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Ok so tonight i experience serious pain my stomach was so tight and so red i could not hardly move , and then i started feeling like something was tearing inside like the mesh was being ripped away from my insides where ever it was placed and i think the remodulin is reacting to it in a terrible way but the ripping was just so much pain i almost passed out

June 22, 2023
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A myPHteam Member

Once you have had a hernia you know exactly what that feeling and it is really scary to me that they want me to just continue on using the meds and go and ask my family doctor who knows literally nothing about my meds and such

June 22, 2023
A myPHteam Member

Carmie, Wow! Canada sounds like an awesome place to have lived💜 I hope you find the care you need and deserve considering the lack of specialist. Prayers for your path ahead ❤️

June 27, 2023
A myPHteam Member

Mello7020 I have a specialist here and unfortunatley for us live in british colombia canada , we only have 1 single specialist who deals with the entire province seems odd i know because trust me i have looked but there is only one and there is 1 in alberta and then 1 someplace else i think in total of all of canada there are 5 ph doctors

June 25, 2023
A myPHteam Member

Carmie I feel your pain, this would be unbelievable if I hadn't gone through the exact same thing. They left me to die with a pic line and no instruction.. blamed it all on anxiety when i was on my death bed. they told me that I didn't fit the "criteria" for treatment, or a transplant. if I didn't have friends and family, "a support team" then their hands were tied, ect. None of them people matter, you need to go to a specialist. It took me going through hell and back to get with a specialist, and now I have an amazing doctor. If you live in my area, Largo Tampa area in Florida, I would be glad to refer you and tell you what I can. Best of luck, I'm sorry you had to go through it. God bless

And NEVER EVER go to Jacksonville. They will kill you.

June 24, 2023
A myPHteam Member

I called my Nurse practioner , and they are still trying to tell me to leave the site in, but what i don't understand is why they are continuing tk do this crud to me ,it never ends and i do not have the luxury of having more doctors to get a second opinion from it is either i do this medicine or my doctor was just going to refer me to end of life care at 52 years old with 5 children and 5 grandchildren he would let me just die, like is my life not worth anything to this doctor or has be so descentzitized , my heart is feeling like i just don't have the will to fight and when did ths decisions about my life not become mine, i am conscious and understanding , intelligent and articulate ,why does he choose to act like i am not worth his time , i am a hard working , loving caring individual that rnay he also told me having a set of lungs is a priveledge not a right and quite frankly he did not think i was priveledged enough to put me forward for the transplant list to get a donor ,it just makes me feel powerless.

June 23, 2023

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Bakersfield, CA