Jbeany's Big Day - My first day on hemodialysis

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Things do usually get better.  Your body has to get used to dialysis.  When they get your dry weight determined that will make a difference to BP.  Never be afraid to ask any question and never think any question is too stupid to ask.  It's your body and your life and you need to be a big part of the treatment. Don't let the dialysis control your life.  You can have a life outside of dialysis.  It really helps if you strictly follow the diet that you have. 

[jbeany]

My doc dropped some of my bp meds today.  Hopefully, that will help.  I keep crashing during the last half hour, so I never quite make my goal.  I also spent most of Sunday and Monday watching the ceiling spin at home. I nearly beaned myself tipping over in the shower.  My doc didn't think that sounded like a good way to keep me healthy! 

I did get congrats form the doc and my nurse today for sticking with my fluid restrictions and not gaining more than a kilogram or so per day.  It was easy the first week, since I was too queasy to want anything.  I'll see how I do now that my appetite is back to something close to normal.

[Sluff]

I hope things are getting easier now that your meds have been adjusted.

I hope the Holiday has been good to you. 

[angieskidney]

I nearly beaned myself tipping over in the shower. 

Is that how you got your name? Just kidding! Anyway, I hope you had a good Christmas dinner without the queasiness. At first when I started HD I was going through the same thing as you. At least from my experience it gets better as they figure out where your dry weight it. I hope it gets easier for you as well! 

[gizmar]

What's particularly cool - in addition to a very complete description is that you have an underlying sense of humor about it that's really refreshing.  Keep your sense of humour - it'll get you through it all.  Keep a journal - I'm sure that many dialysis units would love to be able to give their "soon to be dialysis patients" a patient's view of the world.  I started writing a play about dialysis when I first started - I found myself laughing so hard that one wouldn't even realize that this was a life threatening condition.  Maybe one day we'll all pool resources and create a learning tool for hospitals worldwide.

[jbeany]

My sense of humor is warped, but functional.  Thank heavens for small favors.

My bp is up a bit now that I'm off one more pill, so I've been doing a bit better.  I've been driving myself to the center, which is actually easier in some ways - I don't feel like I'm sucking away everyone else's free time along with my own.  I'm bouncing back after the sessions a lot sooner.  I've even been able to run errands, cook dinner and work out when I get back.  I haven't stopped crashing yet, though.  This week, they keep trying to pull off fluid that isn't from kidney failure - it's from PMS.  Ah, the joys of being female.  After two sessions in a row of crashing and cramping badly enough to make me swear out loud (which I rarely do), the nurse today let me set my own dry weight at what I thought was the appropriate level - and tada!  I didn't didn't crash at all.  Pity I never seem to get the same person hooking me up twice in a row.  Which means that next week, I'll have to try to convince them to reset my dry weight back down to what it was before. . .  bleaccch.  That's just one more thing they don't bother to warn you about when you start.

The good news for the month is that my first appointment with the transplant team is Feb 5.  Hmmmm. . . does anyone make kidney shaped Valentines?

[angieskidney]

My sense of humor is warped, but functional.  Thank heavens for small favors.

My bp is up a bit now that I'm off one more pill, so I've been doing a bit better.  I've been driving myself to the center, which is actually easier in some ways - I don't feel like I'm sucking away everyone else's free time along with my own.  I'm bouncing back after the sessions a lot sooner.  I've even been able to run errands, cook dinner and work out when I get back.  I haven't stopped crashing yet, though.  This week, they keep trying to pull off fluid that isn't from kidney failure - it's from PMS.  Ah, the joys of being female.  After two sessions in a row of crashing and cramping badly enough to make me swear out loud (which I rarely do), the nurse today let me set my own dry weight at what I thought was the appropriate level - and tada!  I didn't didn't crash at all.  Pity I never seem to get the same person hooking me up twice in a row.  Which means that next week, I'll have to try to convince them to reset my dry weight back down to what it was before. . .  bleaccch.  That's just one more thing they don't bother to warn you about when you start.

The good news for the month is that my first appointment with the transplant team is Feb 5.  Hmmmm. . . does anyone make kidney shaped Valentines?

Ya I always have to argue with them at that time of month as well and try not to explain why as I am surrounded by men.  lol

Here we used to have this card from the Kidney Foundation that said "I love you with all my Kidney" (instead of heart) lol .. of course that was for people with a kidney transplant.

[renal30yrs]

If you can survive the first time you'll do fine for the next 30 years. Certainly my worst session was the first.

[MooseMom]

It's probably only a matter of time before I, too, become a dialysis patient, so your post was sooo helpful to me.  The unknown is always scary, and I've been scared for several years now.  I don't mean to diminish the seriousness of your situation, but I can honestly say that reading this thread has made me feel more courage than anything anyone else has said to me, and I thank you so much for that. 

