2 months in

[mamagemini]

and the schedule is starting to get to me. Also the pain of the needles every fricking time. 
My buttonhole was screwed up so we are back to needles again. The blunt needles hurt so bad!!!!!!!!!!!!!!!!!!!!!!!!!!!!! When will this pain stop? I have been using the Lidocaine cream but it doesn't go deep in to protect me. 
Sitting for 3.5 hours is also driving me nuts!!! I hate sitting still and not being able to walk around. Ugh. I know complain complain but I have no where to take this! I don't want to bother anyone with these things because they have NO idea!!
Always an hour in I have to pee and then have to hold it because I dont want to be on that machine any longer than I have too!!!
I wish someone could invent a dialysis machine to carry around with us so we can work and not be in pain.
Today I woke up with nausea. This comes every now and then....can you still have kidney failure symptoms even on dialysis? My kidney function dropped to 7 from 8, could that be it? I just don't know all these things. The tingling after dialysis? The headaches? Achy lower back from sitting in that stupid chair.
Sometimes I want to cry but then I feel grateful at the same  time. I think I just need to sit and cry and get it over with. 

[boswife]

Im soooooooooooooooooooo sorry for what your having to go through    I wish it would go away!!! I too am grateful for dialysis, but the whole kidney failure is just sometimes hard to indure.    Im also so very glad you have here to vent because for even me, the wife OF D man, I feel like no one knows how tired and awful feeling we both can get.  Guess you can at least feel 'not alone' in this, but I hope that in time, this will smooth out for you and just become something more routien and boaring, but not painful and awful like it's being.  Well, im no good at writing at night,  head just too scrambled up and emotions flow to freely  so will quit for now.    and best wishes for this to ease up on you... 

[Mr Pink]

Ah, the old two months in blues, eh. I'm still a couple of weeks off that. I guess it takes some time to get used to it all, especially the sitting still bit, which I have to do for 5 hours. I can't say that I've had to pee whilst dialysing, although I do go everytime when I'm finished. I guess I'm trying to embrace dialysis because it keeps me alive, rather than resenting it, although I still feel irritated at times that I'm dealing with this now and not later in life. I can't say I've wanted to cry, although I'd love to go out and get hammered. Perhaps blokes deal with these things differently. I guess as individuals we find our own way of dealing with it. Weirdly, I keep track of who looks after me, where I was, and what number treatment it was. Friday will be number 20. Maybe you can do the same thing. That way, we can celebrate our milestones. As for the sitting still bit, at least we can still make some noise!     

[jeannea]

All I can say is dialysis sucks. When I did hemo I had a catheter so I could still move my hands which helped. Do you like books on tape? You can often get them at the library. For the pain, I'm so sorry. I would dread that too. I'd probably scream out loud.

Unfortunately, the nausea, headaches, etc. are not uncommon on dialysis. Esp in the beginning. For the nausea you can ask the doc if he'll let you have some Zofran. Ask for the tablets that dissolve on your tongue. Hopefully as your body adjusts your symptoms will lessen. You will figure out if certain foods or sleep patterns or whatever make you feel better or worse.

Crying can be good for you. Starting dialysis is really hard. Be kind to yourself. Hang in there. You can always vent here.

[MooseMom]

Work IS being done on a portable kidney; there is always hope.  I think we will see more and more people on dialysis.  I see nothing that makes me think that there will be fewer cases of ESRD requiring dialysis.  Inclinic dialysis is such a drain on time and resources, and while I am not the most optimistic person on the planet, I DO think that in the not too distant future, we will have more modalities from which to choose.  Sooner rather than later, I hope.

Crying can be good for you.  I like to think of it as a cleansing.  Get all of the poison out of your system.  Think of crying as a sort of emotional dialysis.

[SteveK87]

The symptoms you describe are the same ones that Ashley usually experiences quite often.  She describes the tingly feeling to a feeling of the blood going through her body.  This is usually only after treatment and not that frequent.  Like someone else had said Zofran is the ticket for nausea.  Ashley wakes up pretty often in the middle of the night or sometimes during the day with nausea and she takes it and shortly after it goes away.  The comfort issue I would highly recommend a nice lazy boy recliner of some sort and watch whatever movies or TV shows you can to take the mind off of the duration you are on.  We like to use movies because most are 2 hrs long so treatment for her is only another half hr to 45min after a movie which she usually follows with one of her favorite tv shows.  "On Demand" or whatever cable provider you have where you can watch movies or tv shows instantly is a friendly tool.  Don't fast forward commercials either.  A normal 30min show turns into  15-20 minutes.  And don't be afraid or guilty to break down and cry every once in awhile.  You'll feel much better.  As for the headaches try to monitor your BP & heart rate more even when not on the machine.  Typically when Ashley gets headaches her heart rate is something crazy like 110.

