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Medical Financial Resources (Read 15778 times)
cubbie
Experienced Poster
MM.com Benefactor
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Stanford MM Survivor,May
2005

Posts: 168
Delaware, USA, usa, 418, 133, OH, Ohio
Gender: male
Medical Financial Resources
Aug 22nd, 2005 at 12:50pm
 
Hi MM Family.

This my first try of posting links that help people who need health care assistance.Hope It helps!
Not that many out there.but look at your state and county web sites.                                                                              All of these have eligibility guidelines posted on each site.
               
                Hill-Burton Program


http://www.hrsa.gov/hillburton/default.htm


              Department of Veterans Affairs
when you get this link, click on health.
http://www.va.gov.
You have to be a Veteran or spouse and dependants of a Veteran.

         State Children's Health Insurance Program
http://www.cms.hhs.gov/home/schip.asp

I will keep looking!Please add to this.
Kevin
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« Last Edit: Jan 24th, 2007 at 11:49am by cubbie »  

Kevin Allen- I was so much older than,I am younger than that now,The Byrds,My Back Pages
 
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Dewski
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Married.  Son has MM.
 He is 17.

Posts: 70
Syracuse, USA, usa, 479, 86, NY, New_York
Gender: male
Re: Medical Financial Resources
Reply #1 - Aug 22nd, 2005 at 7:13pm
 
Great idea Cubbie!

If any of you are from New York, (but even if you are not, it can't hurt to make a phone call), and you have *ANY* form of Blue Cross/Blue Shield, please look into CompassionNet.  This service is unbelievable.

MISSION : When a child is seriously ill, little else matters. CompassionNet is a program that surrounds children and families with the support they need when they need it. The goals are to (1) minimize the psycho-social, financial and spiritual effects associated with the child's illness, and (2) to help the family cope effectively with the child's illness and treatment. Case managers identify a family's needs and goals that promote improved quality of life. Utilizing a network of people and organizations, CompassionNet coordinates the services that encompass both the physical needs of the child and the needs of the family coping with the illness.


SERVICES : Families are eligible for services if a diagnosis of an illness places the child at significant risk of not reaching adulthood or the child experiences an acute exacerbation of a chronic illness that places him/her at extreme risk. In addition, the child must also be currently enrolled in a BlueCross BlueShield of CNY product and be 21 years of age or younger. There is not cost for the services provided to eligible families. The services offered include:

Coordination among providers
Advocacy
Links to community resources
Emotional support for child, parents, siblings and significant others
Problem solving and assistance for transportation, prescription costs, co-pay costs, child care, respite care, home care and family dynamics.
Access to various therapies such as art and play therapy, or the work of a Child Life Specialist.

REFERRAL : Anyone can call for information at 315-426-5363. Official referrals must be signed by the child's pediatrician, specialist, or nurse practitioner.
____________________________________________

BTW, the web address that I obtained this info from is:

http://www.human-services.org/agencies/c0070compassionnet.html

-= Dewski =-
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Lore
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My brother Kevin (Cubbie)
has Moyamoya

Posts: 819
Delaware, USA, usa, 419, 133, OH, Ohio
Gender: female
Re: Medical Financial Resources
Reply #2 - Aug 24th, 2005 at 1:24pm
 
Hi Kevin (Cubbie) and Dewski,

I found the following link to Financial Resources through the Office of Rare Diseases to include financial aid for medical care and procedures, medical treatments, assistance with paying for medications, assistance with insurance issues and participation in clinical trials. This is located on the Rare Disease Information Center page. It also has a link for families with children with special health care needs.

http://rarediseases.info.nih.gov/html/resources/info_cntr.html

                                                                       
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"What lies behind us and what lies before us are tiny matters compared to what lies within us." - Ralph Waldo Emerson
 
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Dewski
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Married.  Son has MM.
 He is 17.

Posts: 70
Syracuse, USA, usa, 479, 86, NY, New_York
Gender: male
Re: Medical Financial Resources
Reply #3 - Aug 24th, 2005 at 6:42pm
 
Thank you for your post and that URL.  There appears to be quite a bit to read, so it looks like a nite on the Net for me!  LOL

-= Dewski =-
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Islandentity
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My son Robert has MM

Posts: 151
Drummond Island, USA, usa, 387, 60, MI, Michigan
Gender: male
Re: Medical Financial Resources
Reply #4 - Jul 28th, 2006 at 12:56pm
 
OK for anyone living in Michigan

There is hope................
Contact Childrens Special health Care Services
at 1-800-359-3722 here is what they told me they need a letter of dx from Dr. and will make determination on wether treatment will be covered on a case to case basis.....Have your Case worker expedite to director for a 2 day response, Also if you feel there is not enough expertise with in the state they may fund for out of state treatment and evaluation etc. they will cover mileage and meals as well as treatment costs.

