Giving up is NOT an option! Trial without ... - PSP Association

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Giving up is NOT an option! Trial without Catheter vs Supra-pubic

Megabrew88 profile image
17 Replies

After being told by the GP in the nursing home, that my B stayed for 4 weeks after being discharged from the hospital, that it will be to his best interest to leave him on catheter as it will create a lot of distress, and to give up the idea of TWAC, I finally got the neurologist, Urologist and DN to do a TWAC (before considering supra-pubic) on B last week, and thank God it was a success!!!!!!

It was a very trying day though, as it took a long time 8 hours for him to finally pass urine. I did all the tricks I can find (thanks to google) on how to induce a man to pass urine, from wetting his stomach, to running the tap (oh our water bill this month), and litres of liquid to walking him to no avail. Lucky we had the TWAC at home instead of the hospital so he was more comfortable.

By late afternoon the DN, after calling to check on him several times during the day, said she will be coming in to re catheterise him in an hour. So I prayed and just lifted it up to HIM and made a final push and took my B for a 30minute walk around the block!

Just as we were preparing for the DN’s visit, my B finally passed urine!!!!!

We are now on Conveen! It is a bit messier and fiddly as it’s early days, BUT I’ll take the mess any time as long as it’s best for my B.

So lesson learnt never give up and pray for guidance and leave HIM to do the rest!

Mx

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Megabrew88 profile image
Megabrew88
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17 Replies
Kevin_1 profile image
Kevin_1

Gosh Megabrew!

That's some determination. Fantastic.

What is a TWAC please?

Kevin

x

Megabrew88 profile image
Megabrew88 in reply to Kevin_1

Hi Kevin,

Thanks it was a battle worth the fight!

TWAC is Trial Without Catheter! They said it’s impossible as he has been on catheter too long (4 months) and they thought his PSP and prostrate is making him NOT pee normally.

Mx

Kevin_1 profile image
Kevin_1 in reply to Megabrew88

Gosh Megabrew

Got you.

Now that is worth the fight.

Bravo :)

Megabrew88 profile image
Megabrew88 in reply to Kevin_1

Thanks Kevin, no applause required 😍

I’m just doing the best (by my B) and fighting the battles for him, as he is not capable to do so. Also some doctors (not all though) are so quick to rule out possibilities and taking the easy way out!

I know that you are doing the fighting for your dear Liz too! ❤️

Marie_14 profile image
Marie_14

Megabrew you are an inspiration!! Well done to you and to your husband too. Maybe you have taught the medical profession a lesson? Maybe you have also taught people on here something as well?

Convenes are much better in my opinion. You will get the hang of them. If I managed them anyone can. Make sure you get adhesive to help it attach and a spray to help it come off. You can get a day one as well as a night one but I bet you know all this? Filled with admiration here.

Marie x

Megabrew88 profile image
Megabrew88 in reply to Marie_14

Oh thanks Marie!

I’m normally coy about sharing private matters publicly, BUT I thought I’d share this one for those who are still in the battle with catheters and doctors who are taking the easy way out!

I also think that there is an integrity (in listening and info) in this group, so I felt compelled to share.

Hmmmn I certainly don’t know about day and night ones, so I shall be on to it ASAP.😍

Thanks.

Mx

Kevin_1 profile image
Kevin_1 in reply to Megabrew88

Thank you for doing that.

Very useful info.

Kevin

x

Marie_14 profile image
Marie_14 in reply to Megabrew88

Megabrew when I say day and night ones I should clarify what I meant by that. The convenes are the same but the leg bags are a different length. So sorry for confusing you!

Marie x

Megabrew88 profile image
Megabrew88 in reply to Marie_14

Oh thanks Marie💕

NannaB profile image
NannaB

Amen 🙏🏼 XxxX

Megabrew88 profile image
Megabrew88 in reply to NannaB

Indeed Bev! ❤️

Spiralsparkle profile image
Spiralsparkle

I had that battle two years ago when Mum come out of hospital saying leave it in. I pushed for a trial and eventually got. dN who listened as it was working all fine before she went into hospital. It took all day but in the end she did a wee so it was removed.

Two years on and it is being pushed by urologist to have another one put in as she keeps getting UTIs (not had one since Feb though) and he said be more hygienic than the incontinence pads, especially overnight. Sometimes she won't go from morning to night time so that isn't good for her bladder...a dilemma again.

Megabrew88 profile image
Megabrew88 in reply to Spiralsparkle

Oh Spiralsparkle, it’s a tough call to make!

But then again catheters are more prone to infections and UTIs! Not to mention the discomfort and stress. If your MUm haven’t had UTI for awhile then that’s good news, and perhaps worth putting off re catheterision? I know it’s messy and all BUT she’s still passing urine.

Can they not perhaps give her something for her bladder? Just a thought!

I pray you’ll find the right balance with your doctor, when the time comes.

Love and light,

Mx

Spiralsparkle profile image
Spiralsparkle in reply to Megabrew88

That's my thought too..having an ultrasound done in July to check all ok and then going from there. I said that surely catheter increases UTi as she kept getting them with it in. I'm inclined not to have it in unless there is a good medical case presented to me as to the outweighing benefits

Megabrew88 profile image
Megabrew88 in reply to Spiralsparkle

Goodluck with ultrasound next month.

BTW what I find useful in staving off UTIs is cranberry juice (or pills) and Vitamin C. My B drinks pure cranberry juice and Berroca and it seems to be doing the trick.

Spiralsparkle profile image
Spiralsparkle in reply to Megabrew88

Mum won't drink cranberry anymore, gone off it. Will try the bit c, do you take it every day ?

Megabrew88 profile image
Megabrew88 in reply to Spiralsparkle

Yes, it’s a tablet form that dissolves into a fizzy drink. It’s quite nice, even with liquid thickener, I think😍 my B likes it n I tell him it’s his new champagne😂

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