Thursday, August 27, 2009


We had an appointment with the Neurosurgeon today, to discuss the surgery tomorrow, etc.
Apparently he hadn't looked at the actual films from the angiogram (he was out of town, so they just read him the report the radiologist had written up). So when he looked at them today while we were there, he realized it was in quite a complicated place, he said it was pretty rare to have them occur here. So it was decided, after much thought on his end, double checking, as well as 2nd opinions from his colleagues, that surgery/clipping would not be a good option.

The aneurysm hasn't formed inside the dura (the lining on the brain basically), but under it, inside my "intra-cavernous sinus", which is a bone surrounded area near the brain, that the carotid artery runs through, as well as the optical nerves. If he were to go and try to clip the aneurysm from there, it would cut my optical nerves as well.

The best option would be to coil it, which is done endovascularly. They would go in through my femoral artery, just like the angiogram, and insert a wire, which would then insert multiple coils of platinum wire inside the aneurysm, causing it to clot. Generally, clipping is best for aneurysms in the brain, because coiling isn't always 100% effective. The blood can work it's way around the coils, causing more growth of the aneurysm, and possible rupture still in the future. But in this case where mine is located, if it were to rupture it wouldn't cause death like it likely would in the actual brain, somewhat less serious complications would occur.

I have an appointment with the neuro-radiologist Sept. 8th for a consultation. He will make sure he agrees that is the best way to handle it, and we'll go from there. It will likely be an outpatient procedure since it's just going through my leg, so that would be great!
So for now he said to just not to anything too strenuous, heavy lifting, etc. but not to worry about it too much, it will be okay until then.
I'm probably missing some details or something, but we just got back and are trying to process all this, so we'll keep you all updated!

Thursday, August 20, 2009

Aneurysm... I mean, really? come on!

I went to see the nephrologist yesterday (Weds) about the PKD and we just asked all of our questions and he asked his. He then asked if I got headaches, I said occasionally, but nothing serious. He decided I needed to get a brain CT scan, because PKD can cause aneurysms. I tried to talk him out of it, thinking it was no big deal of course.. but he insisted.
So he called me this morning around 10am to let me know that I actually have a large aneurysm in my brain that needs to be taken care of immediately. He said it's big enough that it could rupture, but it could be 1 or 2 days, or 2 weeks. So I'm currently waiting for the neurosurgeon to call me and schedule the surgery. I was told my nephrologist talked directly to the neurosurgeon that he wanted, so I would be seen quickly. I don't really have much other info besides that right now.
Any prayers would be greatly appreciated, and so many thanks in advance.

Wednesday, August 12, 2009

More info.

I've been asked a few times about genetics, and testing and such, and I read a great "booklet" today, by the PKD Foundation, that explained these things very well, so thought I'd share. I'll color the quotes.
Also, I forgot to say earlier, when I saw the urologist, he did a kidney function test and told me my kidney function was still excellent, even better than his own.. ha. So that was great news.

-People have asked how you're tested for PKD, if I'll have my kids tested, or if my family can just have their blood tested somehow, here's the answer:

"Ultrasound and CT scan are the most practical screening tests for ADPKD. Genetic testing of a patient’s DNA is available. This testing scans the
individual’s DNA isolated from a blood sample and looks for mutations in the PKD gene.
However, this test is extremely expensive and mutations are found in only 60 – 70 percent of
samples again giving us a high false-negative rate."
"The limitations of all these methods are that the cysts have to be large enough to be seen. Many
patients, particularly those with ADPKD2, do not have cysts large enough to seen until they are 30 years of age or older."

-Since we're unsure which of my parents have/had the PKD gene (not that it matters), people have said, maybe neither of them had it, or maybe they were just carriers. This answers that question:

"The gene for ADPKD is dominant, which means there only has to be one copy of the gene
passed on from either an affected mother or father to cause the disease. There is no carrier state
with a dominant gene – it does not hide and come out in a later generation. So, if a person has
the gene, at sometime in his/her life at least some of the symptoms of the disease will occur.
However, that does not mean that everyone who gets the ADPKD gene has the same signs or
symptoms, the same age of onset, or the same course of the disease. In fact, there is a wide
spectrum of severity with ADPKD. At one end are children who are diagnosed before birth or in
the first year of life with cysts and/or big kidneys, and at the other end is the person who has few, if any symptoms even when they are very old. Most people who have the ADPKD gene fall in the middle and at some time will have some of the signs or symptoms associated with ADPKD."
"There is a high probability that many people with a very mild
form of ADPKD are unaware of their status and thus are never diagnosed."

Sunday, August 9, 2009

Yesterday I made a spelt Irish soda bread recipe, it turned out pretty good, it's been nice to have bread!
I've been really tired the last few days, Nate thinks I'm not eating enough calories, which is probably true, it's just hard to get them all in with what I can eat! But I'm trying. I have to get in the habit of tracking everything I eat, and making sure I get enough. HA big difference from before where I needed to not eat enough ;) Since I got sick originally, I've lost around 15 lbs. So that's one nice thing about all this! :D
I'm drinking tons of water, with lemon, which is supposed to help the kidney stone, and help the cysts as well. I've found it's easiest to drink warmish water.. the cold water from the fridge is too shocking to just down it all like I need to.
Things are going okay, still in pain but I'm just adapting to it and trying to just get used to it, since from what I've read it won't be a novelty to be in chronic pain down the road. woot!
All in all.. it's all good.


