At a loss as to what to do next

Posted , 6 users are following.

This discussion has been locked due to a period of inactivity. Start a new discussion

I've tried all of the local places that will help people and they all have wait lists. I'm lost and I have no clue what I should or can do. Other than find a new doctor. Which won't happen fast on a very limited budget and no insurance. I will put my story below. I hope I'm doing this correctly. If not I'm sorry.

0 likes, 32 replies

Report

32 Replies

Next
  • Posted

    My name is Krissi and I am 30 years old. Five years ago I was diagnosed with COPD after getting bronchitis monthly for a year. I was given inhalers but never used them because I didn't feel I needed them. I wasn't short of breath and when I tried them they produced no results.

    About 3 months ago I fell down the stairs and injured my hips. Still hurts to sit or drive. I started losing weight, 20lbs, now I'm down to 85 lbs. I became short of breath all of a sudden and noticed the heart palpitations increased to 40 in one day. I went to er and was told I was breathing and getting oxygen and to find a primary care doctor.

    I obviously found the wrong doctor. First visit for shortness of breath he requested a blood test, told me i didn't have copd that i was to young, and sent me home. I also explained how the back of my skull is caving inward and hurts when touched, so he pushed in and gave me a migraine for almost a week. When results came back I went back and paid to be told I was severely vitamin D deficient. So I started taking vitamin d3 5000iu daily. I asked why I was so short of breath and he stated, Of that is probably just your copd getting worse.

    After I left and realized he had really done nothing I called back and asked for an inhaler for my shortness of breath. I was called a rescue inhaler. I need a maintenance inhaler. I'm sorry of breath anytime I'm doing something. I called back and asked for a maintenance inhaler and a referral to a specialist. He refused saying he doesn't know that I need to see a specialist, and I would have to go back in and see him. I said never mind on the referral.

    After calling for two weeks, they told me they had called one it. I had previously spoken with nurse and doctor about being a cash past patient, no insurance, so they would keep that mind when calling in meds. I was called in an inhaler that costs over $500. The pharmacist giggled and said the Dr knew better than to do that to a cash pay patient, he had choose that one just to be mean.

    That is where I am now. This is my story.

    Report
    • Posted

      Krissi, There are many lung related diseases that can cause your symptoms. I am sailing in the same boat as you are. Its highly unlikley that you have COPD. Have you ever smoked ? If yes how many years ? How many ciggs a day ? Inhalers are expensive if you dont have insurance ? You have to have an insurance if you want to get treated. Seems like you are in US.
      Report
    • Posted

      Hi I agree you are very young to be diagnised with copd.   Has your doctor even done the Alpha1 Deficiency Test?   This is rare but is genetic and should always be done for someone of your age.  .  It's just a simple blood test and I believe you can get it done online?   Not sure there.  x
      Report
    • Posted

      I found a place online that will send you that blood test in the mail. I sent mine back a few days ago. But I have been previously diagnosed by several other doctors with COPD.
      Report
    • Posted

      Yes in US, I've smoked for 16 years. Always been around smoke, biological mother died at 46 from complications of COPD. She was on oxygen for years. I have been diagnosed with COPD many times by many doctors, I think that one was just a bad doctor.
      Report
    • Posted

      A person in their 30's can have copd, unfortunately.  According to a reputable source (in the U.S.) that I just googled and read the average age for diagnosis or "trouble to start" regarding copd is 35 to 40 years old!  Not entirely sure if those statistics are from the U.S. or not, thinking they are.
      Report
    • Posted

      Hi Krissi

      I'm in the States too, and also low income. Because I'm on disability, I get Medicare, but I know a lot about low-income medical care. I hope that you're in a city because it's all much more difficult if you're rural or somewhere with a population of less than 100,000. I also hope you're not stuck with the VA, but if you are, forget the rest of this and contact your congressional rep and your senator, and call the media. Get family my, friends and faith group to start a letter campaign to the rep & congressman.

      Call back to the pharmacy and ask for the manager. Ask them to call your doctor and tell him to prescribe a different generic inhaler. In most States this is completely legal so long as they're not asking for a different type of drug, and the doc can fax in a new scrip. If the doc doesn't comply, rat him out to the insurance company and explain that doc is running up bills for them by requiring all these repeat visits. I hope that this will get you an affordable inhaler to use while you get a new doctor. Use it as directed, sometimes it takes weeks for them to help if they're not rescue inhalers.

      If your insurance is thru an employer, you should be able to change your gp/primary care doc. Call the insurance company, not your jerk of a doc. While you have them on the phone, ask if you need a referral before you can make an appointment with a pulmonologist. Explain that you need to see someone ASAP and remind them of your caved in skull. If that doesn't get instant results, tell them politely that you are recording the call. Make sure to get.the names of everyone with whom you speak. This should produce some results.

      But it might still take a while to see the new doctor. While you are waiting, find out if there is a free clinic in your area. You might have to wait hours to see a doc, but it might be worth the wait, especially if you get free inhalers.

      You can also ask churches for help paying for those inhalers. You don't have to go to a church to ask for help, but you may have to go through a phone lottery for help from Roman catholic churches if you live in a low income parish. Southern Baptists usually have one central office for benevolence; Presbyterians, Episcopalians and Evangelical Lutherans usually don't. As long as they're paying the bill, it doesn't matter what else they say to you.

      Ask all these places about low-income government clinics. If there are some, it will probably take several months to quality and see a doc or nurse practitioner. So keep up with the free.clinic.

      All of this requires a lot of determination and perseverance. Many folks of life :smile tied finances who have lots of health problems find it helpful to have a health advocate. That's really someone to do all this phoning and persuasion on your behalf, because it's exhausting and depressing trying to do all this for yourself. You can ask friends, family, church, find someone who loves doing this stuff. If you're VA, ask volunteers at the USO.

