Hemochromatosis: My Confession (Year 4)

[@DoodleMoochie]

Thank you for posting this! Thank you for reminding us that it is okay (and really mandatory) to allow ourselves some grace.

[@KyleClaytonGore]

Thank you for saying that! It’s so true!!

[@Hhh-ib3kb]

I'm so proud of you Kyle Clayton Gore!!!!!!!!!!

[@KyleClaytonGore]

Thank you so very much!!

[@csdesjarlais9779]

Also, glad to find somebody else with hemochromatosis. Thank you for the video.

[@KyleClaytonGore]

Thank you! I’m here for you!

[@pamelag5945]

Good for you, Kyle. Glad to see you being gentle with yourself. (It’s kinda odd that two days ago I was thinking of you and wondering how your H-Journey and health were!😳🙏🏼) 💜

[@KyleClaytonGore]

Thank you Pam! I appreciate that! ❤️ Wow! That’s is odd but I love it. I was debating posting this but just decided to do it last night. 💕

[@ayahshope]

Kyle love you have to. I know you’re burnt out, been there but it’s so important. The weekly phlebotomies were extreme for sure. Please, go do your labs. That’s all, start there, you got this. ❤️ xoxo

[@KyleClaytonGore]

Thank you for your encouragement. You are right! My therapist is also helping me get there. I appreciate your kind support. ❤️ xoxo

[@ayahshope]

@@KyleClaytonGore They really pushed you hard. You pushed yourself hard. It’s enough to give you medical PTSD. I don’t know if it’s a thing but it is for me! I confess, I’m not the best patient these days but I am 60 yrs old. I watch my numbers. You being so young have little room to be a bad patient because you have so much life yet to live. Places to go, people to love. We gotta baby our livers for the long haul. If you ever want to chat with a crazy lady hemochromatosis survivor, dm me on Twitter @ayahshope. I’m here for you in any capacity I can

[@KyleClaytonGore]

Thank you so much! You are probably right about the PTSD. I’m going to be a better patient and I’m about to start back up again, taking it easy. Thank you so much for the offer, I’ll definitely reach out! I appreciate your kind words and support!

[@RoyaltyAC]

I’m don’t have hemochromatosis, I just like listening to you talk. It’s really relaxing. I’m actually anemic so I do kind of relate to the toll it takes mentally. Having to focus so much on my numbers and trying to get them in the normal range and even dealing with having to be constantly stuck with needles. Best of luck to you! 🙏🏾

[@KyleClaytonGore]

Oh wow! Thank you for saying that. Yeah, you’re the opposite of me. Same frustrations. Still so hard to deal with sometimes. Hang in there and thanks for watching!

[@elvisedimo5694]

Hello,Point Number one,phlebotomy is not the only was to your numbers down. Your. Nutrition can help,coffee ,cabbage yoghurt, cheese Lactoferrin Colostrum,Vegetables etc. Supplements like Vitamin B Complex, Magnesium helps too. See also IP6 etc Second point. You guys like seeing Therapist for almost everything under the earth. I just wonder. Third Point You do not need make Confession. We appreciate the love to set up this channel to educate us of this condition. That in itself is a sacrifice worth appreciating. And I know people here do appreciate your contributions. Finally, waiting over one year makes me worry over your health. We do not want anything wrong with you. So pls get back to your duties for humanity. Stay safe. Stay blessed.Stay healthy!

[@ICESTAR771]

Pretty sure I'm near my 10th now have not really been counting them what helps me is talking to nurse and not being awkward you know dunno what it's like there but nurse stays with you until its done. Also my level been going down but recently been going back up I go every 2 weeks so annoying when it goes up I'm still trying to understand what to eat and what not

[@shawn57187]

I had a similar story, but it’s been about 3 years since I went back. I moved to a different city and never got setup with a new specialist 😬

[@KyleClaytonGore]

I need to get set up again too. Hopefully we can get back on track sooner rather than later.

[@jonwallace4216]

I was diagnosed with hemochromatosis almost 5 years ago. My ferretin was over 1300, but the worst news was that my liver had been damaged to the extent that it would eventually fail. my gastroenterologist referred me to the hepatology department at Ohio State University. In the last six months my liver had, as they predicted, begun to fall behind in its job to keep me alive. The final straw was discovery of a malignant tumor in my liver. My story has a happy ending. Two weeks ago I received a liver transplant, and I am on the mend with a healthy, perfectly functioning liver. My advice is to keep being monitored by a good hepatologist, and don’t ignore symptoms. Had I been more proactive in reporting my chronic fatigue, belly pain, and general ill feeling , I might have been able to save my liver. But by the grace of God I was lucky to get a matching organ quickly.

[@toneman8478]

I know how you feel.. Been doing phlebotomies for 6 months straight now

[@KyleClaytonGore]

Hang in there!

[@cryptokid3659]

God bless

[@chrisjoe145]

Hi Kyle, did you also experience forms of dizziness, weakness, heart palpitations, shortness of breath and random sweating during the hemochromatosis period?

[@KyleClaytonGore]

Hello! I would say I felt weak but that was about it. Hope you are doing well!

[@Liberty_Tree]

Keep going with it, you'll kick yourself if you develop problems for not keeping up with it. I'll tell ya, you've already conquered your fear. Three years of weekly blood letting, you've conquered it!

[@KyleClaytonGore]

You’re absolutely right. I am about to start back up again and get it down before anything happens.

[@Liberty_Tree]

@@KyleClaytonGore It's a difficult go, and it's hard to always be strong. But you're a hell of a lot tougher than you think.

[@KyleClaytonGore]

Thank you for saying that. I appreciate it.

[@michaelreeves3647]

I’m curious - over the course of the year without phlebotomies, did you notice an increase in fatigue, concentration, arthritis? I was just diagnosed and starting weekly phlebotomies. Thanks for sharing these updates.

[@KyleClaytonGore]

I haven’t noticed fatigue or concentration, my hands have felt it though. Keep up with your phlebotomies, let me know how it goes!

[@suzannehedderly1331]

Did you ever go back? Hope you are well!

[@KyleClaytonGore]

I’m finally going back next month. Can’t wait any longer.

[@suzannehedderly1331]

@@KyleClaytonGore Good for you!

[@lander10580]

Sorry that its hard mentally for you with the fear of needle. I dont like it ether but I like when my Numbers are Way down and the joint prins subsides a bit. I Think its normal to wanna escape from it , its not just getting blood drawn its also What we eat and what we drink and it kind a makes us differnt from everybody Else. Hopefully in the close future we Will be abel to take a pill instead with hepcidin but for thouse and Maybe you some stomach acid pills Can be a great help as they cancel out iron, maby talk to your doctor about that :) Wish you good luck with the treaments my next one is in 2 weeks and Then again 3 months later.

[@csdesjarlais9779]

Hard with our terrible health care. I wish I could just go to a blood donation place instead of having to go through the medical system.

[@KyleClaytonGore]

Me too!!

[@BridgetMWillard]

Oh friend.

[@KyleClaytonGore]

Thank you for always checking in on me! I am grateful for your friendship.

[@BridgetMWillard]

@@KyleClaytonGore same!