Describe your 1st dialysis - with info @ advice for newbies ...

[nwigirlmom]

Hi all ...

MIL had the perm cath put in yesterday - and she really hasn't moved much at all since yesterday afternoon.  (Thank goodness her 1st dialysis isn't until Wed. because I doubt she could've handled it today.) 

And she's extremely nervous/anxious about the whole procedure in general though.  She doesn't understand how it's going to work, 7:15am is an ungodly hour, what if I have to go to the bathroom (she has an overactive colon from time to time), what if I get sick/nauseous  ...

If those who feel like it could pop on with a quick recap - as honest as possible - of your first (for first few) hemo treatments that would be awesome.  Were you cold?  Did people want to talk to you?  What is loud?  Quiet?  Were people nice?  Were you sick afterwards - for how long?  Or did you feel great - and for how long?  Did you sleep the rest of the day away? 

Or perhaps, how long it took (because I understand that hemo can take a while to get the best "feeling" out of it) till you started feel better.

MIL looks & feels like crap.  She's swollen.  Semi-confused.  Words slurred at times.  Lack of clarity.  Grumpy.  Angry.  Her toes are starting to go numb.  Her stomach hurts.  The perm cath is irritating her.  No appetitie, lack of energy & extreme lethargy.

Give me the dirt.  She's not a flowers & butterflies kind of girl (as you may have guessed from some of my other comments LOL!) and would like it given to her straight.  So tell me some stories so I can tell them to her ....

[jbeany]

I was feeling fine, and the first week actually made me feel worse.  The worst of the side effects - feeling wobbly and weak and queasy, will pass 4 to 5 hours after the session.

Tell her that they can unhook her if she has to go to the bathroom.  The first week, though, she may be too weak to stand up and go.  Bedpans are not a pleasant option, but they will give her one if need be.

I detailed my first week and the following two here -

http://ihatedialysis.com/forum/index.php?topic=2004.0

[Epoman]

Hi all ...

MIL had the perm cath put in yesterday - and she really hasn't moved much at all since yesterday afternoon.  (Thank goodness her 1st dialysis isn't until Wed. because I doubt she could've handled it today.) 

And she's extremely nervous/anxious about the whole procedure in general though.  She doesn't understand how it's going to work, 7:15am is an ungodly hour, what if I have to go to the bathroom (she has an overactive colon from time to time), what if I get sick/nauseous  ...

If those who feel like it could pop on with a quick recap - as honest as possible - of your first (for first few) hemo treatments that would be awesome.  Were you cold?  Did people want to talk to you?  What is loud?  Quiet?  Were people nice?  Were you sick afterwards - for how long?  Or did you feel great - and for how long?  Did you sleep the rest of the day away? 

Or perhaps, how long it took (because I understand that hemo can take a while to get the best "feeling" out of it) till you started feel better.

MIL looks & feels like crap.  She's swollen.  Semi-confused.  Words slurred at times.  Lack of clarity.  Grumpy.  Angry.  Her toes are starting to go numb.  Her stomach hurts.  The perm cath is irritating her.  No appetitie, lack of energy & extreme lethargy.

Give me the dirt.  She's not a flowers & butterflies kind of girl (as you may have guessed from some of my other comments LOL!) and would like it given to her straight.  So tell me some stories so I can tell them to her ....

Well I suggest you do a search or do some reading of some older posts on this site as this has been discussed in lots of threads.

- Epoman

[tamara]

My 1st dialysis was back in 99. I was pretty sick with "other" health problems which caused my kidney failure. I remember chucking up, and hemorrhaging at the same time, my catheter was bleeding due to my blood disorder at the time. I screamed and tried my hardest to talk to the nurse to Get me off this damn machine and get a Doctor, the amount of blood that was just sitting under the gauze was freaking me out. But no, her mission (and she chose to accept it!) was to complete my 1st treatment of 2 hours whatever came our way.

Thank Goodness my best friend Melissa came to the rescue! She went to the supervisor, demanded that my specialist come and see me straight away and take a look at that catheter, when he came he told the head nurse off saying someone should have called him earlier.

So I was unhooked taken back to ward and sorted out up there. But the very next day back on the machine.

When everything was going pretty smoothly, when I started talking to the lady next door, all of a sudden I see her eyes spinning and I thought she was dying.

The nurse that was taking care of me said "no thats normal she's just getting a bit flat"

Normal, hey that ain't normal for me................

The 1st month of treatments is pretty rough on the body, the body has gotten used to toxins levels that are high and all of a sudden there is nothing ,my body  spun out, really low blood pressure, vomiting. Feeling sick afterwards and capable of nothing.

