My Fascia Sling Surgery Part Thirteen
I would never have believed I would be writing so many parts to this surgery, considering I sailed through mesh removal last October. But that is the nature of very serious infections and doctors who would not do the right thing to help me to begin with. However, I am not going to say all doctors are like this because my new female PCP has turned out to be a wonderful gem. If not for her, her nurses, the nurse practitioner whom I first contacted and my wonderful home health care nurses, I may not be able to write any of this because I am sure I would be feeling VERY down.
I have learned so many things because of what I have gone through, some bad some good and I keep sharing with you because I am sure many of you would be totally stomped by the same situation I am in. So like my daughter said to me today when we left the ER (yes I was there again) maybe I have to go through this because I am a strong enough person who will keep fighting and help you fight for your future. Perhaps she is right.
As you know if you have followed my journey as of late, I have had a pretty up and down week. It has ended on a much stronger note, but of course pitfalls happen. Fortunately I can handle the latest pitfall because I know there are others who are fighting to help me as much as I fight for myself.
The last post I wrote was less than two days before this, but thankfully as low as I got, someone began to catch me before I hit the ground. It was actually a combination of people. Dr. Kim at UCLA, my PCP and many nurses.
After the catheter was removed by the urologist on Thursday I was sent home by the last urologist with 3 single self catheters, no instructions and no follow up with this doctor. I could not believe it and it took awhile for it to sink in. I knew I had to something but I was overtired and could not think. I wondered if I would be able to urinate and I was totally stressed out about it for a couple of reasons. One was only having 3 self caths to work with and I knew my now smaller bladder only held 280 cc. Much less than a normal bladder would. Therefore if I used the caths up too soon, I had to go back to the ER. (Emergency room) So I did not want to drink an over abundance of fluid and run out before the day was out. We got home here soon after noon time and I was afraid of the results. The second part of my anxiety was because if my bladder overfilled I would have those terrible and painful spasms that only IV pain medication can stop, until the ER gets me catheterized once again. I was very fearful.
I am very fortunate to have surrounded myself with wonderful women who understand mesh complications because they have been through this. So knowing how I was feeling I received a phone call from one of them who was a nurse practitioner before she was injured but now she cannot work anymore due to her injuries. She knew how I was feeling and she wanted me to be able to talk to someone about it. I am forever indebted to these wonderful women who have not only helped hundreds of women but me too. So after her call I felt calmer.
I had been in and out of the bathroom at least every hour with the feeling that I needed to go. But when I did I did a few dribbles at first but did manage to get up to 100 cc’s at one time. I measured and kept records. I knew how important it is to do this, because of the months of horror I went through after the sling was put into me. This time it was not easy because I was not given a ‘hat’ for the toilet to catch it. So if you have any issues like this ask for one because it will make keeping records a lot easier. I had one the first time I went through this but about a year ago I thought I was done with it and I never wanted to set eyes on anything that reminded me of that time, so I threw it away in plastics recycling. This particular night I so wished I had it however that should have been part of the urologist’s job to set me up with everything. He gave me absolutely nothing but the three self caths.
I had hoped the amount of urine would increase after time, but instead it decreased and I knew that was not right. So eight hours after the catheter had been removed I knew I had to self cath.
We had stopped to pick up the iodine for prepping on the way home and I scrambled around looking for containers and the mirror I used over three years ago to be able to see what I was doing. Without any guidance from the urologist, I had to go by recollection from the past. These self caths were entirely different than the ones I had used back then, so earlier that day I Googled how they worked. They actually are far better because they are self lubricating. Of course Googling was helpful o understand them but also made me feel so sad. A YouTube video showed a young girl in a wheelchair, popping the packet to release the lubrication, with a big smile on her face. No graphics of course, but I really felt down after this and had to leave it alone for a bit. I felt not just sadness but far too much anger and I knew it would only add to my anxiety. Had I not been through this all that time ago, I would have been scared to death of doing self cath the wrong thing and I think about the fact that the urologist should be ashamed of himself for not helping and how many other women have gone through this because of his lack of compassion. That in itself made me angry at this urologist because he took money from my insurances for my 15 minutes of nothing.
Anyway at seven in the evening I had collected and measured the amount I removed which was only 100cc. I had tried to go before doing it so I definitely have retention however I had not drank as much fluid as I normally would have done. Is it because of how bad this infection is or is it because I will have retention now forever, I wondered? I cannot answer that question now until the infection is completely under control. I of course emailed Dr. Kim and Dr. Raz the results and asked how often I was supposed to cath and I had a problem because I only had three, so was it okay to wash and reuse them until I had more. Dr. Raz came back that I could wash them with soapy water and re-use them if I had to. I just felt so down and alone, hence little sleep that night and the blog I wrote Part Twelve.
I had a terrible night with little sleep and at 7.30 am on Friday morning Dr Kim called me. It was 5.30 am in California and she was just getting up to go to begin day of surgery and she saw my email. She reminded me I needed a urologist, but it is hard to explain that needing one and getting one who will do the job are two different things. She said she understood because women across the country had the same problem. But I resolved to get back on the phone and find yet another if I could.
When I set to work and made some calls. First was to the hospital lab that had the culture results and without them no new treatment could begin. I asked them to please fax them to Dr. Kim and to my PCP and they said they would. After I had some breakfast I called my PCP’s nurse and told her the situation and she said they had the results and the doctor was going to view them and set up a plan of treatment. I also called the home health nurse because she had planned on coming by to put the catheter back in until I had the infection under control because I had no way to remove the urine I now retained. Then I began the hunt in Google for a urologist and instead of Houston I decided to try north of here in the Bryan College Station area. My daughter also was busy doing the same.
