Feeling worried....

[paigemarie31]

Having PKD for aslong as i can remember it's never affected me that much, until recently theyve deteriorated, struggling with a lot of pain. I've also just recently been diagnosed with ckd stage 1 at the beginning of the year and kidney stones just a couple days ago. I'm really struggling to get my head around it all, as it's so early on in all conditions my nephrologist has said there isn't much that can be done atm. I think that's what's worrying me more, it's only gonna get worse from here and I'm struggling to get my head round that. Any tips on how to feel less anxious about all this??

[CA_Coast]

Did your doctor discuss the new drug that can slow cyst growth? I also have PKD but I believe the drug is for people in the early stages. JYNARQUE™ or tolvaptan

[CA_Coast in reply to CA_Coast]

Sorry I didn’t say anything to help with your worries. PKD is usually slow so you may never reach stage 5.

[PaigeyPaigeForLife in reply to CA_Coast]

Yes it is, I filled out the paper work to start taking tolvaptan, I just entered stage 3. I will share when I start taking it.

[paigemarie31 in reply to PaigeyPaigeForLife]

Please do, it would be good to know there's something that can help, I get worried cos I know the older I'll get the worse it will get. My specialist has spoke about taking my left kidney out but I'm so young she wants to monitor me a bit longer as it's last option. Hopefully they can do something else first x

[PaigeyPaigeForLife in reply to paigemarie31]

We continue to take the best care of ourselves and hope they find a cure in the future.

[DeanSamson in reply to CA_Coast]

I was told this drug is only for people who have a progressive disease and they won't give it out if your showing no signs of progression

[Hidden]

Please insist on getting a brain scan for aneurysms, I had a subarachnoid heamorrage earlier on this year( thought I had a brain tumour), as this is a risk with pkd you should get checked out.

[paigemarie31 in reply to Hidden]

I had one when I was 12 because I continuously got migraine. Maybe I should ask for another one I get about 4 headaches a week that I put down to stress.

[atropa in reply to paigemarie31]

Subarachnoid aneurysms are usually asymptomatic, so your headaches and migraines are likely unrelated. The decision to monitor or do an MRI is based on your risk factors, ie whether it has occurred in your family or whether you have had it before. But I'd recommend talking it through with your consultant.

[MrsLL]

I know what you mean - although I’m early in the journey of revisiting what stage my pkd is at (diagnoses 19 yrs ago but no probs until now) I’m starting to become very aware of my own mortality and the implications of this on life, work etc. I’ve not shared my worries with anyone as try to box them off but thinking I might use our employee assistance programme for counselling - I don’t like to talk to family/friends as don’t want to worry them so maybe speaking to someone independent might be helpful. Have you thought about that at all?

[Susan_101 Moderator PKD Charity for Autosomal]

Hello sorry you are feeling anxious at the moment regarding your PKD. Many people find it comes in a sudden wave, reality hits! Its positive you are at stage 1. Others have mentioned Tolvaptan which can slow the progression of cyst growth. The UK based PKD Charity has a well written piece on PKD and kidney stones you may find it useful pkdcharity.org.uk/about-adp...

[Imataloss]

I think that the best thing that you can do for yourself is to stay on top of your doctors visits (which it seems like you are) and move forward. My FIL had no symptoms other than high bp which has stayed under control, until his mid to late 50's he had a one and only bout with kidney stones and possibly stage 1 KF. (not sure) He is 82 now and has not had any progression to this disease. Stay focused and stay positive. One thing I can say about my FIL is that he was put on high bp medicine in his early 40's along with metformin and statin for high cholesterol. (I have read that there are trials into these drugs to see if they slow down the disease.. I sure wonder.. maybe you should look into clinicals) He was never diagnosed with PKD until this year, because our youngest son had an CT on his abdomen for IBS and "surprise" he had cysts and was diagnosed with PKD. This prompted myself and husband to get tested which uncovered that my husband has cysts, he is 56, no symptoms and is stage 1 kf. Stay positive and hopeful for a cure and remember that this is a SLOW progressing disease generally. You may never have any problems. We have been told by several doctors and I have read, that there are lots of people that may have PKD but because we don't just get CT or Ultrasounds of our abdomen for no reason many people have lived long and uneventful lives with this disease. I am staying hopeful that this is your case as well as for my son and husband. Best of luck to you, stay strong and happy.. most importantly live your life to the fullest!

[paigemarie31 in reply to Imataloss]

Wow that's actually really helpful! It's hopeful hearing how people never know they have and live normal healthy lives, i think some of the problems im having atm is because some cysts are growing and atm they think thats what my pain is so hopefully it'll settle down again soon! thankyou x

[Imataloss]

I hope so as well! Stay focused on living to the fullest.. don’t borrow trouble where there is none and enjoy this journey we call life!! Best of luck!

[alena85]

Im in the same boat but worse i think

[1lou]

Im on tolvatpan and have been for 20 month they are working well for me personally. I believe your kidney function has to be below 80% to go on the drug.

I also have 4 aneurysms on my brain ( 3 coiled 1 clipped) i also suffered a Sub-arachnoid haemorrhage in 2013 aged 34. I used to be very anxious about it all, but i think if you spend all your time worrying youre not living. Stay focused on the things you can do rather than the things you cant xx

[Susan_101 Moderator PKD Charity for Autosomal]

1Lou thank you for your positivity. I am sure we all have a PKD wobble every now and then. The PKD Charity (UK) has a section on "Coping" pkdcharity.org.uk/about-adp...

[paigemarie31]

I agree I'm on blood pressure tablets now but it hasnt gone any further so I feel like I should be feeling lucky it's still stable. Didn't realise how much this site can help definatley feeling more positive ! Thankyou everyone 😀