Also if your child has special needs, I.E. wheel chair van lifts, ramps, electrical upgrades for home moitioring contact Children with special needs fund at (517)241-7420

I hope it turns out to be as easy as I was told to get approval.........check back under this catergory as I will keep every one poted as to the financial assitance I receive and the hoops I had to jump through to get it


special thanks to Elaine and Kristen  who helped me with wear to go to find what I needed in Michigan

Mike
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BEER Is proof that God Loves us, and wants us to be happy - Benjamin Franklin
 
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Islandentity
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My son Robert has MM

Posts: 151
Drummond Island, USA, usa, 387, 60, MI, Michigan
Gender: male
Re: Medical Financial Resources
Reply #5 - Sep 14th, 2006 at 9:49am
 
Ok, This is what I have found out regarding Michigans Childrens Special Health Care Services........For out of state coverage you will need a referral from your in state specialist. It then goes before a "panel" who approves it. Then the negoitations start with the hospital you have been referred to as to cost. Being out of state the Hospital has the right to refuse the payment amount offered. If you have a Hospital/Surgeon in mind it helps to have that included in the refferal and why that place is being recommended. Other wise the panel will (even with it in they can recommend someplace else) choose where you go.   I have phone numbers to the Govenors office, as well as Michians Childrens Special Health Care Services in Chippewa County and the Directors Office if any one needs it.

Mike
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BEER Is proof that God Loves us, and wants us to be happy - Benjamin Franklin
 
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Islandentity
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My son Robert has MM

Posts: 151
Drummond Island, USA, usa, 387, 60, MI, Michigan
Gender: male
Re: Medical Financial Resources
Reply #6 - Sep 27th, 2006 at 11:18pm
 
Robert is approved for out of state treatment at Stanford. It took about 2 weeks of jumping through hoops, and rattling cages but he is approved, Now Stanford files paperwork to become a Michigan Medicad providor and accepts Michigans scale of Pay and we are set...............Please anyone in michigan that needs help feel free to cantact me................I know what i did to get the approval.

Mike
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BEER Is proof that God Loves us, and wants us to be happy - Benjamin Franklin
 
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Islandentity
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My son Robert has MM

Posts: 151
Drummond Island, USA, usa, 387, 60, MI, Michigan
Gender: male
Re: Medical Financial Resources
Reply #7 - Oct 12th, 2006 at 11:43pm
 
it took a additional 2 weeks and several phone conversations at the beauracratic level but it is my understanding that a contract is in place between Stanford and the state of Michigan. all together it took a month (almost to the day ) from the point of deciding on stanford to having a contract in place.
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BEER Is proof that God Loves us, and wants us to be happy - Benjamin Franklin
 
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rebecca
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My sister, diagnosed with
moyamoya

Posts: 2
Louisville, USA, KY, Kentucky
Gender: female
Re: Medical Financial Resources
Reply #8 - Jan 24th, 2007 at 10:26am
 
I am new to this.  My sister was just diagnosed with MoyaMoya a couple of weeks ago and she does not have health insurance.  She is 40, married and mother of 6 children.  The hospital is going to work with us on the bills, but the surgeon is a different story.  She does not qualify for Medicaid, his office does not take Medicaid anyway. 

Does anyone have any suggestions?  Thanks for any insight you can provide.  We live in Louisville, KY.
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Michele
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I love YaBB 1G - SP1!

