The UCLA Journey
Before you begin reading this blog and click on links I have given you, there is something very, very important you need to know. Whichever doctor you decide to go to, your decision may be thwarted by your insurance company. They are happy to take your money and have no clue how difficult these mesh removal surgeries are. So before you make an appointment it is wise to call the office of any doctor and ask which insurance they take. It may cost you a bit more to get a good one, but it can mean the difference of doing well or not, after removal. Your insurance company may believe any doctor can do the job, so learn as much about the type of implant(s) in your body and find out what it will take to remove it and any anchors used to put it in your body. Get your operative reports and study them, then Google anything you don’t understand. If your insurance refuses to pay, present them with the best possible plan for removal and tell them why you MUST go to the doctor of your choice.
Travelling far from home for some women is often the first time they have left their own State. The decision to travel by airplane and stay far away from their home, can be cause for fear and anguish and some do not even have the support of family and friends. This is because family can’t understand that removing a mesh implant or sometimes even more than one, is not an easy surgery. They don’t understand that the woman wants the best chance at a hopeful recovery. So she will bravely follow the path of hundreds of women before them, with both hope and fear in her heart.
Six and a half years ago I was in such a mess after the implant surgery and was even in more of a mess nine weeks later, when the same doctor took me back into surgery to ‘cut’ the sling in the center. I honestly at that time did not understand what this would do to me and for the next two and a half years I suffered even more until I was at last able to have the implant removed by Dr. Raz at UCLA.
To drive from my home to Los Angeles is about 1600 miles and to fly for my first consult appointment with Dr. Raz took almost all day because we were trying to save money on two tickets, so we made a layover stop each way. It was so hard on me because of the leg pain and other issues I had, so we vowed to find the extra money to fly non-stop when we went back for my removal surgery. My daughter did all she could by selling things on line and after paying for the airfares, we had little left for luxuries like eating out. So with our limited budget we bought groceries from a store near the Tiverton House Hotel and we made it without more money worries. A couple of days after surgery we moved to a cheaper hotel close to the airport because we did not have the funds to stay close to the hospital.
I know that finding the money for these trips is HUGE for most women and every trip I made I looked around at everything around the hospital and tried to write a blog to share where things are, near the hospital and the hotels. I also wrote about how I traveled and things we need when traveling home after surgery. Today I am going to re-share those blogs, because I know every month women across America and from other countries will make the decision to go out to UCLA for the best possible treatment.
There is no guarantee that doing this will give you your former life back. In fact, everything depends on what was done to you in the initial surgery or how long you have endured the implant inside your body. When I made the decision to go to UCLA, I was just like you, except I had spent over two years gaining knowledge by speaking to women over the phone, who had been to just about every doctor around this country. That learning curve gave me a big head’s up and when I told my daughter I wanted to go out to UCLA, she did not hesitate to help me do it.
I know there will be some women who will travel out there alone and will have their surgery alone. If you find yourself in this position, inform your nurse and they will make sure to get you into transport to go to wherever you are staying. Women who travel alone, didn’t feel there was a choice because no one in their lives wanted to help or go with them. So they decided they would make this journey despite the obstacles involved. Believe me I understand, in fact the last surgery I went out there for, the third at UCLA, I did fly alone. At the time, we just could not afford more money for Kim to go with me and she wanted to rebuild my bathroom while I was away, to help me because it was clear I was going to remain disabled.
She didn’t have time to finish my bathroom before I came home because she totaling built a shower with seat for me to sit on. Money was so tight she used a lot of tile we had bought on clearance but it turned out fantastic. The seat was because I was having great difficulty getting used to ototoxicity from the dizziness of the antibiotic drug, gentamicin and I had to lean against the wall to stop from falling over while I showered and washed my hair. It took a long time for me to adjust to non-stop dizziness and there is no cure for this condition and I have had to learn to live with it the best way I can.
It was still a work in progress after I came home as you can see by the tools laying around and took a while before she finished it. To help me with my disabilities, she raised up my existing bathroom cabinet with sink and added more draw space and repainted it from plain white to green, to match the shower.
I had to self-cath for many months after the last surgery, just as I had done after the first implant surgery, so she built the extra draw space to house all the self-cath supplies I preferred to hide. I am extremely fortunate to have not only a very clever daughter, but a wonderful and thoughtful daughter in my life.
She found this wallpaper border for 50 cents a roll and it looks wonderful in my bathroom. She framed four postcards to hang above my closet door, that I had bought in England many years ago and they spelled out LOVE. Many of the beautiful things that decorate my bath and bedrooms, Kim put together as a special surprise for me.
By the time I came home from UCLA I was greeted with a wonderful new remodeled bathroom and a daughter who had missed me so much. I wish every woman have that in their lives when they arrive home after traveling for surgery, but I know not all do.
I have not once regretted making those trips out to UCLA because I feel that even though I am permanently disabled, had I not made this difficult choice, I would now be in a wheelchair without hope. Everything happened to me is because of that first implant surgery and I know the same has happened to many other women. It will be four years in October since my actual mesh removal surgery and it is over three years since my last surgery at UCLA. I can still recall all of them and the time I was out there for tests, surgeries and recoveries and they will be imprinted in my mind forever.
The following blogs I hope will give you the information you need to get you through this difficult time. Each of these blogs have different information to help you.
If someone offer to help you while you are in California, I hope you will appreciate it and say Thank You. http://www.meshangels.com/say-thank-you/
If you want to learn more about Dr. Kim, read this blog. http://www.meshangels.com/dr-kim-ucla/
And of course the amazing Dr. Raz whom I saw October 2015. http://www.meshangels.com/light-of-hope-award/
If your family and friends do not understand why you choose to travel far from home, please share this blog with them and ask them to be open minded and read. I hope every woman’s journey will be safe and her life will improve for the choice she made. With much love to you. Linda