Just diagnosed and very confused.

Connect with others who are living with PKD and share stories and encouragement.
Forum rules
Please note: This site contains user-submitted content, comments and opinions, and they do not necessarily reflect the views and opinions of the PKD Foundation. Information shared in the forums is not medical advice. Please consult your nephrologist or health care team for information and guidance specific to your health.
Narwhalian

Just diagnosed and very confused.

Postby Narwhalian » Wed Sep 09, 2015 6:04 pm

Hi everyone. I hope I can get some help and advice. Sorry if this is so long, i'm desperate for answers.

Upon getting a CT with contrast at an emergency room a few months ago, I was told by the ER doctor that I likely had Polycystic Kidney Disease. The CT description noted that I had "many" cysts on both kidneys, though it didn't specify the number, size or anything else. I went to my primary care doctor, who referred me to a urologist who looked at my scan and confirmed I have PKD, then said I should be seeing a nephrologist instead of him. Since then I've been battling with my insurance company to try and get an appointment with a nephrologist as I have SO many questions.

I'm 25 and have no family history of PKD. I have significant abdominal pain that has been going on for a while now, but increased quite a bit in the last few months. Kidney stones are very common for me.

One of my biggest questions is in regards to how fast cysts can grow. I had a CT with contrast about a month before the one showing my cysts (it was to assess a skin lesion, so nothing to do with my kidneys, but still showed them). No one remarked on my kidneys then; they were listed as "normal". Is it possible that I've grown so many cysts within such a short time (One month)? Or did the radiologist just ignore the cysts because they were focusing on a different part of the body?

Thanks in advance for any info. I'm in so much much pain every day and from what I've read, most people with PKD don't experience such intense pain. My kidney function is also just fine at this point.

-Søren

Posts: 59
Joined: Fri Dec 20, 2013 8:20 pm

Re: Just diagnosed and very confused.

Postby ganncamp » Fri Sep 11, 2015 7:12 pm

Hi Søren,

I can't answer all your questions, but I can try to address a few points:
No family history:
  • PKD is caused by a genetic mutation. It can crop up spontaneously, and that may be what happened with you
  • There are people who live to ripe old ages and die never knowing they had PKD. This is another possible explanation for your situation. High blood pressure is typically the first symptom to be noticed, so if either of your parents has that, he or she may want to be tested.

Explosive cyst growth in a month
  • I've not gotten a straight answer on cyst growth rate, but my impression is that a sudden 'boom' in cyst growth is highly unlikely. Instead, I'd go with the "not paying attention to the cysts" theory
  • I was diagnosed at age 41 from an ultrasound my GP ordered when I asked to be tested. But the ultrasound I had at age 30 (for the same purpose) showed "some cysts, but that could be normal." So it's entirely possible that even if a few cysts were noticed, they were overlooked if the Drs were focused on something else.

Abdominal pain & kidney stones
  • Unfortunately, neither of these things is uncommon with PKD. I don't have either of these symptoms, & so can't comment directly, but if you read other threads, you'll see people commenting that abdominal pain improves with exercise ('gentle' stuff like walking/running, swimming, etc. This is not the time to take up rugby.), increased water intake and "better" diet.
  • For kidney stones, my impression is that increased water intake will help here. Also, cut out carbonated drinks, and my Neph. specifically told me not to take Vit. C supplements because they're associated with kidney stones.
  • While I currently have no kidney pain, my Neph asks me about it at every visit. Not everyone has the pain, but you're not so unusual among PKDers. If you look around in this forum, you'll find a thread about medical marijuana for the pain. I don't want to scare you, but this is apparently a kind of pain that's hard to treat/help/address. I don't think my grandfather had much pain at first, but by the time he died, at around age 70, he was in a lot of pain. It seems to have increased as his kidneys grew and crowded his other organs. I believe some people have found relief through fenestration (draining) of their larger cysts, but that will be something to discuss with your Neph when you get to see one.

You didn't ask about this, but I want to pass on a few things (most of these told to me by my Nelp) to keep in mind until you see a Neph:
  • Begin weaning yourself from caffeine immediately. It makes the cysts grow
  • Limit your protein. I was told 1 gram protein/kg body weight per day. Digesting protein is hard on the kidneys
  • Make sure your blood pressure is under control. If it's not already okay, your GP can help you with this until you see a Neph
  • Drink plenty of water. I believe the current recommendation is for 1 gallon/day.
  • Remember that you're not alone. We're here for you.

Good luck.

Narwhalian

Re: Just diagnosed and very confused.

Postby Narwhalian » Sat Sep 12, 2015 9:45 pm

Hi ganncamp,

Thank you so much for your reply, I really appreciate it. I do believe I am one of the people whose DNA spontaneously mutated since none of my family members have ever shown signs. Your thoughts on cyst growth rate are very helpful, I feel less worried knowing that I most likely don't have some
super-speed cysts growing! That has been on my mind a lot, since it could be a while before I can see a nephrologist.

I live a fairly good life in terms of prevention; I drink tons of water, don't have excessive sodium in my diet, things like that. Since I don't have a car, I get excercise in the form of walking long distances quite often, although I've been unable to do that recently because of the pain :/

Medical marijuana gives me panic attacks so that unfortunately isn't an option for me. Are nephrologists usually okay with prescribing reasonable amounts of narcotics for this condition? Something like Vicodin takes care of my pain pretty well, and I don't need it every day, just on the days when my pain is overwhelming and I don't have the option of staying in bed. From my experience with other health issues I've found some doctors are fine with prescribing pain meds while others are completely against it.

