Get the Show on the Road

Now comes the hardest part of the whole ordeal for me........ waiting.

I'm done with the bloodwork (for the most part). I'm done with the urine collecting. I'm done with the xrays and the IV's and the radiologist and the therapist. I'm done with the social worker and the EKG. I'm done with the phone calls and the coordinating my schedule and the trips to the hospital. Now all I have to do is wait.

For those of you who don't know me very well, I'll fill you in. I'm not a very patient person. I tend to jump into things head first as quickly as possible. Dad used to have a saying - think first, then act. As often as he would tell me that, somehow I have always ALWAYS done everything in my entire life the opposite. I tend to act first and then think about it (after its too late). While I don't claim this as a very good method, I seem to have survived okay this far in life. I have gotten myself into a few messes.....I once sat our row of hedges on fire as a kid because, without thinking first, I was lighting and throwing fireworks into them. My friend and I once decided on our lunch break to go and get our hands pierced in the little fleshy part between our thumb and forefinger (not very convienant for a banker). I have had the cops call my parents in the middle of the night because I was using their vehicle, and without thinking, I parked it in a towzone while I went and partied. I once moved to Kansas City on a whim, without the financial ability to actually succeed up there, and had to move back only three months later. You get the point. I'm not proud of these things, but I'm drawing a picture here....

So yesterday as I was leaving the psychologist office, I was thinking to myself about how we could just have the surgery tomorrow if we wanted. I mean, all the tests are done. Nathanial is healthy now. WHY ARE WE WAITING?!?!?!? Lets get this show on the road already!

I get that its a process. I get that the doctors want to thoroughly go over my medical records before making the final decision. I get that Nathanial should attend one more of his 'advanced kidney recipient' classes. I get it! But at the same time....every day this is put off is another day things have a chance to go wrong. I don't want to be a debbie downer, but one can't help but think of Nathanials health. If he gets a cold, he'll be put in the hospital and it could delay things for weeks! If he gets an infection, same thing. What if I get H1N1 in the meantime!?

Here is the procession of what is left before surgery:
*my medical records have to arrive in the renal department and Dr Shields has to go over them
*Nathanial has to attend one more 'Advanced Renal Transplant' class (scheduled for October 20th)
*Mark, the coordinator, has to schedule a time that the surgeons can meet with Nathanial and I to decide on the actual date of transplant (I was told this meeting probably wouldn't take place until the last week of October-boo!)

Thats it! See how close we are now! OH man! Everybody please pray for Nathanials health between now and then pleeeeeaaaaaaase! In the meantime, I'm going to keep taking my vitamins and exercising everyday. I'm going to use the hand sanitizer and wash my hands everytime I shake someone's hand at work. I'm going to get plenty of rest and I'm going to eat my veggies. Hope that does the trick!

MORE Gathering....

This is Nathanial while on dialysis. Every Monday, Wednesday, and Friday he has to go to the hospital and do this for 3 or 4 hours. I can't tell much about the experience, but I had these pictures to share. Those tubes coming down his chest are the lines they hook the machine up to that dialysizes him. Blood is going out one side and going back in the other side. Apparently, having your blood taken out makes you extremely cold. He always has to have blankets with him and he has to dress warm. I believe he even takes warm fuzzy hats and mittens sometimes too, but I'll leave it up to him to describe the dialysis experience with you. I'm going to write a little about my day now.

This morning I woke up to my dog heaving. He was getting ready to vomit on my bed so I grabbed him and sat him on the floor to finish doing what he had started. Sick. Well, lovely to wake up to that on a Sunday morning! I asked the pups if they needed to potty and they jumped around all excited to run out into the cold for a few minutes. They're weird like that. Usually, my routine is to get up, turn off the house alarm, let the puppies out, and then I come in and go potty myself. Today I am doing more of the pee collecting for Dr. Shields. So after letting the puppies out, I had to get my tray and my jug before proceding. This threw my whole routine off!

I believe this is my last round of the pee collecting. Of course, if the doctor wants me to do it again, I will do it again. Whatever it takes. I hear this doctor of ours isn't one to mess with. If he says do it, we better do it. Period.

Today I have a lot going on, so today may be more difficult with the jug hauling. (I feel like inserting a bad joke here about how I'm used to carrying around big jugs) First we have church, then we are headed on a little road trip to Emporia to see my mom. Her birthday was Friday. I will need to call mom on the way and ask her to clear a spot in the fridge for my pee jugs. I'm sure she won't mind. Hopefully by next month right now, she is clearing room in the fridge to save jugs of Nathanials pee!

You have died of Dysentary

I'm not going to die of dysentary. I'm much more likely to die of dehydration or hunger. I promised in my last blog that I would write next about the Renal diet. I suppose you could call it a 'diet', I do lose weight. Mostly because I can't eat anything that tastes good.



