Dialysis Ups and Downs

[sakinah111]

Hi 👋🏾

Just a daily rant.

Been on dialysis now since December. I'm better than I was last year but it still taking its toll on me.

The needling having toe be re needled 5 times this Tuesday really painful. And still get horrible dizziness headache and nausea!!

I get tempted to not turn up because of it but I have to push myself as I know I need it.

My moods are very erratic as I'm frustrated from being housebound due to osteomalacia and I. Wheelchair most of the time.

Is it just me or are there others who's struggling with bladder problems interrupting their dialysis. I get excruciating pain constantly in my bladder and when going to the toilet and only a trickle comes out. The urgency is so bad I'm needing to go every half hour?!! It's like a constant knife penetrating me. Sometimes it wears off a bit but then other days it last for. days in agony?!!

I've tried Changing my diet but nothing. I'm seeing a urologist but he's playing up a bit taking his time and kidney drs are too one minute I can have tablets next minute I can then I can't then I can?! Then urologist was suppose to fax letter to my GP to permit me to have tablets which he failed to do. I went to GP to ask fir prescription she can't give it without urologist consent?!!

I'm going back to urologist to re investigate and also my GP to refer me to investigate my lower spine and leg as I have osteomalacia and rid in my leg and wondering if there could be any damaged nerves from this causing the bladder problem?!!

Such a pain in the neck driving me bonkers. Change by my whole personality. Effecting my relationship with my family as I'm always miserable and in pain and unable to go out cos I'm needing the damn loo all the time even tho it's only a trickle?!! Even if I go in a car it's painful going over bumps or turning corners. It's ridiculous!!!

Is there anyone out there experiencing the sane kind if thing.

I feel trapped bored and just don't know what to do with myself to occupy myself or distract myself. I'm jus sitting around all day doing nothing except going to dialysis?!

Sorry to sound so depressing but that's how things are at the moment.

Sakinah. 🌹

[Charlene_Coxhead]

Poor you it sounds like your having a really rough time at the moment. We all have low days so never apologise for being a bit down you entitled too.

I can't help with the effects of dialysis as not started yet, but can sympathy with consultant sending the info to the GP or the GP losing the letters. I've been waiting 5 weeks for the live donor team to contact my dad.

Keep on at them as it's not right your suffering in pain. Do you have Epo Injections as I have found that helps with joint pain and stomach cramps.

Your not alone and always some on hear that can offer advice.

Take care

Charlene

[sakinah111 in reply to Charlene_Coxhead]

Thank u for your kind words. I am grateful for them that someone out there understands xx

Are you in America cos if so is epo injections available in U.K. U think. And will it help bladder cramps you think? Writing this lol I'm gonna check google about it 👍🏾.

Hope all goes well with you on your side too xx

Sakinah 🌹

[Charlene_Coxhead in reply to sakinah111]

I love live in the UK and been on Epo Injections for the last 16months. I do them weekly myself and the drugs get deliveries by polar delivery from the hospital and you get assigned a Epo nurse which will take bloods every 8 weeks once your in a routine. They certainly have lessons my cramps and the consistent need to pee and there being hardly anything. I'm also on a diuretic to help with that too. The Epo injection is to replace the Erythropoietin that your kidneys are no longer producing.

I've had my fistula done 8 weeks ago but my consultant feels I'm coping at 7% Renal function.

Try and stay strong it's a a hard journey but we will beat it.

Take care

Charlene x

[sakinah111 in reply to Charlene_Coxhead]

So you saying at 7% your still not on dialysis yet!! They put me in chest line emergency at 9%?!

I'm gonna inquire about those injections to my GP at my appointment on Friday at at dialysis unit today if drs there.

Well if your kidneys decline past 7% your have no choice to go on dialysis. You doing PD or HD?

It's a headache but has to be done x

Take care xx

Sakinah 🌹💜

[Charlene_Coxhead]

I'm pretty tiny on size so my consultant thinks that's why I'm coping ok. Don't get me wrong I have bad days and get extremely tired and feel very nauseous.

I am going to do home Haemodialysis when they decide it is needed. My doctor is still trying to find a live donor and his ideal situation is to get it before I start dialysis. Fistula is already and won't need an emergency line.

Hope the consultant can help you out with regards to the Epo injection. Think you need to speak to the renal doctor rather than gp. Where are you based?

Charlene

[sakinah111 in reply to Charlene_Coxhead]

I'm based at a satellite unit in Sydenham but I was at kings for a long time.

Where are you based?

[Charlene_Coxhead]

I'm in a satalite clinic in swindon but my main unit is Churchill in Oxford