MY LIFE IN PKD📸: Let me state firstly... - PKD Charity for A...

PKD Charity for Autosomal Dominant PKD

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Let me state firstly this is my journey and i am just sharing my experience. A month ago while i was feeling very depressed with my life, living with this disease, unable to fully really enjoy my life, the countless doctor's appointment, test after test, i just about had it with my life of appointment after appointment, so i canceled my up appointments and stopped taking my meds! I realize i was being extreme but i had to do something. I really was on the edge.

After i canceled my therapist appointment she called wanting to know if i was alright and did i canceled my session, I acknowledge that I did she said I can call her when ever I needed to.

One week after I stopped taking the meds I noticed that I was no longer feeling tired, sick or nauseated bug my energy level was up, i was up exercising not wanting to be laid up in the bed just feeling good. Week two i started back taking my blood pressure medication and I have been having a wonderful time living my life with my daughter who is finally enjoying her Summer vacation.

This is not a recommendation, just my story I will be attending my appointment with my Nephrologist in August as scheduled.

I have concluded that the side effects of all the meds I was taking kept me in a daze. This is my experience and not advice for anyone else.

24 Replies

Blood pressure meds have caused me nothing but problems, I've had numerous meds and all of them leave me feeling like I've done a 12 hour shift when in reality I've just had 10 hours sleep. Feeling like I have been hit by a bus but I had a brain heamorrage this year so maybe I should have been more responsible and took the meds on offer.

PaigeyPaigeForLife in reply to Hidden

The side effects from all these meds is terrible! We just have to use wisdom in taking them. I hope you are doing better now. 💚

tob39 in reply to Hidden

Was the brain haemorrhage due to the pkd? I have read that pkd sufferers can be susceptible to this. It shocked me. I don't have pkd, but my husband (stage 5) and daughter (age 12, gfr normal so far) do. Sometimes I feel the more I read about it the more I wish I hadn't!

Hidden in reply to tob39

Sorry for late reply, brain aneurysms are often a symptom of pykd (it's the one thing I've always been scared of). The pykd I worry about every few years and it destroys me for a week or two. My advice is to live your life for today as you don't know what's in store. Hope all is good.

What medication were you using?

Gabapentin 300mg, Lisinopril 2.5mg, Mirtazapine 15mg, Prozac 10mg, Ondansetron, meclizine.

Hi PaigeyPaigeForLife

I was on Liprisional and Atakan (not sure of the spelling) and another I can't remember but they made me so sick I was told to stay on them but in the end refused. I was dizzy, did not know what I was doing, exhausted, bloated in the stomach and the thought of food made me sick. I had headache too. I ended up suffering from Fibromyalgia and Angioendema and other things. My blood pressure stayed high for a couple of years making me exhausted, overheated in the hot summers here and suffering from headaches. My veins in my legs were blocked down into my feet I needed vascular surgery as well. I was falling over unable to stand up and walk much and in pain. I was then put on Ramapril which contributed to mitchel's disease and angioendema. I had to stop taking them. My blood pressure came down then. I have been feeling better but my kidneys now are destroyed and grossly enlarged in the meantime. My nephrologist does not know why they still work so I'm unsure if it was the blood pressure medicines or just my kidneys destroying themselves with the disease rampid at the time. The specialists don't talk about it to me even though I asked. I had to take phtotos before they would take me off the drugs that were thought to be making me sick. I think its really serious that we can't find out what is going on. Here in Australia the disease is thought not to have symptoms or cause much pain. Not much information and specialists don't discuss much with me anyway. This is my story since 2013 and finding out that I had the disease due to high blood pressure and pain.. But I cut the pain killers and now just deal with the pain. I find taking my mind of what pain I have taking panadol and stoping when I feel ill helps but I can't work anymore because of this so I"m able to just be home and deal with it as I can.

