Still doing well bladder wise, but....

[ICLori]

I've done amazingly well for a couple of weeks now, not sure if it's due to the antibiotics I was given for some dental surgery or because the CyA is finally kicking in at this higher dose, but....

Was having my pre-op appointment today for the hydro/cysto on 7 Nov.

Anesthesiologist heard a heart murmur. So they are sending me for an echocardiogram to check for mitral valve prolapse.

It's not anything serious...but I have to wonder if it's some weird side effect of CyA or something...?

Blessings,
Lori
P.S. Found out the results of my second lab test for kidney function - came back 1.3 for creatinine which is what it's been running for me, so it looks like I can keep taking CyA at least!

[Kara29]

Lori!

I am so glad to hear that you had a few good weeks and that you are feeling well at the moment. No matter what the reason, I pray that you have continued relief for a long time! I bet you feel so good to have some time to yourself without the pain of IC. I am glad to hear that you can still take the CyA. I am crossing my fingers that this is it!!!!!

Love and Hugs!

Kara:angel:

[Trishann]

Lori, I am so happy to hear you are feeling better. I hope to this medicine is finally kicking in and hope it continue to give you relief. It is good to hear from you again.

Sending hugs, Trishann

[Bozema]

Lori-

So glad to hear you are doing well these days. Good luck on the 7th!

-Laurie

[KarenIC]

Hey Lori,

It's wonderful to hear that the CyA may finally be working for you and that you've been feeling much better!

I was diagnosed with mitral valve prolapse many years ago, and still wonder if there is any connection with IC.

Good luck with the hydro/cysto on Nov. 7th.


Take care,
Love,
Karen

[ICLori]

Thank you all so much!

Karen, I read somewhere that mitral valve prolapse (I was looking it up to learn more about it) is found more often in people with connective tissue disease....sometimes I think maybe IC is a connective tissue type of disease...hmmmm...

Blessings,
Lori

[Bozema]

Hi Lori-

My sister has mitral valve prolapse (and is also Type 1 diabetic). It is extremely common, so my guess is it's probably pretty hard to make any connections between it and other types of disorders.

-Laurie

[Kara29]

Lori,

I know of several people who have mitral valve prolapse, as well as having IC. Some of them just have IC and some of them have Fibromyalgia as well.

Sending you prayers and BIG HUGS!

Kara

[ICLori]

Thank you, Kara and Laurie! :)

Well, it turns out I don't have mitral valve prolapse after all...I have a small hole inside my heart, between two sections, and that is what was causing the funny noise. I don't know exactly what that means because the doc hasn't talked to me yet, (don't even know if one will?) but I'm off to look it up on the internet, LOL....

I figure it's not serious, because if it were, I'd be dead already.

Blessings,
Lori

[ICLori]

It's called Ventricular Septal Defect (VSD) and I'm going to have to talk to a doctor about it I think, because it can range from "no problem" to "big problem and you die young" and I really really need to know which one I have.

Blessings,
Lori

[KarenIC]

Hey Lori,

You are in my thoughts and prayers (as always). Please let us know as soon as you talk with your doctor about how serious your VSD is. I'm praying that it's an extremely mild case. Sending hugs your way....

Love,
Karen

[Bozema]

Hi Lori-

Do keep us posted on what your doctor says. Finding out things like that is always scary. In the meantime, till you can talk to the doc, I'd stick with your original thought - if it was a big thing, you'd have known about it by now.

I'll keep you in my thoughts and prayers.

-Laurie

[ICLori]

Thank you both so much! :) Well, I know for certain I do have a hole in the heart (VSD.) I know that no matter what size it is, it means I am at increased risk for stroke, and will have to take antibiotics before dental surgery and some other surgeries. In fact, for this hydro/cysto, they will be putting Gentamycin in my IV.

What I don't know yet (no doctor has called me yet with results) is exactly how big the hole is, or whether or not it has caused any damage to the right-hand side of my heart, or pulmonary hypertension....those are kind of the biggest worries really with this. My hubby said if the doctor doesn't call this weekend, he is going to go looking for someone on Monday to find out what the heck the results are and what this means to me in terms of what I need to do from here on out (other tests, lifestyle changes, surgery, ???)

