I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: Sugarlump on June 21, 2013, 05:46:04 PM
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What would your reaction be to being told (on arrival at today's dialysis) that in future you will be weighed by a member of staff as they cannot trust us to put an accurate weight down on our forms ???
Mine was to say, Hang on a minute, I am NOT six and am perfectly capable of weighing myself and writing down the weight and if other patients choose to write fictitious amounts down, that's their problem. And at the end of the day we are adults and should be treated as much. I like to believe i am in control of my dialysis and not the staff... For the past 8 years I have weighed myself, written it down on the dialysis flowsheet and calculated how much I wish to take off. I believe I know my own body best.
But they weren't having any of it and an argument ensued for about 20 minutes, where the staff nurse was refusing to dialyse me if I didn't agree and got really heavy
I don't think this attitude helps at all. Dialysis (as you all know) is a pain at the best of times but being treated like this... I wanted to walk out.
This is one of the reasons I so want home dialysis... to escape this pettiness and monitoring. And being left kicking my heels in the corridor for an hour because the machine's not ready. And not being given any privacy when they change my femoral groin line dressings...
:Kit n Stik; :Kit n Stik; :Kit n Stik;
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having a staff member weigh us is policy. I think it's stupid. A lot of things changed when we moved from the nursing home into the hospital. We now have to wear those stupid paper outpatient bracelets when we go in, too. I'm not sure why. It's not like we're going to wander off during treatment.
They said that having a staff member weigh us had something to do with sanitizing the scale, but I've only seen the scale being cleaned once since that rule was made, and I stand on it in my bare feet. Perhaps I should start making them clean the scale before I get on it. I should start giving them as hard a time as they give me.
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I would be unhappy and I would complain to the head of the clinic. These companies are providing a service to you and they should try to be accommodating. Of course if you have no where else to go then you probably won't get a choice, because you're stuck. I am sure I was at the top of the "Bitch List" at Jenna's center, but every time they gave us crap I would call and make an appointment with the nephrologist who owned the center. They probably only were willing to appease me because we had Blue Shield AND Medicare and they were making a ton of money off of Jenna for the first 3 years of dialysis.
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You should have walked out or asked for a complaint form and sat in your dialysis chair filling it out for a half hour and then walked out. I'd also ask to see the written policy and inform them that you don't appreciate having your honesty and integrity questioned. There's a right way and a wrong way to inform customers of policies and telling your patient you can't trust them is definitely the wrong way. Don't forget, you're a customer and you have every right to be treated with courtesy and respect just as if you were at the counter at McDonalds. Actually, I get better service at fast food places than i usually get at Davita. Sad but true.
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Choice in England is non existent. They dictate where you go geographically.
Although I live equi distance to The Main Dialysis Unit and the smaller satellite unit I have to go to the smaller unit (5 chairs).
I would much prefer (after home haemo) to dialyse in The Main Unit.
There are only 2 members of staff on (of a rota of about 6) at my unit and it's extremely "cosy" and lacking in privacy/comfort. We also get no choice about times or days
of treatment.
I often feel they have the attitude I should be "grateful" to receive dialysis, and just shut up and do as I am told. But I think I should be treated with dignity and respect,
as an adult and my choices respected.
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Gee,some people must have lied about their `wet' weight at the center where I go because the staff must verify our weigh in and out.
Now IF that is your only complaint about your center,count yourself blessed.
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Apparently one person was found (this is what started it all off yesterday) to be 11kg over... :P
I just feel that for 8 years i have weighed myself and written it down myself and calculated my fluid removal amount ... and that because one person has been
fooling themselves, I shouldn't have to be treated as if I were 6.
The worst problem is definitely machine not being ready on time and having to wait an hour to get on.
Lack of choice as to where I dialyse and when too.
The fact they are refusing me home haemo because I have a femoral groin line, despite the fact we trained up for it already. They decided the risk of bleeding from this kind of line is too great.
I find the lack of privacy in our unit a big problem too. In the main unit, they have curtains you can pull round for dressing changes etc whereas in my current unit they only have a small wooden screen, which is very ineffective and not kept in the unit so staff find it a headache to go and fetch and I feel unhappy at the way they change my dressing regardess of my feelings. Sometimes I am the only female in 5.
