National Kidney Week!

Happy National Kidney Week! Show your support by wearing red. Technically, the site suggests red undies but I won't turn down any red support. :) I started PD training this week. I've learned quickly which is good in one way. It means my trainer is very nicely giving me Thursday arvo off for my interview and no Friday hospital visit for me either. :) but, it means that she has little to tell me in between bag exchanges. So I'm very bored. And my iPhone has limited charge. Nonetheless, a blog post for kidney week is for sure in order. Since I've been spending so much free time waiting around the hospital, I've been observing people. Today, a couple came in to the PD unit. I think the hubby gets PD and the wife is there as support. That was so nice to see. If you're a Hemo patient, you see other Hemo patients in the hospital. I think there's a kind of community. But for PD, we do it at home and rarely do I see anyone else on PD. It was good to see that couple for that reason. Also to see support. It's a luxury. Mick loves me infinitely and will do anything he can to have me be healthy. He hates hospitals though and gets grossed out by the not so lovely parts of PD. Plus he has to go to work to support our family and can't take time off to watch me do dialysis. Why would he anyway? Then there would be two people bored out of their minds. ;) Still, I think it's cool to see an older couple supporting each other thru this. I have to praise Australia's medical system. I know some people strongly oppose universal healthcare for the US but I'm fully in favor of it, especially after seeing it firsthand. It makes the hospital what it should be- a place for healing and helping. It removes the business of it. No one profits from others being sick. Literally or figuratively. I can't help but get behind that principle. There's no debating about whether to get treatment bc people can't afford it. No cutting corners to avoid costs. I feel like the care I get here is extraordinary and it makes me very sad to think it wouldn't be so great if I'd been diagnosed in the US. Anyway, I digress. I don't want to get all political or whatever. I'll just say that I'm eternally grateful to the doctors, nurses, and staff here who treat me to the best of their ability even though I'm poor and a foreigner. So. Your kidneys. How are they doing? Do you know? Would you know if there was anything wrong? Probably no, to those last two questions. Do you have high blood pressure? Are you overweight? Do you have diabetes? Lupus? Have you felt tired? Nauseous in the morning? Itchy? Noticed swelling in your ankles or fingers or around your eyes? Symptoms of kidney disease are so general and can be explained away by other less threatening problems. If you've not had a blood profile done lately and you have risk factors I mentioned above, please please PLEASE ask your doctor to do a general blood profile that will test for kidney function. You can live a normal life with as little as 20% kidney function do don't be afraid. And that's a life free of dialysis or the threat of transplant if you can catch it early enough and preserve your function. It might mean you use less salt or stop drinking soda. Or maybe it's being caused by a medication or underlying disease you didn't know you had. Getting your kidneys tested can save your life, prolong your life, give you peace of mind. I wish I'd been tested a year ago. If I had, I might not be at the hospital right now. I might not have half of our bedroom filled with boxes, bags of solution, hospital supplies, and an IV pole. I might be able to pick up Em or Ed and give them a hug, not worry about lifting laundry baskets or carrying groceries, have a shower without having to spend 30 minutes afterward changing a surgical dressing. I'm not sad about where I am right now because I'm grateful for my life, my husband, my kiddos, my friends and family. I just want to be able to help someone else avoid the financial strain, the mental stress, and the physical limitations of end stage kidney disease. I want to save your kidneys. :) If you're reading this, I hope you want to save your kidneys too. If you haven't had your kidney function tested in the past year and you're at risk or don't feel right, don't wait. Do it TODAY. This week. And wear your red undies to the doctor's appointment for me, will you? :)

What kidney disease really MEANS for me

First, a brief lesson in anatomy and physiology. Like, a super simplified lesson. Your kidneys have a few major functions. Horace and Steve are in charge of controlling the amount of fluid in my body, regulating my blood pressure, filtering out waste products like urea and creatinine, and maintaining a balance between calcium and phosphorous. What does all that really mean? Let's break it down.

Controlling the amount of fluid in me- When Horace and Steve get tired and lazy and don't feel like working much anymore, they stop worrying about the fluid balance in my body. I start retaining fluid. Mostly it appears on ankles, hands, and around the eyes. Edema. I should theoretically be experiencing this, but really I don't have major problems with edema. I should be peeing less and less frequently and having less fluid come out, but that's only moderately been effected so I'm still good on this. Way to go boys!

However, because fluid balance is key, many people have to be fluid restricted on dialysis, particularly hemodialysis. You should only take in a bit more than you put out. So if this starts to decline, I might have to limit what I drink. Right now, I can drink when I want, when I am thirsty. I still try to keep a close eye on it and keep track of how many glasses of water or tea I drink. And it's not just those things. Fluids are in jello, in juices, in juicy fruits, in things like ice cream. So I have to be aware of all that as well. I count my milk in my cereal and know how much I put in. It goes toward my fluid total. Overall, I try to consume about 2 L of fluid a day, maybe less.