But I was lucky( sort of) I got off dialysis after a month, my kidneys returned enough function to live out nearly 5 years of dialysis free life.

And then back to attack back on dialysis in early 2003.Where I went from clinic, 4 hours 3 times a week, feeling like crap to finally home, still same regime but feeling a bit better, to nocturnal treatments of 8 hours every second night, where now I feel pretty "normal" and am working.

Sorry for my long reply but felt like splurting it out...............................

[goofynina]

I wish i could remember my first dialysis treatment, i was either crying or drugged out of my mine, well, knowing me, probably BOTH    wish i could help you,   i am currently on Pd and feeling better than on Hemo,   

[kitkatz]

My first treatment was an emergency treatment done in the hospital.  However I do remember being scared the first time going in clinic.  Get the nurses to give Mom a tour of the facility before they put her on the machine.  Have them explain piece by piece what they are going to do and are doing to her.  Bring a blanket so she is warm, sitting for four hours can make you cold.  Bring a protein snack for her in the middle of treatment if she is up to eating something.  I bring a cup of ice to chew on as needed.  If you can stay with her, try to stay with her for the first time just to keep her spirits up.  It should get better as time progresses.  Sad to say yes, you can get used to dialysis being a part of life.

[scyankee]

My first dialysis(2003)  was on an emergency admission to the hospital with a groin catheter. I cried everytime I was
hooked up. Went on hemo (2005) and cried hysterically even though I knew what it was going to be like.
First and foremost be prepared for waiting to be put on and off.  I find this the MOST irritatting issue. I get crazy waiting
30-60 minutes to be put on!!!  Don't expect it to be 123. It ain't.  If she is going to use a fistula in her arm then get
some lidocaine cream from the Dr. BEFORE they start hemo. And apply it 60 minutes before not 30 like they told me.
Do not wear good clothes.  Wear jogging suits and bring a warm blanket.
Depending on her bloodpressure if it is high, she may not "crash" due to the stress of it all.  I know that is how it is with
me still after 14 months. BP fine at home, high there.
She will probably be stressed out seeing all the different conditions that are at the centers. Young, old, wheelchair bound,
amputees.  I could not look at anyone and still don't. It is not like they put you with a bunch of people your own age. They
just move you around every time you go.  Bring some magazines for her. They should have a TV for her.
Good luck to you all.
SCYankee

[Zach]

All I remember is seeing seven virgins dancing around me.     

[Jaybird]

My first experience was in-patient in a hospital. I had a fistula ready for over a year prior to it and the doc thought it was more than ready.

Well, I had some DUMB ASS nurses i guess. Cause they blew my vein 4 out of 5 days and my entire arm below the elbow went BLUE with a big ass bruise. It hurt like hell on the bruise, not the injection site.

The next week i went to a clinic and they did fine. I havnt had a blown vein since. I started self dializing less than a month after initial injections.

its different for every person, but a blown vein is the worst experience i've had so far. Right now i got a rash around the needle sites, I think its from the bandades, I just switched to paper tape and guaze. I'll see how that works.

-Jaybird

[angela515]

My first time in 1999 I went to the ER and they told me I needed to start dialysis immediately. Next thing I know I was wheeled into surgery and woke up with a graft in my arm and a cath in my chest. I then did my first dialysis treatment in the hospital through my cath. I don't remember much of it but just wondering what happened and why did it happen so fast. I also remember the dietician coming to talk to me and the social worker.

The first time I went back on dialysis after my transplant failed in 2004 I had a chest cath placed and a graft put in my other arm, but that never did work. I remember going to my dialysis center and saying hello to some of the nurses I knew from 99 when i was there on dialysis. Again I was the youngest person there on dialysis, so everyone always stared and asked questions. Thats about all I remember, b/c I blocked it out of my mind and I try not to think about dialysis too much.

[Meinuk]

I'm still a newbie, with a lot of questions, but here is how my first dialysis session went:

January 12, 2007 - The Dr's office called me to the dialysis unit, as my bloodwork was bad. (creatinine 8; BUN 124; CO2 12).  I met with the on-call Dr. & social worker.  The Dr. listed the symptoms of uremia.  I had most of them.

Decreased or no urine produced    (I still pee!! )
Fatigue
Decreased alertness
Confusion
Pale skin color
Rapid pulse
Dry mouth
Thirst
Swelling - (no swelling, I'm just fat!)

I also had:
nightmares (who knew that nightmares were a symptom)
Insomnia
really bad breath
Poor eyesight  (really, my eyesight got better/sharper after a few dialysis sessions)

So, having admitted to having ESRD, it was time.  I knew that this was coming.  I had my fistula placed 18 months before.(placed by my transplant surgeon - I've been on the list for almost 2 years) I have PKD, so this has been a waiting game. 