Difficult to make a complaint when there are only 6 regular staff and they have very subtle ways of repaying hostilities.
Difficult to walk away from dialysis especially on a Friday afternoon.
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They did that at my center about 6 months ago. But I'm still allowed to weigh myself and calculate what will be taken off. I wouldn't worry, it's probably not meant for you... Just do as you have always done! G.
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11 kilos over?? Wow. How does one gain 24.2lbs between treatments? Must have been a hell of a weekend! LOL
Our unit also has a staff member record our weight. And we have to have ID cards on lanyards around our necks. As if someone is going to sneak in to get free dialysis . :rofl; The ID thing is for some kind of accreditation(sp?)
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Sneaking in for free dialysis now there's a thought!!!! :rofl; :rofl; :rofl;
Perhaps I should try...
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Next time ask for their weight. If they know yours, you should know theirs. All of them and bet they would balk at that idea. I never had to have someone weigh me at the clinic, we got on the scale, washed out own sites, and then they asked what our weight was when we sat in our chairs.
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At my clinic they watched while you weighed yourself then did your temperature while you stood next to the scale. It didn't bother me because they did it that way from the start.
The privacy for dressing change would be a bigger issue. That's the one I would fight about. Maybe bring a sheet and throw it over the whole area including the tech's head until someone is willing to put privacy screens in place.
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Sugarlump it sounds to me that its time for your campaign to get Nxstage. It took me nearly a year to get it, wrote to every nephrologist, rang every hospital I could physically get to, and I got it.
Don't give up on that.
It was the same in my clinic(s) in North England, having to be grateful not to have been infiltrated or something
Good luck honey, love Cas
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When I was on dialysis, the nurse always weighed me on my way in. Did temp, listened to heart/lungs, and asked if I'd had any problems at the same time. On the way out I would frequently just print it out and hand it over.
Now post transplant, a nurse weighs me each visit as well. In fact, I've never had a dr visit anywhere that a nurse didn't check my weight. Guess it's all what you get used to. I agree that the wording re: trust is offensive though.
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Sugarlump it sounds to me that its time for your campaign to get Nxstage. It took me nearly a year to get it, wrote to every nephrologist, rang every hospital I could physically get to, and I got it.
Don't give up on that.
It was the same in my clinic(s) in North England, having to be grateful not to have been infiltrated or something
Good luck honey, love Cas
Is Nxstage available in England??? Where can I find more out about iit?
I am intrigued. :o
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Monday when I went in for dialysis they asked to weigh me. I said no (I already have) and I still got my dialysis.
Tuesday I get a phone call to say I am being moved to the Main Dialysis Unit (as I am too complicated for a small satellite unit to manage!!!)
Made me smile since I wanted this in the first place but wasn't allowed! :)
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Monday when I went in for dialysis they asked to weigh me. I said no (I already have) and I still got my dialysis.
Tuesday I get a phone call to say I am being moved to the Main Dialysis Unit (as I am too complicated for a small satellite unit to manage!!!)
Made me smile since I wanted this in the first place but wasn't allowed! :)
:clap; :clap; :clap;
When I was in clinic, we always weighed ourselves and told them what it was. If they wanted to take more off than I was comfortable with, I could say no and they listened to me. Yes, I was very fortunate!
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I hope you are in a good, and more private, and respectful place now. If you still want info on Nxstage in our green, and pleasant land, you'll get it
Lots of love, Cas
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I hope you are in a good, and more private, and respectful place now. If you still want info on Nxstage in our green, and pleasant land, you'll get it
Lots of love, Cas
Yes please Cas
I need to know where to start researching and where i can find out more.
I really didn't think anyone had it in England...
Long term (if no third transplant forthcoming) then home dialysis is probably the only option for me to stay in control of my life, which is important to me.
I need to exercise my choices rather than jump through hoops for them
:thumbup;
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When I was in-center three years ago (wow how time flyers), I use to weight myself then wash my access, then sit in the chair I was assigned. When the tech was ready to put me on, he or she would ask me what’s my weight and record it on the sheet. Some days the tech will come over and look at the scale while I was on it (a woman of course) then record it on the sheet. I never thought anything of it. I just thought she was trying to safe time. Anyhoo, it is hard to believe that someone came to dialysis with 24.4lbs overweight. It may be that the scale was broken at the time that person weight him or herself. Anyhoo, you should not be focused to do anything you don’t want to do. So if you refuse something that really doesn’t interfere with your treatment, all the staff can do is write patient refused. If you feel you are being pressure to do something you do not fell comfort doing, you can call the Kidney Foundation and talk to someone regarding your issue.
