Tuesday, October 30, 2012

Surgery scheduled

I went to see the Cardiologist (Dr. Chun Hwang) today. He wanted to squeeze me in for surgery on November 8th at 430am, so that's great!
I'll be having a catheter ablation, to fix my PSVT. Yes, I'm being totally lazy and making you click on links to read about what they are if you want to know ;) Basically, they'll put a wire catheter through my leg up to my heart and burn the part that is causing the arrhythmias. Poor Nate had to sit through all the possible bad outcomes, most of which are totally rare, but the doctor was great at explaining everything in great detail and very informative.
They said plan on staying overnight, but it could be outpatient if everything goes well after the 6 hours of bedrest (to help the incision heal and not bleed out).
As weird as it may sound, I'm pretty excited to get this done. It'll be so nice not to have to worry about it happening anymore!!

Monday, October 15, 2012

Fun times at the ER!

My heart likes to go crazy at random times (whether relaxing or working out). It's happened many times before, probably every few weeks or so, but usually not for an extended amount of time (that's only now and then). Up until now all they've been able to figure out is I have tachycardia.
A couple of years ago, the first time a big one happened was pretty bad, my heart was beating over 200 bpm, lying down, for quite a while. Went to the ER but it regulated itself before they were able to get the right tests or medications.
They ran a ton of tests afterwards at the cardiologist, but weren't able to find anything conclusive and sent me on my way.
Tonight it happened again for long enough to get to the ER and for them to get the EKG they needed. The tachycardia wouldn't stop or slow down, so they had to stop my heart with some drugs, just a split second of time, which would reset the electrical signals so it would beat normally again. They gave me one dose and it didn't reset, so they took more tests and then gave me a second, stronger one, which ended up working to reset it. It was an indescribable feeling, pretty bleh, painful and yucky, like my heart was 40 lbs and trying to escape my body ha. It made me really emotional for some reason, I wanted to cry but had no rational reason for it, I described it like pms! ;) 
The stronger dose worked and they gave me another medicine to make sure it would stay under control at least through the night, with strict orders to call their heart dr in the morning, who would get me right in. The Dr said they would probably want to do an ablation, where they essentially cauterize (burn off) the part of my heart that's causing the malfunction.
So that's where we are now. They said I can just go back to normal, just to watch for anything happening again obviously, and to make sure I get into the other doctor they recommended. I think that's all, Nate might have more to add since he was a little more aware of what was happening!

Thank you again to all my kind friends and family for your prayers, offers of help and sweet thoughts. I love you all so much and am truly grateful for you!

Sunday, July 22, 2012

Kidney Update

People have been asking, so here's a little update:
I've been having kidney pain off and on for a week or so now. Yesterday I was a little bit swollen, but this morning I woke up and my stomach was completely distended because my kidneys were so swollen, even my legs were swollen. It hurt to breathe because my diaphragm was pushing on them every time. I decided to go to church because I'd just be sitting around at home, so I wanted to just push through it. I can't really take any pain meds because it's hard on my kidneys (except Tylenol) and/or it just makes me sick on top of the pain, so I just avoid them usually.
I'm feeling a little bit better after a blessing and some rest. Obviously hoping things will be fine tomorrow, if not we'll call my kidney Dr and see what he wants me to do. It could be something as simple as a stone blocking things up, making things inflamed, or signaling something more serious like further progression of the disease (kidney failure). I really doubt that's the case, that's what I'm telling my kidneys, I think they'll listen don't you? :)

Wednesday, June 2, 2010


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)

Thursday, February 11, 2010

Hm, more interesting stuff...

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 :)

Monday, November 2, 2009


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.

Wednesday, September 9, 2009

Scheduled.. again.

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!