I'm going to ask my doc about CyA

[catlover2]

I do not want to take away any of your prayers for ICLori right now. After spending a lot of time talking to her and considering my options, I have decided to ask my doc about starting Cyclosporine-A. I understand the risks but I have no quality of life and I don’t want to give up my dream of going to medical school.
Many factors affected my decision. I started my fourth semester of college last week after deciding against taking a semester off. I always tell all of my professors about my medical conditions and disabilities. One of my professors had the nerve to tell me that I didn’t look sick so I must not be disabled or in pain. When I wrote my final paper for composition last semester, my professor cried when I read it to the class. I wrote about my medical journey during the past year and a half. I used my experienced as a teen with severe IC to convince my professor that IC needs to be diagnosed and treated in adolescents. I don’t know which is worse- having a professor tell you she thinks you are lying or making your professor cry.
I have tried all of the conventional treatments. The only options left are CyA, Botox, Cytotec, and the Neobladder operation. I decided that I can’t go on staying on bed for most of the day. I need to come off of most of my meds. I am a zombie; I occasionally can’t remember my name. I two medications for every year I am old. That is just plain ridiculous. I don’t like when people refer to me as a seventy year old woman because of my number of conditions and medications.
I realize that I have a rare gift and I just can’t let it go to waste. I am a child genius. Why on Earth would I be blessed with great knowledge, yet I have to suffer in silence from the pain everyday? I’m not ready to give up. I’m going to beat IC.
I think I have figured out why God created me. He made me smart but he gave me IC so that I would know what it is like to be disabled and need help. Even if I do have to give up my dream of going to medical school, I will find a way to help other IC patients. Maybe I won’t be able to find a cure for IC; maybe I’m destined to become a patient advocate.
Asking my doc about starting the CyA is just another milestone in my very long journey to feel better. I have vowed that I won’t give up. I will keep trying every known treatment for IC until I find one that works for me.

Mary

[ICLori]

Mary, I totally understand your decision. Even if I had read a similar post to my recent kidney posts, I still would have gone forward, because I had no other choice (really I didn't feel I did.) I sense that you also have that same feeling.

Sometimes you just get pressed against the wall, and nothing is left except really lousy choices, and you have to pick which lousy choice seems best.

I'm keeping my fingers crossed for you and wish you the best of luck.

Blessings,
Lori

[catlover2]

Thanks for your support. I hope that your kidney damage is reversible.

[Georgia L]

Mary
I can so sympathize with your frustration. I have had college professors and principals (I teach school) to tell me the same things... shucks my own family members and husband have said that I don't look like I am in pain... well I like what another member here said... it is like we have a broken bladder and if others could see that like a broken leg then maybe they could understand.
I will keep you in my prayers! Do not give up on your dreams!
I am looking into other medications and I have an interstim trial scheduled. I have had to take a medical leave from teaching due to the pain and the zombie feelings too.
Keep your faith! We will be free from this pain someday...some way!
God will make a way
when there seems to be no way
He works in ways
we cannot see
(tell yourself) HE WILL MAKE A CHANGE IN ME!
God Bless
Georgia L

[ICLori]

Mary, I hope that everything turns out okay for you, and that you will be free of IC symptoms soon.

My kidneys are getting better, BTW. I'm finally back in stage 3 now (only moderate kidney disease instead of severe!) My GFR is 32 which is much better than what it started out as (16).

Blessings,
Lori

[catlover2]

I'm going to try Botox next. The Botox will be injected into my bladder and pelvic floor muscles. My surgery date is March 21. I hope the Botox works if it doesn't I have a very difficult decision to make. I will have to decide between bladder removal or trying some of the other experimental therapies like CyA.

[ICLori]

Wonderful! I am so glad you are trying the Botox first. It seems much less risky than CyA or bladder removal!

Whatever decision you make, if the botox doesn't work (I think it will), we will support you 100%!

Blessings,
Lori

[mayray518]

If I heard one more time well "you look great you dont look sick" what does chronic pain look like? I am glad you answered your professor back and expressed what you had been through. I used to carry around my story on this site and whenever anyone made a snide remark i would give it to them to read. there are many chronic problems that dont cause anyone to look different in excusable response, let them spend a day of what we have been through.