I found a female and made a call. I was immediately told I needed a referral from my PCP. I have the type of insurance where I can go to any doctor without referral, so I was baffled. Ladies, I am going to tell you now that if you have this type of insurance and you wonder why you have to go through a PCP, I have figured it out. It is to weed us out! Yes, Friday was a day full of lessons. I did call my PCP back and she said it was not going to be a problem. They did make a call and I am sure they were asked details and they never got a call back at all. In the meantime my daughter found another one for me to call.
I had a lot of time to think about this and knew with the uncomfortable catheter still in me, and the infection causing me so much discomfort, I did not want another long ride in the car if I was going to be booted out of the door in fifteen minutes without any help. So I called and I asked the receptionist if they took patients with mesh complications. She thought it would not be any problem, but she would ask the doctors nurse and call me back. Truthfully I did not expect a call back at all. However later in the afternoon the nurse called me and told me the truth. Even though I had had it removed, they did not take patients with mesh complications because we are a liability. So there it is! I was grateful for the truth and yet the truth shocked me.
Urologists, urogyns, and obstetricians all put mesh in women every day, they don’t know how to remove it and they don’t help us either when the complications begin. We are taboo and yet they do this to us to begin with! This is an outrage in a country that is supposed to have the best medical health care in the world. They would rather let us die than treat us! If you are a woman who is going to have a hysterectomy or prolapsed repaired, be for warned. This is what you are dealing with because they will put mesh into you when they do your surgery. Fly out to UCLA and get the surgery without mesh to begin with.
I just heard from one woman who saved her sister because of her own mesh complications. She found my blog and they went together out to UCLA and saw Dr. Raz. She will now have removal in October and her sister will have a non mesh repair surgery on the same day. One sister saved another because of her own mesh injuries. That is women helping women.
The good news is on Friday all day it was women in the healthcare profession who were fighting behind the scenes to set up my treatment. Dr. Kim made a plan of action that I must have IV antibiotics and it was going to be gentomicin because of my past drug reactions. There is not a lot of choice for me. My PCP began setting up Home Health Care to do it for me at home. It was going to be done over ten days. However, it could not start until next day and they were going to call me Saturday morning. My home health care nurse came and out and the catheter was put back in me so I did not wind up back in the ER with retention and bladder spasms. You cannot play around with this if you can’t go. I at last began to relax and knew then I would be able to sleep. My daughter had worried all day and waited for me to decide if we had to go to the ER and she could not do anything normal because she had to stand by.
I finally caught up with sleep that night and received some information from another mesh woman who thought it may be of help with my current situation. I began doing research Saturday morning then everything stopped.
I was waiting for a call from the PCP’s nurse with how the IV treatments would go down. I got a call at 10.30 am and she said everything was going to be done at home, but the first treatment would have to be done in the ER in case I had a major issue with this drug. They asked if I could please go immediately and I said yes. My daughter set aside her plans for the day and we went. When we got there they knew what to do as the PCP had enlightened them. So I went into a room and lay on the gurney and waited.
We all know anything in an ER can take time. So I was patiently laying there and tried to read for a bit. My daughter had dropped me off and had gone to buy groceries we needed and other things so that when I was done I could come straight home. She was also going to go by to pick up the IV solution from the pharmacy which was ordered under my insurances, ready for home health. She ran into a problem. The pharmacist could not get it until Monday morning. I had been given the name and phone number of the home health care nurse who would be doing the IV treatments and instructions to call her immediately when the IV began. Apparently the treatment had to be done the same time every day. I carried her number in my purse so I called her and asked what I was supposed to do if the medication was not going to be there for the next day. That sent her scrambling to get in touch with my PCP.
The ER nurse was about to put the IV port into my hand but she of course had to stop until we knew want was going to happen. An ER doctor came in and we went over why this procedure was on hold. Then we waited. In the end, it was cancelled because unless the drug was on hand to continue, it was not wise to begin. I came home.
I was told to call my PCP and let her know why it was not going to begin until Monday. I did and she called me back. It was quite unfortunate and she was a bit ticked off about not being able to get this all going right then, but she understood it was impossible. There was nothing any of us could do. The world spins seven days a week, but commerce doesn’t. It only works for five of them.
It is now Sunday morning and I am trying to finish this blog. I will be in the ER early tomorrow morning to get the treatment underway that will hopefully stop this superbug in its tracks. There is a reason why it has to begin early in the day. My PCP explained that the home health nurse has to take a blood sample within 6 to 8 hours of the first dose of this antibiotic to check the levels. I don’t understand all this but I will call my home health nurse later today and ask. Right now my electricity is off because of a storm so I am typing this on battery power but it won’t be posted until the lights come back on. The world also runs on electricity.
Before I leave today and post this I want to tell you something. One woman told me she was afraid to go out to UCLA because she was worried about finding someone to care for her on her home front after surgery. I understand. I am not going to make decisions or convince anyone what they should do but I will tell you how I feel. I was left with no help for two years and seven months on my home front. I lived in agony and it worsened every day. So I made a choice to go where someone would help me regardless of the consequences. I could have stayed here and eventually succumb to death after many years of agony, or I could fly across the country and put myself in the hands of people who would help me. I did the latter.
No this is not easy now, but I look at it this way. At least the terrible destructing mesh is out of me. I can deal with everything else as and when I can. I now have a good PCP who told me on the phone she is willing to help me even though the hard part was up to me. She is young, bright and willing to learn with me and help me. What more can I ask. She said she knows I need a good urologist but she knew it was not going to be easy. I told her how I felt. It I can get this infection under control first, I will fly out for a follow up with Dr. Kim and let her do the tests I need. It is the only way I can guarantee these tests will be done correctly because if I try to force it done by a doctor who does not want me as a patient, I will have to go out there anyway. Why waste my time and my insurance money.
My journey will continue……….