Heath Update + Why I'm Not Mad at the Doctors Who Missed My Kidney Cancer at 29
ฝัง
- เผยแพร่เมื่อ 13 พ.ค. 2024
- Memoir release, email list: katiekickscancer.com/
Chubbyemu video on my story: • What Was Growing In He...
My non-profit, COA Chromophobe and Oncocytic Alliance: kidneycoa.org/
Timestamps
0:00 Introduction
1:42 Why I'm not mad at the doctors who missed my cancer
6:02 Writing a memoir
7:24 Chromophobe and Oncocytic Tumor Alliance - my non-profit
10:30 Health updates
16:17 Having a complex medical history
Wow!!
I came from the chubbyemu video, and I am very happy to see you survive.
Great video.
Much love from the MALDIVES!!
Same here!
My business partners wife went through a similar situation with cancer, but she unfortunately did not make it. She was told by numerous doctors she was fine and she was worried about nothing. The final specialist she went to several states away, after having problems for nearly 3 years, immediately knew what was wrong and said sadly it was too late at that point. She died 24 days later.
Oh that’s terrible,I’m sorry, you know your self when something isn’t right with your body. I’m sorry for your friend, she tried to get answers. It’s sad, hard for you too, thanks for sharing.
This is a huge reminder to all healthcare staff to TREAT THE PERSON, not the ranges. My blood pressure normally runs low, and I always have to advocate when it rises to 120/80 in that's not a normal blood pressure for me. I'm usually high 90s systolic and high 50s to low 60s diastolic. I'm an ER nurse and one new nurse wanted to drastically drop a frequent flier's BP to normal range. The patient's baseline is 200 systolic, and dropping their blood pressure too rapidly can cause more harm than good. That nurse dropped it to 140 systolic and the patient was nearly comatose.
As a European it’s so weird they jumped to anxiety and psychiatric problems instead of ruling out every physical problem first. And yes scanning for cancer is not the best thing. But there are blood tests that can be done or even an abdominal echo would have been able to find this tumor. And those things are very reasonable to do in those situations.
I’m British I was sent to the hospital by mr GP/primary doctor. My blood and urine tests were clear. The CT scan revealed that I had a scan mass on my kidney.
It always makes my day when I see your smiling face. My own worries pale in comparison. May good fortune always smile on you in future, you really do deserve it.
Thank you so much
You are real Champion. You defeated a rare Cancer. Very happy to see you fit and fine.
YOU ARE REAL. OMG. YOU ARE ALIVE! YOU ARE GOOD. I DON'T KNOW YOU BUT I'M SO HAPPY YOU ARE GOOD AND WELL AFTER SEEING THE VIDEO ON EMU. YOU DID A GREAT BATTLE, A SUPER MEGA RARE BATTLE, NEW BATTLEGROUNDS, AND YOU WON!
❤SO GLAD YOU MADE IT & DIDNT GIVE UP!!!!!! CONGRATS ON YOUR ORGANIZATION!!!!!! ❤
I was really diagnosed kidney cancer 4 weeks ago. Had weird pains in my abdomen. My doctor sent me to the hospital, assuming it was appendicitis. CT scan revealed it was kidney cancer. To say it was a shock is an understatement. I have surgery next week. As my left kidney has to be removed. I have been avoiding watching and reading about this. Find it a bit unsettling. Thanks for sharing your journey.
I hope your surgery went well , good luck x
Praying for you. I hope that you are healed and I believe your surgery will be a success
@@deborahcraven6435 Many thanks. Had surgery a few weeks ago. Just resting.
@@dfjr1990 Many thanks for your kind words. I’m getting better each day. Totally appreciate your kind words of support.
@@tasneemakhtar9961 absolutely! Have you considered black seed oil? Please look it up people are saying that it is very helpful in curing things in the body.
I had to stop and write this half-way thru watching this. You have always impressed me from the very first time i saw a post of yours with your maturity and even keeled disposition. You are wise beyond your years and always rooting for you. And i must say i personally feel it is much worse getting a cancer diagnosis when your younger (20-30's). I am an RN and use to work on a transplant floor. I was in my 50s when i got a cancer diagnosis and i always felt i had a good perspective being a nurse and seeing younger people getting bad diagnosis. I felt like i had lived a relativity long life and a good one. Happily im good for now. But i want young people lime you to get your long life too❤.
