Frightened of Hemo: any tips for me?

[spacezombie]

Hi all!

I've only ever been on hemodialysis for a week once years ago when the docs were replacing a PD catheter. I did not have a good experience with it (the nurses always tried to take off too much water and made my blood pressure too low). The thought of hemo makes me start to freak out! I am about to undergo treatment at Cedars-Sinai to lower my antibodies so I can get a transplant soon (yay to transplants!) but in order to get the IVIG treatment and plasmapheresis, I have to get a permacath placed and start hemo. Do you have any hemo tips for me? Anything that you wished someone had told you when starting hemo?

I feel like I'll be one of the few people that is on both PD and Hemo at the same time! Bleh! 

[flip]

It's a piece of cake if you don't have too much fluid to pull off. Just be careful with your intake (if you don't have a large output) and things should be fine.

[JasonEb]

I'll second the suggestion of not talking too much fluid off, which reminds me of my first treatments...

My useless waste of a nephrologist at the time  didn't really explain anything about dialysis to me and what it does, other than "cleaning the blood".

I didn't know that it also drew excess fluid out of the body, and he didn't know (care?) that I still urinated after gaining about 3 1/2 kilos.

So my first day of dialysis, the RN asked me "how much did you weigh before all this?"  I had put on some weight recently (about 15 pounds) entirely unrelated to anything kidney-related (it was more Doritos and Zingers-related) and thought she was just making conversation.  Now I realize she was asking how much fluid did they needed to take off.

So they tried to take about 5 kilos off me.

Suffice to say, about halfway through the treatment, I crashed....hard.  Second treatment, again halfway through (because they were still trying to pull off fluid that wasn't there), another hard crash.  It wasn't until after crashing during the third treatment that the braintrust running the center realized "perhaps we're trying to take off too much fluid".

It was right there that I tdecided to not trust any decisions anyone there made involving me without thoroughly investigating the matter myself first.

~Jason E.

[Rerun]

You will have a catheater so no needles.  That is a real plus.  Ask your doc for some anti-anxiety pills and take one before you go in.  Best of luck and Yeah for the transplant.

[willieandwinnie]

spacezombie I agree with Rerun about anti-anxiety pills. Best of luck to you. 

[Bill Peckham]

If you're doing PD at the same time there should be no fluid removal - I think knowing what is going on helps. If the unit is open to the idea maybe visit when you're not getting dialyzed so they can talk you through the treatment - what to expect - when you're not hooked up to the machine.

[monrein]

Hey Melissa
If those of us who do hemo can manage, then so can you. (Especially with no needles).  I too would try to visit before my first treatment and tell them about your concerns.  They should have more time to reassure you if they don't actually have to put you on that day.  I think it's the unknown and the past experience freaking you out but try to tell yourself that this will be different.  The thought of PD freaks me out a bit but I know it's because I've never done it.  Think of all of us in there with you,  trying to make it a calm experience for you.  Be spacey not freaked.  All the best.

[Meinuk]

Hi Zombie -

When I first started with in -center Dialysis, it was described to me as a few minutes of terror and then hours of boredom.  Feeling unwell, and the enormity of kidney failure - whether sudden or slowly degenerating, that is your biggest burden.  The therapy (dialysis) well, that is actually a solution.  Sometimes painful, sometimes draining but it will make you feel better.

Here on IHD, you can read stories of people who have walked the path that you are on.  It is never exact, but each person's journey helps to demystify what is happening to you. 

Be aware of your body.  You'll know when you have too much fluid on board (if ever).  Know your blood pressure and how your body reacts.  Notice how your body reacts when you eat a certain food, or too much salt etc. 

Having CKD forces us to really step back and think about how everything affects us. 

When you are tired, rest. 

Make it a point to educate yourself about the dialysis process, understand your numbers, look at the machine and see that it is just a "washing machine for your blood".  It is a straightforward process, and you shouldn't be frightened by it.  Fear comes from the unknown. 

We, as a society are conditioned for drama, it surrounds us, in the television we watch, the movies we see and the books and magazines we read.  All of these fictional stories have a beginning, middle and an end.  Real life just isn't like that.  The alarms that we hear in the dialysis unit are just an indicator that something needs attention, although the sound is assaulting, and scary, it is just to get attention.  On television, everything is a split second matter of life or death, and while those moments do occur, they are few and far between.  On average, the alarms are just a sign to re-adjust the machine, or flip a needle - all things that technicians and nurses are trained to handle on a daily basis.