Regulating blood pressure- This is kind of a chicken/egg question. Blood pressure and kidney disease are so tied together that it's hard to know what caused what. I've had high blood pressure that's been treated for years. And when it starts to be uncontrolled, I change meds per my doc. Kidney failure throws a bit of a wrench in that. Because many medications, including bp meds, are processed and metabolized by the kidneys, I have to be careful about which medications I take and the amounts have to be adjusted for my poor Horace and Steve so they don't get overloaded. Controlling bp when you have kidney disease is super important because high bp can damage the kidneys further. However, kidney damage makes it harder to control bp. So it's another tightrope to walk. When I start dialysis, part of knowing how to adjust to the right amounts of dialysate is knowing bp and if it gets out of whack, it's a sign to adjust some things.

For those of you who know a bit about blood pressure, low salt diets are recommended. Now often, salt substitutes are made of potassium and some people use these instead of sodium for a salty hit. Kidney failure leads to high potassium levels, so no salt substitutes. This also means that to keep my bp low and in check, I need to have a low salt/sodium diet, a low fat diet, and exercise regularly. But no weight lifting because that could jack with the catheter. :) So I have to be wary of processed foods, stay away from salty meats like bacon, sausage, deli meats. When I buy veggies or margarine or virtually anything now, I get low salt or no salt added. I read a lot of packages now. Look at a bottle of ketchup. That's a big offender. Or soup! Also a no-no. And of course potato chips and fries and fast food/take away is terrible.

Now back to potassium. Potassium regulates your heart rhythms. You want that working. At least, I sure do! When I first went into the hospital, my potassium was too high. It's fluctuated since then. I take a chalky substance that I mix with water twice a week now to keep my potassium at bay. And the list of foods that are high in potassium is long. Here are a few of the highlights- bananas, avocados, spinach, chocolate, nuts, peanut butter, baked potatoes, tomatoes, pumpkin, raisins, oranges, milk, fruit juice, potato chips, and (ironically, I think) kidney beans. These are all off the list of food choices. You can see some of those are staples that are hard to avoid and many are healthy in other ways. That's the first bit of trickiness.

Filtering out waste like urea and creatinine- These are the two big lab test markers that help determine amount of kidney function and damage. Both are high for me in my blood, indicating they aren't getting out in my urine. Now these have been coming down in the past few lab tests, and I hope they continue that trend. They say kidney function, once it's reached less than 10%, cannot be regained. But if I haven't followed the rules so far, why start now? I reckon with a little TLC, some healthy visualization, strict diet and exercise monitoring, my Horace and Steve can get a bit stronger. Now, I am not in denial. I don't believe I'll be able to will them or diet them back to 10 or 15%, but I do think we can aim for maintaining 7% or maybe even climbing to 8%. Trust me when I say some kidney function is better than none at all. :) Dialysis is important for this function because without it, there's really no way to get rid of more creatinine and urea. It makes your blood dirty. :) That's how I think of it anyway. Dialysis is like a washing machine for my dirty blood and it will come back all shiny and new and ready to rock and roll.

Maintaining a balance between calcium and phosphorous- These two bind to one another. Your kidneys make sure that the right amount of calcium and phosphorous are present to maintain strong bones. With two much phosphorous, the calcium can't get into your bones and they become brittle or you can have calcium deposits forming. Most patients in kidney failure have high phosphorous and I am no exception to this. However, these past labs had my phosphorous just out of the normal range so I'm stoked about that. As you can imagine, I am told to watch my phosphorous intake. So what's high in phosphorous? Red meat, canned foods, dairy products, chocolate, nuts, whole grains.

Basically, my diet is a shambles. lol I can't eat salty foods or high potassium or high phosphorous foods. Sometimes these oppose one another. For example, many canned veggies are recommended for their low potassium content. But, they might have a higher phosphorous or sodium content because they have preservatives. And I need protein to maintain good hemoglobin in my blood and a higher RBC count. But that has more fat and phosphorous usually. You would reckon fresh fruit would be good, but sometimes it's the canned variety that has less potassium. So as I've said before, it's a precarious balance. Carbs are fine but as I need to lose more kilos to get on the cadaver transplant waiting list, I need to watch how many I have. It's very hard to maintain the balance and it's a completely new way of eating. Before I had all the information I do, I thought I was eating healthfully and for a normal person I probably was. But eating potatoes and tomatoes is not good for me. I have to boil potatoes twice, changing the water, to bring the potassium down. And of course I never add salt to anything. I also have to be careful with sauces and dressings. Some fresh fruits and veggies mixed with some canned fruits and veggies.

