Jbeany's Big Day - My first day on hemodialysis

[jbeany]

One day done, infinity to go. . .

At the risk of boring the people who have done this before, I'm going to try to go into the boring little details so the next newbie on here has a better idea of what they are getting themselves into.  Bear with me if this all sounds far to familiar to you, 'cause it was all new and rather nerve wracking to me.. . .

The day started at a pretty uncivilized hour.  My appointment was at 7 am.  With winter weather, and possible bad roads, it takes at least an hour on the road.  My mother-in-law drove me today, and she is one of those chipper morning people, so of course, she was up, dressed, and cheerfully waiting for me at quarter to 6.  Ugggggh.  I made honey biscuits last night, so I would have something good for breakfast, but there was no way they were going down at that hour, so I packed them for later.  Stagger out the door in the dark, and away we go.

 The local dialysis center is in the same building as the mental health center.  How convenient.  When I crack up from all of this, they can just wheel me across the hall to the padded rooms.

We had some time to spare before they called me in, so I walked around the building a bit.  They do have a nice waiting room, and a vending area just off of it with an ice and water machine and a microwave.  That's good - I can bring my rice bag and heat it up before I go in.

They called my name a few minutes before 7, and I headed down the hall with MIL in tow.  I wasn't sure if they would let her in, but I figured the best approach was not to ask.  If they wanted her to leave, they could tell her themselves.  No one said anything but "Hang up your coats," so she stuck with me.

First things first - on the scale.  Gee, my weight looks a lot better in kilograms than it does in pounds.  The nurse holding my chart looks at the scale and double checks the paper work.  My doc has my starting weight on the chart at 3 kilograms heavier than I am when I walk in the door.  Cool - I'm already at my goal!  Can I go then?  Nope, darn, they take me to a chair anyhow. . .

Take my temp, take a standing blood pressure, take a sitting blood pressure.  The bp cuff hurts like crazy.  I need to see if I can lower how far they pump it up, but maybe next time.  My machine is a Baxter 1550, but the RN says they are switching over to Fresenius, and only have a few Baxters left.  The RN starts feeling for my graft, and says she can't feel it at the bottom.  What?  Are you kidding?  I have to tell her it's a graft, and not a fistula, and show her how it's a big curve in my arm.  She's feeling for it right between the scars, and it loops to the side.  Okay, not helping my nerves, here, lady.  She calls over the tech, who is apparently the resident genius at sticking just about anything.  The tech says "This one will be easy."  Whew!  Glad someone is good at this.

The tech starts scrubbing my arm with an alcohol prep.  I'm thinking "That's it?"  Somehow I thought there would be more to the sterilizing, but apparently not.  Then she gets out a smaller needle that looks like the ones I use for insulin.  Okay, that's got to be the lidocaine.  I've read the posts on here, and I figured I would try epoman's advice about going without.  If the pain was really horrible, I could always stop her and then use the lido.  I tell them I want to learn how to stick myself.  The nurse tells me to slow down, I can't learn it all today.  Well, yes, no kidding.  But I need to focus on learning how so I can get thru the nerves about what I'm doing here.  I explain my logic, and the tech very helpfully starts explaining what she's doing, and why she's choosing the spots she's going to stick.  That helps - something to focus on besides the idea that my blood is about to be pumped out of me. 

Epoman was right - the needle sticks are no big deal.  15 gauge needles aren't that fun, but it's over quick.  Wonderful - mark "no lido" on my chart, please, and that's one less thing I have to deal with.  Next. . .

The RN starts hooking up the machine.  She heard me explain to the tech why I wanted to know what she was doing, so the nurse does the same.  She talks me thru each thing she's doing.  I don't remember half of it now, but it's a start.  I'll figure out more as I go.  The machine is not angled so that I can see the front.  I'll have to bring a little mirror like bajanne suggested in one of her posts.  My MIL reads things off to me this time.  She hasn't a clue what she's reading, but some of it I understand from what I've read on here and other websites.  Pump speed is 350.  Bath is 3.0  Goal is 1.5.  Temp is 37.  Run time is set for 2.5 hours.  The nurse says they use a high flux dialyzer.  I need to look that up - I don't really know what that means.  They don't reuse them; I asked.

