I was diagnosed with OSA 2 and 1/2 years ago. It is considered very severe. I also have Chronic Hepatitis C and have been diagnosed with several serious personality disorders along with Bipolar and major depression. I'm currently using Cpap and have every night since the Sleep study. The problem is its no longer working as well as it did in the beginning and I am right back to where I was before, except now I have a new array of symptoms which I believe are aggravated by my other illnesses. I'm currently seeking mental health services but without insurance and zero income, I cannot afford new cpap supplies either. I have yet to seek medical attention for my liver and will need to in the near future, as it is inflamed. I can't sleep for more than an hour or 2 at a time I've tried many things I've lost some weight, I have quit smoking, I try to regulate my diet and I don't drink caffeine. I have been out of work since the onset of the severest symptoms of the OSA. I can no longer sleep on my right side nor on my stomach because of my liver. My emotional state is near to catastrophic these last few months. Stress, anxiety, depression and many other factors have left me at a crossroads as to what to do about my finances and my health. I have a problem with admitting to people and my doctors how severe things really are and like a lot of people I don't want to apply for disability but at this point I don't see any choice. Every time I get behind the wheel of a car I put others at risk. I'm a carpenter but I no longer feel safe handling power tools or working in fall protection environments and if I were to be injured I risk the chance of infecting others with The HCV virus. My sleeping patterns are still out of control and since I still owe money to my sleep institute they will not furnish me any new supplies. Due to where I live there are no state funded medical resources either. If I were to tell the truth about my illnesses No employer would hire me and at 43 years old that doesn't leave me many options except to lie if I want to even have a chance at a job. I have lied about my health problems in order to find work for over 20 years with nothing lasting more than 9 months. I tell myself I did what I had to do to for my family, but I can no longer hide my symptoms from people and I'm tired of saying " I'm OK" because I'm not. I'm looking for any advice from anyone who may have similar issues but please refrain from any negative comments, I'm in need of some serious help. If anyone wishes me to elaborate more on anything feel free to ask. I'm looking for advice on the Disability process, obtaining inexpensive cpap supplies, how to talk to doctors, building and maintaining personal medical records ect. ect. anything that might help. I'd like to hear what you would do if you were in my position. -Robert
Robert, About the disability process- go to see your doctor and have him/her write a letter that you are disabled and including the diagnoses and ICD9 numbers. Then go to the social security office and apply for disability.
If you have a local A.W.A.K.E. chaspter they may help you with CPAP supplies, also check ebay (they can only see mask parts, but ususally you get the whole mask), Craigslist, classsifieds, word of mouth.
I would talk to doctors frankly and to the point . Tell them what you told us. Make a detailed list of your various illnesses. Just ask for medical records, sometimes it's more effecient to fill out a release of information form at the doctors office detailing what you want- eg. all medical records, physicians notes and labs for office visit on and give the date.
Have you thought about trying some self titration if you can't see the sleep doc?
I face many of the same problems myself and have been on disability for 5 years and am on medicare, so I least I am able to get medical care.
Is their a Community Services Board whre you live? I know you said they are no state funded resources.
Good luck, Robert. Hopefully you'll get some good advice.
I'm not sure what self titration is... can u please elaborate? And thank you for your advice:) My first step is to get my mental health doctor on board and if he/she feels that my conditions can be managed ( I cannot take medication because my liver will reject it causing the damage to progress quicker than it already is unless closely monitored. I may not even be able to take the HEP C medication because of the danger of complete liver failure.) I plan to recontact my sleep institute and try and cut a deal something along the lines of a monthly payment when I have income or put it to them bluntly my condition has worsened and if they wish to be repaid I'm gonna need their help with my disability claim because I'm not just living with a disabling condition (if I dont get care I'm going to die plain and simple) if they refuse I will continue without their support any way possible my biggest obstacle has been getting the necessarily liver function/biopsy tests required to determine the damage inside my body that cannot be seen. I cannot deal with the sleep institute until my mental health is a bit more manageable ( its quite severe and a misstep on my part could land me back inside an institution against my will. I can not tolerate that again. )I hope to have the doctors concur (as I believe the apnea can be managed as long as I can obtain my supplies and get treatment for my mental issues)Its the liver disease that has me worried the most as the one condition that without treatment will surely result in my death although honestly all 3 have that capability and the cost without insurance or medicaid is astronomical current estimate is around $60,000 to $100,000 for the drugs or $500,000 for a new liver even if i was to find a donor match. The filters in my cpap are 2 and half years old! I was lucky though a good friend brought me a new face mask a few months ago as he had an extra one medicaid recently sent him and since his surgery he hasn't been using cpap. I feel in my current situation I should be considered for temp. disability on the apnea alone and full disability for the mental/liver illnesses that cannot be cured without therapy and will result in my eventual demise.. now if only I can get into the doctors and obtain the records to prove it all.. I may still have a fighting chance.
Ah I read the thread on self titration your talking about managing air pressure correct? I was prescribed the maximum pressure the machine is capable of and I personally feel that I still struggle to breathe even at this level and could possibly use something slightly higher this machine is actually my 4th. I burnt 2 up in the fist few weeks a 3rd I acquired and reset it to my prescription on my current machine but its used in case I need a back up. This last machine appears to be functioning properly. I have no clue if a higher pressure is even possible, or even healthy for me I can't see a lower one doing a better job than it is now but after talking about this perhaps I may need to review this with the sleep people once I can reestablish an agreement with them. I once did a search about machines and there are so many different types and brands its a nightmare to get through it all.
Yeah, Robert, a lower pressure may not work you. Personally I was doing some autotitrating and the machine kept pushing my pressure up and my AHI went up. When I changed back to CPAP at nine I have had my best results. Nine is close to my original prescription, but was not controlling my AHI at home. Turns out my high AHI is due to meds I am on.
I wanted to add an update, I am now currently under doctors care for my mental health and have their support for my disability case. In regards to my sleep apnea I still use it faithfully but continue to have issues with cpap treatment. My Liver has gotten a little worse, and I am now having problems with my kidneys and blood pressure. I plan to see a doctor about this as soon as I can and hopefully get some much needed help with my other medical conditions. I am still waiting on SSA to make their determination on my case. They have sent me to see 2 of their doctors, 1 for mental health, and 1 for a physical. The doctor who conducted my physical seemed very concerned, I did not expect this and hope his report is favorable to my case. I plan to keep building medical documentation about my illnesses with my own doctors. I still have yet to reestablish good communications with my sleep doctors which is my next step.
Sleepybob, thanks for the update. One of the best things I did when applying for social security disability was to hire a lawyer who specialized in that area. This was after I had been turned down once. Your case sounds more serious and it sounds like it may go on through without help, but if you get turned down think about a lawyer. Sorry to hear your health has worsened. Hope things work out getting reestablished with the sleep doc.
Good luck with the disability- sounds like you certainly qualify. By the way they will pay you beginning from the date of your first applicaton. That's how I paid the lawyer.
i think with mental health issues you should be allowed a free advocate to state your case for you and make representations for you