had surgery, still alive OR.. An Ode to Super G

Warning, opiod induced ramblings ahead.

Tuesday I had an autotransplant of my right kidney. They took the kidney out, cleaned it up, severed all the nerves and put it back in my body in the groin, the pain in my flank is gone!!!!!



I'm still in a lot of surgical pain it is hard to get that under control once you let it get away from you. Today is Friday, and I'm still trying to get the pain under control. I switched to oxycontin and oxycodone to try and ride out the pain. So far, it is not working very well.

Two days later and I'm out of the hospital. Super G is back in Ohio, Hightower and The Little General (forget what I've named her before, but that is one my stepmother knows ) went back to Nebraska, put Uncle John to rest.

I struggle with the surgical pain, but I know it will go away and get better. Friday I woke up 30 pounds heavier than I was on Thursday. I was not making very much pee, so they poured fluids into me, then gave me diuretics to get it out. I wasn't so happy with the plan, and upon release on Sunday, we had to go to wal-mart and get me some clothes, as I had one pair of pants and one shirt that fit me.

I obsessed about this weight gain, my right leg was so swollen and tight I could not bend my knee. I described it to the nurse as being a watermelon wrapped inside a grape.

Not very comfortable.

But it is going away. And I am here alone, again. In quite a bit of pain right now, waiting for the meds to kick in, so I ambled out of my room and came down to the business office to blog. I don't mind surfing on the craptop in my room, but I need a desktop to type with speed and finesse. You can't do anything with finesse on a craptop.

So I was in the shower this morning, thinking about Super G. We've had our ups and downs. I'd say that my medical oddity odyssey was definitely a down. It has been hard, learning to live with a person that emotes, and has thoughts that must be heard, and things of significance to say, and feelings that get hurt. But it has also been wonderful being with someone who can finish your thought in the same perverted way. Nothing has been more rewarding to me than to parent the two blessings that he gave to me all Goddamned day, and fall, completely exhausted, into a bed full of dog hair and Goldfish crumbs, snuggling up nekkid under my own blanket next to him and his seven layers of pajamas, and giggling about some stupid demented thing until one of us (usually me) has to get up and pee.

Eight years later and he can still make me pee. THAT is saying something considering the shape of my kidneys.

Last Tuesday morning, as we walked from the hotel lobby to the hospital for my evisceration...uh, I mean surgery, I casually, and not so subltly pointed out to Super G this beautiful emerald and diamond ring on display. Chances are it was antique, chance are it cost more than the Hulking Mini Van of Death, chances are that it has been on display in the same place for a long time, as there were tiny cobwebs around the box. I had looked at it every day for a week. It never moved, the display never changed. I made sure he saw it, a definite "if I survive this surgery, this would be a good gift" hint. You See.....

Super G has Gift Angst. Severe and profound Gift Angst. He tries so hard to give people what he thinks that they want, then he flounders in an ocean of indecision about his gift, then he worries. Then I tease him. And for the big ones, yeah, he sucks. The year I got the lesbian lumberjack shirt that was 2 sizes too small. Fail. The Christmas I got books 4, 5, and 6 out of a series in which I had not read books 1, 2, and 3 (and no, seeing the movie is not the same). Epic Fail. And then there was the subwoofer. Blatant gift-was-really-for-you fail.

No one can be perfect, and this is his blemish that I have engraved large and bold in type and on the internet for the world to see, and read and laugh and mock.

However, my intent here is not to destroy his confidence and make him a laughing stock. All our friends, and now, everyone else, already knows about the trail of less than stellar gifts. And he has dutifully given me exactly what I ask for when those all important times of year roll around. ( **cough** Kennth's Gift Certificate**cough **)

Nope, in the shower today, I realized that he gives gifts of genuine love and care, of tender emotion and undeniable affection. He hears me when I prattle on about the smallest of things.

I say once, in some odd conversation about hunting season and why I only want to cook wild game taken down in the meat department of the grocery store, that I'd always wanted to shoot a gun. Seven months later I get a gift certificate to the local shooting range to take a Concealed Carry Weapons Class, where I will get to shoot lots of guns, and find out that I'm actually good at it.

Wow. It was the coolest thing I've done in a long time, I still have my targets hanging up and we are now members of the club. I can't wait to get my NRA membership!!!

