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Well this is it. THE Month (hence the new masthead). I can no longer say I’m donating "next" month. It’s here. Up close and personal. Holy hell am I scared. Coincidently, it’s also National Kidney Month and March 13 is World Kidney Day. An entire month (and day) dedicated to spreading the word about Kidney disease, and providing free testing in some cities.
So the timeline for my donation is like this:
- March 3rd – Last day for carbonation. Beginning March 4th I can’t have soda, beer, champagne, or anything with bubbles. No soda for two weeks! That alone might kill me.
- March 8th – Last day for medication. Starting the 9th I can’t have any type of medication. No Advil, Tylenol, cold medicine, nothing.
- March 14th – Last day at work.
- March 17th – Begin 48 hour clear liquid diet. Chicken broth and water for 48 hours. Woohoo!
- March 19th – Hospital Check-in & Surgery.
After that, things are a little up in the air. Provided everything goes well in surgery, I should be released sometime within 24 to 48 hours. I can’t drive for a week or so after surgery, so that part is going to suck. At least I’ll have plenty of time to keep up on my blogging! The last time I had surgery, I went home the same day. I’ve never stayed the night in the hospital, so that part is a little scary (on top of the whole terrifying removal of an organ thing). Kelly will be in there for 5 or 6 days, so I suppose I should stop my whining. I’m trying to remind myself that worrying about the surgery won’t change anything. UCLA has one of the best transplant programs in the nation, so I should have nothing to worry about. Yes, there is the possibility of complications, but nothing they can’t handle, I’m sure. Logically, I understand that. Emotionally, I’m still a wreck. My plan is to keep busy over the next couple weeks. Extra trips to the gym, more time out with my friends, and lots of shopping for comfy post-surgery clothes. Like I said, I’ve never stayed overnight in the hospital, so if anyone has any suggestions on what I should bring (in case my stay is longer than one night) I’d be greatly appreciative.
16 days and counting…
Yesterday was the very last time I had to be at UCLA for testing before the Big Show on the 19th. Kelly and I had to be there at 7am to get blood drawn, so we drove up there Sunday night and got a hotel room. At 6:15 Monday morning the alarm went off and we both glared at it. We shuffled off to the hospital and finally got to the lab about 7:10. They made us wait almost an hour to get blood drawn, and then we were sent upstairs to meet with the nephrologists who will be doing our surgery. We both met with her surgeon, who looked like a nerdy version of Bob Saget. He didn’t really have much to say to me, since I’m not his patient. Then we met with the director of the transplant program. The best thing I can say about him is that he could use a little lesson in tact.
Now, I might come off as a bit of a hypocrite here, as I’ve had my tactless moments, but I can honestly say that 99% of the time I DO make an effort to exercise tact when I speak, even if I don’t when I think. The director was looking over my charts, noted my height and weight, and asked me if I’d lost any weight since the last time I was there. I answered honestly, no, but I have lost inches. He says to me "Well, you’re a little bit of a fat girl, and <something about losing weight>" I was so shocked that I missed the second half of the sentence. Look, I’m overweight. I’ve openly admitted that from the beginning. But where the hell does he get off telling me I’m a "little bit of a fat girl?" I really wanted to come back with "Well, my surgeon says I’m ‘skinny on the inside’, so fuck off," but I didn’t think that would go over well. The last thing I wanted was to have to go out to the waiting room and tell Kelly the surgery was off because I mouthed off to the transplant director. So I sat there cursing him in my head while he explained that he wants me to lose weight even after surgery because overweight people have a higher risk of kidney disease. Fine. That makes sense. But for pity’s sake, don’t call me fat.
It took me a while to get over that (and while writing this more than 36 hours later, it appears I’m not quite over it). I realize now that he probably (I hope) didn’t mean for it to come out the way it did. I told everyone at work about it, because I thought that if we joked about it, the hurt I felt would go away. Didn’t seem to work much. It shouldn’t bother me. I’m trying very hard not to let it bother me. But the guy just came right out and said I was fat. Jackass.