I shaking, but I'm not cold.  I don't know if it's the machine, lack of sleep, or just stress.  I cover up with the blanket I brought, but it doesn't stop me from shaking.  The nurse says they keep the room between 72 and 75.  That's warmer than I can afford to keep my place.  I could use more distracting, so MIL hands me my notebook.  I've got 3 pages of questions, and the nurse is willing to stay by my chair.

Start with the rules and regs - no cell phones in the whole building.  Ah, well, I don't own one anyhow.  There is a pay phone, so no point in spending the money then.  I can plug stuff in, but it has to be cleared by the machine tech first.   My electric throw would probably be fine.  We can have snacks and drinks, but don't eat a big meal.  Visitors are supposed to wait in the lobby for most of the time.  They can come in to help at the beginning and end.  The first week is an exception, so MIL can stay all day today.

The center is still working on getting a nxstage program.  They think it should be in February.  Not much I can do to speed that up, and nxstage doesn't want anyone on who hasn't spent at least a month in center, so I've got a ways to go yet.

Oh goody, here comes someone with a giant stack of paperwork.  Somehow I knew that was coming.  There's a form as long as my arm that they send to Medicare to tell them I'm on dialysis so they can get paid.  She needs to know my height for this one.  What the heck does Medicare need to know that for?  Do they get paid less if I'm short?   There's a release form that tells me this is part of a training hospital, and I have to give them permission to let supervised students train on me.  Hmmm. .. and another section about how they get to take pics of "any appropriate parts of my body" for education purposes during medical procedures. Lovely.  I'm not enthused about any of it, but I sign anyhow.  Next is a consent for in center dialysis.  I don't like the wording - it makes it sound like I've chosen in-center, when I want home, and claims that they offer home hemo, when they don't actually have a program right now.  Again, I sign.  The last one is permission to start giving me aranesp during my sessions.  I've been on it subcu at home for 10 years.  The dose I'm on works fine.  I really don't want to mess with it.  So I tell them I don't want the epo administered there.  This confuses them, but they take away the paper and tell me to talk to the doc.  He wont' be in until after I leave, so I'll have to add that to the list of questions I have that only he can answer right now.  Somewhere on here was a link to a study that said it was better to take it subcu.  I think I had better print that out before I go tomorrow.

The most painful part of this so far has been the stupid bp cuff.  That needs work.  The nerve damage in my wrist from the fistula that didn't work is driving me crazy, too.  I need another pillow or something to prop it on.  Holding it still this long is making it throb.  I check my sugar a lot, but it stays steady.  I'm doing fine until the machine hits .8 for fluid taken off - My head starts to spin then.  I check my sugar again, and it's fine, so MIL flags down a nurse.  My bp is 102/56.  We are soooo not making that goal of 1.5.  The nurse swings my chair up the rest of the way.  Great - now my back hurts as well as the arm the cuff is on.  She backs off the goal to 1.2, and gives me saline.  My head stops spinning, but I still feel funky.  The shaking comes and goes.  Sit and wait some more.  I've got less than an hour left to go.  MIL watches the fluid count tick up.  She gets nervous when it heads over 1.2, but I'm fine.  I finish out my time without more problems, other than a wobbly sort of feeling.  I have to be able to stand up for a blood pressure before they will unhook me.  It takes me a few minutes, but I manage to stand without falling over.  The nurse sits me back down and asks if I want to try to hold my own gauze pads on the cannulation site.  Yeah, what the heck.  I watch her untape, and start to put pressure on it like she showed me, and my pressure crashes again.  Back in the chair and watch the ceiling spin for a bit more.  The nurse finishes holding the gauze, and puts on bandaids.  A few more minutes, and I wobble over to the scale.  7/10ths of kilogram lighter after all that.  Good grief.  With all that head spinning, you would think I'd have spun off more weight than that.

I left with a bit of wobble in my step, and a lousy headache.  I came home and slept, or at least tried too.  My back does not like the lovely chairs, and it protested while I was trying to get to sleep.  I guessing that doesn't get better.  I'm still kind of light headed walking around the house, even after the nap, but maybe tomorrow will be better if I get a full night's sleep before I go.  Tomorrow's appointment is scheduled for noon, so at least I get to get up at a civilized hour. 

Onward. ..

[Sluff]

Thanks for sharing your story it was very informative. Hope your doing well after your nap.

[Sara]

Thanks for sharing that.  I didn't get to experience Joe's first (or any, really) treatments so it was nice to hear what it was like.

