I'm All Meshed Up

Bladder Mesh Surgery Gone Wrong

Not a Mesh Post but a post on my daughter’s Wedding…I needed a change tonight…hope you enjoy…

I think at some point in all of our lives we have defining moments. At some points those moments come rushing back to us sparked by some event we have just gone through.

 I have to admit that at the time of Ron’s death, I felt like that was the most defining moment of my life. I had survived the horrors of my husbands Cancer and fulfilled my promise to him to die with peace and dignity in his own home surrounded by his greatest loves, his family, friends, but most of all, his children. At that time we were a family broken by pain and death and I remember thinking how would we even begin to carry on from this tragic event.

Over the course of the next few years, my kids and I became inseparable at times…we forged new bonds and picked up the pieces of what was left of our broken family and put one foot in front of the other each day treading new unchartered territory. What we did not know at that time was how strong that bond would become and that it would never be torn apart again.

 Michael’s wedding last November was the start of new lives for us…he was now a married man and was making his own decisions about life and what lay ahead. On his wedding day I looked at him in total awe and amazement at how he had come through such pain from his Dad’s death and then his battle with Cancer and yet he was truly truly happy, he laughed, he cried, he loved  and on that day, my precious baby boy became a man. That was a very proud day for me.

During this time I had met James and my life was filled with such happiness, my kids were settling into their own lives and things were really really good. We had challenges to over come but we stood together and faced them head on. There were times though I felt like our family was being torn apart again by certain events, but once again we emerged renewed and stronger than ever. 

Now came the announcement of Letisha’s wedding so we once again pulled together and had fun planning and celebrating.  Teisha’s wedding for me was much harder as it signified the actual acknowledgement of the death of her Dad. It’s interesting to me how the weddings of both my kids were so different at times and yet so alike. I knew Teisha’s would be more painful in some ways as she did not have her father to walk her down the aisle or dance the first dance with…all the things a little girl dreams about.  So we came up with ways of making her special day just as happy and memorable as Mike’s wedding was.

One of her bridesmaids, Stephanie, came up with a wonderful way in which her Dad could “escort” her down the aisle, and that was to pin a picture of her Dad to her garter belt!!! My little girl had her Dad beside her just as she had dreamed of.  Teisha also gave me the great honour of “giving her away”…I shed a tear or two as the Commissionaire asked “who gives this woman too..” and I very proudly stated. “I do”…my heart was racing with joy and sadness at the same time. For her father/daughter dance, I once again had the great honour of dancing with her to a song her Dad sang to her every night at bedtime, “You are so beautiful to me”…It was a bittersweet moment.

But even with all of these wonderful events taking place, I think that my most proudest and most defining moment of my life came when my son escorted his sister down the aisle. It represented the love of two siblings becoming stronger together and sharing what must be one of the best moments of their lives as siblings. My heart was ready to burst at that moment. I have never had a feeling of such overwhelming love for my kids (aside from the day they were born of course!!!) until this point. I love my kids to death every day but that particular moment was beyond how I could ever find words to describe it. I looked at these two souls who have endured so much in their short lives and thought My God, they are the most wonderful and beautiful people in my life. They came through such adversity to this utmost defining heart warming moment. They put all of their differences aside and joined together in celebrating this moment in time as a brother and a sister who truly love and respect each other.  I have never been more proud of OUR children. At that moment, I knew in my heart that Ron and I had done a damn fine job of raising our children.

I now know that no matter what challenges we have ahead, Teisha and Michael will always have each other to turn too. There are so many people I want to thank but I think its best I just send out a HUGE THANK YOU  as you all know who you are!!! So many people contributed in many wonderful ways for each of my kids weddings and my heart is overflowing with the love that has been shown to my family.

As I sit here writing this, I must admit the tears are flowing because I realize how special so many of you are to me and my family and how grateful I am to have so many wonderful people in our lives. I hope that many of you have such memorable defining moments of pride and love in your lives as have I.

I truly believe that through our darkest most painful times, we emerge as much stronger, tolerant and compassionate people. May all the days of your lives be filled with much love and happiness as mine have. Hold your family and friends close to your heart always….

Love,

Diane

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Never give up Hope….

I am thinking that sometimes life just throws you a curve ball and then tosses you out there to figure out what to do with it…I am needing to dig deep into my soul to figure out what I need to do to get well, focus Diane, fight Diane, never give up Diane.

I was raised with “Can’t or Won’t” are not options and don’t belong in our vocabulary, so now I need to figure out the alternative. The one thing I know for sure what keeps me going is the thought of my beautiful sweet little granddaughter, Lily, she is my reason to fight.

ILY my sweet sweet Lily, you give me hope for a better tomorrow…your beautiful smile lights up my world on the days I am feeling down.