After signing many release forms, the social worker toured me through the unit, and introduced me to the nurses/techs (I promptly forgot all of their names, and am only just now- two months later remembering them all!).  They did not have a machine ready for me, so I went out to grab some breakfast and make some phone calls.  I came back to the unit an hour later, sat in a chair and IT BEGAN.

Of course, my first needle stick was an infiltration. Ouch, bruise.  I cramped pretty quickly.  (and still cramped when I got home) I got a headache.  And I only dialzed for 2 hours.  Of course, now I know (two months later) that I don't have fluid issues - (I still pee) so the most that can be taken off me at one time is 1.5K  (allowing .5K for rinseback) - Don't worry, I know that eventually, I'll stop peeing, and I won't just be fat, I'll be bloated too!

The social worker described dialysis to me as "20 minutes of terror and hours of boredom."

Now that it has been two months, I look forward to the boredom.  My unit is always cold, so I bring a "dialysis blankie" - of course, it is blood red.  After my second nurse inflicted infiltration, I learned that there is only one nurse who is allowed to stick me.  (until I learn to stick myself).  (EPOMAN is still an inspiration, and I hope that he can read our posts from heaven) 

I almost never meet with the dietitian - she gives me my "dialysis for dummies" bloodwork report once a month.  (for March, I got a green shamrock sticker)  too little too late.  I make the Dr. give me a copy of my real lab results and my orders so that I can go over them with an outside Dr.

I spoke with the social worker a couple of times.  I am still working full-time, so I have not applied for medicare yet.  My work insurance seems to be covering my medical expenses so far.

During my second dialysis treatment, the social worker asked me what I do to avoid depression.  I told her "I drink."  She asked me what I do to socailaze, I told her "I go to bars with my friends".  She hasn't visited with me since then. 

Also, I had to have a PPD - TB test placed.  (a shot under the skin of your arm to test for TB) and I got to do a poop test x3 (to check for blood in the stool) AND - I am now getting monthly hepatitis vaccinations.  (only for three months).  I'm tryng to stay on topic with "My first Dialysis" but since this is new to me, I seem to meld the past two months into it all.  IHD has been a font of information for me, and I have to say that taking time to read old posts really has eased my starting dialysis. 

It has been a rocky road for me the past two months, and I often think of switching dialysis units.  But I wonder if it is the case of the "devil you know is better that the devil you don't".  I'm lucky, I live in NYC, and there are plenty of units.  I originally found IHD.com because I was looking for reviews of dialysis units.  What can I say, I'm a shopper.  Who knows what the future holds.

[kitkatz]

My first dialysis was on an emergency basis in the hospital in the ICU. I remember them coming in to do the cathete rplace ment int he groin, then big machines rolling in and lying there still for four hours. No explanations or anything were given to me at the time.

[Bajanne]

I went to my first dialysis, thoroughly prepped by the community at IHD.  I didn't have to bother about needles then since it was the catheter in operation.  The downside of the catheter was that the slightest movement seemed to make the machine beep.  I slept a bit and so could not control my involuntary movements, so there was a great deal of beeping!  But I liked that fact that as soon as I was finished, I just got up and left (after weighing, of course).
I didn't have most of the symptoms that I told could follow dialysis - nausea, dizzyness, etc.
However, I did not feel myself, and though there was no specific ill feeling, I was totally lethargic afterwards.  For my first dialysis sessions, I used to just go home and lie down until the next day.

[kimcanada]

My first dialysis session was Jan.12/07 same as Meinuk

I had an appointment with my doctor the day before, and packed a bag when I went, I knew I was at the end of the road, I was scared of dialysis, but truly could not live like I was living any longer.  My only symptom was I slept about 18 hours a day.

The doctor came in and told me my creatinine was 790 , and that they had to admit me.  I was told about all the different ways to get dialysis, but I decided that  hemo was for me.  There was no beds available in the hospital (Very common in Canada) so I go a cot in emergency.  In a hallway , and watched people coming and going all day and half the night.  Finally when it slowed down a RN let me have one of the examining rooms and I was able to sleep the rest of the night.

The next morning @ 10:30 I got my catheter in went straight to Dialysis.

They wheeled me up to the unit in a bed and hooked me up, I don't remember any numbers, all that I remember is that i was cold.

I noticed a difference in my life immediately,  when I was discharged the next day I was able to stay awake until 9pm. That was like a all nighter!

