New Year, Renewed Resolve

I love the new year! Certainly not because of the weather, but I love it because I can feel good about doing all of the the things I put off last year. I keep wanting to catch up on all the blogs I've missed reading as well as doing a little blogging of my own, but now that it's a new year I can start fresh instead of feeling like I have to "catch up". Whew, what a relief! So here I am again folks. Y'all ready for this?! Dun dun dun da da da dun dun dun dun...

Let's see, where to begin.  I'm well into married life and all of the joys and challenges that brings. It will seem sappy but I try to only post details about the positive things my husband does. I"ve learned in the past that when I vent about my significant other, it gives people (especially family) the wrong ideas about that person and casts them in a different, not so flattering, light. Mostly my venting is me not understanding him and vice versa. Once we talk it out and have a better idea, I find the same things that drove me nuts aren't driving me nearly as nuts and then I feel bad for making such a big deal out of it. So don't think that because I post lovely things that I'm trying to make us look perfect. I'm not. And it drives me batty when people do. Makes me kind of want to smack them up their pretty, smiley little heads. Anyway, I'll end this thought with some nice things Jeff did for me this morning. He packed a little lunch for me, went out in the freezing cold to warm up my car, put the lunch in the car so my scatterbrain couldn't forget it, and then started my Keurig (which incidentally was my Christmas present from him. Score!). He does such a good job of keeping me from being late to work.

 Let's see, what else. Oh yeah. I'm obsessed with my dogs. Sorry, it's kind of like I have kids. Anyone who's friends with me on Facebook knows this as the dog pictures outnumber the people pictures like 4 to 1. But lucky for you, they are cute, funny, and very entertaining. On a more somber note, my older dog has lumps all over her belly that the vet is pretty sure are cancerous.


Look close, they're there

So pretty soon here she'll be having surgery. I'll keep you up to date on that one. Cross your fingers for this precious face!

Look how cute I am


In other medical related news, I'll bet you're wondering what's going on in kidney-land. It's been, and still is, a bit of a roller coaster. Everything after the surgery was good. I can't recall if I posted about my experience during recovery. It's full of not so much fun, but good stuff to know if you're ever going to have abdominal surgery. If I didn't, I'll post that soon with a disclaimer about how old it is. In any case, the kidney was doing great, no more dialysis, and things were getting better. Although my dad has seemed to have less energy ever since he first started treatment, that was starting to come back a little. Then the kidney started having some issues. Just not functioning as well. Turns out he has something called the BK Virus which is common in transplant recipients. Ever since, we've kind of been walking two roads. One path has us hoping the treatments for the virus work and the kidney rebounds. The other has us preparing for the need to get a new kidney. So far things are slowly looking good on the virus end. Levels are going down and functionality is going up. But again, it's sloooooowly happening. I'm very hopeful but trying not to get those hopes up too high. During the preperation for the surgery, the doctors warned you could get depressed from losing a piece of your body. I did not, but I do think if that kidney ceased to function that might be another story. We'll just have to take it a test at a time and see what happens.

On the bright side of medical news, all of Jeff's post cancer testing has been good as gold. So woo hoo go team!!!

Well I feel better already. Look at all this progress I"m making. My big project for the month is well under way. Stay tuned to find out what it is and for before and after pictures. Eeeek, I'm excited!

Getting Closer

Just today my anxiety level has risen a tad. It's odd to think about being this close to the procedure. So of course, being the weirdo I am, I decided to freak myself out a little by looking up pictures online. Don't get me wrong, I'm not squeamish, however, once you start imagining this stuff done to you, it gets a little more squeamy. Just to help you out, here are some cool diagrams I found to describe what's going to happen. Don't worry no real pictures although those are out there. I almost thought it looked weirder seeing all the instruments in little tiny holes than the older pictures where they cut the whole side open. I'll explain as we go.

Ok so this is the closest thing to what I'm going to look like that I could find. Although I will be minus the killer muscular physique. Basically you have the little bitty slits on the left where they put in all the laproscopic doodads like the camera, the scalpel, etc. Then there's this incision a few inches long right around the belly button. The good part about this is that a lot of it will get sewn back into the belly button and I'll have minimal scarring there. Anyway, it's called a hand assisted laproscopic nephrectomy which means the doodads do their job to get everything disconnected inside me and the surgeon puts a hand in the longer incision to help the kidney out.

In the olden days, (a whole like 10 years ago) they would make a huge incision in the donor's side from the stomach around to the back. This helped them get to the kidney and pull it out without damaging the organ. Seeing as how it needs to be in pretty good shape leaving the body, it makes sense. But that was longer recovery time, more risk of infection, and more PAIN! All I can say is thank heavens for technology. Laproscopy is about the best invention I can think of as of late.

Now these are diagrams of what's going to happen on my dad's end. He gets a half moon shaped incision on his side and then in goes the kidney. The other two stick around and continue not working. The new guy hangs out on his own closer to the front of the body and starts kicking butt and taking names. Oooo! He can make his own show "Sister Kidneys"! I think I'm on to something there....

Have I mentioned lately how much this stuff blows my mind? I mean seriously! And I was reading articles that there is a way of doing the entire thing through one hole in the belly button. Craaaazy!!

I'm kind of glad I looked at pictures so I have an idea of what's going to happen. I was actually surprised because it seems like there are several variations. In many cases, the longer incision was below the bikini line and they pulled the kidney all the way down there. Some people have 2, 3, 4, 5 or even 6 tiny slits for doodads. (I should have 2-3 according to my doc) Just goes to show there's more than one way to -ectomy a neph. A little medical terminology humor there for ya. ;)

It still does not give me the greatest idea of what to expect with the surgery aspect of things. So at night my brain takes over and starts imagining all kinds of weirdness. I guess it's a good thing we're so close to the big day. Before long there will be no imagination needed!

