go at all - so go before you start and/or hold on. Also note that in most cases folks who start dialysis will tend to dramatically decrease their output so going is less of an issue when on Dialysis for most of us (phew). However, most of the time they disconnect you from the machine (a fairly lengthy process) and you go off do your thing, then reconnect back up. There's an older gentleman at my unit who does this every second or so session.
Do you get breaks?? LOL.. No breaks!! I'm still waiting for my holiday from dialysis let alone getting 10 minutes off during the sessiion! :) Anyway you're sitting or lying there - that's one long break most people would think!! :)
How do you sit for 5 hours? First of all not everyone does 5 hour sessions. In fact in the US it is more common than not to do around 3, though some do 3.5 or 4. It all depends on factors like your labs, your weight and stuff like that. One thing to remember is that the more you get the better it is for you since it's replacing an activity that normally goes on 24/7. That's what I remind myself when I see people finish an hour before me and my backside is sore!! Now how do you sit? Well the chairs do recline to a variety of settings (depending on the sort of chair it is) so you can lie back more if that's what you prefer. I tend to sit up and watch my laptop but that's just me. I have bunches of pillows to put behind my back and behind my.. behind!! to make it more comfortable.. and of course the trusty blanket. I've seen others bring an entire quiilt ("comforter"?) in and cover themsemselves with that like they're in bed. It's not easy to do but you get used to it because... well.. you need to.
I know I only answerred a few of your questions... hope it helped a little bit.
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Hi beachlover. I love your name as well. The main reason I don't want a transplant is because I will be restricted as to the amount of time I spend in the sun. I just started dialysis a couple of weeks ago and trust me when I say that what you are imagining is 10 times scarier than the actual process. The sitting is the biggest problem. The needles are fine and after your first day you will surprised at what all the fuss is about.
I am having teething problems with dry weight and a few other issues but all in all I am pretty fine. I am there 8 hours at the moment, four days as I am doing training for home dialysis. As for the toilet issue. They will take you off if you need to go to the bathroom. Strangely enough though, like you I was going all the time but I manage to make it through the five hours without having to go. RichardMel is gorgeous and I love him dearly :cuddle; but don't listen to him about "Hanging on". Hanging on can cause a urinary tract infection and that's something you don't want. The toilet issue was the thing I was worried about most before I started dialysis but I go just before I go on and go just after I come off and I am fine with that. I never thought I would be able to do that. Your body just seems to adjust to the new conditions. As for the cramping, once you start you will find that will ease up as well. You will find your body will adjust just find to the new restrictions of constriction.
You are getting some good advice as to how to spend your time while on dialysis. I am training while I am doing it so I don't have much time for anything else and then I am going to be nocturnal at home so hopefully I will sleep through it. As you are smoking...which I think you will naturally look at giving up when you start your dialysis...get a blood pressure machine and keep and eye on your blood pressure. I had no fluid retention before I started or any shortness of breath but I was starting to feel nauseated all the time. A few days before I started dialysis I started feeling well again. Keep in mind that if you get a virus or the flu or another illness of some sort your creatinine and urea will rise but it may only be temporary. I am seeing my neph today because the nurses at my clinic feel I may have been started on dialysis prematurely. They think the rise in my urea was caused due to a virus and my own kidneys have kicked back in. That is really unusual but try not to get your bloods done if you have another type of sickness as that will put up your creatinine and urea. Anyhow, all the best with your journey. You are in very good hands here. xx
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Welcome to our community! Sorry to be a bit late, but I have been having all kinds of connection problems. When I saw your name, I thought you might have been from my neck of the woods - the Caribbean. But I see you are my neighbour. I am so glad that you joined us. I found IHD just before I had to start dialysis, and I am eternally grateful for the help and preparation that I got from it. You are really in good hands here. This is now more than just a website; it is a family :grouphug; and you get to be part of this very special group of people. Continue to take advantage of all this site has to offer. Keep reading and keep posting.
Bajanne, Moderator
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we have small individual televisions -- you could move it close to your face and bring ear phones -
reading is not too easy with one arm in the cuff and the other one with needles -
we can eat at our unit -- or, I can eat -
it is a long, boring four hours -
listen to music or maybe books on audio -
talk on the phone -
it is so normal to be afraid
I wish you could fine the thread that Reruns talks about her first dialysis treatment -- it is so funny and so true ---
I almost did not go to dialysis and that was 4 and a half years ago -
stop dreading it - it is going to happen no matter how you spend your time worrying -
it is not a joy - but you will have your life
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Not a joy? It's a pain in the butt! Or literally the back -- find the right pillow and the angle in which you are most comfortable. Regardless, it won't be comfortable by the fourth hour. I try to watch the little TV. It actually has cable and HD but no premium channels. But really, the center is too noisy. Probably in a smaller center it would be better. The first thing I did was make friends with as many nurses and techs as I possibly could because when they have a couple of minutes they'll s top by and talk. Also, make friends we as much of the staff as possible. My fellow "inmates" all sleep and there is no talking to them. I took my ipod but couldn't here today. Today I ordered some good Noise Reduction Headphones. I'll let you know how it works. I thought about taking my laptop as the center has wi fi, but i can't see a possible positive where I could work (play) on the computer. I think I'll get a simple DVD player instead. I've never before sat still for more than 30 minutes at a time. It is painful. You have to either sleep or keep your mind occupied. Maybe count the tiles on the ceiling or the number of times the machines "beep" at you. (that's awful). At 30 minutes before I leave, I start hassling the nurse about getting off early. It hasn't worked yet.
A real life style change... you gotta love it!
Dan
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Better late than never ...
Welcome to our community!
:beer1;
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Hello Beachlover!
I actually just joined this site last night and had a chance to get on here today to put on my introduction and read some posts. I got to yours and read it and all the replies. The one thing I can tell you for the needle sticks, if you are afraid of them hurting they do have a numbing cream or spray that you can use. Just let your doctor know that you will be interested in that so he can order it for your because it is a prescription. I know that there are two types...there is a spray (I never used that one) and there is a cream. The cream is called EMLA cream, it is a lidocaine cream. You put it on your site about an hour to an hour and a half prior to your treatment time and cover it with plastic wrap. I have used this product about a month after starting my dialysis and was actually a little upset that nobody told me about it sooner. The cream is amazing. I don't feel any of my needle sticks.
The other thing I wanted to let you know that I have a fistula in my upper right arm (dominate arm). You will still be able to use your arm, they just tell you not to lift anything heavy. My doctors have told me not to lift anything over 20 lbs. But other than that I use it all the time. It has gotten a little weaker since my fistula but I think that is because I can't lift anything heavy, like a depleation of my muscle.
Also, with a fistula once you have your needles in it is best not to move your arm. The reason for that is the needles can come out of the fistula or poke through it causing you to infiltrate. Now, with a graft you have more freedom because it is a rubber tube which is thicker than an actual vein. I don't want to make this sound scarier but I want you to know. I am only 37 and have gotten used to it. I thought I was going to have a big problem with the needles and sitting there for so long. But to tell you the truth it is not that bad. You'll get used to it. I did and trust me I'm not the type of person to sit still for more than an hour at a time.
I hope the best for you and that your fears are overcome. Just take a deap breath...I was EXACTLY the same way when I started. Be thankful of this site because when I started I didn't have anyone to talk to or ask questions. Everybody here seems to be very helpful.
God bless!!!!!! :flower;
PS. remember to ask for the emla cream.