Is it just me?

[MooseMom]

.
I suspect your half brother simply didn't know what to say. I find that my guy friends have more difficulty talking about my condition than the women in my life.

My half brother is a published poet.  He is remarkably intelligent and reflective person.  He has known about my kidney condition for years; it's not like he has been shocked into muteness by any disheartening revelation.  I don't know what's he's thinking (or not), but not knowing what to say is not the problem.  Anyway, it's no big deal, but I just thought it was weird.

You are right about the awkward limbo.  I don't know a lot of people in the town where I live; this is where my husband has lived for some time.  Most people who inquire about me do so through my husband.  It would be nice if occasionally someone picked up the phone and asked me in person, but I really don't care that much.  I don't know what I want from other people, so I figure if I don't know, I can't expect them to always do or say the "right thing".  As for my brother, he was the one who asked me how I was doing; I told him, and he just ignored it.  I don't plan to mention it again.  I don't really need to.

[kevno]

No it is not just you!

Every renal patient on this site as had up and downs Struggling with dialysis. Plus the side affects of dialysis. Being on hemo was never easy for me, Needle phobic! memories from a child being forced on dialysis, being held down, arm strapped to a board and Valium being given to calm me down. I was only ten at the time. But all the feelings off that ten year old stayed with me. Even when I went back on hemo at the age of 30+. I was on capd for 13 years. Plus I was told i would never have to go on hemo. YEAH! been back on for nearly ten years! Had 3 fistula's now only have a part of one working. So on lines now feel much better about hemo with no bloody needles! They say they can not form any more fistula's in my arms. So on lines until they can not get any more lines in. THEN WHAT I DO NOT KNOW But I am sure they will work something out. When the time comes.

You are not alone feeling this way, but you will get through it. Hey! we all have to, plus this site helped me through the months when they were going to amputate my leg. This site is always here, I know. It has helped a lot of renal patients with friendly advise.

Yours Kevno 

[MooseMom]

Kevno, I'm not even ON D yet, but I'm already freaking out.  But one thing this forum has taught me is that each part of the journey is fraught with unique perils.

If you don't mind me asking, could you explain more about being "on lines"?  I don't know what that means.  I can't begin to imagine what it must have felt like to be 10 years old and having to go through dialysis in the way that you did.  I can certainly understand how those feelings would never dissipate.

[monrein]

On lines, I'm guessing Kevno is referring to a perma catheter.

[MooseMom]

On lines, I'm guessing Kevno is referring to a perma catheter.

When my mom went on D on an emergency basis (after vascular surgery), she had a catheter put in her neck/chest until she got a fistula working.  Is this the same thing as a perma cath?  Are there different kinds of catheters?

Kevno, what caused your kidney failure so long ago?  I've read some of your past posts...is EPS common in long term PD patients?  What causes it? 

[kevno]

In the UK they are called Tesio Lines They are only meant to last as long as your fistula is maturing. For a fistula around six weeks. But now i have such poor veins. A fistula is no longer a option for me. So tesio lines i have had in for about the last six years but just on line and one needle in my fistula. Now my fistula as weakened so in September two new tesio lines. They have lasted in me for up to 3 years before.

As for my how my kidney trouble started.  Six years old when they found out how poorly my kidney was. I had been ill for a couple of years before that, but the doctor just gave me antibiotics. It was my Mum who took me to hospital to find out why i kept getting urine infections. They found out it was reflux. Was told must likely had from birth. Something that can be sorted out easy nowadays, (if found early enough). But in the 70's I had two operations to try to save the one kidney still working. But the operations did not work. So at the age of ten I started hemo.   

[grannysgirl]

Hi, I am still using a cather for access because there was a great possiblity of having a kidney transplant within a short time frame. Well, my donor had a change of heart. Now its two years later and I am being bullied into getting a fistula. I have not had any infections and my cather works quite well. I am even inclined to think that some one is getting paid off to send patients for fistula. Just teasing. I do understand the risk involved in keeping my cather. So, I am having a fistula surgery scheduled soon. I watch those patients who sit around me in D and they seem to be uncomfortable most of their treatment. I am praying that I will continue to be comfortable during treatment. I have seen quite a few patients where the techs have blown out their fistula. So, my plan is to learn how to put myself on and to take myself off. Is this too far fetched? I will do almost anything to keep some techs from touching me. I truly feel that people do chemo and other type of treatments and how they feel is important. I have yet to experience this in D. So, I arm myself with information so I am aware of what should or should not happen. I wish you the best. Fear is an awful thing.

