My Fascia Sling Surgery Part Seven
If I did not care so much about women’s issues concerning mesh bladder slings, I could just sit back and concentrate just on me. However, I know there are many women who read what I write and are also on their own journey of removal, recovery and healing. Many are dealing with things far more complex than I am and this is what helps me keep my own struggle in perspective. If I did not know all that they are dealing with, I would probably get lost in deep depression at least for a time. But I do know that many are dealing with life and death situations, or life changing situations far worse than I am.
First of all I read and do research on anything I know is happening to me. Doctors do not have time for this but I want to know whether or not I like the answers I read, because I have to be proactive to ensure I get through this. So lesson number for me one was to understand the bug I am dealing with and learn. Please, please understand that just because this has happened to me, does NOT mean it will happen to you. This will give you a broad view of understanding Pseudomonas.
The second this was to understand the treatments and possible side effects. I cannot believe I have had so many issues with prescription drugs as it is and believe me I fear them. But once again, burying my head in the sand will not help me. So I went to work to learn. I am not going to give you links to all of this because there is no point. I know hundreds of women who have made their way out to UCLA and have never had to deal with this. If you are searching for a reason not to have surgery, well you can find it anywhere on the Internet. It is your decision as to what you do about your sling complications and not mine. It also depends on how desperate you get as the symptoms worsen. I am not anyone’s mother and how you deal with your life is not my business. I write here about my own complications and the choices I make. You must make your own.
Yesterday morning I was up very early after a night of very little sleep. I had to be at the new urologist’s office at eight thirty and right now I drive a thirty five mile round trip to the clinic where my PCP is and he suggested I see this man. I did not have an assigned appointment and I knew it would be a long day of waiting. The night before I would have loved to have watched TV and forget about it all, but I had a job to do. I had to write the facts, from first surgery and doctor, to each consecutive surgery until the last. I also included Dr. Kim’s information and her treatment instructions I received via email. You cannot remember all this when you get there and this is as always a very emotional journey so be prepared and keep every doctor informed.
The new doctor was very nice and he described himself as a country doctor, not affiliated with anyone else and therefore did not have the resources they have at UCLA. He did tell me he was at University of Southern California for twenty years prior to moving to Texas to be around his grandchildren, so he isn’t quite the country bumpkin he expressed. That term is from my English background and described someone who lives in a country area with a hayseed hanging out of his mouth. A little British humor here can never hurt when dealing with continuous hell! He also said he has met Dr. Raz and that he does great work. I did not expect him to have a ton of resources anyway because Brenham is a small town; I just needed someone to administer the treatment Dr. Kim requested and understand it. He told me he would do his best to help me until I see an urologist at a larger establishment in Houston on the 16th of this month. The antibiotic to be used directly into my bladder is a serious approach and he told me about his fears and wrote down things so that I could email and ask Dr. Kim about them. The treatment will not be available until Friday as this man only comes to this clinic twice a week from a fair distance. He gave me another shot as requested and I left feeling overwhelmed and tired. It was three hours later and I found the chairs highly uncomfortable especially with the catheter still in me. I had had enough for the rest of the day and could not find the strength to write and inform Dr. Kim. I needed a good night’s sleep first to tackle that job.
I emailed Dr. Kim with an update this morning about his concerns and now she now has all his information. So now I am in waiting mode to hear back from her as to if I should have yet another shot today. Then I will call my PCP’s office to see about that. This is constant work to keep up with.
It is important that you stay on top of this. Doctors do not communicate with each other because they are busy. You must stay in touch with your original surgeon and as hard as it is, stay to the facts. Pick up business cards whenever you go to a new doctor. Keep one on you at all times and one beside your bed. You cannot remember all this and neither can your doctor. Next week when I go to the new urologist, I will add the information of each doctor and treatment I m following at present. Past treatment do not matter unless they are part of the issue at hand.
As you know by now anything to do with the law and your case or mine is never up for discussion here. This is a health informative blog so that mesh injured women have a place to begin the long process of navigation to begin to live again. But I am going to tell you that you need to report every ER visit and continuing treatments and complications to the powers that be. Mesh complications are expensive and ongoing. Getting the mesh out is good but it is not a quick fix. Often other issues occur over a long period such as reconstruction to fix these problems and you must do the work yourself to inform. That is all I will say on this matter and please do not run with it and leave comments about your case. I will have to delete them. I am determined that this blog will be a place that is safe for women to come and learn and it will remain that way.
One thing pleasant that I have to write about before I end this blog. When you are dealing with all this you must find small pleasures that surround you. When I dressed to go to the doctor yesterday morning, I donned my full black skirt to hide the catheter. I am sick of wearing this skirt but it hides a multitude of issues. I was about to leave my closet when I spotted a beautiful and colorful scarf that was hanging there. I received this scarf from a lovely mesh injured lady who lives in Wales. You should know by now that I am in touch with women all over the world and many are fighting to reveal how serious mesh complications are in their own countries. I am a natural redhead and even now my hair is red without any help. She has given me the endearment of the name Poppy because she said that my hair reminds her of that color. Last Christmas I received a surprise gift in the mail. It was this scarf with has my hair color as well as other colors. I reached for the scarf thinking “If Jemima can do this, so can I”. This lady has had ten surgeries in eleven years and is still living in hell. What I love about her is her spirit. She may be in pain but she fights to live the best life she can have, every single day. She has a fun loving and infectious spirit that somehow holds other women together at their time of need.
I wrapped the scarf around my neck and felt her spirit all around me. It was like a big warm hug. When I got to the doctor’s office the temperature seemed fine. I live in Texas and right now it is warm outside but after sitting awhile I began to feel cold. When I moved into the examining room it was a lot cooler from air-conditioning. The warm scarf felt so good as I pulled it around my uncovered arms. Once again I thought of her. If it were not for the support of many women around the world just like her, I am not sure what state I would be in. We are women helping women get through this.
Mesh is a continuing journey and is difficult to deal with and I am grateful I am not alone in this……………..