Hi Update from jbell

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wagolynn
Posts: 1362
Joined: Thu May 23, 2013 2:49 pm

Re: Hi Update from jbell

Post by wagolynn »

Hi jbell,
I see I left out the other reason for being or feeling sick during or after dialysis, dialysis makes changes to blood chemistry which can make patients sick or feel sick. Patients are expected to eventually acclimatise to these changes and the sickness stops.

If it is a problem, it usually is, contact your GP, there are many anti-sick medicines available, it may be necessary to try several to get the right one for you. :D
jbell
Posts: 389
Joined: Sat Apr 14, 2012 7:47 pm

Re: Hi Update from jbell

Post by jbell »

Hi Dixie, it is lovely to hear from you. It has been awhile. I know you may be feeling a bit bleak when you read my posts, but not everybody has such a bad time I hope ! It is good news about your husband and with any luck (and a keen consultant ), hopefully you can avoid the dialysis stage. You seem to have a good amount of time to get everything organised, so I really hope that works out for you. I know being exhausted takes the shine off of events as it's a case of putting on a brave face and just getting through things as opposed to actually enjoying them. If things get too difficult, delegate it's the best way ! Hope you have a lovely christmas, take care...Jan x

Wagolyn I have read your post once and yeas it is complicated but it is making sense. I have been told for years due to diabetes I have really leaky cappileries, but I thought that was blood idiot that I am. But now I know more about it all then I presume there is a high chance that water is leaking out as well. I am going totry really hard to do some exercise, I use every excuse in the book not to. My new one being I have no time, I permanently feel I am catching up and I seem to be trying to fit 7 days into 4 !. I am attending hospital 6 days a week for another 7 weeks as I go to dermatology for treatment 3 times a week as well. It falls on my non dialysis days and as I said before I cannot change shift because of transport problems. But again that is another excuse :roll:

I have to say my last 2 sessions went better, I take a strong painkiller half way through and that seems to stop the headache in its tracks. I actually think it is the headache that makes me sick, because it is after that starts I am sick. I actually feel really well the day after dialysis, which I presume is the desired effect. It tends to be a bad evening and a worse night on the same day as dialysis , then I wake up brand new apart from residue tiredness from a bad night. I obviosley do retain some fluid as I swell up slightly every day, I can go into the unit and I am barely over my dry weight but my bvm is so high and I am swollen. The nurses decided on thursday this week to take far more off me than my weight was indicating and I was fine. But then on staurday when they tried the same as I was more over my dry weight than on thursday it didnt go to plan. I started to faint whilst on, it is a really complicated business ! That or I am just being plain old difficult :twisted:

Mr B is not too bad since his op. Though I have to say he sleeps far more than me these days , how wrong is that ? :shock: Well I am off now, take care, my regards to Mrs Wagolyn, how she puts up with living with such a clever cloggs I do not know :wink:
Age 48
CKD diagnosed 2010
Diabetic chronic complications since age 12
Registered Blind 2000
Need kidney/pancreas tx
Egfr 12
wagolynn
Posts: 1362
Joined: Thu May 23, 2013 2:49 pm

Re: Hi Update from jbell

Post by wagolynn »

Hi jbell,
I am pleased to see Mr jbell is on the mend. :D

I think I would wait for things to calm down a bit then think of exercise. :oops:

What are their reasons for taking so much fluid off or taking it off too fast?
AmandaClare
Posts: 658
Joined: Tue Sep 18, 2007 1:58 pm
Location: London

Re: Hi Update from jbell

Post by AmandaClare »

Duker5 complained on this forum of migraine after dialysis. It just struck me because you think the headache and the nausea are linked, which is a common pattern in migraine.

As a sufferer I'm very sympathetic to anyone who gets them, or other v nasty headaches.

I'm glad you're finding a way to manage it now, anyway.
Alports Syndrome
Dialysis 1986, aged 14
Transplant 1988, still going strong!
Baby boy 2010
wagolynn
Posts: 1362
Joined: Thu May 23, 2013 2:49 pm

Re: Hi Update from jbell

Post by wagolynn »

Hi jbell,
I just had a thought - if the consultant/ unit staff do not know you have stopped your BP medication, they will interpret the high BP as being excess fluid. This might explain them taking too much fluid off. :idea:
chrisb
Posts: 275
Joined: Thu Jul 19, 2012 4:57 pm
Location: gloucestershire

Re: Hi Update from jbell

Post by chrisb »

forgive me for just jumping in and this may have already been suggested.

headaches - I had terrible headaches afterwards where all I could do was go to sleep.

they changed my dialysis from HDF to HD - no more headaches.

again apologies if already suggested.

