My Fascia Sling Surgery Part Seventeen

I have to yell out to the world “I just love my new personal care physician”. It is the hardest thing for any mesh woman to find a doctor who will help, let alone someone who cares, so I feel very lucky right now. I hope that having a doctor on my side will make this journey easier for me in the long run because I keep battling so many issues and often feel very overwhelmed.

Yesterday afternoon I saw her for a follow up from being released from the hospital a week ago and I had the EKG done ready for surgery at UCLA. It was the only test needed because it was only eight weeks ago since I had the fascia surgery. I wrote down everything in my plans for going to UCLA, because for the life of me, remembering what I need to say when I see a doctor is hard. So I do it before I go, hand it to her nurse and ask that she reads it first. It works better for me and I keep all the facts straight and she has something for her files that will tell her that I am not here in Texas during that time. I also asked that she allow home health to come the day before I leave to put the catheter back in so that I can travel and go to appointments out there instead of worrying about my three hour clock.

When she came into the room and sat down she said she had read it all and then said “Now let’s see what we can do to help you”. Those words in a doctor’s office in my area are foreign to me. Not only that but I know she means it. So she went over the things I had written about and then told me that she had read up and the standard treatment for my infection was ten to fourteen days of IV gentomycin. She said because of my situation, she really wanted me to do it for the fourteen. I agreed. I did tell her that to combat the effects of so much IV antibiotics, I had not found any answer as to how much probiotics to take. However because I am taking eight times more antibiotic than normally would be given, I had decided to take eight times the probiotics. She laughed and said it sounds like a plan. She did not know how much I should take either, so if is working, keep doing it.

Last night I received a call from another woman who had mesh removal in March and although she does not have my infection she has not been able to get rid of the deep tissue infection that had invaded her body before the mesh was removed. Dr. Raz told her he will make sure that she gets well and is doing all he can to treat her. So yesterday she too had a PICC IV line put in and today was going to start the same treatment that I am on. Gentomycin for fourteen days. Of course she had the same reaction I did when reading the side effects that could happen and it scared her when a paper to sign was handed to her, for them to do the treatment. So by calling me she was able to hear my voice and know I am okay ten days after beginning the treatment. I also explained to her how they have to handle the blood tests and why. Twelve hours after the first treatment it is imperative that they check both the gentomycin levels and her kidney function. They did this to me and they found out I had too much of the drug left in my system, so they waited twelve hours before giving me a newly adjusted dose. My kidney function was fine. They must do these tests every 24 hours for a few days until they are sure she has the right dosage for her body. She told me how relieved she felt because I had gone through it first and had written about it. So yes the effort I make explaining all details, I do know helps other women deal with their own continuous trauma of mesh complications. That makes writing this worthwhile.

So we will stay in touch and she will continue to read my blog and know I am making it past all these treatments. The good news is she has no incontinence to deal with and no self cath to do. I am very happy for her because this is such an added burden.

My doctor agreed with everything I had written down and we now have a plan to work on. The home health nurse was here early this morning to take blood again to check all levels and to pick up my urine sample which I self cathed as soon as I heard from her. The window from me to the lab is two hours to get a proper culture test, so I took immediate action once she called. Once she left here she went straight to the lab and was placing a priority on the tests because of how long it takes a lab to get the results. My doctor said she would have them sometime tomorrow, before the weekend and decisions could be made.

My doctor and I also discussed the PICC line, because if all is well, my home nurse suggested that I talk to Dr. Kim about keeping it in while I am out there. Any fluids can be given through it without sticking me once again. The dressing has to be changed once a week and because of this it would have to be done once while I am there so I have to ask Dr. Kim about this before any decision can be made. I am trying not to bother her until I know the results of these tests. I truly have bothered her enough through all this and this is something that can wait a few days.

Other than being extremely tired from all the broken sleep with self cath every three hours all night, I feel fine. This morning I was so tired that after the nurse left I ate breakfast, took my supplements and then came back to bed to try to sleep. I don’t nap well, but did get an hour which is helping me today. I watch for any signs about my body that could be a dangerous reaction to so much antibiotic and so far none have occurred. I am keeping my fingers crossed. If you wind up taking this much antibiotics, then watch for signs of loose stool and fever and double up on probiotics first and ask for help. I wish there were guidelines written somewhere on the web about how much to take so that I could give you a link, but I found nothing. Therefore I just make it up as I go. Just remember that you will be putting back the good bacteria that the antibiotics destroy and don’t worry about anything else. Buy a really good type of probiotic and don’t think acidophilus will help you when it comes to this much antibiotic going into your body. It won’t. I also eat yogurt but this is secondary to the probiotics. Make sure you eat small meals when you take them, regardless of how things taste and your lack of appetite. Believe me taking any drug can change your taste buds. Keeping up your strength is very important to your health.

