Hi Update from jbell

[jbell]

Hi Liz how awful to be told you would only survive 6 weeks without dialysis. I was told this awhile ago but for me I wasnt surprised as one I just assumed that once you were on it it would have very bad consequences . I am so glad to hear that it is going a bit better for you now. Do you feel ok between sessions ?, are you getting out and about ? I am suffering from chronic dizziness which lasts most of the next day, but I have heard my fellow crew ( my nickname) that this is a common problem. I do hope things continue to get better for you......Jan

Hi Wagolyn thanks for your post. For a minute there I had forgooten we are not in the slightest average people . Dialysis is not going too well, though my flow is never up to what it should be, and the dizziness persists. I have had to change back to my old anti-depressants which dont work so well on neuropathy pain as after nearly 4 weeks with out sleep I had had enough. I had gone to my gp as you had advised quite wisely he put me on sleeping tablets to try and combat the problem. But after 6 days with them not working as well I gave up, my renal consultant agreed. But I am seeing him again on tuesday so maybe he will suggest something else. I had my big bloods done on thursday and for the first time my URR was there, now it was posted as 0.75, do you think that means 75%, or is that terrible ? I think it must be ok as all my other results are fine if you know what I mean I am full off the cold and have gone so deaf. I am annoying Mr B constantly as most of my responses are "What ?". I am too get my ears syringed on my birthday nest week. Hopefully I will be able to hear by the evening as our plans have changed and now us, 2 friends and our daughter and her partner are going to a French restaurant for a meal. Hopefully there will be something on the menu I can eat Shame I will be choked with the cold for this weekend away. Hope you are ok and have no nasty colds, thats winter for you !....Jan

Dotty where are you ? Hope things are ok and it is work keeping you away from us. It would be really good to hear from you, I am now going through a shocking pink lipstick phase x ......Jan

[wagolynn]

Hi jbell,
Blood results, see the tread RPV I stuck a note on there.

It would seem your unit just except dizziness if others are complaining, are you very thirsty the day after? The dizziness suggests they are removing just a little bit too much water, do mention it to your consultant make sure you point out how it is affecting you.

Lets hope the syringing doe's the trick, it's a bad sign if the put it in one ear and it runs out of the other.

Have fun...

[Dotty]

Hi all,

It's nice to be missed. I'm ok just constantly tired. I Am finding the morning after dialysis a real struggle, headaches and tiredness, getting up for work is a major battle. Dialysis seems to be going ok, the nurses have agreed to keep me at 66kg which does help, any lower and the awfulness persists although the machine has been doing lots of bleeping..something to do with the Venus pressure, I believe, they have a fiddle with my arm then it goes ok for a bit.
My fistula has been checked and the tesio can now be removed. So I'm waiting for the appointment, which will mean a trip to good ole Oxford.

I'm sorry to hear that you are still having problems Jan, I bet you must be totally fed up. Hot pink lippy sounds fab, last time I changed from red I got major hassle fom family and friends cos "I didn't look like me"!!

We had a great weekend away at Lyme Regis, the weather was perfect. We went to 6 different beaches and walked miles, it felt like a proper holiday even if it was only a couple of days.

Now I'm trying to find the energy to finish peeling a huge bag of pickling onions...arghhh

Dotty xx

[wagolynn]

Hi jbell,
Thinking about your dizziness (and all the other patients) - When dialysing do you all sit upright say, as in on a chair or do you lay with your feet at about the same height as your bum. (oh you naughty man talking about bums )

I ask this because it may help (not true, I like bums ), my thinking goes as follows. When sitting in the normal position the circulation virtually stops in the lower leg. (Blood is pumped by the heart into legs but to get it to return to the main circulation we rely on our leg muscle's flexing which drives the blood back out through some one way valves in our leg veins). Extracellular fluid {the fluid that is casing the puffy ankles etc.}, gets pushed back into the main circulation in a similar way but through the Lymphatic system [a sort of drainage system separate to our blood vessels]. When sitting still these systems cannot work (hence all the fuss about blood clots on long flights). So, if my understanding of our physiology is correct, we should always have our legs up when on dialysis, because we want the maximum amount of blood being dialysed.
The nurses in our unit don't seem to be bothered so I am not 100% certain about this, I have looked into the circulation and lymphatic system and it all appears to fit. I do know, if I put my legs up I get a better clearance.

Just a thought... has anyone any thoughts to add?

