Hey guys!!! ?????ÿ
So, I was contacted in private message asking how I was doing, because I hadn't posted anything in a while.
I try not to bug you guys with trivial stuff except for cute jokes here and there. ????
But, I figured I should post something here to check in. :d
Here is my latest kidney update. I went in last Friday for my bi-annual ultrasound. (They keep tabs on me every 6 months for this kidney crap.)
Anyhow, as I suspected, the thing growing inside of my kidney is not a tumor. It's a cyst that has doubled in size in only six months. Due to its location, it is causing my kidney tissue? something in there to slowly separate. It is affecting my kidneys "structure". (Which explains my constant back/flank pain and why I was sick this past weekend with a fever and nausea.)
They are calling it a "complex cyst with septation". It was the size of a small pea 6 months ago. Now it is the size of a pinball. That may sound small, but, they take a look at what the kidney size is (10.9 cm) and where it is located. It just HAD to park itself in the spot where it has to interfere with things. Damn cyst!
I also have a cyst on my spleen that has tripled in size, but that one isn't causing issues. It better not!! ?????ÿ
My kidney doctor emailed me personally to let me know that he had read the scans and already put in the referral for me to go see the Surgeon/Urologist. My consultation is with him on July 30th. Hopefully I can get some relief!!
Kaiser was going to make me wait until OCTOBER to see this Urologist, but I called them and asked them if that might be a bit too long of a wait?
The urology nurse said that was indeed wayyy too long to wait for what I have going on and so they bumped me up. Phew.
The good news is my other kidney is just fine! I had a talk with it and told it to be a good kidney and stay healthy. Hopefully it listens because I have done every damn thing and then some that my kidney doctor told me to do in January 2019 when we first saw this coming. (Change diet to kidney friendly diet, lose weight, take my kidney meds and vitamins, etc...)
I have lost over 50 pounds since I joined the gym. I dropped down 2-3 pant and shirt sizes. I'm probably between a size Large and Medium. YAY!!!
It feels good when my clothes get too big and I have to clean them out of my closet!!
I will do whatever it takes to keep this disease at bay for as long as I can. I saw what my grandma, my aunts, my uncle, cousins and my mother went through with it. They all died way too young from it. I want to be the first one who outlives it. ?????ÿ
Anyhow, that is the latest. PKD sucks, but...it is what it is. I'm grateful that it's not cancer or something worse. ???ÿ
PS: Here's Squintin Tarantino Kitten!! Hamming it up for the camera. 
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Stay strong and get well soon!
Angel, get better and I hope your future treatments go well.
I am glad we don??t have to tell you to be your own advocate.
Thank you for this update.
Please continue to keep us posted.
Thanks so much for the update and information.?ÿ
I'm real sorry that you, and anybody else has kidney troubles.?ÿ
Praying for you.?ÿ
Nate?ÿ
Aww...Thanks, Guys! It means so much to me to know you guys care. 🙂 ?ÿ
I'll be OK. I'll update everyone once I hear back from the surgeon on what he decides to do. ?????ÿ
~Angel
Kaiser was going to make me wait until OCTOBER to see this Urologist, but I called them and asked them if that might be a bit too long of a wait?
The urology nurse said that was indeed wayyy too long to wait for what I have going on and so they bumped me up. Phew.
Kaiser did the same thing to me when I was diagnosed with a brain tumor; my primary care doctor arranged for a consult with the brain surgeons *three* months later!?ÿ I called the surgeons and the nurse said she'd get my scans to the surgeons and call me back.?ÿ An hour later she called and had scheduled an appointment for the following week.
@mike-marks Yikes!! How are you doing now??? ????
This isn't the first time I have heard this about Kaiser. They're SO good about some things, yet so BAD about others. They're great with getting me what I need for my dying patients. Never have to go through "red tape" for that stuff. But...
They wanted to chop off my father in laws leg! I guess he had something wrong with his knee. A simple knee replacement fixed it.
It was a good thing he told them to get lost!! ????
@mike-marks Yikes!! How are you doing now??? ?????ÿ
Five years now and I'm still kicking.?ÿ They treated it with radiation.
Ran into about a dozen of these plants the other day. https://pfaf.org/User/plant.aspx?LatinName=Althaea+officinalis
?ÿWas wondering if the anti-hemorragic properties would help with your ailment. They've been used for milennia, and are the original marshmallow.
Would like to have grabbed a few for myself but, it was someone else's property, and someone else's crew I was working on.
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In my prayers.
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?§ Kidney Update ??
I had my phone appointment Thursday with my Surgeon/Urologist. He's going to do a CT Scan/other tests because he thinks there's more cysts in there. He says the ultrasound only gives you a little picture where as a CT scan is going to give you the whole picture in detail. He needs to see exactly where it is, how many more I have, etc...before he can figure out how to proceed. And this particular cyst is located in/on a kidney globule? Something inside the kidney infrastructure. It's growing too fast. He said his concern was because it went from a tiny thing to a big thing in 6 months. Plus I have cysts on my spleen and he wants to check my liver again for any cysts/abnormalities.
He says normally they like to leave cysts alone if they can. Popping/Draining cysts causes more to come back. But, because of the complication and what this particular cyst is doing, it's ranked up higher on a "cyst grading chart", so he wants to do something before it damages my kidney. If they leave it in there it's going to permanently damage the kidney. Unfortunately, if they drain it it can come back. This is common with PKD. But, you have to be diligent and on top of it. I may not have a choice in the matter. It may be one of those annoying cysts where it has to get drained from time to time. He said otherwise you'll lose the entire kidney. He doesn't want that to happen! Neither do I!?ÿ
I like this doctor!! He knows what he's talking about and he actually listens to me, and says *I* know what *I* am talking about. He said that the other doctors and geneticist were all saying that I didn't have PKD, but he says I think you DO have PKD. It's too dominant in your family. He said the other doctors, they have to do their "protocol" to diagnose you with PKD, and they don't like to "Jump to diagnose". Make sense. But, a year and a half later, PKD is doing what PKD does. Scans don't lie.
In 2019 when they first saw the cysts, they didn't think there was enough cysts to diagnose me with it. Plus they were very small. Like the size of tiny itty bitty BB's.
He agrees with me and is pretty sure this one troublesome cyst was infected a few weeks ago. That's why I was sick. I told him I have the same exact symptoms/results that my mom had when she'd get an infected cyst. Now I know what my mom meant by everything she use to describe, kidney wise! And they use to tell my mom she was crazy, it was all in her head. She'd tell them to F**k Off!! ???ý
Doc also said I am doing everything right by being proactive about my health, diet, exercise, etc...
He just doesn't want me to get my hopes up that it will stop/slow down the disease. He also doesn't want me to fall for "home/herbal remedies" that are floating around out there that people fall for that make them think it will stop/slow this disease. NONE of that stops cysts from growing. (As we knew). But it's always good to be in the best health one can be in for when this disease does progress and causes issues. And for that I am thankful. ???????????
So, today, Sunday, I am headed up to Portland to the "Big Hospital" for my CT Scan. This is a good thing because last night, it started to bleed. Ugh...Maybe they'll catch that on the CT Scan.?ÿ ?????ÿ
