Polycystic Kidney Disease (PKD) Support Group
Polycystic kidney disease (PKD) is a progressive, genetic disorder of the kidneys. It occurs in humans and other organisms. PKD is characterised by the presence of multiple cysts (polycystic) in both kidneys. The disease can also damage the liver, pancreas and rarely the heart and brain.
I've know that I have PKD for several years. My mother had it and lived well with it. She experienced lots of kidney infections, but other than that was healthy. She passed at the age of 70 with another illness. I guess I assumed I'd be as lucky with the disease, however I started having UTI's and blood in my urine off and on. On my last doctors visit I was expecting to have a uneventful visit other than being worried about talking to my nephrologist about changing my BP medication and adjusting my Lasix.
I have been monitoring my BP and it has been fine, but about 45 mins after I take it I start feeling weak and dizzy. He told me my BP not being stable was to blame for my weak spells. ( BP has been fine other than increase with migraine pain ) He then told me my creatinine was now 2.44 and I would be looking at dialysis and going on a transplant list in about a year, maybe two. I'm so overwhelmed, I can't go 10 minutes without thinking about it. I feel great other than my usual migraines, usual kidney discomfort and pains and weak spells with dizziness that I'm guessing is the BP med. Does anyone have any suggestions on how to live your life without PKD consuming your thoughts? I greatly appreciate any advise.
I have been monitoring my BP and it has been fine, but about 45 mins after I take it I start feeling weak and dizzy. He told me my BP not being stable was to blame for my weak spells. ( BP has been fine other than increase with migraine pain ) He then told me my creatinine was now 2.44 and I would be looking at dialysis and going on a transplant list in about a year, maybe two. I'm so overwhelmed, I can't go 10 minutes without thinking about it. I feel great other than my usual migraines, usual kidney discomfort and pains and weak spells with dizziness that I'm guessing is the BP med. Does anyone have any suggestions on how to live your life without PKD consuming your thoughts? I greatly appreciate any advise.
That must have been a lot to take in in one visit. The BP information doesn't quite add up. Have you done the 24 hour monitoring to gain a clearer picture of what's happening? It sounds like that's what you need. The weakness/dizzy spells could be from anxiety, and changing your BP meds won't help that. It could also be a number of other things, such as blood glucose dips. This in turn could trigger migraine.
Predicting when kidneys will fail is not easy and people can be stable at a particular level for years. Your consultant could be wrong about the two year projection. I've been at 30% function for a year now, having been warned last year that it would fall by 6% per year. It's just a best guess and is as likely to be wrong as right. I read about a man who was at 26% for several years. If you do need a transplant, you're young and otherwise healthy. You will do well and will continue with a full life afterwards.
As for how you live your life without PKD consuming your thoughts, that is indeed difficult, especially when you have just received news such as you have. I think I could forget about it for a bit, but hauling this enormous liver around rather serves as a constant reminder. My husband has said that it consumes his thoughts, too, and he has to keep busy or find distractions for some respite. He finds people asking him about my health particularly troublesome when he's socialising and trying to forget about it for an hour or two. He's asked some close family to avoid doing this. We'll tell them when there's something to tell.
Mindfulness has helped me at times, and distractions have their place, too. Try to stay positive and remind yourself that your thoughts are just that: thoughts, not necessarily facts. Don't follow a rogue thought down a path to misery. I need to give myself a kick quite frequently if I start to do this.
My husband likes to quote Mark Twain: 'I've lived through some terrible things in my life, some of which actually happened."
We will multiply the trials which we go through in life if we constantly anticipate the worst. Concentrate on facts (for now you're dojng fine), try to maximise the time you spend doing things you enjoy, be happy that you feel well and make the most of it.
Take care,
Chewitt
Thanks for the response. You seem to be very knowledgable. Do you mind me asking how long you've been dealing with PKD and what your progression has been like? I'm 47 and have had various degrees of pain, discomfort for about 8 years, roughly 4 UTI's and 1 Kidney infection and around 4-5 bleeding episodes. Up until December 2014 my labs were good and it seemed to be progressing slowly.
I was diagnosed nine years ago when I was 40, though of course we have all always had PKD. My enlarged, cystic kidneys were first spotted on an MRI scan of my hip. My function was 77% at that time, and is now 30%. My kidneys have grown steadily over the years and the situarion is complicated by my unusually massive liver. Both cause me pain, not least because my liver fills my entire abdomen and is crushing everything else in there. I've been told I will have to think about a dual transpalnt within the next couple of years.
I tire very easily but am usually reasonably well. I had an episode of bleeding into kidney and liver cysts a few years ago, which was agony. I now avoid all strenuous activity and lifting, but am still able to enjoy walking my dogs. Apart from a possible UTI/kidney infection in January, I don't tend to have UTIs, though did have a number before I was diagnosed, including as a child.
I'm glad you're finding things a litle easier. One day at a time as Kendie says, and remind yourself of all the positive things in your life as often as you can.