      Report
    • Posted

      Wow.  Excellent information and suggestions for Krissi.  Hope she follows your advice and get's going with it all soon. 
      Report
    • Posted

      Not va, only 30. No insurance at all. Just told I don't qualify for Medicare because I'm not pregnant or disabled. I could use an advocate. My anxiety gets to me on these phone calls and the Dr's being mean. I just really don't know who to call next. All the clinics in my area have a2 year wait list.
      Report
    • Posted

      Read Aitarg's message to you Krissi, he has some excellent suggestions as to what you can do next.  Get on the wait list, even if you have to wait a while.  When they hear your story you might end up being bumped up the wait list.  Do you have a friend or family member that could be an advocate for you?  You have to try and get over your anxiety when speaking to Dr's on the phone or whomever you have to call.  Your health comes first and foremost.  Don't be rude or too demanding but make it clear what you need and are asking them to do for you.  You won't get any help until you  start reaching out to people and making those calls.  Again Krissi, good luck with it all.

       

      Report
    • Posted

      Yikes! 2 yr waitlist is ridiculous but sign up anyway. Sounds to me like you may be like me and are blessed to live in one of the States which refused the Medicaid extension.

      These questions are personal and you don't need to answer them on this site, and please don't be offended.

      Are you able to work? I ask because it sounds like you might not be able to work. If I'm right, you need to call Social Security and begin the application process for disability. We can p.m. about this but I think you have to imitate that since this is your string. There is a lot of strategy involved but the 1st thing is getting that claim started because it preserves the first application date no matter how many times you get turned down.

      If you can't get disability can you get FS and Medicaid? In many states you apply for both together.

      You've got major head trauma. At some point when you've got more breath, find and attend a meeting of your local head trauma sufferers support group. Where I live there are 2 groups which meet simultaneously, one for the sufferers and one for their caregivers. This is agood place to look for someone to help.

      Report
  • Posted

    Hi I am not sure what you are looking for.  A doctor?  A charitable organisation?   Help with costs for your meds?   If you can clarify your post please then we might be able to help you.   I presume you are in USA?   Some of those on here are so they would know the system more than us in the UK.  x

     

    Report
    • Posted

      I am in south Georgia US. I am sorry. I guess I was finally just writing my story down. I don't have a clue what to do next. I'm on a limited income, I've looked for clinical trials, I'm lost. It also doesn't help that I am so exhausted all day without doing anything.
      Report
    • Posted

      Sorry for what  your'e going through Krissi.  I would start looking for a new

      GP right now, but keep the one you have until you find a new doctor.  So, your'e not even sure if you have COPD?  I live in Canada and the health system here is regulated by each province.  Some provinces have better systems than others do.  Our health care system is ranked 30th in the world.  Took me 2 years to find a doctor after moving to a rural area and he doesn't have hospital privileges.  I can't imagine an inhaler costing $500!  That's disgusting.  I'm a lot older than you and have found out through having various health conditions that it's up to me to demand at times the tests, etc. that I need doing.  Also to research each and every medication that is prescribed and to find out anything and everything about the med before taking it or using it, as in the case of an inhaler.  Kind of like a buyer beware situation.  It would seem that a lot of the people on this forum are either in the UK or Australia and their health care systems seem to be far superior to Canada or the US.  Hoping that someone from the US will read your posts and be able to point you in the right direction.  I fee for you Krissi, but it's not the end of the world.  You will find the help that you need, you just have to keep at it.  Good luck.

       

      Report
    • Posted

      Yes I do have it, over 10 doctors have told me I had it. This doctor just looked at me and said no you don't. Then on the next visit when I asked why I'm still short of breath he told me on that is probably your copd effing worse and left the room and tried to schedule an appointment for 6 months later. He never did anything besides tell me to take a vitamin.
      Report
    • Posted

      Start looking for a new doctor RIGHT NOW even if you have to go to a different city to see he or she.  The doctor I finally found isn't in the town where I live, have to drive quite a distance to see him.  Good luck Krissii.
      Report
    • Posted

      Have you ever has a PFT test. It is a breathing test that tells how good your lungs are working. Btw How many ciggs. you used to smoke a day ?
      Report
    • Posted

      Isn't there anyone that can help you out with find a new doctor, etc.?  Friend, family member?  We, or a lot of us, with copd are exhausted just like you are, but you need to keep trying or you won't get the help you need.  Put one foot in front of the other and keep walking.  When you start to realize that there is help out there for you, things will start to get easier.  Don't give up Krissi. 
      Report
    • Posted

      I don't have any friends, I don't get out at all now. My family could but it would end up causing more of a headache because I would end up doing it all anyways. It hurts that they ask if I'm on, I say not really, still on the couch and anytime I do something in our of breath, I er an I love you and bye.
      Report
    • Posted

      I'm not going to give up you on Krissi.  If you have to, stay on the couch, get your phone out and start making calls.  Even if you only make one call a day, that's a start.  Look at Atigar's comments to you and make a list, he had some good ideas and suggestions for you.  Now, don't mean to be rude, get off this site and make a call.  You will feel really good about yourself if you do that.  Love to you too Krissi. NOW DO IT!
      Report
    • Posted

      I wonder without a PFT test how can a doc. diagnose COPD !!! Krissi you have to ask your doc. for PFT. It is very much possible that the reason for your breathlessness is something else not COPD. You may have a heart issue. Dont give up !!!
      Report
    • Posted

      Been on phone with pharmacy on hold on and off for an hour. She said she would call and try to get Dr to change. It's advair inhaler. I was given one of those years ago for free by a doctor. And now it's $585. Crazy. Fingers crossed though.
      Report

Join this discussion or start a new one?

New discussion

Report as inappropriate

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up