Thank you so much for this comment and your kindness. Getting cancer in the decade of decision through your 20's/30's certainly hasn't been the most enjoyable thing on the planet. But, it's also given me a perspective I'm very grateful to have. I hope to be able to live a long time and if...I mean when... I do, I'll be fortunate to have been given this perspective and appreciation for life that I have so young.
Wishing the very best for you as well and that good for now, extends to a very long time. Thank you again for all of the support.
I would rather go through extensive testing than not be tested and having a deadly disease
@@user-wd3po8sd7k I would too in most cases. I think patients should be given the trade offs and options to be able to help make informed decisions about their care - including diagnostics
To use my case as an example, if we jumped full speed ahead and removed the lesion in my bladder right as we found it and say I ended up with a rare complication of having the opening from my ureter close, causing permanently damaging my kidney.
If it ended up being a deadly cancer, worth it? A difficult choice but you might be able to make the argument.
If it ended up being benign and not causing problems, it definitely would not be worth it. And would have created a problem by intervening.
IMO patients should be given the options and information necessary to make informed decisions. Our current system and the short appt times doesn’t support that super well but I’d love to see it change.
Katie, fantastic job, I have been diagnosed 4 months ago with Stage 4 Renal Cell Carcinoma it is a Sarcomatiod variant, very aggressive, and fast moving, has now moved into my lungs, I too have a team here with MD Anderson, I can not say enough how great they have been, prognosis is poor, but 2 weeks ago I was put on Cabo (Cabometyx), I dont know if its the Med or in my head, but 3 days after Cabo, I feel normal again, appetite is back, Im gaining pounds, (lost over 20 pounds), just want to say watching your videos is giving me hope, maybe just maybe they can get it under control and i can have a few more years left, Thank you and keep up the great work.
My father is also on Cabo (Cabozantinib) and he is also feeling better with appetite coming back to normal and gaining few pounds of healthy weight. Scan not yet done to see the benifit but hopefully the magic pill works. I hope this medicine works for you and everyone goin thru this condition.
@@Nishbhau44 , had scans last week, no new lesions, the tumors are beginning to reduce, both on kidney and lungs, I had to ask the Dr twice to repeat, LOL, the combination Immunotherapy and Cabo I believe is working, I believe it will work for your Father too, tell him don't give up, we can kick this.
Now how is ur Father🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻????? God must bless him🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻
Came from the chubbyemu video. You are a fighter.
You are too nice. If I hear one more doctor tell a woman that it is anxiety... They never, ever would say that to a man. My cardiologist laughed it off when I told him I passed out in the shower. He said the water was too hot and laughed at me. I always shower in hot water, like most people do. His stupidity put me in the ER, and I almost died. I saw in his notes online about me telling him I passed out in the shower. Later, after I was in the ER, he immediately deleted that part of his notes.
Hi Katie you are a warrior. Thank God you are healed ❤ Cant imagine what you have been through.. found you because of chubbyemu channel
I’ve been seeing a nephrologist for the last few years because my eGFR was super low (sitting
I'm sure you will and for everyone else always make sure you go back and get checked for cancer coming back. My mom thought she was fine and didn't go back for checkup and ended up with stage 4 metastic melanoma, she died two years later. I'm also sure you know this but for anyone that doesn't cut out sugar and carbohydrates and do intermittent fasting and mix in some longer fasting.
My mom developed debilitating back pain and they found metastatic breast cancer. Mammogram was negative for cancer, but sure enough, the biopsy showed breast cells. She kicked ass for 10 years. A tragic reminder to treat the person, and not the ranges.
Wow. You are a survivor and I wish you all the best.
From Nigeria .good thing you had good doctors out there
Email added. Thank you for your story! I believe sharing ur story helps others be advocates for themselves.
Thank you so much
Katie,
Thank you for the wonderful video of hope and advocacy!!