Thanks again for your reply.

Posts: 1
Joined: Sun Sep 20, 2015 4:54 pm

Re: Just diagnosed and very confused.

Postby teddycauley » Sun Sep 20, 2015 5:12 pm

Hi, I was recently diagnosed. My father has PKD and is post transplant. For whatever reason I decided this year to get the ultra sound to find out whether I had PKD or not. I've had no kidney issues prior which was mainly the reason I felt no need to find out. Have a family hx of high BP and was over weight which obviously added to it. When I found out, I was freaked out. I can totally relate. I freaked out really because I saw what my father went through and thought the worst. I saw a nephrologist, Dr. Steinman in Boston. I would recommend getting to see a doctor quickly. The last thing you want is your mind to race with what ifs and worst cause scenarios. My doc shared with me how each case is so different and based on your current health and kidney function, really determine what the future is for you. I am debating joining some clinical trials that they are offering at beth israel deaconess medical center. Been tracking my BP closely since that is such a key indicator. Be careful with the pain meds.

lisccc

Re: Just diagnosed and very confused.

Postby lisccc » Sat Oct 10, 2015 8:29 am

hi all!
just reading this has helped me. I was just diagnosed about a month ago and already have an appt late October with a neph. I just turned 30 and have an extensive family history of pkd. my grandmom on dads side, my dad and his sister and brother. so I'm no stranger to pkd but when it's you, it's a whole different ballgame. the only symptom I've had is high blood pressure and I'm
assuming what was a kidney stone about twice in the past 2-3 years. I'm anxious as hell as to what the dr has to say but finding this site is eye opening. thank you.

Posts: 59
Joined: Fri Dec 20, 2013 8:20 pm

Re: Just diagnosed and very confused.

Postby ganncamp » Thu Oct 22, 2015 5:16 pm

Hi Søren,

Sorry to leave you hanging - I just now saw the question about narcotics. Since I've not experienced any pain, I really can't comment. But like @teddycauley, I urge you to see a nephrologist as soon as possible.

Khope

Re: Just diagnosed and very confused.

Postby Khope » Mon May 16, 2016 9:46 am

Last year I went to have a scan and ultrasound because of diverticulosis and found out I had PKD. I was super confused and afraid! But the doc said to live normally, eat normally (healthy), be active and that's it. I just went for a year checkup and my kidneys grew from last year. I'll be going for another scan to check on some of the larger cysts.
Thank you ALL for sharing on this forum, it helps tremendously to hear from others going through the same thing.
The main thing we all have to do is continue living life and enjoying every minute of it. This is something that we just have to watch ... like they say count our blessings!

Posts: 2
Joined: Thu Jun 09, 2016 9:29 am

Re: Just diagnosed and very confused.

Postby Rebel11 » Thu Jun 09, 2016 9:49 am

I'm 52 and just diagnosed. My father who is 87 is the only one in his family that has it. He either got it spontaneously or one of his parents had it and didn't know it. I am very familiar with PKD. There are now at least six in my immediate family that have been diagnosed. When it happens to you it's scary. I don't have the issues you have and I wish you were not in pain. My father has been on dialysis for 15 years and has no pain. His kidneys clearly are not very big because he's skinny as a pencil. My point is that this disease affects everyone differently. There are no guarantees. You may never end up on dialysis or need a transplant. I have a great doc in the Kansas City area. Dr. Redington. His words to me were "Live your life." I hope that your pain is manageable and don't let your imagination get the best of you. Although I just joined this forum seems like a good place to get support.

Cherlclarke@aol.com

Re: Just diagnosed and very confused.

Postby Cherlclarke@aol.com » Sun Aug 07, 2016 5:09 pm

As far as narcotics it all depends on the state that you live in. I live in WV and it is nearly impossible to find a doctor that will prescribe pain medication. It's funny that pill heads seem to have no problem finding pills but the people that truly need them have a heck of a time getting them. When I lived in FL I saw a doctor in a pain clinic and was able to get the medications needed to make it through the day.

Sniper

Re: Just diagnosed and very confused.

Postby Sniper » Mon Aug 22, 2016 11:42 am

I was diagnosed 2 years ago although I knew for quite some time that I had it. My mom had it, my sister and my niece currently have it. I just want to encourage anyone that's reading this to stay strong. I was afraid to go back for a follow up for the past two years. Finally I went and got my blood work done and met with my doctor last Tuesday. At best I was hoping that my function remained at 55%. Realistically I was thinking or Hoping that it only went down slightly. To my surprise, my doctor told me that my function actually improved. My blood pressure is still high so I can only attribute my increase to how I eat and exercise. And of course I believe there is a higher power at work as well. 5 days a week I eat oatmeal with lots of fruit. Salad for lunch and a reasonable homemade dinner. I cheat occasionally but I stick to this about 85%. Oh, and close to a gallon of water daily. Hopefully this can help someone else. Be well and blessed.

Next

Return to Living with PKD

These discussion forums are owned and maintained by the PKD Foundation. To learn more visit pkdcure.org.