Becoming a Mesh Survivor

Yesterday I had a lovely talk with a woman who should be described as a true miracle mesh survivor. She called to tell me she went to see a doctor that she had been to see before the mesh was removed. She said when she walked into his office He just stared at her. Then he said “I can’t believe it. You look so good”. Why? Because the last time he saw her she was at death’s door. Seriously she was at what should have been the end of her life. But she never gave up…. This doctor told her she was a miracle and she is because she never stared at the open door of death as one she was ready to walk through. That is a decision we all have to make for ourselves. Instead she beat down doors to get out to UCLA and Dr. Raz removed her mesh in May of 2012. Yes it was touch and go but she survived it because of the great hands of this special surgeon. And she is a miracle. You too can be another miracle survivor.

I still find it hard to believe it wasn’t that long ago when she contacted me with a short one line sentence. You can read that blog here. http://meshangels.com/2012/03/mesh-can-kill-you It has been just over one year since she sent me that note and it is amazing what a difference a year can make in a person’s life. By all right’s she should be dead but she is alive……… You may read this blog thinking there is no hope for you and life is not worth living. I can’t change your attitude and give you the will to fight to live, only you can do that. I can’t make you believe you have a purpose and a reason to be on this earth, only you can do that. But life is worth living and you too can be a mesh survivor.

Attitude. Attitude is a giant part of how we look at our survival in this race called mesh. If you have a defeatist attitude before you begin, then no one can break through and show you the way. It is up to you to change it. I have always been the kind of person who looks outside on a rainy cloudy day and thinks “They’ll soon be a ray of sunshine coming through”. I believe that life is for living and even on the worst day, there is a reason why I am on this earth. Attitude can make a big difference as to how we tackle life and controlling your attitude and using it to get through the perils of life can make all the difference to your survival.

Why me? Poor me! The one thing I have learned through my own life is that everyone around us gets sick of hearing the same thing. “I hurt”. “I’m in so much pain today”. “Why did this happen to me?” The answer isn’t there and those around you cannot help you get through this. Only you can get through it hour by hour in the best way possible. And yes, mesh is a life filled with agony and anguish. So be careful. Don’t push away those you love and who love you by repeating your pain over and over again. They know you hurt. They see it and yet they cannot do anything to take it away. There is a very fine line between caring about your suffering and being tired of it. No it isn’t right, but it is the truth. Try hard to smile at them even through your pain and try to show them you are doing the best you can with a terrible situation. Then perhaps they won’t run away from you in you worst hour of need.

I have written so many blogs here that I know it is difficult for you to find your way through them so today, before I head out to UCLA to have fascia sling surgery; I am going to give you an index of what it takes to become a mesh survivor. However, if you are someone who wants a guarantee before you make the trip to a better life, I am sorry, neither I nor the doctors who do a really good job of removing all the mesh and arms/anchors without injuring you further can give it to you. All we can provide you with is hope for a better life.

If you know you will have mesh removal soon but have not taken steps to take supplements to help you through the time, then you should look into a serious plan of action to stay on the best course of wellness that you possibly can. I am not talking a one a day multi vitamin. I’m talking about a way to protect your whole immune system from being totally destroyed. Only you can decide what you want to take and what your situation is, but I wrote about the many things I take. You need to set up your own plan of action and become a future mesh survivor. This is a guide only. http://meshangels.com/2013/02/running-a-mesh-marathon When you go out for surgery make sure you take your supplements with you and begin them as soon as possible after your surgery is over. Eat small meals even when you don’t have an appetite. Make sure you take what you need to make sure you do not get constipated and don’t wait to begin that either. The worst thing you need is to be terribly constipated and pushing after you’ve gone through the mesh removal.