I love to bake. Love making cookies, cakes, desserts, tarts, biscuits. Emily told me I should open a bakery and I've thought about how much fun that would be (and how much work!). I am going to have to learn to bake new things. Lots of lemon and lime flavorings, more fruit salads. I will still bake homemade cakes for birthdays and I won't beat myself up about having a piece. But I do have to be so careful. Alcohol only on occasion (which is okay because I was never a heavy drinker). How sad to give up chocolate though. And bananas! And coconut.

I gave up soda months ago so that's not such a hard stretch and I can still drink tea once or twice a day. I'll have to watch my sugar intake too. I'm not diabetic, but the dialysate contains glucose and that has to be counted in to my diet and caloric intake as well.

There are other factors of course. I've been cautioned very strongly against lifting heavy things. That includes picking up the kiddos, so no more giant lifting hugs. :( I have to very careful about moving laundry around and even vacuuming until I'm healed up. Carrying in groceries, moving furniture, and so many more things are impacted.

I can't take baths anymore. There's too high a chance of infection in the catheter if I do. So showers only. And when I shower, I currently have to tape cling wrap over my incisions and catheter to keep it from getting wet. That's trickier than you might think. :) I can't swim in a pool. I have limited time to swim in the ocean. I can't wear a belt over my catheter so I have to be cautious about where my pants sit and how tight they are. When I start dialysis, there will be a longer tube attached. Sheng recommended I get a leather pouch the supply company sells to tuck my catheter into it.

Our bedroom will become half bedroom, half dialysis room. No pets allowed in there. I'll have to get a table to set the bags and dressings and cleansing items on. We're moving a recliner in there. I have to dialyse four times a day for 30-45 minutes for the first six weeks. That means I go through a box a day of dialysis bags. I'll constantly have a stack of boxes in our bedroom containing supplies and will have to be home when deliveries are made so they can wheel them into our bedroom. I have to find a job that will either allow me to dialyse there or give me enough time to come home and dialyse, then return to work.

I have to eat a good meal three times a day. No skipping meals. I have to exercise, but low impact currently until I'm healed. And walking still hurts. If I travel, I can travel within Australia if I set it up well in advance so the supply company can send dialysis supplies there. It's a possibility that I might be able to travel to the US at some point but it will be tricky timing and might require paying out of pocket for dialysis in LA or while I'm in Memphis or Springfield. Once I start dialysis, there's no dialysis vacation. :) Every day, every time.

With all that being said, I'll finish up on a positive note. I get to do the dialysis in my home, where I can be comfortable and in my PJs if I want. :) I get to spend days talking to people I love and care about whether here or in the US. I get to see my husband every night and every morning and he is on board with taking care of me and changing our lifestyle as needed so I stay as healthy as possible. I've had strangers and friends alike who have said they want to test to see if they match with me for kidney donation. I get to feel the Aussie sun burning me. lol I get to hug my kiddos, hear them laugh, make them dinner and breakfast and lunches. I get to live in a lovely house where flocks of rosellas and finches fight over the bird feeder. My puppy loves me and cuddles with me. My mind is still active and ready to find a job that will let me feel fulfilled and useful again. Horace and Steve are still giving it their all and haven't given in the fight either. I have a plethora of loved ones who are praying for me or thinking kind thoughts about me. I am in a country with phenomenal healthcare and willingness to treat me and a desire to heal me. I may have to be vigilant about what I eat, but I have choices and the capacity to get the food my body needs. I'm still a fighter and a survivor.

When  you get down to it, I'm still just Kelly. Still a wife, still a stepmom, still a daughter and sister and friend. Still love birds, still fascinated by psychology, still interested in pharmacy. I just have a new challenge to face in my life. Nothing insurmountable, nothing outside of God's plan. Just seeking out a new and healthier way to live. I'll gladly take on the challenges and struggles because it means I'm still alive and planning to thrive. :) Not just survive but thrive.

Surgical Procedures

I'm almost current with the adventures of Horace and Steve. Yay! I will say that I'm proud of my kidneys, still kicking on in spite of everything. Mick and I have joked that they are going to get better because they've been threatened with biopsy needles and now catheter tubes. It's a warning, boys. Get your act together or I'll have to turn to alternative means! :)

As I mentioned before, I'm getting to be a pro at having my blood taken. I have a special respect for phlebotomists. I think it takes talent and skill to be able to take someone's blood without hurting them. As a person whose veins sometimes cooperate and sometimes rebel, I appreciate them even more. I know I jokingly refer to them as the vampires but really, the nurses and pathology specialists I've had the fortune to have caring for me have been stellar. Here in AUS, they have posters up saying "Stop the Abuse" and showing patients berating and harassing nurses and staff in the hospitals. They make me sad. It's nurses' week this week, and I can't sing their praises enough. There are a lot of tough jobs out there, jobs that don't get the recognition they deserve. The nurses I know personally as friends and family, and the team on 8B at Canberra Hospital are beautiful, kind people who want to help and make things as pleasant as possible. Anyway, mad props to the nurses and phlebotomists and pathology staff that I'm getting to know better.