My technologically advanced way of communicating with the surgeons while I'm knocked out.
"This side please"

Holding My Breath and Counting Down

Big News! The surgery is back on! I was reeeeally hoping to have had it and be recovered by now, but there were minor complications. Here's a breakdown of the whole ordeal to date (for anyone out o' the loop):

• We found out my dad had multiple myeloma and amyloids after he went to the doctor thinking he might have a kidney infection.
• Next there was much unpleasantness involving chemo, dialysis & a bone marrow transplant.
• We waited for his kidney functions to bounce back...they didn't.
• He had a fistula implanted in his arm and has continued dialysis 3 days a week for around 4 hours a pop.
• The doctors said, the kidneys aren't coming back but that the cancer was in remission and he could be a part of the kidney transplant program.
• Cheering all around.
• I decided to see if I was a match after realizing I'm the only immediate family member with the same blood type.
• I was.
• I researched to find out more about what a kidney donor could expect and I found out that while it's majory surgery, not without its risks, it is a lot less scary than I originally thought.
• I then realized I wanted my dad to live a better life and that I was willing to give a up a kidney to keep him around. (and feeling less ill)
• Testing was draaaaaaagged out until we finally got a new coordinator
• Holy cow surgery scheduled for next month! (This was in October)
• 1 week before surgery, "oh by the by, we found a brain tumor." 2 days before the surgery, "Sorry, no surgery."
• Tears, grumbles, and hissy fits all around (ok maybe I was the main hissy fitter)
• Brain surgery - the tumor is benign (oh yeah and it's been there awhile. Just some nice info to have)
• "One month of recovery and you can reschedule"
• One month later..."one more month and you can reschedule"
• A second month later...Come on!! How long does it take to get some friggin paperwork?!

I spoke with our coordinator last week and she mentioned she was able to get the paperwork they were waiting for. I asked her to find out how quickly we could reschedule. That brings us to Monday of this week when she said "Looks like we can get you in on the 9th". I'll give you a second to do the math..
...
...Pencils down please.

Yes! That is exactly 2 weeks. Holy whoa. We both really want to be functional by our birthdays (end of May) and this would be cutting it a liiiittle close. So I called him to see what he thought of that date. There was an unmistakable enthusiasm you would likely only notice if you knew him and recognized it's not his normal tone. It's a quiet, understated but powerful spark that touched my heart. You see, I'd been thinking that maybe we should wait until after birthday month so we can be sure we'll have enough oomph to celebrate. Duh Shannon. I haven't been doing dialysis and feeling miserable, depressed, and sick daily for roughly 2 and a half years now. That spark of hope in his words spoken without so much as a breath after I uttered the date, "Yeah! That will give me enough time to get coverage at work. Tell her that works"...I can't even relay it in type. I guess you had to be there. Point being, I remembered what it was all about. Sure it's been slower than thought and we've had our anticipation shattered once already. It's all been worth it to have the chance to get him well faster. The faster the better. I realize now it wouldn't matter if I had to walk a little slower or take it a little easier on my birthday. I'd have his life as my celebration and nothing beats that.

Yeesh

The title pretty much expresses my feelings at the moment. My poor father cannot seem to catch a break. I just don't know how he deals with everything without falling to pieces. Maybe part of it is that he's a guy and inherently less emotionally strung out. Maybe it's his nursing that helps him see the medical and logical side to his situation. Or hell, maybe he's falling apart and is waaaay better at hiding it than I would be. I have no clue. But as you can probably guess at this point, he's had his follow up appointment with the brain doctor.

It's not the update we were hoping for, but I guess any update is better than no update. The medication he was taking to try to shrink the brain tumor has done nothing. zip, zero, nada. He could keep trying different dosages, but something should have happened at this point. First I'll go all silver lining here and say at least they didn't say the tumor is bigger. That I am grateful for, but the medication did NOTHING. That is, nothing but make him feel sick. Sicker I mean. Ugh. So it's on to surgery. He's scheduled to have the tumor removed on February 8th. If all goes well, we'll be able to start talking about rescheduling kidney surgery about a month after that.

Now personally, when I heard the news, some choice words flew out of my mouth. Luckily I was alone. Anyone with me probably would have been scarred for life. Later that night my parents dropped by my place for a minute. I asked him how he was doing with the news and he just shrugged in a "whatcha gonna do" kind of way. It's true that you do what you can and hope for the best. But how he can keep that point of view being the one who's going through the experience amazes me. The man's an inspiration. All the more reason to do anything to keep him around!

Whyyyyyyy?????

Most of the people who read this blog know at this point that the kidney surgery has been postponed. I was devastated when I found out. Many emotions and tears later, I'm still disappointed, but I have had some time to deal with it and I'm working my way through.

Before I really explain what happened, I think this situation perfectly illustrates some thoughts I've always had regarding "the secret" and the whole law of attraction thing. Now, I believe in the law of attraction, but only to an extent. I do believe in "karma", "what goes around comes around", "do unto others...", and "if you're a good person, good things will happen to you". I do NOT, however, believe that the universe is my "catalog" and that I'm entitled to have everything I want handed over to me if I just assume it's going to happen. I think there is far too much of a sense of entitlement in this day and age with a far smaller percentage of people willing to take ownership of their situations. Why do I bring this up? Because I have been taught a thing or two about positivity and perserverence lately.

I have been about as positive throughout this experience as I've ever been about anything in my life. I've worked hard on banishing all "worst case senario" thoughts from my head. I have done double duty on trying to help others in my family go with the flow and think positively. I've even reached out to God (substitute the universe or another higher power if you prefer) and asked for things to go according to plan. It's ok to ask for things to go according to plan, but more importantly I've discovered the key is to ask for peace and understanding when they don't. Life is not about choosing your desires from a catalog, but instead about appreciating what you are given and learning from the challenges placed before you. I must really need a lesson in patience and taking challenges peacefully because of these most recent events.