[jbell]

Hi Dotty it is good to hear from you. Sorry you are still so tired, is your hb and iron levels ok ? My hb had come up but has now dropped a little so the good old aranesp is to be increased again. It sounds like your weekend away was great and quite energetic. We have just been away for the last 2 weekends, which has been a bit tireing. I try to go away everytime Mr B is home but we had to bring one of our trips forward as he is having yet another hernia op. He had one in Feb but it hasnt worked. It means he will be home for awhile so that is a bonus for having to have another op I hope you feel better soon...Jan

Hi Wagolyn you naughty man, bums really . I have to say I normally sit or lay back a bit with my legs up levelish with my erm...bottom. But I get bad cramps near the end and then have to put my feet down on the footrest as that helps. The dizziness now only seems to be bad in the evening after dialysis and I am fine the next day. Though I have a feeling my bp is high the day after but I no longer take bp meds through choice. I am glad to say my neuropathy pain had subsided but sat they took some extra fluid off of me, only about 1500 rather than my normal 1300 but that set the pain off at night again. I have to say my bvm is usually quite high but it is awful if they try and take more off. I am going to the vascular labs to get my arm scanned for my fistula next Monday. I am very nervous about trying for a fistula again but I know it is the best thing for me. I was really saddened this week as a lovely guy I met in hospital last time I was in passed away, he was also a diabetic. Then a friend who was my renal buddy for awhile who had ha an extremely successful kidney/pancreas tx about 5 years ago also died, her kidney and pancreas failed and the results were her liver failed as well due to the complications of a pancreas failing. This happened a few months ago and she died at the weekend, she was younger than me and has a young family, I feel really shocked. I know these things happen but when you know the person it is very thought provoking. I am sorry to end on such a sad note.....Jan

[wagolynn]

Hi jbell,
Good to here from you.

It is sad when people you have got to know die, somehow because we can understand a bit more about what they were battling with makes it worse.

It may be worth suggesting, if you need more fluid off can they extend the time in proportion. One thing that 'might' help the cramp, when on dialysis, is to contract your calf muscles about every 15mins a few times (flex your feet, from the ankle, up and down). As I say it may help...

As to the fistula, I think there are several ways around your problem, so no need to worry.

Enjoy having Mr jbell around, lets hope it all goes well for him.

[wagolynn]

Hi jbell,
If I have read your last post correctly, I notice you have stopped your BP medication. That does not sound good, was there a reason and is your GP or consultant aware? High blood pressure will rapidly kill off any remaining kidney function you have that is apart from all the other usual problems.
Take care.

[Dotty]

Hi Jan and all,

How is everyone? Are you feeling better Jan?

I had another fistula blow on Monday, as well a being upset by it the nurse didn't help by making me feel as if it were my fault. After a sleepless night, where I'd got all worked up and in a dither I decided that the only way I am going to be able to cope is to take control.

I asked the nurses on Wednesday when I could do my own needles, again I was made to feel that this was not the done thing, and that I couldn't do it for a while yet as my fistula is not mature enough. Luckily my named nurse was on shift on Friday and I told her what had happen and that I wanted control. We discussed working out where to needle and hygiene then she said, if I wanted, I could needle there and then. It was great, so much easier and less painful than I was expecting. I felt so much better just having that little bit of control. It's also a step closer to home dislysis.

I still feel really ill on non diaysis days but there doesn't seem to be anything I can do to mitigate how I'm feeling so I just need to find away of dealing with it!

Hope everyone is good.
Dotty x

[jbell]

Hi Wagolyn and Dotty, sorry I have not been around for awhile I have had some problems. Not to do with dialysis I am glad to say. That is going well, still cramp up even with the wee exercises you kindly reccomended Wagolyn. So far as my bp meds go my consultant knows and hasnt disagreed yet !! . I am probably going to be offered a morning slot after xmas if transport can be sorted out. So far I keep being offered one way transport which is no good, but it is down to money apparantly. But I cannot get there or back without transport so I am hoping it can be organised. The morning shift are quite a lively lot and it would be good to get it over with earlier in the day. I am so sorry you were having such trouble with your fistula Dotty, I am glad you have sorted it out and feel more in control. It is a shame you feel no better on non dialysis days though. I feel better the next day and my energy doesnt run out so much as it did before. I had to have an operation this week. About two weeks ago I lost all of my sight gradually over 5 days. I went to eye clinic as an emergancy and the dr said the scarring behind an old cataract op had grown so thick I could no longer see through it. They took me in this week and lasered it away, they did it twice and I was so releived when my sight came back. It was very scarey and worrying at the time. It was good Mr B was here, though he had his op the day before I had mine , so we are recuperating together , which is fun and games We are off to the xmas lunch for the dialysis unit this Sunday, is anyone else going to one ? There is a raffle and I am well pleased with myslf I managed to raise bang on £100 for the patients comfort fund, it was a case of annoying all friends and family into buying tickets , really they didnt mind. I have my fistula pre op assesment on the 19th of Dec which I hope means no op before xmas which is good news. Though I am suprised as my surgeon said he wanted to do it before. Well hope you are both well and one last thing, I have lost 9kgs of fluid since starting dialysis. Which I am delighted with, it is nice to know it wasnt all fat !! Take care....... Jan x

[wagolynn]

Hi jbell,
I am very pleased to see you are back I was beginning to wonder...

