Trying to remain calm and focused

Heading to Dr. Rehberg this morming. When I originally made the appt it was because the panic attacks/hyperventilation, whatever the hell you call it, were still hitting. I am feeling better the past couple of days though and no longer want medication. So I am going in so she ould look at my damn ears which have been hurting for the past week and antibiotics have not helped. Not sure if she sees anything - I may have to go to Dr. Remsen. Anyway, it will be a good test for me. Every time I have gone into her office, I start freaking. Lets see if I an keep it under control today. Look down on me God and give me the willpower and strength!!



I did it!!!! I not only made it thru the appointment without having an attack, I even went to the library right after, AND THEN TO WALMART!!! WOOT!!! I know it sounds so silly but to really understand what I have been feeling and to know what an accomplishment this is for me, you'd really have to feel what I felt. I am fighting this motherfucker with no drugs!! I WILL NOT GIVE IN!

Jeez, its been awhile...

Update on me: I wound up going to the hospital to have the stent removed because after Dr. C. KILLED me trying to get it out in his office, it wasn't happening. :( So I went to St Clares that Thursday, was totally dehydrated, MISERABLE and in pain from Dr. C.'s "stabbing", and went to same day surgery. All went well, no pain afterward, and I'm stone free but now....

I have fucking panic attacks and anxiety! As IF things werent nuts enough. The Friday before the stent came out (Aug 1st), I was heading to St Clares for a last xray and all of a sudden, I felt sick and faint and couldnt breathe. I kept thinking about my breath, suddely I am hyperventilating on Kincaid Road, kids are in the back. I made it home...barely. EXTREMLEY shoken up. Made it thru Sat and Sun, finally Monday I saw Dr. Rehberg and told her what happened. Meanwhile, as I am telling her I am trying not to have a PA. I dont even know how I made it to her office, I was a mess. We both thought that the anxiety was over the stent coming out the following Wednesday, so she gave me an RX for Xanax and told me to come see her again if I still have it once everything is over. Total mess till Wednesday, then no stent coming out, then the hospital... Friday comes and yes, still trouble catching my breath. Saturday I head back to the doctor because now I have a sore throatt and my ears are killing me. Have problems breathing in office, pop a Xanax and walk out with an RX for antibiotic. Sunday we go to Jonathans birthday party, in the car I was freaking, get to the party, and again, attack. Another Xanax. So much for this being over once the stent came out. Monday evening I had trouble relaxing, and that was the last Xanax I took as of today, now 5 days later. It is SLOWLY getting a tad better, I STILL feel it coming over me, but I start breathing deeply, and focus on NOT hyperventilating.

Today was a great day for me. We went to go see Josie and I made it there ok!!! Took a nice walk while I was there, ride home also ok. I did it! One day at a time, right??

I've ordered something online from vitacost.com called 5-HTP. Its supposed to be great for all this, and I am happy because its natuaral and not an addictive drug. I have been FIGHTING taking the Xanax.

I am supposed to go back to Rehberg on Monday. I get a little nervous about it because for some reason I have an attack every time I go there.

Got my "date"

August 6th the stent will come out. Dr. C's office just called me to set up the appointment. Can you believe I am not looking forward to it??? I am so worried that I will be in pain after it comes out, not the "reaction" pain, but I'm worried a lot of stones will come out once the stent is out and THAT would be very painful. I have been straining and I do have some gravel but I dont think its anywhere near what I have in me yet. I think I will stand on my head later and try to get it moving. I do have some discomfort now, too, which I havent really had in the past few days. I went to the bank today and stood in the drive-thru thinking "Hurry the hell UP!!!!" because I was starting to feel the twinges in my kidney. Also, I do feel some of the pressure down thre too. It kind of feels like the last month of pregnancy, like something is hanging down funny. Otherwise, I guess I should just stop bitching, because it is going ok this time.

Saturday night I actually went across the street to A.'s house. She was doing a BBQ, and I had 1 1/2 frinks and 2 cigarettes. I know, I know, not a good idea but they were quite delicious ;)

I am still waiting....