Sil ordered more blood tests a couple of weeks ago and I went in like a dutiful patient. :) The next day, my dialysis counselor and nurse, Zevi, called me. He's a lovely man who has helped me greatly. He calls and checks on me at least once a week and lets me know what my labs are like. He's very kind. So Zevi was concerned about my labs and told me to come in Monday rather than Wednesday. I spoke with Claire and she generously offered to take the kiddos Sunday night so they could get to their first day of school without the drama of the hospital as well.

Monday morning Mick went with me to the hospital. I'd been told to have in mind the type of dialysis I wanted to do. I'd read all the material, researched on the internet, and had gotten advice from a lovely woman at my old church who had a kidney transplant. I'd decided on peritoneal dialysis.

Peritoneal dialysis (PD) is one of two types of dialysis. Hemodialysis involves creating a fistula (fusing your artery and vein together in one arm for an access site) and then inserting needles each time. Usually it's done every other day and lasts for around four hours. You blood is pumped outside to an artificial kidney machine where it's filtered about four times and then goes back inside you. They take excess fluid off at this time as well. My understanding is it can be done in a center or at home but tends to be more draining and leaves you very tired afterwards. Peritoneal dialysis involves implanting surgically a catheter tube in behind your bladder, connecting to your peritoneal cavity. The peritoneal cavity has a lot of blood vessels and encircles many of the organs in your midsection. So the catheter has holes in it and you put in dialysate and let it fill up your peritoneal cavity. It sits there for 4-6 hours and then you hook up to it, drain out the filtered liquid, and then fill it up again. Supposedly you feel less tired because you are constantly dialyzing and you do it every day so it's less draining. Ha- though you are actually draining. Anyway. I'll have to dialyze four times a day every day for the first six weeks. Then, after that, they will test me to see how often I have to do it and I may be able to dialyze overnight using an automated machine.

There are advantages and disadvantages to both types of dialysis. For me, PD seemed to allow me more freedom and involved no needles. Won me over. :) There are things I have to be careful about, like lifting and making sure the catheter tube doesn't get damaged. And a major worry is infection. So it's not impossible that I would have to do hemodialysis at some point if the PD catheter gets damaged or keeps getting infected.

I went in to Canberra Hospital as directed that Monday and met with registrars and surgeons. They pushed me through so I could get set up for catheter surgery the next day. This whole experience has been funny. It's these periods of frantic action mixed with days of waiting. They are very concerned with my labs (though baffled by my lack of symptoms) and want to make sure I'm prepared for the start of dialysis. And maybe dialysis will be like a little kick start for Horace and Steve. Give them a break and relieve some of the stress on them. Like a mini vacation for the boys. :) Maybe that's how I'll think of it. Sending Horace and Steve for a vaca in the Bahamas while Catheter takes over for them. It's actually cool to think that our bodies are so amazing that when Horace and Steve start to slack off, we can re-route things to another part of the body and let it fill in. So my catheter is a substitute teacher. ;)

My surgeon was very nice and discussed the process with me. He drew me a picture of where the incisions would go and everything. I did have to fill out one form of paperwork but that was it. Then he walked me to the pre-surgery admission clinic and they worked me in. I had blood work done that morning, was weighed, had an ECG, and had my temp and bp recorded. Then I met with an anesthesiologist.  She was very thorough and I had to go through all my medical history with her. She explained the procedure and, like every other doctor, was fascinated that it had come on so suddenly and yet I didn't have major symptoms. She had me wait for a while in case the surgeons wanted to speak to me, but they never did so after another hour of waiting they sent me on my way with a scheduled surgery for Tuesday morning at 9am.

Tuesday morning. I'm nervous and just want it over with. I'm again fasting for this procedure. I asked Mick to drop me off because I figured it would be a day of waiting and he could distract himself at work. Good thing I did! I sat in the waiting room for about an hour before they called me back. I went through the glass doors into another waiting room. It was packed. I sat there for maybe 30 minutes before they called me. They had me change into a lovely hospital gown, hair net, foot protectors, tie on undies, and a robe. Back out into the waiting room. Another hour went by and they called me back again. They went through my paperwork and gave me a box that had my catheter in it to carry around. They also stuck a label on my glasses. So at this point, everything that I have is locked up safely in a locker. So no contact with the outside world. The Breakfast Club came on at 1pm and I thought, "Something to amuse me. It's been forever since I've seen this movie. Too bad I probably won't see it all." Alas, I was wrong. Saw the entire movie. Watched more TV. Read more old magazines. Got up and walked around occasionally. Twiddled my thumbs. About 3:30, the woman next to me accidentally hit me with her blanket and we started a conversation. She was a nursing student, almost finished, who was there to get some vericose veins removed. We kept hearing that sometimes they overbook and send people home after they've waited all day and have had no food or water. We were all hoping that didn't happen to us!

