The High Cost of Self Cath

Before I begin this blog I am putting out a call to the lady who called me from France and told me about her amazing doctor who removed her mesh. Someone else in France is about to undergo a fifth surgery and she needs to find a surgeon who may be able to help her. Please can you email me and when I am back from UCLA I will talk to you. It could change the lives of others. Thank you.

Now for this blog.

I know I often must make some people very uncomfortable with the words I write because of my direct, honest approach to how mesh complications can affect a woman’s life. I don’t write this way because I want to make people feel uncomfortable. I write to bring the truth to the forefront and hopefully one day that open, honest truth will wake up the world to understand what is happening to women. If it causes discomfort and a stir then perhaps it will create change.

I wasn’t planning on writing another blog before I leave for UCLA. I have a lot to do and little time left to get things together. But the package I received today prompted me to write about another truth that is happening to women.

“If I don’t write it who will?” That is often a question I ask myself. The world can shy away from these difficult or distasteful subjects and they can remain swept under a rug. But self cath is a part of many mesh women’s lives and they deserve that the world know what this is costing them in more ways than one. So if this gets tongues wagging and shockwaves rolling then perhaps the destruction of women’s health because of mesh products, will one day be in the forefront of the media. Then maybe someone, a good and concerned doctor will speak out in our defense that these products should not be used without further and complete studies. If that is the case, then I don’t mind being the bearer of honest news.

Over the course of the three years I have been writing this blog, I have gone through many lessons in mesh complications, some of which are due to my own experiences. However my vast knowledge has also come from the experiences of other women who are struggling through their own difficult health changes. Many have openly expressed to me that they are dealing with self cath and the cost it involves. I did self cath after my original sling surgery when I found myself unable to do something as natural as going for a pee. Yes that is what most of us call it. The sling had my bladder locked into a state of non working and it was a terrifying experience. One day you can and the next you can’t. I wanted to scream.

Doing self cath on a regular basis can cause a huge change to one’s life. You have to live by a clock and figure out when and where to go to do self cath. If you are young enough and agile, you can adapt to doing this over a toilet. One woman told me her sister actually tapes a mirror on top of her toilet so she can see where to put the catheter. She told me she saw her sister do it that way and was amazed. No it is not easy for women to find the right place to put it, regardless of what doctors may think. It is a struggle for many women, especially when they have other injuries due to mesh or issues with their sight.

Being forced into doing self cath all because of bladder sling mesh complications can cause women to go into deep depression. Many stay home away from the public eye. They don’t want friends and family to know and they feel that there is a stigma attached when you can’t be normal. Remember that none of us have cancer or other issue that others will sympathize with. We are mesh women and there is no category that explains all our health issues. Doctors want nothing to do with us either. It would be enough to give anyone a terrible complex, and then to add issues that should be normal, it is not surprising many women suffer emotionally.

Then there is the financial cost. I had no clue until now exactly what doing self cath costs over a money. When our bladders are injured by mesh, they become smaller and do not hold the content of a normal bladder. So we have to self cath more than normal. My bladder has a capacity of 280 ccs, which is not very much, so she suggested every three hours. That would be eight times over a twenty-four hour period. So she put in a prescription for me regarding that amount on a monthly period. I heard from the company and they told me that Medicare would only pay for 200 in any month. Eight a day runs around two hundred and forty. I had received a small order a couple of weeks ago, and now I am set up for two hundred each month. So I will continue to adjust down the amount I do so that I stay in the 200 guideline. Today the package arrived.

There are six boxes of thirty and twenty loose ones to make the total two hundred. Now here is the shocker. An invoice was inside which thankfully I do not have to pay because it is covered by Medicare. But I wondered how on earth mesh injured women could even pay twenty percent of the cost even if their insurance did cover it. This is because two hundred cost $736.00. No I am not kidding.

This is almost as much as I receive for my Social Security every month. Now ask yourself why our FDA would not step in to stop products being used that can injure thousands of women and they have to pay out this much money every month. It does not make sense.

Yes I am lucky because it is covered by Medicare. What on earth do women do without any insurance? Are they washing and reusing a few and then have the consequence of more infections?

No I am not lucky in as much as I have to go through two hundred of these every month, which restricts my normal activities and thinking. Doing self cath always makes you feel less of a woman. All this has happened because of a small piece of mesh. Yes, I have never forgotten the last urologogist words. “I have never seen this small piece of mesh cause any damage”. Ignorance or denial? I feel it is the latter. That is why I keep writing and keep exposing what is going on with these mesh products.

If my shock value will change the life of one woman then it is worth doing. They cannot say these products do not hurt us. Doctors cannot say they don’t use the mesh that hurts us. They do!

I have always had to live frugally during my lifetime to make sure I pay my bills. Believe me I think about it each time I use one of these and know after a minute of use, I will throw away almost $4.00. What sense does any of this make? Where are the answers we mesh women seek? ………………………

 

 

 

5 Comments

  1. Barbara Vance

    Outrageous! Just another example of greed! Its all about the all mighty dollar!

    Reply
  2. Venita

    I am so sorry that you have to go through the self cathing thing. I have had to do it since the second day after my bladder sling surgery. It is a terrible thing to live with I know. I am thankful that I learned to cath in bathroom but still if I go to the hospital sometimes they have me squat and cath in the room which is horrible, gross and unsanitary. Now I have no urge at all and my bladder is so over-extended that I’ll never NOT cath I think. I’m up to 800cc’s and have bladder retention so bad I would need a complete bladder/urethera reconstruction to even think about a normal urination now. I, like you, was told by my doctor to cath every 3 hrs but when you only have 200 a month that means either boiling and reusing or waiting (stretching out your bladder even more) it was a complete nightmare. It surprises me that I can get used to a nightmare but unfortunately I have now since it’s been 7 years. I want this mesh junk out but I can’t do that unless they can do a reconstruction. There’s no way I can go to CA, heck I can’t even afford to go to Dallas and that’s just 2 hrs away from me. So I deal, I live, I cath and pray I don’t get another infection. I have Chronic Lymphocystic Leukemia so it is important to not get infections so my oncologist prescribed my 280 a month ‘for life’ to help prevent using caths over. I am thankful for that at least. I do have less infections but like you there will be a time I can no longer self-cath and then what??? Too scary to think about. God bless.

    Reply
    1. lavalinda

      Venita it is so terrible you have gone through all of this for seven years and the fact that they make you squat and self cath in a room is absolutely disgusting. I can tell you that at UCLA they have done amazing things with bladder issues and I hope one day you can go to Dr. Raz for a consult and just ask what he can do for you. You may be surprised.
      Your words here are important to show the world just how bad mesh is on any woman’s life. All I can say to you is, I care very much.

      Reply
  3. Val

    I’m glad you had the courage to write this and I’m sure it will be a great comfort to other women who are going through the same thing. Having to buy self catheter supplies and the cost involved just adds to an already frustrating predicament and I know how you feel as my sister has had to self cath for several years now. Although it does get easier, it’s still a challenge that has to be faced every day. Having support is what has helped my sister the most and also a good product supplier like the one she uses at http://selfcatheters.com/ can help ease the situation a little. Wishing you all the best.

    Reply
    1. lavalinda

      Val I do not know if you can be helped but why don’t you get in touch with this surgeon and see. He can rebuild vagina’s and help many who feel there isn’t any. http://teapapers.com/bladdersling/2013/12/meet-dr-veronikis-a-great-surgeon/

      Reply

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