All people on dialysis have to be on a Renal diet plan, though the extremes of the diet vary greatly from person to person. Basically, if you can't pee, your body fills up with toxins normally urinated out of your body. Dialysis attempts to remove both the toxins and the excess water, but it cannot do it all. So, you are to avoid certain foods that are high in these toxins.



There are LOTS of different toxins out there in LOTS of different food items. Shoot, even things that are good to eat for normal people end up being bad for dialysis people. The biggest toxin, and the one I struggle with the most, is Phosphorus. Phosphorus is found in ALL food. There is no way to avoid it, so I have to take special pills called 'phosphate binders' with every meal or snack.



As I'm eating, I take a chewable phosphate binder that removes the phosphate from the food I ate and turns it immediately into poop. That's right, poop. My body will then discharge the phosphates the next time I go to the bathroom. Which is usually some time in the next five minutes. That is why I can't go out to eat any more. My pills send me to the bathroom usually before I'm even done eating the meal.



There are lots of high phosphate foods. These are the foods I'm not supposed to eat very much of. This hurts, because I LOVE these foods. Here's a short list: Nuts, Beans, Okra, Chocolate, Pancakes, Biscuits, Waffles, etc... Then the big one...dairy products. That's right, all forms of dairy are high in phosphorus. Milk, Cheese, Ice Cream, etc... I LOVE drinking milk. I used to drink it every day. I LOVE ice cream. I used to eat it all the time. Don't even get me started on cheese. Cheese goes with EVERYTHING. Cheese goes ON everything. Cheese goes IN everything. Cheese makes up a major portion of my diet!



There is another toxin I struggle with: Potassium. This is something that's good for normies (what I call normal people). When I was younger, I used to seek out high potassium food and drink because it helped me avoid leg cramps. I used to get HORRIBLE leg cramps, so bananas and milk (that's right, it's high in phosphorus AND potassium), All Sport and other potassium high stuff was a constant in my life. Now, I'm supposed to avoid them.



This makes it MORE difficult to find appropriate food and drink. I LOVE fruit juices, but all forms of citrus are high in potassium. Orange, Grapefruit, Cranberry, etc... And it gets worse. That's right, even worse than having to avoid cheese. There are two food items that are super high in potassium that I love to eat and are in most every dish I eat: Potatoes and Tomatoes. Both these items show up as ingredients in almost every meal I've ever eaten. These are constant staples in my diet. They're cheap, diverse, and we even grow them in our backyard garden!



There is one particular thing I'm supposed to eat LOTS of...protein. Protein helps your body heal, so anyone who is sick or in the hospital is supposed to eat lots of protein to keep their albumin levels high. But, there's a problem. All proteins (that is meat, fish, eggs) are also high in phosphorus. It's a catch 22. Darned if you do, darned if you don't.



So, that's how the Renal diet works. It's incredibly annoying and stops you from eating most stuff that tastes good. I've never gotten a good report on my toxin levels because if one gets low (phosphorus) then the albumin is low too.



Good. Bad. It doesn't matter. I know that the build up of these toxins will end up killing me, but sometimes I just want to eat some cheesey mashed potatoes! :)



Grace and Peace,

-Nat

The Gathering

Well today I did the gathering. I tucked my little pee-gathering tray and my nice, big jug into a cutsie shoulder bag and off to work I went. I made sure to tuck plenty of extra Dillons sacks in my bag so I could wrap my articles discretely during my time in the bank. Right after entering the bank, my boss asked what all I brought to work. I saw his eyes light up.....I think he thought I came bearing food!

The collecting part of the day was easy. It was the part where I was supposed to drink extra water all day that was difficult. I naturally don't drink much. I have a couple of cups of coffee in the morning and I'm good until late afternoon. I don't usually even drink with meals. I am just not thirsty. As a kid, my mom would FORCE me to drink water. I remember spending a lot of time at the dinner table with a glass of water. Mom would tell me I had to set there until the glass was finished. Agony!

I went to the grocery store on my way to work today to buy some special flavored water.....hoping it would entice me to drink it. But there my grape flavored Aquafina sat, all day long, right next to my mouse, not being drank. I think I finished the first bottle around...oh.... sixish. Then I grabbed a bottle for the ride home. Only, instead I talked on the phone for the duration of my trip home. As I walked in the door I tried making myself guzzle the water so when Geoff (my husband) asked me how much I drank, I could smile and tell him at least two whole bottles. I knew that would impress him. I did manage to drink a cup of boullion tonight. And a cup of juice. Go me!

Tomorrow is the IVP. Gag. My knees get weak thinking about it. I was told after they hook up the IV, they put iodine into me and it gets really warm. I will feel light headed, like I might pass out while they run it through my veins and map the course of veinery (I just made that word up) that run through my kidneys. Right now, just typing this, I am shaking. I have to quit talking about it. Thank goodness Geoff took the morning off so he can go with me. Maybe he'll coax the inner tough-girl out in me. All I can say, is I am SO ready to have tomorrow over with!!