At 4, I was dying of thirst. I hadn't had a drop of liquid since 9pm the night before. I begged the nurse there to give me two swallows of water. She asked if I was in pain because they can give people pain meds if they hurt and they get water to swallow the pills. I said no, I really didn't want any medication. Just the same amount of water she would give a patient to take a tablet. She did give me two swallows of water and it was the most blissful moment of the day- cold, wet, simply delicious. I bet Horace and Steve were glad to have it too!

About 4:45 an anesthesiologist finally came to get me. He was a French guy, which I thought was cool. I had an Indian surgeon, a South American surgeon registrar, a French anesthesiologist. I love the diversity in Canberra. Very cool. Anyway, he found a bed and wheeled me down to the pre-operating theatre. Then they told me the catheter goes behind my bladder so they made me walk back down to the waiting room and use the toilet. The surgeons came in, and the anesthesiologist put in a cannula in my hand. They wheeled me into the theatre and slid me over to the operating bed. I remember one of the assistants telling me I had the dexterity of a surgeon to have tied the back of my gown as I did. lol He thought he was going to have to cut it. :) Then I laid down and I don't remember them telling me I was going to sleep or injecting me or anything. I was just OUT.

I woke up and my throat hurt something terrible. There was an attendant sitting next to me, monitoring my bp and temp and all the vitals. I croaked out, asking what time it was. I was worried because I knew I hadn't been able to talk to Mick to tell him how delayed the surgery was and he might be freaking out. My purse was on my bed, and my phone in my purse. So as the attendant told me it was 6:30, I fumbled in my purse and sent Mick a text letting him know surgery was over and I was okay. My stomach hurt and it hurt to move so I didn't do much of that. I was still super groggy from the anesthesia. The attendant asked if I was in pain and gave me something in my cannula to help. He also gave me some water. YAY! They'd told me they would intubate me and I guess they'd had to jam it in my throat because it was killer painful. I didn't have to wait too long in recovery before they wheeled me up to my room. This time, I got my own room. Yay!

I talked to Mick and found out he'd called the hospital and they'd been stupid and not known where I was at about 3:30. Then he stopped by at 5:30 and they figure out I was in surgery and told him it would be a couple of hours (which is crap because they'd told us earlier it would be a 30-45 minute surgery, and that was about right) so to go home. He did. He was making dinner when we talked.

Annie and Branimir came by to see me that night. They were fantastic company and it was so nice to see them. They helped get me situated for the night and stayed for a couple of hours to chat.

Wednesday morning Mick stopped by before work to see me. Soon after he left, they told me I would be discharged. The nurses checked on my bandages and I had to wait around for the okay from my doctor. While I waited, Claire came by to have lunch with me. We had a really lovely chat and talked about them moving and the kiddos and learning to do dialysis. She's such a nice person and I thought it was so sweet of her to come have lunch with me on her break. :)

Finally, a couple of hours later, I got the okay for discharge. Zevi came by to see me and gave me a fistful of blood test forms to use for the next few weeks. I met with Sheng, the PD nurse, who changed my dressings and talked to me about the PD set up for home and the next few weeks. They told me how to care for the wounds and I was free! Annie's mom, Gill, came by to pick me up and take me home so Mick wouldn't have to leave work. Seriously, what great friends and family I have here. They are awesome.

I crashed out that afternoon when I got home and didn't wake up until Mick and the kids got home at 6:45. I was just exhausted. Surgery is no fun. And the limitations about no showers and no lifting and so on were crummy too. I wasn't really supposed to drive for a day or two either. But life marches on and doesn't slow down just because Horace and Steve are slackers.

This past week has been another one of no action. I had blood drawn Friday and then again this past Monday. No major health dramas though, except I thought I might be getting a bit better from the things I could monitor. I'm still losing weight slowly, which is good. I'm still maintaining some kidney function- also good. I'm still tired but not itchy, confused, or nauseous. Very good.

