Recently diagnosed...under-informed..... - PKD Charity for A...

PKD Charity for Autosomal Dominant PKD

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Recently diagnosed...under-informed...full of questions that I am sure I don't actually want the answers too

orca67 profile image

... and scared beyond belief

I am 51 with no outward symptoms, no family history, and no idea what if any my future holds

I have read some great and positive replies to some posts, but cant help feeling that feeling of positivity seems unreachable to me right now... how do you process this bombshell!

I could have 10-15 years of having no issues before it all goes south and then I have the prospect of a retirement with my loving wife spent in hospital plugged into a machine, hopefully keeping me well enough for a donor to come along and give me another 10 years...

how do you get this all straight in you head

21 Replies

Morning Orca67,

You have certainly described how many of us feel when first diagnosed.

I first found out I had adpkd when I was about 52. It certainly came as a surprise and I felt as if the carpet had suddenly been pulled from under my feet.

Six years later and I have a kidney transplant that is working well. (and I know some kidneys last up to 10 years but a friend of mine has had her kidney transplant for over 30 years and is still going strong.) Knowing that, helps me to be positive.

The only way forward when first diagnosed was to BE positive and to proactively find out as much as I could about my illness. To me, that way, I regained some of the control of my own life. There were down days of course, when feeling like there was no escape, but making connections and

talking with others who had similar experiences helped too.

It's easy to get caught up with all the problems ahead however the best advice I was given was to plan ahead but to take each day, one at a time.

If you have no symptoms, then that is a good thing.

Find out what stage you are at, you may well have a long time yet before your kidneys reduce function enough to cause any symptoms.

I have heard that some people never get to the stage where they need dyalisis.

Information gives you power over this thing so do explore your condition more and do ask your doctor about your test results. Your egfr gives you a rough idea. Here's a link that will help you to gauge what stage you are at.

kidney.org/atoz/content/gfr

I started dyalisis at egfr 5 but it depends on your overall health.

I do hope some of this helps. There are lots of people on here who are going through pkd too so do explore the forum.

Best wishes,

Mgt

orca67 profile image
orca67 in reply to Mgt8

Thanks ...

Yeah cysts found as result of routine blood test ... gfr at 38 so stage 3?

Positivity and knowledge seem to be key as you say so steep learning curve ahead

Take care and keep posting the anecdotal comments from people in the same position are a huge help

Mgt8 profile image
Mgt8 in reply to orca67

As you are stage 3, ask your doctor about Tolvaptan

kidneyresearchuk.org/news/t...

It wasnt available for me but you may have more luck....

Here's the official guidance as to who can be prescribed it...

nice.org.uk/guidance/ta358/...

orca67 profile image
orca67 in reply to Mgt8

Thanks... they have hinted at tolvapten even though I am just outside the age bracket ... they have said it may push back dialysis by a year for every 4 years on it , sounds like a no brainer to me but I am sure the added loo trips will get quite wearing

Mgt8 profile image
Mgt8 in reply to orca67

Its a decision only you can make...

When I got my transplant, the bathroom visits really went up, and it seemed to be all I was doing. But as I'm now healthy, I feel its a small price to pay....

Good luck with your research and decisions....

Best wishes,

Mgt

MarthaBailey1 profile image
MarthaBailey1 in reply to orca67

I started on tolvaptan July 2018 aged 61ask your consultant the earlier the better good luck

Hello,

If you can’t get onto Tolvaptan, or while you wait to get on it, drink lots of water.

Tolvaptan is a vasopressin antagonist, and there are suggestions that drinking lots of water may help suppress vasopressin production in the body. Cambridge university are conducting trials on this (cctu.medschl.cam.ac.uk/Tria...), as it could potentially have a beneficial effect on cyst growth etc...

I know it is still being looked into but my consultant suggested this 10 years ago when I was first diagnosed (so before Tolvaptan was even on the market) and it is seems like a potential easy win for me, despite the increase in loo trips, so I have been doing it ever since!

Emmanuelle

Kenchappa profile image
Kenchappa in reply to FrenchEmm

Hi,

How long have you been on water trial and at what stage did u start it. My consultant also asked me to consume more water, I am yet to get some tests done before starting tolvaptan. As of now I do not experience any symptoms.

kenchappa

FrenchEmm profile image
FrenchEmm in reply to Kenchappa

Hi,

I did the water trial in the feasibility stage a couple of years ago and that lasted 3 months- not sure if the main stage has started now or not yet.

