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I get to go to the Cleveland Clinic, woo hoo! :)

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  • maryla
    replied
    Dr. Rackley

    Lori,

    No he never mentioned any immunosuppressant to me. He did say that usually by the time that IC patients got to him it was time to remove their bladder. However, with his new treatment regimine he is seeing better treatment results.

    Now I remember the bug.....it's called uro plasma.

    He does seem more ready to use more unconventional ways to treat IC. Oh, also, he said to stop all insaids.

    All the meds that you mentioned didn't do anything for me but make my symptoms worse. So, you are not alone on that one.

    PLEASE, don't give up hope Lori. I'm on my 3rd month of the instills, which he said that it takes about 6 months for the bladder to heal. Dr. Rackley did say he would take out my bladder than if the instills didn't work by than.

    I also have 2 uros in Cincinnati, which 1 is a surgeon and he will remove my bladder with a robot, Da Vinci, it's called. So, right now we are just getting prepared if the instills don't work. The procedure with the Da Vinci is supposed to be less invasive with a much more speedy recovering process.

    But again, Don't give up hope. I wish you nothing but the best with tons of relief.

    God Bless,

    Leave a comment:


  • ICLori
    replied
    Hmmm....Mary, does that mean Dr. Rackley does not use immunosuppressant therapy for IC? That all he does are instillations? I hope he has more than just one treatment for everyone....

    I'm going to try to see where the Cellcept trials for IC are....see if there is a place nearby, see if I can qualify for the trial. Of course, one never knows if one is getting the placebo or the real stuff, is the problem....

    Do you think I will have a chance of talking Dr. R. into allowing me to try another immunosuppressant, maybe one that isn't so hard on my kidneys? Or maybe if I went off it for a month or two, got my kidneys back to normal, then I could try it again at a lower dose this time (the CyA I mean) and see if my kidneys hold up at that dose.

    I'm just frustrated because immunosuppressants were the only thing that worked for me. And it really bugs me each time a doctor (this is not the first time) thinks something is the matter with ME because Elmiron, Atarax and Elavil did not work.

    Blessings,
    Lori

    Leave a comment:


  • maryla
    replied
    Dr. Rackley

    Lori, THAT IS GREAT NEWS!. I have been to see Dr. Rackley and he is great! He started me on a treatment regimine of at home instillations. He works with a team of Drs. actually and you will meet them all. I talk alot to his PA Maria. I can call them anytime and they always get back with me right away.

    One of his first test was for, (vaginal) (I cannot remember the name of it, dang FM fog) Anyway the test came back positive for the bug and both my husband and I were treated with antibiotics for 10 days. It can memic IC. It didn't help though.

    One of the aspects of his visit that really started me thinking was he said, that I just didn't just get IC 3 years ago, it has been there a long time. And yes, thinking back now, I have always peed more than anyone I know. About 20 years ago I kept having what my uro at the time called cronic uti's and I was on antibiotics for a year once. Also in my 20's I had a hystorectemy and 4 years later had my ovaries taken out. ALL probably NOT nesessary. I've alway felt pain and pressure in my vaginal area. Anyway, it has gone untreated for sooooo many years that now it's hard to get good results with any of the treatments.

    Dr. Rackley wants me to try the instillations until July. So far I haven't had good results with them, but I'm still doing them up to 5 times daily. Like I said I think my bladder is beyond repair because of lack of treatment at an early stage.

    I feel very hopeful for you and have been praying that you will find some relief and going to see Dr. Rackley is a wonderful starting place!

    God Bless.

    Leave a comment:


  • ihurttoo
    replied
    :woohoo: I am so happy you are going there! As you know, they have a wonderful reputation in the IC Community, and worldwide. I agree with you that they are so knowledgable there that if anyone knows what your next step should be, it would be them.

    Good for you for standing up for yourself and advocating to get the best healthcare you can! Way to go!

    Please post and give us an update after your visit there. I cant wait to hear all the details!

    Hugs,
    Amy

    Leave a comment:


  • waterflow
    replied
    Hey, that is great news! :woohoo:

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  • Trishann
    replied
    Lori that is such wonderful news. I am so happy for you, and that you get to see a doctor that really knows about this stuff. Lori I know it is hard to let go of something that has been helping you and the fear that goes along with it, and I am so sorry that this Cya is causing problems with your kidney, but I am hoping that this doctor can find something that can still help you without causing your kidneys to shut down. I think sometimes we are willing to sacrifice one for another, but hopefully you will not have to continue to do this. Hope the very best for you Lori.

    Sending hugs, Trishann

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  • Vicki
    replied
    Lori- I am so happy for you. I think that is one of the best places in the country! I will be praying for you as you certainly deserve some relief. -Vicki

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  • ICLori
    replied
    Thank you all so very much! I really am excited about going to see Dr. Rackley. I've read some on-line articles about him, and about some of the research studies he has done, and he really does seem to be one of the leaders in the IC community.

    Blessings,
    Lori

    Leave a comment:


  • KarenIC
    replied
    Hi Lori,

    This is wonderful news!!!!!! I'm so happy for you!


    Karen

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  • Berkshire Road
    replied
    :woohoo: If anyone deserves a bit of good fortune right now, it's you. How odd -- sometimes life is fair!

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  • Annie2
    replied
    I am so glad things have turned out so well for you, Lori!!! :woohoo: Way to go advocating for yourself as well as for others! You fought quite a battle and won an impressive victory. I hope CC will give you the quality and compassionate care you so deserve!!!

    I hope, too, you will find a good PCP (and nephrologist) in the civilian sector. Choose carefully. You may want to interview a few before settling on one. There are some excellent civilian doctors around here, but we also, unfortunately, have a few who are less than stellar.

    I agree with you when you speak of this wonderful group of people as a family. I think many of us feel that way. This is our "cyber home" and, though it is a cyber place, the real emotions and outpouring of loving support is very very real.

    So happy you have fought for and have been granted such outstanding medical care!

    You're always in my thoughts and prayers.

    Leave a comment:


  • sunshine_77us
    replied
    Cleveland Clinic

    Good Luck Lori. It will be interesting to see what they tell you.

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  • SharonA
    replied
    *Thumbs up* Lori.

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  • Janie Miranda
    replied
    Oh this is great Lori!!! Surely you'll get some real help from these IC specialists!! I'm so happy for you!

    Leave a comment:


  • leelee88
    replied
    Oh Lori thats great news!!!!

    I am so happy you finally are going to be able to find some pain relief:woohoo: ...You have been through so much you deserve this..Please keep us informed on what kind of treatment that they will be giving you..

    I have prayed alot for you and will continue..God Bless You!

    Ronda

    Leave a comment:

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