My Fascia Sling Surgery Part Eleven
I have no clue why I have to learn all this by experiencing it, but all I can think of, is it is to help other women so that they do not have to go through what I have been through. But I can tell you this much. The key to me getting well relies on two things. First I have a great daughter who dropped everything to get me to the ER yesterday. Second I have to keep fighting for the best medical treatment possible and listen to my body. No one can do this for me, not even my daughter. I have to believe in the signals my body is handing me. I have to take action according to those signals and not wave them aside. You must be as diligent as I am and take something from the lessons I learned so that you will not go through this much pain. Then my lessons I learned from my pain will be worth it. Everything you read about mesh complications here will give you power. That is why I keep writing this blog.
What happened to me that caused me so much pain and agony? A FAULTY CATHETER! Like everything in life, some can be faulty only none of us know it. So I am going to give you a rundown on the symptoms I had and why these could be important to you.
For the past couple of weeks, I have had difficulty walking at times because of so much pain in my pelvic area. I knew it was bladder related and assumed the increased agony was because the infection had not been cured. I can tell you this much. All this stemmed from the beginning when the infection pseudomonas was diagnosed when I first removed the catheter two weeks after the fascia surgery. Or I should say 2 weeks, 5 days, because the culture did not get to UCLA soon enough. That was the first error because the lab sent the urine test, not the culture results to UCLA. My fault although I did not realize they would send one without the other. So make sure you ask that the culture be sent to your surgeon because the urine test is not important. At the very beginning, Dr. Kim recommended a plan of action. I was wary because of my drug reactions of the past and the amount of antibiotics she said I would need to rid my body of this bug. However, I believe now she definitely knows what she is talking about. This is a super bug and cannot be messed with. I also know that the UCLA urologists deal with things that no other doctors see around this country, especially when it comes to mesh complications. If doctors, who treat us when we are home, would listen to them, they would get it and learn much more themselves. However most do not want to do anything but the basics, so that we cannot report them and say they refused us help.
I was taken in by yet another doctor whom I thought had my best interests at heart. The first urologist I saw in my local area. When I asked for help so that I could do the gentomicin treatment at home, he gave me a list of reasons why he thought all this stuff was too much. He put fear in me and I allowed it. You see I have good reasons. I am very much afraid of prescription drugs and this fear has been well earned. But there could be other reasons why he did not help me get the proper treatment from the beginning. I can’t prove it nor know this for sure, but I know something he actually told me and I learned from the pharmacy when trying to track down a source for gentomicin. They have to buy in bulk to get it wholesale and they don’t want to because they normally do not use it. It is only for special cases or when someone like me cannot take other antibiotics. They normally prescribe common antibiotics. So how would this urologist make money from Medicare if he could only buy it from the local hospital, which he did by the way? Get me to go to him for only 2 treatments when it was convenient for him to come to this area. And yes I believe that is exactly what happened.
My PCP at that time suggested I go to this man because he was in the same building (clinic) when he came to treat other patients. When I first met him he gave me a load of bunk about being a country doctor who would do his best to help me. I now believe none of that was true. Can’t prove it of course but I have other reasons to feel this way. He never once examined me. He never actually laid a hand on me other than to inject the medicine into the catheter to go into my bladder. Oh yeah, that was not laying a hand on me by the way. He did not look me in the eye when I made statements about mesh complications and all the women who are injured. And worse yet, on the final day I saw him, there were only two women in the waiting room and they, I found out are mother and daughter. I make my own skirts because they are fun and are cooler to wear in the Texas heat. They are long and are ruffled and layered. I was wearing one I had made out of Disney Fairies cotton fabric skirts I made a couple of years ago. One of the ladies (the daughter) told me she liked my skirt and I replied how cool they felt and because there was no one else in the waiting room, I said it also covered my catheter. The mother looked at me and said she had one too and she could use a skirt like it to stay cool and hide hers. .
My ears perked up. Could this woman be another victim of mesh? So I told them I was one of the mesh women they may have heard about. They looked shocked and said the mother was too. The daughter said this urologist (yes the one we were there to see) had put a mesh sling in her mother a one year before and had done nothing to help her mother. I would say I was shocked, but after doing this for so long, nothing shocks me any more, so I had to work quickly. I asked if the daughter had any paper and I wrote down the name of this blog. I barely got started when a nurse who was standing not too far away, called my name and ushered me into an examining room. I wished so much I had written down my phone number but I hadn’t. I was quickly ushered into a room and then I sat there between 20 and 30 minutes on my own. Was I moved out of reach of this woman? I can’t know for sure but I suspected it. Of course when I came out of there they were gone.