I Love you to the stars, the moon and back again, always and forever,

Nana xoxoxoxo

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Part 4 of Mesh Resources….

In part 3 of my Mesh Blog, I gave you some resources to go to for more info on mesh and the support forums for you to tap into and find help and solace. I hope you are finding the information you have been looking for and I hope you have joined some of the forums and have bonded with some of the most amazing people I have ever come across!

Now in this part, I will give you some very daunting and more than likely overwhelming studies that have been done on mesh and the havoc it plays on your system. This is solely for your information as I am not in any way affiliated with any sites and studies I will recommend. I do not gain anything from the information I pass on, it is simply that, information I pass on to you. Ok, so the legal aspect is taken care of, let’s get down to business with the stuff I am going to give to you…it is raw and scary and there have been articles I still can’t read because all I can say when I do read them is, WTF….

I also have to say that without the hard work, research and dedication by my dear friend and fellow meshie, Nonie, this list would not be possible! She has done the hard work in finding the info and I am simply supplying you with her findings…Thanks my favorite Meshie!!!!

The Components of Mesh:

            www.bostonscientific.com

    2  This is what MESH looks like under a microscope….

          

     3.   an interesting article where Dr. Raz comments on medical mesh injuries in a round table   discussion:

           www.obgmanagement.com/pdf/2102/2102OBGM_Article3.pdf

   4.   now if researchers find polystyrene containers leach chemicals into their experiments and corrupt them..   why would  the medical world put it in our bodies and corrupt our systems?

        http://www.phys.org/news145545554.html

 Plastic additives leach into medical experiments, research shows November 10, 2008 (PhysOrg.com) — Researchers in the University of Alberta’s Faculty of Medicine & Dentistry have shown that using plastic lab equipment can skew or ruin the results of medical experiments. The researchers identified two classes of chemical compounds in commonly used plastic lab ware that leach could into solutions. They further demonstrated that the compounds interacted biologically with, and changed the behaviour of, human enzymes and brain receptors in different experiments. The researchers describe their findings in an article that appear in the latest issue of the academic journal Science. Using mass spectrometry to analyze the solutions at the molecular level, lead researcher of the study and professor of pharmacology, Andy Holt, and his colleagues identified the presence of two families of compounds from the plastic that had contaminated their experiments and produced biological effects: quaternary ammonium biocides-anti-bacterial agents that manufacturers add to plastics-and oleamide, as well as related chemicals compounds used to improve the properties of plastics. Oleamide and related additives are also known to leach into foods and drinks that are stored in plastic, or plastic-lined, containers, especially those made of polypropylene. However, the potential health effects of that are not known, says Holt. “Because oleamide is a molecule found in the human body that contributes to normal physiological functioning, ingesting molecules that are structurally similar to oleamide may either over-stimulate or-more likely inhibit the body processes regulated by oleamide,” he said. Holt’s lab conducts basic research into how human enzymes work at the molecular level. With a greater understanding of how enzymes work, scientists can design drugs that will regulate enzyme behaviour in order to treat medical conditions. But the effects of the contaminants were, “so potent on our enzymes there was quite a significant effect on our results,” Holt said. They traced the source of the problem back to plastic tubes they had been using to prepare reaction solutions. Use of similar tubes also resulted in substantial effects on the behaviour of brain receptors being studied in a different lab by his colleague Susan Dunn, professor and chair of the Department of Pharmacology. Holt and his colleagues tested pipette tips, Eppendorf tubes and Multiwell plates from several manufacturers. The contaminants leached from all of these items in the majority of cases. But the specific contaminants, and the degree to which they leached out, was different in different products. Given that plastics are in common use in research laboratories, scientists everywhere will likely be interested in these findings. “If you are testing whether a drug has an effect on an enzyme and the results are inconsistent-one day there’s an apparent effect and the next day there’s not where does that leave you?” Holt said. “The time and money that is wasted; there are implications for the public interest.” According to Holt, these latest findings have, “significant and far-reaching implications for the integrity of scientific work.” Provided by University of Alberta.

5.    SPECIAL REPORT: Doctor warns of pain associated with using surgical mesh in hernia operations;

      http://www.ktvu.com/videos/news/special-report-doctor-warns-of-pain-associated/vG67c/

6.   some info on another mesh maker’s brochure…now they tell us in small print..almost oh by the way..our product is good but:

        http://www.americanmedicalsystems.com/DAM_public/5823
        www.americanmedicalsystems.com
7.   An interesting Video to watch:
     http://www.americanownews.com/story/17939546/routine-surgery-for-women-can-cause-lifelong-complicati
   
8.  some more info regarding nonyphenol, the toxic crap that can leaks out of polypropylene..

      www.beyotime.com
    
     Molecular Immunology 43 (2006) 915–926;
 