...for the pain to hit! Ha! For real! Now, mind you, I am NOT complaining, but I am still in complete shock over how I have been feeling this time around. Completely opposite form last time. Now, I DO feel kidney pain, I feel the pain in my back, but I haven't needed to overdose on Percoset like before. Last night I slept the whole night thru and hadn't taken anything after 7:30. Sore, but manageable. The other thing is the whole stent thing. I can't FEEL this stent! How crazy is that? The last one I could feel every inch of it in me, it was painful and irritating, it burned when I peed, it effected me mentally, it was HORRIBLE. Maybe I was allergic to the material of that one?? I don't know what the deal is, but this one is almost non-existant, I wouldn't even know it was there if the doctor hadn't told me he put it in. Dr. Cubelli will be getting some tray of cookies when this is all over!

The Urelle has finally made my pee blue, so I guess its working. I had to add some Benefiber to my water yesterday to get myself going (and yeah, it worked!) I have passed a couple of brown stone fragments, all small, but again, even after 5 days, I didn't pass anything the 1st litho. I started passing the 2nd day this time.

So knock on wood - there is my update - lets just keep hoping it remains this positive.

Litho #2 was today

Of course my nerves were crazy. I kept telling myself that this was a good thing: I had made it thru vacation without the stone dropping and I was getting it done before it COULD drop. Getting jabbed 3 times while they tried to get the IV in was a bit nerve rattling to say the least. But I took a big breath, calmed myself down...and the next thing I knew I was in recovery. A bit slower this time to feel better. One ginger ale and three packs of crackers later, and a trip to the bathroom and I was on my way home.

Dr. Cubelli put a different stent in this time and knock on wood, it seems to be feeling a lot better than the last. I also got a prescription for Urelle, a bladder spasm medication that turns your poop and pee blue (hasnt happened to me yet though - I am sure the kids will be thrilled to see my blue poop lol) Took one pill so far - tomorrow I will start the three a day I am supposed to take.

Percoset every four hours is keeping me sane.

So far so good - pray it stays this way.

In OC

Its day 3 here - today s Monday and I am feeling good. Finally. My appetite seems to be back, I am going to the bathroom (i Know, TMI!), starting to feel better mentally and physically. My side has its moments of pain but the past day has been really good. Hit the boardwalk yesterday, was able to walk for a few hours, kids are having a blast!!!!

It was definitly the right thing coming here.

Today has been better

Slept well last night - still have some diarrhea, I'm assuming from the dye. But its been a good thing because it cleared me out and got rid of that pressure. I am trying to be positive. Today has been better, I actually put makeup on today, lol. Joe has been so supportive, and reassuring, that all will be ok, and he is right here with me. The kids have been great too. They make me feel better and I need them to keep me grounded.

Tomorrow morning we leave for the shore. Hoping God is looking down on me and keeps that damn stone right where it is until I get in on the 17th.

spent morning in ER...

Joe took me. The rectal pressure was still bad. Had a dye contrast CAT done, blood work and a rectal exam. No blockage, just my colon is a bit swollen. They took a stool sample (nasty) and I will hear in a few days if anything. Nothing else to say.

So much for waiting....

I can't believe I wanted to wait till Septemeber to get this damn stone taken care of! When I left St Clares, I was like "I am NOT coming back! And I am NOT getting this stone taken care of for a loooong time!" Ha! I can't even believe what I am going thru. I lost 12 pounds, I can't eat, I feel nausea, my bowels are backed up, you name it. We're supposed to leave for the shore on Saturday but the thought of doing it makes me want to puke. The anxiety, fear and all these other emotions are swirling all over me. What if we go to the shore and I wind up in the ER there?? What if the stone comes down and I am no where close to home?? I guess you need to have lived thru the pain I lived thru to understand how I feel. FEAR. Real, pure, fear. So I brought it up to Joe that I think I should stay home. He feels helpless of course. He doesnt know how to help me, and that makes me feel so bad too, that he feels so bad. I hate what an effect the past month has had on all of us.

So now I am thinking I need to get this stone taken care of ASAP, whatever it takes. I am terrified of it, but more terrified of doing nothing. I just spoke to Cubelli's nurse, and she made me an appointment at 12:15 to come in and talk to him. Not sure what he is going to say, but feel relieved to be taking Step 1. Will update more later.