Cheers
CDW - 8)
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Dear SL, to get Nxstage I emailed Kimal (the distributor of Nxstage in England) to ask which hospitals in my area used Nxstage machines.
You should get a reply with names of the clinics/hospitals who do.
Than you ring the dialysis units there, and go from there.
Don't give up after their initial refusal, nor medical, social, financial reasons as in some Nhs Trusts, contracts with current suppliers are 'in force'. Like with Fresenius in my trust.
Just Google Kimal UK, and after their reply, your trust, and if poss the nearest hospital with Nxstage
If you know a (dialysis)nephrologist who you like, and can get on with, than maybe he/she can help you actually getting it. That is after you have the info from Kimal.
Good luck honey, let me know how you get on, or if I can help.
Lots of love, Cas
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Sugar, you may bump into stoday now (although it's been so long since he was online that I suspect the worst) at the main dialysis unit (assuming it's where I think it is of course!)
My favourite nephrologist is in a picture on Fb this week *drools* ... you need to contact him (Dr. T) and get him on side about NxStage; they really should be offering it in East Anglia by now.
Blokey sometimes lied about his weight when he went to haemoD ... he was a naughty boy!
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At my centre, the nurses way us as part of procedure, no exceptions. It doesn't bother me.
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Sugar, you may bump into stoday now (although it's been so long since he was online that I suspect the worst) at the main dialysis unit (assuming it's where I think it is of course!)
My favourite nephrologist is in a picture on Fb this week *drools* ... you need to contact him (Dr. T) and get him on side about NxStage; they really should be offering it in East Anglia by now.
Blokey sometimes lied about his weight when he went to haemoD ... he was a naughty boy!
Do you know Stoday's christian name? We are having a local kidney fed meet and greet with hog roast and stuff in a few weeks time. I will have to look out for him :beer1;
Ahhh Dr T ... how I miss my weekly visits and a doctor that treated me as an equal in conversation. Few and far between.
I had a terrible dialysis session on Friday. Machine kept alaming. Stopped my treatment for a half an hour dwell wiith TPA and my blood clotted and I lost the line. I had to reduce fluid I
was taking off to so came off over.
Five hours of sheer aggro and fidgeting and wanting them to make the right decision and not faff about. Left home at 12 noon and got back at 7.30pm with less than 4 hours total dialysis
in that time and only 59 litres of blood filtered.
But my last potassium check was good (4.5) ::)
Not looking forward to a repeat performance on Monday. :'(
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What would your reaction be to being told (on arrival at today's dialysis) that in future you will be weighed by a member of staff as they cannot trust us to put an accurate weight down on our forms ???
"Whatever you want. I don't care; more work for you guys."
...But they weren't having any of it and an argument ensued for about 20 minutes, where the staff nurse was refusing to dialyse me if I didn't agree and got really heavy
I don't think this attitude helps at all. Dialysis (as you all know) is a pain at the best of times but being treated like this... I wanted to walk out.
Of all the possible horrors and indignities of hemo you could have lost your shit over, you went for permission to weigh yourself? Interesting choice.
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At my old centre, a staff member watched up weigh. At my current centre, we weigh ourselves and we get a little printout and hand it to the tech. With everyone except me they ask how much the patient wants to take off and if they feel they can handle the goal. Since I'm the only self-care patient, I just set my machine for however much I want to remove and the tech charts it.
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What would your reaction be to being told (on arrival at today's dialysis) that in future you will be weighed by a member of staff as they cannot trust us to put an accurate weight down on our forms ???
"Whatever you want. I don't care; more work for you guys."
...But they weren't having any of it and an argument ensued for about 20 minutes, where the staff nurse was refusing to dialyse me if I didn't agree and got really heavy
I don't think this attitude helps at all. Dialysis (as you all know) is a pain at the best of times but being treated like this... I wanted to walk out.
Of all the possible horrors and indignities of hemo you could have lost your shit over, you went for permission to weigh yourself? Interesting choice.
It's always the straw that breaks the camels back rather than the tonnes...