Tuesday I went to the Canberra Hospital to see Sheng again. She changed my dressings and said the catheter looked very, very good. I had been careful not to get it wet and she could tell. So when she cleaned everything up, my tummy started to look better. My belly button had been making a comeback and the two other incisions were healing as well. The catheter tube was fine and dandy. Sheng had me read a few pamphlets, including one called, "So you're having a PD catheter inserted." Hah, a little late for that! They had to swab my nostrils. I don't know if you've ever had that done, but it was terrible. Ewww. Made my eyes water and then I sneezed for a minute afterwards. Blech. Anyway that was to check for MRSA and Staph because if those are present they could cause problems for my catheter and I really don't want an infection. I also got to see how to hook myself up and dialyse and what supplies I would need to keep in our house. It takes up a good bit of room to do home dialysis. Luckily we can make it work. Just need to rearrange our bedroom a bit. Sheng gave me another pamphlet and a training manual to peruse, which I read last night. Fun stuff!

Zevi has called to check on me this week, and Sheng called this morning. They are very diligent and make sure I'm still feeling alright, which speaks volumes to their level of care I reckon. I'm set up for a home visit from Sheng next week and she's setting up a delivery to the house of two weeks of dialysis supplies. I still have a few things to get that I'll need for the area, but I feel like I'm in good shape and being very active about my healthcare. As I should. If I don't care enough to change things and manage my diet and exercise to promote my kidney health, who will? The renal team won't do it for me. Nor should they!

So a week and a couple days after the surgery, I'll say that I am still sore but mostly itchy. Which I think is good because it means I'm healing. I only itch at the incision sites so it's not that my phosphorous levels are sky high or anything. And as for my throat, it still hurts and is sore. It's hard to eat bread or toast. Something about the way I chew it and it's the back roof of my mouth that's still so sore. If you'd asked me before the surgery, I never would have guessed that would bother me so much, but it does! I still get pangs of pain from my incisions but they are few and far between. The things I battle most these days are the constant tiredness and losing my appetite. It's not much fun to plan meals and I need to change that. I'll do a separate post soon about the hard facts about dialysis and kidney disease and how it changes my day to day life. Not the doctors' appointments or the hospital visits or the surgeries, but the day to day living and lifestyle choices that it dictates or at least molds gently. :)

More to come!

Meet Horace and Steve

About a month and a half ago, I went to see my general physician (gp). He was recommended to me by my closest friend in Australia. I can say nothing but good things about Sil. :) Going to the doctor here in AUS is very different than in the US. I arrived about 15 minutes before my scheduled first appointment, ready to fill out loads of paperwork. Imagine my surprise- I was asked to print my full name and address, give my medicare card number, and my phone number. That was IT. When I met Sil, his office was a surprise. Comfortable and warmer than the sterile, brightly lit white rooms I was used to, his office had a big desk and computer, drawers filled with medical and pharmaceutical references, an exam bed off to the side, and a few cushioned chairs which he directed me towards. Sil talked to me, asking about my medical history and taking notes BY HAND. hahaha. Imagine that! He keeps a running, hand written journal for each patient and takes notes as you talk. And after five or ten minutes, once you are comfortable and not on edge, he takes your blood pressure (bp) to get an accurate reading. I like it. No nurse takes your temp, weighs you, etc. You deal solely with your doctor and wait less time to see him/her. It's a much more personal and comfortable experience to go to the doctor.

Anyway, onto current (or more recent) events. Sil changed my bp medication because my bp was high again. It goes through cycles of being well controlled and then not. Each time it starts to slip, we adjust my meds. Despite the loss of now 80lbs (around 35kgs), my bp was still high. Sil wanted to know why and to check on the new medication. So he filled out a piece of paper and said I should get blood work done. It had been years since I'd had any blood work (since after the PEs) so this seemed wise. Little did I know that piece of paper would change my life.

I waited a couple of weeks to get the blood work done. You know how life gets- busy! I made myself do it before the kids' school holidays because I knew I didn't want to drag them to get blood taken and I wanted to give myself enough time to adjust things before my US trip in May. So, on a Friday, I dropped the kiddos off at school at headed for the first time to ACT Pathology. Here in AUS, they have locations scattered around the city that you walk into and hand them the blood work request or urinalysis request. Then they look at your medicare card and call your name when they are ready. I've learned if you time it right (go after 10am) you usually don't have to wait!

I've never been good at having blood drawn. My family will tell you that when I was a kiddo, I would throw tantrums when it was shot time. I believe my dad had to hold me down on a few occasions. After pharmacy school and learning to give immunizations, I decided I'd rather be stuck than stick someone. :) I learned how to do it, but I'm glad that I don't have to wield the needles (yet).

My accent is always an icebreaker. If it's the first time someone's met me, they almost always ask where I'm from or take a guess. So I remember chatting with the lovely woman about America as she vampired me. I went on my way, nervous about what they would find because I thought my cholesterol might be high. Ha! Life has funny little surprises for us, doesn't it?