Posts: 169
Yankton, USA, SD, South_Dakota
Gender: female
Re: Medical Financial Resources
Reply #9 - Sep 12th, 2008 at 9:47pm
 
I see rebecca posted some time ago.  I am in the same boat.  Not eligible for medicaid/medicare, and have NO health insurance.  Stanford told me to apply for state assistance.  I could not get it explained that South Dakota does not offer assistance just because you dont have health insurance.  If I wanted to quit my job and have a baby at 38 years old, then I would get medical "benefits."  I did send my teasts to Stanford, and they finally called back today (almost 3 weeks later, and had to email several times begging for the second opinion), and confirmed moyamoya and recommend surgery on at least one side and possibly two.  Then they said "if there is anyhing else we can do for you, let us know."  So, I realize many here have been helped by Stanford, but my personal experience has not been a positive one.  I can't even afford my aggrinox at 135 per month.  So, I will stick with my aspirin at a dollar a bottle.  For those of you trying to find resources for a flight, or deductibles...I hope you appreciate the resources you DO have.  Does anyone on here know how much the surgery costs anyway???  My stoke was $38,000 all together.  I can only imagine what the surgery is!!!
Michele
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Mar
Ex Member


Re: Medical Financial Resources
Reply #10 - Sep 17th, 2008 at 12:25am
 
Michele,

I personally find your post offensive and unfair. You say you have no health insurance, yet still; one of the best MM specialists’ in the country takes his invaluable time to review your films at no cost, and give you his expert opinion. Then on top of that, Stanford even asks if there’s anything else they can help you with to let them know, and yet you have the audacity to come onto a support board and talk it down and show absolutely no appreciation for that life saving gesture, that very few other doctors or hospitals do, and act like it’s their fault you have no insurance, when nearly 47 million Americans are in the same boat as you. Then to say it took a whole three weeks to get his opinion… c’mon, get real!  It takes longer than three weeks to even get an appointment with ANY specialist, let alone get their opinion for free in that amount of time. In all fairness, how on God’s green earth could that not have been a positive experience?

Our heart aches for the many patients we see that can’t get the help they deserve, but we all try to work together here and support one another and fight to get some kind of answers, some how some way, but we don’t slam the good people like Stanford who are only trying to help. What more do you want from them?! C'mon, be fair!

I hope and pray you get the help you deserve.

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Shan
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MM Survivor ~ May 27,
2005

Posts: 849
Honolulu, USA, usa, 376, 346, HI, Hawaii
Gender: female
Re: Medical Financial Resources
Reply #11 - Sep 17th, 2008 at 2:46pm
 
Hi Michelle,

Sorry to hear about your situation.  It seems like you have a lot going on right now and things aren't quite going your way.  Undecided  

I understand that sometimes, through the eyes of the government, we make  may too much money to qualify for special services, yet too little to be able to afford some of the things we need in our lives.

I am not familiar with the laws of South Dakota, or what avenues you have seeked to obtain health insurance.  However, I wanted to see if I could be of help to you and tried to do a little research.  Below is some information that I found and could possibly help you in your situation:


1) http://dss.sd.gov/medicaleligibility/familieschildren/lif.asp

2) Get quality Blue Cross and Blue Shield coverage at exclusive Farm Bureau Federation member rates:

Choose from 12 South Dakota plan designs created to fit your personal situation and budget: Individual and Family Coverage or Short-Term Coverage for one to six months  http://www.wellmark.com/ConsumerChannelSelection.htm  -  
 
3)
http://www.hsafinder.com/South-Dakota


4) If you have a serious medical
condition or a disability…
…there are two main programs that may help you. Those programs are Medicare and
Medicaid.


Medicare
You might qualify for Medicare, even if you are under age 65, if you have a disability that is
expected to last at least a year or is expected to cause your death. In order to get Medicare
because you are disabled, you have to apply for Social Security Disability Insurance (SSDI),
and you must receive SSDI for 24 months before you can enroll in Medicare. Until that time,
you will have to fi nd another source of health insurance, like COBRA (see Sections #1 and
#2) or one of the other options discussed below.
TO LEARN MORE about SSDI, call the Social Security Administration’s toll-free number
at 1.800.772.1213 (1.800.325.0778 TTY). To learn more about Medicare, call 1.800.
MEDICARE (633.4227) or go to www.medicare.gov.
Medicaid
If you are blind or have a disability and your income is low or you spend most of your income
on health care, you may qualify for Medicaid. People who have a disability usually qualify
for Medicaid because they get Supplemental Security Income (SSI), but you may be able to
get Medicaid while you are waiting to fi nd out if you are eligible for SSI. Even if you do not
qualify for SSI, you may still be able to get health insurance through Medicaid.
TO LEARN MORE about the rules and how to apply, contact the South Dakota Medicaid
program toll-free line at 1.800.305.3064.
More Help Finding Your Way
Because these programs are so complicated, you may want help. For example, many people
are turned down for Medicare or Medicaid coverage the fi rst time they apply. You may need
to appeal this decision more than once. The following may be able to help:
• You can call East River Legal Services at 1.800.952.3015 to fi nd the legal services offi ce
that is closest to where you live. You can also check www.lsc.gov.
• Protection and Advocacy (P&A) programs provide legal representation and other advocacy
services under all federal and state laws to all people with disabilities. In South Dakota,
contact South Dakota Advocacy Services at 1.800.658.4782 (605.224.8294 TTY) or
visit www.sdadvocacy.com.

