Really Scared

[LESLIE]

HI
I am an active mother with a new grandbaby, and have just been told that within 2 weeks
I will be on diaylsis. I am scared to death..to the point where I don't want to even do it. I have a wonderfu job ( which I will not be able to keep ) I am so worried about money and all the costs. There isn ot one redeeming factor in this process that I see, other than I will live. But I read and hear horror sotries...from the needles are gigantic and are extremly painful and there is so mcuh blood loss on your clothes, to you feel even worse when you are on diaylsis than you do when you are off.
Right now, I am anemic, very tired and live with a lot of pain...if I still live like this on diaylis then why go on it.
Does anyne have any positive experiences. I talked to the manager of our Davita Center, and she was so up beat and helpful, but yet she is not on it...living with this sound horrible to me...a person who is so acative and out going...I feel so gulity that I am putting my husband and children through all this.
Any adivce ??

[annie]

Re: Really Scared

Leslie-

I know you must be terrified and overwhelmed, but you have taken an important step already- finding this board and using it. There are many great people here that can help answer your questions and allay your fears.

There are people who work while on dialysis (I am just now applying to get back in the job market ), so it is possible. There are different types of dialysis, including peritoneal (I use this type), and home hemo.

Hopefully, you will feel better once you start dialysis (I do!), not worse. There are horror stories about dialysis, like anything else, but remember that every person is different. It sounds from your post that other than kidney failure, you don't have other health problems. This can make a difference in your treatment outcomes and things like ability to work.

There are many people on this forum who have learned to live with dialysis and create active, fulfilling lives for themselves. I know they will chime in soon.

Please visit us often, and ask questions as you need to.

Be well.

[Cassie]

Re: Really Scared

Welcome, Leslie. I am not on dialysis now but am in stage 4. The thought I had while reading your post was that you need a mode of dialysis that will least disrupt your life. Are you familiar with PD--peritoneal dialysis? No needles, but you would have a catheter tube in your abdomen. It can be done during the night while you sleep. A machine, as I understand it, will drain and refill your abdominal cavity with a fluid that will remove toxins in your system.

I've heard many say the diet is not as restrictive on this method and they can still work and the dialysis makes them feel much better. The PD is easier on the body--not as much as a strain as hemo dialysis.

Check it out. There are others on here that know a lot more and you can research it on line. But as I read your post, to me, it just screamed PD is what you needed. Like I said I am not on any dialysis and not everyone can do PD, but please, do investigate it. Barring any problems doing it, I believe it would not change your life as much as other modalities and you would feel better too.

Others chime in here, don't let me mislead Leslie. Those doing PD know much more than I do about it.

[annie]

Re: Really Scared

Cassie-

I agree with you

Leslie- Ask about anything you wish, and we will answer. I have been on PD for about a month, but there are other members here who have been doing it for years (both men and women).

[hue50174]

Re: Really Scared

Welcome Leslie! I'm also on PD (7 weeks now) and I feel soooo much better than I did a few months ago. I actually was able to feel a difference after the first treatment. It's normal to be scared, but I think I was more scared of the thought of starting dialysis and fear of the unknown than I am now actually doing it. Feeling tired and being anemic is all part of the disease, but it should get better once you start treatment. You should talk to your doctor about getting EPO injections to help with the anemia. You said you will start dialysis in 2 weeks? You don't necessarily need to lose your job. I would advise you to file for FMLA (Family Medical Leave) with your employer when you take time off to get your surgery. By law, you have the right to go on leave for 12 weeks and have your job guaranteed when you return. You will get state disability payments while you are out, but you are responsible for filing the paperwork, it's not going to be automatic. As far as paying for you treatments, as an ESRD patient, you are eligible for Medicare, at any age. You need to apply at your local Social Security office as soon as you can. If you choose to do dialysis at home, Medicare will cover you starting from the first month, whereas if you go to the center, they will cover you beginning the fourth month. As far as remaining active, you should still be able to enjoy most of the activities you enjoyed before with a little extra planning and adjustments. I have a 19 month old daughter and we still jump and run and play as before but I'm careful not to let her sit on my exit site. I was just not allowed to carry her for the first month after the surgery, but now I am fine. Before starting dialysis, I couldn't even walk let alone carry her without being out of breath. If you are active now, imagine how you will be once you start dialysis? Keep positive and keep learning as much as you can. We are all here for you, so ask any questions you have...

[Judy2Life]

Re: Really Scared

Leslie,It is normal to be frightened and overwhelmed. I have been on PD for 1 month today. I still work a full time job and I hope to keep working for a couple more years until I reach my actual retirement age. I took time off over Christmas break to have my surgery done. I had my PD training during spring break and never missed a beat. Hang in there. Get informed about what is available to you. PD is a good option for all most anyone. Life can still be very good even with rotten kidneys. lol. I chose judy2life as my screen name because I feel like once dialysis began for me it was my second life, and I have been reborn. Good luck.

[malibu]

Re: Really Scared

Leslie, I feel your pain. Well almost. My husband is the one with bum kidneys and he was scared to death. I was too. When I found this website it was like a weight lifted off my shoulders. There is so much info, use the search options to find posts of stuff you want to know about. Click on SEARCH above and type in PD for example, if you are interested in that. There is a wealth of information here and you can ask whatever you want to ask, I find it very valuable to hear from the people who have been on PD for just a couple weeks or a months because this is what my husband has chosen to do when he has to go on dialysis (will be within the next couple months, I think access will be installed this next month) One person, I can't remember who it is right now, not too long ago chronicled her entire experience going on PD. It wasn't long and drawn out and it was very upbeat and informative.