[natnnnat]

Just in case grannysgirl comes back to this question she posted in june... there's a conversation going on now about putting yourself on the machine and taking yourself off, and a pretty useful article okarol posted, at http://ihatedialysis.com/forum/index.php?topic=19555.msg331277#msg331277

[Riki]

I think I may have had a different experience than most, and that gives me a bit of a different perspective.  my intro to dialysis was a baptism by fire.  We knew I was sick, and was getting steadily sicker for about 3-4 months.  But it seemed more like a flu, and it would come and go.  Some days I'd be fine, and others I was puking and passing out.  I lost a lot of weight over that time, but being 12, I had always been told that was the time when you started getting taller and really lost off that baby/kiddie fat.  I was losing so much, and I was really getting thin, I actually looked good.  My mom says that my school picture from that year was one of the best ever taken. We just didn't realize how sick I was. 

As I got worse, Mom started taking me to the doctor and to the ER, and they kept diagnosing throat and ear infections and sending me home with antibiotics.  The last was my family doctor, who told me I had pneumonia and sent me home with yet another prescription.

The next day, around noon, I remember telling my mom that I was going to go take a nap, which was something I had been doing a lot of too, along with being oddly cold, having little appetite, grinding my teeth, feeling dirty all the time (my skin felt like it was crawling), and my hands seemed to have a funny smell to them.  Later that afternoon, my little brother, who was only 6 at the time, came downstairs and told Mom that I was making funny noises.  He is credited with saving my life, because Mom wasn't planning on checking on me for at least another hour or so.  When Mom got me, I was in the fetal position, and my hands were clamped into little fists.  I couldn't move, I couldn't speak, I couldn't do anything.  My parents managed to get me downstairs, and they called an ambulance.

The doctors didn't know what was wrong me.  I remember then talking about brain seizures and strokes,life expectancies, and things like that.  Mom told them to shut up, because she realized that I could hear and understand evething they were saying.  The pediatrician came in, and because she had trained under a pediatric nephrologist (the one who looked after me, actually), she had seen what happened to me before, and she knew right away that it was kidney failure.  She took some blood, put me on calcium by IV, which actually unlocked everything, and had me airlifted to the children's hospital in Halifax.  I started on PD the next day.

We knew absolutely nothing, and learned as we went along. We didn't have the time to prepare like a lot of people do, so we pretty much did what we were told.  If the doctor said something needed to be done, it was done.  There was no resisting, no "can it wait a while?"  it was just done. As a minor, I had no choice, it was all just done.

Now that I'm an adult, and this is my third shot at dialysis, I feel the same way.  If something needs to be done, it's done. No questions.  I'm lucky that I have doctors who are patient with me, because I ask a lot of questions.  What's different now than when I was a child, if something seems wonky to me, I won't do it.  I didn't have the choice when I was a kid, because I wasn't the one signing the consent forms.

I think that because everything was made to be not that big a deal as a kid, although I'm sure my parents were petrified, it didn't seem like it was.  I got scared a lot, I hated biopsies, but I think most kids, I looked to the adults around me, doctors, nurses, my parents, to gauge how serious the situation is.  As long as they were all smiles, I was fine.

I think I've kept that kind of attitude from when I was a kid.  As long as no one else was worried, I wasn't worried.  It's not like there aren't days when I wonder why the heck I do all this crap, but those days pass, just like any other day.  I went from a relatively easy life on PD to a little more complicated life on HD, and I'm doing well.  I did cry when I was told that there was too much scarring to go back on PD, and when I got home from the hospital after being told that, I started asking about a fistula.  I had the fistula done with a shoulder block, and they gave me conscious sedation after the block was done, so if I saw what they were doing, I don't remember it. *L*  I went to my cousin's wedding 3 days later with my arm in a sling

It may be a bit of a cliche, but I go with the flow.  Sh*t happens, you deal. I've tried to not let dialysis take over my life.  I travel, I go out with friends, I'm looking into going to university.  I have days when I feel like nobody in the world gives a rat's ass about me, even though I know that's not the case. There was even a period of time a few years ago where I was trying to figure a way to stop dialysis without anyone knowing what I was doing.  Thankfully, I never did figure a way.

Man, I talk a lot.. *L*

[MooseMom]

Gosh, Riki, that's quite a story.  I guess if you've been a kidney patient practically your whole life, it's a bit easier to go with the flow.  I think I allow myself to get overwhelmed by what the future probably holds, and I am going to try hard to live more in the moment.  My mom passed away last week, and that's the ultimate distraction from my own kidney woes.  But it worked.  I haven't had time to faff about with worrying about D..I've done everything I can do to prepare myself.  And now I am just going to concentrate on getting through the next few weeks.  Both of my parents are now gone, and that fact pushes everything else out of my mind, which in an odd way is a bit of a comfort.

[Dianejt]

Man, I talk a lot.. *L*

I find it so refreshing reading your post Riki. It is nice to feel the positive energy & youthful energy. So much of our lives are filled with things that make us feel old that you perk me up. Keep on talking girl!

