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

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

    I'm so grateful, I've finally been granted a referral (TRICARE actually approved it, must have been a great write up for the justification!) to go to the Cleveland Clinic to see some of the top IC specialists in the whole country!

    I feel soooo lucky right now. If anyone can help my refractory case of IC, they can! I will be seeing Dr. Rackley (sp?) initially, and I have heard he is really great and also really nice. I'm so excited! I will share anything I learn new about IC with you guys, I'm hoping maybe there are some new experimental treatments or something.

    I just feel so leery of staying on the Cyclosporine-A now because of my kidney thing. I was told by one doctor that if I stayed on the CyA, my kidneys would die, period. That doesn't sound very good. So....maybe it would be best for me to try to seek another type of treatment. It's hard to give up the CyA because it's the only thing that's helped me, but if my kidneys can't handle it, I know in my heart that I'm being foolish to stay on it.

    Plus I have a really great pain management doctor (civilian) and he seems very willing to help me with the pain, even up to the point of prescribing opioids if needed, etc. So I feel confident that no matter what happens, I will be able to maintain a reasonable level of comfort most of the time.

    Oh, and I've been granted the ability to see civilian providers using TRICARE Prime (usually if you go to civilians, you have to choose TRICARE Standard, which means $1,000 a year or sometimes more out of pocket expenses) and I am so relieved and grateful to be given that opportunity. So, I will be finding a primary care manager to start with, and then from there, I probably will need to see an endocrinologist (I was just diagnosed as hypothyroid) and maybe a nephrologist, depends on if the primary care manager feels comfortable ordering labs for me and monitoring my kidneys or not.

    Although I've had a lot of great doctors in the military healthcare system, and the doctors all work very hard in the military, I find that many of them are often right out of medical school, without too many years of experience behind them. Sometimes it's beneficial to be able to see a doctor who has had decades of experience and learning, especially if a person has a very complicated disease, like IC that doesn't respond to standard treatments. So anyway I'm just thrilled!

    I'm also so grateful for everyone here. This is a family here, it really is. Everyone here is such a kind and caring person, it's really the most wonderful place on the whole internet. I'm so glad the boards are here, I'm grateful for Jill and the rest of the management team/moderators etc. who keep these boards here and safe and who work every day to make things better for us.

    P.S. Oh, it's not that I'm grateful for this bit of info, LOL, but the uro who gave me the referral to the Cleveland Clinic looked at my bladder photos yesterday of my last cysto/hydro and he said I have a Hunner's Ulcer! So I sure do fit all the criteria for having IC! I guess I pretty much have a classic case.

  • #2
    OH how great Lori, I so hope this is the lucky card you have been waiting for. Good luck with this and also the civilian dr. as well. You deserve this


    • #3
      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!


      ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!

      Link to Patient Handbook:

      Diet Reference Sheet:

      Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring

      Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure

      Meds I have Tried:
      Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
      Lexapro< Bad reaction to this med!
      Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..

      Dx With IC in Nov 2006 with Hydro/Cysto
      Hydro/Cysto Caused Bladder to Rupture.

      Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.

      ICN Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.


      • #4
        Oh this is great Lori!!! Surely you'll get some real help from these IC specialists!! I'm so happy for you!


        • #5
          *Thumbs up* Lori.

          Shopping??? Did someone mention shopping? I'll get my hat... ;-)

          Where I can be found most days.

          Link to the ICN Patient Handbook:

          Link to the IC Diet:

          IC Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.


          • #6
            Cleveland Clinic

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


            • #7
              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.

              Ulcerative Colitis and IBS
              Pelvic Floor Dysfunction

              Retirement is great! Work is highly overrated!!!
              ---My dear hubby

              Never go to a doctor whose office plants are dead.


              • #8
                :woohoo: If anyone deserves a bit of good fortune right now, it's you. How odd -- sometimes life is fair!
                Je vous souhaite de la joie, de la bonne santée, et tout ce qu'il y a de bon dans la vie.
                Wishing you happiness and good health, and all the best out of life.

                Peace, Carolyn

                Laura (11), Susannah (12 1/2) and Maman (that's me!), North Wildwood NJ, September 2007

                On the Beach with IC


                • #9
                  Hi Lori,

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



                  • #10
                    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.



                    • #11
                      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
                      Blessings and Hope

                      Current Meds.
                      OFF MY MEDS
                      Vivelle Dot: .10 changed every 72 hours
                      Compoounded Progesterone 25mg/night

                      Current Supplements
                      Hydroeye: 2 pills AM

                      1995: Endometriosis
                      1998: Interstitial Cystitis
                      2006: Bladder Endometriosis, Total Hysterectomy and Bowel Re-Section
                      2008: Removal of Ovarian Remnant and Endometrial Cyst That was Obstructing Ureter
                      2012: Laparoscopic Removal of Adhesions and Staples


                      • #12
                        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


                        • #13
                          Hey, that is great news! :woohoo:


                          • #14
                            :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!



                            • #15
                              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.

                              Serenity isn't freedom from the's peace within the storm.....I had my sick bladder removed Jan 7th 2010.....Even though I had many complications.......I would do it again in a moment.....I have no regrets......Sunflowers in memory of my sister who passed March 14th 2010......they were her favorite....