Changed from PD to Hemodialysis with a neck line..Feel terrible

[TheHelpfulTroll]

Hi
I have not been here for a couple of years but now I am back
I took myself off PD after a couple of years on it ( it seems my tube was faulty since it was fitted hence the terrible pain on draining ).
Now I have has an emergency line fitted & the dialysis I get is making me ill....My blood pressure has increased to 201/102 & it was around 140/80 before I started hemodialysis....Every time I am on hemodialysis my blood pressure gets higher & its at the point where I have a terrible headache. I have been asking for the couple of months since I have been on hemodialysis to get another blood pressure tablet & theres been only words & no action from the renal unit. I went to my doctor the other day & was sent to the medical assessment unit where they gave me an additional tablet straight away...since I still produce up to 2.5litres of urine in a  24hr period I am going to stop my hemodialysis till the renal unit at arrowe park hospital on the wirral get their act together & get control over what is clearly a high blood pressure.
I rang the unit today & got the typical response of " do you know the dangers of missing your dialysis?" which of course I do BUT I also know the dangers of running a high blood pressure so have told them I will start my dialysis again when they can get their act together with getting my blood pressure under control instead of telling me every time I mention my high blood pressure that they must do something about my high blood pressure & sticking me on the machine & then saying to me when I come off with an even higher blood pressure that they must take action & get my bp under control.
I find this most annoying that they must do something about my high blood pressure & then fail to act leaving me with massive blood pressure & headaches.
It almost seems like they are trying to kill off the rest of my kidney function......& just so you all know I was on pd for around 2 years & stopped taking ANY dialysis since the end of December 2011 till the end of June 2012......I didn't tell my consultant till Feb 2012 when he told me my figures were the best on the unit..at this point I told him that was great since I had not had any dialysis since the end of December...the look on his face was great since it shocked him.....I have only had the emergency catheter for a short time after they contacted me to tell me that overnight my creatinine clearance had risen to over 1000 & they needed to fit an emergency line.
I believe that cuts in the UK NHS budget are affecting the care of renal patients in a bad way..I believe we now have to many specialist nurses & no where near enough general nurses & it cant be long before many patients die due to poor care from lack of general nurses.
A case of to many chiefs & not enough Indians

[Rerun]

     I wish I could have seen his face when you said 'good thing my labs are the best in the clinic cuz I stopped dialysis'.

Sounds like you have time on your side.  Watch what you eat and let them know that you are the boss of your health care.

           

[Restorer]

Are you on clonidine? What about a beta-blocker like metoprolol? I had the same issue with my blood pressure when I was on both of those.. It was as if I were in constant withdrawal from it, constant rebound hypertension. Once I stopped taking the clonidine (stopped the metoprolol, then tapered off the clonidine), my blood pressure went back to normal.

What happens if you eat something during dialysis? If I ate something substantial enough, like a protein bar or a sandwich, my blood pressure would come down to normal immediately, probably because of the digestive blood flow being stimulated. Can you try that? Or talk to your doctor about trying to come off clonidine to see if that can help.

[johnswife]

My husband quit hemo all together about 24 days ago. He also had extremely high blood pressure and he thinks the same as you. They were trying in finish off his remaining function so that hemo was a must. He started dislysis with 7% and in 3 months it's now at 3%!

I have to say I think it's more a money issue to the medical people involved and not quality of care or
Even the patients needs.

My husband was speaking with his social worker one day on the phone about why his body couldn't take dislysis, the pain it was causing and everything.  Well at the end of the phone call she thought she
Hung the phone up but didn't and he could hear her and someone else laughing about it and saying he will be back.

[bleija]

i did pd for 2 years, then did a 6 month run on hemo,  in that first 2 years my creatinine always ran around five, by the end of the 6 month hemo my creatinine was at 11. and i did the high bp thing too, when i transferred clinincs my new doctor, said sometimes ppl will react to too much fluid or crap being taken off with high bp, as the body is trying to compensate the fluid loss. hemo does reduce ur own kidney function, its an obselete treatment, and we would think after so many years of the same deteriorating treatment they would have found more positive alternative rteatments, but kidney failure isnt as glorious as say cancer research so noone really cares which aggravates me. kidney failure is more financilly demanding , as we cant go i nto remission, our best outlook is a transplant and not everyone is even eligable for that. and even with a transplant, tons of drugs tons of labs, tons of appointments, but definintely better than dialysis... ok my little rant i think im done for now

[cassandra]

Dear THT maybe as your BP is great before D, and ridiculously high during, and after D, could you look at what your bloodpump speed is on? When 'they' inadvertently put mine on 380, or 350 I get headaches, and heartpalpitations within 10 minutes so I turn it (slowly cos I'm on HDF) down to 300, and the last hour on 270 so I am able to drive myself home.

good luck Cas