Last April, after my original testing for donation, I had a very strange dream. I dreamt that I was in surgery, but the doctors had made a mistake. Instead of taking my kidney, they took my left lung. And instead of closing me up, they left a big gaping hole in my back that just oozed blood everywhere. It left a very scary visual in my head, but the concept was hilarious to me. It looked a little bit like a cannon ball had been shot into my back, and I just never noticed. I’m not entirely sure why that was funny, but it cracked me up.
That dream came back last night, only this time it wasn’t so funny. This time it included pain and screaming, and doctors laughing at me. I jolted awake and had a really rough time falling back asleep. I think I’m more scared of this donation that I’m admitting. Which is doubly frightening, since I thought I was being pretty forthcoming about how terrified I am. Obviously, my subconscious feels differently. It’s ok to be scared. I know that. I’m not ashamed of being scared at all. I just wish I could be scared and not have nightmares about it. Or that I could find a healthy way to express my fear, rather than internalizing it and having it show up in nightmares. Apparently, blogging and/or talking about it isn’t helping, like I thought it would.
I know there have been some new readers to this blog lately, so I’m wondering if any of you (or any of my regulars. I still love you!) have donated an organ, or know someone who donated. How did you/they handle the fear? How did family and friends feel about the donation? If you feel uncomfortable posting a comment for all the world to see, please feel free to e-mail me privately at thedenora at gmail dot com.
It’s 3am, and I can’t sleep. I know I fell asleep shortly after 1am, because Bull Durham had just come on TV, and Jas made a comment about it as I was drifting off. At 2:33, a large hand smacked down directly on my forehead and jarred me awake. This is not the first time this has happened to me, and let me assure you, it doesn’t get less frustrating as time goes on. I tried going back to sleep, but my brain is awake and feeling chatty. A swarm of random thoughts (turtles, dinos, and DUCKS, Allie!) are keeping me awake, and rather than lay in bed trying to get to sleep in my usual futile fashion, I thought I’d get some of it out here, and then go back to bed. (Keep the time in mind in case sentences make no sense)
March 19 is the date that has been set for the kidney donation surgery. That is 43 days from today (I only waited about 37 seconds after I had the date to whip out a calendar and count). I had been eagerly looking forward to receiving a date, so I could schedule my life around it. I now wish I didn’t have a date yet. From the moment Kelly called me to tell me when we’re scheduled, I’ve had a pit in my stomach. I am scared to death. I was pretty scared before, but was able to calmly and logically remind myself that the positives largely outweigh the negatives, and that I’d be fine. Calm and logic have now left the building. I am terrified, and can’t seem to talk myself down from the ledge. Before it was just “Oh I have surgery sometime in March.” Now there’s a specific date and time and it’s all very very real. When I first posted about donating, I was very very hard on “Lisa” and how she handled backing out of the surgery. I still think how she went about it was really wrong (a voicemail? are you serious?), but I’m becoming much more understanding of why she did it. I remember being a little upset at a commenter who suggested forgiveness might be something to keep in mind. How could I forgive someone who did that to my friend? Now I have a little more perspective, and I think the commenter was right. Lisa didn’t have the support system that I have, as her family was very vocal about their opposition to her decision. That can’t have been easy for her. Add to that the enormity of this decision, and all the emotions that come along for the ride. At the time, all I could see was how she had hurt Kelly, and I reacted without considering how she must have felt. So I apologize for the not-so-nice way I responded to that commenter in my head. I didn’t really mean what I thought (be glad you weren’t privy to it), and thank you for making me think about my reaction now. It’s 2 months later, but better late than never, right?
