Mesh Removal & No Money

There are so many days when I want to scream at the world “Why are women being injured and no one cares enough to hear our pleas”.  Remember when doctors ignored those who said “I feel ill and cannot get out of bed.  My pain is all over”.  But they were ignored because nothing revealed the cause.  It took years before they gave it a name and it was called Fibromyalgia.  We have serious issues that cause major pain, infections and crippling nerve injuries and they do show up and still no one speaks out and says “YES IT IS THE MESH CAUSING IT”.  Why?  Because to do so means they have to admit that to thousands or perhaps hundreds of thousands of people around the world who are hurting from mesh, means that they have to own responsibility.  They have to stop using it and help those who are injured by it.  Instead they would rather ignore us and continue daily to add more casualties to the list.  THEY DON’T CARE ABOUT US.  All they care about is the amount of money this admittance will cost them and the fact that they continue to make more.

The only place you can get recognition that mesh is doing this to you is the Urologists at UCLA.  Three people.  Dr. Raz and two women surgeons Dr. Kim and Dr. Rodriguez.  Look to the right side and you will see a link for doctors at UCLA.  If you have insurance or Medicare, go out there and get help.  I know for many the first thing you will say is “I don’t have the money to fly and pay the hotel expenses”.  So what can you do to help gather it together.

First please understand that this is one time you have to put yourself first.  Whatever funds you or others raise, it cannot be for the rest of the family.  It must be to use towards getting help for YOU!

Because of all the women suffering I keep researching to see what they can do to help themselves.  I want a national fund set up by the mesh manufacturers and whoever else profits by what has happened to women.  But….. So far it is only a dream.  In the meantime women are dropping like flies with no recourse but to live in bed injured.  No job.  Their family income slashed to the core and they still have to make sure there is a roof over their heads.  Food in the pantry.  Gas for their spouse or partner to get to work.  How can they do it and live like this?

First, please try setting up a fund raiser here.  It may not work, or it just may.  You can use this blog link to prove what is happening to women across the world.  To prove your case.  I will verify this if anyone asks.  They can email me at the address you can see at the top right hand corner.  Set the goal at a reasonable amount.  Think about how much it will cost for two flights for consult and surgery allowing it for two people.  You have to take someone with you.  There will be a hotel and other costs.  Look to the right and a blog will give you a rough idea of what those costs will be in ‘tips for traveling to UCLA’.  Add extra for food.  Then put it all together and see if it is possible to raise enough.

This is the link.  www.youcaring.com  My fund raiser, Bev, told me over the phone a few days ago that there are sites set up where you can raise money for medical expenses.  She was about to undergo removal surgery and I am still waiting to see how she is doing, so without a link, I began exploring Google.  There are several but be aware that some charge fees.  This one does not.  However, you need a PayPal account set up in your name and there will be fees taken out of it.  You can go to their site and find out how much.  Then you can add it to your goal amount.  If you do not know how to set things up, ask a friend who does.  Ask anyone to help you and you will be rewarded.  These sites work from whatever country you live in.  Always remember, if someone wants your bank account number, it is a no no.  They can mail a check, but never do anything in your account with others.  Don’t just trust.  We’ve done enough of that and where has that got us.  Trust no one without you know who they are and what are their motives.

Hotel fees.  Now what.  Most of us stay at the Tiverton House Hotel which is in the heart of UCLA and walking distance to the urology office.  Surgery is done in the same building on the top floor.  If you are living on a fixed income such as I am or your cost of living is high because you have several children to support, you can receive a discount on your room.  There is a form you can download here  http://tivertonhouse.ucla.edu/body.cfm?id=32  It can make a huge difference in the cost of your trip and if you read about this hotel it receives donations to help women like us.

Update
A small savings in money, but one lady recently sent me this email.  Normally it costs $16 per person one way, $64 for two round trip, so the savings will cover the tip.

“I just wanted to let you know for others who might need the info that Supershuttle.com you can make reservations online to go from LAX to Tiverton house or you can call them at 1-800-258-3826 and they are very nice to deal with on the phone if you have triple A and have a discount code you can give them you will get a discount . My round trip reservation was 56 dollars for myself and my husband that does not include a tip they recommend a 15 % tip for the driver. ”

