Interstim is working

[rachelm]

I haven't posted on my progress in a while so I thought I would update those of you who were supporting me through the process. I've had my implant since April 22 and I've begun to get my life back again. So far my retention is gone completely and I was having to cath 75%-100% of the time. I'm also having the benefit of reduction in pelvic pain caused from the constant spasms in my bladder. This was an added bonus! I've still had to take some pain meds. during a flare last week but after about a week the hip pain went away again and I was able to go for a week without anything.

Unfortunately I did get a UTI this week probably due to added activities in the bedroom that had been eliminated for quite some time. My incision started looking like it might be infected a week ago so I went back on a long course of another antibiodic so now I'm on 2 different ones. Oh well. I went for 2 months without one which was really good for me as I frequently get recurring UTI's. I'm going back on a low dose antibiodic for awhile when this infection is gone. I guess this is teaching me that even with my interstim I'm still going to have to watch what I eat, and deal with flares as they come. I've been able to work though which is a big difference! Before my interstim this year I had missed over 25 days in 10 months and 20 days last school year. I'm hoping that this will help me next year when the winter hits which seems to be my worst IC season.

I'm concentrating on getting the final plans for my wedding underway and am looking forward to some time off work so I can rest up for the big event. I'm getting married at the end of June. I'm a little worried about going through the airport for the honeymoon so any advice from others with the implant would be welcomed.

I'm certainly learning patients through my experience with my IC treatment and I'm thankful for every day that I feel better. I don't take those days for granted and I don't try to predict what tomorrow will bring. One day at a time!

Going through this while engaged has certainly shown me that we have a good foundation that will hopefully whether the storm of life. Brian has been there 100% to do EVERYTHING when I couldn't from laundry, housework, shopping, driving etc... you name it. He's even learned how to help relieve pelvic pressure through massage. He knows this is not a magical cure and there may still be ups and downs but he's here to support me in my triumphs as well as the hardships as we both live with IC.

Thanks for all the support that many of you gave to me while I agonized over the decision to do this and went through the process.

Rachel

[peiti]

Dear Rachel,

I am so happy for you and congradulations for the coming wedding. Please post your wedding pictures if you can. We would love to share your happiness.

As for the airport issue, please ask your rep to turn off the magnet. My rep told me she already turned off the magnet for me. That means I can't use the magent to turn on/off my stimulator. I have to use the bigger control device (the one that looks like a mouse) to do it. I went to Thailand in April and didn't have any problems at the airport.

Sending kisses to the bride.
:kiss:

[ICNDonna]

I'm glad you're doing well.

:)
Donna

[rachelm]

Peiti,
I remember my first rep telling me about that too. When I went in for the stage 2 I told my family and the nurses not to let them start until I asked the dr. or rep about turning it off. I asked my dr. and he said the device has a magnet in it that is controlled by the remote and that there was nothing for me to worry about. He acted as if he wasn't sure what I meant and normally I wouldn't just take any dr. word on something but he was so experienced with the device and so I didn't worry about it. When I came to after surgery I was really bummed because the rep there was the boss of the first one that had told me about turning off the magnet. He said there was nothing more to turn off and that the only thing I would need to control the device was my remote. I guess I was either just misunderstanding them or it was really already turned off. I think I remember the first rep telling me that they routinely turn off the magnets now. I may call him and double check before going on my trip. He gave me his cell phone and has been really good about answering my questions and giving me extra information. He said I was the first patient that asked for every manual on all the parts of the device but he gave them to me.

When you went through the airport did you go through the metal detector or did they pat you down? Someone told me of a friend that had a knee replacement with a card that explained the medical device and had an x-ray of the knee on it. I thought that was really cool! I guess I just need to know from my dr. if I need to turn it off or not and whether or not I can go through the detector safely. I've also heard of it giving a jolt when passing through one but maybe that's when the additional magnet is turned on.

Thanks for wishing me well! I will try to post some pictures when I get them. I'm hoping I start feeling better from this UTI soon because I'm swollen a bit and I have my bridal pictures this coming Fri. I was afraid my IC belly was going to be a problem when I went in for my last fitting but the dress still fit. I haven't had as much swelling in a while so I hope it goes back down again.

Thanks for all the support!:kiss:

Rachel

[icnm]

Rachel, when I had my 2 InterStims, I always bypassed the xray detectors at the airport. Even got to the place that I turned it off going through most security screens. I've spoken to several Stim patients who had their Stims working great until they went through a security device. Sometimes the reps tell you it is not necessary to turn the units off while going through a security device, but if I remember correctly, the Medtronic book states the device should be turned off during that time. It's a nuisance to continuously turn it off and on, but bettery safe than sorry. Also, did you receive a card from Medtronic....size of a credit card for you to carry that states you have an Implant? All you have to do is show that card to security and they allow you to bypass the system. So glad your InterStim is a success.

[Dixiefireball]

sorry about the uti but i'm thankful you found something that is helping you.:dance: :party:

[rachelm]

:party: Thanks for the advice. I love these dancing party smilies. So cute!

I do have the card from medtronic and I also requested a letter describing the location of the implant and what it's for on my dr. letterhead with his signature. Someone on the boards had done that and I thought the extra doccumentation might help. ICNm do you have the magnet turned on inside that you can manually turn off with the big magnet or do you just control it with your remote? I'm going to go on the conservative side just to be safe. I was concerned about turning it off because I thought I read somewhere that it can reset itself and mess up the programming. Lord knows that will put a kink in our honeymoon.

