Starting dialysis this week..

[wvgirl]

Got the news on Friday that I will be getting my first treatment tomorrow or Tuesday, depending when they can fit me in. I am hoping for M,W,F. I had to get a ppd(?) test done Friday. Tomorrow I have to drive 60 miles to the Nephrologist so they can look at it and make sure it is neg. I still haven't gotten a call when to go for d, but will take my things with me in the morning in case it is tomorrow. Been waiting 25 years, now it's hurry, hurry, hurry!!
I am scared, but hopeful that I will feel better soon.

[MooseMom]

 

I have often read right here on IHD that the anticipation is worse than the reality of dialysis, so you'll have to let me know if that's true of if it's just a load of old cobblers.

I wish I knew just the right words that would ease your mind because then I would repeat them to myself, but I don't know what those words would be.  Just know that we are all here for you to help you in any way we can through an army of computer screens.  You tell those people at your center to take really good care of you or else we will     

I hope you will consider posting about your experiences of your first days/weeks of dialysis.  I'll be thinking of you tomorrow AND Tuesday and will be hoping for the best possible outcome.

[ChrisEtc]

Remember, no matter who you're dealing with you're in charge of your treatment.  You're the boss of you!  They're just doctors and nurses, they don't know everything.  ;o)

Make sure you get plenty of emtional support, it's a difficult transition to realizing you're on dialysis and dealing with all those emotions and stuff.  Best of luck!

[jeannea]

Yeah the anticipation is worse than the procedure. The actual dialysis is mostly boredom. Be nice to the techs but be firm and make sure you get the care you need. You're going to be ok. Take a blanket. Dialysis makes you cold.

[conchman]

May the Force be with You.......

 

[malaka]

Warm socks, too!   Even the heated chairs at my center don't keep me warm enough.  Also, think about an e-reader unless you're a big fan of daytime t.v. which I think works very well to drain your brain cells.

[Traveller1947]

I'll be thinking of you, wvgirl.  Bring a blanket (or two), something to read, some gum or hard candy, your favorite music--these are essentials.  Get to know the names of the people who take care of you.  That way if you need help, you can call someone by name instead of calling, "Nurse!".  Ask questions.  Show that you're interested in your care.  It's a big adjustment and can be hard emotionally, but you're prepared and you have us to support you.  All the best to you, as always.

[galvo]

Best wishes.

[Whamo]

Make it easy on yourself and follow the renal diet and fluid restrictions.   

[deniferfer]

Hope everything goes well for you. 

[Rerun]

Your new life starts NOW.

                 

                           

[wvgirl]

Went to the Nephrologist office this morning, the nurse looked at my arm and said "You are fine". They told me that I needed to be at the dialysis clinic at 1 PM for my first treatment. I was getting really nervous at this point and had 2 hours to waste till time. At 12:00 I put the Emla cream on nice and thick and took a xanax. Yeah, I needed at that point!  I got the the clinic at 12:30. A very nice lady came out to the waiting room to tell me that they had told me the wrong day!!  I told her that was fine, but I would prefer Mon, Wed, and Fri. since I have teenagers and they have the most afterschool activities on Tues and Thurs. She said she would see if she could change it. I was worried because I have an appt tomorrow with my gp at 4, so when I got home I was able to change that to 8:30. Wouldn't you know, Davita called me right after that and said they could move me up tomorrow to 10. I told them, no, since I had just changed the other appt. 10 minutes later they called again, to tell me they could get me in at 10. I told them no. A third time they called to tell me the same thing. I don't know, but so far they seem to be not really with it!  So, tonight I will try my best to get some sleep, get up tomorrow and do it again. I am to be there at 1:00.
Thanks for the advice everyone. My bag is packed.  Moosemom, I sure will do that! 