********************
Update: OK, went to see Cubelli, and I was so impressed with how he took his time to just sit down and talk to me. We sat and talked for about half hour, he gave me a quick exam to see if I felt pain anywhere, etc. He kept stressing to me how important it is for me to come out of this funk, he asked if I needed antidepressants, he couldnt believe how nervous I looked. I'm sure that is a nice way of saying "total wreck". He says I need to let the past pain go and just look ahead. I asked him, "How? How do I look ahead?? I still have this stone in me that has to come out and I can't think of anything besides that!" He told me I have to. The stone is going nowhere, he says. Go on vacation and have a really good time. try to relax. He has booked me for The Stone Center the week after the shore, so the week I am home, I will be heading once again to Newark. 50% of me wants to throw up when I think about going thru lithotripsy and the stent again, the other 50% wants to kiss him for making this slot for me. He told me he will look at the last stent I had and maybe there is a different one I can get that will be a tad more comfortable (I doubt it). I really, really have to get myself into the right frame of mind for this so I dont wind up back in the ER.

I also had an xray done today - he will look at it tonite and call me tomorrow - it was basically done to reassure me that the stone hasn't moved since my last xray, and I pray that IS what he tells me when he calls.

I survived the weekend

Major issues here! Good god - what I would do to just feel like myself again! I think I have a stomach bug, or at least I did over the weekend. Threw up my lunch on Saturday and wound up missing the fireworks because I went to bed at 7:00. Sam was here, which made the kids happy. Joe was running around most of the weekend, with and without Sam, it was pretty crazy. But man! The anxiety I have is not to be believed. I would like to take my blood pressure - wondering if it is higher than usual. And of course, when I google high blood pressure and ESWL, it looks like that shockwave shit causes some people to experience high blood pressure after. Its been almost a month since I had it.

Today I will call and make my follow up appt with Cubelli. I honestly have no idea how the heck I am going to remain rational and calm for the trip to the shore. We leave on Saturday, we come back next week, and I am praying I am ok.

Now this is just sick!

I just opened the mail. THIS IS NOT A BILL from St. Clares. Ready for this? My two day nightmare cost $32,065.52!!! Yup, you read that right! My insurance company is going to be like holy cow, when they see this bill as well as the lithotripsy bill.

No supplements today

And I think I feel better. Last night I lay in bed feeling like I was having a panic attack. Sam is here, and him, Joe and the kids had a fine old time out back, had a fire going, went swimming, toasted marshmallows....while I lay in bed feeling my heart pounding and just not feeling "right". This anxiety: is it the supplements or my fear of the pain? I feel just slight twinges in my kidney, and I start hyperventilating. I am petrified the stone that is in there will come down, clog me up and send me to the emergency room in agonizing pain. THIS IS AWFUL!!! I cannot live like this! Its literally killing me. I just do not feel right. Not sure if the supplements had anything to do with it but today I didn't take any, and I *think* I am a bit better. Really, I think when we come back from the shore I am going to make my appt to see Cubelli and just get the ball rolling on the stone. I really really thought I could just "let it go", take a break and maybe do it when I absolutely had to, but I just want to get it over with at this point. I dont know if anyone has ever died of anxiety but I feel like I will if I dont get rid of this stinking stone.

Had lunch at the lake today with Pat and Tracy - Joe, Sam and the boys took their fishing poles out on a boat and rowed all the way out. Being with friends does take my mind off it all. Unfortunately I cant always be distracted and I feel the panic creeping up on me. I dont know how people with chronic stones can stand it. I am praying once this stone comes out, they stay out forever. I will do whatever it takes.

I cant believe I have a blog devoted to this!

New doctor?

I made an appointment today for July 14th for a new urologist. His name is Dr. Lee Pressler and he is out of Morristown. I can't decide though if I WANT to go to another doctor. There is the part of me that thinks I should, but the other part LIKES Dr. Cubelli and he has been with me on this nightmare since day 1, hence knows my history with the first lithotripsy/stent/emergency room crap. I just want to be DONE with all this. I dont know. I will decide when I come back from the shore. I am really, really, REALLY trying not to let thoughts of the stone still in me consume me and depress me so much but its hard. Its ALL I think about. I also cant tell if its my nerves about the stone or the potassium/magnesoum/B6 supplemets I am taking that is making me feel so super-edgy. Really bad feeling. Hate it.

One minute I am googling shit and torturing myself with what I read, the next minute I am calmly rationalizing to myself that I CAN do this again, I NEED to remain positive about it all and just deal with it. Stop being a baby. Deal with the lithotripsy. Deal with that damned stent that I will probably need to keep in for 4-6 weeks. This isn't forever, and I want this stone OUT OF ME. I swear, I can feel pain in my right kidney. I just want it out.

Argh.

The Vitamins are here!