[Riki]

Man, I talk a lot.. *L*

I find it so refreshing reading your post Riki. It is nice to feel the positive energy & youthful energy. So much of our lives are filled with things that make us feel old that you perk me up. Keep on talking girl!

as long as I'm not annoying anyone, I'll keep talking. *L*  and writing those dang books... *G*

I'm a bit of a writer, but I need to get the fact that word counts don't matter on message boards through my head... *LMAO*

[*kana*]

I had my second fistula created about 4 months after the first one that never matured.  It has been 5 weeks and my arms still hurts bad!  I woke up during surgery when they were stapling my arm and started crying.  They told me that I'd never remember it anyhow and to stop being a baby.  I had the staples taken out 10 days later and it was the worst pain that I have ever felt and that is saying a lot.  The nurse told me that it doesn't hurt the little old ladies that come in and she couldn't figure out why I was hurting so bad.  I hate showing emotions of pain in public so for me this was big.

Ok, this is how I deal with it.  I am currently on PD and I know it wont last much longer so I wanted my fistula vs a chest cath.  I try to make friends with it when it is buzzing and wakes me up at night.  It will someday be my best friends and will be what keeps me alive.  It is apart of me and I have no choice, so I deal with it.
Kidney failure isn't easy, but seriously there are worse diseases out there that many people deal with.  I feel lucky to be kept alive while I wait for an organ.  If I had liver or hear failure I wouldn't be as lucky.  I'm thankful that this disease makes me feel tired and not in severe pain like some people.  I can pretty much look normal and still enjoy a relatively normal life.
A LOT of people have major food restrictions and fluid restrictions.  My friends daughter can't eat anything with gluten in it.  That is worse then a renal diet! 

Soooooo.......look at the positives in life and know that you are not alone or different.  Most people will either have to deal with a major life changing illness or be a care giver of someone with a major medical problem.       

[MooseMom]

Pain is a very personal thing, an experience that is unique to everyone.  I get terribly annoyed when medical people dismiss my pain as irrelevant.  Fortunately, that hasn't happened often to me, but when I hear it happening to someone else, it makes me really angry.  It's disrespectful to make anyone feel like "a big baby."

I don't ever try to hide my trauma or my fear.  I figure I have every right to feel whatever I feel, and if it makes some nurse uncomfortable or judgmental, then she is in the wrong profession.  I figure that the nurse will go home at night and won't ever remember my blubbing, so I blub away with impunity.

[KICKSTART]

Hell if it hurts im going to let you know and if my reaction to pain is too thrash my arms and just just happen to be in the way ..tough ! 

[MooseMom]

No nurse, tech or doctor should EVER ignore a patient's pain because pain is an indicator that something is not right.  Severe pain can send you into shock; it is in a doctor's best interest to investigate pain, its source and its intensity.

[jg]

MooseMom:

Sorry for the loss of your mother.   The nurses at the kidney clinic say "Pain is your body telling you something. Listen to it".
That has prevented me from  further damaging myself as I continue to struggle  getting the needle in my arm on home hemo.
I still have problems dealing with dialysis after 4 years and decades of kidney disease ( I suspect I was born with slow dying off of my kidney filters).
And my dialysis problems range from the serious  ( failing pd,  my arm blowing up on hemo)  to the bizarre.

I am struggling with my buttonholes. Last night  I got the needle in without damaging surrounding  tissues   
Then insanity reigned     I put the blood sample needle in to get the pre dialysis weekly sample.
Got the blood sample. Went to remove the blood sample needle to hook up to the machine.
Couldn't unscrew it with  my limited dexterity (one hand only being available).
Grabbed the regular  scissor to try to unscrew- failure! 
Tried a plastic blue clamp scissor  - broke the scissor. 
In desperation ( I am not a quitter!) used my fingers -  stabbed myself 
Shouted out "What I am going to do?"  - didn't ask God ( loss faith after the kidney failure)
Figured out impossible to dialysis like this. Had to remove needle from buttonhole.
And try again- success  and no further damage.
To keep from crying, laughed that at least I had an usable blood sample.

Is there a message board for patients' bizarre experiences?
jg         

[MooseMom]

MooseMom:

Sorry for the loss of your mother. 

Is there a message board for patients' bizarre experiences?
jg         

Thank you...I appreciate that.

And yes, there is such a message board...it's this one.   If it's bizarre, it belongs right here on IHD.

[jg]

Last week I wrote about my bizarre experience doing a blood sample at the start of my hemo run.
This week is about doing the blood sample at the END of my run.
I got the sample and then blood started squirting out of a line onto the carpet, the bed, and me.
I frantically clamped the line the best I could to get the flow to be a trickle.
What the beep  happened? When I took the needle out of the port, I nicked the line.
I quick call to the hemo clinic. The nurse said to tape the nick and run things very slowly to test.
Still leaking a little. So no choice but to turn off machine  and wave goodbye to about 300 ml
of blood still in the tubing. Not surprising, my blood pressure dropped and I was dizzy.
Hopefully that won't happen again. But I am sure something else bizarre will occur.
I have to keep a
sense of humour because I am fragile all the time, both physically and emotionally .
jg