5) Your Rights under South Dakota Law
Your state also has laws that control whether an insurance company must offer you a policy,
what conditions must be covered and how high the premiums can be for a policy. Because
these rules are complex, call the South Dakota Division of Insurance at 605.773.3563 to
understand your rights to insurance coverage in the individual market.


6)  If you still can’t find health insurance…
…you may be able to get some help from the following resources: (covertheuninsured.org/stateguides/english/SD.pdf )

Low-Cost Primary Health Care
A local community health clinic may be able to help you get low-cost primary health care.
These clinics offer health services for the entire community on a sliding-scale basis. You can
check for a community health clinic near you at www.bphc.hrsa.gov or by calling the South
Dakota Community Health Care Association at 605.357.1515.

Help with Hospital Bills
If you are uninsured and have to go to the hospital to get care, you may be able to receive
some help paying your hospital bills. Some nonprofi t hospitals are required to provide help
because of their mission and tax status. Some states have laws that require hospitals to provide
care for free or at reduced prices to people who are eligible.

In addition, many hospitals have financial assistance programs. There are also some federal laws that can help you. If you receive a bill, it’s important that you make an effort to pay. Ask to speak with a fi nancial
counselor or a patient advocate at the hospital. You may be able to negotiate a lower bill or a better bill payment plan.  

State Pharmacy Assistance Programs
You may qualify for programs in South Dakota that can help you with drug costs, health care
costs and other expenses. The National Council on Aging’s Web site, www.benefi tscheckup.org,
has a questionnaire that you can fi ll out to learn about a variety of state-based services for
which you might qualify. Although the site focuses on services for those over 65, many of
the programs are available to younger individuals as well.

Other Free or Discounted Prescription Drug Programs
You may be eligible for a free or discounted prescription drug program through the company
that makes the drugs you need. You can get more information about these programs at
www.rxassist.org and www.needymeds.com.


Keep being proactive in your medical care, Michelle.  Again, for whatever reason was that it took 3 weeks to receive your results, for the high cost of your Aggrenox, etc..through all your trials, keep the Faith, stay positive and don't let things that you cannot control get the best of you.  Especially as your body already has it's challenges with dealing with the MM, you don't need any additional stress or negative energy.

I believe your thread above was just you venting...and sharing your frustrations.  We all need to do it and are entitled to our opinions; however, while in the process, we sometimes hurt or offended others, even though no harm may have been intended.   Undecided

I hope you continue to seek our opinions, post your thoughts and questions and know that we are here to support you.  You are going through some tough times...keep the Faith!  ;Grin

Take care,   Smiley
Shan



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« Last Edit: Sep 17th, 2008 at 2:47pm by Shan »  

"Love, Accept And Respect All Things And All Situations In Life … They Are Especially&&Designed For Your Personal Learning" ~Howard Willis
 
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LisaH
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Be thankful in all circumstances

Posts: 261
ArlingtonHts, USA, usa, 358, 120, IL, Illinois
Gender: female
Re: Medical Financial Resources
Reply #12 - Sep 22nd, 2008 at 10:33pm
 
Michele,

I had very similar circumstances when I was diagnosed.  Perhaps this site might help.  I didn't use it as it didn't exist when I was going through all this.

http://www.coverageforall.org/

Best of luck to you.
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"Two roads diverged in a wood, and I--I took the one less traveled by, and that has made all the difference." - Robert Frost
 
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Shan
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MM Survivor ~ May 27,
2005

Posts: 849
Honolulu, USA, usa, 376, 346, HI, Hawaii
Gender: female
Re: Medical Financial Resources
Reply #13 - Sep 23rd, 2008 at 7:52pm
 
Thanks for sharing Lisa!  Good to know this exists!  ;Grin
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"Love, Accept And Respect All Things And All Situations In Life … They Are Especially&&Designed For Your Personal Learning" ~Howard Willis
 
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Michele
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I love YaBB 1G - SP1!