After all the tests tomorrow, I go see Mark and he gives me the final results. I don't know if my stomach is more tense about that or the IV. A lot of weight rests on the results of tomorrow. Hopefully tomorrow right now I can be blogging about the dates we are looking at for the transplant. No wait, hopefully, tomorrow right now I am already in bed for the night. But, earlier in the evening I hope to be blogging about dates. So until then...........to be ah-tinued. To be ah-tinued? Yes, to be ah-tinued. (inside joke)

My Jugs

So........its about nine o'clock and I'm getting ready for bed soon. I have this dilema, because I don't know exactly how I'm going to hide these pee jugs at work tomorrow. As gross as this is, I have to save every last drop of pee for 24 hours starting tomorrow morning as soon as I wake up. I'm doing whats called a "creatinine test". You see, a few years ago, my little brother had several really bad things go wrong with this body which resulted in him having total kidney failure. He's been on dialysis for three years. Actually, this month is the anniversary of the hospitalization which caused his kidneys to take a permanent vacation.

Wow...three years. Three years of going to the hospital three times a week and being hooked to machines that take all of his blood out, clean it, and then return it to its rightful place.....back inside of him. Three years of multiple surgeries to remove and replace the 'plugs' that connect his veins and arteries to these machines. Three years of never getting to travel further than a days car ride from the hospital. Three years of what I can only imagine is pure misery. Of course, I don't pretend to understand what he's going through. I'm sure the things he's endured the past three years are beyond my realm of comprehension. That is why I am starting this blog.

I have completed some preliminary testing and have been determined a suitable donor for Nathanial (my brother). There are more tests to complete before we can actually schedule the transplant, but I am going to start sharing the experience through this blog starting now. I am going to post blogs, and I am going to ask him to post blogs. Together, we will document our journey throughout the kidney transplant process. I will post my perspective of things, and he will post his. And maybe, in a few years, we can go back and read this and have one of those "oh remember when" moments. Maybe other people in our same situation can read our blog and it will relieve some of their angst. Or maybe it will result in nothing more than therapy.

But back to my jugs. Because this creatinine test involves 24 hours of pee, and because I was gone most of the weekend, I have to start tomorrow morning. Which means hauling my not-so-discreet jugs to work. I think I can fit them in a bag to get them into and out of the bank. But I'm not so sure my co-workers want my bottles of urine sitting in the fridge of our break room. I will have to wrap them in some sort of larger bag....maybe a paper grocery sack that is stapled shut...before putting them in the fridge. Dilemma number two: do I tell my coworkers what is in the jugs? Or do I just let them think the fridge is a 'pee-free' zone. I mean, I don't want to gross them out, but I don't want to not tell them and have them find out either. I guess I will just cross that bridge when I get to it.

After the 24 hour pee collection process, I have a series of tests scheduled at St Francis with the lab. The renal donor coordinator (whom I love, by the way) is named Mark Blackmore. Mark has really been awesome . He says his sole job right now is making sure I'm safe. He makes sure I get all the rights tests so that if I am the donor, nothing goes wrong with me afterwards. I, for one, think that sounds like a really good idea! However, one of the tests he has scheduled for Tuesday seem like something out of one of my nightmares. There are the easy ones....the chest XRay and the bloodwork. There is the EKG and the AIDS test. There is the hepatitis test and the physical exam. But the one that gets to me is the IVP--the Xray of the kidneys, ureters and pelvis. Apparently, they are going to hook me to an IV for this test. There are only two things I am terrified of in this whole entire world. Those are: being abducted by an alien and IV's.

I am not just a little scared of Tuesdays tests, I am MORTIFIED. I will most likely pass out at least twice before they get the IV all connected right. I get nervous and I start shaking, making it very difficult for the nurse to insert the needle. Then, apparently, even my veins are nervous, because they always start rolling making it even more difficult for the nurses. Once, when I was in full blown labor, it took three nurses to hold me down to get the IV in my arm.....and then (mind you, I was in full blown labor) I fainted. I am tough in a lot of situations, but tell me you are going to shove a needle into one of my veins and I am a weinie. So, as you can conclude, I am a little less than excited for Tuesday to get here.

I will record more of my experience tomorrow. For now, I would like to leave one final thought for my first Organ Trail blog. A lot of people have remarked lately that I must be very brave. They have made comments like, "oh, you're such an angel to do this for your brother", or "what a great thing you are willing to sacrifice for Nathanial". While these comments are meant with the best intentions, it usually leaves me feeling a little weirded out. I compare it to walking past someone who is drowning. Even strangers jump into a lake to save someone who is drowning. Certainly, if it was your own sibling, one would jump in to save them! I am by no means a hero. I am by no means a brave soul. I am a sister who loves my brother and hates his suffering. I am human. And I am scared.