My First Youtube Appearance: I Share My Personal Journey

[Cordelia]

My first appearance on Youtube speaking about my personal story/journey!      I spoke at the Gift Of Life Walk in my community yesterday.    I raised just over $1300!!!!           

http://www.youtube.com/watch?v=PpiTsktPaow&feature=share

[Sydnee]

It made me cry. ( I turn 38 next month)
I'm glad you doctors cared about the headache. My mother and her father both died of a brain aneurysm, I also have an aunt that almost died and had 6 repaired. Yet my dr told me it isn't important to have MRIs to check.

I wish they hadn't cut you off not sure how much I didn't get to see.  So is there a way for you to know whether you have dominant or recessive PKD. Not that it makes a difference to you but maybe your kids would benefit or their kids.

It's nice to see that there are people learning about this.   

[Cordelia]

It made me cry. ( I turn 38 next month)
I'm glad you doctors cared about the headache. My mother and her father both died of a brain aneurysm, I also have an aunt that almost died and had 6 repaired. Yet my dr told me it isn't important to have MRIs to check.

I wish they hadn't cut you off not sure how much I didn't get to see.  So is there a way for you to know whether you have dominant or recessive PKD. Not that it makes a difference to you but maybe your kids would benefit or their kids.

It's nice to see that there are people learning about this.   

Hi Syndee!         

I'm so sorry, I have the full version now. I'm not sure what happened, but I think it was cut short when it was uploaded. Anyways, it's all there now. I think almost half was originally cut out of it. 

Here's the link:

http://www.youtube.com/watch?v=PpiTsktPaow&feature=share


I have thought of possibly genetic counselling to find out which gene, but if anything, I'd be more curious to find out for my kids.

I'm so very sorry to hear about your parents and your Aunt.  I'd be seeking another opinion if I were you with regards to checking, since  you have so many family members who have died from that.   Can you ask another doctor and see what he/she says?

Thanks so much for watching my vid and             for all your awesome compliments!            I hope you can watch the rest.         So sorry for any confusion         

[Sydnee]

Lori,
I watched the whole thing. you are so much more positive than I am. Maybe some day I will be too.
In my earlier post I should have written my mother and grandfather (her father) spooky part they both died at 53 years old. I did convince my dr to order the MRI after months of talking.  Seeing a different Dr would require me to go to a different state and travel and additional 1 1/2 hours. So I was glad that I convinced him. Thou he couldn't have chosen a worse time to retire. Ed and I met the new dr went the decided to start Ed on dialysis and admit him to the hospital.
How old are your kids now 12 or 13 and how old is your son?
Sydnee

[Cordelia]

Lori,
I watched the whole thing. you are so much more positive than I am. Maybe some day I will be too.
In my earlier post I should have written my mother and grandfather (her father) spooky part they both died at 53 years old. I did convince my dr to order the MRI after months of talking.  Seeing a different Dr would require me to go to a different state and travel and additional 1 1/2 hours. So I was glad that I convinced him. Thou he couldn't have chosen a worse time to retire. Ed and I met the new dr went the decided to start Ed on dialysis and admit him to the hospital.
How old are your kids now 12 or 13 and how old is your son?
Sydnee

             Sydnee.  Thanks for your sweet words!  I always figure there are people worse off than me.  I'm pretty lucky, I have no other health issues, well, other than Arthur! LOL
But, I don't have diabetes and I don't have cancer. I'm very lucky, and thankful.

I'm so glad you convinced your doctor!! Wow, I can't imagine driving all that distance. The longest I ever had to drive for treatment was about 40 mins. Now, my hospital is right behind my house---you can't get any closer than that!!

My twin daughters are 13 and my son is 11.

I'm so glad you were able to watch the whole video. Not sure what happened why it didn't all upload the first time.

[mcclane]

You touched on many issues I dealt with :

- getting used to a 'new' you.  Before any dialysis you can do what you want, whenever you want, on dialysis your life is scheduled around dialysis.
- fairness.  I don't drink, smoke, (not going to go as far as eating right  ), so I thought it was unfair that dialysis was part of my life as well.
- renal diet, that took some getting used to, after indulging on items like big macs, kfc, switching to something that is low sodium and watching phosphorous was a real change.

Wow, 2 hours to death, that is way too close to comfort.  I'm glad that you're up and walking now, and prey that Oct. will bring good news. 

[MooseMom]

Very, very poignant.  Made me cry, too.   Thank you for sharing this with the world.  It's important.

[Cordelia]

You touched on many issues I dealt with :

- getting used to a 'new' you.  Before any dialysis you can do what you want, whenever you want, on dialysis your life is scheduled around dialysis.
- fairness.  I don't drink, smoke, (not going to go as far as eating right  ), so I thought it was unfair that dialysis was part of my life as well.
- renal diet, that took some getting used to, after indulging on items like big macs, kfc, switching to something that is low sodium and watching phosphorous was a real change.

Wow, 2 hours to death, that is way too close to comfort.  I'm glad that you're up and walking now, and prey that Oct. will bring good news. 

                  Mcclane

You are so right             . Before, never having to give second thought with what I was eating, having to change, everything!  I hear you !!         Having to get used to it, took time! 

Thanks for your best wishes for next month.               Fingers and toes crossed that they will find a match for me!         

[Cordelia]

Very, very poignant.  Made me cry, too.   Thank you for sharing this with the world.  It's important.

                MM

Thank you so very much for your compliments!                  

I will keep on speaking, I'm finding I really enjoy it!         Thanks so very much for watching and posting your thoughts