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I can't handle this or too much more

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  • I can't handle this or too much more

    Ok I am sitting here crying. I have broke and really just can't handle any more. My mom has went into stage 4 kidney failure. Her GFR's should be 90. Last month ago they were 39 now they are 26. The nurse told her they cannot give her the results of her kidney ultra sound because it is not normal.
    please say a prayer that my mom don't die. I really can't handle that.
    'The will of God will never take you where the Grace of God will not protect you.'

  • #2


    • #3
      Oh no Cindy! I'm so sorry! ((((((((((((((Cindy)))))))))))))) I will have you and your mom in my thoughts and prayers!

      I have been diagnoised for 6 1/2 years now. I have taken a long break from the ICN but really miss helping out my fellow IC patients and want to get back into posting.
      1st hydro 4/07 showed no visible signs of IC but tons of mast cells in all my biopsy samples which did prove IC.
      2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. This hydro proved that my IC had progressed.
      I have tried every oral medication as well as rescue instills and DMSO.

      I have been lucky enough to see Dr Hanno, the top IC specialist in PA who has told me due to the fact that I have not responded to any "standard" treatments that I have a severe, end stage case of IC with a horrible quality of life (didn't have to tell me that last part!)

      Proud wifey of Shane, mommy to Griffin, and step-mom to Logan and Gage
      Also proud mom to the best Bullmastiff on earth, Claus


      • #4
        So sorry Cindy... My thoughts and prayers are with you and your mom..((((((((hugs)))))))))))

        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.


        • #5
          I'm so sorry. I'll keep you and your Mom in my prayers. I wish I could do something to help. Please let me know if there's anything I can do, like look up some information or research type of thing or just anything that might help.



          • #6
            Truly sorry for this news. Good thoughts and strength are sent your way. Sue


            • #7
              Cindy I am so sorry to hear about your Mom. Thoughts and prayers are with her and for you.

              Sending hugs, Trishann


              • #8
                So sorry...

                you are going through so much. I'll be praying for your family and your Mom. I'll pray for God's unending peace to hold you close during this difficult time.


                -Bladder surgery to correct reflux-'68
                -Terribly painful periods, beg.@ 13 (most likely due to endometriosis, no dx then)
                -4 gyn surgeries since 2003 to remove cysts, ovaries, endometriosis and uterus
                -DX'd w/I.C. before 3rd gyn surgery, but sure I've had it since childhood
                -Gastrointestinal allergies to nuts and shellfish - {I would like to know if there is some connection of gastro allergies to I.C.?}
                PTSD (sexual abuse by teenage boy when I was 4 and s. abuse by adult male who was friend of my Dad's - my parents still don't know)
                -DX'd with IBS in 2000
                -Rhabdomyolysis in 2001 (has not returned)
                -DX'd with Eosinophilic Esophagitis (Asthma of the Esophagus) 3/07
                -DX'd with TMJ in 2000-wear splint
                -Hydrodistention and Cystoscopy w/ biopsy of tissue in bladder-2003
                -DX'd with Epilepsy -2000
                -SSS (Selective Sound Sensitivity)-wear earplugs most of the time to screen out certain noises
                -DX'd with Fibromyalgia (2006)

                Medications:MS Contin-30mg@3xday,Hydrocodone-10/650:up to 4day,Levothyroxine,Soma,Clonazepam,Vesicare,Keppra (anti-seizure),Flovent FHA 220mcg (swallowed for E.E.),Elmiron,Instillations-5+per week for flares,Lidocaine,Cysta-Q,Prelief, Dulcolax,Baby Aspirin(for FM),God blessed me w/2 boys: Devin-14 and Logan-9, Jim, my husband of 18+ years who sort of understands what I.C. is...still working on educating him!, my springer spaniel "Wookie" ('cause he makes sounds like 'Chewbacca' from "Star Wars" when my son plays with him) and the most important 'medicine' of all...PRAYER...because ONLY God knows the answer to why we are all going through this awful I.C.!


                • #9
                  I'm sending warm hugs and prayers your way.

