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!