[Rerun]

I just read your first day Jbeany and was laughing my ass off.  You described everything so perfectly.  I would send it to my sister so she could laugh too, but you didn't make a big enough deal out of the needles so I don't want her to see it.!   

Thank you for this post.   

[kimcanada]

Jbeany what a great way to describe your first day.

Mine wasn't all that long ago (seems like a life time) and you hit it dead on

Thanks for the great read!

Kim

[jedimaster]

getting there eh?....as time passes by it will be easier and you will be more in control! 

[kitkatz]

Has it gotten easier to do dialysis since your first day?  Inquiring minds want to know!

[jbeany]

It actually took about 3 months before I saw any noticeable difference in how I feel.  I do seem to have more energy now, at least on the 4 days of the week I'm not at dialysis.  I feel better than I did after the dialysis sessions where I crashed all the time, but I still don't like to do much after I get home.  I had dialysis today, and I've done 3 loads of laundry since I got back, as well as cooked dinner, but mostly, I've just read a book.  I have tried to work on my crafts afterward, but I have too much trouble focusing to get creative.

I still haven't started trying to self-cannulate.  I'm headed for another fistulagram at the beginning of April.  My graft is already iffy, so I'm more paranoid than ever about poking myself.  Ahh, well, if this one dies on me, I'm getting the next one in my leg.  I won't have to worry about trying to cannulate myself one handed that way.

I remain the youngest patient at my center, and so far, the only one on my shift who seems to have any enthusiasm for being in charge and learning all I can.  Case in point - the first time I tried to unscrew the connector links on the tubing at the end of my session.  The nurses usually do it, then remove the filter and tubing from the machine and dispose of them before coming back to pull my needles.  The nurse had walked over to get gloves for the both of us and while I was waiting, I figured I'd unscrew the tubes and speed things up.  We're supposed to know how to do this in case of fire anyhow, right?  So I unscrewed the red nozzle - and couldn't get it to budge.  By then the nurse was back, and I asked her if there was a trick to it.  Apparently, there is.  You have to flex it back and forth at the right point to break the vacuum seal, or the tubes won't come apart.  I got it figured out while she undid the other one.  Then she told me I was the only patient she had ever had who had tried it - no one else has ever asked about it.  I said something about needing to know for the fire emergencies, and she said maybe they should have all the patients try it once.  The unit manager comes around with a sheet of paper that you have to sign to prove that they have discussed emergency disconnects with you, and you have to tell her that you know how to close all 4 clamps and unscrew the tubes, but no one has ever mentioned that there was any special trick you needed to know.  They don't actually demonstrate it.  Yeesh - what was it that Bill Peckham called it?  "Learned Dependence"?  I'm fighting to learn something - but not that!

[goofynina]

Jbeany,  you go girlfriend,  i am so glad to hear that you are getting involved in your own care, that is good, when i was in hemo i didnt want to know nothing, see nothing, hold nothing, i was angry (as if you couldnt tell)   I am sure if i ever have to go back to hemo i will also become more involved with my care, reading posts from patients who do has inspired me to do so and you are one of them   thank you 

[kelliOR]

Jbeany,  you go girlfriend,  i am so glad to hear that you are getting involved in your own care, that is good, when i was in hemo i didnt want to know nothing, see nothing, hold nothing, i was angry (as if you couldnt tell)   I am sure if i ever have to go back to hemo i will also become more involved with my care, reading posts from patients who do has inspired me to do so and you are one of them   thank you 

Wow, Goofynina,  this is exactly my behavior when I was on hemo. I'm embarrassed to admit how noncommitted i was to MY OWN HEALTH! As if I expected OTHERS  to take care of ME.  How selfish I was.................. Everyone here is an inspiration!

kelli

[goofynina]

Now that i think of it, isn't it funny how i wanted nothing to do with knowing about anything, now, i am on PD, i have to know EVERYTHING and do EVERYTHING for myself, lol,  but hey, i'm gonna keep doing it 'til i just cant do it no more thats for damn sure

[angela515]

LOL susie... very true, on PD you have no choice but to know about everything, on hemo you can choose to know nothing if you want.

[okarol]

 

Thinking of you JBeany... 

[tyefly]

    thx  okarol for putting this thread up.....  I had not read this before.....    And All of us have been thinking and reading about Jbeany bigger day.....  the journey has been great to read and very informative....    esp for us  pre-dialysis newbies..... 
   
   this post really helps.....

              good Luck  Jbeany..... with all your journeys

                                                    kathy

[paris]

Great thread, but I am in tears.  Reading Goofynina's posts and jbeany's first day posts gave me a flood of emotions.  Jbeany is in my thoughts and prayers all through the day.   

[Bajanne]

  for bumping this, Karol !  It was great reading about Jbeany's dialysis journey and very special hearing from my Goofynina again.