Whoop di do! Though I did mess up and order the wrong type of potassium - uh-oh. I should have ordered potassium citrate and istead I got a bottle of Ultra Potassium, which states on the back contains a mix of calcium (no-no), Vitamin C (another no-no) and potassium. I took one before realizing it. So I just ordered the right stuff but now I am wondering if I even need the potassium citrate for my type of stone formation. The Magnesium citrate comes in a 170mg pill, and I need to take 2 of those a day - the Vitamin B6 is 50mg. One of those a day should be fine. Its worth a shot, right? All these studies can't be wrong.

I have also realized that the only way the stone I still have is coming out is to go thru the lithotripsy and stent again. (gulp) Unless Cubelli has something different to talk about when I decide to go see him. I figure I will hear what he has to say, and then go to another urologist for another opinion. Karl was here the other night and said Liz had no problem with the stent. Maybe there is a more comfortable (thinner) one I could have? I guess I need to stop torturing myself and just wait till I see Cubelli for answers.

My Opening Message

I'm creating this blog because I think its important for me to remember what I went thru the past 2 weeks. I know time has a way of erasing pain, and as much as I'd like to, for some reason, I think it important to document what I went thru.

About a month ago, I went to a doctor due to pain on my right side. An xray showed I had 2 largish kidney stones in my right kidney. One was almost 3/4 an inch, the other about 1/2 inch. My urologist, Dr. Cubelli, told me what I needed to do: shockwave lithotripsy, and then go home with a stent in, which helps move the broken down stones, and I'd need to wear the stent for at least a few weeks.

On Thursday, June 5th, Joe took me to The Stone Center in Newark for the procedure. I was a nervous wreck, I dont think I have ever been so nervous in my life. To top it all off, while I was lying in my gown, waiting to go in to the procedure room, Dr. Cubelli tells me they wiull only be able to hit one stone that day, and I'd have to come back to get the second one done. WHAT????!!! I started crying, I couldnt believe I had to mentally prepare myself all over again to do this.

They bring me in, the anesthesiologist gives me oxygen - I was lying on the table and it took EVERY OUNCE OF MY BEING not to get up and run out of that room. The anesthesia burned going into my arm... and then I was out.

Woke up in recovery, wide awake and alert, no nausea thank god, but OMG!! The stent!!! What a horrible feeling it was! Never felt anything so awful!! Felt like I had to pee so bad, but nothing comes out. I spent 40 minutes running around recovery, in and out of the bathroom like a fool. I dont know how Joe got me home. I was perched on the edge of my seat, with the window opening, praying to just get home. Worst feeling.....

Got home, sat on the toilet while Joe went and picked up my Percoset prescription. Took 2 when he got home and slowly felt a bit better. Horrible burning when peeing, still feel like I have to pee all the time but dont.

Stent is very very very uncomfortable. Can feel it in there. Starts fucking with my head mentally. I cant believe I have to wear this thing for weeks! My whole summer is shot, I think - I spend the next few days drinking tons of water, taking pain killers and crying.

Finally, on Tuesday, June 9th, I call Cubellis office: "PLEASE. Is there any way I can have the stent removed?? My body does NOT like it!" After a run-around, I am finally told that if I get an xray done right away, the doc will look at it, decide, and remove it. I fly like the wind to St Clares, get the xray, and 2 hours later get a call from Cubellis office: if I get to the office right away, he will remove the stent. Hooray!

Throw the kids in the car, fly again to the office, and after a very uncomfortable and kind of painful few minutes, the stent is removed. My kidney and insides immedialty start throbbing a bit and I ask Cubelli how long till I feel normal again. He assures me I will feel better by that night.

Well. After an hour home I am in agony. My body was reacting badly now to the stent being taken OUT. My kidney had gotten used to it and was throbbing something awful. Started the Percoset again - took them all night. Woke up Wednesday morning and felt....

OK.

Wow. No pain. Just a percoset hangover. Took no pain killers on Wednesday and thought it was all behind me.

Thursday morning I wake up feeling decent also. Its now been a week since I had the lithtripsy, the stent is already out, and I am feeling hopeful. This wasn't THAT bad, right?? So I have to go back and get the next one done at some point but if it goes anything like this, well, it wasn't THAT bad.

10am hits and I am slowly but surely starting to double over from the pain that is hitting me. Intense. Right side. Agony. Take 2 percoset. Throw up violently an hour later. Tons of water that I had drunk all comes up. So my body is not absorbing my water. I am urinating ok but definitely not as much as I should be. PAcing the house, dont know what to do...