Little things get to me more than the major issues. Especially little things caused by attitudes. Unnecessary bureaucracy . People that don't listen to any view other than their own.
Since then they haven't weighed me and I am happy to stay in charge of my dialysis. Weight. Fluid removal. Length of dialysis. :angel;
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I don't like that we have to wait for one of the nurses or care workers to weigh us. we're adults, we should be able to do it ourselves. Besides, they're overworked enough as it is. They don't need more work, which is basically babysitting. They have better things to do
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New center I am at now weighs me as they watch Oh well. If they feel the need. I figure so much more I can get bat sh*** over.
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I'm not sure what the big deal is with them weighing you and taking your temp. Let them earn their $... The privacy issue is a way different issue. I don't have any good advice for that, but do understand. Grumpy
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I think, more than anything, it's my need to stay in control of my dialysis and treatment.
I can't be passive,
It's the only way i can deal with it. My choices not theirs. If that makes any sense
I also dislike the attitude from some nurses/doctors that once you become a patient, you are suddenly no longer seen as an intelligent adult. Someone who requires answers other than
because or my way or no way ... I question a lot of things they want to do because there are always options. An informed patient can make an informed choice.
At several points during my chequered renal history of dialysis, transplant, dialysis, transplant, more dialysis, access problems etc i have felt backed into a corner.
I have been made to feel in the wrong for refusing certain treatment and I have suffered unnecessarily with unwarranted treatment that made no difference.
I have to remind them sometimes that i am a human not a guinea pig.
And that quality of care/life is important. If their choices don't match mine, we aren't doing it. It's me that has to have live with it.
I am probably a difficult patient. I accept I am probably not easy.
But I expect to be treated as an adult and with dignity and respect.
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I think the problem Sugarlump has, and the problem I have with the same new policy, is all the other shit that's been piled on over the years. This is just one more thing that doesn't make any sense, or seems forced, or was dropped upon without any warning.
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There are two other things that come to mind...
climbs up on her soapbox!!!
One) I sometimes come up against the attitude that i should be grateful for my dialysis treatment, That sucks.
How can anyone be grateful for kidney failure that has blighted their entire life? That has shortened my working career,
restricted my family size, diminished my earning power and controls my weekly timetable etc but I am still supposed to be
grateful for my unit and the nurses in it. They aren't they out of love, they get paid to do a job at the end of the day.
My choice is a stark one, dialyse or die
Two) Our government is conducting a serious campaign against disabled and vunerable people, who through no fault of their
own have to claim benefit of some kind. To be seen as a scrounger, or work shy, or someone who bucks the system when you struggle
with kidney failure is the worst kind of slap in the face.
It doesn't make you feel good about yourself.
I have had kidney failure to some degree for nearly thirty years. I managed to work until 8 years ago, when dialysis and general health problems
restricted my physical abilities. My dialysis commitment 1pm-6pm on Monday Wednesday Friday, and quite often another hospital appointment plus
pre-dialysis session wobbles and post dialysis tiredness mean very small windows of opportunity ...Tuesday and Saturday mainly :urcrazy;
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The center I go to has a scale that prints out your weight in kg on a tear off ticket that is simply handed to the tech before and after D.
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When I was doing in center dialysis, I didn't give a rat's behind what my weight was. I knew my limit was 3 kilos and that was that. I'd rather leave with an extra half kilo on than go through the side effects of taking off too much fluid. Of course, I still urinated so there were times when I didn't even have any weight to take off.
When a tech would balk at me not taking off all my fluid, I would tell them that they were welcome to clean up the puke that was sure to ensue if they didn't listen to me. :puke;
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The center I go to has a scale that prints out your weight in kg on a tear off ticket that is simply handed to the tech before and after D.
That is what we have too, but their new policy says that a nurse or rcw must the one to press that little print button.
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The center I go to has a scale that prints out your weight in kg on a tear off ticket that is simply handed to the tech before and after D.
That is what we have too, but their new policy says that a nurse or rcw must the one to press that little print button.
Why are we NOT trusted to perform these everyday functions???
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I had a terrible dialysis session on Friday. Machine alarmed constantly and couldn't seem to suck the blood round. Eventually lines clotted and lost lines. Processed only 13 litres in 3 hours!
Had to have a TPA dwell and come back in Saturday.