[charee]

Thanks for that I'm really interested in how you go as I am getting real close to doing it , next appointment is 8th January and I have been booked in to home training at the end of January hoping i can hold on til then and reading more of your posts hopefully then it won't be quite as scary as I think its gonna be. 

[Fox_nc]

Sorry to hear your first treatment was a headache, but I'm glad that you took in your notes and got answers.  Most centers are use to folks just trusting them but we all know the more informed we are the better we can handle our own care.  Here's a helpful hint I didn't know until 3 months into in center hemo.  If you are at or below your dry weight they can run you without pulling any fluids.  They were pulling something regardless of my weight and got me waaaaaay too low.  Cramping, dizzy, low BP, whole nine yards.  Doc happened to call me on a really bad day and I told him about my experience, that's when he told me this secret.  Now when my weight is already low they don't pull any fluids.  The dialyizer still cleans the toxins, but leaves my fluid level alone.  On the chart it says the goal is .6 since this is how much they put on during treatment.  Once you get a few more sessions under your belt you will be better able to determine what your dry weight is and when it needs to be adjusted.  Just hang in there!  Keep up posted!

[Zach]

Congrats!

[Zach]

Congrats!

[Epoman]

Congrats!

Trying to get that post count up Zach, by quoting yourself? 

[okarol]

Good description JB - hope you learn to stick yourself, I'd like to hear about that too.

[Joe Paul]

Good job jbeany, the first run was an unknown for me too 7 months ago.

[RichardMEL]

Great post and very informative and atmospheric.

What I found most interesting personally was the differences between what I experienced and what you did -most specifically the different rules of the unit. For example, we are allowed cell phones (my bill looks horrid with allthe text messages I belt out to feel connected!!) and visitors can come and go as they please.. I imagine one could stay all the time, but I have never seen that. About the most I have had is about 2 hours (in a 5 hour session). They limit the food/drinks we can have to pretty much a serve of sandwiches (don't ask how bad these are!) and a cup of tea/coffee/cordial/water. They factor the fluid gain into the session (I think they call it "washback") of 0.5l or so, though I have got mine down to 0.3 with reasonably accurate results. My first time the session was 2 hours and I think pump was at 300, then next time was 3 hours, then 5 hours to "ease me in" !

It's a big step the "first time" and sounds like you came through OK. Obviously the next few times you have sessions you will get more and more used to it and Ihope you avoid the dreaded cramps, crashes and other stuff that can occur!

[nextnoel]

Jbeany, thanks for the detailed description of your first day - as a "Pre-D" person, it makes me more and more confident that when my time comes, I won't be a total basketcase from anxiety.

Ya done good!

[angieskidney]

That is an amazing post! I was gonna ask if I could put a copy on my forums but I figure I am here more than there so I will just send people here lol

That was a VERY informative post! One of the best ones yet! My first time I was partly out of it but I could really relate! Thanks! 

Do they offer buttonhole? I just started button hole last Friday. It is amazing how much we can accomplish no matter how scarey it is!

They factor the fluid gain into the session (I think they call it "washback") of 0.5l or so,

Washback is the saline they give you at the end of dialysis to wash back your blood to you so it is not left in the machine. Your drink count would be ON TOP of this number. My washback is 400ml and I add 1 tea at 200ml and a few cups of ice, each equalling about 100ml each.


Hey JBeany don't let them dry you out too much as it could be bad for the fistula! Just a thought. But sometimes you DO have more fluid to come off but it is being pulled out of your body faster than your body can release it .. or something like that (would have to search for that post).

[jbeany]

Do they offer buttonhole? I just started button hole last Friday. It is amazing how much we can accomplish no matter how scarey it is!
 

No buttonholes for me - I've got a graft, not a fistula.  I'm headed back for round two in an hour, so we'll see how the weight went.  I was pretty good with food an dfluid last night, so it should be interesting. . .

[jbeany]

Day two done and over with. . .

I went at my soon-to-be regular time at noon today.  Only half the seats were filled, so I got to use a nice, new Fresenius 2008K.  I like this one better than the baxter - it's got the lovely touch screen with all the options, and the Rn I had today took the time to show me the settings.  She also angled it so I could see it from my seat.  I came in lighter than I left yesterday, so apparently I did okay with the fluid restrictions.  My goal dropped down to the 1.3 I managed yesterday.  Humm. . .didn't even manage that today.  I started to crash again just before 1 L.  I had a better idea what was happening this time, so I reached over and checked my blood pressure myself.  The nurse thought that was funny.  Well, come on, the button says "Start/Deflate" - how complicated is that?  It was low - 102/60, and I got saline again.  She had to stop me at 1.1.  I asked her about the Uf settings, and what kind I was on.  SOP is to start everyone at a constant filtration rate.  Given how I'm reacting at the end of the run, she said the doc will probably switch me to something that drops as the session comes to an end, but he isn't likely to change anything for the first week.