What kind of guy would remember that one little comment, so many months later?


Then there was the music. The song "Photograph", by the group Nickleback, was going through my head and I was singing it to myself as I gathered laundry upstairs.

I come downstairs to start working and discover that he had downloaded the song in a legal and legit way, and put it on my desktop, so that I could click on it and listen to it over and over, whenever I wanted.

That, my friends, is geek sweet. He's a systems engineer, he's not some smooth talking Lothario car salesman-real estate agent-businessman-corporate executive. He is different. He thinks differently, and I realized today just how lucky I am at times to have that in my grasp. When he stops worrying about getting the gift that I want, and just does these little things for me, it swells my heart and helps to overshadow the times I have wanted to bash his head in with a rock.

Friday, my feet were cold in spite of the fugly hospital booties I had on. So we went downstairs to the gift shop, and I bought a set of fun socks. They were zany colors and designs, you get three of them, and none of them match. I got multi-colored puzzle piece print, and multi-colored stripes of differing widths. They made me smile when I looked at them. As the weekend went on, I realized that I'd never wear them out of our house with the whole mis-match thing going on, and I really loved that puzzle piece print. So on the auspices of going to get a goofy pair of socks for Bug, I slithered another package in for me (along with a "Repaired in Rochester" T-Shirt). I didn't need them, we really didn't need to spend the money, but they made me smile when I looked down, and so he didn't batt an eye.

It's the little stuff. When he doesn't anguish over it, and think about it, and feel like he HAS to get me something, when he just sees something and thinks of me, those usually turn out to be the best gifts ever. Sometimes, when I've had a long hard day, and I am keying furiously to get my work done by ten, and he gets home at 9:30, the best thing ever is when he hands me a cold REAL Coke, because he knew when he left work that I had a hard day, and might need it.

Getting back to the ring.

Coming back to the hotel yesterday, as we passed the display case, my heart skipped a beat...... the ring was gone! I got a bit lightheaded and shaky, until I saw that it had only been moved to a different spot in the case, as another ring was missing.

Now, I don't know if he did or he didn't. But part of me says he went back to see if it was possible for us to get that ring. Maybe he did look at it, maybe he didn't. But the cool thing about Super G is that I know that he at the very least thought about pricing out that ring for me, and the love and devotion and sweet, sweet passion for me that he has in perhaps even thinking about pricing out that ring are more than most other women could ever hope for.

Or, they actually just dusted the display for once and put it back in the wrong spot and the asshole didn't even so much as give me a get well card.

Take your pick.

Me, again

Hi everyone.

It's me again. The pain on the right side is back. It is like fire that burns AND stabs at me. It drove me from my room, down here, where I can hear people moving about and talking, so I'm not alone, scared and hurting. Scared and hurting so much.

Hightower (my dad) is coming up tomorrow, will stay for my surgery and leave on Wednesday. His Uncle-in-Law, Uncle John, passed away Saturday morning. The viewing is Wednesday night, funeral on Thursday. But he's still coming up here. Probably because I called today, sounding so scared and lost. I am grateful and happy for that.

Super G will be here tomorrow afternoon as well. So I will no longer be alone, this makes me happy.

I was out walking today, and ran into a family walking a Bloodhound named Emma. Supposedly she's a famous dog, doing some ads for a local shop. I explained that I was from Ohio, didn't know her, but rescued Basset Hounds and really missed the ears and drool. both of which Emma graced me with. And for a while, I felt better.

This pain won't abate, I really really don't want to go to the ER again tonight, I want to just have the pain go away, but the more I sit here, the more it hurts.

How wonderful life will be without this constant horror in my side........

and how very strange.......

Missive from Minnesota

So, I am still here, in lovely downtown Rochester. Everyone here is as nice as they can be, knowing that most of us staying here are sick, or dying or both. There is one little old lady who parks herself in the lobby all day long, everyday, dressed to the nines. I've found out that she has lived in the hotel since the late 70's, she is 101 years old.

Interesting.