Dreaded the thought of having to have another line fitted but at Main Unit, line worked fine and got a good three and a half hours with no problems. Managed 48 litres !!
Feeling bouncy now!
Dreading Monday morning, back to satellite unit that doesn't seem to be able to cope.
Had the same problem Monday, went to Main Unit Wednesday with no problems. Makes me anxious because I can't afford to have poor clearance with my high potassiums and fluid build up.
Last weeks Potassium results odd Pre dialysis 8 (after a crap session on Monday) Post dialysis 2.1.
Doc wants me to modify diet MORE and to eat Potassium binding powder with meals (Has anyone managed to eat this stuff its vile!!!)
I just want steady proper dialysis each session and no anxiety. Please.
:Kit n Stik; :Kit n Stik; :Kit n Stik; :Kit n Stik;
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SugarLump You wrote "There are two other things that come to mind...
climbs up on her soapbox!!!
One) I sometimes come up against the attitude that i should be grateful for my dialysis treatment, That sucks.
How can anyone be grateful for kidney failure that has blighted their entire life? That has shortened my working career,
restricted my family size, diminished my earning power and controls my weekly timetable etc but I am still supposed to be
grateful for my unit and the nurses in it. They aren't they out of love, they get paid to do a job at the end of the day.
My choice is a stark one, dialyses or die
Two) Our government is conducting a serious campaign against disabled and venerable people, who through no fault of their
own have to claim benefit of some kind. To be seen as a scrounger, or work shy, or someone who bucks the system when you struggle
with kidney failure is the worst kind of slap in the face.
It doesn't make you feel good about yourself."
SOOOOO True. While I have a great staff at the clinic I go to, I do understand and relate to your remarks. I think your first comment can apply to ANYONE who has not experienced a life changing event such as kidney failure and is not personally involved in the care of another person, will have that attitude. Until they experience it, they won't understand. I ride a Harley Davidson motorcycle and there is a saying we have "If I have to explain, you wouldn't understand" This can apply to us kidney failure folks too. Grumpy
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I pick my battles.
Who weighs me on the scale is not an issue for me. I just make sure that they write it down correctly.
They ask me what settings I want for the machine (weight to be removed, 20 minute BP check as opposed to 30, flow, ect.) I had to get an order from my nephrologist for the reduced BP time.
The FMC center will provide curtains for privacy if needed.
I stopped griping about the cold temperature when the director of the facility pulled a chair next to me and had a long talk with me about the reasons for keeping it cold (preventing BP falling and people getting sick). I knew him for 40 years and I let it go out of respect and the thought of having to find a different unit to go to as I did once before).
When medicare took over dialysis in '73' the object was to serve as a bridge until you were transplanted and able to return to work and be a productive member of society. They provided a vocational rehabilitation counselor and psychologist to assist you with that goal.
When they started shipping patients to satellite units at the end of the 70's they figured out that there was big money in keeping you on dialysis.
Today, If you can fog a mirror they will put you on the machine and get you in the system.
I don't know of anyone receiving a transplant at my FMC unit for the 5 years that I have been there. Our medical director is not pro-transplant and in fact Fresenius supports lobbyists to vote against the life-long immunosuppressive kidney transplant act.
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The center I go to has a scale that prints out your weight in kg on a tear off ticket that is simply handed to the tech before and after D.
That is what we have too, but their new policy says that a nurse or rcw must the one to press that little print button.
I'd be like Doctor Who, "Ooooh buttons, red flashing buttons! I like buttons and I like pressing them! Let's see what this one will do!" ;D
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I pick my battles.
Who weighs me on the scale is not an issue for me. I just make sure that they write it down correctly.
They ask me what settings I want for the machine (weight to be removed, 20 minute BP check as opposed to 30, flow, ect.) I had to get an order from my nephrologist for the reduced BP time.
The FMC center will provide curtains for privacy if needed.
I stopped griping about the cold temperature when the director of the facility pulled a chair next to me and had a long talk with me about the reasons for keeping it cold (preventing BP falling and people getting sick). I knew him for 40 years and I let it go out of respect and the thought of having to find a different unit to go to as I did once before).
When medicare took over dialysis in '73' the object was to serve as a bridge until you were transplanted and able to return to work and be a productive member of society. They provided a vocational rehabilitation counselor and psychologist to assist you with that goal.