I have been drinking about 3-4 litres of water for about 10 years now. I was first diagnosed in my early 30s so just when the disease started to be visible. I am 42 now and my kidneys are still working fine (normal eGFR and creatinine) although the cysts are growing (my kidneys are >17cm each vs a normal average size kidney of 13cm I think). Of course I will never know if the water drinking helped or if it would have been this way regardless- my dad also have PKD and he started dialysis when he was around 55, so I may have a similar progression to him. However it made sense for me to try it, because it was achievable and with no drawbacks (aside from more loo trips) - now it is such a habit that I don’t really have to think about it, i just always have water with me!

I guess it also helped me feel a bit more in control and proactive, which helped me deal with the diagnosis..

Emmanuelle

Kenchappa profile image
Kenchappa in reply to FrenchEmm

Hi again,

Does your consultant recommend tolvaptan, If so wanted to know the dosage ur on. My consultant suggests that i undergo some tests before starting tolvaptan so that they can monitor the side effects. The plan for me is to start on a small dosage initially and monitor the vitals.

kenchappa

FrenchEmm profile image
FrenchEmm in reply to Kenchappa

Hello,

No I am not on Tolvaptan at the moment as my kidney function is still fine. My consultant said it was indicated for people whose kidney function is declining quickly so we will see when mine starts to go down. If I am offered it, i would be happy to try it though!

When are you expected to do the tests by and start on it?

Emmanuelle

Kenchappa profile image
Kenchappa in reply to FrenchEmm

Hi,

If the test results are fine then I will starting it in another 15 days time, My consultant suggested me to start on it even though mine Kidney function is intact, He is of the opinion that if you take it for longer duration it can put of dialysis for a couple of years, so he wanted me to start early so that i can build up on the benefits of it from now itself. But I am still confused on starting it

kenchappa

FrenchEmm profile image
FrenchEmm in reply to Kenchappa

I can understand the confusion as it is a big step to take and you might worry about the side effects etc! I can also see where your consultant is coming from, if there is a chance it might delay dialysis it is worth a try!

Keep us posted when you have the tests and whether you do start taking it!

Emmanuelle

orca67 profile image
orca67 in reply to FrenchEmm

I was told tolvapten works well in most cases ... he said for every 4 years on it may push back dialysis by a year ... seems like a good return to me!

FrenchEmm profile image
FrenchEmm in reply to orca67

Yes, if I had the opportunity to give it a go, I would definitely go for it!

Kenchappa profile image
Kenchappa in reply to FrenchEmm

Hi Emmanuelle

Its been 2 months since i started on tolvaptan. Initially had a lot of side effects like need to pee every hour, sometimes for every half an hour and thirst. I always carry a water bottle everywhere now and the first thing i look at when going to a new place is the toilet. After almost 2 months now the side effects seem to subside, I dont need to pee often and I dont feel that thirsty, but the doc says drink around 3-4 ltrs of water a day. So I make it a point to drink more water now and as a result go to the loo often

kenchappa

FrenchEmm profile image
FrenchEmm in reply to Kenchappa

Hi Kenchappa,

Thanks for the update!

I am glad to know the side effects were not too bad and you are getting used to them now.

I really hope the med helps you stay healthy for a long time.

Have a nice day,

Emmanuelle

Its not easy to process at all, you go through where you are then you become proactive in your health, again not easy but while your kidneys are functioning you take care of them until you need dialysis or get a transplant.

As everyone else has said, keep positive, husband has horrendous cysts, but brilliant kidney function, liver is covered too, but he's had more problems with a million other things he didn't know about lol Including a brain tumour. If you want info you have to ask for it. Tbh get your BP and cholesterol at a good level, drink plenty of water to help your kidney out and get on and enjoy life. Do the holidays that you want to do is my most important bit of advice. My mum in law home dialised for several years, so doesn't have to be in hospital. She had a new kidney about 10 years ago and is doing great she's 74 (ish I think)

Hi, I'm 50 I was informed by my late father's GP that when they did the pm, he died at 60, he had PKD so I needed to be tested. I have large cysts and on liver too. My bp was taken at last visit and very high so wore a monitor for 24hrs, this was 3 weeks ago, still waiting for results.

This is a mine field! I don't worry about the future at the moment am living for today. I have 3 children who will all have to be tested too.

The only advice I can give is stay positive, live each day as well as you feel and walk a lot, it not only helps you stay sane but also is good for your health. I don't think I've been given the answers I've asked and sometimes feel I'm wasting their time asking questions so it can leave you feeling bewildered.

I find this site helpful knowing there are people in the same situation who have different experiences and more knowledge than I have!

Stay strong.

Hi; I'm 55 and was diagnosed 30 years ago so have had a long to time to come to terms with it. By and large your life will carry on as normal as long as you keep up with your medication. My function has dropped to 40 percent in the last 5 years and has remain stable. Jeans and trousers don't fit; but you can buy fancy braces (suspenders in the US). Hope you are coping well. GP

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