Mesh & Birthdays
The following post was supposed to go up on Friday the date of my birth but I have plans for that day and need to get ready so I am posting it today. I hope it will be insightful for all I have learned over the past four years.
This morning when I got up I looked back at four years ago on my sixty third birthday, when I was in the early stages of my mesh journey. My simple little surgery in March of that year had already turned into two surgeries by that time and my bank account was drained. I was doing self cath all the time because my bladder was in such distress and I couldn’t empty on my own. The leg pain was becoming more noticeable every day and I was sleep deprived. More and more bills were coming in every day from laboratories for $100 to $150.00 a pop for culture tests because the infections wouldn’t quit. I was only three and a half months post op and was still traveling back to the surgeon once a week in heavy traffic, two hours each way. But I was still optimistic at that time, thinking this would all change as soon as I got myself well. How naive was I?
This is why I am writing today to give the best Birthday gift I can possibly give to any woman who hasn’t yet had mesh put into her body. Please don’t do it because your future birthdays will be like mine. The difficult and painful birthdays of a mesh injured woman.
My journey began on March 9th 2010 and I didn’t know at the time I was going to become an invalid. I didn’t know that my driving freedom would be gone. I didn’t know about the pain that was going to become part of my everyday life. I didn’t know that I would have many money worries. I didn’t know then that I was going to learn the hardest lessons of my entire life.
I am sixty seven years old today. I used to think things like ‘sixty-seven years young’, before mesh changed things for me. Before mesh I had the most amazing credit because I paid cash for everything and with my husband built our homes from the ground up doing all the work ourselves to save money and own our home. I never owed money. I never worried how I was going to pay a bill because I never over extended myself. But the mesh journey changes everything.
The first lesson I learned is that paying cash up front for a surgery doesn’t mean that that big hunk of money is the end of it. From there on there will be more and higher bills that was first quoted to you and like I said, piles of lab fees. Lab fees from the hospital which are billed separately. Even though your fee will include post op visits with your surgeon it doesn’t include all the lab fees
which will be never ending, months after your surgery.
The second lesson I learned is that my nice five star surgeon had her own agenda. That agenda was to deny that I was having complications and my mesh was causing me more hell than helping anything. In fact I was told flat out I must have had this problem before.
Next lesson is when you can’t sleep and know you have to do something about what is happening to you, you have no clue where to start.
When you finally come to the realization that your doctor wants you to go away and never come back, you are alone with your pain. You will look fine on the outside and everyone thinks you must be fine and they have other things to worry about to make their own living. Your pain is not anyone’s priority but yours. Thankfully I had a daughter who could see my suffering even though she did not understand it.
Then you’ll get mad. When you get mad you decide there must be a way to sue the doctor for doing this to you. Wow! What a joke that is. You can’t sue doctors because they are protected. Huge lesson learned.
So instead you decide to see if any lawyer will take your case. You hunt through the Internet, leave messages that won’t be answered. Make calls and you will be told “Sorry we aren’t taking those cases any more”. Yes my lesson was to realize a lawsuit had happened before but it had been settled and had gone away. Whoosh! What lawsuit? No one talks about anything.
I finally found a lawyer who called me back and the woman on the other end of the line was sympathetic and told me she believed me but did I know what had been put into me? What do you mean what was it? Lesson that day there were many types of these implants and my mind was boggled. Implants? What was that? I didn’t have an implant surely! Implants must be knees and hips. Oh my God! How stupid and ignorant I was back then.
Next lesson. My doctor would just tell me what she put into me and give me the paperwork right? Once again stupid! I called the doctor’s office and asked. Not that easy. Make an appointment and request it. Then go down to the basement and PAY for my own records.
Meltdown again and a lot of tears but I did it. Guess what? Huge lesson learned. Doctor do not include that information in her records at all, in fact she didn’t include the fact that she had done a second surgery on me. Gone baby gone….
Called lawyer’s office back. Get them from the hospital. How I wondered? I was totally clueless and nothing on the Internet gave me a real clear answer. But I called the hospital and found out the phone number of the records department. Then once again heard, make an appointment, drive down town and you can PAY for your own records. I couldn’t drive and all this was on my daughter. Two hours each way, parking fees of down town Houston prices and a long walk to the records office in a lot of pain. Then “The price is $80”. What? Shock and horror. Another hunk of money I didn’t have and had to throw on my over taxed credit card. But I had to do it.
I called the lawyer back and she told me yes they could help. I say lawyer, but she is the co-counsel legal secretary who I must admit has always been there for me to answer any questions. I have never spoken once to her boss.
New lesson learned. These cases are held together until the FDA throws out a new warning. That happened in July 2011, sixteen months after the mesh was put into my body. I remember seeing the notice and wanted to but couldn’t, jump for joy. Naively I thought “Now they’ll take it off the market”. Once again stupid and totally not understanding of how all this works. You know what did happen? Suddenly all the lawyers jumped in from everywhere and it became a feeding frenzy. Everyone wants a piece of you. Not the piece injured, but a big piece of what your injured body will earn in the future.