When they started shipping patients to satellite units at the end of the 70's they figured out that there was big money in keeping you on dialysis.
Today, If you can fog a mirror they will put you on the machine and get you in the system.
I don't know of anyone receiving a transplant at my FMC unit for the 5 years that I have been there. Our medical director is not pro-transplant and in fact Fresenius supports lobbyists to vote against the life-long immunosuppressive kidney transplant act.
When I was on dialysis I didn't rely on my center for any information, I went out looking at each transplant center on my own. The mistake I made mostly due to quezy feeling of seeing the lines filled with blood, was not paying attention towhat they did when they said they were doing labs. I thought they were doing the ones for my transplant center at the same time until I got a call from my center. They stopped getting blood from my dialysis center 3 months ago and no one said a word if I stopped wanting to be on the list. A meeting ensued after my tx center called and me being pist off about it. This was yet another learning curve I added to be the person I am today about my healthcare.
I would advise anyone to start the transplant process themselves rather than wait on someone to do it for them.Money drives the dialysis center and the tx center which can be used to ones advantage if done right to get things done.
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Interesting comments about a dialysis clinic not pushing TX. Both the clinic and the Neph continueally asked me if I was on a Tx list. (at least for the first year) Grumpy
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In England they are very pro-transplant and positively push you towards one.
The average person on the waiting list will wait 2 and a half years for their first transplant.
But sadly (two failed transplants) and a whole host of antibodies (six transfusions) that it is very very difficult for me to get any kind of a match.
My only hope is a live donor with as close a match as possible (to facilitate antibody removal prior to transplant) :waving; :waving; :waving;
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Well, following my recent emergency admission to Addenbrookes Hospital and surgery, venograms and new fistula attempt i am feeling quite aggrieved by my treatment.
Last Friday I reached the edge of the abyss. I was ready to stop dialysis.My line wasn't working properly, I couldn't get decent dialysis, I felt ill all the time and had no quality of life. The staff kept nagging me about my potassium, and denying I had any fluid on me... I had had enough. And i broke ...
But this did make them take me seriously and with a potassium of 7.9 and creatinine of 1700, was admitted as an emergency and proper surgeons/renal access specialilists found. I was on the operating table at 7am.
My dialysis line had been put in the wrong place! Into a dead end cul-de-sac vein so all it was cleaning was a tiny teacup full of blood again and again, not touching the rest or clearing any potassium or other toxins. No wonder I felt so rough. But why why why did they not use radiography to check the position of the line when inserted.
At Addenbrookes, they have the machine in the operating room with you. This could have saved me so much grief.
I had also been told I had new usable veins left for further access attempts but a full venogram has showed, not only did I have a suitable elbow vein in my left arm, that both main veins under my clavicles are fine too for future work. And that my situation wasn't as dire as I had been told.
So I am home. New temporary tunneled femoral line whilst elbow fistula hopefully matures. Back to dialysis unit today.
And my potassium down to 3.9
I do feel my unit let me down.
I don't want to look back into the abyss again... ::) ::) ::)
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wow.. at least I can say that my unit does good work where the dialysis is concerned, even if they have to live with stupid little rules which have no real benefit to anybody
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I stopped griping about the cold temperature when the director of the facility pulled a chair next to me and had a long talk with me about the reasons for keeping it cold (preventing BP falling and people getting sick).
This is probably obvious, but you can adjust the temperature at which blood is returned. I suppose you could ask them to turn it up a bit.
I've discovered that I like to have it returned a lot cooler than most people (possibly because I'm on tx drugs, which have kept my temp lower for the last 9 years). If I don't adjust it down, I'm usually sweating up a storm by the time my session is over.
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they won't change that temperature on the machine.. it's set as part of the prescription. My unit does give out heated blankets if you're cold, though.
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If the temp could have been changed, I would have done that years ago when I was on D. Tobad there isn't a portable electric blanket, could have used that then and now at doctor offices.
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Here they don't even supply blankets anymore (infection risk!!!!!)
You have to bring your own in :)
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not only did I have a suitable elbow vein in my left arm, that both main veins under my clavicles are fine too for future work. And that my situation wasn't as dire as I had been told.
So I am home. New temporary tunneled femoral line whilst elbow fistula hopefully matures. Back to dialysis unit today.