I bowl every Friday night with my friend Jenn, and two friends of hers. I know most of the people in the league by name, and a few I’ll even say hi to, since they’re friends of my teammates. But I generally stick on my own lane with my teammates, and don’t socialize with anyone else. Last night something weird happened. Jas was subbing on a different team with Jenn’s friends. About an hour after we started, one of them came over with tears in her eyes, and said that Jas had told her about my donating a kidney. She was also suffering from the same disease that Kelly is, and was very touched by my donation. She hugged me and then walked back over to her lanes.
The fact that Jas said anything about the donation caught me totally off guard. It’s not something he talks about with me at all. I’ve asked him on several occasions how he feels about it, or if he has any questions, and all I get is "It’s your kidney." Well, yes, true, it’s my kidney, but it bothers me a little that he’s not more interested in what’s happening or what’s going to happen. Some say that he’s probably nervous about it, and this is just his way of coping. Which makes sense. He hates doctors, and avoids them at all cost. It makes sense that he wouldn’t want to talk about a major surgical procedure. I just wish he’d be a little more forthcoming about how it makes him feel.
I’m not an outwardly emotional person, and I don’t at all know how to handle people who cry. I generally keep that stuff inside (but if you could see the swirls of emotion inside my head, you’d be a little scared.) I certainly never know what to say to people when they tell me that I’m doing a great/brave/wonderful/<insert adjective of choice here> thing for Kelly. I’m almost embarrassed to tell people about it, because I don’t know how to react to that. Thanks? Glad I could help? To me, it doesn’t seem like that big a deal. Ok, I know that surgery is a huge deal, and not something to be taken lightly. And I know that there are millions of people in the world that won’t donate for one reason or another (hence the thousands of people on the waiting list for organs). But this just doesn’t seem like something to be gushed about or congratulated on. I’m helping one person. Saving one life. What about the men and women in the police force or fire stations that save multiple lives every day? What about the doctors and nurses and teachers and social workers and coaches and military personnel, and all the other people on the planet that save millions of lives over their collective lifetimes? Why don’t we thank them? Yeah, that police man gave you a ticket for speeding. But what if he hadn’t and 3 miles down the road you lost control and lost your life? What if the firefighter thought someone else could do his job today, and wasn’t there to pull your child from the burning house? Those are the real heroes. When was the last time someone thanked them for all they do for us?
Yes, I’m vastly improving the quality of life for one person, and I am so incredibly thankful that I can do it for her. But it makes me uncomfortable when people tell me it’s a good thing to do, or that I’m a brave person. People do good and brave things every day. It’s their job. I’m not special. They are.
Today I went in to the gynecologist to get my ultrasound on that left ovarian cyst. I get there 10 minutes early, pay my $30 co-pay, and get called in at exactly my appointment time. That’s where the good part ends. I sit in the exam room for 45 minutes, waiting for someone to show up. I don’t know if they were backed up, or if they just forgot about me, but I was a wee bit agitated by the time the doctor came in.
We chat for 2 minutes, and she says “I can’t do your ultrasound today.” Um, what? The whole point of me calling 3 weeks ago and scheduling for today was so I could get this taken care of. I even told them over the phone what exactly I needed to have done, and they conferred with the doctor before setting the appointment. Apparently, they need to do an ultrasound when I’m at a different point in my monthly cycle, so they can compare with the original findings. Fine. I understand that. Is that not a policy that could be explained to me 3 weeks ago when I made the appointment? I would have gladly postponed a week and saved myself the time off work and the extra $30 I had to pay. Now I have to miss work, again, to go back and start this stupid thing all over.
I’m sure there’s a very logical, reasonable reason for the mistake. People make them. I do it all the time. I’m just agitated at the incredible inconvenience I was put through, and she didn’t even have the decency to fake an apology.