Flying out there.  I finally did a little research on Angel flights.  These are volunteer pilots with their own planes.  When you research put in volunteer and your State.  I did not add volunteer at first and one came up that does charge and the name is close to the same as Angel Flight.  Here is the link to 4 States  https://www.angelflightsoars.org/healthcare_faq.htm  Read everything because there are strict requirements.  This would be of great help to those who cannot sit while traveling.  I have not found a way to get discounts on National Airline flights as yet but I found this great blog with links to help you find some way to get out there with donated miles from others.  Don’t leave it until the last minute.  http://boardingarea.com/blogs/flyingwithfish/2008/12/12/donate-your-frequent-flyer-miles-to-charity-help-others-gain-good-karma

Update on flying.  A lady who recently had mesh removal at UCLA told me that there is another company that flies people who need medical treatment and they try everything to coordinate your surgery date with a pilot.  This is that company.  http://www.footprintsflights.org

Other than this, many women have asked friends, family, churches and co-workers to do fund raising for them.  If you do not ask, you do not receive.  A plate lunch sale can raise enough to pay for some of it.  You can’t do it, but others can.  A restaurant may donate cooking if you provide the food.  Ask!

I know your life is on the line.  I know how mesh takes you down, one day at a time.  Please get help to remove it by those who know how.  If you lay in bed and give up, everyone else around you will give up.  If you have had several partial removals and still have health issues, there is a possibility you can do better.  I know this because of one woman who had it in her for twelve years.

With love and support.  Linda………..

Update on help with flights.

The amazing thing about women helping women is how we share with each other not just our pain, but how to help each other get well.  It can be all forms of help and just talking to each other is a huge plus because of what we learn.  When we talk to each other it lessens what we have to deal with and we share how we deal with it.  Money is always a stress factor because to get the right help, it costs us a lot of money.  We still have to live and pay our way in life, so having the stress of mesh expenses weighs on us heavily.  So when I received a note from another woman who suffers greatly and will soon have mesh removal at UCLA, I was quite surprised she thought of me.  She told me she had applied for help to fly out to UCLA and home again after surgery and she had just received the tickets.  Total cost for her and the person who will accompany her, $70.00.  She told me I should look into it in case this would apply to me because once again I will be going back to UCLA for my fascia sling surgery and check if there are any problems that need fixing.  Hopefully this surgery will go smooth and I have promised I will write about what it entails because I cannot find anything about it from a patients view.

So how does this work.  The flight service is Mercy Medical Airlift and this is the link to their site.  http://v2.mmasystems.org/air/request.htm  When you go there you can click on the request help button and fill out the form.  In a few days you will receive an email with someone you can talk to.  For me I was put in touch with a very nice lady who called and spoke to me.  She told me she would email me instructions via another link.  Then she explained that I had to prove my income and get a professional to verify that what I said was true.  It could be a healthcare professional, a social worker or some other professional who knows what you are going through and understands your financially status.  So I decided that my personal care physician would be the best bet because  he did my pre-surgery testing before the mesh removal surgery and he will do my pre-surgery testing again next week for this new surgery.

I pulled out my Social Security year end statement and removed the S.S. number, then scanned it in.  I wrote a letter to my doctor explaining that I was trying to get help with my flight expense, although I had already asked him in person about this when I had my vitamin D3 test done, if he could do this for me and he said he could.  I went by my bank and asked for a statement from them about my income over the past year.  They have been wonderful and know what I am going through as they see how crippled I am and I have warned women there what can happen with this surgery.  So they wrote a letter for me verifying my income.  Then I took everything by my doctor’s office in an envelope and explained to one of the office staff what I needed.

A few days later I had a call from Mercy Airlift telling me the doctor had said he couldn’t do it.  So she advised me to call and talk to him.  When I did he told me I needed to talk to my accountant.  That really threw me.  I would not be asking for help if I needed to use an accountant.  So I called Mercy again and requested she explain to him that all they wanted was that he should verify who I am and what my circumstances were.  I wasn’t asking him to co-sign a loan so I didn’t think it would be this hard.  She did and explained to him what they did to help people with flights.  Finally he did it.

The Mercy lady was wonderful and she called to let me know that as soon as a sponsor picked up my flight, I would hear from her via email.  True to her word, she not only sent me an email but called me to say I would be receiving the tickets within a day or so. 

Yesterday afternoon they arrived and with them were instructions of how to book the flight  They are voucher tickets that are only good when you book the flight so don’t leave laying there them thinking it is already booked.  With it was an itinerary with what looked like it was pre-booked times but when I spoke to the Airline which is Southwest, I realized I could change the times of flying there and back.  Good thing because we will fly out of Hobby Airport in Houston that can be two to three hours drive according to traffic.  And the flight leaving L.A was set at 8 am which won’t be easy because I will only be two days away from surgery and rushing around early will be impossible.  So I changed it to 11.30 am.  So don’t think times are set in stone.  Be aware that the ticket dates cannot be changed so make sure you have everything set.