                  Stay safe

                  Elmiron Eye Disease Information Center -
                  Elmiron Eye Disease Fact Sheet (Downloadable) -

                  Have you checked the ICN Shop?
                  Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

                  Patient Help:


                  Diet list:

                  AUA Guidelines:

                  I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

                  Anyone who says something is foolproof hasn't met a determined fool


                  • #10
                    hi, my moms doctor called her, she is scheduled to go to the diabetics specialist on the 19th, They are changing some of her meds, so they don't process thru the liver. He don't want to do any thing right know until they get othter things under control, and that may make her levels become more stable. I have no idea what I am talking about, and don't even know if it makes since. I told her she needed to seek a 2nd opinion, but she cannot afford another 200.00 office visit right now. When she called me earlier I was just so upset. I still am but, hopefully the doctor knows what he is doing.. you know there really just not on my list of good people..

                    THANK YOU
                    'The will of God will never take you where the Grace of God will not protect you.'


                    • #11
                      I found out just how hard it is dealing with a sick parent. I never realize just how heart wrenching it is on a child. For me watching my dad go down hill was just about the worst thing, and I also thought I could not handle it...But you know what we are stronger than what we think. I personally blame a certain hospital he was going to (he had a heart attack 14 years ago and had not had a stress test in 10 yrs) for letting my dad get into the shape he was. So I understand the doctor part to.

                      I will for sure keep your mom in my prayers. With all on your plate I am sure you cant handle much more. But you are strong and please remember that!!(((((HUGS))))
                      God grant me the serinity to withstand the days ahead!!!

                      My myspace link...


                      In Memory of My Father (Lawerence) 1/25/2007

                      Interstim Sept 2001
                      1st InterStim Removal May 2005
                      2nd Interstim Implanted May 2005
                      2nd InterStim Removed March 2007
                      Hysterectomy 1999
                      Tubes Tied 1997
                      C-Section 1996

                      Me and my kids

                      Taylor (my daughter) Me and my daughter My son Cody and Taylor


                      • #12
                        Sending prayers and hugs your way. and


                        • #13
                          You're in my thoughts. I will be thinking of you and your mom. ((hugs))


                          • #14
                            Hope things go well with the next appointment.


                            • #15
                              I think that might be a break in the clouds, the adjusting of the meds I think, because I was just thinking, what if it's like the CyA was with me, where when I changed (lowered the dose) my kidneys got way better?

                              A lot of times meds have a really bad impact on the kidneys, and it kind of varies from person to person how their kidneys react.

                              For example, my GFR was 16 when my kidneys were at their worst from the CyA. Now they are working at about 30% (GFR of 30) so that's a lot better.

                              Remember how IMUSTPEE went into renal failure, her kidneys shut down entirely? Now she's okay again. A lot of times once meds are adjusted and so on the kidneys can bounce back either completely or at least somewhat. So I'm hoping that will be the case with your Mom. I know it's more complicated than that, but a lot of times when kidneys are in distress, at least a part of that distress is reversible once changes are made. So I'm still holding out hope for your Mom that she won't have to face dialysis real soon or anything!

                              Dialysis is definitely not a fun thing, for sure, but I was so encouraged when I read those boards and messages and stuff from people who were on dialysis and facing transplants. Some of them had just started dialysis so they talked about adjusting and the new experiences, and others were old-timers. I was impressed by how every single one of them said life is still worth living, and that once you get used to everything, it's not really so awful. I didn't read one person saying dark thoughts - you know, like how sometimes some of us wonder how we can hang on any longer with this disease - no one was saying that in those groups, out of hundreds of messages. So that made me think that, yeah, okay, it's bad, but maybe it's something a person could learn to live with, maybe there would still be some happiness in life anyways. A lot of them were still working even. A lot of them were using those at-home machines that removed the wastes while they slept. So they felt like their lives hadn't even changed all that much, they were still able to do what they wanted to.

                              But hopefully your Mom won't have to face that dialysis thing. Let's keep our fingers crossed and hope for the best and pray a lot! I know it's hard and it's scary. I'm hoping God will watch over you and your Mom now.