About four hours later, I got a call from Sil. I was surprised because the office never called me. And it was actually Sil, not one of the receptionists from the front. He said he'd gotten my blood test results and they were "terrible." Um, not a word I want to hear in reference to my health. He asked if I could come in that day. I had to pick Mick and the kids up, but Sil said he'd wait for me. Well shit. Friday night and my doctor is worried enough about my test results that he's willing to wait for me? Not looking good. I warned Mick and waited...and waited...and waited. The three hours until I met with Sil were torture. I just wanted to know what was wrong and what could be done. And I was worried. So so worried.

Sil advised me to go to the ER at one of the local hospitals. He said my kidney function was failing, in the end stage, and waiting wasn't really an option. He said that I needed to be monitored and if it weren't the weekend he might just have me keep getting blood work done but wasn't willing to risk waiting. I left his office in shock, holding an admit form for the ER and wondering what was happening. I told Mick and we discussed it briefly, but there wasn't much to say. Gotta go in and get it checked out. We walked to the car and ran into Nat, one of my good friends. She invited us to dinner but we declined and let her know what was happening.

I drove to the Canberra Hospital ER in a kind of fog. Part of my mind was racing and part was still frozen in wonder and fear. I had to wait in the line at the ER for about 45 minutes. When they took my back to assess me and put me in line, an ambulance came in and my nurse left me for a few minutes. I read the wall hanging which gave the triage criteria and decided I would be waiting a long time. The poor kids were bored out of their minds. They called me back to the ER triage area fairly quickly and started hooking me up. Heart monitors, bp monitors, temp every 30 minutes, oxygen sensor, IV fluids. The whole shebang. The kids were getting more and more freaked out, especially Emily. She is super squeamish about blood and guts and all things medical. Takes after her dad. ;) So Bruce was nice enough to come by and pick up Mick and the kids.

They kept a close eye on me for hours. I found that they were going to admit me and monitor me. The ER doc was super nice and checked me for sensitivity and tenderness. He told me I would probably spend a couple of nights in the hospital and I remember being crestfallen. I'd been hoping maybe the kidney failure was from a medication or could be easily reversed and I would just have one night in the hospital. No such luck. I'd had to fast for the blood test that morning and hadn't eaten since lunch so I was starving. The nice nurses there gave me a lemonade icy pole (popscicle) and that was my dinner at about midnight.

I finally was put in a room about 12:30am. I had three roommates and they were all asleep when I got wheeled in. My phone had died earlier so I couldn't communicate with anyone to tell them what had happened, even Mick. I knew he'd made it home with the kids and they were trying to have dinner and get to sleep.

One of the many things I love about Mick is how he makes me laugh, even if it's a stressful situation. He decided we should name my kidneys so we could coax them back to life. Now, I don't know why he picked the names he did, but he dubbed them Horace and Steve. :) So, the adventures of Horace and Steve! Since then, I was telling Annie about this and she asked why they were guy kidneys, then answered her own question: "Because they are there but aren't working right and aren't reliable!" lol I told her I spent the night before I fell asleep breathing deeply and imagining taking in golden air and breathing out the black smog that was keeping my kidneys from working. Who says visualization isn't good? :) She said I should imagine them floating in fluffy pink clouds and sparkling too. :) So I spent some time that night, talking to Horace and Steve in my mind, willing them to work. And saying some prayers. Wondering how this fit into God's plan for me. Not understanding, but knowing that there was a reason. I never dwelled on it being fair or not because I know life isn't fair and good people get cancer, have struggles, get kidney disease. :) I just reminded myself that my body was made in God's image and I was His and there is a reason that I have this new challenge and have to learn to face it.

Every hour, I had my vitals taken and I was still on IV fluids so that stayed on til about 3am. In the morning, the vampires came and started poking more holes in me. I saw Ubad and Dr. Falk that morning. They told me that I'd have an ultrasound done that morning and were ordering a lot more blood tests to check for everything from HIV to hepatitis to lupus to other auto-immune disorders. That day Mick came to visit me and kept me company. I had an ultrasound and an x ray of my chest. Neither showed any physical obstruction that they could see. They took 8 vials of blood from me that day. Whew! I was starting to look like a pin cushion.

Sunday, Ubad checked on me but there was little to report. He said they would do a biopsy of my kidney the next day and until then would keep monitoring my output and input and all my vitals and of course my blood levels. Sunday was a day of waiting and worrying. I was really scared about having the biopsy and had this feeling of dread. Especially when I learned I'd be awake for it. Ugh. Claire and the kids stopped by to say hello and I was so glad to see them. Em gave me some cute stickers to keep on my gown and Eddie brought me a cup full of roses from Ivan's garden. Em also brought me a cherry sucker. In AUS, cheery flavor is rare so I felt very special. :) The kids are fantastic. :)

Monday I was fasting again for the biopsy. I wasn't allowed to drink anything either. So I was killer thirsty. They didn't do the biopsy until 1 that afternoon so it was more waiting. Mick went down with me but as aforementioned, he is not down with the ickiness of hospitals and blood and guts.So he held my hand until they came to take me in.

