Hemo , Hysteria and heading out the door !

[KICKSTART]

Well this week was my 3 monthly appt with my neph and i knew i had a fight on my hands before i went in ! I had 2 issues , one was my dry weight, the other not being allowed to touch my machine . Now my neph is one of the most detached, factual,pompous doctors you will ever come across. He constantly looks at his watch , talks over you and just does not give you answers to your questions. He has this plan in his head for me and thats to reduce my BP by just pulling fluid off, regardless of the fact it isnt there. I cramp ,my BVM drops , i go light headed and he still wants to take another 2000 off me ! Well im having none of it and i told him. I was always given to understand that high bp and kidney failure go hand in hand ? I take 2 lots of bp tablets , watch my fluid , do all thats asked of me and yet its not enough. Is it my fault ive got high bp ? apparently so ! The other issue of checking bp and bvm on my machine to stop me crashing is it seems my nurses job ! Yeah right , i ve lost count of the number of times ive asked them to come over and check it only to be told im busy right now , hence i started to do it for myself. That aside i told him i wasnt a statistic , i wasnt one of his figures on a piece of paper, i was a PERSON and he really had no compassion , no understanding of the mental stress , let alone the physical stress dialysis had on a person! He then decided to change course and refer to my recent brain scan and eye tests. Now i have been told my scan came back clear when he drops this bombshell on me .....your scan shows several lesions at the front of the brain . WHAT does that mean i ask ? It means small parts of your brain have DIED OFF . Stunned i asked him what had caused this ..my high bp !!! He then got up and said right i will see you next time  and showed me the door ! Well i went into dialysis then and all i could think was what he said , going over and over in my mind. Im afraid to admit i got near hysterical , i shouted the nurse over to get me off ..no arguments , just get me off right now. All i knew was i had to get out of there , i had to get as far away as i could , sod my dialysis. So she went and got the sister , by this time i was vomiting , shaking , in a real state. The sister asked me what had happened and i related my meeting with my neph and she was mortified. She said i cant believe this and i will certainly have words with him about it. WHAT he should have told you was ...your brain scan IS clear , the lesions are perfectly normal , it happens to everyone with age. If she had a scan hers would probably be the same , it was nothing abnormal. But she could see that state i was in and said she wouldnt keep me , she would get me off , let me go home or for a stiff drink and forget about today. So i guess if you stand up to your neph , challenge his treatment this is what you get ..What better a slap in the face for me . NOW i know what you are all going to say ...change hospitals , change nephs , i cant . This hospital is my nearest and this neph covers all the units, so even if i changed hospitals, i would still be under him. We are what is called a satellite unit and he goes out to all of them to see patients , thats why our appts are only every 3 months.

[Xbandito]

I am sorry for you Kickstart and if I was in your situation (not far off it) I would have been filling in a complaint form (after slapping the neph) and taking this as high as I could...ie the hospital trust. This is unacceptable in today's NHS, I know they are stretched to breaking point but to put a patient through what you have gone through, that is diabolical.
I have to face the pulling fluid off, they all seem to think that is how dialysis is done for everyone, everyone is the same and they follow the standard text book.....but I have a secret weapon....it's called "a paddy" and I will argue with them till I am blue in the face or I win, for I am a PKD patient with 13% function and I have a river flowing out of me, so pulling fluid is a no no and they will learn that soon 
As for BP before I started D, I was fine at 123/73 and always in that ball park but my Neph decided to stop my Atenolol which allowed my pulse to race at 110 whilst resting and raised my BP to 150/105  and his excuse was my BP was too low for dialysis, I mean, a perfect BP was too low for D with no fluid being pulled off....come on!!!!!

So you cant change hospitals.....well move, I did in 2001, from a damm good Neph but lousy hospital to a so so Neph but good hospital and my wish is that my good Neph would move to my good hospital 

[billybags]

Kickstart, I don't know what to say my friend, you have my sympathy. For your neph to tell you that is unbelievable, I bet you was gob smacked. The thing is, what can you do, we are all at there mercy to a point.  I looked at a site that tells you how to bring down your BP naturally and that is to deep breath for 15 minutes four times a day, apparently it relax's the veins, I have now got Alan doing that, when he is not a sleep. I will be thinking about you. I suppose your ciggies took a bashing  when you went home.

[jbeany]

 

[kristina]

I am very sorry for what you are going through.
I think I have seen your nephrologist as well!
He sounds very very familiar!
Best wishes for better luck from Kristina.

[cdwbrooklyn]

Hi KickStart.  Sorry to hear what you were going through.  I do understand your situation.  However, I'm going to tell you what my primary doctor told me.  "Your kidney doctor can only tell you about your kidneys.  That what he specializes in.  He cannot tell you about anything else.  That what different specialists are for."  If you want to know what's wrong with your brain(if anything is wrong) go to a specialist that specializes in brains.  Your kidney doctor is an idiot.   Going forward, only talk to him about your kidneys and nothing else.  You don't need to be under that type of stress. What the hell is wrong with him?  Who do he thinks he is?  Do you have a primary doctor? If so, talk to him about other problems you have and leave the kidney doctor doing the diagnosis for the kidneys only. 

Feel better. 

[cariad]

So sorry, Kickstart. 

That sister sounds like a doll, though. Hope you can see more of her around.

[Poppylicious]

He sounds like a bit of a plonker.  And it was diabolical that he said that to you.  When you have your appintments with him are other people in the room?  I know that when Blokey goes he has at least one of the nurses from the dialysis unit in with him.  Xbandito is right ... maybe you should formally complain, although I can understand why you wouldn't want to.

But yay! for the Sister ... what a sweetheart; we need more like her working for the NHS.

*hugs*