I have noted while doing self cath something that is different than the first time I did it after the sling was put into me. This time it does hurt when I put the cath in and pull it back out, therefore I wonder if scar tissue could be causing my problems. I hope it will be an easy fix while I am out there and I don’t have to resort to something more drastic. Those of us who do self cath in our beds know we have to protect our beds. I had a couple of the hospital disposable pads from the hospital and I place one under a towel. You can make a mess if you are tired or practicing how to self cath. I had a sudden thought that these small protective sheets are the same as the ones used in puppy training, so I sent my daughter to see what the dollar store had to offer. This is what she found. 4 sheets in a packet for $1.00. I replace one every 3 to 4 days unless I mess one up, so it is not very expensive.


22″ by 22″ is a good size.

The most shocking part of my antibiotic treatment at home is the cost. Medicare is paying for the gentomycin thank God because it is a very expensive drug. So far all I have had to pay is about $30 for all the IV bags. However they don’t cover the supplies to do it, and for fourteen days it has cost $350. But I can’t put a price on my life.

I know there are so many women reading this blog who will now worry about what if things don’t go well first from their removal surgeries and if they will become incontinent, so I decided to try to address it this time. First I have said over and over again that it is a risk yes, but the risk comes from a severely damaged urethra where mesh has eroded through it. Most women do not have that issue and when the catheter is removed after mesh removal surgery they can pee normally, even if it takes a few days for perfect urination due to swelling. I know this for a fact because they tell me how it has gone for them and I just heard from another woman who had removal eleven days ago and she can also pee. So I am thrilled for her.

So now what? Well I can tell you this. Had I had the money to go to UCLA far sooner than I did, I think the result would have been better than it was. It was two years and seven months before it was removed and I have just read my operative notes from when Dr. Raz removed it. He stated clearly that the mesh had almost pushed through my urethra, thus causing so much damage. I am fortunate that it had not fully gone through or I am sure the damage would have been far greater and I would have been on extreme pain medication. As it is, my urethra sustained enough damage that cannot be fixed, hence my incontinence.

I have heard from many women who are so fearful incontinence will happen to them that they have not been able to make an appointment at UCLA for consult. I understand extreme fear and anxiety but I will tell you this that by waiting much longer you could run into a situation that is far greater than you have, if you go sooner. Mesh complications do not stop, and they simply get worse over time. So you may want to think about this and try to help yourself the best way you can.

I made a committed promise that what I write here will be the truth. I have not liked facing the truth myself and I understand how this truth can affect others. But I cannot lie to make you feel better and then allow you to go through things unnecessarily because I covered things up. You don’t deserve my silence. You deserve the truth which you can digest and deal with as and when you can and then make informed decisions.

I once met a woman in the past that had fascia sling surgery and she was doing very well. What is determined for the best result is how much damage we had from the mesh itself and past removal surgeries. These can be a huge factor in how this surgery affects us. So there is no way to tell how well any of us will do until the surgery is done. If the incontinence is terrible after removal then we take a chance or not on having the surgery to try to correct the problem. It is a giant decision that none of us take lightly. We should never have to make this choice because the mesh slings are supposed to be little miracles with side effects that are easily managed. However, we all know now that this is not true. This is why I began this blog and the truth will still prevail.

I did hear from two other women over the past few days that had this surgery. This is what the first one had to say.

Linda, I have not kept up with your blog in a while, I just read you cannot avoid after the Burch. After my explant I had to return for Burch, then within six months I had trouble voiding so I returned to UCLA for the 3rd time to test then surgery for urethrolysis to help me void. After the 3rd surgery I thought I was done, well sadly I cannot void again when I sit on the toilet. Only way I can void completely is to stand up rear sticking out with a cup. This is the only way I can void or another option is to self cath. Self cath is a problem too since my urethra have been mutilated from the various surgeries to scar tissue removal. I wanted to ask you if you had tried voiding standing up. Prior to my 3rd ucla surgery I had squat but even that does not help much but still better than sitting on the toilet. One dr told me it was physiologically more normal for woman to squat than sit.
Btw, unable to void is my secondary problem, I cannot have bowel movements on my own because of the damage and I have to do high colonics, quart or more of water or go to a colon hydrotherapist. I have spent thousands just trying to have BMs, it is ridiculous. I can’t pee or poo am bloated all the time.

I feel for you….sigh

And she feels for me. Wow, I truly feel for her. At least I do have normal bowel movements which is one thing good I can say.