To recap, here is what has happened last week:
Everything was prepared for the surgery to take place last Friday. I had work and short term disability sorted out, all of my clients and coworkers had been notified and said goodbye for the time being, I had a little shindig to say goodbye to my kidney with all of my friends, I didn't even grocery shop so I wouldn't get any food that would go bad, etc. etc. On top of that, if the surgery had taken place on time, I would have been sufficiently recovered to be back to work before the holidays, before my boyfriend moves two hours away, and before my sister comes to visit with her kids for Christmas. Perfect right? Maybe that was the problem.

About a week before the surgery, my dad had a normal followup with his cancer doctor. The doctor informed him that the Multiple Myeloma is in remission (yay!), but that he had seen some abnormal activity on a PET scan of his brain (not so yay). I was a little surprised they found any activity up there, abnormal or not. ***Badum bum pshhhh (rimshot)*** So that day he got an MRI done and by that weekend, he was told that he has a benign mass in his brain by the pituitary gland. The mass does not seem to be causing any side effects, but would need to be dealt with at some point. An appointment was set up for the Wednesday before the surgery for him to meet with an ENT surgeon about the mass. The surgeon had consulted with a neurosurgeon and they decided that the mass could wait. The kidney was more important and should be taken care of on schedule. We were thrilled!! Everything was falling into place and those moments of panic seemed behind us. The ENT surgeon said he would call the kidney surgeon to give him the OK to continue. We got a good few hours of warm and fuzzies until the bomb dropped. Near the end of the day, the kidney surgeon called my dad and explained that because of the risk of certain possible complications resulting from a mass near the pituitary, he would not be performing the surgery on Friday. Since that time I have run the gamit of emotions. I still don't fully understand why the surgery absolutely could NOT have taken place, but I am working on accepting that this is something I cannot change. I am trying not to dwell on the fact that my dad is still suffering through dialysis and overall symptoms of kidney failure. It is heartbreaking. Although these thoughts are in my mind at all times, the voice that is telling me that this is all happening for a reason is getting louder little by little. It's hard for me to say "thank goodness they caught this before" since I'm not convinced the risks the kidney doctor brought up were good enough reasons to cancel the surgery. BUT like I said, I'm learning to accept the situation, adapt, and appreciate that none of this news is worse. It could have been so much worse and I'm desperately thankful that it isn't.

At this point we are waiting for one of the surgeons to get back in town so we can schedule the surgery to remove the mass. The ENT surgeon leads tools up through the nasal and sinus cavities. The neurosurgeon then uses scissors to open up the sac surrounding the mass and a small vacuum sucks up the bad tissue. Apparently this procedure is fairly routine with a quick recovery. Many people have these masses their whole lives with no issues and never know about it until an autopsy after their death reveals it. I'm still hoping to reschedule before the end of the year, but at this point I really have no clue when we'll be back on track to donate.

I am not the most patient person and I've always had a rough time with disappointment. As much as my character has been strengthened so far, I have a feeling that I still have a lot to learn. I'm genuinely trying to stay on the positive side instead of letting sadness and bitterness take over. I am fairly proud of how well I'm doing with this so far.

So instead of having surgery, my parents took me and my boyfriend to dinner at Texas Roadhouse (super yum!) on Thursday. Friday, we helped them put up Christmas lights at the house and rake the lawn. On Saturday, my parents, sister, boyfriend, and I went to the gun show in Sandy. My dad was like a kid in a candy store when he got the ok to purchase a russian military rifle he'd had his eye on. Then we all went to the IMAX theater to watch the new Harry Potter flick compliments of my sister. All in all, it was a nice weekend. I was surrounded by others who could relate to the feelings I was having and just being with them was like a balm to my wounded spirit. Dorky, I know, but true. I'm still truly Thankful for how fortunate we have been. I hope that this is the lowest point and that things can only go up from here.

This Just In!

dum da du dum da du dum da dum....(think news music and typewriter sound effects)

Breaking News Folks!!! Ok so maybe it's not exactly "breaking" since I found out on Monday, but my head has been so foggy that I'm struggling with getting the word out. The surgery is scheduled!!! And soon too. I will no longer have 2 kidneys as of the 19th of November. I can hardly wrap my mind around it.

On Monday, my dad had an appointment with his cancer specialist. It was a follow up to see if the myeloma is in remission and to double check that he is still good for surgery. He had gotten a PET scan which showed something abnormal in the glucose metabolism of his pituitary gland. The doctor is not positive, but is pretty sure it's not the cancer since they found that it's in remission everywhere else. So he ordered an MRI to look into the gland and see what is happening. After that, my parents planned to take all of the test results and doctor's notes they had so far over to the transplant clinic to hand deliver them. I decided to meet up with them so I could tag along and hopefully meet the new coordinator. I took the afternoon off and met them up at Huntsman Cancer Institute. My mom told me that clinic had called and asked what we thought about scheduling the surgery for the Monday before Thanksgiving since the Tuesday before was booked. I thought that sounded pretty good. Then, while my dad was finishing up his MRI, they called him again. That time, they asked what we thought about the Friday before. We headed over to the clinic, signed a couple last papers, gave them test results and the bill from the CT scan, and finalized our 19th date. I was hoping we'd finalize a date, but it almost seemed unreal that we actually did. Next Monday I will go in for blood work. They have to be prepared with information about my blood in case I need a transfusion. Then next Wednesday I go in for more pre-op prep. Friday morning, dark and early, we'll be heading up to the Intermountain Medical Center to take care of business.

Like I mentioned before, my head has just been swimming. I'm trying to get Christmas presents taken care of before I'm down for the count. I also need to pack for the 4-5 days I'll be in the hospital (tell me anything you recommend I take!) and for the several weeks I'll be at my parents' recuperating. I have people watching my apartment during that time so don't try any funny stuffs! Plus I want to get a haircut, get together with some friends, get my nails done, etc. so that I feel somewhat good about myself while I'm doped up and laying in bed.

I'm nervous too, but not so much scared-nervous. Crazy things could always happen, but, I have a remarkably peaceful feeling that this is the right thing to do. I was going to say I have a feeling that nothing bad will happen, but that's not 100% honest. I have a slight fear of that still. That feeling, that this is right, somehow completly overshadows the fear and gives me strength.