[Harveyman]

Good luck I'm new to Dialysis too it's a big transition and really is true welcome to your new life. For now that is Peace

[MooseMom]

They told me that I needed to be at the dialysis clinic at 1 PM for my first treatment. I was getting really nervous at this point and had 2 hours to waste till time. At 12:00 I put the Emla cream on nice and thick and took a xanax. Yeah, I needed at that point!  I got the the clinic at 12:30. A very nice lady came out to the waiting room to tell me that they had told me the wrong day!!  I told her that was fine, but I would prefer Mon, Wed, and Fri. since I have teenagers and they have the most afterschool activities on Tues and Thurs. She said she would see if she could change it. I was worried because I have an appt tomorrow with my gp at 4, so when I got home I was able to change that to 8:30. Wouldn't you know, Davita called me right after that and said they could move me up tomorrow to 10. I told them, no, since I had just changed the other appt. 10 minutes later they called again, to tell me they could get me in at 10. I told them no. A third time they called to tell me the same thing. I don't know, but so far they seem to be not really with it! 

Well, I guess you've just discovered the first real obstacle of dialysis, and that's having to deal with the clinic people!  I hope you can get your schedule worked out to your satisfaction.  Still, I can't believe they made you wait, eventually telling you they told you the wrong day.  I think I would have just melted right then and there.  I admire you for being able to think straight after that!

Xanax is wonderful.  Take it as often as you feel you need it. 

Thanks for the advice everyone. My bag is packed.  Moosemom, I sure will do that! 

You seem so composed.  I hope when my time comes, I will be as coherent as you.  Please wait until you are feeling like it before you report back.  I'll be thinking of you tomorrow.

[wvgirl]

This time, I got to the clinic as scheduled at 1 PM. They took me back to an office where I signed papers for over an hour. John was allowed with me, and they said for my first treatment he would be allowed to stay. At 2:45 the first needle went in. I felt a sort of pop inside my arm. I didn't look, but by the looks on Johns face, I knew blood was everywhere. I saw spots in front of me immediately. The nurse said it was from a bp drop. Second needle went in. I got all taped up. I felt fine for 3 hours. I watched a little TV. My machine kept beeping and driving me nuts. They said at one point it clotted, because my doc didn't want me to have heperin yet. Don't know why.
When it was time to get unhooked, they said they could clamp it, or it was better for the fistula for me to put pressure on it. I said I could do it. I was trying to be brave. They took the first needle out. Took my gloved finger and showed me where to hold it. I could feel the pulse so strong under my finger and it was actually scary. The second needle came out. I was trying to figure out how to manage holding them both at once, let go just a little on the first and the blood went flying! Oops. New gauze, tighter grip on both holes for about 10 minutes and it was time to go home. I felt a little fuzzy on my way out, but OK. My head started hurting on the way home. After getting home, I was hungry, ate and went to bed. It was a headache that I can't describe. Not like any ever before. I slept 12 hours and now just feel a little fuzzy, but OK. I can say this much. I hate dialysis and will do whatever it takes to get my transplant. I will also, if no transplant within a few months do whatever it takes to switch to PD. I cannot imagine doing this forever. I now understand why I have read that some people choose death over this. That's not what I am doing, but I can understand it more now.

[malaka]

Hey, it gets better.  My blood pressure used to drop way too low when the treatment was finished.  Finally, they added 1/2 hour to my treatment and it doesn't happen any more.  Headache disappeared, too.  I think you have to become acclimated to the treatment.  Boredom doesn't go away, however.   Sure, the withdrawal of the needles causes bleeding.  Wait until you spurt all over like in some horror movie.  But you soon learn how hard to clamp the gauze and the staff learns whether you clot quickly or not.

[MooseMom]

   Thank you for posting this. 

I know that a lot of people think, "Oh, you have kidney failure?  Well, they can just pop you onto the machine and Bob's your uncle, right?"  Well, no, not really. 

So you really are considering PD as an alternative if it comes to that?  I know that many people feel exactly that same way.  I just hope that whatever you choose to do, you will be comfortable with it as a bridge to transplant.  Starting dialysis is such a life-changing event.  I often imagine what it will be like, but my imagining doesn't come close to what it must really be like.

Which was worse, the actual treatment in clinic or the aftermath of treatment?