[ngazerro]

Mary,

Good luck and I hope everything works out for you!:pray:

[catlover2]

It has been a long six weeks since I began planning the Botox injections. Nothing has gone well; I spend hours on the phone everyday trying to get the details correct. My doctor's office won't return my phone calls. My specialty pharmacy called me last night questioning the competency of my doctor. Apparently, I'm not the only one who thinks his nurse is an idiot. She told my pharmacy that Botox injections last for one day. I'm not kidding. I told my patient representative that this nurse knows nothing about IC and she has no idea how Botox works. My patient representative recognized the frustration in my voice so she called my doctor's office back to clear up the misunderstanding. My doctor's office did call today to tell me that I was being too demanding by expecting them to return my phone calls. :loco: What? A doctor's office really has to return patient phone calls? Since when?
Yes, I am your worst nightmare when you lie to me about fixing a problem with my surgery. I will make the time to leave you a dozen messages in one day just to dive you nuts. The pain, frequency, urgency and pressure drive me nuts so adding to my stress is not a good idea. I still offer anyone the opportunity to trade bladders with me anytime, anywhere. Just let me know if you want to take me up on my offer.
Anyway... My doctor's office still has the surgery scheduled as an outpatient procedure instead of an inpatient surgery. I live seven hours from the hospital in the middle of nowhere. There is a small, rural hospital here. They will not be able to handle any complications from the Botox. I have had problems with general anesthesia before so I want epidural anesthesia. However, my doctor's nurse still hasn't fixed that problem either.
I called the hospital this afternoon to schedule my pre-op. The lady from the hospital told me that I even though the surgery is three days before my 18th birthday, my parents will still be required to sign my consent forms because I'm apparently such a moron that I can't make my own decisions. I know that federal laws prevent kids under the age of 18 from giving consent, but I am a special case. I am considered a mature minor because of my intelligence level. I am 17 and in my second year of college. I am a pre-med major studying neuroscience and biomedical engineering. I guarantee you that my IQ is a lot higher than hers is. The woman from the hospital also said that none of my wishes, like my request for epidural anesthesia, would be honored because I'm not 18. I felt like telling this woman that I have been through more tests and procedures in the last year and a half than she will ever go through in her lifetime. I glow in the dark from the CT scans and the MRI’s. I know what a spinal tap feels like. I have had genetic tests done. I also volunteer in the surgery department at the local Veteran’s hospital so I am well educated about what I want.
I'm a fuming mad IC patient in a horrible flare. Now would not be a good time to mess with me. I reserve the right to be cranky, grouchy, or down right mean and rude when I feel like my wishes are not being honored. :evilsmile

[dianna_rose]

Mary,
You go girl!! Keep us posted on your progress (I'm sure you will). I will be praying for you. I was also a teen genius--boy does THAT sound narcissistic! And I have been fighting physical stuff all my life, LISTENING to health care providers who kept telling me I was weak or it was all in my head till I finally gave up and quit college. Stress was always a big trigger, but fear was a close second. Don't give up on your dreams, sounds like you've got a big handle on what you want in life. Big things are accomplished by people with who have big dreams. Actually, it's more like a strategy, isn't it? Especially living with IC. (BTW I was published in a pharmacological journal while still in college, studying patient compliance, of all things. I also wrote about cosmetic pharmacology. ) You sound like a wonderful gal. Looking forward to your next post!
Blessings,
Dianna

[catlover2]

I have five days until the Botox injections and nine days until my 18th birthday. All I want for my birthday is some relief. I've had IC for less than a year and it is already driving me nuts. I hope the Botox works; if it doesn't I think Cyclosporine is next.

[dianna_rose]

Happy early birthday, Mary! and best wishes with the Botox!
Blessings,
Dianna

[catlover2]

Just thought I would give you guys an update. I have decided to go see Dr. Evans. I have an appointment to see him on May 17. It is a seven hour drive so I will have to leave on the 16. He will be my 6th uro/urogyn is less than 10 months. I’m hesitant to see a male doc after what happened with the Botox injections. I hate pelvic exams because they hurt and now I dread them because I’m afraid the doc will keep going even if I ask him to stop. I’ve had a lot of problems with trying to get pain meds. Nobody takes me seriously when I say I need something stronger. I can’t find a pain management clinic willing to treat a teen IC patient. I’m ready to try an immunosuppressant. I don’t care if it is CellCept or CyA. Now I just have to find a doc willing to prescribe CellCept or CyA. I can find docs willing to remove my bladder but I’m not ready to take that route yet.
Does anybody know if Dr. Evans is willing to try CyA or CellCept? Does he do pain management?

[kadi]

Link to an article on making pelvic exams easier. (Only thing I'm not sure about in it is the taking Pyridium beforehand -- check with your doctor first to make sure it doesn't goof up any test results.)

http://www.ichelp.org/FeatureArticles/MakingPelvicExamsEasier.html

I understand about the hesitancy in going to another male doctor after having trouble with your last doctor. Honestly though, either gender can be a lousy doctor or a good one. The thing with IC treatment is that it often means having to search out the right treatment team for you. And you will encounter doctors & nurses who just don't get it (and seem like they'd rather not learn) and you will find some amazing professionals who will work with you for your health. Those are the keepers!