We are still scared but through educating myself and the support I get here I think I am ready. If there is nothing you can do about it, grieve but then make peace with it and go on with your life.

[s.c. newbie]

Re: Really Scared

Leslie, I've been on dialysis for 2 months now. The people at Davita are very knowledgable. They started me out with a smaller needle and worked up to the large ones. With the numbing cream it is manageable. I just started back to work last week. I did work part-time 25 hours a week. I am now working 15. I would work more, but in order to be considered disabled, I have to only earn a limited amount per month. When dialysis is started, the social worker should be applying to social security for medicare. It was a little confusing, but they explain everything. Just remember, if you feel bad now, it will get better. I didn't realize how bad I felt and for how long it was until all that bad stuff is adjusted. I feel so good now it is unbelievable. It was hard at first until they got things correct in my body. I'm not saying it is easy to stay in the chair for 3-4 hours, but it is worth it to feel better. Since I can't do PD, I've adjusted to this treatment. Sometimes the diet seems a little restrictive, but I'm managing. and you will too in time.
Take my word for it, it does get better! I was surprised how quick it was; I expected it would be months or years before I would feel any better. I still get tired, but I'd rather be tired and feel better.

[LESLIE]

Re: Really Scared

Thank you everyone for all your positive thoughts, I do feel a little less overwhelemed by reading them. My doctor has not even brought up the PD type od Diaylis..that sounds good to me...more freedom and maybe I could keep my job. My HR director told me i
should go on disability...haven't gotten that far yet.

If you do PD diaylis can you swim ? I am on EPO shots now, and iron infusions once a
week, and have started to feel mcuh better. Right now, I seem to be bloated. Did anyone feel this way, or gain wieght when they didn't eat much. >?
I am not worried about the diet at all, that will be fine for me ot adjsut too..my biggest thing is having to go to a center 3 tiems a week the rest of my life...I like freedom..
I like to travel...
I really apprecaie all your thoguths and help. Htank you for writing.
Leslie

[malibu]

Re: Really Scared

Leslie use the search function and search for PD.
There are many conversations on how to swim, bathe, and shower with a PD cath. I found them very helpful and plan to find them again once MM gets his cath. The funniest one was that someone uses Glad Press n Seal! hahahaha!

[chefnancy]

Re: Really Scared

Leslie, I can assure you that most of the horror stories you have heard about hemodialysis are exceptions to the rule. In a person like yourself, with few other medical problems, after an initial period of adjustment (a month to 6 weeks) you should feel a lot better than you have for a long time. Yes, the needles are large, but they start you with smaller needles and work you up to the big ones. Also there is a numbing cream called EMLA that you can put on your access about an hour before your appointment. It removes most of the pain of being stuck.
That having been said, it does sound as if you would be a good candidate for peritoneal dialysis and I urge you to look into it. It is easier on the body and you do the dialysis in the privacy of your own home. Your schedule is more flexible so that you can work and travel if you wish. There are restrictions on swimming but most people are allowed to swim in well-maintained private pools and in the ocean. (No public pools or hot tubs). Good luck. Keep coming back and asking questions.

[LESLIE]

Re: Really Scared

Several of you have wirtten that they start you out with the smaller needle that don't hurt so much...why can't they continue to use those>? When they use the big ones, can you tell me how it feels or compares to a blood test ? Does the EMLA cream help and do most people use it ? I am touring a dialysis center tommorow at Davita. The manager has been very helpful. l am sure so much of this is the fear of the unknown..Can you just always keep a permacath in...do those work well ? The one thing I thought about , is if you go to a center, then you can meet other people and have support. If you are home, then you are alone, and don't have people to talk to. MY work requires that I am here all
day, ( 5 dyas a week ) so I don't think they will let me have 3 days off and keep my position. Are people on Diaylis alwys apporved for medicare and SSI disabiltiy ?

[malibu]

Re: Really Scared

Once you start dialysis you qualify for Medicare (even if you are not 65). Ask the Davita clinic about it when you do the tour. And just so you understand what you are getting in to with Medicare ask them what it pays for -- it is not 100%. There is no reason you can't keep your job if you do home dialysis. I think you will have a better understanding of your options and what you need to do after you visit the center.

There are lots of people to talk to on here.

In order to qualify for SSI disability there are income limitations in place. When I contacted the SS Admin they said to qualify MM would need to earn less than $940 (or somewhere around there) a month.

[jdkaran]

Re: Really Scared

HI,

My name is Joe and I have been on Dialysis since January. I am in my second week of training for Home Hemo Dialysis. This is an option you should ask about. The pros are as follows:

You can plan your Dialysis around your schedule not the other way around.

You can do your treatments 5 or 6 nights or days a week in what is your normal quite time

Since you can dialysis more you minimize the tiredness and diet -liquid restrictions

The unit is portable allowing you to travel and lead the same life you have been living

You can work after a short leave of absence

You can have a catheter enplanted below your neck and avoid needles altogether although I believe a fistula is a better long term option.

You can do Paratental Dialysis while you sleep and maintain you career. We have a football player here in Tampa who played while on Dialysis

I do not want to minimize your fears but I am willing to bet that what you have imagined is 100 times worse than your treatment will be.

Stay in touch with your Neprologist and explore your options. You can live a long life and not sacrifice any quality at all.

Best of luck...Keep writing:

[cntb2bad4u]

Re: Really Scared

hello and welcome. i was terrified of the needles and they hurt so so bad but i use lidocain and thats how i deal emla cream didnt work for me. Home hemo is the way for me i have been thru PD and nocturnal and ofcourse in center. Home has been the best Keep writing to this support group they are great