Tuesday 8 May 2012

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. :)