Yesterday was the meeting with my surgeon. Since it took me THREE hours to go 65 miles, I was late for the appointment, and was terrified they were going to make me reschedule. The receptionist took pity on me, however, and I was seen almost immediately. The doctor who came in wasn’t the doctor I was expecting, but I liked him anyway. He took a quick medical history from me (I don’t get why they do that EVERY time I come in. Isn’t all the information in the file already?), and then got down to business. We started talking about my weight, and how it’s not ideal, and that I need to have a BMI of 30 or less (I’m currently 30.8, according to him). I must have made a face when he mentioned the BMI, because he paused and asked me what I was thinking. I explained my loathing for the BMI and how it’s not fair, and doesn’t take in to account muscle mass, body type, age, gender, etc. I was amazed when he totally agreed. He used Shaq as an example. According to the BMI, he’s about a 38, which is morbidly obese. However, when you look at him, you can see that the weight is muscle, not fat, and therefore he gets a pass. I, however, am not all that muscular (I am, it’s just buried under the fat), so therefore I need to lose weight. He agreed that I’m not obese, as the BMI says I am, but I am overweight, and that’s a slight problem. So until I lose 10-15 more pounds (preferably 15), he’s not clearing me for surgery. I was devastated. I nearly started to cry. The reason I can’t donate is because I’m too fat? Are you kidding me? He said all I had to do was lose the weight and then call them and they’d schedule surgery. He made it sound like no big deal, but inside I was dying. I felt like I’d totally let Kelly down.
Then he starts in on all the bad things that could happen during surgery. Infections, hematomas, lymph leaks, death, etc. Quite the upbeat conversation. That part doesn’t really bother me. I could just as easily get hit be a truck on the way back home after my appointment, and I told him so. He tried to tell me that it’s different. I don’t have to have surgery, and put myself at risk for these complications, but that I have to drive home. I disagreed. I don’t have to do anything. Every time I wake up, I make a choice to get up, drive to work, do my thing, and drive home. I don’t HAVE to work, but my life is a helluva lot nicer because I do. He paused for a sec, thinking about it, and then said I was right (yay me!). So he finishes his spiel, and says to hang on, because the chief surgeon wants to come in and meet me. While I’m waiting, I send Kelly a text: "Too Fat. They won’t clear me for surgery until I lose 10-15 pounds. I’m so sorry." It didn’t go through, since I was in the underground portion of the hospital, which just upset me more. I stood up to pace in the room, and as I turned around, the doctor came back. "I checked your CT Scan again, and you are very skinny on the inside. So I’m changing my decision and I’m clearing you for surgery." I’m fairly certain my eyes bugged out of my head. Skinny on the inside? Is there a greater phrase than that? He said he still wants me to keep trying to lose weight before the surgery, but they won’t postpone it if I don’t. HOORAY! I nearly tap danced out the door and back up to the main level. I was so grateful that the text to Kelly hadn’t gone through. I wouldn’t have wanted her to go through the emotional roller coaster I was just on. I called her and told her the great news, and she was just as excited as I am. (Still feels weird to be excited about a surgery, by the way). Our transplant coordinator is trying to schedule us for the beginning of March, or even late February if possible. So I have a month to drop 10-15 pounds, just to prove that I can do it.
Surgery, here we come!
(Let’s just pretend it hasn’t been a week since I’ve posted, shall we?)
My meeting with the surgeons is scheduled for Friday. Can I just tell you how much that scares me? I mean, I knew it was coming. I’d even called to try and get it done sooner, because they were originally not going to see me until February. But it’s next week! I think it’s the title that scares me. In my head it sounds much more like Attack of the Surgeons! I’ve already been warned that they’re going to do everything within their power to scare the hell out of me. They want people who are serious about this, and not people who are going to back out at the last second. (Although that didn’t work so well the last time.) I really don’t think there’s a whole lot they can tell me that’s going to scare me further. Yeah, I can die. I could also be in a car wreck tomorrow and have the same fate. I could get an infection and stay in the hospital longer than normal. That would suck, but I’d manage (more vacation from work!). I could develop kidney problems when I’m older and go on dialysis. That’s true even if I don’t donate a kidney. Really, I’ve thought this through completely. I don’t understand how someone could go into this and not over analyze it like I have, but apparently that happens. I’m prepared. Scared to death, but totally prepared. I hope.
