First Test Down at UCLA
It is only ten in the morning here and I feel exhausted. My poor room mate has suffered endlessly over several years and her agony is heart felt. Last night she was in so much pain she did not sleep at all and I am grateful that right now she is having surgery by Dr. Raz. She deserves to have some relief to her pain.
As I listened to her terrible moans of agony during the night, I thought it was high time that manufacturers of mesh and doctors who still believe it does not harm us, be forced to see and hear what I see and hear. All I can say is, it is the cry of utter torture being delivered to a woman’s body, that is relentless. It makes me very sad and very angry that any woman be subjected to this and her voice is not being heard. Now I await news that her surgery is over and she okay…………
Yesterday was a hard on me because I had another urodynamics test scheduled at UCLA. This was the third time I have done this so I understood what would happen. However, it was the first time I had to contend with the ‘boat on rough seas’ issue that goes on in my head and eyes, both night and day.
I took the shuttle from the Tiverton because although it was a beautiful day, there is no way I can walk outside in sunlight and make my way to the building. Bright light and well as dark make it more difficult for me to navigate when walking. I cannot risk swaying too much and falling because the last thing I need to add to my life is a broken bone. So I take no chances.
The fact that UCLA offers a free shuttle service to the hospital or other buildings is amazing. I did think to ask a few questions when riding, such as if it runs on weekends. It does not. I had hoped it did because not only is my room mate having surgery today, but another women I have been in touch with over a long time, is also having removal in the hospital. I had hoped to visit both tomorrow just to let them know how much I care, but without the shuttle it is impossible.
During the week it runs long hours, beginning at 4.30 in the morning until 6.30 in the evening. If you cannot walk the morning of your surgery and you have a 7 am time slot, you have to be there around 6 am. You can go to the front desk and they will call the shuttle to come and pick you up. This will save you a taxi fare. Give around 20 minutes for them to arrive. It will take you to the hospital if you are being hospitalized for surgery, or the Ronald Regan building if you are going to be there for day surgery. Be sure to give the front desk a call the night before and ask for a wake up call in your room. No need to fear an alarm not going off and missing your time slot.
Like I said I used
the shuttle to go to and from the Ronald Regan building to have my urodynamics test done yesterday. Diane the nurse who does this test is always kind and very efficient. I did ask her how many of these tests she did in a day and the answer was seven. Because I have not been able to urinate since my last surgery, Dr. Kim gave some additional instructions of pictures she wanted taken of my bladder when in action. I was happy to watch the screen and saw my bladder definitely was full and nothing I did could make the urine flow happen. What des this mean? I won’t know until I see the doctor on Monday and have the cystoscopy test done and see what she says. Surgery is set for Tuesday, so then I will know what she proposes to do to help me.
The trip to the Ronald Regan building tired me out because after awhile of trying to walk with constant movement where my eyes and brain do not work together, all I want to do is close my eyes for awhile and rest them. I find walking through corridors is very hard. Here at the hotel it is not too bad so long as I do not stare straight ahead. I look straight down while walking to avoid finding myself veering from side to side, which results in extreme dizziness. But the Ronald Regan building with its shiny floor tiles was much harder because of light that bounced back at my eyes. So I took extreme precautions to move slowly and stopped many times so that I did not find myself veering too far, one side or the other. It is a big learning curve to maneuver around with safety in mind.
Just as I waited for a bus to arrive I received a phone call from a woman who was back for her post op visit with Dr. Rodriguez. She wanted to meet me so I told her I would be at the Tiverton lobby within a short while. It was not that long ago that she found my blog after three years of agony and hell since her sling was installed. It had only been five weeks since it had been removed and I was anxious to visit with her and see how things went.
She told me over the phone that my blog had saved her life. Like many women she had such difficulty trying to get to her job and she had missed many days of work when she could not make it. She had a disabled parking permit which helped, but she was finding herself at a point of no return and she wondered how on earth she would get through until her surgery and keep her job to pay her bills and medical insurance.
When I met her she told me she remembered me writing that if you have to get through minute by minute, hour by hour, day by day or month by month, do what ever it takes because the reward will be worth it. She did. By the time she made it to surgery she was in a wheelchair because the pain in her right leg was so immense when she tried to stand on it. You should also know at this point that her sling was the same type as mine and a TVT sling, not a TVT-O sling. This is important because doctors do not believe the leg pain happens with TVT. It definitely does!
Her two sons came with her when she had the surgery and she said they were her amazing strength. She had always been there for them and now it was their time to be there for their very sick mother. They passed with flying colors and are a tribute to her as a single mother raising two boys.
We met in the lobby, sat down on a couch and began talking and instantly felt comfortable with each other. She has a personality that shines along great determination. Her laugher was infectious and her spirit strong. AND she now walks without any help of a wheelchair or walking cane. Yes her nerve damage in her right leg continues but it is mild in comparison with how it had been for a long time. Even pain meds did not ease it at that time. Now she has reduced pain meds as needed and hopes one day she will be able to discontinue using them. She is adjusting to her new life and learning that she must do things in moderation. But she is thrilled to walk again.
You know the spiritual tent shows, where they have people get up and walk out of wheelchairs? Well that is what the urologists of UCLA are doing for us. When I saw her I wanted to shout with joy because one more woman has her life back. Not perfect, but with time, maybe the nerve pain will be manageable so that now she can do things she never thought possible. This is my wish for every mesh injured woman. To smile the brightest smile of this woman because she feels great joy again.
She told me that this experienced had changed her life in more ways than one. Things she thought were important before her mesh injuries, no longer were. She has decided to make changes in her life and do something that makes her happy. Her boys are grown and she as an artist wants to feel there is more to life that a job she no longer enjoys just to pay bills. I know she will find whatever it is that will make her happy AND pay the bills and I wish her well. I can see it in her eyes that she is one determined woman who will do whatever it takes, the same as she did to get out to UCLA and have the mesh removed.
Five weeks since surgery is not long to be doing so well, but I am thrilled for her. A great deal depends on attitude, taking supplements to keep your health and getting the mesh out as quickly as possible. She did all of the latter and now she is being rewarded. Another great joy for her is that the day it was removed her brain fog left. Like many women it made life a huge struggle.
I hope many women will read this and find a new determination to get out to UCLA and find a better life. To see this woman yesterday was the greatest birthday gift I could ever receive. Her joy is my joy and I celebrate every woman’s life that has been saved by having a terrible product removed from their body. It gives me great hope…………..