I rarely read this forum nowadays as I find it very depressing as it seems it has evolved from a upbeat helpful forum into a moaning negative one. I pity new readers who are looking for positive but truthful input :)
jbell
Posts: 389
Joined: Sat Apr 14, 2012 7:47 pm

Re: Hi Update from jbell

Post by jbell »

Hi everyone, thankyou all for your replies.

I am pleased to say I have not had a headache for over a week, and yesterday I took no painkillers half way through !! :D It did feel very much like a migraine, chrisb I have no idea what HDF is ?
Wagolyn my consultant knew I wasnt taking my bp meds, I check my own bp everyday and depending on how it is I either take or don.t take medication. It seems to work most days :shock:

Chrisb it is nice to hear from you, it is a shame you are not liking the forum anymore. I still find it really helpful and friendly. I think sometimes it is one of the only places one can talk openly and honestly and get truthfull answers. Plus it is good to have a moan where people understand. I hope you are getting on fine, let us know.

I want to wish everyone a happy christmas and will speak after New Year, don't be partying too much :mrgreen: ....Jan
Age 48
CKD diagnosed 2010
Diabetic chronic complications since age 12
Registered Blind 2000
Need kidney/pancreas tx
Egfr 12
wagolynn
Posts: 1362
Joined: Thu May 23, 2013 2:49 pm

Re: Hi Update from jbell

Post by wagolynn »

Hi jbell,

Hope your Christmas is going well, thanks for the good wishes.

HDF - a form of Haemodialysis. The process is setup so that the dialyser membrane is forced to act as a filter*, this enables extra water to be taken off but the excess removed is replaced by saline so the patient is not dehydrated. The point is, more water soluble toxins are taken off than 'normal' dialysis.

*Normally the removal of toxins is done by osmotic exchange. He's at it again... :D
jbell
Posts: 389
Joined: Sat Apr 14, 2012 7:47 pm

Re: Hi Update from jbell

Post by jbell »

Hi Wagolyn thanx very much for your clever clogs reply :wink: , it was very interesting to find out what it meant, I wonder why the staff at the unit or the dr's don't mention other options ? Unless of course it is not available at all units.

Have you and your family had a good xmas ? We have had a lovely time and don't seem to have stopped to draw breath and no doubt it will continue into the New Year.

I have not had a good dialysis for a week now. I don't mean painful or anything like that but it has not been able to work. My line has stopped working just about completely and I have only managed a flow of 180 for the last 2 visits, plus yesterday they couldn't take any fluid off of me. I think this was because I was having an infusion of "Kyranese" (not a clue how to spell this). That is my fourth time and the hospital are trying to get a quick apt to get my line sorted out, I presume they mean cleaned ? as it is a minor procedure at Ninewells as a day patient I hope :shock: . Hopefully that might push my fistula op through as well. I hope to hear something tom at the unit. I am dreading my weight, though they know nothing was taken off me yesterday. Surely I cannot turned into a baby elephant by tom ? :mrgreen:

Have a peaceful or rowdy New Year everyone.....Jan x
Age 48
CKD diagnosed 2010
Diabetic chronic complications since age 12
Registered Blind 2000
Need kidney/pancreas tx
Egfr 12
wagolynn
Posts: 1362
Joined: Thu May 23, 2013 2:49 pm

Re: Hi Update from jbell

Post by wagolynn »

Hi jbell,
We had a nice quite Christmas, it was/is very nice. Pleased to see you enjoyed yourself. :D

HDF - I think all units will eventually, it is not new but the world conference on Kidney ailments agreed a higher Kt/v (clearance) would be a benefit to patients world wide. HDF is the simplest way to get there, many of the latest machines make it a very simple thing to do, it's awkward on older machines. :wink:

Blocked Lines - I think they will have to change them, there are ways of cleaning them out but I would expect they will have tried these at the unit, thinking about it, satellite units probably are not allowed to try the more aggressive methods. :?

