Burning sick feeling

[Charlene_Coxhead]

Hi all

Hope you are having a good weekend and feeling ok at the moment.

Need some advice, in stage 5 CKD and currently not on dialysis with gfr of 8 at the moment, was previously 7. I have a fistula which was already in June but having to have a narrowing sorted on Wednesday. My consultant has delayed dialysis in the hope of a transplant as i suffer with low blood pressure.

That's my back ground....

I'm have a burning feeling in the back of my throat and feeling sick all the time, and although I use to get this now and again it's every day and seems worse at night. Feel like I'm fighting being sick every day.

I'm guessing this is because my kidneys are really struggling and toxins are building up and dialysis will be starting soon.

What I'm after is your tips to get me through this, will to try anything at the moment.

Thanks

Charlene

[Hidden]

I'm not yet on dialysis but I visited the local center and spoke to a couple of people there and one of them had a similar situation to what you just described. I had to go back and check my notes and what they said was they had to sleep sitting up for a couple of weeks until they were able to start dialyzing. Hopefully, there will be others who respond who have firsthand knowledge that will be more helpful. Best of luck.

[Charlene_Coxhead in reply to Hidden]

Thanks for the response Mr kidney. Tried the sitting up on pillows and it didn't help but did only try it for a few hours so maybe I'll give it another go as it's turning into a long night. Thank goodness the clocks go back tonight

Charlene

[Hidden in reply to Charlene_Coxhead]

If you are in the U.S. next week is when the clocks go back an hour, not tonight. Sorry to ruin your hopes. By next week you'll be sleeping so well that you'll really enjoy the extra hour.

[Charlene_Coxhead in reply to Hidden]

In the UK so ours changed last night. I watch every hour plus the extra one lol

[Mgt8]

Hi

I'm stage 5 too....started dialysing after having an opp to widen a narrowing in my fistula as well....

Before dialysing I also felt very sick and had regular indigestion. I bought my self a wedge shaped pillow so I didn't have to lie flat at night and that helped.

Something else I find helps is a ginger drink which I take small sips of when I feel iffy and it seems to settle my stomach.

Did try indigestion tablets but they didn't do much and I'm not sure if they didn't do me more harm than good.

Hoping you find a way round it...

Margaret

[Charlene_Coxhead in reply to Mgt8]

Thanks Margaret for the advise. My sister has a pregnancy pillow so will ask if I can borrow that.

Did the widen work or did you need a stent done? I live on my own, did you need to have some one with you for 24hrs or is it ok to be on your own. Did you have it under local as think that is the plan on Wednesday.

I read about ginger for sickness but havent tried it. Do you buy fresh ginger or use tea bags. If it's fresh how much would you recommend using.

I hope dialysis is going ok for you and settled into a routine and feeling the benefits.

Thanks again

Charlene

[Mgt8 in reply to Charlene_Coxhead]

Hi

Hoping the pillow works for you. Not eating too near bedtime helps too.....

I sip ginger beer but I probably shouldn't be recommending this to a fellow kidney patient...

(I'm sure other ginger drinks would work too.....)

I've had two stents done over the past year and yes it's working well now.... both were under local anesthetic......second time was best as i asked him to give me plenty of anesthetic, you can feel the pressure but there should be no pain so do ask....good luck with your opp this week....

I do dialyse on my own...it was a bit scary at first but now I know what to do and have had lots of practice, it's fine...the most important thing to learn is to come off if you need to during dialysis.. ...i haven't done this often but it's really useful to know if you are by yourself.....it gives you a confidence so you don't feel trapped.. ...

The best bit of dialysing at home is that you can pick and choose when you do it....as long as you get the right number of hours, you are in charge.. ..its much easier to have a life around it...

The biggest surprise for me was that I also feel so much better......i was so busy thinking how I was going to organise this that it never crossed my mind that I would also feel well again......a nice surprise....

Hope it all goes well for you...

Margaret

[Mgt8 in reply to Charlene_Coxhead]

....i think they like someone to take you home after the opp.....

To be honest although I'm very independent, it was also nice to have someone there to chat to and take your mind off things....

[Charlene_Coxhead in reply to Mgt8]

Thanks for the advice. I've just made myself some homemade finger biscuits and my kitchen smells lovely. Hopefully I can have a nice treat and it help. Also made some ginger tea with some honey and lemon so sipping that. Can't say I'm enjoying it but its worth a go.