Brian's already feeling a bit uneasy just because I got a UTI and I'm hurting some. He's just so worried about me making it because he's been disappointed before. This morning when I told him I had a hard time sleeping from spasms he asked if it was still better than before the interstim. It was more like he was declaring that it was still better.... he said but it's not as bad as before the interstim right? I'm feeling a bit better with pyridium and I certainly know the drill with UTI's. Rhonda I know you understand too since you get those recurring UTI's as well. I'm going to stay on a low dose antibiodic again until a while after the honeymoon. I want to be o.k. and I've learned not to get too disappointed at the setbacks as much as I used to. I did answer Brian that yes even with the uti pain I am still much better than this spring before my interstim. Do any of you ever feel like you're letting people down when you aren't doing well? No matter how supportive he and my family are I still get discouraged and feel like I'm disappointing them when I'm flaring. I get over it though because there is nothing I can do about the rollercoasters of this disease and I know at least for me when it gets worse I know it will eventually get better again.

I'm not trying to invalidate the success of my interstim because it HAS given me my life back. I do want others to know that you will still have flares with it and you will still probably need other types of therapy such as drugs and pt ect. I also learned the hard way that I definitely can't just eat anything and not pay the price. It's doing all these things together that are helping me live my life again. I don't know if I'll ever have a "normal life" but it's at least livable now and I'm well enough to walk down the isle.

Thanks for all your support. Any others with implants that have good ideas for the airport please let me know.

Rachel

[peiti]

Rachel,

My rep told me my InterStim wouldn't be turned on/off or reset by the machines aroune me cause she had already turned off the magent for me. Actually, she didn't give me the magnet, only the remote control.

I went through the Xray detector once at the airport in my country and the other time was at Thailand's airport. I turned off my machine off using my remote when in Thailand because I didn't want to get into trouble in a place where I don't know their language. I did test if the Xray could detect the stimulator at my country's airport and I was safe. No one knew that I brought a metal onto the airplane (I don't even know if it is a metal or not). You really don't have to worry too much about it. Just relax and enjoy your new life. BTW, where are you going for honeymoon?

As to the UTI, I am very sorry about it. I hope you can get better soon. IC is really a puzzle, I know some IC patients also suffer from recurrent UTI and suspected the hidden bacteria might be the cause of the disease. For me, I only had one UTI before my IC onset and a course of antibiotics solved the problem.

I know how you feel about letting your family down when you are in a flare? Been there. I can understand my family's disappointment because they love me but don't know how to help me to feel better (I sometimes feel that from my doctor, too). I think your family are the same, too.
I got to go now, it is my bed time here. good luck.

[rachelm]

Peiti,

Thanks so much for the advice about the airport. I'm going to double check about the magnet with my Rep. Brian said he would let them know about my med. device when he called to confirm the reservations and find out what the airline needs me to do just to be safe. I'm probably obsessing but with the possibility of the security allert going back up to high orange this summer I want to be prepared for any delays that this might cause. It's not like we're flying half way around the world to Las Vegas so I'm sure it will be fine. Between waiting to see how I was doing before making plans and Brian's new job we decided to take an abbreviated 4 day honeymoon now and then hopefully next year some time we'll be able to take an Alaskan cruise. We've had to cancel vacations before because of hospital stays or flares so we just kind of hold our breath and hope it all works out. We actually just made the reservations this week for the end of June because of the uncertaintly.

I'm feeling much much better today after 4 days of anit-biodic for my UTI and I will stay on that low dose until after the wedding just to make sure I don't get another one. It's true about the different experiences with infection and so many other variables with IC. I have had UTI's since I was 4 and my theory is that over time they broke down my lining and now I have progressed to where it has interered with my life more and more over the last 4 years.

I'm glad that I woke up feeling rested today because it had been hard to sleep the night befoer so I was very tired. I had one of my big bridal showers today so it worked out well that I felt better. The hostesses wanted to make sure that I could eat some of the food so they asked my mom about my diet restrictions and had pears and blueberries and honeydew on a fruit tray and IC friendly little chicken sandwiches. I thought that was really nice of them.

I saw my mom's cousin today for the first time in several years and she said that we would have to compare stories about our bladder probs. Mom recalls her having really bad pelvic pain fo many years and then it got better some after childbirth. She said she is better after watching her diet. Her dr. hasn't diagnosed her with IC but chronic cystitis but it sounds like it's probably IC. She said she would call me later so we can chat. I've always wondered which family members had bladder problems that I didn't know about.

Thank you so much for your happy wishes for us as we get married. I really appreciate you answering all my posts over the last several months as I went through this process.

Rachel

[dyno]

Rachel,
I haven't been around much the last few days and just saw this. I am really glad you are getting some relief. You have been through a lot this year.:)

[rachelm]

Jolene,

Thanks so much! You've always had encouraging words.

Rachel:kiss:

[Teri]

Rachel~I am so glad that the implant is working for you and that you are getting pain relief too:party: It's so great when a miracle gets thrown at us once in a while!

As for the airport.....I flew to Hawaii twice, 11 hour flights from where I live with 2 plane changes and didn't have a problem at all with the implant. My dr did write a letter stating that I had the device and I might have to have a hand check but I was so glad it didn't come to that. I remember the vacation when I did go thru the security hand check and the people were rude and looked at you like you were a freak and they would deliberately waste time so I finally said screw it and went thru the dang thing and everything was fine.......

Wishing you the very very best:flower:

[rachelm]

Teri,

Thanks for sharing your experience. My uro nurse and tech suggested that I still have a hand check but that it would probably be o.k. if I went through the screener. My nurse said sometimes it turns off with it and if I had any problems to just come in. That's fine if it screws up on the way home but I want to have a good time in Vegas so since I'm still a chicken with it I'll probably just get a hand check. It may be the last time I bother but I'm still a little protective of it. I might try not doing it on the way home just to see what happens. Thanks for the info!

Rachel