So wish me luck folks! I'll still keep posting with my experiences, but we're almost to the next leg of the journey (so to speak). Crazy times!

Keeping on Keepin' On

I'm starting to feel like my kidney updates aren't updates at all, but really explanations of why I don't have updates. lol Honestly, though, we're making headway. You may remember from my last post that "C" was outtie 5000 and I was waiting for some news from "B". If you don't remember, check it out here in the Drama post. Well, I got a call from "K" center saying my case had actually been reassigned to "B-2". I call her "B-2" because both the guy they originally mentioned and this girl have names that start with a B. If you hadn't already guess that. (I know, I must think I'm writing for 3 year olds) "K" said she is an assitant director or some other title that begins with assistant. I forgot exactly what. I know, I'm really on a roll today. "K" had reviewed our charts and found that things looked really good. She had one regularly yearly test that she wanted me to sign a release form for so she could get it to my doctor. Of course I did that immediately. Otherwise she said that things looked good and we seemed to be ready to go to the selection committee. It's no secret at this point that I'm a little slow, but I thought it had already gone there. "C" told me weeks ago that it was going before the committee that week. I should have assumed when she kept telling me there were more tests to do, signatures needed, etc. that it meant there was no presentation to the committee. But I just now connected those two dots and my heart sunk a little. "K" was great and assured me that it's really more of a rubber stamp approval. She said our case looked really good. I did a little jig back to my desk (I'd taken the call in the conference room at work) and made everyone look at me funny. That is until I informed them of the good news. "K" was ready to get us on the table!

On my lunch break I spoke to my mom who asked if they had wanted to know anything about my dad's next cancer check up. He's been getting chemo every other week and his doctor previously told him things looked good enough to go ahead with the transplant process. That was back in May, though, and their next checkup is on Monday. Hopefully all is still well enough that he would be ready to stop chemo and get a new kidney. My parents plan on delivering the test results to the kidney center by hand on Monday. My mom called "B-2" who said that nothing about his most recent checkup or the upcoming checkup was mentioned in his chart. Awesome. But, from what my mom said, it doesn't seem that will cause any delay. Barring any crazy badness from that checkup, we're still on track for surgery this month. I was shooting for the week of Thanksgiving because that would work best with me scheduling time off and being back to work, but it seems they're booked that day. yeesh. Instead it might be the week after.

I can't express how exciting it is to actually be talking about scheduling. It's definitely crazy that in just a few short weeks we will finally be going through with the surgery. With doing the surgery this month, we're hoping to both be recovered pretty well by the time my sister comes to visit around Christmas.

I also can't thank everyone enough who has been so supportive during this process. It just lets me know how many wonderful people I have in my life and I couldn't be more thankful. I'm one of the luckiest people I know. Your thoughts and prayers are WORKING!!! Thank you so so so very much!

Whoa Kidney Drama!

Dun..dun...Duuuuuuuuuunnnnnn....Have you been on the edge of your seat waiting to hear the latest and greatest on the kidney front? Well wait no longer! Let me bring you up to speed with a quick update.

When we left off last week, I had talked to the nurse coordinator, *C*. She'd gotten the signature on my paperwork that she was waiting for and she was still waiting for a note from my dad's hematologist. She expected to have it by the end of the week (again) and would call me just as soon as she had it.

Well that was a Tuesday and on Wednesday I was at work when I noticed she'd called...twice. What...the...crap? So unlike her! I hoped nothing was wrong. I gave her a call back and she said she couldn't find my "vitals" test results. In all of my experience with doctors and such, "vitals" has always meant vital signs (blood pressure, etc.). I remember at the start that she mentioned something about needing "vitals", but then promptly forgot about it. I mean they take my vitals every time I visit one of the doctors' offices so I've had them done about a zillion times already. Well when she called I realized we'd never done an official vitals test at the clinic and I thought, hey, no biggie. I told her I'd run in after work and get them done. She told me to go to the lab. hmmmm...ok. Never had vital signs taken at the lab, but sure, why not? When I go there, they bring me back to the blood draw room with 7 (count them, 7) tubes. Naturally my curiousity got the best of me so I asked, what did we miss doing? Apparently, in the kidney donation world, vitals meant blood tests for blood typing, testing for Epstein Barr Virus (EBV, which can indicate if you have or have had mono), testing for syphilis, testing for HIV, and testing for another virus that escapes my memory at this moment. Kind of important things to know before you give someone major surgery. Good news is that I saw my test results online today and everything is negative, except one EBV antibody. I like the Intermountain website because it has a link to a site that explains all the tests, what's normal, etc. That site told me that the antibody I was positive for shows up if you get mono and stays in your system for the rest of your life. The other EBV antibody showed negative and that one is more of an indication if you recently were infected. So from what I gathered, I must have had mono at one time or another in my life. Not all that unusual so I'm not too concerned about that test result. But I'm no doc, so we'll see what they have to say.

I thought, I need to call *C* and get an update since I know the results are in. Then I received an email from my insurance company telling me my claim was processed. Huh? What claim? I look it up and it's the kidney CT and I may owe $93. (I can't remember if I mentioned before, my insurance is not supposed to get billed for any of this.) Well, I thought, I needed to call her anyway so now seems like a good time. I called the office and I asked is *C* available? (for some reason I'm feeling the need now to protect her identity..keep reading for why) They said do you mean *CD*? I said yes, and the receptionist says "oh, she's no longer with us. *B* is taking over her cases" I was shocked. In fact, I'm sure the receptionist could tell because I literally said "huh? umm....ooookaaaayyyy.....weeeeelll...." and kept stumbling for words. I told the receptionist why I was calling and she said "I'll have *B* give you a call when he is available and I'll have you leave a voicemail for our billing guy and he can take care of the insurance mixup". I hung up the phone thoroughly in shock. And then I texted my dad to let him know. He was shocked as well.