For those of you reading who share my hubby's squeamishness, you may want to skip this paragraph. When they took me in to have the biopsy, they had me lay on my back at first and ran an ultrasound to find the kidney they were going to biopsy. Then I was asked to roll onto my stomach and lay as flat as possible. I'd been introduced to the registrar who was going to perform the biopsy earlier, but there were a lot of nurses and techs and a specialist around and I couldn't really see them. They hooked me up to a bp machine and of course my heart rate was high. I was super nervous. They did another ultrasound to find the kidney again and then they gave me a painful shot. It stung a lot and was the first local anesthetic. The registrar made the first cut, which I could feel, then pushed a needle down further and injected another local anesthetic. More stinging. And during the process, they need me awake because I have to hold my breath every so often. When you take a deep breath, your kidneys move back closer to your back so that helps them. They tried three times to get a sample. They kept arguing about the angle (which is not cool when I can hear them!) and they would all agree and say it should be perfect. Then...nothing. The second time the registrar tried, I felt the needle kind of poke my kidney. Weird. A little discomfort. The tool they use sounds like an ear piercing gun. For the third try, the specialist gave it a go. Now...I've tried to explain how this felt. You know that feeling when you hear something that makes you cringe so badly it's like you can feel it? Nails on a chalkboard or something like that? And it's not the noise exactly- it's a feeling that sends shivers through you and makes you feel icky. That's what it felt like when he touched my kidney with the needle the third time. I think I may have jumped a bit even. And that was with the anesthetic. I hate to think what it would feel like without it! :)

They gave up after the third attempt, not sure if they had a sample big enough to do anything with. I had to get my wound dressed and then lay on my back for the rest of the night. I'd been without food or water for 15 hours or so and was desperate for something. Mick was so sweet and fed me an orange and got me a straw to drink my water from. He took care of me that night until he had to go home. Mardy and Ash came to visit me and keep me company. They brought me magazines and were phenomenal comfort. :)

Tuesday morning...it was around 8am. I'd been told the results from the biopsy should be back by then. Dr. Falk came in by himself and closed the curtains. He sat down and we had a long talk. This was the deal- the biopsy hadn't been successful. They didn't know what was causing my kidney problems, but they did know that my kidneys were so small and likely I had chronic kidney failure, not an acute case. They knew the kidneys were functioning at 9%. They knew all that blood work came back negative and thus they had no solutions. Dr. Falk told me that dialysis was going to be likely, and then transplantation. I didn't cry. I tried so hard to hold it all in and keep a positive attitude. I felt like the world had just crashed down around me. I couldn't talk to anyone. After he left, I sent Mick a text. I wrote my parents an email. I sent Jenn an email who'd been keeping me company and encouraging me throughout. I couldn't speak the words. It just felt devastating. Mick was on his way in to the hospital. I still had the rest of the day to do my 24 hour urine collection (I know. Exciting. And as Mick says, when you enter the hospital you leave your dignity at the door) so I knew I wouldn't leave til that was complete. Surprisingly, they were quick and I was discharged by the afternoon with an appointment set for the next week on Monday.

I saw Sil two days later and we discussed steroid possibilities and what was to be next. He ordered more blood tests after reviewing my discharge paperwork to cover some holes in test results. Friday I gave more blood. The next Monday I saw Ting, another registrar.He was very concerned because my kidney function decreased to 7%. He got me an appointment the next week when Dr. Falk was set to return, pushing me in. I was scheduled for a Wednesday morning meeting. I saw Sil again the next day and he ordered more blood tests and wrote me a prescription for the new blood pressure medication. I think Sil sees me as a puzzle (as many people do, hahaha) and is fascinated by my case. I appreciate that he actually whips out his medical references and cross-references with the computer to adjust for renal failure and to look up the best medications to use. Anyway, the blood work came back on Friday and the Canberra Hospital called me to talk about having me come in first thing Monday morning.

Throughout this time, I've felt pretty darn good. The occasional headache, a few bouts of dizziness. No nausea, vomiting, itching, confusion. It's a bit scary to think that I could start being confused. But really, I still function fairly normally. And that's still the case, luckily. I don't feel so bad. Except for the surgery, which I'll get to.

I have a lot I want to get out, about how I actually feel, the thoughts I have about kidney failure, the research, the balancing, the tiredness. But this post is sooooo long already. And it covers the facts up to the surgery. So maybe I can add more tomorrow about the surgery, and then more about my actual life and how it has changed.

I'd like to list out the transplant information as well. :) I'll definitely be making more posts, and they will be more anecdotal and probably more emotional once I get caught up to the current situation. :)