Question
disability/ assistance/ HELP?
am a 22 yr old Female, married, 1 child who is 2. I was in pursuit of becoming a RN registered nurse. I have a few health problems, but FINALLY got accepted and now have health insurance. Because of my having health insurance, I got testing done on a few physical issues that were concerning me. I was diagnosed about 1 month ago with pulmonary hypertension by an echocardiogram, heart clots, and holes are ruled out as being a cause(with a transesophageal echocardiogram) and I am now seeing a Pulmonary Hypertension specialist, who did a right heart catheterization on me 2 days ago (which is considered the golden standard of pulmonary hypertension diagnosis,and gives a direct measurement of the actual hypertension range, instead of an estimate like the echocardiogram, and the Transesophageal echocardiogram. My diastolic measurement was 83, which in a healthy persons pulmonary artery should be about 20. I know that my heart on the right side is enlarged due to the pressure build up, I know that it is pushing on that side of my lung, and I know that my prognosis is 10 years OPTIMAL --unless there is a breakthrough in medicine for this rare disease that affects 1 : 1 million people. And for me the cause is unknown which makes my diagnosis, Idiopathic Pulmonary Arterial Hypertension. However, during the right heart catherization I fell into the category of the few with this disease that have a good response to the medication. So because of that my prognosis could be better if I take the medications , and do all I can to improve my condition. The problem is, The medications I need to take to improve this are warfarin(a blood thinner)-very cheap, Viagra(yes,it was originally created for hypertension), but because folks have difficulty getting errections and I need this to LIVE, insurance won't cover it, and I have to pay $96 for an 8 day supply. I also need to take a medication which I have not yet been prescribed, which will cost between 85-125 THOUSAND dollars a year, depending on the brand, and I know my Insurance company is trying to find reasons to change this... So does anyone know what I should do, or what I am entitled to? the only option I see is going on disability. Other than the money, I have horrible symptoms of fatigue, because oxygen isnt being pumped adequately to the rest of my body, which often causes me to faint as as result of not enough oxygen to my brain, which can be brought on by taking 4 steps, or simply standing up. it causes TONS of other symptoms, not to mention my other health problems prior to this diagnosis. I just dont know what to do because I have to take my meds to live, but can't afford them, and there's no way i can work right now due to my physical and mental status, even if I did work, who has over 100 thousand dollars to spend on 1 type of medicine??? If my time is limited I need to use every ounce of energy and muster up any happiness left to shed on my 2 year old and the rest of my family who are hurting. I have seen people cry (like my dad), who I have never seen cry not ONE other time in MY ENTIRE LIFE!!! I stay up at night wondering if my daughter will even remember me, and if so, hoping that I am not remembered subconsciously as a sick, weak, depressed mother who ...blah... I also don't know if I were to recieve it if it would be based on shitty part time jobs I had while I was in school, working to be something and working to save peoples lives, making the deans list Every quarter, and aspiring to prevent people from having to deal with health care workers that I have. Although they say there is no known cause, it is only because they can't prove that my problem is due to thyroid disease. My normal TSH(thyroid stimulating hormone) should be 5 at the highest, bloodwork was done, and 2 years later I was retested by my current physician. whoever did it the first time overlooked that my TSH was 394 instead of 5 .. A SIGNIFICANT difference, which is why I have hashimotos thyroiditis, also known simply as hypothyroidism, or a leukocyte deficiency, which is known as an auto immune disease. Auto immune diseases however have been linked to PAH as as well as simply put,,, Thyroid diseases this was uncontrolled for so long and go to such a crazy range that it could be why I am where I am now. I am stuck in all of this, and my husband is stuck having to look after me and our daughter because I can't walk 5 feet without fainting for about 3 minutes, and 4minutes and higher can cause irreversible brain damage...I'm just sooo overwhelmed, and young, and I don't know what order, or what steps for that matter to take?? If anyone could help I would really apppreciate this.
