All Journal Entries Journals
Previous | Next

frustration

Feb 20, 2012 - 5 comments
Tags:

endstage

,

healthcare



I am just so tired of fighting for healthcare I am entitled too. I have been sinking into depression because I feel invisible and unless you have these conditions people really have no clue as what you go through.

Comments
Post a Comment
1420486 tn?1384793153
by blondie717, Feb 21, 2012
WOW, Molly.  Hey your my neighbor! ;-)  Hey cheer up and remember where there is a will there is a way.  I went into a Clinical trial out in Tulsa.  Had Blue Cross/Blue Shield @ the time (excellent health insurance) But I figured hubby would yank it or  the company he was injured @ would, since he was suing them.  Guess what. around 11 wks into treatment, I learned my insurance kicked da bucket.. Anyways I treated with a experiemental drug that offered the then S.O.C. (thats riba and interferion.
  So like your my neighbor. Have you tried Sooner Care?  There are other's too. But I need to read your profile. And learn more like Geno type, stage and grade, prior tx-er and what have you.  
  Why hell Im out here in Calif (visiting) and its been about 6 months and I needed to test to see if I have had a relapse or a viral break-through or some such ****...Hell now I have free health Ins. out here in freeking Calif.  I just had labs done that cost between 300-800 bucks (or so I think) and it only cost me 5 bucks for labs and 20 for the doc. Heck w/blue cross/bl shield it would of cost a 35 dollar co-pay+++..
  See Molly just hang in there cheer up. Were with ya.  I will get back to you...Oh and ya can always look into www.clinicaltrials.gov  
Ginger  (your neighbor) Oh and Indian blood/card garantees you tx

2038871 tn?1329798210
by mollybaby, Feb 21, 2012
Thanks blondie for the support and i do have medicade and will have my medicare in August. I had to come back to Okla Sept of 2010 I could go no further with the healthcare system with no money. they finally awarded me my social security on a medical retirement. this took 3 yrs of fighting for and finally once I was diagnosed endstage they gave it to me and I have worked all my life and I guess they think oh she wont live long enough to keep drawing her social security so give it to her...LOL! Biopsy done in 08. went thru 9 months of the grueling interferon treatment and the virus re appeared last year and my GI Dr wont put me back thru the treatment because I had all the sides affects and even lost my hair. So now Im wondering why they have not referred me to a hepatologist and wont stop asking questions until Im satisfied.I have to request my own labs to be done and why they arent doing thier jobs is beyond me.....argh! Thanks for the support and will keep in touch . Im still learning to navigate the site so forgive me if I dont answer right away. Good luck and God speed! - your neighbor - Linda

1420486 tn?1384793153
by blondie717, Feb 21, 2012
Hi Linda, so I called Choctaw Nation in Talihina (Now I know you have medicade aka sooner care I think) medicare is much better, my friend gets the part A,B and D so he gets full coverage. Back to Choctaw Nation. They said they do refer people out to Hepatologist's.  Looks like your going to have to give em hell and tell em you want a specialty doctor. And then tell them you want to get on the transplant list.. Yea navigating the site is not easy. I chased ya all over Internet looking @ threds. Sorry you had such a hard time last time. They may not treat you if your decompensated . But gee I would they would give you suggestions and referals with out you having to pull their teeth.  There are people here whom have been in your shoes, and had T.P's or are waiting for transplants.  Orphaned hawk, HectorSF, Mikesimon,  .  Are you doing the special diets (no salt etc)?  Do you have Cherokee Card or Choctaw chickopee (spelling) Card?
Ginger

317787 tn?1473358451
by Dee1956, Apr 12, 2012
Hi Linda, I just saw your post, I am really sorry for what you are going through.  It is horrible to have to advocate for yourself when you are sick.  Please keep in touch
Dee

2102223 tn?1389369486
by ninezero8, Apr 14, 2012
Well....I have satisfied every requirement....have seen every specialist under the sun before starting treatment and the good news is that I'm as healthy as can be except for the Hep C. I feel very fortunate for that, but now I'm in the final count down. If the meds arrive next week it looks like Thursday will be the start of it all and hopefully the beginning to an end for the virus. I left a voice mail with my psychologist yesterday who I have only met with twice. I wanted to discuss having some prescriptions on hand at the start and the possibility raising the dosage of Welbutrin because I have taken it for several years. Guess what....no response. That really concerns me because these people are not in their office on the weekend so if I begin Thursday and call Friday in a panic to get a prescription for something that I really need, I may just leave another voice mail and end up suffering through the weekend for no reason. Monday I am emailing my doc's assistant that I correspond with most frequently to explain and see if there is a back up plan or some way to get what I need when I need it. I'll tell you....having just lost my Mother and having my Dad currently in the hospital has helped me to lose a lot of faith in the medical field of which I never had an abundance of confidence in anyway. When I begin this triple therapy next week I do not want to feel like I am invisible and will not be addressed when I really need help. I understand that these people are only human too, but they are professionals and when people need things from me on my job I am Johnie on the spot and at least respond even if I don't have an answer or the answer they want to hear. I just really hope that I do not get swept under the rug and have to wait for a simple response. Just airing my views and venting a bit. I know most of you have it much worse right now, but going into it, as you know, is as difficult as the rest in most respects.

Post a Comment