Heart Issues? at 21? what?

I don't even know where to start, IC is horrible...

my interstim is off because it is completely in my leg and foot, so much so that I have a hard time standing and walking because of it.

and my right kidney and right leg, not sure if i have told yall about the pain in them, my kidney just aches all the time...and my leg wants to give out on me sometimes, my neurologist sent me to neurosurgery.

I will see my urologist and neurosurgeon on March 22.

I have been having these issues for a while, along with high blood pressure and high heart rate, I am now on 10 required pills a day plus whatever I choose for pain.

I went to the ER with the bp a few weeks ago, they gave me a tylenol and sent me home, wow. aren't they brilliant. :/ note my sarcasm.

I saw my family doctor and he put me on two medications for the high blood pressure.

It was still sky high last week along with my heart racing and heart rate running around 140.

I went back and saw the NP at my family doctors office, he decided he wanted to check my heart after i told him about my kidney and leg issues and blacking out and seeing green spots every time I try to do something and just not having any energy and losing my breath with the slightest activity.

I wore a holter heart monitor for twenty four hours, I turned it in Friday, and about two hours after they called me and told me to see a cardiologist, that they think I have Tachycardia, so the cardiologist could see me right then, so off we went.

no news yet, I had an EKG and some blood tests that day, and turned in my 24 hour urine (it was so gross, i had to keep it on ice) and in the morning at 8 I will have my echo done, then I have an appointment Friday to discuss all of the test results. I hope they don't make me wait that long though.

He put me on Bystolic twice a day, and it has me feeling just as bad if not worse than I did in the first place, I had almost every side effect that you can.

I tried to call and tell the nurse this but she never called me back, so I will be sure and let them know about this in the morning.

The doctor is also testing me for an auto immune disease, he finds it odd that I don't produce vitamin B, I'm anemic, and my thyroid is nonfunctioning,

Maybe I will have some answers tomorrow

:) hope everyone is having a good Monday

New News!

Well, since recovery I've had a lot going on. *something* has happened to my right leg. It starts about where my interstim incision is and goes straight down to my ankle, kind of like that annoying feeling when your stim isn't programmed just right, only more painful and down the opposite leg from the interstim....hmm... strange?

I've seen a neurologist and was diagnosed with

*fibromyalgia, taking Savella for it and having great results.

*my thyroid doesn't function, on synthroid for it, seems to be helping.

*my body doesn't produce vitamin B, so right now I am getting B-12 shots once a month.

the first week in February my thyroid will be checked again and my vitamin B and we will adjust my medicine to the results.

I had my B-12 shot on Jan. 5 and for about the past week or so I have been cooking and craving raw egg yolks....well, really runny egg yolks.... I have googled my heart out and all I can find is that it gives your body B-12....so i guess the shot has left my body and my body is craving things that will give it B-12?

My neurologist can't pinpoint the problem in my leg, he said it is too deep/complicated and I need to see someone in Neurosurgery.

I think it may be caused from my interstim, have heard of that happening a lot. I am currently waiting on a phone call from Ocshner Neurosurgery in hopes that they are willing to take my case and work with my urologist there ...since there is no relief in sight at the moment. :/

Major Update!

So it's almost been 2 months since I updated. A LONG 2 months at that. I saw Dr. Woo again, and he did an x-ray and my leads were not where they were supposed to be. I met with the medtronic rep and he confirmed that my interstim was no where near working how it should be, and recommended that I have revision surgery.

Dr. Woo was the only doctor who would do this surgery for me, since it was done wrong, I have officially been labeled a "complex case." Dr. Woo has great reviews and really knows what he is doing.

Revision surgery was scheduled for November 17, 2010...They called me on October 27 and asked if I could come and do the surgery on November 3! That was a week away! I said sure, because I was in so much pain and needed the relief.

I was in the operating room for 2 HOURS! He was planning on keeping me overnight, since the ride home was so long, about three hours. But we decided that I was so loopy after surgery I would be in less pain to ride home that same night.

Since then, I have been really sore, my legs hurt and I can't sit on a wooden chair or anything hard.

I went back for my post-op yesterday, I told him about the pain I am experiencing in my legs and my butt..its a general pain, not pinpoint pain, he explained to me that my body is very sensitive and the simple procedure I had done, my body felt like it was open heart surgery or something major like that, and that my body has a very small threshold for pain.

He then diagnosed me with Fibromyalgia.

I am now taking Neurontin once a day for one week, and will build up to three times a day to see if that helps with my muscle pain.

My interstim got adjusted and I am feeling great, just tired from getting used to my new meds :)

Seriously?!

I'm not real sure where to start since my last post, my incision has healed up, it's an ugly scar, but at least it's closed. The doctor in Hammond, Louisiana won't see me, since he didn't do the surgery, I have since then called dozens of doctors who just aren't seeing new patients or won't see me since they didn't do my implant.

