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  • #61
    Hey all!

    I received my Cystoprotek today - only about one week after ordering it!! I had to pay about $ 10 in Customs charges, which I expected, but there were no issues at all with recieving it! YAY!

    Happy Easter everyone!



    • #62

      Hi everyone.

      Glad to hear you are all getting your meds sorted out and that you can buy them easily. I pick up things in the States and bring them home also.

      I am not on those meds as mine is retention so I try to buy really good catheters and use baby wipes by the case load as they seem to be better than toilet paper for some reason. Cuts down on the bladder infections for some reason.

      I got Medtronic to send the safety info to the knee surgeons and to my family doctor so now they all seem to understand why I was asking them to be careful with my device. So now they really hate me!! They don't seem to like patients who point out these things to them!

      Thank goodness for the Site in the States as I would not have known about any of this if I had not posted on their site and someone posted it. I am so grateful for them doing this. Medtronic also sent me out the new manual for my device but there was very little in in and try to get the surgeons to look at it!!

      I have had so much support from the site in the States and I am so happy that they care so much. Makes me feel better to know that I am not alone and that others have been thru this and that makes me feel so much better.

      Mine was the greatest device until the diathermy. Then it went to !!! and has never been the same but hopefully this new device which is slimmer will be the answer. I did tell the surgeon I want to lose some more weight and he said with this new battery I will be able to lose all I want.

      Now just to get it put in!!! Please, very soon. Get it programed and give it another chance. Medtronic do not want me to let the cat out of the bag and I don't want to scare others but I need people to understand when things go wrong that no one is there for you and you get "tossed"!

      The Province approved the cost of a new device so my surgeon can go ahead and I just have to wait for a surgery date. They also cover my airfare so they phoned and told me to call them back when I get the surgery date.

      I hate the silence over long weekends as it makes the waiting seem so long.

      Debbie, did you hear from Paula at all? Let me know. I sent you an e-mail at your e-mail address but it seems not to be working.

      I have the x-ray that shows the device and the old wire that had to be left behind. I am back to the serious leg cramps and the toe problems but I just turn the device off at bedtime and that seems to stop the problem (why do these things always happen at bed time)?

      The battery I have right now is trying so hard to come thru my skin and I can just imagine showing up at the ER and telling them my "battery has broken thru the skin"!! They will call the psych ward.

      I told the Ministers office today (that is where my contact person is and has been for all these years) that I will have to phone them and they will have to bail me out!!! At least we can laugh now and then.

      If I do not turn the device off at night and I "rub" it during the night it stimulates the device and sends everything haywire! I try not to sleep on that side but the knee on the other side does not like being slept on either.

      The pain killers I have do "numbers" on my mind and the pills for the nerve pain put me on "trips" you would not believe. Why people think drugs are "fun" is beyond me!!

      Not sure if I like any of it. All I can do is pray and hope things will get better again.

      Have a wonderful weekend and I will check back next week and let you all know what is happening. The sun was shining beautifully today and it was snowing at the same time.

      If you hear screams it is just me in Western Canada taking aim at Medtronic and the surgeons.

      Barb 1


      • #63
        Hi Barb,

        No, have not heard from Paula at all , all I know she is recovering from foot surgery ..
        Her daughter is helping out at the office ..

        So is Dr . Hassouna doing the surgery for you Barb ??

        My email is the same I wonder why,. I will send you it again okay !!

        Well all I can say WOW , to what you have been through ,. only wish you all the best Barb.

        Take care and will be thinking of you.

        Thinking positive has got me through to another day!!


        • #64
          Hi Debbie,

          Did you get coverage for your new device? I know you said that Ontario was cutting back and you might have to pay for your own.

          How does the device work with your cancer treatments? Do you have any problems with interactions with other medical devices?

          Someone on another chat site told me she could not have certain cancer treatments because of the device.

          Someone said the price of a new device is around $7,500 and someone else said they are in the thousands so not sure what you would have to pay.

          When we are so sick they know we cannot afford that kind of thing so what do they expect us all to do?

          Hope you are well.

          Barb 1


          • #65
            I recently watch I am not sure it was W5 or 5th estate, you can watch these shows on the web, but it was about people needing meds in Canada and them being priced out of the market for people and our med not paying for it.

            For example thalidomide is used now to treat something some type of cancer with good results, Canadian gov won't pay for it and it is 3500 a month, but you can buy it in Mexico for 100 per month, but if you do then Canadian Dr. can't treat you. Very interesting show. For this show the gov decided they would cover this guy on compassionate reasons but a month later revoked it.

            The drug company's basically can charge what they can get for meds. This is a very old med, used in the 60 for preg women who ended up having deformed babies it was then taken off the market but has reemerged for other treatments.

            If I can find which show it was I will post it. You can go to tv stations web sites and watch old shows. I am really busy today but if i can I will try to find it and post a link to it.
            My are with you all. May you all find a way to peace and joy in your lives.


            • #66
              I think I saw that on the National (CBC) and it was a shortened version of what you saw on the show (maybe it was 5th Estate or Marketplace). I was so upset, especially for that poor man trying to get the Thalidomide. $ 4000 per month for a drug that has been tested and researched for 50 years! Just ridiculous. I was also worried about getting my cystoprotek over the border after I heard him say that he ordered the drug from Mexico and it was destroyed at the Canadian border (I did not have any trouble).

              I'll try to find the link as well.



              • #67
                Where did Quinn24 go? She is who started this thread about not getting any responses to her and I feel bad if she still feels that way. Hopefully she doesnt feel like that since the conversation went array.


                • #68
                  Hello everyone
                  I am new to the site and just wanted to say hello. Great to see we have a Canadian chat!!


                  • #69
                    Welcome Stineangel!

                    What province are you from? Glad you found us.



                    • #70
                      I am from New Brunswick.


                      • #71
                        Hi to the new folks.. I am in N.S. but origianally from Quebec.
                        been a cool damp day here but beats getting snow like some of my friends.
                        God brought me to it, He will bring me through it!!!

                        Diagnosed 2003
                        by cysto/hydro
                        Elmiron took almost a year- made me sick, caused diarrhea
                        Pyridium -Made me sick
                        Detrol and Ditropan, Toviaz and Mrrbetriq- caused constipation and head ache.
                        Tried DMSO instill- had 5 out of 6
                        Started Oxytrol Patch-stopped using them after 3 months-- skin was getting irritated
                        Cysto/hydro April 6th 2011-- on expansion only hold one cup
                        IBS/ IC
                        High blood pressure meds and Crestor
                        Metformin (prediabetic)
                        Sinequan (depression)


                        • #72
                          Hi Barb ,

                          I had no problem with taking any drugs for my cancer treatments at all with the InterStim.

                          Yes , we have to paid to have the battery replaced at the cost of $ 7,000.00 .
                          I know it sucks when you get something that will help you, then you have to paid for it good !

                          I am doing great , just return home from Cancun Mexico had a wonderful time to ..

                          Thinking positive has got me through to another day!!


                          • #73

                            I think there is a lot of misinformation out there about the interstim in Ontario. I was told by Medtronics, MOH and our MPP that we can't pay personally for the interstim because it is an OHIP covered procedure. I had my interstim battery replaced at no cost in January. However, it was quite a year long battle and I never could find out who I was actually battling with.


                            • #74
                              Is this the first time that you had your battery changed Snuph?

                              As I had my done to at no charge but I am told it is the next time I have it changed I will be charge that amount ..

                              There is a group of doctors and patients taking this to the government about this charge to patients .

                              Thinking positive has got me through to another day!!