Then you wait years!
You deal with the pain and all the crazy things that begin to happen to you. Leg pain getting to heightened stage. Falls when your leg goes under you from nerve pain and more money to have a cast put onto your damaged wrist. More money I didn’t have. You have to come up with even more money to add supplements so that you don’t lose your kidneys due to infections. You grudgingly buy your first walking stick and then a walker. You feel ten years older than you did a few months ago.
But you still have hope. Then you have to figure out who to choose to have your mesh removed and just pray you made the right choice.
Then there are a million extra expenses that you wonder how you will pay for. Your trip, hotel bills and many other costs you know will happen because by this time you have wised up about hospitals and doctors’ bills.
I had an older car, ten years old in good shape that sat in the driveway costing taxes and insurance bills. Time to sell my car to get the travel money. My car was gone!
By this time two years later I was about to get on the senior citizen Medicare medical program and boy did I FEEL like a senior. I had wised up somewhat due to all the mesh injured women I connected with and planned to make a long flight from Texas to California. I say long trip because the United State is massive and it takes days to go by car and even higher expenses of gas, wear and tear on the vehicle and more hotel bill stops, so common sense says you have to fly. I had to fight all the negatives in my head such as “How was I going to make a flight while living in pain. How was I going to make a flight home after a surgery?” But I had to stomp on all my fears and just go with it.
Next lesson. Consult! Not cheap to see the best surgeon in the world, but for a change I didn’t grudge him one penny. He was worth every bit of what he earned because he knows his stuff. No bullshit about there’s nothing wrong with mesh.
This photo was taken was after my consult with Dr. Raz on June 5th 2012, a very LONG two years three months after the mesh was put into me. Another lesson I learned. Nerve blocks hurt like hell and don’t last long. But he did it because he suspected that the mesh was in my femoral nerve and wanted to see if he was right. He was. Another mesh injured lady drove us to the beach to show us the Santa Monica pier. She parked in the invalid area so I didn’t have to walk too far and I had my walking stick to lien on. Here I hid it from view in this photo because I hated relying on a walking stick. They were for old people right? A huge lesson after this. The walking stick was going to be a permanent part of my life and there was no sense in hiding it. Within two hours the pain was coming back and you can see it on my face in this photo. I wanted to hide it so my daughter had an enjoyable day because she had accompanied me, but you can’t always hide this kind of pain even though that is what women try hard to do so their family can have some kind of enjoyment.
Now I had a new lesson to learn. How to wait it out for the removal surgery. Not easy I may say when the pain has become more heightened and a new change scared me. Vagina feeling like it was on fire! But I joked it off to my daughter because what else could I do. Cry? I had already done enough of that and it didn’t help.
That lesson was how to get through four and a half months of waiting. I can now give you the answer. One day or even one hour at a time.
By this time I was very lucky and had a good lesson learned. I had ‘met’ many mesh injured women over the phone and knew they understood what it was like to deal with this and it is nice to have likeminded supporters. But as always not everything is good.
Personalities, women’s circumstances, financially and personally combined in one pot can be explosive!
Next lesson learned. Well, not everyone is who they are first perceived to be. There are people who will use you to get a story. Make news for their own agendas. Try to figure out how to make money from your situation. For me it became more. This blog took off at lightning speed. Then came the shark loan lawyers who wanted to place an advert on my blog all in the name of helping women. More hard lessons to learn, but its all part of the learning process of how these lawsuits work. Every one of us is a mark.
More lessons to learn once again. A law suit takes many years and you will be so broke in several ways, and while you wait and you will wonder if it will even be worth it at all.
I’m still learning on that one but I can tell you I have learned the biggest lesson of all. Silence will mean thousands of women in the future will be injured by mesh. They WILL be exactly where I was at the very beginning of my journey. Shocked, stunned, confused, sad, angry forlorn and devastated.
And four years later still wondering about the question “Why is this happening to women”.
So what is my birthday gift to the world? When any arrogant self-centered doctor looks at you and says “We don’t use that mesh” or “it is surgical error, not the fault of mesh”, RUN LIKE HELL!
So as today is my birthday my daughter presented me with a gift that cost little money but means the world to me. The T-Shirt cost $3 for an outlet store nearby and she used the ‘dark’ T-Shirt heat set paper we had already and put my logon on it for me to wear for a future project. Our first documentary about mesh. It will cost very little because my daughter is a high tech expert and will do all the work. That will be a far greater gift for all non-mesh injured women so that they can enjoy many birthdays pain and mesh free. Happy Birthday to all of you and I hope you will have MANY more.
So what else did I have to learn. One surgery turned into two and then five. Now I probably need another and I am so scared of all the side effects of antibiotics. Anything can happen in any surgery and the biggest lesson of all For some women including me the mesh journey never ends. That is why I want to change things for the future of all women.