How I Started Dialysis on Pearl Harbor Day

[mallory]

It's true, I officially started dialysis on Pearl Harbor Day.  Guess that will always make it easy to remember.  I am officially on PD, and it's going well.  Here's a little of the background, I hope it might help someone else who's starting PD and has questions.

I had two days of training once my catheter was healed.  Last Wednesday I went to the clinic with my sister so she could learn along with me.  First, they added the transfer set to my catheter.  Wow, now the catheter is sooooo long, it's kind of strange.  Then they told us over and over again how important it was for everything to be as clean as possible, and that the most critical time is when you are connecting and disconnecting.  Okay, we're ready

They warm up the bag of 1.5% solution in the microwave for three minutes, tell me make sure you mix up the bag and make sure you shake all the bubbles to the top, you do not want air in you.  Now we wash our hands for at least a full minute, and get the supplies ready.  Clamps for both the fill and drain bags, a minicap to close the catheter when we're finished, a sterile towel to lay the connection on, masks for everyone in the room, and alcohol hand sanitizer.  I was so nervous I was having a hard time paying attention to everything, but, luckily, they gave me a very good step-by-step list. 

So, we hang up the fill bag and weigh it.  It weighs 2000 ml.  They clamp it off and break the frangible in both bags, then open the clamp so it gets the air out of the tube.  They re-emphasize that you do not want to get any air bubbles in you.  Then we clamp off both bags, lay the sterile towel on my lap, everyone puts on a mask, I washed my hands with the sanitizer, took the cap off the bag, took the cap off the catheter, and connected.

Ahhhh, now you can take the mask off, that's good.  I was so nervous I felt like I couldn't breathe, but I was fine.  I couldn't feel the solution draining in, which they said was good.  Then we clamped off the fill tube and drained some out.  At the end, I felt a "pull" in my stomach, they said it's like when you suck up the last of a drink through a straw, that's why you feel it.  Not uncomfortable, but I could feel it.  We practiced a few more times, they drained it completely out, they weighed it and notated it on my log sheet and I went home for the day.

On Thursday, we practiced some more.  I was much more confident, and much less nervous.  It went fine.  They only had me putting on 1000 ml. of solution, to give my peritoneum time to stretch to accommodate the whole bag.  I switched to 1500 ml. on Saturday.  When they sent me home on Thursday, I was on dialysis.  They sent me 6 boxes of solution, an IV pole, a scale, and a bunch of other supplies.  Then they told me my first shipment will be coming on Thursday, December 14th, and that it will be between 50 and 60 boxes.  I went right home and started planning on where I will keep everything.

It really hasn't been bad.  Yesterday I had to go get chemo, and that made my blood pressure drop really low, to 70/40.  They said I'll probably be able to start tapering off some of my blood pressure medications soon.  I feel very, very full, it's making it a little hard for me to breathe.  So they said I'll stay at 1500 ml. for a little while until I get more used to it.  It makes it hard to eat too, so maybe I'll lose weight.  I just hope I don't gain any.

A couple of things I was a little surprised about.  There is a tremendous amount of garbage from this process.  That may sound stupid, but my tiny, cute little bathroom garbage can gets filled up four times a day now.  I clearly need a new can.  And, the timing of CAPD is a little overwhelming while you're working.  Today is my first day back at work full time, and doing dialysis four times a day and working doesn't leave much time for anything else.  It will be good to get on the cycler.  They said I can probably start training for that within a couple of weeks.

I was so glad that I had found this site and so thankful for all of your good advice when I started.  I was thinking that I felt very well prepared and I already understood so much of what they were saying, and still, I was nervous.  I can't imagine how scared I would have been if I hadn't gained so much knowledge from this site.

Hope this helps some other newbie, I promise you, it's not as bad as you think it will be, don't worry!

[Sluff]

Thanks Mallory for sharing this with us.

 

[nextnoel]

Congrats on doing so well  , and thanks for sharing with us - everything I learn from people such as you makes my future seem a bit more do-able.

[Sara]

Thanks mallory for posting that.  I had to laugh at your "cute tiny trash can" because I can just picture the whole scenario.    Walmart has some good-sized white trash cans that should work.   

[jbeany]

 

Cheers to you for making it thru!

[Ohio Buckeye]

I was wondering how you are doing.
You will have more free time and get more settled in when you
start the cycler.  I'm glad you are doing well.

[angela515]

Congrats mallory, I was wondering how you were doing.  

I just wanted to mention about the air thing since it was brought up a lot....you will know if you get air in ya... i dont know about anyone else but for me personally if I get air in, my shoulder hurts... it usually goes away after a day or two, but it hurts enough for me to take some pain medicine. So if your shoulder ever hurts, it's probably air. 

