Nettie and PKD

Oops!

2010-06-02T15:17:00.000-06:00

Haha I apparently forgot to update after my last appointment ;) I think it's because I updated it on Facebook, oops, need to remember to do both!

It was basically just a quick checkup, he said everything felt okay on the outside (kidneys were the same size, not growing too much yet), and if my blood work came back good then I wouldn't need the ctscan until next year or so, unless there were any problems before then.
The blood work all came back "good", so my kidney function was still high, etc. and no major problems.

Something I keep thinking about is that a few years back someone nearby needed a kidney transplant, so I decided to go get the blood work done and see if I was a possible donor.

People often ask me how I'm doing as far as the aneurysm stuff goes, and I'm really 100% recovered from that, as far as I know. I don't have the headaches anymore, which is great. I'll have a follow-up angiogram in August, in which they'll check the current aneurysm and make sure it's scarring up nicely (with my fancy $32,000 platinum wires!), as well as check every other artery in my head to make sure there are no others, or new ones forming. From there, if it all looks good, I won't have to have another angio for another 5 years, since new ones take at least a few years to form and be a problem.

I have random kidney pain every now and then, sometimes from a stone, or the cysts, or stretching of kidney/cyst tissue apparently causes pain as well. So I try not to worry about the pain, unless I have a fever lol, otherwise there's not much I can do but tough it out.

That's about all I can think of to update for now, things are going great and I still feel like a normal person (ha as normal as I'll ever be :P)

Hm, more interesting stuff...

2010-02-11T15:20:00.001-07:00

I was doing some reading today and came across an article that said this:
"The number one cause of death of individuals with polycystic kidney disease is left ventricular hypertrophy LVH, or enlargement of the ventricle muscle of the heart."

This made me curious, because my mother (and her father as well) died of Congestive Heart Failure at 62 and 61, respectively, and I wondered if it was linked. So I googled it, and I found quite a few articles and patient references to PKD related CHF.

"Elevated blood pressure and increased left ventricular
mass are associated with congestive heart disease." From the PKD.org website.
Anyway, just another interesting thing to add to the list of things to watch for. I'm just so curious because my mom was never diagnosed with PKD, but from what I've read it varies in degrees, and some people don't even find out they have it until quite later in life, but by that time she had CHF.

I have my next appt. with the kidney doctor on the 28th this month, he wants me to have a follow-up CT-scan to see how the disease is progressing and just make sure everything is good. Will update again then :)

Update!

2009-11-02T10:31:00.000-07:00

Just wanted to make a quick update, since it has been a while!
The surgery went great, textbook. My surgeon has been awesome. The headaches that came because of the surgery have pretty much gone away completely. He said it's normal to get them for a few months still, and I get a couple here and there, but nothing big anymore.
It's so nice to have everything done with and get all back to normal!!
I have another follow-up with the surgeon in December just to make sure everything is going okay, I'm on aspirin until then for a slight blood thinner.
I'll have another CT on my kidneys in Feb. and a head angiogram either in the spring or fall, to make sure the aneurysm is clotting as planned. That will give us a new "base" to look at, because I'll have to continue having CT's on my brain every few years to see if anymore creep up (which is, unfortunately, quite possible).

I did have a little "incident" a few weeks back.. I ended up in the ER because my heart was going a bit crazy. They hooked me up to some machines and my heart was beating over 200 bpm, while laying down in bed ha. (normal is about 65 for me). Anyway, they had a giant needle ready to shoot me up with some stuff that would stop my heart, then restart it at a normal pace, but as they were hooking me all up it finally slowed back to normal. It happened a couple more times since then (and before then actually), but nothing as crazy as that night. So I'm waiting to see the cardiologist (yay another doctor! ha), because apparently that's not normal for someone my age, etc. So we'll see what's up with that! Not sure if it's PKD related or not, possible though.

I'm so thankful to have found such awesome doctors and surgeons to take care of me, they have been amazing.
I'm also immensely grateful to all of my family and friends, neighbors and ward members, who have prayed for me, fasted, brought meals, and just shown so much love in many ways!! THANK YOU!
I'll keep updating as I find anything new.

Scheduled.. again.

2009-09-09T18:32:00.000-06:00

We met with the new surgeon (the endovascular surgeon, Doctor Jacobs) yesterday. He went over everything with us and was certain doing the coiling would be the best method. We initially thought the surgery wouldn't be scheduled until the end of October, but they called back today and said there was an opening this Tuesday, the 15th, so that is set. yay!
They started me on Plavix today (blood thinner), have to be on it for a week before the surgery. And I have to go see the Neurologist (different from the surgeon) in SLC tomorrow afternoon for a pre-op evaluation, I think it's just because they want my money... hahah ;)

The (short version) procedure:
They will give me a general anesthetic, go in through my leg, insert a stent (a small, mesh-like tube that will support the artery, as well as block the aneurysm clot that will form, from coming out) in the artery, and insert the platinum coils, both of which will stay there permanently. The coils cause blood to stick to them, eventually just causing a scar in that area. I will then be moved to the ICU overnight, and sent home the next day, awesome! He said I'll be able to be up and around some, and be back to normal within a week if not sooner.

Aah, I'm so anxious to just get back to "normal", go back to the gym, lift stuff, etc., etc. So glad it's getting closer to that point now!
Thanks again to everyone for all the prayers and support through all this crazy stuff! I can't thank you enough!

Postponed

2009-08-27T16:12:00.006-06:00

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!

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

2009-08-20T18:06:00.004-06:00

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.

More info.

2009-08-12T12:34:00.003-06:00

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."

http://www.pkdiet.com/pdf/otcs/aspirin/Patients_Manual.pdf

2009-08-09T16:31:00.004-06:00

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.

Links

2009-08-09T16:16:00.003-06:00

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!

http://www.pkdiet.com/ 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.
http://kidney.niddk.nih.gov/kudiseases/pubs/polycystic/ great info
http://europkdfriends.yuku.com/topic/16 (**Graphic images of PKD kidneys, I haven't even looked at all of them, can't handle it yet lol.)

Urologist

2009-08-08T10:26:00.000-06:00

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.

Few new things and lots of waiting.

2009-08-04T18:14:00.000-06:00

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.

Food glorious food!

2009-08-02T21:39:00.001-06:00

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 PKdiet.com 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:

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

A whole new world!

2009-08-02T21:19:00.000-06:00

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 pkdiet.com (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!