Posts: 169
Yankton, USA, SD, South_Dakota
Gender: female
Re: Medical Financial Resources
Reply #14 - Sep 25th, 2008 at 3:09pm
 
Mar, You are correct that like 47 million other Americans, I do not have health insurance.  If 1 in 2 million people (or more!)  have moyamoya, how many of them are in the very same situation I am.  Like many of you, I was diagnosed and was looking for answers.  I came across this site and was relieved to see that many others had the same diagnois and have been successfully treated.

       "I wasn't pleased to see that there were   others like me, but I felt comforted to know that there are others that have and were experiencing what I was." message board moyamoya.com

I also discovered the Stanford website and became aware of the genetic research they were conducting.  It was my understanding that a person could submit a genetic sample and they would test it to see if your moyamoya is genetic.  I was especially concerned because I have a 1st cousin who most probably also has moyamoya.  I thought for the sake of my family, I should find out if I have a genetic mutation that has caused this.  According to my current Dr. I have moymoya because I smoked for 20 years.  I have not been able to find anything that indicates moyamoya is caused by smoking.  I am aware that smoking increases the risk of stroke.  I then contacted Stanford and requested to participate in the genetic testing.  The following is the email I received:

7-24-08
Dear Michele,
Your email about a recent diagnosis of moyamoya was forwarded to me. We are happy to discuss the research aspect of moyamoya with you, but are also interested in getting help for you with regard to treating your disease. If you would like Dr. Steinberg to review your case, he would be happy to do this free of charge. Have you looked into whether or not you qualify for any state Medicaid programs since you say you are uninsured?

When I got this email, I believed that they (Stanford) would somehow help me get treatment.  It took several weeks for my Dr. to get the CD to me with my MRA's and MRI's.  Once I got the CD, I sent it to Stanford.  When I didn't hear from them, I again emailed.  This was the response.

8-29-08
Hi Michele,

We received your films on CD. You are scheduled to be reviewed at our next case conference. We usually have them on Mondays, but this coming one is Labor Day, so it will be the next one. I'll be in touch as soonas you case has been reviewed.

I again emailed Stanford the Tuesday after they were scheduled to review my CD.  Again, here is the response.

tues.9-9-08
Yes, we did. I will call you today. What is the best number?

I emailed back with telephone numbers that I could be reached at throughout the day.  When they didn't call, I emailed again for the next several days  to let them know what number I could be reached at throughout each day.  I was honestly praying that my diagnosis was WRONG.  I had come across another person on the internet that had been misdiagnosed, and I was praying for the same although I knew the chance of that was slim. I also was curious about what kind of "help" they could offer.  On Friday morning of that week, I sent another email and basically begged for them to call me.  By this time, my family members were calling on a daily basis and we were all on pins and needles.  Late Friday afternoon I got the call.  The left side of my face and my left hand were numb when I got the call, but this happens several times a day, and I know that I just have to keep going until it goes away.  I tried to listen to the information I was hearing, not understanding most of the medical terminology.  But I remember hearing "surgery on one side, possibly 2", "need another test", "Let us know if there is anything more we can do."  I then asked if they could mail those results to my doctor.  I was hoping he could explain them to me.  They said "no we can't, but we can send a letter to you and you can show your Doctor." I then asked about the genetic testing and expressed my concern for my children.  I was told even if it is genetic it might not be traced to my children, but could be a cousin, etc.  I don't remember the exact explanation, as I said, I was in the middle of a TIA when they called.  I have never recieved the letter.  My Dr. has never even suggested surgery and I wasn't even aware of it until I found this site.  Without that letter to back up a suggestion for surgery, I don't know what to do.  But was still hopeful about the genetic testing.
Later that same day I recieved the following email:

9-12-08
I have to emphasize, that the study is not diagnostic and you will receive no results. We are actively researching moyamoya and hope that contributions like yours will lead to answers.

I then explained to my family that we would get no results from the testing.  The overall response from my family was this was a big waste of time and got our hopes up for nothing.  On this site, there have been so many people who were promptly treated.  Thank the good Lord for that. 