[kitkatz]

Dialysis and chemo!!!  Oh my you are a busy little bird dog out there!  I hope all goes well for you now that you have started PD.

[anja]

Mallory, I'm so glad that many of your questions were answered thanks to IHD before you  started.  Yes, it also seemed to me that I got little of anything else done when I was doing manuals, but you will be glad you learned it also. ( and it will make you LOVE the cycler!)  Congrats on learning so quickly and keeping your head up through this AND chemo! 

[goofynina]

Hi Mallory and welcome to the world of PD,  reading your post brought back so many memories for me of when i first started.  My advice to you is (especially once you get on the cycler)  get a  very large trash can, (like a 13 gallon) and use that only for your supply garbage.  It adds up so quickly, but if you keep it by the cycler and throw everything in the trash as your done with it, its not too bad,  i used to throw it away in the kitchen garbage which wasnt a good idea cuz with all the other garbage it would use all my garbage bags up quickly.   Please remember we are here for you always and always ready and willing to answer any questions you may have.  Good Luck to you, by the way,  when are you going to get on the cycler?  Life is going to be so much easier when you do 

[AlasdairUK]

Thanks for the update,

I'm glad it is going well. It is good to get the gremlins out the way and now you know what to expect.

[Fox_nc]

Thanks for the idea Goofynina!  I'm starting CAPD on Tuesday and thought I had everything all set.  Now I gotta run to Wal-Mart and get a new trash can.  But at least the trash can isle shouldn't be too packed with holiday shoppers :-)

[angela515]

I'm not sure if you live in the city or whatnot, but my parents live in a very very small city so we can burn. So I throw my lines and used dialysate bags in the garbage, but the plastic bags the dialysate comes in directly out of the box and the box itself, we burn in a burn barrell each week. It's easier for us, because the town we live in will only take 3 boxes (folded up or not) per week, so we would never catch up in getting rid of my boxes that way since I use too many per week. Just a thought if it's a possibility.

[Sara]

I don't think you're supposed to burn plastic - something about toxic fumes and it being really bad for the environment?  Somebody probably knows more about this than me.   

[angela515]

Everything we burn from my dialysis use was approved by the city mayor. She came by and we showed her (last yr when we first moved here) everything we used and she showed us which things could be burned. 

[mallory]

I can't burn anything where I live, but I have made peace with my trash.  I got a bigger trash can, it helps.  So far, so good.  I've had a couple of issues, but nothing major.  My blood pressure used to be pretty high, now it just dropped like a rock and it's quite low.  They're trying to get my BP med's regulated, that will help.  As you can imagine, I feel a little shaky with the low BP.

My PTH is at 753, so they started me on Hectorol yesterday.  I've read all the posts on parathyroid, so I'm going to be very good about taking the Hectorol.  Again, I'm thankful for all I learned on this site so I know how important it is.

They delivered my first batch of supplies from Baxter yesterday.  Holy cow!  They gave me both manual and cycler supplies, so I got 58 boxes.  They said it's about double the number I'll normally receive, which is good, it's an awful lot of stuff to store!

I go in for a PET test and to start my cycler training on the 26th of December.  I'm looking forward to the cycler.  It will make it easier to keep working.

Now I've just got to get ready for Christmas, it kind of got away from me.  I've been concentrating on starting dialysis and I'm not really ready for Christmas, I'm going to have to shop quickly!

[mallory]

Oh, this low BP thing is killing me.  How low can your BP be before it's a problem?  I have to work this week, Monday Tuesday and Wednesday, but I am really struggling to make it in.  They're trying to get my BP med's regulated, but I'm very tired and sort of dizzy.  In addition, it snowed ten inches at my house last night so it's hard to get around.

I start cycler training on the 26th, and I'm on vacation from work all that week, if I can just make it through this week, I'll be okay.

[nextnoel]

Mallory, I'm sending good thoughts your way - I know what it's like to have to struggle to get those workdays in!  Hang in there!   

[Sluff]

Hey Mallory how's the BP coming along?  Hope things are better.  Just thinking of ya...

[mallory]

Sorry, Sluff, I didn't see your message until today.  My BP seems to be getting a little better.  They've taken me off some of the medications I was on, and that's helping.  It goes down right after I take my med's in the morning, but then it seems to be okay for most of the day.

I'm really doing good.  It's a lot to get used to at one time, but I'm doing well.  Thanks for asking!

[Sluff]

I guess thats news for the Good file. Hope things continue to improve.