[livecam]

Are you really going to make me remember it?  I think I've done a great job of forgetting.  Mine was in the hospital on an emergency basis using the femoral artery in the groin as the access.  It is one way they can get in quick in someone with no other form of access.  Was I scared?  No..not really.  I was sick as a dog and anything that was going to help was ok with me.  There was alot of information to digest that day about future dialysis, the potential for transplant, and the blood transfusion that came along with dialysis that first day.  If anything the transfusion was my biggest concern.  The blood supply is safe but what if?  Its been over 8 years now since that day and I'm just very happy to be able to look back at that day and be alive and well. 

[Adam_W]

My first week and a half of dialysis was done in the hospital. My first three treatments were done three days in a row. The first was done when I was in the ICU, and it only lasted 2 1/2 hours. I don't really remember too much about it because I was pretty out of it that day. The next two lasted the full four hours and were down right TERRIBLE! My permacath had just been put in the day before my first treatment, and even though it didn't really hurt right after it was put in, it REALLY started to hurt during the second day of treatment. It hurt so bad I could not even move my right arm. My dry weight was not known, so they basically guessed what to set my UF goal to. As a result, I learned very quickly what it's like to "crash and burn". After those first few treatments, things started to go a little better. My catheter finally stopped hurting, and I was only crashing every other treatment instead of all of them. I finally got out of the hospital, and my first treatment at the dialysis centre started fine, but it ended with me back in the hospital . About two hours into the treatment, my blood pressure shot up into the stratosphere for no apparent reason. I had an indescribably painful headache, and I suddenly could not move at all. One of the techs called 911 and I was rushed to the ER, pumped full of medicine to get my BP back to a safe level, and given a "ride on the morphine express". Not a very good start to my time at the dialysis centre. Fortunately, after about a month and a half, things are finally starting to get better and go smoothly. Take care.

Adam

[kitkatz]

Are you really going to make me remember it?  I think I've done a great job of forgetting.  Mine was in the hospital on an emergency basis using the femoral artery in the groin as the access.  It is one way they can get in quick in someone with no other form of access.  Was I scared?  No..not really.  I was sick as a dog and anything that was going to help was ok with me.  There was alot of information to digest that day about future dialysis, the potential for transplant, and the blood transfusion that came along with dialysis that first day.  If anything the transfusion was my biggest concern.  The blood supply is safe but what if?  Its been over 8 years now since that day and I'm just very happy to be able to look back at that day and be alive and well. 

I remember all that, too.  Pretty much crashed and burned in the ER.

[devon]

This thread really should be read by all us newby types.  Some really valuable information in here!

-Devon

[peleroja]

I actually felt pretty good, probably because I had had 3 emergency dialyses in the hospital, first via a groin catheter, then by my permacath.  I never felt badly on hemo (except for the time they took off too much fluid without telling me and I passed out in the store while I was shopping afterwards).  I was always very cold and brought my own blanket.  Mostly I was bored out of my skull cuz I couldn't sleep, I couldn't read because everyone's tv was much too loud, and the techs themselves were kind of loud.  When I switched to PD I was sooooooooooooo much happier!!!

[twirl]

it was on Halloween and my tech was a vampire
the needles hurt
my neph doc got mad b/c the tech did not give me those little shots for pain
he said I had no prescription
the doc said I did not need one
I was admitted to the hospital as an out patient for my first time
the doc was worried about my blood pressure
my husband was with me and two of his ex students who were in high school now in the science academy
were there as students so I let them watch me get stuck ----- one of the almost fainted

[flip]

I only did 2 hours with a 17 needle because my fistula was only 6 weeks old. I still infiltrated badly and my arm was black and blue for ages. I don't miss those days.

[Bajanne]

  Very thoughtful of you, Devon, to bring back up this very informative thread.

[MIbarra]

It was in a hospital for 2 hours with a catheter. I had just had the catheter and fisulta put in about 5 days prior. I felt hot due to some meds they gave me and a little dizzy, but nothing major. The next day, I did dialysis for 3 hours. I had one day for a break and then it was 4 hours in center for me.

[Bajanne]

Here are two of my first posts concerning my first dialysis.  You will notice that at that point I didn't know the difference between a fistula and a graft!  It was a graft that I'd had done.
http://ihatedialysis.com/forum/index.php?topic=125.msg468#msg468
http://ihatedialysis.com/forum/index.php?topic=131.msg528#msg528

[karen547]

My first dialysis- I was pretty scared of the whole process. I had a perm-cath in, so no needles that time. I had a panic/asthma attack and ad to be take off. I was freaking out and basically had the entire unit looking at me in horror. I didnt have my inhaler at that time and could hardly breath. I look back now and think wow, how silly of me, but its only natural to be scared. After that it got easier. I eventually had my fistula surgery and now i'm pretty much used to it.