Then I heard from a second woman who had this surgery done not long ago.

Linda I am so sorry for the horror you are going through. I too had a fascia sling implanted on May 1st. I go for my 6 wk check up tomorrow. I had problems voiding too when I first got home from the hospital. I felt pressure and urge to pee all the time but could only void drips or at the most 50 cc’s at a time. This went on all day and I began to panic as I was afraid that my bladder was over filled and not emptying. I went to the ER and they got me to pee and then they scanned my bladder and to my surprise only a small amount was left in my bladder. I believe my bladder doesn’t hold much either. I couldn’t understand how my bladder wasn’t full b/c I was barely voiding anything the entire day and night. The dr said that even though I was voiding tiny amounts that it must have been emptying enough because I was running to the bathroom so often. The reason I’m telling you my experience is because maybe this might be happening to you too. I have been reading your blogs and I feel so bad for you. I wish I lived in California because I would personally make sure you get to your medical appointments and you would have a place to stay too. But, obviously that is not possible so I thought I would explain my situation in case you may be able to void just tiny bits at a time, may be a beginning for you. Running warm water on you while you sit on the toilet helps too, even better if you have a stiz bath. I just cannot imagine having to self cath every 3 hours… hang on Linda; you WILL get through this. You have so many praying for you. *hugs*

I appreciated what both of these women had to say because you need to be able to read more than my situation. I did explain to the last lady that I cannot void at all and when I go to the toilet and dribble it is only because my bladder is overflowing. The dribbles quickly stop and then I self cath and find out how much is left in me. It is always almost my bladder capacity. If you are going to have this surgery ask your surgeon after urodynamics testing, what your bladder capacity is. For most of us, our bladders will hold far less than they used to because they are often restricted for so long and tend to stay that way. I don’t know if they will eventually return to a more normal capacity. I am not sure anyone has actually addressed this issue.

Dr. Raz actually told me that if when I self cath it is less than 100 ccs then I would not need to do it. But mine is always a much higher amount and almost always the entire amount of my bladder capacity. I don’t have a choice but to self cath and not doing it can cause major issues such as kidney disease. I have worked too hard to stay well and have to keep trying to stay on top of this.

I hope some of this blog will give you a few answers if you come across any of these issues. The hardest thing for any of us is not to understand what to do in the darkest hour of the night when we are alone. Everyone will have a different experience, but some things will be similar and something I right will help you through your time of fear and suffering.

My journey continues……………

11 Comments

  1. Terri Studevent

    To all My heart goes out to you all. When I feel bad because I go in for a Fistula fix and a Cystocyle correction post Mesh removal, I read these stories somehow I don’t feel alone. I don’t have infections at this time however its not over yet. it sure is demeaning to wear depends, or pads and pee thru my clothing. However I can poop. Somehow that makes me feel ok after hearing that woman’s story. I am facing surgery with Dr Raz July 8th. I hope he can fix that Fistula with no complications. I also have the case that Dr Raz says ” I had the most Mesh in someone he’s ever removed.” When I go in everyone knows me for that reason, all the fellows, the nurses and staff. The doctor that put the Mesh in put mesh over mesh in my posterior repair. Sheeze! I almost died during removal. But hey according to the dumb asses that says minimal or no complications they are quite blinded. I often ask myself Why? Why would they deny the damage it has done? Why continue to hurt innocent females. We trusted in their Hypocratic oaths! This all saddens me. I feel so bad for all who suffer. But, I keep hoping that our bodies will help repair themselves after the infecting Mesh is out of us. That is my hope, coupled with good diet, supplements and good doctors. I can’t give up! You out don’t give up the fight. It’s a long road, different for all of us but I think we can do it.

    My love to all.

    Terri

    Reply
    1. lavalinda

      Terri I don’t leave until the 9th July so we should be able to meet. Yes we are all surviving in very different ways so that we can speak out and tell other women what can happen to them. We have to do it so that many more women won’t be suffering. I never give up either.

      Reply
  2. Terri Studevent

    To you Linda,

    My urethra was damaged as well. Dr Raz says he will repair it during my next surgery. It scares me to hear your story. I too had a sling, for no good reason either the doctor said once he corrected my rectocyle I the would suffer incontinence. I argued that i didn’t need it, but “trusting” him was a Big mistake on my part. although I gave him a fight he obviously won. I trusted him, oh how sorry I am. I was in so much pain during sex I had to take Percocet just to be intimate with my New husband. It hurt him as well. It ruined everything for me. It angers me to hear that the Mesh doesn’t have complications as I am sure it angers all.

