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.
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.
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.
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
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
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.
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.
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.
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.
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.
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.
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.
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 :
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.
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 ?
20-30 cigs a day. Going to quit soon. No I haven't had pft test.
Oops, that should read "Many folks of limited finances"
Wow. Excellent information and suggestions for Krissi. Hope she follows your advice and get's going with it all soon.
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.
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.
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.