I started my workouts with a new personal trainer on Wednesday, and I already feel better about my weight loss path. I haven’t lost a pound since I started training. Not a single one. In fact, despite my mass consumption of water, my resolve to only eat healthy foods, and my 5 days a week cardio program, I have GAINED weight. What the hell? I can’t figure out why. So I explained this all to Mike, my new personal trainer, and together we came up with a plan. Already this is a vast improvement over the last guy, who never asked me anything about what I wanted out of this training, and just dumped me on a machine so I could work and he could watch the hot chicks wandering around. (Sidenote: Am I the only one who is completely intimidated by the hot chicks at the gym? I always picture them thinking “Oh look at the poor fat girl.” I know this is my insecurity rearing it’s ugly head, but please someone tell me that I’m not the only one. Lie if you must.) Mike, on the other hand, didn’t have me do anything until we went over what my goals were. I don’t want to be able lift a car. I want to lose weight, and firm up the leftover skin. That’s about it. I need to lose 15 pounds to meet UCLA’s requirements (They changed my goal weight to 5 pounds less than the original weight. I think they’re trying to make me cry.) and I don’t want my triceps flapping in the wind when I wave hello to someone. I also store most of my fat in my thighs and stomach, so I wanted to concentrate there. So he designed a program to fit my needs, and off we went! He pays attention to me when we’re working together, and he’s pretty damn funny. Trust me, trying to do a sit up while laughing hysterically does much more for your abs than doing 100 stomach crunches with a straight face. Try it.
Yesterday, Duke and I took a trip to the Huntington Library to pretend we know anything about photography. It was awesome. They have all these beautiful gardens you can wander through and look at. There’s a Japanese Garden, Desert Garden, Lily Pond, Herb Garden, and Rose Garden, just to name a few. I was most looking forward to the rose garden, but was disappointed to find that January is not Rose season. There are quite a few spots within the grounds that would be perfect for just sitting quietly and reading a book, or having a chat with a friend. In fact, I’m very much tempted to go back and pay the $20 entrance fee (thieves!) to do just that. There was one particular spot that was so blissfully peaceful, I just wanted to lay down and take a nap right there in the middle of the grass. But alas, I could not, for a stampede of loud children descended upon the place and shattered all the blissful peaciness (yes, peaciness, because I am The Denora: Inventor of Words that Shouldn’t Exist). Altogether, the three hours we spent there were some of the best hours I’ve had recently. As I’ve written before, I always enjoy hanging out with Duke, and today was no exception. I sure wish we could do it more often.
I leave you with some of my favorite photos from our excursion. They’re not retouched, nor anything spectacular. Just the ones that made me smile.
Well, it turns out I’m not crazy. At least not according to the psychiatrist I met with on Wednesday. He’s writing a glowing letter to the donation committee telling them that I’d be a wonderful candidate for donation. Yay! The evaluation took all of 20 minutes. He asked all the expected questions, and some that were a little weird. Apparently, sometimes after surgery a patient can become very confused and not remember exactly who they are. I’d never heard that before, but that’s what he said. Hearing that, I thought it meant he was going to ask questions about me. Likes, dislikes, education experience, etc. Boy was I wrong. He wanted me to interpret cliches (People in glass houses shouldn’t throw stones, Two heads are better than one, etc), explain similarities between two objects (bikes & cars, trees and flies, rulers & scales, etc.), and name cities in different parts of the world. First three cities in California, then three in the US, three in Europe, three in Asia, and three in Latin America. I rocked the first four categories. And then we came to Latin America. The silence in the room was deafening. I just blanked. Couldn’t think of ANY cities at all. Countries? Sure! I practically named them all. But that wasn’t the damn question. I felt like such an idiot. I finally squeaked out Tijuana, which I was completely not confident about (I couldn’t remember if Mexico was considered part of Latin America. I always equated Latin America with South America, and I knew Mexico wasn’t in South America). The psychiatrist was laughing at me because I was SO upset about not being able to remember any cities. I was so embarrassed. Finally I just gave up. I was certain he was going to fail me. He told me that they perform the same type exams on their medical students, and that I performed better than 95% of them (which, by the way, does not instill me with confidence in the medical staff at UCLA). I felt so relieved! I still felt like an ass for not remembering any friggin cities in Latin America, but at least I passed the exam!