I hope you will post often because I'd really like to understand more about what you are thinking after each treatment and which decisions you will make, and why.  I don't want to be intrusive, but I'm interested in your experience and how you view it.  Thanks so much for being thoughtful enough to post this.  It is so helpful to those of us who have dialysis in our near future.

[deniferfer]

I did hemo for a few months. I hated it too!! I always felt bad afterwards and just couldn't do when it. So when it came time to pick hemo or PD. I knew I didn't like the feeling and took one look at those needles and went for PD. I'm glad I did! I have don't want to say enjoyed PD but for me it has been the better of the two evils.

I'm sorry that you had such a hard time you 1st time, just try and hang in there till you can get a Tx or if you choose to go on PD. 

[wvgirl]

Moosemom, I have been wondering, worrying and questioning everything for so long too so I am happy to tell you anything. Which was worse? It was for sure afterwards! The pain of the needles was bad, but nothing I didn't expext. Of course they hurt. During the treatment, was no big deal at all, other than not really being able to move my arm, I was fine. Unhooking was pretty scary, because of the blood. The wiped out horrible feeling afterwards was for sure the worst part of it and the part I didn't realize was going to happen. Last night, I was lying in bed crying I felt so bad. I CANNOT even imagine feeling like that 3 days a week, which I think too is why I was crying. It all really hit me last night like a ton of bricks. No cure, transplant if lucky may last 10-15 years then this again, then maybe another transplant, just maybe, then if lucky some more time, then this again till I die. OK, I am really depressing today!! Sorry about that!
Deniferfer, I will for sure try PD if I do no better within a few weeks. I just thought, since my wait time on the transplant list is a short one and I should only need dialysis for about 6-9 months, in center could be doable. I now am questioning it.

[Joe]

I can't relate to the washed out feeling you are describing after doing your hemo, but I went straight to PD when my Neph told me it was time. I did have a bit of advance notice, so I had the cath placed before I needed it. Wishing you the best of luck as you proceed down the dialysis path.

[MooseMom]

Moosemom, I have been wondering, worrying and questioning everything for so long too so I am happy to tell you anything. Which was worse? It was for sure afterwards! The pain of the needles was bad, but nothing I didn't expext. Of course they hurt. During the treatment, was no big deal at all, other than not really being able to move my arm, I was fine. Unhooking was pretty scary, because of the blood. The wiped out horrible feeling afterwards was for sure the worst part of it and the part I didn't realize was going to happen. Last night, I was lying in bed crying I felt so bad. I CANNOT even imagine feeling like that 3 days a week, which I think too is why I was crying. It all really hit me last night like a ton of bricks. No cure, transplant if lucky may last 10-15 years then this again, then maybe another transplant, just maybe, then if lucky some more time, then this again till I die. OK, I am really depressing today!! Sorry about that!

I understand that "ton of bricks" feeling.     I guess you can educate yourself to high heaven, but nothing can really prepare you for how you will feel afterwards, especially after the very first treatment.  There are no classes or webinars about that.  Everyone responds a bit differently.  And when you really understand that there is no cure...oh God, it's almost unbearable.

But you know, in the 10 or 15 years that will pass while you are enjoying your new, transplanted kidney (and maybe for even more), it's possible that dialysis will become a relic of the past.  There is research going on right now in engineering a bio-identical kidney.  They've already been able to construct a bladder that has actually been transplanted, but kidneys are much more complicated structures, so while it will take longer, there IS hope.  There are new machines on the horizon.  I think everyone sees that dialysis is incredibly burdensome, and there is a lot of work going on behind the scenes to create new treatments and technologies.  The future looks much brighter than the present.  But when the future looks bleak, it's hard to keep fighting here in the present.

I try to imagine myself in your shoes (and I'll be wearing them sooner rather than later), and I try to think about how I would recover from my first day...from that ton of bricks.  I'd like to think that ok, this was just the first day, and it takes time to calibrate everything so that I will feel better after a treatment.  I've heard from others that it does get better, and maybe they are right.  Let's just take one day at a time and not get ahead of ourselves.  Yes, that's what I'd like to THINK I'd be thinking, but I'd probably be sobbing in a corner somewhere.