Apparently, the pain from inserting the needles isn't going to bother me a bit, but I crash every time they yank them out.  The nurse said that's not uncommon, and lots of people get over it after a while.  I hope I do. I can't hold my own gauze pads on the sites since I'm too busy watching the ceiling spin around my head, and I would prefer to do as much as possible for myself.

I wobbled over to the scale again.  Down another .7 kilograms, exactly like yesterday.  At least I'm consistent.  My father and stepmother picked me up, and Dad decided he wanted food.  I wasn't sure about that, but I couldn't pass up my favorite Mexican restaurant.  Wow, nothing will bring your blood pressure back up in a hurry like some salty nacho chips.  I was good - I only had a few, and half a glass of water.  The headache that I couldn't quite kick last night is back with a vengeance, but I'm not as dizzy as I was yesterday.  We'll see what a taco dinner does to my weight when I get there tomorrow.

Another day, another dialysis. . .

[paris]

Your post was wonderful and so helpful to those still facing that first day. Thanks for sharing.

[kitkatz]

Hey Woman! You done good!  I was wobbly the first few dialysis center sessions.  I almost passed out in the center I think my second session a few minutes after I was up out of the chair.   Whew!  I think your posts are very informative and I would love to see your list of questions youa re going to ask the doctor.

[anja]

 hey, jbeany, I think you are doing terrific!  I look forward to your renditions of your session.  This is a big help for all that have this experience to go through  in the future.  Thanks for sharing, sure it is not easy!

[Ohio Buckeye]

Sounds like you are doing well.
Thanks for sharing with us.

[Sluff]

I hope the best for you JBeaney. 

[Nan]

Jbeany....thanks for sharing such an important day in your life with us.  Most of us have "been there" and hearing other stories just reinforce what is going on in our lives....one of the best parts of this web site...SHARING!

[jbeany]

Well, I survived my first week, anyhow.  It did get a bit easier, although I still get wobbly when they pull the needles out.  Not sure why, but it is getting kind of annoying.  Mostly, I'm just exhausted, although how much of that is the after effects from the treatments, and how much of it is simply not being used to being up and out of the house so many days in a row is hard to tell.  I had Friday off, thankfully.  I spent most of the day sound asleep - about 12 hours straight. 

By Saturday, I pretty much had the routine down.  It still takes forever for me to stop bleeding at the end.  I'm going to get some sure seals, which might help a bit, but I'm on blood thinners for my retinopathy, so there's not much I can do but sit there and wait.  Had a different tech on Saturday, and while we're sitting there holding pressure on my arm, she kept trying to get us to stop and check long before I knew I was done bleeding.  (We were the last ones out the door, but if they want to change that so they can leave earlier, they shouldn't hook me up last!)  I told her the bleeding was because of the blood thinners, and she tried to tell me that my dosage wasn't high enough to cause a problem.  Well, then how come the other RN's and the doc said it would be?  Grrrrrrrrrr - if you don't know what you are talking about, then just shut up!

Everyone keeps asking me if I feel better.  Ummmm .. no.  I felt fine before I started, in spite of my labs.  I have lost a little water weight, and lost the yellow undertone in my skin, but so far, I'm mostly wiped out.  I think part of it is my blood pressure is a lot lower.  The doc plans to lower more of my bp meds, so I'm hoping that will help. 

Still plowing on thru. . .

[Bajanne]

Thank you for sharing this with us.  You took me back to my first days, just over a year ago. You came through like a trooper, and you have my assurance that it will all get better. Keep on keeping on, my girl!

[goofynina]

Hey Jbeany,  You Go Girl,  you got this down a whole lot better than i ever did, i always went in 5 - 7 kilos over, ugh, i hated it.  Keep up the great work 

[mallory]

jbeany, Are you doing okay now?  I know what you mean about the low BP and  feeling wiped out.  I hope you're doing better, everyone keeps telling me it takes about two weeks to get feeling better again.  Hope everything's going well!