Mesh & Going to UCLA

This is the second blog I have written about going out to see the great surgeons at UCLA.  The first one I wrote after I flew out there for my consultation with Dr. Raz.  I wrote it from the prospect of flying and all the various costs of getting there and back.  You can see that blog here

http://meshangels.com/2012/06/mesh-dr-raz-u-c-l-a

This blog is for the people who cannot sit and can stand only for short periods and therefore cannot fly on a normal aircraft.  If you do not know much about mesh complications and are reading this, you may wonder why they cannot sit.  Sadly many women with long term mesh become disabled completely and cannot walk very much, nor sit and have to lay due to overwhelming pain when they try to sit.  This makes their life completely miserable and difficult and they live on narcotic pain meds.  So to get out to L.A. from their own State, they and their families have to think differently.

A few months ago I wrote a blog about a how mesh destroys lives.  A lady left a comment telling about how her life had been changed from living with mesh complications for eleven years.  You can reread it on my blog Mesh Destroys Lives, April the 8th 2012.  This is the lady who has made me understand that every woman faces a different plight.  She called me a couple of nights ago to ask me for help again.  She will have mesh removal one week after me at UCLA and her date is Oct 18th.  Her husband had set up a bed in the back of a van to drive three days each way from Oklahoma to California to get her to see Dr. Raz for a consult appointment in the hopes he could help her.  Her husband has his own health issues and driving out there is not easy for him either.  But he was determined to help her.

Robin told me they had a small rent house and sold it recently to prepare a better way for them to travel out there for surgery next month.  They bought a 30′ used motor home so that she could travel with more comfort and her husband could stay in it while she is in hospital.  Parking it close to UCLA was the big problem.  The traffic is very bad in that City and they also need transportation from where it is parked to UCLA.  So I put out a call to everyone I knew asking for help for her and others who will face this dilemma.

The women who are severely injured by mesh, still want to help others even in a small way.  Their pain and circumstances are often a big factor, but they are great with suggestions to help others.  It was less than a day before I had answers for her from a lovely lady and now she should be fine.  But of course there may be many others who have the same problem now or in the future so I needed more suggestions.  I asked and some lovely ladies answered, even ones who do not have any mesh in their bodies.  I so appreciate their kindness.

So if you are a family member trying to help your loved one and have a similar or other problem, this is the first link and suggestion.  Sometimes they say that you cannot see the wood for the trees.  This is where I am at now as I prepare for my own upcoming surgery and that is why I reach out for advice from others.

http://www.uclahealth.org/body.cfm?id=121#Churches  One lovely lady suggested that perhaps a church close by UCLA would allow her to park in their parking lot.  I thought that was such a great idea and ran with it.  Another lady began digging and came up with the link above.  I did not think to look on the UCLA website for resources, but not only is there a list of churches, there is everything else you may be wondering about.

I do not know if your religious denomination will be of any question for a church to help you and I hope not, so when a lovely non mesh friend Jaime made a call to this church, she was met with a great response after talking to a lady by the name of Myra.  This is their details

  •  call MYRA at Westwood Presbyterian – 310.474.4535.
  • And here is another church close to UCLA

http://www.sp-apostle.org

Another suggestion was from another lady suffering from mesh complications.  She told me this.

  • most all Elks clubs have RV parking too.  She also said that all cities have small buses with wheelchair facilities and your insurance may pay for it.   She said to Google it.  I did and here is the link
  • http://www.laalmanac.com/social/so11.htm

I hope all this will help anyone who is in any difficult health related position regardless if it is mesh or non mesh related.  I know most of us like our independence and struggle with such a loss of it since bladder sling mesh was put into our bodies, but as I tell many women, it does not hurt to ask for help.  Ask your friends, co workers or church to help you with a fundraiser for the expenses.  You can always pay it back some day to someone else who needs help.  You have to get well to be of use to yourself, your family and anyone else in life.  You must make a stand and put yourself first for a change.  The time is now.