I am so sorry to hear this, being diagnosed is already terrible but not taking care of by our primary care doctors is much worse. All these meds we are put on causes us to get more ill, medicine serve nothing more than to suppress not to heal. That is why we have to do our won research and take the best care than we can. I am only taking the Lisinopril for my BP, having the intervention radiology has helped me a lot as well, I am now able to exercise and live a more filling life.

I hope you are able to find a Nephrologist who is willing to assist you in having a better quality of life. Continue to make right food choices, drink lots of water, PKD patients can only take Tylenol for pain its safer for our kidneys.

Hi PaigeyPaigeForLife,

Thank you for your understanding and advise. I have been taken off the BP meds that made me sick. I now take Moxidine 200 mg at night because it makes me drowsy and Nebilets 10 mg but my BP is not as low as it should be even though it has dropped. So the meds are takable but not completely controlling my BP. The two nephrologists told me that my BP should not go over 110 but its been up at 130 - 140 normally and then -180 (on bad days) . They have not changed the meds for years but dropped one. Since then my BP is often high and I have been told that the kidneys are destroyed and grossly enlarged. The kidneys are being damaged at a faster rate I feel from this but since the nephs wont prescribe meds to bring down the blood pressure not a lot can be done.

I might look up another nephrologist. We pay a lot for them here each visit and so I seen about four of them over the last six years to try and get care and advise but they are all dismissive it seems about explaining the medications and development of the disease. I'll keep trying to find one that cares a bit more. I notice we have no lady nephrologists here. I wonder why that is? I too had one of the big cysts drained in November that was stuck under my ribs then I was able to sleep and the constant terrible pain subsided a bit and I could also go for more walks. I felt a lot better for a while I think they have come back though. However knowing if you beg they will send you to have them drained if you are in severe pain is a consolation. Thanks again have a great time enjoying time with your family.

I really understand, having lived in pain and discomfort for more than twenty years and most times alone. My Nephrologist is female and she has been very helpful with my care, my next appointment is next month. I do hope that you will find a Nephrologist who will assist with you having a better quality of life.

I was told my bp shouldn't go over 130 I am stage 3.

Hi PageyPaigeForLife and Everyone,

Thanks for writing back. I'm so happy to hear that you feel well and are having quality time with family again.

I'm appreciating my time lately with family too as its important. I'm stage one but the nephrologist doesn't know why my kidneys work so well as they are destroyed and really large he says.. The BP is 130 at home and more at the GP's but its general health that is affected a lot. I get a lot of nerve pain and if my BP is hight its put up by that. I am ok for a bit and then I get a lot of pain but I've learnt that I have to watch my output of energy as I get fibromyalgia and the starting of arthritis. I have got preventative meds for this now so it is important to speak about what you feel and have the tests. At least now I know this will not worsen for me from now on.

I contracted shingles just a few weeks ago , silly me thought it was ant bites from the garden so did not go to doctors till much later so no meds will work now. Have to wait it out till it subsides. Apparently I'm run down and my immune system is low. So watch out if you need a rest take one and try not to stress about too much. It does not hurt to stop or slow down if you feel you need too. And go straight to the GP about anything if you have a doubt.

I think watching out for side effects is a something important and talking to the nephrologist and doctors. I think taking someone with you and asking for letters about your symptoms and treatments is good too. Someone told me that recently. I hope to start doing this.

Just having a place to chat on here is great so hope to keep this site going for everyone to drop in now and again to say how they are. Keep up with life when you can and stay well. Cheers and Best Wishes.