You are representing many of us, so each time you post a video, we check in within ourselves to make sure we are living a meaningful and purposeful life! (No pressure:-)
What I take from your videos:
Stage 4 cancer diagnosis doesn’t have the same meaning that it did 25 years ago. We are living and thriving, and getting stronger. We are *partnering* with our physician care teams. We are learning how to live our best lives!! You bring courage and hope, and resolve!! Many thanks!!
Sending light to you and yours!! Super proud!
Bridget in Ohio
This reminds me of my (much less severe) case with my graves disease which took over half a year to diagnose with about 40 needle samples. The major symptom I attempted to get diagnosed was a fatigure/muscle-tearing pain similar to what you got after a gym excercise, and in some cases, paralysis caused by artificial sugars in "diet" drinks such as pepsi max and various confectionary. My mother didn't believe me because she thought paralysis meant you couldn't feel anything, and I could "warlk around" as if my legs were stilts. My mother only believed me once I got total paralysis and I literally waited it out until morning on the floor and yelled for her before she left for work and did "various torture tests" to ensure I wasn't lying and eventually got sent to the emergency room with some 14 hour long wait, which is understandable considering there was an elderly woman in the emergency room with her thumb chopped off in a melted icey zipped locked bag for over 3 hours.
According to the doctor's tests, my potassium levels was so exceedingly low that I should've died as I was well below the safety margin for "fatal" (I was at 1.4 units, fatal rated at something like 2.5, concern was 2.8, minimum for normal is 3.6) and one of my other (unrelated) GP doctors said his wife died to low potassium, rated at something like 2.1). They gave me several IV bags, made me drink 5 burning concoctions of potassium, magnesium, and of all things that they thought would help, orange juice concentrate, which honestly made it worse. Anyway they started me on carbimazole treatment which is standard for hyperthyroidism.
Anyway after some self research after my diagnosis, according to a book on thyroid disorders, it turns out the symptoms are very specific to me being asian which isn't widely known even amongst endocrinologists, and graves disease is mostly a disease that affects women. The entire section relevant to me out of a several hundred page long book was only 1.5 pages long, so it's no wonder that the doctors had difficulty and misdiagnosed me numerous times.
I'm technically not "cured" after half a decade, and in hindsight I've had symptoms for most of my life. This disease is apparently one that basically never goes away unfortunately, but I've found some weird odd advantages to having graves disease that I can trigger symptoms "on demand" in that it can temporarily boost my performance a little for a very short duration, but my stamina's greatly reduced. As a result I have chosen not to remove my thyroid, as in theory it is possible for me to live with a malfunctioning thyroid if the medicine producers decide to stop producing the medicine or something dumb like price gouging for profit, whereas if I got it removed I would have to heavily rely on slaughtered pigs to supply hormone replacement. The latter option generally results in better life longevity according to my endocrinologist, but some doctors disagree with that opinion.
With that out of the way, I now have other diseases and disorders to worry about, but at least my current lifespan is rated for me to live to about 45 instead of the former 30.
Definitely buying the memoir!
It might be helpful to write up a one page summary of your current diagnoses and your basic expectations during care (like a mini advanced directive.) I'm doing one myself after an ER visit last week went sideways because the doctor hadn't heard of my genetic disorder.
From one zebra to another, be well
I’ve never seen you before, but you kept me here thru the whole video. You’re so brave. This must have been terrifying. I’m sending good juju & hopes for a long,happy life.♥️❣️
your patience and rationale is admirable
This is my first time seeing your story and I praise the Lord for your healing ❤️🩹
Hope you're still doing ok ❤
@katieKicksCancer
We’re pulling for you. I’m sure you know this but wanted to mention (just in case):
Regarding eGFR & creatinine: I’d recommend no sugary drinks (Cokes, DP, etc) or iced tea. These can be dehydrating which can be hard on your remaining kidney. Creatinine is a muscle break down product so if working out or dehydrated, creatinine will be elevated which makes the eGFR falsely reduced. Also, inflammation is a huge concern so combating it with things like keeping your
Vit D level >44 (inflammation is increased if D less than 44). Also, resistance to disease is lessened if D level is
I watched the chubbyemu video and it linked me here. I am very happy you are doing well now
Hoping for your continued improvement
So happy to see you! Glad your health update is good! Continued prayers ❤
Thank you!