Thank you all so much. I know I will be okay - heck, even if I have open-heart surgery, that will be a breeze compared to IC, am I right girls? LOL!

Blessings,
Lori

[Kara29]

Lori,:angel:

My prayers and thoughs are with you! I pray that it's nothing really serious and they can figure out what you need to do next.

Prayers and HUGS!!!!!!!!!!!!! :pray:

Kara:angel:

[Stacey65]

When my daughter was born she had ASD and VSD. She had open heart surgery when she was 8 days old. One hole was tiny and they were able to sew it shut, the other was bigger and they put a patch on it. Every year she has an EKG and an Echocardiogram and every year everything looks good. She has to have an antibiotic before she goes to the dentist to have her teeth cleaned. It's incase she swallows some of the stuff the dentist cleans off of her teeth, it could have bacteria on it and cause an infection in her heart, but like I said she doesn't have any problems and she's 8 years old now.

[ICLori]

Thank you, Kara and Stacey! Kara, you are so sweet to care about people even when you are hurting so bad.

Stacey, boy that must have been scary for you when your daughter had surgery! I can't imagine! Thank goodness she came through it fine and is fine today too!

I guess I'm just kind of...well, I don't like not knowing stuff. For instance, the tech told me (they aren't supposed to tell you, she was being nice to me) that I had just a small VSD. So I'm thinking, okay, if it's really small, maybe they will just leave it alone and not do surgery, and tell me to take antibiotics or maybe also an aspirin a day (because when the hole is left open, a person is at increased risk of strokes - because blood can kind of "clump" inside the edges of the hole and then make a clot, then that clot can go wreak havoc in the brain, lungs, etc.)

And if they tell me that, that's cool.

But I've been reading that sometimes they do want to do surgery (open-heart surgery) to close the hole. It kind of depends on if my hole is really really tiny or if it's more kind of on the large side of small. Which of course I don't know because I haven't gotten the results yet from a doctor. And the open-heart surgery sounds a little scary!

And the other worry I have, is that if the hole isn't really teeny-tiny, it's possible that it having been left undiscovered so very long, might have caused cumulative damage in the form of pulmonary hypertension, or in the form of making the right side of my heart overworked and weaker than it should be. That's part of the reason they really do tend to want to close even the small holes when they are discovered in children/infants. Although I have read that sometimes they do wait and see a couple of years to see if the hole will close on its own. In adults, if the hole is discovered then, I guess it won't close, because the heart is already finished growing.

I know that I really shouldn't be worried, I'm sure everything will be fine, but I'm kind of hoping I might find out more information from a doctor on Monday or on Tuesday, the day of my cysto/hydro.

I keep wondering, why did every other doctor who has listened to my heart miss that? I am sure I must have seen at least a hundred doctors in the course of my lifetime (moving all the time, military doctors, etc.) and most of them listened to my heart. How come it took this long for a doctor to notice something that supposedly I was born with?

Blessings,
Lori

[Stacey65]

I keep wondering, why did every other doctor who has listened to my heart miss that? I am sure I must have seen at least a hundred doctors in the course of my lifetime (moving all the time, military doctors, etc.) and most of them listened to my heart. How come it took this long for a doctor to notice something that supposedly I was born with?

Blessings,
Lori

In my daughter's case they could only hear it in her back, they didn't notice it at the hospital when she was born, they noticed it when she had her 1st check up at the doctor's after I brought her home.

[ICLori]

Thanks, Stacey.

Boy, I'm amazed that I'm still doing very well bladder-wise. I mean, way way way better than usual. Not quite a remission - still need Ultram about every
3rd or 4th night - but that sure is better than needing it every night and often having pain during the day, too.

Blessings,
Lori

[Bozema]

Lori -

Thinking about you today. I hope the cysto went well. Post when you can and let us know how you're doing.

I'm off for my consult tomorrow in SF - will report when I get back.

-Laurie

[KarenIC]

Hi Lori,

I'm thinking of you and hope that the hydro-cysto went very well for you.
Let us know how your're doing (when you feel up to it).
Take care.