Everytime I talk to someone about this lately, it seems they've gone and done a bunch of research online about it. I figured I could save people some time and attach some links for their reading enjoyment.. ha ha! this is of course my favorite site, as it has so much detail into what is good/bad for my kidneys/liver now, recipes, etc. great info (**Graphic images of PKD kidneys, I haven't even looked at all of them, can't handle it yet lol.)

Saturday, August 8, 2009


My fam doctor got me into a urologist, because they wanted me seen asap, since I was still having so much pain and a fever as well. I went to him on Weds. He explained a little more about the pkd, and read through my CT scan report with me, which said I also have cysts on my ovaries, a slightly enlarged liver, and that the enlarged/hemorrhaging cyst on my left kidney could also be contributing to my pain, on top of the stone. woot!
He was mostly concerned about the kidney infection and stone at the time, understandably. He recommended I come in for surgery the next day, to get the stone taken out, but I decided to wait it out. Which is where I am now.. waiting.

Tuesday, August 4, 2009

Few new things and lots of waiting.

Today I called the nephrologist to see if they would be able to get me in soon, they said it depended on the referral from my Doctor (which I made sure they knew was urgent), and set an appt. for Sept. 2nd. Obviously I didn't want to wait that long while I was in pain and had no idea what was going on! So, I called my doctor back, and had him explain more of what they saw on the CT scan, which was done on Friday, he also said he would call the Neph tomorrow and make them get me in asap.
So on the CT they saw "a few small cysts on my liver", which from what I've read is an incidental finding, but it does limit, even more, what I'm allowed to eat (no soy for sure now).
It also showed that on my left kidney (where I'm currently having all the pain), is an enlarged cyst that has hemorraghed, probably because of the infection, but no idea for now. But there were also two small stones, one that wasn't obstructing anything, and one that was right in the line of my ureter.
So! Knowing that information made things a little more interesting, stressful.. but, what can ya do. So hopefully I'll know in the morning if I've got an appointment or not.

Sunday, August 2, 2009

Food glorious food!

I decided I don't want to deal with kidney failure and die anytime soon, so I'm going to do all I can to prevent more cysts and keep my kidneys as healthy as possible.

So on it has some awesome lists of exactly what I should and should not eat, as well as some helpful recipes (thank goodness!)
I will be going on an "Alkaline Diet", which will be about 80% Alkaline and 20% Acid, neutral protein (0.6gms a day) and low sodium (1/8 tsp a day, or about 1200 mg), no sugar, plus 3 liters of water a day.
To sum it all up in a nutshell.. I'll be a major vegetarian and pretty much eat fruit and veggies all day long.. at least I'll get super fit right? haha

I can't have any of the following foods:

yeast (so no bread, unless it's made someway without yeast, and sugar, and wheat.)
dairy (although I can allow myself 1 oz. of cheese now and then if I really want.. that's the size of a dice)
anything acidic (other than lemons and pineapple, properties in them are super beneficial and outweigh the cons)
You can go here if you'd like to see more of what the list of good/bad foods are. Pretty fun! ;)

A whole new world!

It all started with a UTI, which turned into a kidney infection, which wasn't getting better.. So the doctor ordered a CT Scan, and it revealed a kidney stone, as well as the fact that I have PKD.
PKD stands for Polycystic Kidney Disease. He couldn't tell me much about it because he's just a general practitioner, but told me I need to go see a nephrologist asap.

So after the phone call, we looked up the info on PKD and this is what we found:

"PKD is characterized by the presence of multiple cysts(hence, "polycystic") in both kidneys. The cysts are numerous and fluid-filled cysts resulting in massive enlargement of the kidneys. The disease can also damage the liver, pancreas, and rarely, the heart and brain. The two major forms of polycystic kidney disease are distinguished by their patterns of inheritance."

Mine is Autosomal Dominant, meaning it's genetic, so one of my parents had/have it, and 50% of my brothers and sisters have a chance of having it as well.

"When PKD causes kidneys to fail—which usually happens after many years—the patient requires dialysis or kidney transplantation. About one-half of people with the most common type of PKD progress to kidney failure, also called end-stage renal disease (ESRD). PKD can also cause cysts in the liver and problems in other organs, such as blood vessels in the brain and heart. There is currently no cure or treatment for PKD."

Probably needless to say, we were a little worried and upset.
But, after some research we were able to find this website (and one other article), which explains in great detail about how you can control your diet and in turn greatly control the health of your kidneys, and developement of new cysts.

Basically what it comes down to is, there's a LOT of foods I can't eat, and I'll be making a pretty drastic change in diet, but hopefully it will help and I won't have problems!
We have to meet with the nephrologist now and find out all the details, as well as how far the disease has already progressed, which will give us a lot more info on how to take care of it!