When should you try to use their service?  Well I don’t know if you can use it more than one time, so for me and the lady who is using it, the best time is for surgery.  Our health situation has already been confirmed and verified.  So when you go for consult and get a date for your surgery I would not wait any longer than two months before you go to UCLA.  It does take time.  I did have one glitch that almost threw me into a tizzy.  My dates for tests, surgery and seeing the doctor at UCLA has been set for weeks, but suddenly I got a letter in the mail telling me the doctor would not be in that day.  I was horrified, so I sent an email to the office and doctor telling them it was impossible for me to change the flight and everything had been booked.  It was quickly sorted and everything is fine.  So I suggest if this happens to you, put it in writing to the office AND the doctor via email. 

Don’t forget.  If you are eligible for this service you will also be eligible for the discount room at the Tiverton Hotel.  The link above will take you where you can fill out their form.  That hotel gets booked up quickly so BOOK THE ROOM AS SOON AS YOU GET A SURGERY DATE! 

I emailed the lady at Mercy Flights this morning thanking her for all her help and how grateful I am that there is such a service and their compassion.  Never forget to thank those who give you help.  I wish you luck.

 

 

19 Comments

  1. Jane Akre

    Wow Linda- Hit it out of the park again! Thank you!

    Reply
  2. Sue

    Thank you Linda, you have been a great help. You have given me the courage to battle on, and if I come up with any new findings involving Medi-Cal I will post them. I forgot to mention that the person I talked to at UCLA said that if I come to them for a consultation I will lose my Medi-Cal benefits, and that is a real hindrance. I will call the Med–Cal office on Monday and see if this is true. I have come a precipice in my life to where I am not totally bed ridden, but I am getting worse and I just can’t let it get that far (bed ridden). Do you think I could write to the Doctor who originally put it in and ask for a refund, considering I did not request this surgery in the first place? 🙂

    Reply
    1. lavalinda

      Sue, I am glad you are not just taking the word of someone on the telephone. The people that answer do not have all the answers and are often incorrect. I often think they make it up as they go. You are a very smart woman and you will get the answers you need because you are persisitent. I doubt if you will get any refund at all, but I would say, go ahead and try. Keep the letter factual and state what this has done to your life. Never give up. You deserve to have a better future.

      Reply
  3. donna collier

    I have a friend that works for Southwest Airlines that can get me cheap tickets for myself and my husband. I’m not sure where we could stay. And would I have to travel there more than one time? How soon do they let you fly home after your surgery? Thanks you in advance for your information.

    Reply
    1. lavalinda

      Donna everyone has to go for consultation the first time and then get a date for surgery. Please read this blog in case you are eligible and qualify for savings at the Tiverton. There is no hotel tax as it is a non profit hotel run by UCLA. http://teapapers.com/bladdersling/2012/11/mesh-removal-no-money/

      Reply
  4. Brenda Boling

    Dear Lavalinda, I left a blog earlier this week about my mesh bladder sling. I just finished reading your article about the people, hotels and airlines that are willing to help women get to UCLA. By the time I finished reading I was in tears. I just found out 3 weeks ago that I have a mesh sling and before then I hadn’t even heard of them. It would take pages to tell you what I have been through and wondered why God let me stay on this earth. I have lost contact with All friends and live likpe.a hermit because of my condition.Many specialists have GUESSED at what my problem is but no one could help. I have spent the last 2 wks going through old papers trying to find something that verified i had a sling put in and the manufacturer. I’m sure everyone has heard about the lawsuit that is going on now. I was turned down by everyone because I couldn’t produce a paper from the surgery and the Dr. retired many yrs. ago. I don’t even remember the date of surgery but know it was between 1997-1999. I have short term memory loss from another botched surgery that I will not go into. I want to thank you for the blog you started and feel like it is a miracle that I found it. I have been so confused. God Bless you and keep up the good work. I will be taking a trip to UCLA as soon as I can and we have the funds. I can’t thank you enough, Brenda Boling

    Reply
    1. lavalinda

      Brenda, when this happened to me I was so angry and wondered why. I tried everything to find out what to do, then I took my anger, tears and frustration and began this blog. Yes, those friends left but they were not friends. Real friends hang around on our darkest days. Thee are few of them. But you do have a purpose. First to get well and second to share with others. I do this even on my darkest days and find I do have a purpose. You can help more women by what you have been through, than you ever realize. Hang in. Life can get so much better. I hope you find those records and low the blog I wrote to help. Other women have struggled with this and then remembered small things. If you know the doctor who put it in you that is your first lead. Try to be nice to someone who works there and see what you an dig up. One memory will lead to anther. The records will be at the hospital not at the doctors office and they may be in storage. If you can remember the month it was put in, maybe it will help with the search.