17 Comments

  1. Paula

    I have a question…. How long do you have to stay in California after the surgery? Surely after being cut open one cannot be able to fly right away. Also, some people say they have 3 appointments with Dr. Raz (2 before surgery and 1 the day of surgery). Is that the norm?

    Thanks 🙂

    Reply
    1. Cindy

      Hello, I’m on the east coast and with some of the best hospitals in Maryland (Johns Hopkins) I can’ t believe their are no doctors here who can remove this. Do you have to make three trips.

      Reply
      1. lavalinda

        Cindy, I do understand there are good hospitals everywhere and many doctors who claim to remove mesh. But can they also remove the anchors. Do the do the translabial ultrasound. I am afraid that is what you are up against. You go out there twice to UCLA unless your insurance wants you to go 3 times. The first time is consult to decide if mesh is causing your complications. They know instantly if it is as they have now done thousands of removals. The second time for tests and surgery. If your insurance company says more, you can argue and win.

        Reply
  2. teresa

    Hi, I am also wanting to know how long you stayed after surgery? I have my apt with Dr Raz August 20th 2013 and I am still filled with questions. Any extra help on the process of the test and how long the stay will be will help a lot. Thank you so much for your help to all of us women who suffer with this mesh @#$#!! You are a godsend.

    Reply
    1. lavalinda

      When yiu go to him he will evaluate your case and then you can ask him what he thinks. If it is a simple (Not really) one sling without serious complications, perhaps you can fly home four days. If you want to stay to hae the cath removed before you head home, he will do it a week later and then you can go home. So is sugery is Thursday it will be the next Wednesday. Everyhting depends on how much mesh is in you, how difficult it will be to remove, and if your health is poor. Only Dr. Raz can go over that with you. I wish you so much luck.

      Reply
  3. teresa

    Linda, thank you so much for all of your help and information. Everyday I am reading a different part of your blog. I hope all goes well as I know you at UCLA right now. You are the best hope and resource for all of us MESHED up women!!!

    Reply
    1. lavalinda

      Teresa I am glad to be of help.

      Reply
  4. Tracey

    Hi i am to all meshed up with swelling in feet hands ankles and wrist, finding it hard to now drive my car! Tired of taking pain killers unfortunatly i am in AUSTRALIA and cant seem to find a decent surgeon to take this dam stuff out can any body help

    Reply
    1. lavalinda

      I know someone down under and I will send them your email.

      Reply
  5. lillianpennington

    what other help can we get other than the bladder sling surgery . I need this surgery to ?

    Reply
    1. lavalinda

      I just answered your question and the answer is, look to the right and view the blog about alternatives.

      Reply
  6. Susan

    I need help I believe I had mesh inserted from having a hysterectomy in 2001, the pain is unbearable, no one believes me..I have been told I have phantom pain and cant find a doctor to address my problem…how do I start?

    Reply
    1. lavalinda
  7. gina

    Because we are all trying to get the best care. And trying to make it affordable with family. I am going for mesh removal with Dr. Razz in June. Has anyone thought about or used House swap? I’m lookibg into Homelink, to see if I can save money this, way on the stay. Please let me know if anyone has done this. Thank you its much appreciated.

    Reply
    1. lavalinda

      I don’t know anyone but if you can find a place close to UCLA it may help especially for a family.

      Reply
  8. AllmeshedUp

    I have no idea what post op care is like in CA. But at the Atlanta drs who are all over the internet with their services, it is horrible. I need a second bladder procedure and feel like they dropped the ball.

    They have no time for their out of town patients after the mesh is out. The nurse is very bad about wanting to take time with you.

    I feel devastated that I now need a Burch proc. And cannot feel comfortable with this group.

    This Dr does not even see his mesh patients for post op. An asst does. Think twice before going out of town.

    Reply
    1. lavalinda

      Allmeshedup I can assure you it is great. Dr. Raz never gives up and you can reschedule a follow up surgery any time. They do the Burch all the time.

      Reply

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