Lots of soldiers here today. The Iraqi bigwig must have left, as the secret service goons are gone, or else they have become less conspicuous. Most of the stores are closed on Sunday, so I can't go visit Trisha or Michelle, the girls who run the toy store. They have sympathetic auras, and I instantly knew that I could go in there and breathe deep and let the tears run down my face without worry. Standing there among the Thomas toys and the pretty dolls, I think of my children, and how much I miss them. They let me just stand in there, breathe in all the childhood that I am missing right now. Yes, it hasn't even been a week, but my children are all I've ever wanted in my life, and if I lose it all else, I'll still have them, and I'll still be complete.

But the store is closed today, so I stood outside the windows for a bit, then went into Starbucks and saw a woman outside walking the fattest old yellow lab I've ever seen. So I went outside and ran after her, asked if I could pet the dog and loved up on that lab like it's never been loved on before. Two soldiers were out there smoking, they too, loved up on the old girl. The lady said she's a farm dog, but has good manners so got to come to town today, and she may never get the dog to go home because of all the love she's gotten today. I don't want her too. I let the dog lick my hands until they were sopping, still isn't like the drool I get from my hounds. I miss them so.

Being away from home is hard. Giving up all the control to others is harder. Not knowing when I'll see my children, just being marooned here is hard. Being in pain, being scared, sad and lonely is hard.

Some people have been here for months, some just a few days. But we are all connected by the fact that we are all unwell, in varying degrees, and we've all come here as the last ditch effort to save and/or improve our lives.

In the last couple of weeks the pain I live in has become unbearable. Friday I was at Dr. E's office, getting the last of my test results back and planning on the surgery which will probably be on Tuesday. His nurse Colleen (her real name) was so wonderful, she called my cell earlier to check on me, and was showing me a shortcut back to the hotel when that pesky stone that was in my right ureter flared up again. it's a small one, but I'm so worn out and hypersensitive, it brought me to my knees. I crumpled to the floor and started sobbing "this is what I live with every day"

I had my second ambulance ride in as many days, taking me to the ER. They had a full house, but put me on the top of the list, and after 4 tries, they got an IV in me with a huge dose of drugs. Still the pain persisted, so they kept me overnight in an observation unit hooked up to a Fentanyl PCA. In the morning I told the Dr that even though I'd probably be better off staying at the hospital on the meds, psychologically, I needed some semblance of control, I needed to go back to the hotel. They let me go, got me a cab and I came back. I stayed in bed all day. People called and I was in and out of my haze, don't remember talking to many of them.

I called for roomservice around 10, got a rueben, that I ended up eating for breakfast. I read through all my medical records and then decided that I needed to leave the room for a while. I might go hang out with the 101 year old lady, or I might stay here and blog, I don't know.

Life is so fragile at times, it makes me sad. I'm scared of this surgery coming up, but what other options do I have? This is my last chance at normal. And even with this, I will still have Loin Pain Hematuria Syndrome, I just wont' feel it since the right kidney was denervated. We just have to pray that it won't spread to the left kidney.

I had a transitional cell papillary carcinoma of the bladder at age 29. This normally is seen in black male smokers over 50. I was white female non-smoker under 30, less than 1 tenth of 1 percent chance of getting that. Now I have been diagnosed with a syndrome that has affected less than 500 people EVER. And I am only the 10th person here at Mayo that Dr. Sarducci has ever done it on.

Couldn't I be extraordinary in another way? Like, say, winning the lottery?

Typing this out has helped. It is so hard, not being with my babies, not being with my dogs, being stuck in a strange city, having a rare disorder and having an even more rare and drastic surgery in the hopes that this solves my problem.

I want to go home and live my life. The fear that my kidney will not make it through the operation scares me, the thought of living with my remaining 1/2 a kidney, or being on dialysis is terrifying. But if I don't take that chance, all we can be sure of is that I'll be a narcotic mess for the rest of my life.

Oh the decisions we must make.

hold the Mayo, please

ah yeah, the BDU clad people. Seems there is a reserve base or soldier factory up near LaCrosse WI, as the motel I eventually stayed at was completely full of soldiers. So the next morning as I prepared to leave, I didn't need to drag my luggage, coffee was poured and given to me and my car was loaded for me.

I love men in uniform.

So, I visited with the transplant surgeon, who is Italian. He was telling me about the very serious surgery I'm probably facing, and it was all I could do to keep from giggling because he sounded just like Father Guido Sarducci. I've decided to name him Dr. Sarducci.