New thoughts....Why is she not there? "she's no longer with us" sounds to me like that decision was not hers. However, as I think I've made clear from previous posts, she didn't give off warm fuzzies about being in that position either. So it could have entirely been her choice. It's impossible to guess what happened, but I'm just nosey enough to be reeeeally curious.

Is this a good thing or a bad thing? Only time will tell. I can hope that *B* is slightly more proactive and gives off the sense of urgency that I've been feeling is missing. But of course I won't know until I talk to him. Now if her absence is not her choice, was there something in her performance that caused her dismissal? If so, does this mean that I can't trust what I've been told about where our case is today? Ugh, just the thought of that stresses me out. I soooo don't want more delays. Of course, I want everything to be as accurate as possible so if delays are necessary, then so be it. But it doesn't make me want them.

****DISCLAIMER****** All of my feelings above are my initial, knee-jerk reactionary conjectures. I literally started writing this directly after getting off that phone call. None of my thoughts are based on any real information. The clinic did not divulge any info they shouldn't have. There are a million reasons why *C* could be gone, many of them perfectly benign. In other words, I have no clue why she's gone. I'm just shocked and confused.***End of DISCLAIMER****

So we'll see more when I talk to *B*, but here's hoping things start moving along at a more fitting pace.

The Waiting Game

Kidney Donation Update.....we're still waiting. I called last week and the nurse coordinator said that one of my doctors had to sign a report and that she needed a note from my dad's hematologist. Later that day my dad talked to her and gave her a contact name at the hematologist's office. She said she should have everything by the end of last week so I called again today (hoping to have an updated to post). She got the signature, but not the note. So she said she'd be calling the hematologist again today and she'd call me as soon as she gets it.

I'm going to get a little candid here. I have mixed feelings about this. I don't want to be unreasonable. I only call her maybe once a week and when I do I just ask for an update, not chew her out for not calling me yet. I don't know if it's just her normal tone, but I feel like she's sort of annoyed whenever I call. Also, I cannot think of a time that she has called me without me soliciting her to do so. Usually I have to call and leave a message or two before I actually have her on the phone. She hasn't been very proactive in other words.

I realize that as a coordinator, (I am one too, just for programs instead of kidneys) a lot of your job is dependant on other people. Other people can make you seem unresponsive when the truth is, it is them you are waiting on. At the same time, though, this can be an easy scapegoat. If you feel guilty you're not being as responsive as you should be, you can always say someone else is holding things up. There's a lot involved in this very serious process. I don't want things rushed that should have more attention (ie. interpreting tests, etc.), however, I do want to feel like our case is being handled with a sense of urgency. I know that every case should have urgency in this field of work and it must be hard to keep up with that. Even still, I can't help but get a little agitated that we're not to the point of scheduling the surgery yet. Until it's scheduled I won't feel like it's official and getting that "stamp" of approval would help relieve some of my anxiety. I don't have enough insight to be able to pass a detailed judgement on how the process is going for us, but based on my instincts, I'm not thrilled with where we are.

I'm glad I'm keeping this record because I have to wonder if other donors and recipients go through this same thing. None of these types of details were in the donor experiences I read. Is this normal or did we draw the short straw? Hopefully my experience will help other people down the road.

Want to know what I've been up to while waiting? Have look here!

Gotta go gotta go gotta go right now...

This morning was the kidney CT. I've never had a CAT scan before so the lady was super sweet and explained in detail what I can expect as she was doing it. For the benefit of anyone else who's never had one, here was my experience.

1. Get a voicemail from Intermountain registration yesterday asking to call them back. Call back and give them every piece of contact info they can think to ask for. Get asked for insurance. Tell the guy, no you don't need it, I'm donating a kidney. Listen to the guy say, well they're going to ask you for it again tomorrow. Roll eyes.

2. Go into Intermountain radiology. Type my name in the computer & scan my express pass. (This supposedly makes the process faster. I've yet to figure out how.) Get a little buzzer guy and go sit down. Buzzer goes off so go over to the desk. Give them all of the exact same info you did on the phone, except not asked for insurance. Thank heavens. That would have been annoying. 

3. Sit in another waiting room. (I'm making the waiting part sound worse than it was. My appointment was early enough that the waits weren't too long. When I left, though, both waiting rooms were packed!)

4. Called back and given scrub bottoms and a gown that are somewhere around the size XXXXL. Apparently the circus tent company was the lowest bidder for those puppies. Take off the majority of my clothing and put it in a little locker. Then sit in another waiting room...feeling naked....because the clothes are so big they don't even touch my skin. Envision trying to make adult scrubs fit a 4 year old and you've pretty much got the right proportions. 

5. Called back to the CAT scan machine. Cute Patsy (the tech) gave me a heated blanket before I could even tell her I was cold. She rocked. Then I laid down on the bed of the machine while she put an IV in my arm. That was the best IV experience I think I've ever had (out of my whole 2 IV experiences). It hurt less than getting my blood drawn has. Again, she rocked. She put a little saline through which made my mouth and nose taste like snot. She said it would taste salty but it reminded me more of mucous. lol Then I put my arms above my head while they took some pictures without contrast. Next she pumped through the contrast and told me it would feel really warm and that I would feel like I was peeing, but to worry because I'm not. I'm so glad she warned me about that because it felt exactly like that. Soooo bizarre. And then my whole body was feeling flushed and hot. I got dizzy and almost felt like I would black out, but of course I didn't. I could mainly feel the heat in my hands (pretty much on the palm below my fingers) and in my feet. It was the oddest sensation. Then they took a bunch more pictures. By taking pictures, I mean I went multiple times through the Stargate. The giant ring has something inside that starts spinning uber fast and I half expected my feet to feel the sands of another planet. 

