Four years ago today I was counting down the days to my mesh removal surgery and I was both so happy it was drawing closer because it had been such a long wait, but I was also very scared and apprehensive. What was strange was, I actually posted the following on my craft blog, so you can tell what it was doing to my mind. Later when I found it, I deleted it, so it never got posted on this blog. This morning a reminder came through in my past Facebook memories, so I began searching for the blog I wrote. I am a very prolific writer so I have many, many files and although my daughter has helped by setting things up where I can now keep track, four years ago, I was writing in various areas of my computers. I finally found it in my One Note files and decided to post it now for all the women who are having surgeries in the near future.
I do have another blog about something very important that I will post in a few days, but when I read this, I thought it may help a few women with their anxiety.
The date was September 18th 2012 and I was due to have removal surgery at UCLA by Dr. Raz on October 11th. I am surprised I was able to write much at all in those days, because I was so sleep deprived because of pain in my leg, hip, groin and buttocks. But somehow I did. Now you can read what I wrote four years ago.
A few women have shared with me how hard the month before surgery waiting time is and I want to share my own feelings with you so that you understand what you feel and think about it is normal for all of us. I now have three weeks to go.
One woman told me that her anger went up and down because once again she was going to have yet another surgery. Although she was living with pain, it had become the ‘known’ quality of her life for a long time. She had already underwent a partial removal by a different doctor, which did nothing but gave her pain and more anger, so as her daily countdown before having mesh removal by Dr. Raz, her life was all about her anger. She was afraid that having surgery once again would leave her in pain and full of lost hopes. Now I can give you her outcome. Her life has changed for the better. Not perfect nor will it ever be again. Mesh removal will always leave us with some problems and possibly nerve damage, but keeping it in us, will create more and our lives will be lost. She told me that the first two weeks were the worse and then slowly she began to experience a better life. She finished by saying to me, give yourself time to heal. Therefore, I pass this message on to you.
Another woman shared with me her uncontrollable fear. She had been through more than one partial removal and was afraid she could not be saved. Her life had been a misery for so long, mostly bedridden while the rest of the world passed her by. Living on pain killers dulled her pain for a short while after taking them, but it never lasted for long. Therefore, her life ebbed away without any hope. Then she found my blog. Her removal was more difficult because mesh had been layered in several places. But she said Dr. Raz was her last hope. She put her trust in him and underwent a surgery that took longer than most because of her long term complications and multi mesh. She stayed in I.C.U a few days for recovery and fortunately had a family member in California when she spent a few weeks recuperating, before she flew home. Her extreme agonizing pain was gone. She began slowly forming a new life where she could live without pain killers and resume tasks that were not too arduous. It will take her a long time to heal but she now has hope.
Dr. Raz at UCLA has saved a few women that even I was not sure was possible. No, not he nor UCLA do not pay me to say any of this. The women had been given up on. Doctors did not care about their debilitating condition and there was no hope for a future. I am sure this quiet man would not consider himself an angel of hope but to many women he is.
One month before you fly or travel for surgery at UCLA you will have to get your own doctor to run a few tests to make sure you are well enough for surgery. Don’t panic. Unless there is terrible fear that you will have a heart attack and die during surgery, Dr. Raz has informed many doctors that he will take great care of their patients during surgery, even though many of their tests were somewhat of concern to their doctors. This is because he has seen some of the worse cases ever and knows it is these women’s last hope of living, let alone a better life.
Be aware that you may not be able to concentrate on anything big. This has been happening to me. My mind wanders. I worry about falling and screwing up my surgery date and not be able to go through with it, then waiting for months to get back in line. Let alone losing the money for flying out there. This is because I have nerve issues in my right side and in October 2010, six months after I had the sling put in me, I fell. The nerve in my leg kept giving way at the oddest of times with a sharp pain. I cracked two wrist bones and spent weeks in a cast. Then I realized I had to do something to stay safe, so I bought a walking stick. Good thing I did because there are times I need it just to get up from a chair. There have been times when I resorted to a walker because of the state I am in and I have done all I can to stay safe for removal surgery and I have not taken any chances so that I have to cancel it.
Logically in my mind I know worrying is pointless and stupid, but it is also human nature. So I switch. I try to do something creative. Or watch a funny movie. Anything to stop the worry and switch my brain to something easy on my mind. To give you an idea of the silliness of my worries. When I noticed a call had come in from the doctor who did my tests, but there was no message, I panicked. I had gone to lay down because of groin pain today and had missed it. I knew this doctor had told me by blood pressure was good and I was in remarkable health for all I had and still am going through, so I should not have worried about this call, but I did. I later found out it was a call to ensure I was satisfied with the service I had received. Then I felt relieved but really silly.
So don’t worry if you go through enormous highs and lows both before and after surgery. Don’t worry if it is crying fits. Understand that you are normal in your fears and your anger. I hope by choosing the right surgeon my life will eventually get better. I also hope the future will be better for you and for me.
Four years later I have learned so much. Some women like me will never be able to walk again without using a walking stick. It is all about the damage caused at the original implant surgery on October 11th this year I will share with you what my removal surgery operative report said so that you understand.
Do I still have angry times? Yes of course I do. I went from a healthy individual to being permanently disabled, so I would not be human if at times I did not feel anger. But I chase away that anger by continuing to help women and raising awareness of the things that can happen because of a simple bladder sling surgery.
Am I fearful or sad at times? Of course I am. Fearful because I do not want to be a burden on my daughter than I already am, so I take care of myself the best I possibly can. I don’t take prescription drugs because of all the side effects and I still take many supplements daily. When it comes to sadness I do at times feel very down because I am so limited in the things I can do. Not being able to drive even for a few miles, is huge. Not being able to help my daughter by clearing up things when she is doing so much work here to keep things going around our home. Those things make me feel very sad, but I have to shake the sadness off and find ways to keep going and be happy. That is my message today to every woman.
If you smile, you will see the smiles on other people’s faces and you will feel better. If you work on getting the mesh removed, others may help you because they see your actions. Don’t pretend everything is fine and you are doing well, but don’t spend all your time moaning and complaining either. People tend to run the other direction if you do nothing but dwell in your own misery.
Don’t be afraid to ask for help of those who say they love you. You may not get it right away, but in time, maybe they will see that you are not ‘putting it on’ and they will step up and give you much needed support.
IN the meantime, do what I did. Take it one day at a time and keep moving forward no matter what it takes. Don’t listen to the naysayers. Try to surround yourself with music, art or anything that will give you peace during this time. Find a way to get through this with as little stress as possible and keep smiling. With love. Linda