Love,
Karen

[ICLori]

Hi, Karen and Laurie, thank you both so much for your warm wishes for my procedure!

Laurie, I hope that your consult goes very well in SF - I hope that this will be the start of you getting your life back, pain-free.

Whew, I am so behind on reading the posts on the boards - I feel so guilty - I've had company and I've just been so busy, between the company and then the hydro/cysto! Yesterday I was just so tired, I slept all day long, got up for an hour and ate, then slept again, LOL.

Well, I got very good news! First, I learned that I do NOT have a hole in my heart. The technician was mistaken. I have learned my lesson - wait for the doctor to tell you, and don't listen when a tech tells you!

Second, the physical findings during the cysto confirmed what I have been feeling these past three weeks - my bladder IS improving, and has already improved by a great deal, compared to my last hydro/cysto! So perhaps the CyA is working for me! The doctor found that my bladder held 700cc (up from only 500cc before, which I guess means my bladder is less inflammed) and the glomerulations were seen only on one wall of the bladder.

There were very tiny ulcers (only the size of a dot) in one section of my bladder, so I am not 100% there yet, but everything is much improved over the last cysto/hydro two years ago.

My doctor and I were very pleased at the findings. I am hoping that I might continue to improve on the CyA.

I have no bladder irritation today - and that is unusual for me, following a cysto/hydro. Usually I have increased symptoms for about a week. Not this time. Another sign that my bladder is healing.

If another month goes by and I am still doing as well or even better, I will update my signature about CyA. I don't want to change it too soon, I've made that mistake before...

Blessings,
Lori

[SharonA]

:woohoo: I am so happy for you. Doing a very Happy Dance for you. :dance: :dance: :dance:

[KarenIC]

Hi Lori,

What great news! I'm so relieved and happy to hear that you don't have VSD. On top of this, how wonderful it is that your bladder has improved so much. I just know you're on your way to total remission very soon!

I know you must be so relieved and happy too!

Take care,

Love,
Karen

[ICLori]

Thank you, Karen and Sharon! I really feel I am well on my way to complete remission, too!

Normally after a hydro/cysto, my bladder is pretty uncomfortable for about a week. Well, here I am, right after a hydro/cysto, and my period besides, and I don't need any pain meds! Wow!

Just hoping my kidneys hold up under the CyA. That's the other thing...

Blessings,
Hoping that everyone can find their miracle,

Lori

[ICFRN]

I have a friend who had a VSD (she happens to have IC too). She had a surgery last year to repair it and is now doing fine.

I wish you good luck!!!!!

[Bozema]

Lori-

HOORAY!!!!!! Great news for you - I am so happy for you. Nothing but happy and exciting news for you on all fronts. I'm so happy to hear things are finally going your way. Goodness knows you deserve it. Perhaps you are on your way to getting your life back.

Good news for me too. I went to SF - Dr. Weiss feels I can fully recover with intensive physical therapy, which I intend to begin again soon. It make take some time, but he believes I can get there - and my goal of full recovery is within my reach. He agreed that I may not necessarily have IC but have a pelvic floor dysfunction problem brought on by last year's pelvic survery and severe stress and as a result, cyclosprorine is not the right drug for me. That explains my lack of progress with the drug. That said, I'm not sorry for being part of the grand experiment. My lack of progress helped shape the conclusions we reached. And if I don't have IC, the fact that I didn't respond doesn't take away from the fact that it may work for lots of people who do have IC.

He is very PT oriented and I get the impression from my discussion with him that he feels that many if not most IC patients can benefit from physical therapy. His impresssion is that most doctors focus on organs and not on the surrounding muscles and nerves which become inflamed and result in many of the worst symptoms. Something for everyone with IC to consider - you may need to focus on the bladder AND the surrounding pelvic floor muscles and nerves to feel better. But it does take time and sometimes PT is not comfortable - but in the long term it does help greatly. Anyway, I am very hopeful since PT worked well for me in the past and a more directed approach to it with Dr. Weiss' guidance I think will help me greatly.