Call Cubellis office, leave a message. Cubelli calls me back. He is at the hospital all day, and tells me if I can't take it anymore, come to the ER, tell them he is my doctor, they will page him, and they will check me out and see whats up. 12:50 hits, the kids are about to walk in the door from half a day... I call Audrey to ask her if Kera or Kelsey will be around in case I have to go to the ER, so they could take the kids. Aud tells me she will be home in 25 minutes and hangs up. Kids come home and Aud gets there soon after....off to St Clares ER.

Throw up in the bathroom at ER, still dying of pain. They finally get some pain meds in me to give me relief. A cat scan shows I have an obstruction in my kidney/bladder. The broken up stone fragments have clogged me up and cant pass.

Cubelli does surgery on my at 8pm to clear the obstruction. I wake up in recovery feeling relief and have a morphine button for company, thank god. I get some much needed rest that night.

Wake up in the morning. When Cubelli did the surgery, he also put in a urethal catheter - which means I have a catheter INSIDE me AND outside me. There is a pee bag on the side of my bed and I spend the day watching my bloody urine flow in the bag. Because my body is so stretched and warped from the stent I had, the catheter on the outside isn't securing right and I leak. Getting up and sitting in a chair is painful, so I spend 2 days lying in my hospital bed, hitting my morphine and praying this is all over soon. The kids and Joe come to visit me with beautiful flowers - it makes me so sad to see them leave that tell Joe I dont even want them to come back, I want to see them at HOME. My roomate is awesome and her and her partner are the only things that kept me sane. Nurses SUCK. I go thru three different IV's, no one changes my linens or even offers me water. Will never ever go back to St Clares for a procedure again.

Saturday the 14th. Cubelli had promised I'd be coming home this day, and I wake up happy and fiull of anticiaption. Ha. the day drags on and on and he finally shows up at 12:30. Tells me I look good, removes the catheters (oh sweet relief!!!!!!) and tells me to just take it easy for about an hour before going. I do, and at 2:30, Patricia comes to get me. Poor Joe is home nursing an injured leg, and I tell him not to tell the kids I am coming, I want to surprise them.

I almost kiss my doorstep when I see it. I cant believe I am home. I am so scared though - that I will get hit by pain at any time. I take a Percoset when I get home, I feel soooooo sore. Like I did kind of from the c-sections. Very raw feeling. I spend the rest of the day resting and taking it easy, had some pizza for dinner, slept ok.

Sunday morning I felt pretty good as far as pain-wise. Its Fathers Day and I am determined that Joe have a good day. We went to his moms to have a bagel breakfast. Then we came home and went to Patricias for a little while. At about 6 we went over to Audrey's - she was cooking for the men and us that night. While there, Anna Q. tells me SHE has a kidney stone embedded in her kidney but the doctor told her that unless it was bothering her, not to worry about it. Hmmm. Interesting to know.

Sunday night the pain hit. Not godawful, but enough to have me pacing. Took 2 percoset and put some heat on the spot, which relieved me a lot. Went to bed at about 12, slept well, and woke up the next morning pain free.

Its Monday and I finally passed some "gravel"! Was sooooo happy! So that was why I was in pain the night before: the leftover gravel from the stone was passing. this is wonderful news!! I pass the gravel a few times during the day and am jubilant. The next few days pass ok.

Today is Thursday, June 19th. I have not had kidney pain since Sunday night, and am finally starting to feel that I may have passed it all. Its a horrible feeling to constantly be waiting for pain to hit. This has been such a goddawful 2 weeks. Today I felt HAPPY. Finally life is starting to feel like life again. Yet over my head looms the realization that I STILL have another stone to take care of.

I have decided to wait to take care of it. I have been researching kidney stones, reading the net, books from the library, you name it. I've learned that besides drinking tons of water, which I have been doing, tkaing supplements can help a) dissolve exisitng stones and b) prevent new ones from forming. I ordered some potassium citrate, magneium citrate and vitamin b6 yesterday. These are supposed to be the life savers. I plan on taking them every day, and after a few months, want to get another xray done to see if it is having any effect on my exisiting stone. I pray it does. I dont want to do this again. It kills me to think of it.

So that is my story. My plan is to keep this blog/journal updated with any progress, or unprogress.