Then, I would probably hang a lot of hope on getting a transplant sooner rather than later so that this misery would be shortlived.  I'm hoping that's what is in store for you...a short wait and then a new, free life.  Until then, keep reporting back.  Do you think you will discuss with your neph an eventual move to PD?

[ChrisEtc]

Moosemom, I have been wondering, worrying and questioning everything for so long too so I am happy to tell you anything. Which was worse? It was for sure afterwards! The pain of the needles was bad, but nothing I didn't expext. Of course they hurt. During the treatment, was no big deal at all, other than not really being able to move my arm, I was fine. Unhooking was pretty scary, because of the blood. The wiped out horrible feeling afterwards was for sure the worst part of it and the part I didn't realize was going to happen. Last night, I was lying in bed crying I felt so bad. I CANNOT even imagine feeling like that 3 days a week, which I think too is why I was crying. It all really hit me last night like a ton of bricks. No cure, transplant if lucky may last 10-15 years then this again, then maybe another transplant, just maybe, then if lucky some more time, then this again till I die. OK, I am really depressing today!! Sorry about that!
Deniferfer, I will for sure try PD if I do no better within a few weeks. I just thought, since my wait time on the transplant list is a short one and I should only need dialysis for about 6-9 months, in center could be doable. I now am questioning it.

It's important for you to have those feelings and deal with them.  I've been in dialysis for about a year and I remember when I started I was just in shock for a long time.  Then I got angry about it and then sad about it and then it just became a thing that I had to do.  I work so that helps in not thinking about it so much.  To me though the most depressing part about it is that you know on such and such days at such and such times you're going to be hooked up to a machine for several hours and deal with all the unpleasantness of being around strange people and weird noises and what have you and there's nothing you can do about it.  To give myself a more personal experience I kind of pick and choose the staff and nurses that I prefer to deal with so it becomes very familiar to me, dealing with the same people and the way they do things each time.  I always have the same person stick me with the needle and you develop a camarederie and it gets easier to accept that you're there.  It's very hard to stay positive about it of course, especially if you're a younger person.  I think you'll find your experience will be better if you try to stay optimistic and positive about your future, have a good sense of humor.  When you kind of lose hope and start feeling sorry for yourself it just kind of snowballs on you. 

[Mr. B 123]

wvgirl,

Thanks for sharing your experience, some day I will be in your shoes and this gives me some information on what to expect.  I hope and pray things get better for you.  Hang in there!!

[wvgirl]

I had my second treatment on Friday. Boy was I nervous this time! WAY more nervous than the first time! I guess because this time I knew what to expect.  The nurse(the director of the facility) who needled me the first time told me not to use so much Emla, and exactly where to put it on my arm. On the ride there, I put the cream on and took a xanax. Walked in the door, got on the cattle scale and sat in the chair. It was a different nurse this time. She said she'd been doing it for 50 years and for me not to worry. She looked at my arm and asked where the needles were put in the first time. I showed her and she said "Honey, don't EVER let anyone needle you down that low on your fistula. That should have been done higher up!" Anyway, I told her I didn't have Emla cream that high and she said " Put it all the way up the fistula next time", totally contradicting what the director had told me.  I asked her for the spray and she used that. The needles didn't hurt nearly as bad!!! I LOVE that woman!!! Same boredom as before. One of the techs was great. She was very silly, and I am a silly person so we joked around alot. After getting unhooked, waiting for the bleeding to get done, got in car, head started pounding again!  After sleeping, it was gone. This time I didn't have as much of the fuzzy feeling. It was actually much better this time. Hoping each time will get easier. Yesterday and today I felt GREAT!!! Not totally normal, but compared to before, great!   Tomorrow I will go again. It's going to get easier with time. I now have hope again.

[ChrisEtc]

That's awesome!  Glad to hear it!