8 months ago - 4 answers
Best Answer
Chosen by Asker
I am so sorry to hear what is going on, I have been following your situation, and I can't fathom how you are able to deal with it. Here are my suggestions. You have extremely serious problems that require you to have optimum mental as well as physical health. You have made a valiant effort to pull your weight and not become part of a social program, but there is no shame in needing it when you are suffering and dealing with the hand you have been dealt. These programs are for the exact reason of what you are dealing with. First speak with your doctor. If a medication which is considered "not medically necessary" as "Viagra" is, may well be covered if the doctor justifies why you need it. Many of them are, and once it is clarified then they will cover them. If this is not the case, and for the other horrendously expensive drugs you are needing, talk to your pharmacist. They will help you apply for discounts through the drug companies for financial help when it is so important for you to have the medication. Apply immediately for SDI. Then call Social Security and apply for SSDI. You definitely have the medical records proving you are not able to hold down a job. There is no shame in any of these, you paid into the system the entire time you worked, and would you not want anyone else you read about suffering from problems like yours, not receiving the benefits our tax dollars go to. I don't think you would begrudge another person, so why would you not do so yourself. If you have problems with Social Security, (you may just because of your young age), then get an attorney specializing in Social Security. They work on contingency, however because your case probably will not have much back pay, you may need to find one who will handle yours pro bono. S.S. administration or your county's health department should be able to help you locate one. This will give you the rest and chance you need to take care of yourself, and your family. The added stress you are under is just making everything a hundred times worse. Modern medicine is giving us miracles everyday, and I sincerely hope you are another one. The first step is getting the medication and financial help you need to deal with these things. Please remember, you paid your taxes and so does your husband. Use the programs you need to use to get well. Best of luck with everything, and please take care of yourself!~~
by debijs
8 months ago
Asker's Rating: 
Other Answers
Check the web site of the company (or companies) that make the medications you need - some offer special prices or even free medicines for patients with hardships such as yours. For example, Pfizer, the makers of Viagra, has such a program. Pfizer U.S. Patient Assistance Programs One step in helping people live longer, healthier lives is giving them access to the medicines they need to take control of their health. That is why, for more than 20 years, Pfizer has been making our medicines available to those in need through our patient assistance programs. Today, we offer prescription assistance through Pfizer Helpful Answers® — our family of programs to help people without prescription coverage save on many Pfizer medicines, no matter their age or income. People with limited income may even qualify to get their medicines for free. In the past 5 years alone, Pfizer Helpful Answers has helped over 5 million patients receive nearly 50 million Pfizer prescriptions for free or at a savings. Visit Pfizer Helpful Answers to learn more about this program and to find patient assistance programs that may best meet your needs. www ...
by PiggiePants- 8 months ago
Try summarizing your question in three sentences or less to get more help in this format. Otherwise, you're just venting. edit: Sad really. I even checked back. I'm sure there are folks on here who could help but didn't want to waste their time reading the whole darn thing to find out maybe they couldn't.
by aaron p- 8 months ago
my husband is a lawyer whose practice is majority of social security disability and SSI. 1st off, let me clairify the difference between social security and SSI lawyers and "accident lawyers". accident or injury lawyers make 1/3 for any settlement you get. if nothing they get nothing. but in social security and SSI, here is the beauty of the system. they get a certain amount paid to them by social security if they win. if lose, they get nothing like accident lawyers. but;;;;;;;;if they win, it does not come from the client, they get their benefit and social security pays lawyer seperately, so the client loses nothing. now here are some facts. you can apply yourself, but in most cases all claims are denied automatically, regardless of condition, age etc. most clients who come to see my husband have been denied at least 2 times. a good social security/disability lawyer can review your case and see if you make the "listings". there is a book that is specific which qualifies you to be disabled. the lawyer can also try and get your doctors to provide the medical records/reports needed to help you be successful. here is the bad news; the average time from filing a claim to being heard is around 2 years;;;;;;;;;;;there is a huge backlog, and you just become the next number. also is your age. a lot of disability claims are denied regardless just because you are so young. the normal thinking is that anyone over age 55 is given more consideration on being awarded disability since they have allready paid into the system for maybe 30 years or more, vs in your case maybe 3 to 5 years, so you will be paid much more than you could have paid up to this date. you can try and go to the drug manufacturers to see if you qualify for free or subsidized assistance on your drugs, but in many cases, you have to be below the poverty level to qualify. you can also go to some canadian website pharmacies and see if their drugs are cheaper, but even if they are, your insurance company may not cover since not in the US. also; talk to your doctor and see if they will write a letter stating that your RX is medically necessary and that others wont work, or that this drug is not experimental. my husband had a RX that they rejected. he received a letter from the insurance company who suggested another drug; his doctor wrote a "scathing" letter to the company highlighting the fact he was a doctor and they weren't and they had no knowledge of what they were talking about or education to back it up. they then finally approved the drug. also; one last consideration; check to see if in any way you can get medicade; but then again, you have to be in the poverty level to qualify. with medicade, your drugs would be paid most likely. this is the reason we need healthcare for everyone in the US. if you lived in canada, UK or elsewhere, this would not be a problem and you could get help.
by lucy- 8 months ago