[mamagemini]

I wish I could reply too each of you....thank you for the ideas and kind words. I still can't believe that I sat in that chair yesterday and when my "sticker" came over I started crying. I have held it and held it but it finally came out and I felt like a big baby. I am normally a positive person but this is really starting to get in my head. Knowing this is forever.....gets to me. I do know in my smart part of my brain that this is for me - to keep me alive. I get it. BUT this SUCKSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

My guy told me to check out the monthly group thing....maybe I will.

Now to the ideas - I love the movie idea, I have been watching tv series but they go fast and remind me I am still sitting still. I do want to get a chair pad because my back is aching. I am on Zofran and the headaches aren't too bad. My pulse is always up after dialysis...129, 124, 111, 110 last night. Going to get to PCD and see if he can help. Tomorrow is another blunt needle sticking........ stupid kidneys.
 

[kitkatz]

Fourteen years into dialysis.  Yes, it still sucks!

Take it one day, one hour, one minute at a time.

Do things that make you happy!

[Big E]

Does your unit have wi-fi?  I always bring my tablet to dialysis and surf the web.  I also have a little portable hot spot that I pay about 35 dollars a month for, in case the center's wi-fi is down.  Just having to sit for all that time makes me absolutely insane.

Kitkatz is right -- you just have to take it one day at a time.  And she's been doing it for 14 years!

[noahvale]

^

[AnnieB]

I'm so sorry that things are so rough for you    Just know that there are a lot of loving people who are here anytime you need to let it out, complain, cry, get mad about this sucky disease 

[Whamo]

I felt the same way about hemo, so after a year I switched to PD with a Baxter machine.  It's a different set of problems, but at least my arm doesn't ache for four hours with needles stuck into me.  But infection is always a danger, and it's a hassle doing PD every night.  I was taking pain pills from my surgery to cope with the hemo pain at the end. 

[mamagemini]

Noah - Buttonholes hurt. They hurt when they put it in...he said that I heal up and (scrap the scab off) they have to pop the skin to get it back in. I have to use Lidocaine on my skin to help the "popping" of my buttonhole. After he gets it going a week or so he lets someone else do it and then its all screwy again. I do not want to do PD at all and my Neph said I am spilling to much protein right now.
Yes it is in my dominant arm upper area...I do not think i could do it.
Any other ideas? I am open to anything at this point to stop the pain of those damn needles...blunt or not. 

[natnnnat]

Regarding the back pain thing, how much exercise are you getting?  Are you walking?  You might need to start up a regular daily walk to counteract the big sit.

[Whamo]

Investigate PD, CAPD, if you want to avoid the needles.  You exchange the hemo problems for another set of problems, but PD might be a viable option for you.

[Joe]

Mamagemini, I've been doing PD for a year no and can truthfully say I really like this modality. Not sure that I could have dealt with the sticking of doing Hemo. Perps to the people that do it every day, they do have my admiration. If the sticking of Hemo is hurting you that much, I'd at least investigate changing over to PD. can't hurt.

[MaryJoe]

   I don't have any words of wisdom or advice to offer, I'm still pre-D so I've not had to face any of the issues you are having.  I just wanted to tell you that I am so sorry this has all been so difficult for you.   I hope your doctor and the center where you receive your care are able to come up with something that will make dialysis more comfortable for you.  I also think you should give yourself a break when it comes to crying.  If it hurts when they stick you and you need to cry, then cry!  I'm sure the techs and nurses at your center have seen tears before.     

[noahvale]

*

[cassandra]

Dear mamagemini I also have my fistula in my dominant upper arm, Is it that you can't face sticking the needles in, or that you might not be able to do it with your sub mittant (sp?) arm? Well, I solved the first problem with being incredibly angry. At the time I actually decided that I had to start sticking myself if I wanted to live a bit longer, and with a better
quality of life etc. The second problem was solved with practise. Practise using your 'weak' arm for normal things first. Picking up your cup, glass, knife and fork etc. Then the finer coordination, like writing, texting etc. And than suddenly it will work.

O, I nearly forgot, How long are your needles?

good luck Cas