So back to yesterday and my visit to the ER. My home health nurses came every day since last Thursday and the last one began teaching my daughter how to do the treatment on Saturday. On Sunday she came again and watched how she did it on her own and gave her an A plus. She was to take over my treatments. I had told all three nurses that I had quite a lot of pain when I walked. I reiterated this again on Sunday and the nurse said that if it continued, I should go to the ER and ask them to change the catheter. They try to help people so that they do not go to the ER, but sometimes there is no choice. By later in the afternoon the pain was worse. With Dr. Kim away from the office, I had emailed Dr. Raz on Saturday. He thought if this continued, I should be admitted to hospital, have IV antibiotics and be watched. But I knew that would take a lot of doing without a urologist taking charged. So when the pain increased Sunday night and it got so bad I reached for one of the pain medications I was given at UCLA in case I needed them after surgery, I knew the pain had to subside so I could get some sleep. I never felt like I was in extreme danger or I would have woken my daughter and got her to take me right there and then.
I managed to sleep five hours that night, and then when I woke up I wrote to Dr. Raz and Dr. Kim and told them what I was going to do. I told them what I was experiencing and wondered if it could be a reaction to gentomicin? I also took my treatments and an overview of my mesh case along with my drug allergies and printed it out to take to the ER. The antibiotics I had been taking did not come in a bottle and I had kept a diary of what was done and the dates. When my daughter was up, she saw the pain med bottle and knew it was time to go to the ER. We had talked about it the night before, so she got ready first thing.
There is a small hospital only fifteen miles away from us and the other three times I have been there, all because of my mesh injury, they have been wonderful. Last and this time when I walked in I told them I needed help and I could not sit down. I was in far too much pain to sit and I needed to lay/sit. They took me back to a room while my daughter gave them my information. I handed the nurse my outline information about my case ant treatments and she took my vital signs. Then my daughter came in and we waited for the ER doctor.
Even though it was early, it was getting busier because it was Memorial Day and many people go to the lakes nearby. A lot of accidents happen. But the doctor was not long and he came in to go over the things he needed to ask. He was extremely nice and told me he had read it all. He asked what they could do for me. I told him that I felt the pain may be due to the catheter being in almost four weeks and I showed him that the usually clear pipe line had a film of white in it. He told me when I saw the urologist to tell him about that and it could be the gentomicin but maybe not. It did not happen during the first two treatments however. I also said that I needed to have pain meds to change it because I could not even touch my pelvic area for pain. Then I asked if he would make sure a culture was done. He agreed and set the ball rolling. I felt sheer relief.
It is highly rare for me to take any form of pain medicine. So the pain medication worked quickly and twenty minutes later they did what was needed doing. Then they put a warm blanket over me to rest and wait to see how I felt. My daughter left to pick up groceries while I rested, so that when we left we could head straight home. Believe me I needed the couple of hours before I could get up and walk because the medication zonked me out.
We got home around one thirty pm and I ate a small meal, drank a lot of water and went to sleep. I was out like a light until five pm. I never go to sleep during the day, but the medication and lack of sleep had taken hold. I forced myself to get up and walk after I awoke and I still felt relief in my bladder. No more terrible pain. I was not sure if it was the medication still but I was so relieved. My daughter asked me what I wanted to do about the gentomicin? I told her I wanted to continue with the treatment to try to clear this infection because I really believed by then that the cathter had been at fault. She did it for me and then I actually lay on the couch in the living room for a couple of hours again. I couldn’t stand anywhere but the bed for a few days, due to bladder pain. I was amazed.
I slept well last night, the first time in a couple of weeks. When I awoke this morning I could still walk without pain. I wanted to yell for joy.
If you wonder why I suspected it was the catheter, well it is because I have very smart mesh friends who have medical degrees. I had confided in one who is a nurse practitioner that I had had the pain and spasms and when I did have a spasm I began to leak around it outside of my body. She said that it was possible over a period of time that the bulb could deflate a little and this could happen. At first I was able to push it gently back up again, but then I could not move it and it was agony to try. I believe it deflated enough to get stuck in my urethra and that is why I had so much pain. It did not deflate enough to come out. Sad to say a mesh injured nurse knows all about catheters and how they feel in a very personal way.
You can read guidelines about the use of catheters here, but always ask for help when it comes to this. http://m.nursingtimes.net/200109.article
So now I have a new catheter and I feel better. I will know the culture results in the morning and I will make sure that UCLA gets it. I will be at the new urologist office on Thursday morning as planned and all I can do is hope this new one is a compassionate man. Surely third time will be a charm and I won’t sit here wondering what to do. If he isn’t I have no choice but to set up to go out to UCLA and get the help I need. All I can do now is wait and see.
My journey has been far too long with too many learning curves. I can tell you this much. I knew in my heart the catheter was the probable cause. I should have gone with my gut and believed in myself. We know our own bodies. My journey continues………
Update. Dr. Kim is back in the office and she called me awhile ago. She wants them to try to remove the catheter on Thursday and see how well I will do. She will await the results of the culture and everything hinges on Thursday this week.