"My daughter (21) was diagnosed and had her two surgeries at age 17. After years of migraines, we learned that she had had two small strokes early on in her life. Once we finally had a diagnosis, she was in her first surgery two weeks later." message board moyamoya.com

"Because of what I have learnt here, within less than a month after diagnosis, I will be having surgery, and my life will be saved and my little girl will continue to have the mother she needs and deserves." message board moyamoya.com

BUT.. as I said, what about those of us who don't have those resources?  It isn't anyones fault, and it certainly isn't Stanfords fault that we don't have insurance, and aren't eligible for medicaid or medicare.  I never implied that it was anyone's fault I don't have insurance.  Like Mar said, 47 million Americans don't have insurance and that IS real.  From the sample posts above and many others, some people may get the impression that Stanford is  going to save us all.  If you don't have the resources, the REALITY is, they aren't gonna do much.  At least Rebecca knows her sister isn't the only one in this situation.  According to the ethics posted on this site, that is what we are here for.

2. It is the mission of Moyamoya.com to provide a place of support, aid, and assistance to sufferers, et al after they have found the site and would like to inquire more about treatments and other people’s opinions and experiences.  message board moyamoya.com

I haven't had the chance to read everything on this site, but I have spent alot of time here.  I was fully aware that someone might have a problem with another poster saying anything negative about Stanford.  Apparently I am not the only one who has been concerned about expressing unpopular opinions on this site.

"I am just concerned that if one of your members happens to have a view that differs from yours (or some of the other members), do you consider yourself doing “injustice" by allowing them to express their views/opinions?"  message board moyamoya.com

If I choose to post my personal experience in an effort to make someone else aware they are not alone, and someone else wants to get offended, so be it.  I'm not going to apologize for my experiences or feelings about those experiences.  Unlike many of you, Stanford HAS NOT saved my life, despite what some of you may think.  I have received nothing tangible from them that would even assist in my healthcare. 

To Shan, THANK YOU  THANK YOU THANK YOU!  I do not know how much of your information will help, most of your suggestions I have already looked into.  BUT, you obviously spent alot of time researching options for me
and your post literally brought me to tears.  Thank you for your genuine care and concern for other people.  With the support and encouragment from people like you, we should all continue to seek proper medical treatment whether we have insurance or not!!!  I will also continue to thank God for people like you and Lisa, etc. 
God Blesss You all.
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Michele
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I love YaBB 1G - SP1!

Posts: 169
Yankton, USA, SD, South_Dakota
Gender: female
Re: Medical Financial Resources
Reply #15 - Sep 25th, 2008 at 4:13pm
 
Lisa, you say you were in a similar situation, can I ask what you did?  Did you end up getting the surgery?  How did you get it paid for?  I have been receiving care at the University of Nebraska Medical Center, and they have provided me a financial hardship for the hospital bills.  I also get an 80% discount for the Dr. bills.  This hardship last for 1 year and I only have a few months left of it.  I don't know for sure if I can renew it, but I plan to try.  I was surprised they would do this because I am not even a resident of Nebraska.  This is the sixth Dr. I have been to, only because I keep insisting on a referral to someone who can help. I can't count how many times I have been asked if I am on drugs because of the intermittant numbness, confusion, etc. by doctors!!!!  WHen I had my stroke, the Emergency room Dr. diagnosed me with bells palsey and carpal tunnel.  My primary care physician didnt agree (and I KNEW better) and suggested MS.  He sent me for an MRI thinking he would confirm MS and determined I had a stroke.  Then referred to a nuero.  She couldn't figure it out, but knew I didn't have MS and sent me to UNMC.  My current Dr. (a stroke specialist) hasn't even suggested surgery, and I am not totally confidant that he has much experience with moyamoya (which doctors have!).  The last time I saw him was when he gave me the diagnosis, and as I said in another post, he believes I caused the moyamoys because I smoked for 20 years.  So, I have many questions to ask at my next appointment in October, such as his experience with moyamoya, etc.  At this point I am hoping he will refer me to someone who has experience with the surgery AND who is affiliated with a hospital that has a similar program for financial hardship.  My symptoms are getting worse by the day and I pray I don't have another stroke before I can get some competent medical treatment.  I am considering selling my home, since if I end up in a nursing home or dead, it will get sold anyway.  I know it's not worth enough to pay for the surgery, but I have to consider the reality of not getting the surgery and I don't want to leave a mess for my children after I am gone.  I don't have life insurance either!  Before my diagnosis, I was planning on getting married.  If I did that, I would have health insurance, but this would be a pre-existing condition so they wouldn't cover anything.  I am gonna check into the info Shan provided to see if I can make them pay.  Worth a try! At this point I have not gotten married because I don't want my absolutely awesome boyfriend to be legally responsible for any future medical bills.  It just wouldn't be fair to him.  I also am worried that if I did have insurance that refused to pay, would I be ineligible for some other program that may be aimed at helping the uninsured-such as my hardship at UNMC. So many questions!!!!  And decisions that need to be made, as I said I don't want to leave behind a mess for my family and I am getting worse every day.  Despite have symptoms everyday, I am not considered disabled, so I can't get any help from SSI, medicare, etc.  I make "too much money" for medicaid.  I just have to hope the next stroke doesn't kill me or leave me too messed up that I can't still have some quality of life.  Maybe then I will qualify for some assistance.  I have learned from this site that its not "if" you have another stroke, it's "when." My boyfriend is also a veteran, so I don't know if we got married if the VA would help with anything, or if the pre-existing condition thing would come up again.  Now that I think about it, Sept 27 was the date we had picked for our wedding.    
Thanks Lisa for anything you can share that may help!
God Bless you all.
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LisaH
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Re: Medical Financial Resources
Reply #16 - Sep 26th, 2008 at 12:30am
 