Getting your sight back must have been wonderful, I am so pleased it worked out OK in the end, it must have been frightening as it was going.

Is Mr jbell sorted now as well or still 'on the mend'. I suppose that means haggis hunting is off for a while or was it all timed to be in the closed season.

Looking at the people I see at the unit on hemo, some feel better the day after but just as many don't with just a few saying they feel better on third day (day off) it appears to be pot luck. However if you have lost 9kg of fluid I would say you are bound to feel better, has it had any effect on your BP? Has your dietician made any comment about the weight loss.

The transport thing must be a worry, I think in Suffolk (next county south of Norfolk) patients pay or make a contribution for transport unless they are in receipt of a state benefit, I am not sure how their local health authority gets away with it, 'free at the point of use', the politicians keep saying

I have at last got an ENT appointment at the end of the month, to find out if I will be able to hear again, at the moment I hear enough through one hearing aid to know someone is talking but I have to see their face to attempt to understand just what is being said. Mrs wagolynn was trying to tell me something the other night, in bed, I could not make it out so I had to say, "it's dark wait until I put the light on".

[jbell]

Hi Wagolyn

Getting my sight back was wonderfull . I can really sympathise with your hearing loss, I think that is probably much harder to deal with. Evan with no sight I could talk to someone and understand them but at one stage after a bad cold I lost most of my hearing and I found it so difficult and was so anti-social I really hope they can help you at ENT

I have never been asked to contribute to help with my transport. Maybe I should offer if it means I can switch to the morning shift. We had a lovely xmas lunch at the weekend with some of the other patients and staff. Mr Bell went with me and seemed to enjoy it. We had quite bad sleet when we came out from the meal and the weather is now freezing

Mr Bell is very sore . His op was a lot bigger than expected and I think he may well be home for awhile. No hoovering allowed, what am I going to do Hoover up I suppose

Do you feel better the next day after dialysis ? My URR was .77 this week, so I think I am doing well. But I have noticed like you that a lot of people do not feel well ever which is an awful shame. My line is still suffering from blockages and is usually sticky. I have to say being a satellite unit seems to not only mean no dr's being available but no dieticians and no diabetic nurses visiting either. I saw the dietician once when I was in Ninewells in August, she gave me some leaflets about pottasium and that was about it. No-one has mentioned the fluid loss , they just alter my dry weight. My bp comes down very low whilst on dialysis, I faint a fair amount of times. For the first time ever last week they managed to get my BVM ? down to 93%, so I was pleased with that. I am usually quite high evan after dialysis.

Enough medical talk, poor MrsW, it must be difficult for her as well. Especially when she may well be trying to give you housework instructions .......Jan

[wagolynn]

Hi jbell,
Pleased to see the party went OK and you both enjoyed it, sorry to hear about his pain, he will have to hit the painkillers. I suppose driving is out for him as well as, 'being in charge of a vacuum cleaner'.

Transport - I would not offer to pay, the usual problems with changing times is, availability of machines, and staffing levels, not transport. Offering to pay, I think, opens up a big can of worms.

Most days after dialysis I feel a bit washed out (pardon the pun ), the day after that is probably my best. After a week end I am ready for dialysis.

Being at a satellite unit does feel a bit isolated but they (the nurses) should ring if they think you need help or they cannot answer your enquiries.
I/we (Mrs Wagolynn) have telephone numbers for the consultant and dietician and we use them, as I have said before, I also use my GP.
I (all patients) see the dietician once per month (whilst dialysing) after the blood results are out, and we also see her whenever we see the consultant.
Our consultants trainee, in theory, visits about the time the bloods are out but they are only there for 3 months (I think) so, so far I have not found them a lot of use. In theory anything said to them should be passed on to the consultant but I don't think it really works.

Re BP on dialysis - that suggests they are taking fluid off at too higher rate, it would be better to extend your time, are you on restricted water intake?

Line blocks are out of your control, they should be adjusting your dose of anticlotting agent to prevent this, it can be dangerous as it is.
are they still blocking at the start or is later in the session?

Look after each other, we trying to learn synchronised coughing, it's very difficult...

[jbell]

Hi Wagolyn thanks for reply.

In answer to your question I am not on fluid restriction as I still pee a lot. Ibelieve it is harder to judge your dry weight when you still pass urine ? Do you think if they are taking off too much fluid hencu the passing out, that I should drink a bit more fluid ?

