Need ideas for initial assessment appt tomoz - what should I expect?

[Bagpuss21]

I have my first assessment appt tomorrow (by phone!), and am unsure what to expect. Can anyone please guide me as to what I’m likely to be asked, and ideas for what I ‘should’ be asking them…?

I have an indwelling catheter…. can’t say I’m liking it, but if it’s necessary I’ll have to continue. Anyone else feel despondent about their health…? My dad died of renal cancer when I was 12, so that’s always in my mind.

Apologies for being afraid & down.

[ILMA54]

From your note, it is unclear whether this is an initial consultation regarding kidney disease or a work up to get on a transplant list.

If it is the former, they will collect your health history and have you do blood work (measure creatinine level and metabolic panel and perhaps a 24 hour urine collection).

If it for a transplant, you will likely have filled out an extensive health survey, but the actual workup consisted of Cat scan, X-rays, full blood work-up (in my case 30 vials of blood), maximal heart rate stress test, dental X-rays,and a visit with transplant doctor. They also included a one hour orientation session for people that day and visits with an insurance.consultant and a social worker.

[Bagpuss21 in reply to ILMA54]

It was an initial assessment by urology to see in what way they can help, not re a transplant.

The nurse asked some details and gave me the option of intermittent self catheterisation, or having a catheter and a lever / tap to use toilets relatively normally. I am sure I wouldn’t cope with having to self catheterise multiple times daily so am going for the cath with lever/tap. The leg bag is soul-destroyingly horrible and has really been like a millstone round my neck (my mood’s hit rock bottom because of it).

[ILMA54 in reply to Bagpuss21]

I can certainly understand the leg bag. I used to have trouble with anesthesia during surgeries and would not be able to void so I could go home. As a result, I would have to walk around for a month with a leg bag.

Eventually underwent a TURPvprocedure several years ago that has made all the difference.

[Bunkin in reply to ILMA54]

Wow me too after surgery. Always a catheter but learned how to self catheterize

[Bagpuss21 in reply to ILMA54]

I’m pleased that the TURP helped ease the problem, that’s good to hear

[ILMA54 in reply to Bagpuss21]

First, I went through years of tamsulosin followed by a year or so of finasteride. When they found I was still retaining urine, they did the TURP in part to protect kidney function.

[Bunkin in reply to Bagpuss21]

Self catheterization isn’t hard but whatever makes you comfortable. I have learned the doctors treat everyone the same, they follow a protocol. Well I know me and I’m going to make the decision about the way I want to do things. My advice. Pray for wisdom, do your research. Trust me. I’ve been through dialysis, Covid 2 cancelled transplants then the actual transplant. In all of this I’m constantly fighting for me! The doctors don’t know everything and they don’t how you respond to things. Hope this helps and gives you courage. Prayers fir you. God can do anything

[Darlenia in reply to Bunkin]

Hi Bunkin. It caught my attention that you're comfortable with self-cathing and that you also managed to get a kidney transplant. My hubby, now on dialysis, has some urinary function. But signs indicate he may wind up having to self cath regularly and I worry that this will take him off the kidney transplant list. Did this happen to you? Should I stop worrying?

[Bunkin in reply to Darlenia]

You should stop worrying. I had to do it because when I have any kind of surgery, I can’t go for a few days after so I have to til I can go. That won’t keep him off list. I was down to gfr 2 when I went on dialysis. I had a friend who started a campaign to find me a kidney. My donor was my cousin. She was up and about in a week and perfectly fine! Praying for the best for y’all

[Bagpuss21 in reply to Bunkin]

I wouldn’t be able to self catheterise as I have adhd & autism, and I’m aware I couldn’t/wouldn’t cope with that. I’d end up in tears through sheer frustration.

The NP was being pushy about wanting me to self-cath, but there’s no way I’d cope with it / manage. He also told me about the cath that stays inserted but has a lever / valve which I’d open to go for a wee - and my bladder would continue to hold the urine. I’d need to go to the loo every 3-4 hours, which’d be ok.

[Bunkin in reply to Bagpuss21]

You’d know what works best fir you

[Jayhawker in reply to Bagpuss21]

Give yourself some time to adjust... This should have you feeling better. That’s the important thing.

Jayhawker