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Posted By : Dustmite - 2/25/2017 10:56 PM
I am having a surgery on my bladder on the 15th of March and again on the 29th of March. The surgery is called interstim. It is a device that is put just under the skin. Like a pacemaker for the bladder. There is a trial period to see if the device will work for me and if it does, the urologist will do the final surgery on the 29th of March. I found out the beginning of January that I didn't have any kind of blockage around my bladder(I'm female). I also found out that I'm using my abdominal muscles to pee. She told me the bladder is like a rubber balloon. She told me mine is like a plastic bag and no longer works. The device should help by sending messages to my brain that aren't getting there now. The device works for 70 percent of people. I'm hoping it will work for me. I get up four to five time a night. And am going about every hour and a ha l f to every two hours during the day. Right now I'm lucky because my problem is forcing myself to pee, rather than peeing without realizing it. So anyway do you think these surgeries will cause flares. I'm told that I'm awake during the first surgery so the doctor can ask me questions as to where I feel the vibrations from the device. I'm not sure if I'm awake for the second surgery. Each surgery takes an hour. And yes I am very nervous about the surgery because the implant wire will be put close to the bottom of my spine, if I understood the urologist correctly. So I see the urologist a week before the first surgery. Should I tell her my concerns? At the time this surgery was first given to me as an option I didn't have a definite diagnoses of lupus. That came from the rheumatologist the middle of this month. All this is brand new to me. What can I do to avoid a flare. Last year I was hospitalized three time for flares. I had three major infections and my ammuine system was going crazy. The doctors didn't know it was lupus then, but two of the flares quickly turned into bacterial infections in my blood. I was pretty sick. The first one turned sepsis and shut down my kidneys, (i found out last July I have stage 3 kidney disease and my kidneys are working at about 50 per cent) affected my heart. Bottomed out my blood pressure. The third one was when I was under an extreme amount of stress. Family visiting while we were replacing floors. I got sick from that and my blood pressure kept bottoming out. I ended up in the ER and then a four day stay in the hospital. I was severely dehydrated, couldn't stop throwing up and when I'm stressed I don't eat, so I hadn't eaten anything in about three days. I can easily see myself stressing out over these two surgeries. I hate the thought of having to be awake during the surgeries. Is it alright to ask the surgeon about getting something for the anxiety so I can sleep the night before and be calm the day of the surgery? I don't know if I have to be awake during the second surgery. I will ask her when I go in to see her a week before the first surgery. I just know myself. I want this surgery. I want it to work. But I'm nervous as h:'ll about it. I don't want another flare. So any advice you guys have for me is so welcome. Thank You.

Posted By : Lynnwood - 2/26/2017 9:56 AM
Flares can be pretty unpredictable, but over the years I have found a few simple things do seem to help some.

Avoid stress - don't let your mind take over about these surgeries &other worries. Stress is more of a component that we generally consider, but in truth it's a HUGE factor.

Sleep & rest - get deep, restorative sleep. If you need to take a sleep aid, then do so. If you aren't getting at least 6 hours of uninterrupted sleep, ask your Dr about a sleep aid.

Food - eat as healthily as you can. Lots of good protein (helps with healing), vegetables and fruits. Easy on the white carbs & sugars. If you don't take a multi-vitamin, maybe add a good one. Drink lots of water! Eat 3 meals a day, don't let stress keep you from eating. Not eating WILL cause a flare for most of us!! And being dehydrated will mess with your blood pressure, as well as stress your already ill kidneys.

Exercise - while we will no longer be athletes, try to get some movement in. Simple stretches, gentle walks- movement helps the body organs function better - liver, kidneys, blood flow.

Sorry you have to be awake during the 1st surgery - that would make me crazy as well. Don't know if you are into meditation (I'm not), but something like that might help keep you calm during the procedure. Try to keep breathing regularly, holding your breath (a natural reaction) might make it harder.

Telling your Dr about your concerns and asking about anti-anxiety the day before sounds reasonable. Sometimes when we have Lupus a Dr will give us a few days of low-dose Prednisone the days leading up to a surgery and a higher dose the days immediately after. Since ANY irritation(surgery) almost always leads to inflammation for us, this helps control the inflammation before it even starts.

Stay calm! Stay in the current day -- try to focus on today rather than surgery day. Best wishes.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2000
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

Posted By : Butterflake - 3/4/2017 8:26 PM
Hi Dustmite. I've never been able to cope with all the changes Lupus has caused me so I've been seeing a psychiatrist for 12 years. I take antidepressants, anti-anxiety, and a sleep aid. He's had to place me on many different meds over the years.

I've had three minor surgeries, two major surgeries, and 13 endoscopies. I've also been hospitalized for sepsis and pneumonia (led to a coma and long term care) but neither were related to Lupus flares.

I mention my psychiatrist because my surgeons let me stay on all my psych meds, but by two weeks prior to my major surgeries I had been tapered off my Cellcept and prednisone Lupus meds. I know I resumed them after surgeries but can't remember how many days I had to wait. I'm sure I flared afterwards but I felt so awful from surgery I didn't care. The flares and lack of immunosuppressants didn't cause me to get an infection. At some point my body stopped producing IgG that is necessary to fight infection but I still didn't get post operative infections.

One last note, during two minor surgeries I was awake and they let me listen to music on headphones or my IPod. Anyway like Lynnwood said stress is a killer that must be avoided. I wish I didn't have to take meds to relieve my stress. You can ask your primary care for an anti-anxiety med to help you thru this if you feel too stressed Dustmite. Just tell your surgeon all the meds you are taking. Venting to us helps too smile Love, Butterflake
SLE '05, Sjogren's, Fibro, Raynaud's, major depressive disorder, anxiety; CVID (Common Variable Immunodeficiency); IVIG infusion monthly; Hypertension; Osteoarthritis of the spine, right knee, fingers, toes; Osteoporosis, CNS problems, GERD, angina, 1st stage kidney disease. Many meds: Better living through chemistry

Posted By : Dustmite - 3/21/2017 6:42 PM
Thank you both for your advice and sharing your experiences. I have made it thru my first surgery. I did ask the surgeon for anti anxiety meds to use a couple of days before the surgeries and explained my concerns. Mainly the flares. She wrote out the prescriptions. They helped alot. Second surgery next wed. At least this one I will be knock out. A lot less nerve wracking. So anyway thank you both. God bless you both. smile.

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