Best wishes for the new year, and anyone else who reads this. :D
jbell
Posts: 389
Joined: Sat Apr 14, 2012 7:47 pm

Re: Hi Update from jbell

Post by jbell »

Hi Wagolyn and everyone, happy New Year to you all :D

Wagolyn I was taken into Ninewells on Tuesday as my line packed in all together. Then on wed they rewired my line and I got a couple of hours decent dialysis. I got home last night but the sedation made me a bit sick so I ended up in bed by 10pm :shock: But on the good side I feel a bit better today apart from a bit of soreness. So fingers crossed dialysis tom will go well. Plus we have managed to celebrate New Year all day :!:

So glad you had a good christmas, I cannot believe it is all over once again. It is Mr B's birthday tom so our daughter and her partner will be taking him out for a curry whilst I am at the unit. Well I had better go, just one question. Do you or anyone know why a line would fail like that ? Because when I asked at the unit and in hospital n9body seemed to know. I worry it might happen again. Do you have HDF available in your unit ? I might ask at mine, well maybe I will ask my consultant when I see him again.
Take care ....Jan
Age 48
CKD diagnosed 2010
Diabetic chronic complications since age 12
Registered Blind 2000
Need kidney/pancreas tx
Egfr 12
wagolynn
Posts: 1362
Joined: Thu May 23, 2013 2:49 pm

Re: Hi Update from jbell

Post by wagolynn »

Hi jbell,
I am pleased to see you had a good new year, in the end. :D

There always a very small risk lines will block but if the correct procedures are followed it is unusual. However, if the line is not flushed at the end of a session correctly and filled with heparin, or whatever they are using, clots form. Once a line has clotted, there is a risk that a clot gets a good bond onto the tube (inside) and is then ready to encourage clot formation each time that tube is used, the blockage getting worse each time. Sometimes, if dealt with early, a tube can be cleared using other anticoagulants but I think only highly skilled people can do this (there are risks). These skills are not usually available at satellite units. :?

happy birthday to Mr jbell.

Happy new year, lets hope things settle down for you.
jbell
Posts: 389
Joined: Sat Apr 14, 2012 7:47 pm

Re: Hi Update from jbell

Post by jbell »

Hi Wagolyn thankyou for youe message. I am off into Ninewells tom and getting my knew fistula made on friday. I should get home on saturday if my blood sugars stay under control. They tend to go extremely high after any sort of operation which can help to get any sort of infection. Hence that is why I am in for 3 days. There seems to be a bit of conflict at the hospital my vascular surgeon has put me on the renal ward evan though it is a vascular op. But he asked where I would prefer and I obviously asked for the ward where I know a lot of the staff. I was only in there last week getting my line rewired, so it is like I have never been away !

I did get my lined cleared with Eurakines ? Sorry that is how it sounded but I have no idea how to spell it. This had to be authorised by the ward at Ninewells before a senior staff nurse could do it, is that what you were talking about ? I know it can be dangerous and after the 4th time they said no more and replaced the line. I have to say yesterday was my 2nd session since it was done and my lines had to be reversed, I was a bit nervous. I am changing shift tom, so it is 7am in Perth for dialysis and then admission in Dundee to the ward at 2pm. A longish day I think.

Has anyone heard from Dotty recently ? I was wondering if I had missed any posts from her ? Anyway if you are still looking in on the forum Dotty it would be great to hear how things are with you.

Anyway hope you are doing well Wagolyn, I shall be back next week, New year, New fistula, a successful one hopefully this time ! Take care.... Jan :)
Age 48
CKD diagnosed 2010
Diabetic chronic complications since age 12
Registered Blind 2000
Need kidney/pancreas tx
Egfr 12
wagolynn
Posts: 1362
Joined: Thu May 23, 2013 2:49 pm

Re: Hi Update from jbell

Post by wagolynn »

Hi jbell,
Best wishes, I will keep everything crossed. :D
Dotty
Posts: 160
Joined: Tue Mar 25, 2014 7:16 pm

Re: Hi Update from jbell

Post by Dotty »

Hi Jan and all,

I hooe everyone had a fab Christmas.
Jan I'm sorry to hear that things haven't yet settled down for you, you really are going through the mill.
Good luck with your fistula op.

I am just plodding along, the hime machine will not fit in my bedroom so I'm having to adjust to having it in the conservatory, which I didn't want. But it's preferable to having to go to the hospital. So we will find a way to live with it if we have too. I can see me making a cover for it to hid it away when friends come for BBQs.

I hope everyone has a happy , healthy and prosperous 2015

Dotty xxxx
47 years old.
IGA Nephropathy diagnosed May 2013 with eGFR of 22%
PD dialysis started May 2014
3rd PD catheter fitted and failed July 2014
Hemodialysis started July 2014

Red Lippy and PMA (Positive Mental Attitude) gets me through each day!
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