Ask questions.  THERE ARE NO STUPID QUESTIONS - so ask away - anything that you need clarification to - well, demand an answer.  If someone can't answer, then ask someone else.  If you don't trust someone who may be taking care of you, question it, you can always go to a higher authority.  Remember - the medical team that is taking care of you are people too, and they need to understand what your unique situation is.

Most importantly, remember this is only a fraction of your life.  A few hours a week that will allow you to LIVE.  Try not to let those few hours overwhelm the rest of your life.  Give your self time to acclimate to the process, and soon enough you'll be a veteran with strength and knowledge to help other through the process.

[Stacy Without An E]

Before I went on Dialysis four years ago (for the third time in my life) I had blocked out most of the awful memories of Dialysis from before.  If you can get a tour of the clinic, sit down and have a conversation with your nephrologist or social worker about your concerns (if they are competent and do their job...Dialysis attracts a good percentage of idiots) they may be able to prescribe something to help you relax beforehand.

I like the quote from an earlier poster, three minutes of terror followed by three hours of boredom.  That can certainly be true, but if you learn to deal with needle pain your treatment can be nearly event free.  Make sure you have activities to do for the duration of the time.  I bring my portable DVD player and get my movie and TV show fixes taken care of.  If you're one of the fortunate few, you'll be able to sleep.  I would take five years off of my life for that ability.

Good luck and Godspeed.

[spacezombie]

Thanks for the tips everyone! I think I'll feel much better after I've checked out the dialysis unit and talked to a few people. 

[Ambo]

I started off on hemo and did that for 7 months when I made the switch to PD.  At that time, I felt like the bionic woman with a permacath and a catherter for the PD.  After I had started on PD and it was working well, I had the central line taken out, thank goodness!  Quite frankly I never want to go back on hemo, especially being I would have to have a central line tunnelled in, killer!  If I were you, I'd ask for MEGA freezing when they tunnel the tube in.  It wlll only be a temporary thing though, right?  So enjoy your time for someone else to do all the work!  Best of luck to you with the upcoming challenge, you can make it!   

[thegrammalady]

monitor your own weight. i keep a log of my pre and post treatment weight. and the tell tech how much to take off based on how much i've actually gained between treatments. i ignore my dry weight. it's really just a guess anyway and ignores the possibility of actual weight gain/loss. never let them push your dry weight. remember you're the one in charge. question everything and expect a detailed response. monitor your labs. i ask for a print out the wendesday after they were drawn. i get the same print out they give the doctor. if there is something you don't understand, ask. this is your life we're talking about, be proactive. research, research, research.

you can do it, we're here for you.

[petey]

spacezombie --
How long ago was it you were on hemo?  My Marvin said to tell you that hemo has really changed a lot in the last 13 years since he first went on it (he's on home hemo now).  The "old" machines that he started on were awful -- lots of cramping, not exactly accurate on fluid removal.  He said the "new" machines that they have in-center now are more computerized and you don't have the problems like they used to have.  He also said it was a plus that you'll be using a perm cath for the hemo treatments -- no needle sticks and no wait-for-the-arm-to-stop-bleeding time.  He never had a problem with his perm caths (he's had 14 of them) -- keep it clean and tape it down to the chest, and you'll be fine.  Remember -- you have to be more careful with your fluid intake on hemo -- the more fluid you have to take off, the worse you'll feel when you come off the machine.  Good luck.  We'll be thinking about you.  Let us know how it turns out.

[alrightstill]

Hey Melissa!

Everyone here has already given great advice.  I'll just add to learn as much about the machine as you can - and ask (no, better yet.. DEMAND) that they turn the machine so you can see it during the treatment. 

When I was in center, I used to turn my UF off if/when I felt like it, or even lower the blood flow rate if needed and you can only easily do that with the machine within reach! 

Good luck!  You'll do fine. 

[Ang]

keep  the  fluids  in  check,you  may  feel  a  bit  yucky  for  the  first  week  or  so,  then  when  your  body  adjusts  to  dx  things  should  improve,make  sure  you've  got  things  to  do  during  dx  or  it  can  get  very  boring.
also  information  is  power.
if  and  when  they  start  needling,find  lignocaine-emlar  cream,  put  it  on  about  2  hours  before  treatmennt,  you  won't  feel  a  thing.
good  luck  with  it  all,