 

At first you will have a lot to concentrate on and do to get through the surgery ordeal and the trip home. You will feel euphoria after you know it is all gone and you survived. Then you will hit a slump and that slump will be amplified by those around you who think two weeks has gone by and you should be up and running. I wrote a blog for you to share with your family and friends and this is the link. http://meshangels.com/2012/12/mesh-removal-blues Frankly if they don’t get it after you give them this blog to read, then all I can say is change friends.

 

Please, please expect it to take three months before you will begin to feel better. Then expect it to take six months before you will be able to resume some of your normal activities. Then sadly they may be restricted if you had serious nerve damage before the surgery. I am one of those women who have to live with it, but that is the key. Learn to live. I have not been able to change the path of downward events to show the world what mesh has done and will continue to do to women around the world. Believe me it is quite depressing to not be able to change it, but then again Rome was not built in a day. And it was not built by one person. If every woman speaks to another and another about what has happened to her, you can change the future of one woman’s world. How do I know this?

 

One lady I know cannot have her mesh removed because she has a rare lung disease and she cannot get through the surgery. This woman is very inspiring because she does reaches out to others to get the word out. She told me that she just met a woman who told her she too was sick. The lady began carefully with her own story and before she knew it the women looked at her and said “I had a sling put in me too. Could this be why I am in so much pain and feel so ill?” She gave her my blog address and told her the best place to find out was UCLA. No she cannot go herself but she unselfishly wants to help others. You can do this too.

 

It may seem hard to believe but there are now many mesh survivors who made their way out to UCLA by fighting to get there. This blog is not that old and many have had only had removal in the past few months. I am now seeing those unselfish women who leave comments here on various blogs to let women know they did survive and life will get better if they make the effort to go to the right doctor.

 

All I can say to you is this. I am a mesh survivor……………….

This is my journey and that of many women who take the first step. http://meshangels.com/2013/02/mesh-is-a-journey

 

 

 

 

 

 

4 Comments

  1. robinest58@aol.com

    HI LINDA!, I am SO glad I looked at the site again today, I KNEW you were getting your fascia sling surgery! I emailed you earlier about going back in June to Dr. R to get an Inter Stem because though I had ALL my mesh/sling removed in Oct. 2012 and was able to walk the next day because it affected my leg nerves the last 6 months to the point I could not walk without a cane and then not very well! I COULD walk the NEXT day, I am the one who had a mesh sling since 2001,almost 12 yrs! SO it is Ironic that in June 2013 I will be getting what I HOPE is my Last surgery related to the sling I had put in SO MANY yrs ago without my knowledge during another operation, I will have this next surgery in June 2013 exactly 12 yrs later.

    To those of you new my story is in 12 years of Hell Now a Beacon of Light! I and others owe SO MUCH to Linda, I feel she is a true friend after this last yr of 4 road trips from OK to Ca. 1st in a VAN with an air mattress in back last June!, last two in our RV with my husband driving. We have sold two rentals, cars, scrap metal you name it! Plus last time our church donated money to us for the cause. Some of our Grown Children have gave us money showing there IS A GOD!!! as I know personally!

    My husband is worried to PIECES! (AS USUAL) about funding this last trip. I have to get an Inter Stem because when I went back to Dr. R in Feb when my local Dr. wouldn’t follow his recommendations for Meds from the Day I got home in early March, I still hurt SO BADLY in my pelvic area that has had spasms for 12yrs. He had me have another scan ran here and after he read it called me the next day and asked us to come back out for more tests. He ran 4 hrs of tests and said I HAVE TINY BITS OF THE MESH IN MY NERVES-HE WILL BE UNABLE TO EVER REMOVE-SO I AM PERMANENTLY DISABLED IN THOSE NERVES. I know I should NOT have been surprised but to actually hear the words still took me back.! I always had in the back of my head perhaps SOME day it will all be over! But knew in reality not likely!
    I KNEW this was a real possibility the very 1st trip I took when he learned I had had a mesh sling 12 yrs, longer than anyone he had operated on to that point. He said because of the length of time that DAY I might have to get an Inter Stem after the removal. An Inter Stem is a device they hook to your bladder and pelvic nerves to help control the never ending pain signals mine are STILL sending! I was given the RIGHT meds to go home but still have the same intense pain most of the time except the few hrs the meds sometimes work a little and when I am in a swimming pool. We have a large in ground swimming pool with a thermal cover that will heat it up much sooner like it did last yr. But my overwhelmed husband hasn’t done it yet and truthfully it will be another hard thing to pay for the chemicals$ but I count it as a PRIORITY thing because I do not have ANY PAIN when in the pool emerged from waist down at least!