I found a doctor at Ochsner's in New Orleans, his name is Doctor Woo, I saw him on September 24 and he did some x rays, told me that out of my 4 leads, that ONE is in the right place but he wasn't getting a real good response when he adjusted it. New Orleans is so far to drive that it put me in a flare, well, since then, my interstim hasn't worked, I felt it the first day or so, but now all I fell when I turn it up is a pain in my foot and it curls up and I can't move it.

He doesn't want me to have to drive back to NOLA because of what it does to my bladder, and he really doesn't want to have to do surgery that far away from my home.

He referred me to a couple of Doctors in Hattiesburg, which is only about 30 minutes from my house, but none of them would see me, not sure why...

but now I'm just searching hard for a doctor to help me...

http://www.ochsner.org/find_a_doctor/doctor/howard_woo/

Doctor Woo is amazing, it's just so hard to get to him, especially when it's like once a week...if you are near him, he should be your doctor :)

At the moment I'm in retention and having to self cath, and by the looks of it, there is more blood in my bladder than there is urine.

I am also patiently awaiting a phone call from an office in Jackson, 2 hours away, they are doing and interstim surgery on Friday and said I may can get in and have a consultation with the Doctor and the Medtronic Rep about getting my leads moved, hopefully this will work out, its been a little rough lately with the pain and such.

oh by the way, the FDA does NOT approve of the INTERSTIM for INTERSTITIAL CYSTITIS! nor for overactive bladder, therefore they are not obligated to help you locate a doctor, at least thats what I got when I called, so if you do not have numerous doctors in your area that deal with the interstim and ARE willing to see you even if they DIDN'T do the surgery, I would think LONG AND HARD about getting it done, because $46,000 is a lot to spend on something that may mess up and no one to fix it.

This brings me to the month of October, Interstitial Cystitis Awareness Month, I have so much to say on that, but don't feel like sitting here typing it, I will try and keep updated on how this is going and not make my posts so few and far between.

If anyone has had their leads moved, I am curious as to the recovery time and restrictions for that surgery.

Happy IC Awareness month, tell someone about it! :)

Getting Worse by the day? :/

I said almost a month ago in my last post that it was all over besides recovery...well...i didn't know recovery was going to be HELL.

I went to the doctor for my one week post op after my stage two permanent placement.

Dr. Stripling lives in Florida, flies into Meridian on Monday and drives into Laurel on Tuesday, well my appointment was Tuesday morning, he had gotten stuck in traffic, since I had to be a work I said what the hey, I'll just let the other doctor look at my staples and see if they're ready to come out, since he is a urologist too and all....

well....

he said "yeah, lets take your staples out" it took him about THIRTY minutes to DIG them out, it hurt more than anything I've ever felt before. And you couldn't tell they were staples, they just looked like balls of flesh and blood.

I could tell something was wrong, the nurse put a piece of gauze over it because it was bleeding and told me just to hold the gauze on until it stopped bleeding, but to leave it open....the picture below is what i saw when I looked at it...

After I saw it I went and asked someone if they thought it looked like it should...my face was pale and I was really woozy, at this point I felt really sick and it would not stop bleeding.

My mom came and got me and took me back to the doctors office, they say "oh, we should pack this... and by the way, it's not going to heal like it should because it busted open and we can't stitch it since it heals from the inside out."

It HAS to heal right because every 4-6 years they have to replace it because the battery only lasts that long...well...I will say I was pissed...and that's as nice as I can possibly put it...

It hurt all day after that and I was very upset and trying to get ahold of my Doctor because I KNEW this wasn't right.

At 4:00 that afternoon, he called me and told me to come up there immediately that I HAD to be stitched up.

I got there and he was waiting for me with a big pain medicine shot and numbing medicine along with stitching tools...Thank God.

After that horrendous incident, I started recovering, my doctor is a traveling doctor, so he left about two weeks ago. I miss him so much! My interstim is turned off at the moment, the Medtronic rep is supposed to come adjust my settings tomorrow so that I can turn it back on.

I have called 9 doctors in Mississippi and none of them will see me since they aren't the ones that did the surgery. I have one doctor supposed to call me back this week and if he won't see me I will be driving to Hammond, Louisiana or somewhere in Arkansas just to have these 5 minute adjustments done. Ridiculous, I know, but I may not have a choice.

I just pray that in the end this will be worth it, I know if I had a doctor it would be...for now I still have probably another month with stitches...and who knows how long before this thing gets straightened out and working again...

Satuday - Wednesday's update. and Stage 2

Sorry it's taken so long to update, but here it is! It's all over besides recovery!