You are quite correct the staff can email or phone (if he is available) if there are any problems. The staff nurses alter my dry weight themselves, I take it this is normal ? As for my line blocking it is always at the start of dialysis. I have the clot clearing drug put through 3 times now, once via a drip and twice straight into my lines at the end of dialysis. They just keep banging on about me getting another fistula, but I cannot make that happen any quicker than it is.

I am having terrible problems since last thursday. Either after or 2/3rds of the way through dialysis I get the worst headache I have ever suffered from and then I vomit and get stomach cramps. The feeling of nausea lasts till the next day, the headache is murder and my stomach stays upset till the next day. I am having to take really strong painkillers to knock myself out to get rid of the headache. I cannot sleep until my stomach cramps calm down, is this at all normal ? I have been fine up until now. The travelling home on the bone shaker (ambulance !!), with the heat on makes me sick now as well. Lucky MrB is actually driving and picking me up, but he cannot do that forever.

Anyway must go now, take care.... Jan

[Dixie1]

Hi all

I have been following your posts jbell and Dotty (with sympathy) and thought I'd drop a short line, as I haven't said hello in a while. You both seem to be having a pretty rough time, I really feel for you. I am still bumbling along with a reasonable amount of function, so hopefully that continues for a while yet. Not looking forward to perhaps having to deal with some of the stuff you both (and others) have had to deal with! At the moment, I am hoping to avoid it. At my appointment last week my consultant said "I think it's time to get the ball rolling", in terms of the work up on my husband as a prospective donor. I am well aware however that that can take donkeys years, which is not a problem really for now as, as I say, my kidney function is still quite good. So watch this space......

For the first time ever, Christmas preparations have felt a bit of a chore, rather than a pleasure, this year. Definitely starting to feel the affects on the energy front and not quite as enthusiastic as I normally am!

[wagolynn]

Hi jbell,
Taking fluid off - According to the consultant I should not be having any fluid off yet but soon. However the unit nurses are always trying to take some off, and in the early days they did, so I learned what was what on the machine so I could see when they tried and say no.

There will be a point where the patient is still peeing but also accumulating water, by the sounds of your posts you must have reached that point.

Just to clarify, (should anyone know better please shout) as I understand it, there are two undesirable effects of taking fluid off, one immediate and one kicks in later both are linked to dehydration.

The immediate effect of dialysis is loss of blood volume. This can happen because dialysis can only take fluid from our blood, yet we have fluid in our cells, and fluid that has escaped from our cells, and is outside the cells. Fluid outside cells should be removed by the Lymphatic system (returning it back to our blood to be removed by the kidneys) but the Lymphatic Systems needs us to be taking exercise to work, and of course the fatigue effect of kidney failure tends to make us less inclined or un-able to exercise nor are the kidneys removing excess fluid from the blood. It's a vicious circle.

So, what is dialysis doing? Dialysis removes fluid from our blood stream in the expectation that (via the capillaries) fluid will be returned from the cells. The fluid outside cells (extracellular fluid I think is the medical term ) in our case can only get back by defusing through the cell walls, when the cell has given fluid back to the main blood stream the cell can then take in fluid and pass this fluid back into the main circulation. All this shifting around of fluid takes time, for the average person, this transfer goes along at about 0.6l per hour. NB. it has been demonstrated that patients who exercise (usually peddle a modified gym bike) during dialysis have fewer side effects and can remove fluid at a higher rate.

Right what does this all mean? The excess blood volume can be quickly and easily removed (but no one knows how much is excess for you), after that has gone, if we take fluid off faster than 0.6l per hour (average person) we will inevitably reduce blood volume too low. If blood volume gets too low, we tend to black out, due to the brain being starved of oxygen and we will tend to get cramp, (normal treatment for this is to lay patient flat and give them a drink). Also lack of Sodium, is said by some, to be a factor in the cramp (sodium is dissolved in the fluid taken off, this should be replaced by the machine but it has to be set to the correct level).
I cannot find a plausible explanation for being sick but if you feel dizzy then being sick is a 'normal' reaction.
The cramp, headaches, dizziness, and feeling absolutely shattered, the day after are again 'normal' reactions to dehydration.

I read, some units claim a 65% success in using large doses of vitamin E to ward off cramp.

All the dialysis machines I have looked at have facilities to allow Profiled Fluid Removal, (the rate that fluid is taken off can be varied through the treatment) so the machine can takes fluid off fast at the start, (fluid in the blood) then the rate is dropped to about 0.6l per hour, to give extracellular fluid (clever dick ) time to defuse into the circulation. The unit I attend do not use this facility.

Sorry it's such a long bit but without it all it doe's not make any sense, try reading it a couple of times and see if it helps you to understand where your treatment may be going wrong.

Yes, looking at this and other forums, consultants do not appear to want to be involved in the actual dialysis process, so the nurses are left to make critical decisions like dry weight etc.

Shout at me if this doe's not help...