Monday, October 11, 2010

If I'm Pissy, Blame My Kidney Stones

Well, folks, things have been rather quiet here in Why Oh Why? land. I feel like my stories of kidney stones are a broken records and I don't want to bore y'all with my day-to-day struggles. I find the whole thing tedious myself!

When last I wrote, back in March, I had just passed two stones and had the results of the one passed in January.

A whole lot has happened since then so let me catch you up. This is a long, long post so pull up a chair or start reading if you're having trouble getting to sleep!

** THESE ARE MY PERSONAL EXPERIENCES. DON'T SUBSTITUTE THEM FOR THE ADVICE AND CARE OF YOUR TRAINED MEDICAL PROFESSIONALS! **

Since that time in March, I had passed quite a bit of blood. When I say "quite a bit," I mean that my pee is dark brown for days at a time. Based on my previous personal experience, I thought it took about 3 months from the time of first blood until the time that a stone passes. In hindsight, I think this was simply a coincidence and there really is no way to determine when all these things take place.

I was afflicted with this on both of my summer trips to NYC. Passing lots of blood, discomfort/pain, and the anxiety of possibly passing a stone. It's hard to enjoy anything when, in the back of your mind, you think that you could be in debilitating pain at any moment. What would I do? Where would I go? How do you get to a hospital in NYC?

The Diagnosis
So mid-summer, after four months of bleeding and I had returned from my second trip to the city, I went in to my primary doctor to get it sorted out. She sent me for a CT scan of my back to see what exactly we were dealing with.

The news wasn't good. You see, every time I would pass a stone, I told myself that it was the last. That it was a leftover from years ago and it had finally made its way to daylight.

The CT showed that I had four stones in my left kidney and eight in my right. Two of the four in the left were 15mm at their largest width. (One was shaped like a boomerang.) Since a max of about 2mm maybe 3mm in diameter can pass — they can be maybe 6-8mm long x 2mm wide like my others...shaped like a grain of rice — these two 15mm's were not going anywhere and would require some form of surgery. On the right, the largest was 7mm but thin and possibly could pass on its own.

I was referred to a urologist and I finally had someone who was going to do all the testing on WHY I keep making these stones. He said that kidney stones are not really a mystery. Once they find out why my body makes them, then we can prevent them, and get rid of the ones I have. The analysis of the January stone showed it to be the most common calcium oxalate type.

I was also told that kidney stones aren't exactly as harmless as I thought. They can cause serious kidney problems that could lead to kidney disease and dialysis! Had I known that, I would have been more proactive in my own care. I thought it was a matter of toughing out the pain and that be that. The CT scan also showed that my right kidney has lost about 20% of its mass.

He ran a series of blood tests and all the blood work was fine. That was great news! I then had to complete a urine collection test. I was sent two 64 oz containers, and I was to collect all urine for 48 hours — 24 hours per jug. When I saw these jugs, I thought it was rather ridiculous. Even funnier was that there was instructions for people that urinate more than that. More than that? I filled about 2" in the bottom on both days.

It turns out that I am severely dehydrated. Not such a surprise since I found out I was supposed to be filling one of those jugs a day! All of the other indicators of stones showed some elevation in the lab tests, but that was because of the lack of water to dilute them.

As I thought about it, I always have a drink with me but I rarely drink. And when I do, I take a couple of swallows and that's it. There's always some discussion about how much water people need to drink a day. Regardless of who you are, your pee should be CLEAR. You may need to drink a quart or gallon to achieve that. If your pee is yellow, you aren't drinking enough. End of story.

The "prescription" for my stones? Drink more water. Now, I thought I drank a lot during the day but this clearly showed me that wasn't even close to the case. I'm now required to drink 3 liters a day in order to pee 2.5 liters. This has NOT been easy but they assure me it becomes habit. Now I drink an 8 oz glass of fluid (usually Crystal Light) an hour. I set the oven timer for an hour so I can't slack off. I was also told to use a straw since we drink more through a straw than just from a bottle or glass. I still have to avoid foods that are high in oxalate including chocolate, spinach, cola drinks, coffee, pepper, peanuts, and a bunch of other items. Luckily, my dietary changes are minimal except the fluid intake.

The Options
What to do with those existing stones? I had 3 surgical options, each of which meant being under general anesthesia.

Option 1 was Extracorporeal Shock Wave Lithotripsy. That's the process where they send sound shockwaves from different directions to collide on the stone to break it up. I have had this before, once on each kidney, back in the mid 90's. You may have heard about this when people describe sitting in a tub of water. The times I had it weren't in a tub, rather I was on a table with my lower back resting on a "bag of jelly" through which the waves were sent.