After that it was all over and back to life. I have to drink extra water to flush out the dye, though. She made a comment that made me wonder. My wondering led to marveling at modern medicine. I have the results already people. She said they'd have them to the doctor by Friday but that I could see them any time. That reminded me you can see results online. I looked it up thinking for sure nothing would be there yet. Not so! For your viewing pleasure, here are my results. I'd like to point out how entertained I am by the fact that they noted my scoliosis. How nice would it have been to get this done earlier in the year before I paid for an xray to find out?

Dictated By CONNER, KAREN E.


Status Final

Location Intermountain Medical Center

Date 09/22/2010

CT angiogram of the abdomen, without and with IV contrast

Date: 9/22/2010

Comparison: No comparison

History: Pre Renal transplant donor. Evaluate kidneys. Patient
is a 27-year-old female.

Procedure: Noncontrast helical scanning was performed through the
kidneys. Following uneventful administration of 100 mL Isovue-370
intravenous contrast, helical scanning was performed through the
abdomen during arterial phase of enhancement with thin
reconstruction through the aorta and renal arteries. Following
this, repeat helical scanning was performed through the abdomen
during portal venous phase. Delayed images are obtained through
the kidneys. Image postprocessing was utilized to create sagittal
and coronal MIPs of the aorta and renal arteries. Additional
volume rendered images were created of the abdominal aorta, renal
arteries, and kidneys.

Findings:

Noncontrast: There is rotatory levoscoliosis of the
thoracolumbar spine. No significant degenerative changes seen. No
calcifications are seen within either kidney. The kidneys
demonstrate normal cortical and medullary density. No
hydronephrosis is seen. Lung bases demonstrate asymmetry of the
thoracic cavity secondary to the scoliosis but no other
significant abnormality.

Contrast-enhanced: Arterial phase imaging demonstrates a single
bilateral renal artery. There is no renal artery stenosis or
significant narrowing. Venous phase imaging demonstrates a normal
left renal vein.The kidneys enhance a normally. Delayed images demonstrate normal
and symmetric excretion of contrast. Visualized proximal ureters
are unremarkable.

The liver, spleen, pancreas, gallbladder, and adrenal glands are
unremarkable. Visualized loops of bowel are within normal limits.
An appendix is partially visualized anterior to the right psoas
muscle. No lymphadenopathy is seen. Other vascular structures are
unremarkable. There is standard hepatic arterial branching
anatomy. Two small splenules are incidentally noted inferior to
the splenic tip. No free fluid is seen. Osseous structures are
otherwise unremarkable.

Impression:

1. Normal appearing bilateral kidneys with a single renal artery
to each kidney identified.


2. Rotatory levoscoliosis to the thoracic spine but otherwise
unremarkable CT of the abdomen.

What's a splenule you might ask? I asked that myself! So I looked it up:

Accessory spleens, also known as splenules, are congenital foci of splenic tissue that are anatomically distinct from the spleen. Embryologically, they represent failure of fusion of the splenic anlage, located in the dorsal mesogastrium, during the fifth week of fetal life. Splenules are not uncommon, 10-30% of autopsies, but are typically asymptomatic.

So Close, Yet So Far Away

Holy cow things are moving right along in kidney land. It's amazing how in between all the tests I feel like so much time has passed, but looking back I realize it's actually gone pretty quick. At this point I'm rarin' to get er done! I just talked to the coordinator assistant and basically I have one more test and a surgical consult. I am scheduled for a kidney CT (CAT scan of my kidney) on Wednesday morning. Which works out well because you can't eat or drink anything, but clear liquids for 2 hours before. This way I can pretty much wake up, head over there and then go to work. Easy peasy. Then on Thursday morning I have the surgical consult. From what I understand, he'll review my CT results and decide if I'm good to go. I asked what will happen after that and she said that every Wednesday is when the board meets. Cathy, the coordinator, would present my case officially to them next week and they would review all my tests. Once they give the OK, which I should know later next week, I'd be ready to schedule surgery. Of course that is if my dad is ready too. Last I checked with him he wasn't sure what more he would have to do before being ready so I asked if they could call him with an update and they said sure. Crazy times!! But the good kind of crazy. In fact I feel like I'm crazy for being so excited about it. Of course I'm still incredibly nervous, but I am excited at the same time. I'm thinking about this time last year and how different my concerns were. So much changes so quickly and reminds you what's really important in life.

Wouldntcha Knowit?

I realize this is a bit of a delayed update to my last post, but it's too late to worry about it now. So get over it! lol 

So I showed up to the clinic not fully sure what to expect. They'd told me I would be talking to everyone (and their mom) as well as doing a few tests. So of course I drank a bunch of water. I didn't want to be unprepared this time. Of course, I was overprepared. I didn't need to do a pee test and sat there half the time needing to pee. However, they did get through things fairly quickly. I learned a lot talking to all of these people.

First up was the nurse coordinator. Cathy is really nice, and really busy. I've talked to her a few times on the phone but each time I came by to chat she was in the clinic or something and someone else helped me. I finally got a chance to meet her. She went over the consent forms with me page by page explaining a lot of ins and outs of the surgery. She explained how the procedure would be done. It's called a hand assisted donation or something like that. Basically there is an incision a couple of inches long and 4 probe incisions where the little cutter, camera, etc. enter. It's a good thing those are so tiny because I think tiny things are cute. And if all that junk is going in my body, it doesn't hurt to have it be cute. After the probe instruments do their thang, the doctor sticks his hand in the bigger incision and assists the kidney out of the body. Weird. The only thing I can picture when thinking about this is in Spaceballs where the alien comes out of the guy and starts dancing across the counter. Can you picture a kidney with a straw hat and a cane singing "Hello my baby, Hello my darling, Hello my ragtime gaaaaal"? Better believe I can. And call me sick, but I get a kick out of it. She also described how I'd be intubated and have a catheter, but they stick all those things in while I'm out. Terrific! I'm sure glad she gave me copies of all the papers because there was a lot to process and I just can't remember it all off the top of my head.