Today is Thursday, and I got ZERO sleep last night, I have more pain in my one incision than I had the whole trial process. It's like a billion knives, but it makes sense since it is the second time the pocket has been cut open in a week, and the second time for it to have staples in it. ouch. I am taking it easy today, staying mostly on the ice pack, it seems to help a little, but I can tell when it's time to take some more pain medicine without looking at the clock. Bladder pain though, is a thing of the past. My settings on my interstim are set and I have no symptoms, if I can just get this incision healed I will be a new person. :) oh, and by the way, I haven't taken a bath or shower since last Wednesday. attractive, huh? I have only been able to sponge bath, I'm waiting on the nurse to call me back and tell me WHEN i can possibly bathe again, because this is not cutting it. In the pictures above is my only battle wounds left, the bandage is where the interstim went in. and then you can see my remote. I hold the black part to the incision and synchronize the remote to it and that's how I change my stimulations.

Wednesday came, I was supposed to be at the hospital at 11:30, well, when we got there, they said, oh yall can go home, the medtronic rep won't be here until about 2:30. We weren't going home, I had not eaten anything all day and I knew if I came home I would blow it. So they got us a holding room so we could wait, well, at 2:30, they tell us, that it will be more like 4:00. As 4:00 rolled around, no sign, they then come tell us it will be closer to 5. The medtronic rep FINALLY got there, then we had to wait on Dr. Stripling to get there. In the mean time, I had a staple to pop out, because my swelling had went down and I had been coughing and sneezing and must have pushed it out. I was in a great deal of pain and the holding room beds are not comfortable, so they gave me some morphine to ease the pain. I finally went back to surgery, they reopened my biggest incision, and put the interstim in it, the stapled it back together. I was in some pain when I got home. And yeah, that's my butt in that one picture, but I wanted to show my staples and the bright red blood is where the staples started backing out.

Tuesday I was feeling the stimulations in my tailbone, which was almost as bad as my leg, so I called and Ken changed my electrode settings again, and that setting, was PERFECT! I had to go pre register for my Stage 2 surgery and I had my post op appointment with Dr. Stripling, everything was looking good and we were all getting excited about my symptoms disappearing and doing the permanent surgery on Wednesday!

So on Monday, I couldn't even lift my leg to get in my vehicle, I couldn't bend any and I was in so much pain I was ready to rip that little stimulator out! I called a friend of mine, Renee that has the interstim and told her how bad my leg was hurting, she told me the same thing happened to her and they had to change her electrodes, because you are supposed to feel the stimulations in your booty, female areas, and mine was just going straight down my leg. So I called Ken, my medtronic rep, and we changed my electrode settings.

Sunday was bad, I believe that I over did it and I was having a real hard time getting around. I rested all day after eating Mother's day lunch.

Saturday I was in so much pain in my leg down to my toes. It was my electrode settings and i didn't know, so I just dealt with it. My sweet boyfriend did take me to Wal Mart so I could have an outing, I got to ride in the sit and shop, everyone looked at me as if I had no business in the sit and shop, I just smiled a little smile that let them know I WOULD run them over if they didn't mind their own business.

Interstim Stage one, day three.

holy. cow. today. was. horrible. So, my doctor told me and my mom the day of surgery that I could go back to work the next day, well, I wasn't going to over do it, but last night, I went to eat and to wal mart to "walk a little soreness out." well. this morning, I thought I was going to die. No bladder pain, but I couldn't even get myself off of the couch, my incision pain was unbearable. We have a new urologist in our small town, he's who did my surgery, none of the nurses know anything about it because none of the doctors Laurel has ever had has known how to do the interstim. So, they haven't been able to answer too many of my questions. I called the doctor first thing this morning, told him I had gotten out for a little while yesterday and he got onto me and told me to stay in bed, and called me in some pain medicine that works wonderfully. Hallelujah! I cannot get myself off of the couch if I'm laying down, but if I'm sitting I can get up. sooo, my wonderful mother built me a "nest" to support me and help get my comfy. It's been great since she's gotten home from work to help me, I can't bend to get anything out of the refrigerator or feed my poor sweet dog, and if I drop something, it just stays there. But as I was saying, I don't even feel like I have a bladder, I don't even realize it's there. I have only peed like 4 times today, with no pain whatsoever, it's the strangest feeling, to have no feeling when I pee! Oh, I do have a solution to the getting myself up off the couch problem, I put my feet on the ground, and call someone in here, they grab my hands and yank me up, that way, I don't use any of my muscles, so it's pain free. lol. I've noticed a little bit of bruising by my lowest incision, but nothing major, I'm not bleeding or anything, so the worst part is just incision pain. I hope this blog makes sense, I'm hoping to post pictures of my incisions tomorrow, I don't think they look much different other than slight bruising. My pain medicine is definitely kicking in, so I should probably go lay down...if I can figure out how too, it's h-e-l-l trying to get comfortable enough to sleep, luckily the pain meds knock me out.

goodnight, maybe my post tomorrow will make more sense.

You can see my "nest" in the picture, I find that if I put an extra pillow on the side of my incisions, that I'm a lot more comfortable and supported. And there's a little ottoman that I am able to prop my feet on. You can also see my sweet puppy at the bottom of the picture who hasn't left my side since Wednesday!