    This is mind boggling. I am trying to be positive but heck it’s hard.

    Thanks to all for sharing.

    Terri

    Reply
  3. RR

    LINDA, I JUST NOW SAW YOU HAD A PART 17! I RESPONDED TO YOU ON PART 16 I AM SO GLAD THINGS ARE LOOKING UP SOME ON PART 17 AND WILL KEEP YOU IN PRAYER AS I AM BACK OUT IN LA FOR MY INTER-STEM JUNE 24TH AND JULY 1ST. SO PLEASE READ MY COMMENTS, TAKE MY APOLOGIES TO GETTING BACK TO YOU. WE WILL BOTH BE THERE AT THE SAME TIME I SEE! FROM YOUR FRIEND AND ONE YOU SAVED FROM THE QUAGMIRE OF MESH SLINGS NO MATTER HOW LITTLE OR MUCH I HAVE BEEN HELPED! I HAD A DR. UNDERSTAND IT AND BELIEVE MY WHOLE STORY AFTER HAVING 12YRS OF IT AND LOSS OF MY CAREER BECAUSE OF THAT ONE DAY IN MY LIFE AT AGE 42! God Bless ya! RR

    Reply
    1. lavalinda

      RR I am hoping we finally get to meet out there. I will be staying at the Tiverton and I will get you the room number as soon as I can once out there. Time to give you a hug.

      Reply
  4. SojournerPA

    I have taken Florastor while on antibiotics as it is the only one I know of that the antibiotic does not kill off. I wonder if a dietitian would be a resource to ask about the quantity and quality of probiotics?

    Reply
  5. Beverly Martiniano

    Linda, when Dr Twiss did my surgery he did a Pubic catherater instead of a foley as I have major pain with a foley. They think that is a allergy to latex. I seems to me that a pubic catheter would be a big help with your problem. You are able to urinate normally, but anything left in the bladder is dumped through a tube coming out of the pubic area. This would elemenate you having to cath each time and every 3 hours. You would just need to release the urine through the tube. Thought it might be something to ask you doctor about. I am so sorry you are having to go through all this. Dr Twiss has put me on Vesicare for incontinence and it is working pretty well. I am still making a decision as to whether do to surgery or not. Time will tell, but at this point I am only having leakage if coughing or sneezing and laughing. This is where I started in 2008. I think I can live with this. Still having bowel leakage and we will address that in Aug. My prayers are with you and hope this journey gets better for you soon.
    Hugs to Meshies
    Bev

    Reply
  6. Terri Studevent

    Yes Linda I hope we can meet private message me and we can exchange numbers.

    Reply
  7. Elizabeth

    I cried as I read everyones stories. I thought mine was bad. I pray for you all. I had my surgery in Nov. 2012. I had a hystorectomy, pelvic sling, rectal sling & bladder sling. WORST day of my life( I am only 46). I was told I would be down for probably 2-4 wks…..more like 2-4 months. I lost almost 30 lbs ( the ONLY good thing to come out of this). Was told I would NOT have to go home with a catheter.Not only did I leave the hospital with a Foley, after 2 weeks, I then had to self cath for another 2 weeks. Ok, I survived that, but what about my new granddaughter, whom I still cant pick up w/o pain. I cant stand, sit, walk, bend over, squat, NOTHING without pain. It is a constant feeling of ants stinging me in the bladder area. I have horrible groin pains all the time. I cannot have a bowel movement without laxatives, & enemas. My husband & I cannot have an intimate relationship because of the pain for both of us. Bigger problem….I live in a very small town & cannot find a Dr. to treat me now that the surgery is over.
    My surgery was in a nearby larger town, but no Dr. will see me because surgery was done already by particular Dr. Not an option right now for me to move, so I will continue to live in pain & cry myself to sleep at night . I read your posts hoping for a good outcome for someone in this position. Prayers & best wishes to you all!!

    Reply
    1. lavalinda

      Elizabeth you did not say which State you are in. You don’t have to live with this nightmare the rest of your life. If there is any way you can get out to UCLA at least be evaluated. This blog will take you to many links of my journey out there and my subsequent full mesh removal. I am ten times better off than I was when it was in me and you can be too. There is a blog there where you can raise money to help with the trip. It is called mesh no money. Read everything and make a plan for a better future. Many women have had no repercussions and no incontinence either. They are living again. http://teapapers.com/bladdersling/2013/02/mesh-is-a-journey

      Reply
  8. Elizabeth

    I live in Florida and I am willing to try anything. The financial aspect has kept me from going much further, but I will check into this link you have sent. Thank you so much for giving me a spark of hope! Have a glorious day!

    Reply

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