Nonylphenol (NP) is not produced naturally. It is the major degradation products of alkylphenol ethoxylate and is one of the most common chemical contaminants. NP presents in ambient air, water, soil, sediments and biota. It enters aquatic ecosystems through sewage treatment, pulp mill effluent, industrial effluent, urban and agricultural runoff (Ying et al., 2002). NP is not water-soluble because of its hydrophobic properties. It also favors anaerobic environment and is stabilized, thus there are high concentrations of the toxic compound NP in anaerobically stabilized sewage al., 1984). Studies showed that the concentration of NP in the aquatic environment, particularly in sediment, could reach up to 300 ppb (Nagao et al., 2001). NP is accumulated in our bodies through the food chain. Concern has increased recently about the NP because it can mimic natural hormones and the levels present in the environment may be sufficient to disrupt endocrine, immunology, and reproduction (Chapin et al., 1999; Masuno et al., 2003; Ying et
9. wow, just did some quick math for stats in the Globe and Mail article;
25,000 SUI  surgeries per year yr. in Canada with 90% using mesh equals 22,500 mesh surgeries x 15 % complication rate equals 3375 women per year in Canada with a problem !!!!! and I wonder how many of those problems were accurately diagnosed and addressed with skilled knowledgeable specialists? That does not include the 30% of 5000 POP surgeries that use mesh , so 1500 x 15% equals 225 more women with possibly larger amounts of  mesh in their bodies….so estimate 3600 women having adverse reactions and complications from mesh implants per year…. Yikes!!!!!in 5 years 18,000 women  may have been harmed by medical mesh implants!!!!  that’s just in Canada…..  and using a 15% complication is being very conservative !!!!
10. very worthy of your perusal:
     
        www.acog.org
        ACOG-Vaginal Palcement of Synthetic Mesh for Pelvic Organ Prolapse
  

           www.multiplechemicalsensitivity.org

12. Mandate Compulsory Reporting of Surgical Implant Device Complications – The Petition Site

           www.thepetitionsite.com

13.  How Does the FDA Monitor Your Medical Implants? It Doesn’t, Really

       www.propublica.org

14.  http://www.marketwatch.com/story/transvaginal-mesh-class-action-commenced-in-canada-2012-04-17-   10000

15  Another story, friends, of why we need mandatory reporting of medical mesh complications while we wait for the legal system to bring justice and compensation for women already harmed. Perhaps punitive measures by the legal system can do what the FDA has failed to do…force the re-assessment of the use of synthetic medical meshes as a standard of care for women’s pelvic health.. Manufacturers are …going to resist, and probably going to point fingers at doctor error, as manufacturers make huge profits  from sales to the medical world. Some companies attribute at least 40% of their billions of profit to sales of medical devices. Now don’t you think they have means and power and motive to continue to”fudge” the complication rates,and influence policy making? Let’s hope judges that are hearing the lawsuits of women who are seeking compensation are not in positions where their impartiality can be corrupted. Lets pray the judges make it financially prudent for manufacturers to voluntarily recall their misrepresented medical meshes;  (Taken from one of Nonie’s posts..)
16

17   http://www.facebook.com/l.php?u=http%3A%2F%2Fwww.fertilityfactor.com%2Fhow-environmental-toxins-can-influence-     female-cancers.html&h=-AQGd_Ecy

Well,  I have definitely given you more than enough info for now! It will take you awhile to read through it all and then digest what has been said. The more educating and advocating I do, the more boggled I am as to why this ever happened…that part never goes away for me…

I would like to Thank ALL my fellow “mesh” friends for coming up with this very impressive list of reading material!! We all work together and one persons accomplishment is shared by us all.

Happy Reading and I will post another part to this list as we build it! We have many researchers and the amount of time put into one of these lists is mind-boggling!

“Often daunted, NEVER defeated”

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Mesh is “meshing” me up badly…

I havent written for a bit as I’ve been thinking about the course of my life as it is and having somewhat of a struggle with accepting where I am at.

I never in a million years thought this is what my life would be like at this age. You can call it a pity party or a feeling sorry for myself week or what ever you want, but to me it is watching my life spiral out of control, a slow painful spiral downward to god only  knows where. I have noticed a significant decline in my health over the past few months and more so in the past few weeks.

I used to have a few good days or even a good week in a row and then I would have a few bad days…not ideal but manageable. Now I’ve noticed that my good days are few and far between and even on the good days I have to really pace myself because if I over do it I will end up on the couch for the next 3-5 days.  That was also not ideal but manageable.