Thanks for the advice. Glad you getti g on well with dialysis.

Charlene

[Philipjm in reply to Mgt8]

Hi Margaret,

Had my first fistulagram, all went well and did not feel a thing. Was expecting to go home but was told dialysis was to start immediately, this was a shock but all went well.

Had my second fistula 6 weeks later on the first day of my home training, again all straight forward and did not feel a thing. Straight into training within the hour putting my own needles in.

This for me was the scariest part but the second time was great thanks to the help and support of my hospitals (Derby Royal) wonderful home heamo training unit.

I cannot praise them enough, always someone available to help or come out to my home if I need them.

I am using the nxstage machine, really easy to use.

Best wishes to all the other “normal” people on line.

Philip

[Mgt8 in reply to Philipjm]

Hi Philip

Yes, putting your own needles in is scary at first but I find it helps to imagine it's some one else's arm.... (no one in particular.... ...just not mine...)

I'm on Nxstage too...havent taken it on holiday yet though which is why I chose it in the first place...... do you plan to travel with yours?....

[Philipjm in reply to Mgt8]

Hi Margaret,

Off to Centre parks at Longleat over Christmas with our daughter and family (8 people in an extended family) looking forward to a holiday as it will be the first time in 3 years having put holidays on hold.

Planning a trip to Oz next year to visit our son and family, planning easy just the doing it a hurdle to climb, but I have absolute faith in the system.

My only slight concern is that I am more than 2 hours drive from my transplant clinic should I get the call!!!

All a bit anxious when the call comes, had one but was a no go after 10 hours so st least I know the procedure.

Best wishes

Philip

[Mgt8 in reply to Philipjm]

That all sounds wonderful.. ..

Will you take your machine or book into a clinic there to do it for you?

Me and my other half are planning to go to Europe next year but the clinics seem so well equipped and linked to the NHS so free.....

I'm debating booking in there as they also transport you from your hotel to the clinic and back....would rather do my own needles though.. ...

Do they send supplies all the way to Oz?....

[Philipjm in reply to Mgt8]

To Oz there may be a recipricol agreement and be able to use a local hospital , yet to research a little more.

Fluids wil be delivered, I did PD in Oz and all worked great.

Kind regards

Philip

[Mgt8 in reply to Philipjm]

....that must have been so frustrating to be called in and end up without a transplant....

I don't think 2 hours will be a problem...they wouldn't have added you to the list if it wasn't practical.. ...

[Philipjm in reply to Mgt8]

I always stay within 3hours drive of my unit and always tell the coordinator when I am away and ensure as well as my mobile there is another number they can call me on

Philip

[Philipjm]

Hi Charlene,

Had my fistula in May but like you had to have a fistulagram before I started dialysis.

Fortunatley no sickness problems, started dialysis 9 weeks ago and now after training doing it myself at home.

Had to have another fistulagram 3 weeks ago and all good now.

Just hold on to the fact once you start your dialysis you will feel more “normal”.

I am feeling better than I have for 2 years, toxin levels are dropping by the week and I sleep so much better.

Hold on and best wishes.

Philip

[Charlene_Coxhead in reply to Philipjm]

So pleased you are doing well, and amazing your doing it at home already. That's my plan too.

From what your wrote I'm guessing you had problems sleeping and even that has improved.

I can't remember the last time I had a good nights sleep.

I see my consultant on Wednesday after my fistula is sorted so hopefully some decisions will be made as can't carry on much longer. My am was to get to the New year dialysis free but not feeling like this.

Thanks for responding

Charlene

[Philipjm]

Hope you feel better soon.

Like you I can’t wait for a transplant but I am told the average wait is 3.5 years if a suitable organ becomes available.

Here’s hoping your comes soon.

Best wishes Philip

[Tashe]

Hi Charlene,

I am also stage 5 ckd, with ex Gfr of 7. My transplant is failing and I'm having peritoneal catheter reinserted in 2 weeks time.

Have had some feelings of sickness (not too bad) and doctor prescribed Ondanestron tablets. They work quickly and have had no symptoms since taking 1 each morning. Worth a try, as you're right, it is the build up of toxins which cause it.

Many regards

Tashe.