I decided against Option 1 because the stones are big and it would take forever. When all was said and done, it is about 70% effective and anything that is left behind would be the basis for a new stone to form. It can also physically damage the kidney and have other side effects.

Option 2 was Ureteroscopy. They send a scope up through the penis, prostate, urethra, bladder, and ureter to the kidney. The scope includes a camera and a laser to break up the stones.

I decided against Option 2 because it seemed the most invasive. It involved a lot more of the urinary tract, which I think has had enough trauma throughout my life, and it is a procedure best for stones caught in the ureter.

Option 3 was Percutaneous Nephrolithotomy. This meant going in through my back. At first I was a little worried about how invasive it would be in relation to Option 2. When I asked about the size of the incision, I was told there would be no cutting. Essentially, they poke a hold in your back, push it through the kidney to the hollow center (renal pelvis) where the stones are, and put the scope through that. It also uses a camera and laser to break up the stones. The fragments are removed through the tube in the back.

I selected Option 3 because the chances of success (over 90%) were much higher. If things went well, all stones would be removed. Another nice about no cutting is that the scar should be a small dot like a puncture wound.

My goal is to have both kidneys stone free so I don't ever have to worry about this again!


The Surgery
When I met with the surgeon, he initially thought that we'd have to schedule for the end of October. When I said that the sooner the better worked for me, we decided to do it the following Monday. In our meeting, the doctor was knowledgeable, reassuring, calming, and explained things very well.

Two weeks ago, I went in and had the surgery. I really wasn't afraid at all. The surgeon had come with the highest of recommendations (my doctor's husband had gone to him for the same thing) and I figured they do these things all the time.

My brother dropped me off at 7 a.m. and I headed up to admitting. I told him there was no need to stay, and if there was a problem, they'd call him. Maybe I shouldn't have been so nonchalant about it but when you live alone for as long as I have, I don't have the need for the comfort of others.

A handsome and comedic nurse came in and took all my vital signs. The next nurse, who was to put the ports in my arm, wasn't nearly as skilled. I still have huge bruises on my right arm where she was unsuccessful. An RN came in and put a needle in my left arm without much trouble. It seems that my veins would collapse from dehydration. Notice a pattern here?

I was wheeled down to the prep area where I met with several anesthesiologists that asked lots of the same questions. Have I had surgery before? Were there any problems? Am I allergic to any meds? Why was I there? When I told them I was subject to motion sickness, they put a patch behind my ear. Apparently people with motion sickness are more prone to be sick from anesthesia and the patch helps.

The surgeon came in and went through the whole litany again. He asked (although he knew) which kidney was being operated on and then marked my left arm with a pen. All standard procedure.

A neighbor mentioned that her niece worked at the hospital and she'd send her my way to make sure I was okay. Talk about serendipity! She came by while I was in pre-op and told me she'd been assigned to my operation! That made me feel a bit better. Although I wonder if she's the one that put in my catheter. *blush*

I was wheeled in to the operating room at 9:30 and I woke up at 1:30. They wheeled me upstairs and into a regular room. Everything felt fine. The surgeon came in about 5 and told me that everything went extremely well, that he'd sealed me up on the outside (sometimes they have to leave the tube in) and that I was able to go home if I wanted. My next door neighbor was on her way from work to visit me so I got a ride home with her. Bod-a-bing, bod-a-boom!

The surgeon also told me that he'd placed a stent through the ureter from the kidney to the bladder. We'd discussed this prior. It assured drainage without the tube coming out the back. Since there is quite a bit of bleeding, they want to make sure that a blood clot doesn't block the passage of urine and causing any post-op complications.

We dropped off my prescriptions on the way home, and I picked them up in the morning. General antibiotic (Cipro), a pain med (generic Vicadin), and another med for the urinary tract.

I peed a lot of blood for the remainder of the week which was normal and I was told to expect it. I was able to walk around immediately. The pain was a dull throb; I took only one pain pill every four hours. By the end of week, however, I was constipated which was causing more discomfort that the kidney. It was a side effect from the pain med. I stopped taking that and things moved through with the assistance of a suppository.

The throbbing kept up throughout the weekend but it wasn't so bad that it was unbearable. All of the online information says that patients should expect to be in the hospital for 2-3 days after this procedure. Being sore for a week was something I expected.

One nice bonus of going home the same day is that my health insurance plan is set up that I pay a co-pay for the various parts of the operation. If it is out-patient, my co-pay to the hospital is $75. If I had stayed overnight, the co-pay would have jumped to $500. So I ended up saving $425!