    For the last 12 yrs it has been like that, until my Father passed who had Alzheimer’s and lived in an attached apartment in front of the pool so I ended up not using it as much. But after he passed in 2009 I started using it every day 30, 45 minutes then an hour or more of just moving around and being Pain FREE! Not only did I get pain relief but lost LOTS of weight! Up to 100 lbs, I’ve gained 25 back since the sling made me bed bound and am trying like HECK to keep it at that much until after this next operation! I would make plans in my head of doing this or that when in the water pain free and the minute I stepped out! my body told me NOPE CAN’T do it!

    Anyway July 24th Dr. R. will do the 1st stage of the Inter Stem which is attaching it to the right nerves that will help stop the pain hopefully. It has to be done while I am in a TWILIGHT anesthetic to be able to tell him when he has reached the RIGHT nerves. Then I wear the unit OUTSIDE my body for a week and IF it works then July 1st he puts it under my skin like a pacemaker.
    I asked him about follow up visits for it etc. like battery changes? Every 10 yrs I think, I had found a Dr. who was an intern of his in a neighboring state about 3-4 hrs from me. I asked Dr.R. if HE would follow his advice. He said YES, he was one of the best interns he had! So that was GOOD NEWS. But when it comes to operating on me I want NO one but Dr. R. since he DID enable me to walk the next day and was able to get my sling and all the growth out it had made over 12 yrs! It had grown into a MONSTER wrapped around and around my Urethra! NO wonder I could not sit for 12 yrs! Then it had made two GROWTHS a BIG one on the left side where I have always had more pain and a slightly smaller one on the right side that had just started getting into the leg muscles! It took him 2-3 times the usual amount of time for a sling removal. He did not have ALL the facts even though the ultrasound showed SCARY things so he scheduled my surgery for 5:30 a.m. the first one of the day, sure enough he DID need extra time and told how hard it was to get the left mass out! It had had 12 yrs to IMPLANT itself and NOT want to let go! But all tissues etc. taken out were Benign THANK GOD!

    Linda is right about the good attitude thing for SURE. I too get down in the DEEP quagmire of self pity why me etc. still do some days but not as often, before I met Linda and had got to the point of not being able to even WALK I sometimes asked God just to take me home at night! But I would look around at the rescued cats and little dog and realize THEY were glad I was still there! ONE cat KNOWS when I am in MOST pain and lays EXACTLY on place it hurts, he senses it and his warm body feels good. So they helped me so many ways! I TRY hard to keep a GOOD attitude and be thankful most of the time! When the young lady gave me the last ultrasound there she said “MY you have SUCH a GOOD attitude!, most women I do this with are very soured on life and have a very bad outlook and attitude! I told her THANK YOU,’IF I have one it is ALL to God’s credit, my friends, MY mesh sisters and my ever close husband who has not gave up!”

    We met other couples there last trip, some for first time some later or after. ALL said they stayed together because of their FAITH in GOD! Some made my husband realize he didn’t have the WORST duties a husband could have! PLEASE everyone PRAY FOR LINDA! PLEASE LINDA Contact me WHEN YOU can and are able to-PLUS ONE MORE THING? PLEASE PRAY FOR MY HUSBAND TO HAVE CONTINUED STRENGTH AND POSITIVE OUTLOOK and for God to reveal HIS way for our financial NEEDS that will be met again as we do what WE are supposed to do! I am sorry I don’t post as often as I should, I have feelers out there to tell women of this BIG PROBLEM as anonymously as I am supposed to be! I have prevented 3 from having one, BUT I worry when I heard the other day a wife of my husband’s friend’s MAY have had one! UGH! I try to put word out wherever I can despite legal things going on at full steam!