Hidden in reply to snowcastles

I've heard so much and often of blood pressure tablets destroying kidneys. Every time I read the leaflets with the tablets they always mention risks to kidneys, when confronting doctors a out this their line is " take the tablets and we will deal with the side effects when they happen" but when you have seen people you know use the tablets then die of kidney failure it make you think, I don't take anything I'm not happy to take.

snowcastles in reply to Hidden

I think that getting a second opinion is always good so I have been to see a number of nephrologists even if I have to pay a lot for them its worth it and I see a specialist physician as well now. I still feel my BP medications should be monitored a lot better and I understand that the BP meds seem to be a change that nephrologist would rather avoid but its worth it to keep up the discussions and questions. However my nan died of an aneurysm at the age of 59. She, I don't think was diagnosed with PKD due to it being unknown to doctors and thats why I have it its been inherited. My dad passed from stomach cancer with PKD and was on dialysis in the end (side effect of BP meds I don't know as he died at 80). Nan had high blood pressure so meds need I think to be taken but monitored and changed if they have side effects. I know that life would have been both extended and better for my nan and she would have suffered less if she had had proper treatment for PKD. Wish I could go back now and save her.

Hidden in reply to snowcastles

The problem with pykd is that the nephrologist is only concerned about your kidneys, as the nerologist only bother about the brain, generally they will give out meds which can be detrimental to the other. My mother has pykd and has liver,kidney and multiple other issues. I myself have pykd, aneurysms also contracted Lyme's disease a few years ago.

snowcastles in reply to Hidden

I do agree, I wish one could attend a kidney clinic where specialists worked as a clinic. Thats not how things work here either. Hardly any of my specialists will work with each other. Makes it very expensive and very exhausting for me here in Australia.

PaigeyPaigeForLife in reply to Hidden

I was diagnosed with Lyme's in 2010 and vertigo this year but feeling great lately.

The current cientific consensus is that one should take certain pb medications if necessary, to preserve the kidneys. That could avoid the need of dialisys at all or delay it.

There are several classes of bp medication. The first two dis not work for me, the third is a sartan class, is working well so far.

While one may be seduces to dropping meds, that may lead to future regret. I believe it’s best to work with doctors to find a suitable substitute for the drugs.

Best of luck to all!

snowcastles in reply to Rick234

Hi Rick234,

Great to see you on here. Hope you and family are well and enjoying your summer.

Keep well and stay safe and happy,

Hi Rick234, life is great for me right now! I have felt this good in a long time, whether its my body no being on all the meds or having the cysts drained I am thankful...

Sorry about that you had the shingles, didn't your primary care give you the shot? I got my shot and it is very important to write down the questions you may have when going to your Drs appointment. My doctors are all ways proud of me, I ask lots of questions its about me i want to know.

I am having the best Summer ever, just being able to be up and about means everything to me and for that I am thankful... Thanks for the update take care ✌️🏽

My husband was much the same. He has advanced pkd. He didn't work for 2 years, he was so tired and depressed. He stopped taking a few of his pills, and made a dramatic improvement. He's even returned to work. I am finding that support for this disease is minimal. He has become very depressed since this stage 1 fistula failed. He's heard nothing from his surgeon in reference to this. His Gfr is 12% that we know of. I cannot fault the renal consultant he has, but the surgical team are just a nightmare. He saw his consultant about 3 weeks ago, told him what's been going on, still we haven't heard from his surgeon or the renal nurse. Sorry if I'm having a moan! He says the best thing he ever did was stop the pills he did stop, that has allowed him to return to work (14 hour days though!), and his mental well being had improved til now.

snowcastles in reply to tob39

HI Tob39

Its not easy staying ahead of this disease but your doing well to make sure your husband has the support you have already. A second person to go with him his appointments so he has as much support as possible. It really helps to have second person there for support. I think its harder on your own at appointments. Great he's back at work and his feeling better. Hope things continue to improve.


Tablets and pills make everything worse, I have pykd and had sah and I keep the meds to a minimum as I'd sooner feel alive than be a zombie regardless of the outcome

PaigeyPaigeForLife in reply to Hidden

I agree Jasonwellens, I was on too many so now I just take the BP meds and my vitamins taking Tylenol when needed. But i am no longer in pain since I had the Intervention Radiology procedure. My life is better and I am now trying to find part time work. Yay for me! I haven't worked since 2005. Have a great day!

Hidden in reply to PaigeyPaigeForLife

Good luck

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