I went in for a follow up appointment the following Thursday. They took a KUB (Kidney, Ureter, Bladder) X-ray in the office. The doctor thought he saw a little something on the X-ray that he may not have gotten during surgery but he couldn't be sure. I have a follow up CT scan in 2 weeks where we'll know for sure. I hope he got them all!

Also on that doctors visit was the thing I feared the most. The removal of the stent. You see, when the stent is put in, you're under anesthesia. When they take it out, you ain't. When I had this done back in the 90s, it was one of the most traumatic things I've ever gone through. The doctor assured me it wouldn't be as bad this time since they used to use stiff metal hardware as opposed to the flexible plastic used nowadays.

I'm not gonna lie, it wasn't a walk on the park. I laid on the table and they covered me from chest to toe with a 3" diameter hole cut in the center. He grabbed my penis and I closed my eyes! He pushed the probe down through. It pumped in numbing gel that helped somewhat. The doctor had great bedside manner and he talked to me the whole time. He watched a screen on the wall that showed what was going on inside. He wasn't able to grab the end of the stent right away. It was pressed up against the side of my bladder so he had to fish around for it. Once he grabbed it, he started pulling everything out. It was over in about two minutes.

What's Next?
First, I keep on drinking the water and monitoring my diet.

I go for the CT scan to make sure everything on the left is in good shape. Then, we have to decide what to do on the right. I'm inclined to do the same thing but we'll see what the scan shows and what he recommends.

In the interest of clarity, these links are in temporal order.

First Signs Of A Stone May 7, 2007
What I Know About Kidney Stones May 8, 2007
A Discussion Of Lithotripsy May 9, 2007
Peeing Blood, No Pain May 11, 2007
Pain Returns May 18, 2007
Pain Again In The Back May 26, 2007
Bloody Urine Is Back July 12, 2007
Passed Kidney Stone #1 July 26, 2007
Passed Kidney Stone #2 July 30, 2007
I'm The Morton's Salt Girl March 26, 2008
Stone On The Move March 28, 2008
Well At Least I'm Not Having A Baby April 4, 2008
Passing Kidney Stones Spring, 2008
I May Finally Have A Solution To My Kidney Stones! March 15, 2010
If I'm Pissy, Blame My Kidney Stones October 11, 2010
I wish you well.

9 comments:

Mom said...

Wow! You have been through a lot. Sounds like you doing all the right things now. Sure hope all this fixes the problem. Take care!

Sean said...

Whew! That sure is a lot to go through, thanks for sharing.

I hope you continue to improve and the good news comes.

I don't like the idea of you drinking all that crystal light - maybe mix it up by alternating CL and pure water.

I hope this kidney stone purge will allow your postings to start following again.

Y | O | Y said...

Sean--

I told the doctor I would have to drink Crystal Light to get thru so much in a day. He was supportive, saying that I should get all different flavors to keep it from being monotonous.

Iced tea is bad for stones, too. Luckily, I don't like it so it isn't something I'll miss.

I gave up all soda (reg and diet) earlier in the year so I don't have to worry about that either. It's also helped me drop 20 lbs since then!

--G

ArichNY said...

Thanks for the update Gavin. I'm pulling for you! Sounds like it went well! BIG HUGS!!!

Lacey said...

Ah. So THAT'S where you've been. Wow. Could you sense me involuntarily squeezing my knees together at certain points in the story? OMG. You've been thru a lot. I hope you are well on your way to recovery. Oh, and I realize now that I probably don't drink enough water either. thanks for sharing all that info.
best regards,
Lacey (and Tom)

dirkmancuso said...

Ohmigod.

I know first hand how bad those bitches hurt.

Bug hugs to you for what you've been through.

Jeanie said...

Thank you for such a vivid description of the situation. I am facing kidney stone removal in early Jan. Your post was very informative and helpful. My stones are quite large 1, 2, and 3 mm; they are struvite stones (caused by and causing UTIs). I don't feel quite so "clueless" now.

Anonymous said...

Found your blog though your post on FB to KDavid. I've had many a kidney stone as well. In regards to the Crystal Light- drink the lemonade and the raspberry lemonade flavors- they actually have potassium citrate in them that will help your body to release the calcium so it won't build up!
Robyn

kidney stones said...

A simple and most important lifestyle change to prevent stones is to drink more liquids—water is best. Someone who tends to form stones should try to drink enough liquids throughout the day to produce at least 2 quarts of urine in every 24-hour period.