    My oldest Granddaughter still has to crawl up in bed to say hi when she comes for a visit in the morning, the first dose I just CANNOT hardly move and it takes a while, the other day my husband MOSTLY kept the youngest one almost 2 , I tried to help what I could! Although we BOTH were WORE out we were SO grateful to have had time with her we don’t have NEARLY as much as we did the first. AND MY husband found out he will be a GRANDPA to his first blood grandson in Sept although WE had a ready made 4 yr old join the family when his son (who I counted as mine for almost 20 yrs now!) married over a yr ago.

    Things like that make me remember I STILL have ways to go and it is up to God how far,I missed our son’s wedding last yr,our youngest granddaughter’s first birthday, our oldest granddaughter’s Open House and assembly at school. BUT my grown Daughter BLESS her heart, UNDERSTANDS and works around it, having her visit me afterwards with videos etc. Each time I traveled the LONG 1500 miles TO L.A. my oldest granddaughter made me a SPECIAL picture to hang by the bed I lay on in the back of the RV! LAST trip I saw MY SON and his girlfriend the first time in 2 yrs! since another long story about his real “Father” dying the minute he got back from overseas service, no one would claim the body so he did, but this time as a 29yr old man not the 11 yr old boy his real “Dad’ left 18 yrs earlier never to see again. IT REALLY did him in mentally but I know my SON IS coming back, I could tell it last time. HIS LONG STRONG HUGS WERE the best medicine I had had in 2yrs! SO GOD DOES ANSWER prayers just not when, how etc. we will know! BUT if we do our part he GIVES us the Strength to do so!

    Also thanks to the ANGEL family that lets us park our RV each time even though the older Father of the family passed last Dec. shortly after I met him for my surgery, his daughter also had one. He and his wife had been missionaries and have opened their home and now hers to us each time. I was SO privileged to meet him, My Daughter said “MOM GOD MUST HAVE HAD ONE MORE MISSION FOR HIM TO DO, HELP YOU AND HIS DAUGHTER! “His widow and extended family have continued to be kind beyond words! Seeing people like this makes me realize there are STILL GOOD CARING people in this world! NOTHING can ever repay them but trying to help someone else! The father was Norwegian like my late Dad and I KNOW there are TWO NORWEGIAN angels in HEAVEN watching over me!

    Remember like Linda said” YOU ARE WORTH IT, NO MATTER WHAT YOU HAVE TO DO TO GET HELP!” IF you think others rely on you, they will NOT and CANNOT if you are worse or gone!YOU HAVE to do it for YOURSELF!BEST WISHES LINDA-WE LOVE YOU! YOU ARE IN OUR PRAYERS!RR

    Reply
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  3. Donna

    First of all, thank you SO much, Linda, for your blogs. I have learned SO much and have avoided the pitfalls of listening to my “new” urogynecologist, who is recommending removal of one of the arms of my sling to relieve my 24/7 pelvic pain (in addition to a LOT of other symptoms during these 3 1/2 years since my mesh implant!)

    I have a November appointment for consultation with Dr. Raz, and truly look forward to it! Since my mesh implant, I have had so many doctor appointments about my many symptoms (and feeling that I am “dying a slow death”) that I cannot count them all. NONE of my doctors has a “clue.” I have lost a great deal of faith in the medical community during my “mesh nightmare!:”

    I have a question. Have any of you been diagnosed with a macular hole in your retina which required a vitrectomy?

    Thanks for your anticipated responses!

    Reply
    1. lavalinda

      Donna I have not heard of this but you can be sure to ask Dr. Raz

      Reply

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