And my potassium down to 3.9
Apart from all the other frustrations and annoyances expressed in this thread, I am really happy to read about these good turns of events :cheer: :bandance;
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not only did I have a suitable elbow vein in my left arm, that both main veins under my clavicles are fine too for future work. And that my situation wasn't as dire as I had been told.
So I am home. New temporary tunneled femoral line whilst elbow fistula hopefully matures. Back to dialysis unit today.
And my potassium down to 3.9
Apart from all the other frustrations and annoyances expressed in this thread, I am really happy to read about these good turns of events :cheer: :bandance;
I have to say, now I have recovered from the shock and drama of it all, after EIGHT years of poor access and being told unsuitable for fistulas, to feel this strong buzzing in my elbow where the fistula has been created really does give me quite a thrill. I am imagining (once it matures and I can have temporary line removed) the luxury of a bath once more!!! and maybe a swim! And the thought of decent access, allowing me to have home haemo could change my entire life...
The pot of gold at the end of the rainbow, after some very tough storms!!!
:yahoo; :yahoo; :yahoo;
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I have to say, now I have recovered from the shock and drama of it all, after EIGHT years of poor access and being told unsuitable for fistulas, to feel this strong buzzing in my elbow where the fistula has been created really does give me quite a thrill. I am imagining (once it matures and I can have temporary line removed) the luxury of a bath once more!!! and maybe a swim! And the thought of decent access, allowing me to have home haemo could change my entire life...
The pot of gold at the end of the rainbow, after some very tough storms!!!
Dialysis really changes one's perspective, doesn't it?
"They stopped twisting my ear while smacking me in the face! Now they're just smacking me in the face! Wahoo! Life is great!"
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Indeed
Not only do you learn what is truly important in life...
It gives you a kick up the backside to make sure all your paperwork is in order and stuff sorted...
My hb dropped terribly again after my surgery. 6.5
So I had three units of blood in a transfusion on Monday.
Now my bp has gone scatty from 176/120 to 99/50 and my pulse rate jumping from 70 to 120 beats a minute. At rest.
Making me feel most peculiar ???
I feel like my heart is going to leap out of my throat at times.
they did blood tests and chest xray but can find nothing wring. But it scares me. :'(
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Sugarlump When you BP dropped, did you find other side-effects? Mine took a big drop last week due to internal bleeding in the perennial cavity. I was in the hospital a couple days and they gave me two units of blood. After that I discovered that my eyes won't focus as well as before and I'm seeing a white spot where ever I look. Not sure this will clear up on it's own or I going to have to go see the eye folks. Grumpy
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i would agree that 1 possibility is slow internal blood leak at surgical site . The other would be late transfusion reaction such as a delayed immune response to antigens in the blood. Keep your doctors informed of ANY changes or worsening symptoms. Dont mess around with this.
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Sugarlump When you BP dropped, did you find other side-effects? Mine took a big drop last week due to internal bleeding in the perennial cavity. I was in the hospital a couple days and they gave me two units of blood. After that I discovered that my eyes won't focus as well as before and I'm seeing a white spot where ever I look. Not sure this will clear up on it's own or I going to have to go see the eye folks. Grumpy
Actually Grumpy, I have been complaining that I can't read my laptop very well at the moment. Seems out of focus!!!! :P
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Sugarlump When you BP dropped, did you find other side-effects? Mine took a big drop last week due to internal bleeding in the perennial cavity. I was in the hospital a couple days and they gave me two units of blood. After that I discovered that my eyes won't focus as well as before and I'm seeing a white spot where ever I look. Not sure this will clear up on it's own or I going to have to go see the eye folks. Grumpy
Actually Grumpy, I have been complaining that I can't read my laptop very well at the moment. Seems out of focus!!!! :P
I was like that after my surgery too, but I blamed it on the pain meds. I keep a magnifying glass next to the computer to help me read things sometimes, but I've been doing that for a long time
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I've decided that is wasn't the meds, but the drop in BP that cause my eyes to change. Now that the BP is back up and stable, the eyes haven't changed, so i guess it to the eye doctors to see what is wrong. Grumpy
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I recently spent £208 on new glasses yet I can't see the laptop well with them. They are supposed to be varifocal but I find myself looking over the rim a lot to figure out small print! :urcrazy;
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If they want to waste staff time weighing me fine. As long as they don't try to tell me haw much to take off.