I will find out on Friday morning, after I talk to Dr E when all my test results are back in, but it sounds like they are going to do a surgery, autotransplantation. Where they take my kidney out, severing all the nerves, then cleaning it up and putting it back in my abdomen. It has an 80% success rate. It scares me a bit, as it should. I wonder if I'll ever get out of here, talking to Bug today she sounded sad and said "I don't think you're ever going to come home" Broke my heart it did.

So, I went out and found a mom and pop convenience store here in the overpriced downtown Rochester and bought up their only two jars of Vlasic Kosher Dill Pickles. mmmmmm pickles................

more to come as the mind races with fears and worries, and lots of nonsensical free-associative thoughts.

Mayo on the Sandwich of Life

And so it is that my medical mystery has taken me to the Mayo Clinic. I'm blogging from the business center of the Kahler Grand Hotel. A nice, if pricey, full service hotel directly across the street from the Mayo Clinic Gonda Building. Next to the Mayo Clinic Eisenberg building, and down the block and across the street from the Hilton building. I can walk to everything, which is nice, and the lady at the Merle Norman shop offered me a free facial since I'm a Mayo patient. Oh, Oh, and I get free parking.

The badnews, the ancient laptop that goes with me on hospital stays, well, the ethernet card seems to be alive....the lights flicker on and off on it, but no connection thar be. So I hooked up via dial up last night, but found out that there is a charge for local calls. 800 numbers are free for the first 45 minutes, so I'll have to see if Road Runner has an 800 number to connect to.

I'd also like to say that my trip was uneventful, for the most part. I demanded that Super G stay home, as his mother was coming to take care of the kids, but I knew that I would do nothing but worry about my babies if he were here with me. SO, I drove it alone.

My appointment was on Wednesday, August 20, which is the day after the first day of school for Bug. So, we put Bug on the bus Tuesday morning and then I went and left for Rochester. It's about a 12 hour drive. I did okay, until I hit the Champaign/Urbana area of Illinois. That was when the pain started. I pulled off at a rest area, took some percocet and curled up in the car until it kicked in. Then I pulled the most boneheaded move of my life. I left the bottle of percocet on the shelf in the rest area bathroom.

I didn't realize that I had done such a stupid thing until I got to Rockford, several hours later. The percocet began to wear off and suddenly life sucked. I kept on going until I saw the blue "H" sign in the Spark county area of Wisconsin. I pulled off, found the podunk hospital. Went to the ER, I noticed a lot of people in BDUs (Battle Dress Uniform), this will come into play later. They gave me a shot of Toradol and let me rest for a few hours. Then I continued on, but about 20 miles east of LaCross, with only about 90 minutes left on my trip, I could take no more and found a motel.

The American Inn had one room left, a two room suite, that the manager gave me for the standard room rate, bless his heart. I slept like a rock, got up at 7am and headed for Rochester.

I'd like to say right now, that the mosquitos here are HUGE!!!! They don't just suck your blood, they shake you down first. Holy cow, when the bugs up here hit your windshield you just have to pray that the structural integrity of the front of your car remains intact, and you brace for the next impact. I always thought that Texas had some big ass bugs, but the quantity of large unidentifiable bugs here rivals any giant flying tree roach they have in the greater Dallas-Ft. Worth area.

Having said that, the Mississippi River crossing at LaCrosse, and subsequent interstate journey along the shore was very beautiful, especially at sunrise. Very tranquil.

The staff at the medical clinics were so nice, and I finally met with Dr. E. A tall, skinny man, with wild white hair and a goatee, he was very compassionate. We went through my entire history, and he even braved the two pound stack of records I brought with me, to find out what my stones are composed of. To my surprise they were not calcium oxalate, as I had been led to believe, but rather calcium phosphate. Highly unusual.

So I've peed in a million different cups, had my blood drawn and he gave me some oral pain meds to help me while I'm here. They are checking for everything under the sun and today I'm being sent to see a transplant specialist who has an interest in a very rare, exceedingly obscure disorder Loin Pain Hematuria Syndrome. Figures, that the only real explaination is some syndrome that no one has heard of, and that there is no effective treatment for other than pain management.

I'm sure there will be more missives later, but for now I'm bored and lonely and miss my babies so much.

Violent lubricating Jelly? or, A Clockwork KY.

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