US Healthcare, I have Bronchiectasis, MAI, and Liver Disease

In the midst of our great country so many have no medical care. I am afraid to say that I have become one of them. I am saddened by the delay of helping me to get treatment. As some of you know I was diagnosed in Aug 2012. Took me until Dec. 2012 to see a Dr for my Bronchiectasis. It literally took them 3 more months to decide if they were going to treat me for MAC. The same day we were able to get the drug companies to help me pay for my medicine for MAC treatment I found out that I am Jaundice and may have Cirrhosis of the Liver. I use a state ran facility since I have no health benefits. In my case each time they refer me they put my file in front of a board and they determine if they will help me or not. Well they don't send you a denial they just don't acknowledge you and you have to determine that you are not getting treatment. In my case it has been about 3 weeks and when I call they still say they received no referral and my GP still says they sent it. ( you know my problem). I now have dark circles around my eyes, severe joint paint...pain in my stomach and just plain tired like I want to sleep my life away. I am tired of trying to seek help and about ready to give up. I am tired of begging for them to help me. So now it is time for me to try and treat myself. I am still using my Neb 2 times a day..which salt water never runs out. Albuterol until it runs out and my Advair until it runs out. I am not taking any other meds as they do not give me to much of anything. What ever I get has to be free because I can not afford to pay for meds. I have 4 children and I am 49 years old. I probably will never get to see the things I only dream for with my children. I am tired of fighting the system. People can die from just waiting to be noticed and that you are tired of fighting. It is so sad that so many people have no insurance or can not get it. My husband makes to much for state help but yet there are 6 of us and disability always denies you. I am at my ropes end and can not seem to dig myself out.

12 Replies

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  • I am so sorry to read of your difficulties, I think the human race has gone mad, when sick people are not treated to care & compassion, & basic meds are with held due to the cost, it is beyond cruel. We often whinge about the care we receive here & some drugs are refused depending on a persons post code, but it must be a living hell for you, & I know sympathy will not make you well but you have all mine. please keep trying, even if you have to grovel to your mayor, someone there may have a small scrap of humanity left within them. good luck xxx

  • I am so sorry to hear of your current difficulties shirley and wish there was something we could do to help you. Is there no charitable organisation in the US that you can approach for help.? I do hope you manage to find a solution to your problems soon and I send you my very best wishes for a brighter future.

  • It makes me wonder how much medicine is wasted over here. Not anyone specifically but even I think I still have some that I don't use anymore.

  • I just got a phone call from a rep for disability and they accused me of working and not reporting it. HA! I called him a jerk and that he had no clue what he was talking about. Basically called me a liar. I did not work! They just don't want to pay me disability. What can I do? Nothing and they know it!

  • Can your church help you out. I have a friend in the USA living in califonia she is in much the same position as you and I know she has help from her church.

  • Shirley, have you talked with members of any of the numerous US sites? I am not suggesting that you don't come here - it's just that they will know better than we do for issues relating to finances and accessing medical treatment. I know many discuss this sort of thing and exchange tips on where to buy their meds cheaply from etc. so you certainly won't be the only one that is uninsured. There may be all sorts of help out there for you.

  • Have you contacted the American Lung association at lung.org I know they have a feephone helpline similar to ours. Go to the website click on your county on the map or put in your postcode and you will be taken the the area website and freephone number. Good Luck.xx

  • Also try here:

    copd-international.com

    The majority of contributors are American and possess a wealth of knowledge based on experience.

    We should realise from posts like these that despite the problematic nature of our NHS we should be grateful for it!

  • I certainly second that also in Wales we have free prescriptions.

  • get a grip. When will folk grow up!!!

  • Don't really understand your post brook? X x x

  • Brooke12 not sure what you are talking about either. I appreciate everyone's comments and will take up a lot of advice and try to find something to help me out. It makes me wonder how many people who are in my class of income die from no care. I make to much for help but yet have bills and house full of kids and manage to stay broke. But not poverty enough for help. Insurance companies wont write me cause I am ill. And disability does not think I am disabled enough. Really makes me think about how the US needs to re think. I never knew I would be facing it myself

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