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The latest is our critline machine has been at the menders for a month so no-one can check their dry weight.
As I have had surgery and put on weight from high dose steroids, I really have no idea what my dry weight is anymore, so when I fill in the form I always put a question mark!
They don't like that much!!! ;D
So get it mended then!!!
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I lost weight after my surgery, and I don't appear to be putting it back on. I know that the nurses are allowed to go up or down half a kilo without doctor's approval, so they've been bringing it down, but I think it needs to be made official, because I think it needs to go lower
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Still no critline :thumbdown;
Doc has decided to take entire August off!!!! :thumbdown;
My line is slightly red and sore today, not good news. But they have done linelock blood tests, ordinary blood tests and swabs and put me on IV antibiotics for 2 weeks in a pre-emptive strike.
So fingers crossed that sorts it! :thumbup;
Last thing I need now is to get another line infection. :o
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Oh buggerdy, I'm keeping all fingers crossed here, and I hope the antibiotics nip the whatever it is in the bud.
Good luck honey, and lots of love, Cas
:flower;
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My center has a scale that allows us to print our weight out. Although it doesn't always have paper in it so we have to write it down. The staff helps/supervises certain people with pre and post weights to verify them but not everyone! Making everyone do it would irritate me. I don't think they should be making you do it if your weights have been fine.
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I stopped griping about the cold temperature when the director of the facility pulled a chair next to me and had a long talk with me about the reasons for keeping it cold (preventing BP falling and people getting sick).
This is probably obvious, but you can adjust the temperature at which blood is returned. I suppose you could ask them to turn it up a bit.
I've discovered that I like to have it returned a lot cooler than most people (possibly because I'm on tx drugs, which have kept my temp lower for the last 9 years). If I don't adjust it down, I'm usually sweating up a storm by the time my session is over.
We have heat panels above each chair and heat in the back of each chair. Plus I bring a blanket. A thin one in the summer and a sherpa wool comforter in the winter!
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Still no critline....
On two weeks of antibiotics iv at end of dialysis
Line is okay but still quite red/pink around it.
No results back from line locks or swabs as yet.
Fingers, toes and everything else crossed.
My fistula is four weeks old today :-*
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Every thing is crossed, and remember your fistula exercises, they work.
Love, Cas
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All swabs and linelock tests came back clear!!!! :2thumbsup;
Keeping me on antibiotic course just to be sure
Fistula is still buzzing along happily (I have a stress ball for exercises)
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Glad to hear all that good news
:bow;
Love, Cas
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Lousy dialysis session today.
45 minute wait in the corridor as machine not ready.
Get put on machine and the arterial line sensor not working.... they tried a flush and reversing lines (I kept saying it's not me it's the machine)
Eventually they came to same conclusion so had to take me off, reline another machine and set it up...
Two hours later, less than 5 minutes dialysis.
Because our centre closes at 6pm!!!! they cut short my time and the amount of fluid i could take off. Not a happy bunny for this to happen on a Monday.
Start the week off badly and play catch up all week...
I hate it when machines break down GGGRRRRRRRR :Kit n Stik;
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Lousy dialysis session today.
45 minute wait in the corridor as machine not ready.
Get put on machine and the arterial line sensor not working.... they tried a flush and reversing lines (I kept saying it's not me it's the machine)
Eventually they came to same conclusion so had to take me off, reline another machine and set it up...
Two hours later, less than 5 minutes dialysis.
Because our centre closes at 6pm!!!! they cut short my time and the amount of fluid i could take off. Not a happy bunny for this to happen on a Monday.
Start the week off badly and play catch up all week...
I hate it when machines break down GGGRRRRRRRR :Kit n Stik;
Thats really lousy. They should have other back up machines ready and able to be on line in 15 minutes . Not good on a Monday after missing 2 days . Any chance you could go tommorow to make up for it? Its probably too late in England as you are 6 hours ahead of eastern US time.
Be careful of your fluids the next 2 days.
Really sorry this happened. Hang in there.
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No space today (I dialyse at a tiny satellite unit with 5 chairs!!!)which makes rearranging sessions really difficult.
As you say, will have to be very careful fluid wise til Wed.