Michele,

I did have my surgeries, the first one without knowing how the heck it was going to get paid for although it did end up ruining my credit.  In the end it did turn out okay as I did get approved for Medicaid with the help of a lawyer.  It was a nightmare and it was enough to drive me nuts.  You get diagnosed with this scary disease, feel like a ticking time bomb, yet the resources are not there to get the help that you so desperately need.

Before I hired a disability lawyer I spoke with my mayor, my congressmen,  my senators or anyone who would listen.  I spoke to newspapers, television news stations etc.   Senator Obama met with me several times, promising to help, but then dumped me to campaign for US senator.  (Don't get me started about that!)  Here is an article I had written at the time (between surgeries).  It's not exactly all correct but it will give you some idea of what went down.

http://sci.rutgers.edu/forum/showthread.php?t=2530

I, like you, was most astounded by the fact that I would probably get help AFTER I was totally disabled from a massive stroke but no help to PREVENT getting to that state.  It still boggles my mind. 

My biggest advice to you is to let people help you with all of this.  In fact, ASK those around you to help you.  You can not allow this red-tape stuff to get you too upset.  I know that you feel like it's all "hurry up and wait" but don't let it drive you insane.  Somehow, someway, and with some help from friends and family, I have faith that this will come together for you.

Feel free to e-mail me to vent at anytime.

Lisa
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"Two roads diverged in a wood, and I--I took the one less traveled by, and that has made all the difference." - Robert Frost
 
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Re: Medical Financial Resources
Reply #17 - Sep 26th, 2008 at 3:08pm
 
I sent a plea for help to NORD and NIH.  Has anyone ever gotten any financial help from these organizations? I also sent a letter to Dr. Frederic Meyer at Mayo in Rochester asking for some help along with a Mayo financial statement form.  I saw his name in one of the posts here and its only about 7 hours from me.  I will keep everyone update.  Thanks for the encouragement and support!! ;Grin
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Re: Medical Financial Resources
Reply #18 - Oct 6th, 2008 at 11:31pm
 
At the encouragement of many on here, I sent an email to STanford asking for the letter...I got an email back that said I would get it via email that same day.  I then got another email saying it was sent o the wrong address and asking to verify my adress.  I did verify the address (the spit cup came without problems??).  To date, I have not gotten the letter.  I did get a response to my request from NORD.  It appears they only provide educational materials.  They will send the materials, haven't gotten them yet either.  The other day I got a headache that made me CRY!!  I am not a weeney, and this was, I can't even say how much worse, than the headache accompanying a stroke.  I KNOW i am getting much worse as the days go by.  I do have an wppointment with my neuro on the 14th...but he is not too helpful.  Praying I get a letter from Stanford before then!  Thanks to all the people who have sent me uplifting emails!  Its nice to know that some people DO understand and are supportive.
God Bless You ALL,
Michele
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Re: Medical Financial Resources
Reply #19 - Oct 26th, 2008 at 8:29pm
 
hello i am 42 and just foubd out i have mm and have hade to fight cancer also had a stroke and to beat it all my husband cant work and have 2 chirlden. Two and he aplied for disibitly and so i cant get the help i need until they Smiley make up their minds but i do have insurance it helps some but not all i have had my first surgery done and have to waite until dec until i can find  out if i get to have the other side done i hope so .
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