While I was at my appointment with the psychiatrist, the transplant coordinator left me a voice mail with the results of some of my other tests. Everything came back looking great! The only exam they hadn’t received at the time was the CT scan that I had last week. Those results came in on Friday, and they were also good. They did find a small cyst on one of my ovaries, and I have to get it evaluated by a gynecologist. I freaked out a little when she first told me, but she assured me that they are very very common, and that it’s nothing to worry about. Most women have them and never even know it. They shrink and swell with your menstrual cycle, so it’s completely possible that if they’d done the exam the week before or the week after, it never would have shown up on the scan. Alas, since it did, I have to get it checked out via ultrasound with my own doctor. The good news is that UCLA feels it’s such a minor thing, they’re already scheduling me to meet with the surgeons. That’ll be in the beginning of February sometime. I was so excited when she told me that they were going to set up that meeting. I mean it’s weird to get excited about having surgery, but I was so relieved that nothing (major) was wrong with me, and that I’d be able to go through with this. I told anyone who would stand still long enough to hear. Thankfully, I was at work, where everyone knows what’s going on with Kelly, so they were all very excited to hear the good news.
So that’s the most exciting thing that’s happened in the last week. I wish my life was more exciting, because I’d have more to post about. But, hey, giving away an organ is a pretty exciting thing. Maybe that temporarily makes up for the lack of things to post about in other areas.
While being off work 9 days was wonderful, being back at work is…not. I’m so exhausted. I want nothing more than to go back to being on vacation. It’s not like I was lazy while on vacation, either. I traveled, cleaned, did laundry, saw a play, baked 11 dozen cookies, shopped, bowled, got poked and prodded, and spent time at home with my dog and husband. But man, two days of work have nearly killed me. I love my job, don’t get me wrong. But I didn’t think getting back into the swing of things was going to be so difficult. I had trouble focusing on more than one thing at a time, which is a huge handicap in my line of work. I spent most of the time wanting to be back at home, or for some magical fairy to come and finish all my projects. Neither of which was going to happen. So I keep plugging along, hoping for something to click in my brain, so that I can function again.
Part of my distraction lies in my impending Psychiatric Evaluation tomorrow at UCLA. I know I’ll be fine. They’re basically just evaluating me to make sure I’m fit to make this kind of life changing decision for myself. But I, being the eternal pessimist, am nervous. What if I say the wrong thing, or don’t answer the questions properly? I know I’m freaking out over nothing. Logically, I understand that I am over-analyzing and overreacting and that I should shut the hell up and move on. Emotionally? Hello mess! What’s worse is that I’m going to freak out about it all night, not sleep, and then be a total bear tomorrow. (Ok more bearish than usual, thanks.) Sometimes I wish I had a switch so I could just shut off my brain for a while. (Yes, yes. Wide open door for comments. I’m aware.) At least then I could sleep.
I’m supposed to get the results of all my testing on Thursday. This doesn’t mean I find out if I can be a donor, however. This just means the donation coordinator takes a look at my file and lets me know if anything in there could be a problem. I find out if I need to repeat any tests, or if any tests came back with a positive result. (Positive for negative things, that is.) So that’s a little stressful as well. I’m sure I’ll be fine. I keep telling myself I’m fine. I just wish I’d believe me.
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