After that I talk to the social worker. She basically gave me a psych evaluation. She reiterated that I can change my mind at any time up until I'm out. She asked a lot of questions that really made me think too. Where will I be staying after? At first I thought, duh, my apartment. Then I realized what a pain it would be for someone to have to come stay up there with me. So I realized a better idea would be to stay at my parents' house until I can move around on my own better. They checked off on that already so that's a relief. She also asked about my feelings if the kidney failed, how I would feel if it failed because my dad didn't take care of it, etc. Pretty heavy stuff. But I think my answers were pretty typical. I definitely was honest though. It's not helping anyone if I said I wouldn't care. She was very nice and told me to feel free to contact her with anything I needed.

Then I talked to the dietician. That was a short visit because I really don't have special needs. I told her I don't like straight milk to drink and I don't like to eat fish. She said I should take calcium and make sure I get plenty of protein. Other than that, I really don't have to change anything. Woo hoo!

I was supposed to talk to the surgeon, but they ended up in a live liver donation that day. Somehow I think I can wait for them. Cathy, the nurse coordinator, said that it is perfectly fine if I end up talking to him closer to the surgery. Cathy then mentioned I have to have a kidney CT and perhaps an EKG. They're not sure if they still need me to do that or not. I guess some things have changed recently.

Last I went to a different office and talked to my donor advocate. The donor advocate is not connected to the transplant program directly. He's meant to be an advocate for me with no bias to the program. He is another level of support so I can feel comfortable going to anyone with concerns or questions. He basically asked me a lot of the same questions the social worker did. (He's a psychiatrist) Then he asked me a few things like did I know that I would need to be sure I drink more water when exercising to help my kidney out after the surgery. I hadn't been told that yet. He also asked what I would be doing during the two weeks to fill my time. I told him I'd be crocheting A LOT! Picking up that hobby has been a real blessing in many ways. It's helped me do something productive when I don't have a lot of money, bond with my favorite friends, and now will help me recover during a significant amount of downtime. He suggested I keep a variety of things handy (movies, books, crochet) so I can keep switching it up. I think it will help a lot to be around my family and to be close to Jeff too. It would be much harder if I had to be all alone I think.

So with all of those updates it gives me a lot of hope. I know nothing is "for sure" yet, but everything we talked about was as though I can donate. So it gives me a lot of encouragement that I can get the last couple of tests done and hopefully get a thumbs up from the board.

That night I talked to my dad about a lot of what the various people said. He asked me how Jeff felt and I started to worry that I hadn't asked him straight out. Luckily, when I talked to him later, he reminded me that he was 100% supportive. I'm so lucky and blessed that I have such a wonderful man in my life. Especially at this time in my life. I couldn't ask for anyone better. Genuinely.

Alright enough gooshy stuff for now. Just thought I'd drop a note with the updates since I kept forgetting before. Laters on the Menje!

Hold On

For one more day yeah...can ya hoooooold oooooon can ya hold on

Ok, sorry. Just flashing back to the good ol' Wilson Phillips days. And to clarify a questions asked to me before, yes I do like Wilson Phillips. No I don't mean Wilson Phillips when I talk about how I idolize the Wilson sisters. In that case, I'm referring to Heart. In fact the miscommunication kept going because when asked if one of the girls gained some weight I said yes. Now I realize that both groups had someone gain some weight. So there. Now it's clear for the world to see. Like=WP LOVE=Heart

Anyway, on to the reason for my post. I'm almost ready to head over to the kidney clinic. Yay! I met with the nephrologist, Dr. Lambert, yesterday and he said my nepher regions are lookin' good! (umm...that could be misconstrued huh?) He can't see any reason not to "forge ahead". (still misconstruable..oh dear) He says in some cases that it seems a donor has been pressured to donate from family and that's the point where he will make a medical reason exist so donation is impossible. He didn't sense that with me and hopefully the donor advocate won't either because it's certainly not the case. Every step along the way my dad has genuinely conveyed how I shouldn't do it if I have any doubts and that he would think no differently of me if I didn't. Duly noted. Now let's get on with it!

**Side note**I find it amazing what a small world we live in. Imagine my surprise when I read the guest post over at Honeybear Lane today and saw that her sister is going through the same thing. She's working on a paired donation for her precious little two year old angel. Just when I feel like I have it hard, I'm knocked down a peg or two. What a strong woman. You can read her post and give her some support here.

Today I'm off to see the coordinator, nutritionist, social worker, and donor advocate. And do some more labs. Which reminds me, I need to chug a cup of water. Every time I go in I seem to be asked for some pee. Yesterday I came darn close to not having any! I had only had a half a cup of coffee to drink so far that morning. I'm determined to have some today. Now if I can only hold On to it until I get there....

Step 3...and Maybe some More Steps

At this point I'm kind of confused about how many steps I'm completing, but I'm definitely onto the next round. The 25th and 26th are going to be some crazy days. I almost scheduled for next week, but the Nephrologist wasn't available then. Lucky because I already have stuff going on that I forgot about. Whew. 

So the next round involves a whole lot of talking to people and a couple of tests. I have to talk to a Nephrologist that Wed. Then, on Thursday, I talk to a social worker, a nutritionist, and a donor advocate. I'll be taking notes about what they say so I can fill everyone in. I also have to have a CAT scan and a chest X-Ray. If all goes well with those things, I'll be talking to a surgeon and getting a kidney CT for the next step. 

So far so good. Thanks to everyone who has been keeping their fingers crossed. It's working!! 

This weekend at my parents' house I was yet again reminded of why I'm doing this. It seems like I rarely see my dad when I'm down there because he's always at dialysis. Then he comes home and has to get lots of rest for work. He told me about a guy there who had been doing well before, but looked to be on death's door that day. While my dad looked that way when he first started, and looks better now, I also know that the human body was not designed to be on dialysis forever. It really takes its toll. Exhaustion, cramps, nausea..the list of unpleasantry goes on and on. I'm hoping that we can get him a kidney, that it will "take", and that he won't have to look like that again.