That has now been replaced by a good day here and there in a 2 week span and the rest are uncomfortable, painful days filled with a lot of anxiety and panic attack issues. The anxiety level has noticeably increased in the past 4 weeks and I’m not sure how or why they have become a part of my everyday life. Only 4 weeks ago they were maybe once or twice a week and now they are daily and sometimes more than once or twice a day. I have also started having “night terrors”…these are horrendous, you wake up and try to get up but it feels like someone is on your chest holding you down, you literally can’t lift your head off the pillow. It is terrifying. I discussed it with my GP and he said that although I “feel” like I am awake, I’m actually not. I think all of these symptoms are because my body is under attack on a daily basis from the mesh that has taken up residence in my pelvic area. This is only an assumption on my part, due in fact to the medical profession not wanting to actually come out and say, “yes, the mesh is messing you up”.

I am involved with a group of people I liken to my second family…they “get” me on the good days, the bad days and everything in between, just as I “get” them. We have a bond that is unbreakable as  we all go through our daily trials and tribulations. I don’t feel like I am “whining” when I spew off my disgust at everyone from Doctors to Manufacturer’s who  clearly do not have our best interest at heart, because I know I am only saying out loud what everyone else is thinking. We take turns on a daily basis taking care of each other, helping whoever needs a big hug and pat on the back, and some days giving some people a good talking to about taking responsibility for their lives and the path they have chosen for themselves. We are good together and we do not fight or name call, we are family and we treat each other with respect. Today I am feeling like I am not involved with them as much as I should be. I need to deal with this issue. I will sleep on it for a few nights and I know I will have more clarity on what to do.

I feel like my pain is overwhelming and taking over me. It’s not just a physical pain, it’s a very emotional pain and that for me is the worst part. I can deal with physical stuff pretty good as I watched my husband die from Brain Cancer over a 7 year span and when I feel like I am at my wit’s end with my pain, I think of all that he went through, and very rarely was there ever a complaint. He was truly amazing and to this day remains an inspiration to me to keep going and never give up. “Do not let the pain take hold of you” he would say, “You are stronger than it and it will only take over if you ALLOW it to”.  So on a physical level I can cope pretty well. The hard part for me is the emotional part.

I feel like I am drowning some days, drowning in too much information, drowning in not ENOUGH information and drowning in all the things I have to stay on top off…its a constant daily struggle to be on top of all your various medical appointments for all your various doctors, specialists and surgeons.  Then you have the political aspect of this whole damn mesh, sure I could just lay down and let someone else do it, but that’s not me…I am more determined than ever to see that the powers that  be take responsibility for what has been done to me and my fellow mesh family. Somewhere someone dropped the ball on this and that needs to be brought to the forefront of this fight.

I personally don’t think there will ever be a day when someone steps up to the plate and says, “We messed up and we are sorry for your pain and for what your future holds in terms of future surgeries and ongoing medical issues”. If that day comes, I will probably cry because that would truly show to me that the “industry” does indeed care about me as a person, not a “lot number” for my implanted medical device. There have been so many times during this journey that I think back to the movie, “Erin Brokovich” and how she fought so hard for those families and there was never an apology from the company involved but at the end of the day, the families were monetarily compensated but more importantly, their voices were heard and the companies were “shamed” into admitting they had done these people wrong…to me, that is sweet justice.

The other issue that is weighing heavily on my mind at present is waiting for surygery…I would be a liar if I said I was looking forward to it…I am in one way but there is another part of me that is wondering are we just opening up a whole new can of worms. There are so many differing opinions on whether to have “total” removal or “partial” removal and then there is the issue of who is capable of doing the surgery. So, that is another avenue I am researching daily…I spend hours checking out all the Surgeons and who is capable of what. It is scary, you have to go into this surgery armed with information or pay the price if you don’t. 

As of today, I have been told to pretty much stay immobile to aliviate the pain and pressure of the mesh erosion until surgery which is not going to be for another 1-3 months. Apparently there is a shortage of anesthetics at the Hospital I am going to so that has cut the surgical hours back for my Surgeon. I have been advised to not lift anything heavy, stay off my feet as much as possible and try not sit in an upright position due to the location of mesh erosion. I think its going to be a long few months. When this information was delivered to me, I initially cried and then I felt guilty, something I am working hard to overcome.

I hate the feeling of being dependant on people…for me that is feeling incapable of looking after myself and being a burden to my family and friends. I know it is my mind running away with me because I know with 150%  certainty James is here for me and so are my kids…my family and friends are always here for me as well but I try not to ask because they all work full-time and have their own issues in life. My sisters are busy caring for my Mother and all of her health issues and appointments, I can’t thank them enough for all they do for her and yes, I used to feel guilty about it. In the past few weeks I have been able to get my “guilt” issues under control by coming to realize that I DID NOT ASK FOR ANY OF THIS TO HAPPEN TO ME, however, it DID happen and I have to deal with how it affects every aspect of my life. So I have finally cut myself some slack in the guilt department.

Its been a long day and I have had a lot to think about… tomorrow is a new day and with a new day brings hope, hope for a better day and a step closer to getting my life back in track.

 

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