In the meantime, I'm not having much problem with pain these day despite that I'm pushing the envelope in terms of activity. I've been feeling good and the trip to SF was tiring (as traveling always is) but otherwise not difficult for me. It means I feel I can travel more and that is good news too. I have been working out and my blood pressure has gone back down. I do have a nasty cough I can't shake and think I have a bit of bronchitis. Saw the primary care doc last week and will go back again in the morning. But compared to everything else, a little cough is a walk in the park. I feel like I'm getting my life back and feel happier than I have in 2 years.

So hooray for both of us!!!!!

-Laurie

[Shehorst]

Lori,

I haven't been on the boards for a long time - you have been through a lot this year. I am glad to hear that you are doing well on the cyclosprorine. It's encouraging because it opens up a new option for all of us. In any event, I am excited for you and the news of relief for your bladder.

Sherry

:cat:

[ICLori]

Thank you, Laurie and Sherry!

Laurie, I am really keeping my fingers crossed for you that the PT will soon have you back in complete remission! I agree that a very large percentage of IC'ers have PFD in addition to, or sometimes instead of, IC....never hurts to be checked for that! I was checked and didn't have PFD...just those little ulcers in my bladder that were wreaking havoc with me...

I am continuing to do very well on CyA and I am starting to think more and more that this might be the drug that will work for me. I haven't needed pain meds in about a week and a half.

Blessings,
Lori
P.S. Bronchitis - you poor thing! I hate having that. I can never lie down to sleep when I have that because I start coughing! Hope you get better very soon!

[Kara29]

Lori!!!!!!!!
I Hope this is IT!!!!!!!!!!


I am still praying for you!


Kara:angel:

[melanie626]

I am thinking of cyclosporin after i have babies.....what doses are people taking? I feel it is promising. Any side effects any are experiencing.

[ICLori]

Thank you, Kara!

Melanie, there are some posts about Cyclosporine-A in the section on Cyclosporine-A. There is one post in particular that has all the potential side effects, and if you want to look at our previous posts, it contains doseage information.

I wouldn't recommend trying Cyclosporine-A unless every other medicine you have tried, has failed you.

Blessings,
Lori

[Bozema]

Melanie-

ICLori is right there is a lot of information about cyclosporine on these threads so you may want to cruise our previous posts.

In answer to your direct question, I was taking 300 mg per day and I believe Lori was taking 200 mg. I recently discontinued it since it did not appear to be working for me and I was having problems with rising blood pressure and a series of small infections. This is part of the reason the doctors are thinking I may not have IC but PFD only - though there are other reasons for that thinking as well.

-Laurie

[kimberlyJB]

So how do you get your doctor to recommend this or is this only available in trials?

[Bozema]

Hi Lori-

Just checking to see how you're doing these days. Kristin - are you still out there? How's it going?

I'm am doing pretty well. My flares seem under control these days and I am working out a little more all the time. Still thinking that my issue is PFD only and may be starting physical therapy again soon - working out the details.

Happy Thanksgiving to you both.

-Laurie

[ICLori]

Hi, Laurie, I'm glad you are doing better, and I hope you will be in remission soon from the physical therapy! :) PFD is a whole lot more treatable usually than IC, so I am very hopeful for you!

Happy Thanksgiving to you, too - or, I mean, I hope you had a happy one!

I'm actually in remission at this point - don't need any pain meds whatsoever, and am doing just fine. Cyclosporine-A seems to be working well for me at this point.

Kimberly, your doctor might put you on Cyclosporine-A if you have already tried all of the standard IC drugs and failed on them, and if your symptoms are severe and on a daily basis rather than sporadic.

My doctor let me try CyA because I had tried a very very very long list of treatments for IC, and none of them worked for me, or didn't work long. I had pain every single day, and my pain was not very well managed with pain meds because my bladder would flare from the pain meds. So I was in a very bad position.

CyA is a somewhat risky drug, although researchers declare it is safe. Because I am on CyA, I am at a slightly increased risk of cancer, and I have to get a flu shot this year because I am considered immunocompromised, since CyA is a drug that partially shuts down the immune system.

If you are curious about CyA, look through all the posts in this section....especially the ones pertaining to the studies on CyA - and it never hurts to print them out and take them to your doctor to ask if this treatment would be appropriate for you at this point or not.

Blessings,
Lori