They missed mine and I’d likely be dead if I hadn’t pushed for another one. Damn right I’m upset. They did a scan and still missed it
I totally relate to a lot of what you’ve gone through. As a transgender man (born female transitioned medically and socially to male) I’ve had a lot of similar struggles. Whenever I go to see a medical professional of any kind I have to advocate for myself. I’ve had to do a lot of medical research for myself in order to be able to properly communicate with doctors and get effective medical treatment and care. I’ve also had a few experiences pre and post medical transition where I’ve been treated differently for being transgender. Medical professionals will see my transgender status on my chart and treat me as an experiment almost.
My mother has a complex medical history as well. I’ve watched her have to advocate, research, and be treated differently for her medical history in order to survive. My heart bleeds for her and you as well. I’m so proud of you for persevering and fighting for yourself! It’s amazing to see you share your story and try to help the next person who comes along behind you. You’re an inspiration to many including myself. You keep fighting the good fight and keep up this amazing work!
God bless you sweetheart you are in my prayers
god bless you
Katie you are in my PRAYERS Thank you Lord for bring her though this in Jesus name Amen You Look Great
Damn KC we are all shocked by your history
That IS a big swing in your gfr. Were you taking more motrin during that time after the scopes? I wonder if there was a small acute kidney injury going on. Thankfully it seems like it's bouncing back. One of the guys I care gove for would always lose points on his gfr when he ate high phosphorus foods (nuts, seeds, cheerios etc)... even though his phosphorus numbers were within normal. When he stopped consuming those things regularly and switched to regular milk ans dotched almond milk, he gained points back.
So glad you are still healthy and kicking, girl!
Nope, no medications. It was kind of odd. I actually haven’t taken a prescription or over the counter medication since Nov 2021, after the ablations in my liver.
I clicked in 3.5 seconds of being mentioned by the channel I was just watching. 😳
Can you please inform which medicine did the doctor start for you which helped you shrink your cancer before surgery. Thank you.
It would be helpful if one could get a loved one to see and listen to this or read yout writings.
Hi Katie, could this tumor they found on your kidney be read in some as a Drome Dary Hump enlargement? I have one & I feel something could be missed I get a lot of unexplained abdominal pain & lower back pain. Mine was found on ultrasound the radiologist did suggest other images like MRI but was not done xx thanks hope you are doing well xx God bless you xx Aidan
Hey Katie
Thanks for sharing your story. Now that you’re on the rightside of the scale, Have you changed what you eat? Like no sugar or carbs, and do you do intermittent fasting?
I almost had colon cancer but we found out that I pre cancer tumors in gi track so I ended up removing my colon and I found out I have a genetic disorder that's so rare that it doesn't have a name one of my genes wasn't there that's was a tumor Suppress gene means I can grow tumors anywhere and everywhere around my body
My daughter who is 20 has had very similar to you but keeps getting told it is so many other things. She just married her soldier but I’m really worried about all of this. She is now 10 and a 1/2 hours from me till next year. She has had a cat scan on kidneys and they told her it was swollen from infection and put her on ANTIBIOTICS. Don’t know what to do!
Email address added! ❤
Thank you so much!! I really appreciate it.
your lucky docs normaly bury there fook ups!,give it 5 yrs before tempting fate,good luck x
My RN to remove a rare SDHB RCC at T3a was a walk in the park compared to yours.
How are you now???? God always blesses you🙏🙏🙏🙏🙏
I would be mad if doctors missed my cancer.
jeez that tumor looks bigger than what i think your kidney would be like
Punch out the “It’s just your period” doctor! Yeah my period always caused super-high blood pressure and worse pain monthly! Punch! Punch!
Try autophagy and intermittent fasting
Red state health care. I hope you sued those doctors. Not to scan you because you might find something incidental is just plain malpractice. Good luck.