Polycystic Kidney Disease (PKD) Support Group

Hi Gwen, welcome to the site. I'm a bit puzzled by the result of your ultrasound scan, as the cysts of PKD show up pretty clearly, if that's what it is. Given your family history, a diagnosis should be quite straightforward. Did the sonographer say anything about cysts? Also, the cysts would be bilateral, not just on one side. I guess you'll know more when you see the nephrologist.
Good luck, and we're here to support.

hi Gwen and welcome.
what is on your kidney may or may not be PKD, the good news is there are better ways of dealing with it now and there is a lot of support for you if you have it. there are drugs in human trials that may slow or stop the growth of cysts, possibly preventing PKD from ever going into kidney failure, thereby reducing the need for dialysis and transplant.
whether you have PKD or not, best to live the healthiest possible way, no smoking, drink in moderation or not at all, a good diet with lots of fruits and veggies, cut back on salt, fat and sugar, get plenty of fresh air and exercise, if your blood pressure is high get treatment for it, avoid aspirin or other NSAIDS, Tylenol is safe. when in doubt check with your doctor.
again, welcome and we hope to hear a lot from you.

Hi Chewitt, yeah I agree it should have been straightforward, and I was expecting to hear there were cysts, hoping not to hear that, but not expecting one to be so big, so I'm confused too. The sonographer, during the scan, said nothing about them, no hint on what she was seeing. The results were sent to my endocrynologist, where I learned of it when he read the report. (in a thick accent, and when he read it I kinda went into a sort of shock, being the first confirmation of it) But I'm waiting for the neph since one is almost the size of the kidney itself, 'just to be sure'.

Hello spiderwoman, it's good to know things may be better than back in Mom's day Even then, just before she died, her dialysis center had switched over to new machines. So far in my readings online I only saw the same two end stage options she had, that's why I was glad to find this site.

Thank you both :-)

Hi Gwen and welcome! This really is a great group of caring people from all walks of life and we're in all stages of PKD, from just diagnosed kids of all ages to dialysis patients and those who are many years post transplant, so we've been trough the gamut.

Ultrasound technicians generally can't tell you what they see (although I've managed to get them to show me the screen every time by telling them what the diagnosis was or the expected diagnosis is....I guess I'm just very convincing). It's frustrating to wait for the appointment with the nephrologist to find out exactly what is going on. Some deep breathing exercises will help with the stress. Right now there's nothing you can really do but wait.

But in the mean time you can start doing all the right things for your kidney health, cutting back on the sodium intake (to 1500 mg per day), increasing your fluid intake (especially good old fashioned water), eating healthy with whole grains, fresh fruits and vegetables and remembering that a serving of protein is a deck of cards, not a 32-ounce steak, and getting some exercise (walking works just as well as running; adding some gentle weight training to help build up bone density helps). Watch your blood pressure, 120/75 is the goal (or lower as long as you don't go too low). Be sure to get lots of fresh air and lots of love too!

PKD may be something we have, but it doesn't definte who we are. Medicine has changed dramatically even over the past 10 years, let alone when your mother went through dialysis. We have all sorts of very effective blood pressure medication that can help forestall dialysis for a period of time and protect the kidneys from harm and we actually have human clinical trials for drugs that are designed to not only reduce the formation of new cysts in the kidneys, but also shrink the size of some existing cysts! There are also some initial trials for different medications that seem to have the same effect with the liver cysts, an extra-renal complication of PKD and the medical community as a whole is more aware of the extra-renal complications of PKD and now look for them more readily, screening for cerebral aneurysms on a regular basis and reacting quickly when a PKD patient arrives in the ER with the worst headache of their life (classic sign of a possible ruptured aneursym) or ripping chest pain (sign of a thoracic aortic dissection, also a rare complication of PKD....that one runs in my family). There's a lot of research going on and more is being found and happening every day so there's a lot of hope as well.

Hopefully the ultrasound will show a single cyst that can be removed and never cause another problem again (I figure that's the best case scenario). All the worry will be for naught and the healthy habits you'll have developed will stay with you and serve you well. And if it turns out you have PKD, you have a ready made family here, ready to help and support you in any way we can.

Just let us know what we can do!

Best wishes,
Ruth

Hi, Gwen!

Welcome!

It sounds like you're not receiving the best quality of information and that may possibly affecting your thinking process.

If you're wishing that it's not PKD, be careful, it may be something worse! :-)

In any event, it seems like your "task" is to get a solid diagnosis, and then to find out the next steps for you to take.

All the Best!
Coach Richie

Hi Gwen,
Glad to meet you! Im new here too! about a few days, and when I stumbbled upon this site and then found the group man was I impressed> Most chats bs about all sorts of things not even related as to Y were all here. In a way were all family, related by one gene, well possibly 2. But anyways welcome any questions, as I have learned, are valued (whether you think their not worthwhile of someones time)answers kind, promt and with respect. Feel free to talk away!
Your Friend Chasity

Good point Coach, I guess I was hoping it was something easier, but we all do :-) and I admit I wasn't thinking too clearly after getting the ultrasound results from my endo. When I go back I'll be asking for a copy of the report, now that my head is back on a bit straighter.

Gwen , I just want to mention that technicians are not allowed to make any comments about what they find. while they may know as much as the doctors do about reading an ultrasound or whatever test they are running, they don't have the malpractice insurance that doctors do. if they tell you its one thing and you learn it is something else they can be in a lot of trouble.
once during an ultrasound my technician said under his breath, "wow, I can do my homework on this". I didn't ask what he meant because it wasn't said for my ears.

Yeah while I was on the table she asked me why I was there. I told her about the history and what I expected, and she didn't say anything to me about what she was seeing, but after it was over and I was getting ready to leave, she had left the screen up with the images, so I thought to myself, "Maybe she's trying to let me see." but I didn't know what I was looking at, so I didn't really look.
I hadn't expected her to tell me anything either, so I didn't ask her. Just let her do the scans. :-)

When it comes to imaging studies, I usually just ask to see what the scans show (as you may infer, I'm not exactly shy when it comes to medical issues). I tell the technician that I know my diagnosis, PKD with massive liver cysts, and that I'm just curious to see how things have changed. Most of the time they breath a sigh of relief and are willing to show me the images and I generally point out the highlights (my spleen, which is noncystic, my very squished stomach (we generally makes bets on where it is....it's true location is still a mystery), etc. I'm well known at the hospital as I usually get all my imaging done (and actually seek out the CT technician if I need an IV started at any time between 7am and 3 pm; he by far the best in the hospital--uses a BP cuff set to 110 mg to get the veins to pop up).

It can't hurt to ask and if they say no, then they say no. I've only had one technician say no and she was grossly inept and could get a good image of my heart to save her life (kept accusing me of being a smoker; she couldn't manage to get a good image due to my cystic liver; no one has had a problem with it before or since). Otherwise I've never had anyone say no, but when it comes to ultrasounds, I have no idea what I'm looking at other than a series of varying gray blobs (a echocardiogram (ultrasound of the heart) is fascinating).

If you don't ask you'll never know what you might see.