      Reply
  5. lynda

    Hi, I have read your blog and can relate to many of the injury mentioned I would love to remove this mesh as well but I have ny Medicaid with an HMO I am not sure if they cover this procedure out there in California I would like to know if you can tell me what would this procedure cost if I had to pay cash for it.Thank You I a also suffering in silence and very sacred .

    Reply
    1. lavalinda

      Lynda, I actually wrote a blog about this because Canadian women are going to UCLA because they don’t have surgeons who can remove it all. No one can give an exact amount but read this. http://teapapers.com/bladdersling/2013/03/paying-cash-for-surgery/

      Reply
  6. Carla Sais-van de Perre

    Hi Linda,

    Unfortunately I live in The Netherlands, no doctor here capable of performing a TVT removal! No way I’m able to afford going to see Dr. Raz at UCLA. So many other victims like me.

    Reply
    1. lavalinda

      Carla, I know this is happening all over the world and I applaud you for making that clear. I wish there was a way to get you here but we have not been able to raise any money because it seems to be a forbidden subject.

      Reply
  7. Teresa

    I had a mesh sling put in January 2009 then started having problems with a uti every time I went to the doctor. Then had to have a piece cut out. Then incontinent again had a second sling put in another piece cut out. Now I an incontinent again. Only to hear my doctor blame me for the second sling failing. He said I must have strained a lot. I also have blood in urine often,a high white blood count he didn’t seem concerned about, he said I might have ic, pain very low in that goes into my low back.i think I have fibromyalgia because I hurt every where. I have other things going on too. Can someone tell me how much for the operation and other expenses I will be comming from Tennessee. Thank you

    Reply
    1. lavalinda

      Teresa no one can give you an exact cost because it all depends on type of mesh, how long the hospital stay etc. Consult with Dr. Raz runs $700 and you can read more here. http://teapapers.com/bladdersling/2013/03/paying-cash-for-surgery/ The mesh is causing all your pain.

      Reply
      1. Teresa Johnson

        Will Tenn care cover the operation?

        Reply
        1. lavalinda

          Teresa I know women from some States have gone to UCLA but I cannot say. Call UCLA and ask what they take.

          Reply
    2. Helen

      I went from Tennessee, and i think that I paid about $1200 for the surgery after insurance paid their portion. This is not counting food and hotel room and transportation.

      Reply
  8. Melissa

    Do you have any suggestions for people who don’t have insurance and have to live off of $460 dollars a month. I can not afford the $200 dollar a month Obamacare nor do I qualify for Medicaid. Healthcare .gov says that I am one of those unfortunate few thousand people that fell through the insurance crack in Florida. I am in so much pain all over and not even the hospital will help me because they say it is not life threatening at the time. The Dr. that put it in says that I need $350 per visit just to talk to him. I don’t know what to do does anyone know how I can get this thing out of me!!!!!!?

    Reply
    1. lavalinda

      Melissa I wish I did. I trusted people in the past who I thought would do fund raisers but they never came through. All they wanted was to use me to get to other women. I thought if you lived on such a small income, you would be able to get Obamacare without cost? I hope others will read your comment and have suggestions.

      Reply
  9. Kenda

    I read blogs about mesh everyday trying to find an answer. I want to get this out. I am in CA only because we had to turn to my inlaws for help. Soon not to feel wanted and shoved from one to another. I live in MD where my children are. This mesh took everything. If something doesn’t change I don’t even want to struggle to breathe anymore. I need my children. I have 2 grand kids. Never seen them. My youngest graduates next year. Not only is it physical pain but mental pain. I force myself and have to talk to myself to keep from losing it. This has caused my kidney disease to progress to stage 5 quickly. I won’t do dialysis here. I don’t wanna die here. I want to go home but how when coloplast took my home and car and tried to kill me. Right? I can’t afford personal hygiene things I need for a normal woman but now I need much more. I feel like a bum. I have always been very proud of myself and have overcome the death of my mother at 14 and being molested for years as a child by family but this brings everything back to me like it was yesterday. Now my legs and feet swell and get red and hot. I feel like things are biting my legs or something is shocking me is that mesh related too ? I’ll pray for each of u today and forever.

    Reply

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