This sucks!!!

[jpearce]

I've been having difficulties with my neck catheter. Half way thru dialysis it starts to burn inside and pull really hard you can see the line go up and down out of my neck. This had happen in June and they decreased my BP pills. Well today it happened again. The nurse I had told my they have to do a major increase to my dry weight and I said no. I know it's not a dry weight issue I'm not cramping or feeling nausea. This feels like I've been hit by a truck. I'm very heavy with fluid. One Dr. wants to chip away at it and then the nurses don't agree so they end up doing what they want. I blew up today  I feel horrible for doing it, but   I'm sick of not being listen to.  The nurse said this sometimes happens to other patients  as a sign their dry and I blow "I'm not the other patient I know my body better then anyone here why doesn't anyone listen"  and I storm out. I thought I washaving a breakdown.  I  don't think I've cried so hard in my life. Very frustrated.

[paul.karen]

To many people with differnt opinions.
I would agree you know your body best.

Hope it gets worked out FAST for you.

[billybags]

jpearce, It does you good to blow up now and then, especially when you know you are right. I hate to think of you being so upset, it must be so frustrating, especially when a nurse and a doctor are fighting it out, and the outcome is not what you want.Have you asked why it burns in side? My husband has had his neck catheter in for about 7 weeks now and to-day is the first time he has complained about it being tight and them struggling to get the thing going. When you next go in for diaysis ask to speak to a doctor prefferably a different one and get him to explain things, don't be put off.

[KICKSTART]

I know exactly how you feel, i havent had issues with mine , but how it was put in was horrendous ! I always trust my instinct, i hate to say it, but is it possible you are getting an infection in it (with it burning? ) Mine does pulse in my neck and sometimes it feels uncomfortable. How long has yours been in ? Is it still early days ?

[jpearce]

No, I've had the same temp almost 2 years. That's the frustrating part  I never had a problem till June of this year then it went away but today came back in full force. The arterial pressure alarm rang constantly it added an extra 1/2 hr to my time.

[willowtreewren]

So sorry to hear this. It always amazes me that the medical professionals will not listen to us patients. Nobody knows what our bodies are like better than us!

I hope you can get this straightened out soon.

 

[KICKSTART]

No, I've had the same temp almost 2 years. That's the frustrating part  I never had a problem till June of this year then it went away but today came back in full force. The arterial pressure alarm rang constantly it added an extra 1/2 hr to my time.

Hope you dont mind me asking , but how come its been in 2 yrs !!!! Over here they like to get 'em in and out asap ! They are only seen as an emergency solution if there hasnt been time to make a fistula.

[jpearce]

I've had 3 surgeries for a fistula and graft in my left arm. They took a biopsy after the failed attempts and  they say the lupus affected the vessels in my arm. My family and GP figure thatwhen I was so swollen They attempted to draw blood an give Iv's and nicked the aretery rendering useless. I meet With the Dr. for PD on oct 7. But they won't try anymore fistulas

[okarol]

  I hope you feel better soon. So sorry no one understands what you need.

[Inara]

Sent you a PM....check your inbox

[KICKSTART]

Ah that explains it ! I wondered why you had had it for so long ! Anyway i hope you get the problem sorted soon , nothing worse than pain/discomfort on top of everything else is there. 

[sico]

   That sounds bad jpearce, the catheter moving and burning.
Hopefully they sort it out for you. HD made me feel bad, but nothing happened like you describe.
I had the catheter in my chest, never got a fistula made.

[jpearce]

Well I guess were not aloud to say what's on our mind and what are worries are. Because of my words with the nurse on Wed. Soon as I got there this morning the psychologist was aked to see me. Very nice lady. I told her what had happened and she said she would act as my advocate. Yeasterday I got news that my PD procedure is booked for Oct. 13. 

[KICKSTART]

Good luck with the PD  and keep on speaking your mind !

[jpearce]

Wow very sorry about my spelling.
It's a D day I'm notall with it.

[beachking]

This is where a little bit of knowledge can go a long way  I have observed another patient doing exactly the same ..
to feel better during dialysis I take a 300mg asprin before and if feeling slugged during or after dialysis I take 1 or 2 more.  I dont take this quantity all the time only when needed . usually only 100mg asprin in the morning is sufficient for me.

If I worry of cramping  I will have a nice fresh bread rol and vegemite

If my throat is dry and continually coughing I sip my favourite coffee

for the Arterial alarm resounding it is a pressure high alarm,  usualy if the needle is not positioned properly in the middle of the artery and is partialy restricted the flow....  hopethis helps.