I know that even if mine matches, there will be no guarantee that it will work well for him, but I have faith. My faith is that even if it doesn't work out the way I'd like, I will learn from the experience and that whatever happens is what is supposed to happen. I'm not extremely religious, but I do believe in God and that there is something to learn from everything life throws at you. There is a lot of sadness and pain in the world, but we are all empowered to add happiness and light.  

Step 2.2

Quick update! I went to the lab today to start round two of testing. The blood they took today (2 purple tubes) will be sent out for a histocompatibility test. The compatibility test basically compares the little ins and outs of my blood to my dad's so we can make sure nothing in his will reject mine. (Fine, if you want to know more of the technical such and such go here aaaaaand here)

Next up I have to complete the 24 hour pee test so all those who work with me will have to excuse me if I hold it until I can make it home. lol There are just certain things I don't want to handle outside of my own place if at all possible. That test will check my creatinine clearance. *Note* Take my advise from my last post and DO NOT mix up creatinine and creatine. Since I got confused, here's a little info for you on why this test is important:

"As the kidneys become impaired for any reason, the creatinine level in the blood will rise due to poor clearance by the kidneys. Abnormally high levels of creatinine thus warn of possible malfunction or failure of the kidneys. It is for this reason that standard blood tests routinely check the amount of creatinine in the blood. A more precise measure of the kidney function can be estimated by calculating how much creatinine is cleared from the body by the kidneys and it is referred to creatinine clearance." (source: here)

When I take that test back to the lab they'll also draw some more blood for a serum creatinine test. Using both tests, they'll be able to make sure I'm filtering out creatinine properly which will indicate that my kidneys are working right.

I like that they gave me a copy of the orders today so I could look up these tests and know what we're checking. I also find it interesting to be going through some of the same testing my dad has done. I know he's gone through a helluva lot more, but it kind of makes me feel like I can relate in a small way to some of what he's going through. Plus I'm actively doing something to help. Not everyone gets that opportunity when a loved one has an illness.

More updates to come...

Step Two!

It's been an interesting day for my mom, I can testify to that. I just about gave her a heart attack today! I was told last Wednesday would be a good day to call the kidney transplant coordinator about the results of my first round of blood work. I had to leave a message with the secretary and *surprise* I never heard back. That makes two times I've left messages so far (one with a person, one voicemail) and zero responses. So I called again today and was actually able to get a hold of her. She grabbed my chart and kept telling me that everything looked good so far. Then she described the next steps and when I can come in to take care of them...more on that in a minute.

On to the heart attack. My mom is a medical technologist (although they call them something different these days) who works in the lab of a hospital. She has since I was a young girl so she's got a whole lot of knowledge about lab results. As usual, I texted her and my dad to let them know what the test results said and then went about my work day. On my way back from lunch I noticed she'd called so I called her back. She was panicked! Our conversation went something like this:

Mom-Did she really say your creatinine is 98.2?!!!
Me-Yep
Mom-Did she tell you what that MEANS?!!!!!!!!
Me-Uh...yeah....(confusion beginning to set in)
Mom-You need to be at the hospital..RIGHT NOW!!
Me-Wha?? Noooo...
Mom-YES!
Me-Wait, she said it needed to be above 80
Mom-(a beat of silence) Ooooohhhh...Do you mean creatine?
Me-oops

Apparently there's creatine and creatinine and I mixed them up. Anything over a 4 with creatinine is bad news bears. So my mom was thinking that even if I had heard a decimal place wrong, I was still in some deep crap. But no, it was just me confusing the two. In my defense, they are very similar sounding so it's not that much of a stretch right?

So now we're onto step 2! I'm meeting with the transplant coordinator tomorrow to go over some consent paperwork and to get the next round going. Apparently it is going to involve some more blood work and a 24 hour urine. Which I'm not exactly looking forward to. Don't worry I won't discuss too much bodily fluid stuff, but it's all a part of the experience so it's getting mentioned.

I'll try to write a follow up tomorrow once I've talked to the coordinator. (Hey, I'm a coordinator too!) Thanks for all your finger crossings, keep it up!

Step By Step...Oooo Baby

*I know I owe a post about the NY/Michigan trip, Jeff's party, and all of the craftiness I've been up to. I have that post started but Iphoto is confusing me so I haven't been able to upload the pictures yet. I should have it done soon!*

Step 1...

I think most people who read this know, but here's some background anyway. My dad was diagnosed last year with multiple myeloma and amyloids that have wreaked some havoc on his kidneys.

(For more info about the process he's been going through, you can read his journal at this website. It hasn't been updated for a few months, but you'll get the idea.http://www.caringbridge.org/visit/dennisminch)

He's been doing dialysis 3 times a week for 4 hours at a time pretty much since he was diagnosed. The lack of working kidneys puts him through a lot of discomfort and sickness. He was just recently accepted into the kidney transplant program and we've been told that a new kidney would help him a ton! That brings us up to date.

I am the only one in the family with blood that he could accept (O neg) so I'm really the only one who could consider donating a kidney to him. When we first found out he was accepted into the program, he said that he would only accept a cadaver kidney. With some more talking to the doctors about the donation process, he's opened up to the possibility of a live kidney donation. SO...Last week I started the process of seeing if mine will match. AND...I'm going to blog about it!

Total there are six steps to the matching process. Step one was four tubes of blood and a cup of pee. My mom would know better what they're testing for, but I can say they took a green tube, a red tube, a pink tube, and a purple tube. Such pretty colors! The results should be done soon so keep your fingers crossed that everything is good to go so far.

Of course both my dad and Jeff teased me because I pointed out that I got 4 tubes of blood taken and a teeny bruise. I'm know I don't have room to talk about getting poked, but it's something different so I'm probably going to talk about it anyway. lol

Even though my family can't donate their kidney to my dad, there is still the possibility of a paired donation. How that works is that someone in my family would go through the matching process. Then we'd be connected with another person who needs a kidney that matches theirs. That person would know someone willing to donate their kidney to my dad and we would help each other out. So there are lots of options these days and I'm hoping one of them will come through extra quick.