Another Monday down - that means that Tuesday will be here soon. I look forward to Tuesdays now because they are my "markers" of how many more weeks. Three weeks from tomorrow - WOW. I'm so ready for this part of my life to begin - I mean, I'm not literally ready (so many things to do to get ready!), but I'm ready to move past dialysis and into the next phase of my journey.
This morning I had to call in for some refills on prescriptions and I looked at all the pill bottles on my machine - 11 of them - and I wonder how many will replace them once I get the transplant. I know I'll be on several at least at the beginning. I also know that the meds for transplant patients are very expensive. Medicare will help pay the first three years, but then I'll be on my own. It's really stupid the way that works.
Yes, the meds are expensive, but dialysis is about 10 times as expensive. If I can't afford my meds and don't take them, I'll reject the kidney and end back up on dialysis and back on Medicare. The bill for dialysis is about $30,000 a month. Don't you think the government would wise up and figure out that it's cheaper to pay for the anti-rejection meds? Oh, wait, this is the same group that thinks socialized medicine is the way to go - never mind! It was a stupid question.
I got a nice surprise on Facebook tonight - my cousin-in-law Meg "friended" me and she has The Kidney Project listed as one of her favorite causes! I love seeing people's comments and seeing the list of folks that say they are praying for Josh and me. We'll take all the prayers we can get and we appreciate every word sent to God's ears. We're almost at 100 FB friends and the blog is being well-read too. Josh is extremely busy this week because of month-end and budget, so I don't know if he'll post this week.
Time for bed.
Monday, August 30, 2010
Saturday, August 28, 2010
It's Been a Long Day
Saturday morning 7:45 am and I had to be at a meeting! Not exactly my idea of a good way to start the day.
It's the weekend of our annual Belvoir Credit Union Board retreat. It was a good day today and I expect tomorrow will be better since we'll be working on the nitty-gritty tomorrow. Today was mostly overview and trying to get us thinking.
We had dinner at Carraba's and it was wonderful (as usual). Had some great conversation with good friends and members of the Board. One friend, a cancer survivor, amazes me with his courage and outlook on life. I'm so lucky to know so many cool people.
Later tonight, life took one of those crazy wrong turns again. I lost a Crown (no, not a tiara type crown - one that goes on your teeth). Since it's a Saturday night, that means I'll have to deal with it until at least Monday morning. That means no solid food or cold drinks - it would be too painful. I'm hoping I'll be able to sleep.
I'm hooked up for the night so that I can get up early again tomorrow morning for the second day of our retreat. Saturday is usually my night to stay up late and act like a normal person (one that isn't on dialysis). Oh well, there's always next week!
Night.
It's the weekend of our annual Belvoir Credit Union Board retreat. It was a good day today and I expect tomorrow will be better since we'll be working on the nitty-gritty tomorrow. Today was mostly overview and trying to get us thinking.
We had dinner at Carraba's and it was wonderful (as usual). Had some great conversation with good friends and members of the Board. One friend, a cancer survivor, amazes me with his courage and outlook on life. I'm so lucky to know so many cool people.
Later tonight, life took one of those crazy wrong turns again. I lost a Crown (no, not a tiara type crown - one that goes on your teeth). Since it's a Saturday night, that means I'll have to deal with it until at least Monday morning. That means no solid food or cold drinks - it would be too painful. I'm hoping I'll be able to sleep.
I'm hooked up for the night so that I can get up early again tomorrow morning for the second day of our retreat. Saturday is usually my night to stay up late and act like a normal person (one that isn't on dialysis). Oh well, there's always next week!
Night.
Friday, August 27, 2010
My Davita Nurse
Tonight I want to talk a little about how important it is to have a good clinical team. The folks at Davita have been wonderful! There is one particular person though who is the best - Jody.
Jody is my PD nurse. She has been with me since the beginning of all this. She trained me how to do dialysis and has been there for me no matter what I needed. She's there to constantly remind me (always in a nice way) that I need to take my meds correctly, use aseptic techniques, etc., etc. She's listened to me moan and complain, but I can't ever remember hearing her complain about anything.
She's not one of those in-your-face "way too happy" people, but she's always pleasant and somehow always makes me feel better. She's very supporting, knowledgeable and patient. And if she's been patient with me for 6+ years - she is a saint in my book! She sees me twice a month, every month and yet she's never been mean or short with me. She has always taken her time, answered my calls, and been there for me.
Jody swears that I won't come see her anymore once I have the transplant, but I'm going to prove her wrong. As soon as I'm able, I'm going to pop in on clinic day and let her use me as a "before and after" example. Watch out Jody - you know know when I'll show up!
Until tomorrow.....
Jody is my PD nurse. She has been with me since the beginning of all this. She trained me how to do dialysis and has been there for me no matter what I needed. She's there to constantly remind me (always in a nice way) that I need to take my meds correctly, use aseptic techniques, etc., etc. She's listened to me moan and complain, but I can't ever remember hearing her complain about anything.
She's not one of those in-your-face "way too happy" people, but she's always pleasant and somehow always makes me feel better. She's very supporting, knowledgeable and patient. And if she's been patient with me for 6+ years - she is a saint in my book! She sees me twice a month, every month and yet she's never been mean or short with me. She has always taken her time, answered my calls, and been there for me.
Jody swears that I won't come see her anymore once I have the transplant, but I'm going to prove her wrong. As soon as I'm able, I'm going to pop in on clinic day and let her use me as a "before and after" example. Watch out Jody - you know know when I'll show up!
Until tomorrow.....
Thursday, August 26, 2010
25 Days to Go
According to my countdown timer, I have 25 days to go until I get my transplant. I have to admit that I am scared to death. I had a total meltdown today and couldn't stop crying. I know it's all the pent up emotions in me coming out, but still, it wasn't fun and I have a huge headache now!
Anyway, back to dialysis. I had to get on the machine early tonight because I have to take my hubby to the train station in the morning. This is another one of the disadvantages of dialysis - it gets in the way of normal life. Instead of just being able to roll out of bed and throw on a pair of jeans, I will have to stop my machine, mask up, use my anti-bacterial stuff on my hands, then clamp both my catheter and the tube from the cassette. Then I'll have to open up two sterile packages - each containing a different type of cap for the two different lines. I'll cap both off, then roll out of bed and throw my jeans on.
Once I return home I will have to wash my hands well and dry them with a paper towel (too many germs on a cloth towel), mask back up and take the caps off both the cassette tube and my catheter and hook them together. Then I'll push the button to restart the machine and try to go back to sleep.
Okay, maybe I'm being over dramatic here - it's not really that difficult or time-consuming. It's just a small nuisance - one that I'm actually lucky to have.
40 years ago when my Dad was on dialysis, he had much more to do to prepare for dialysis and he couldn't just hook and unhook when he wanted. Once he was on the "artificial kidney", he was on it for 10 hours. Wow, it's amazing how far we've come in dialysis land.
Tomorrow I'll tell you about the great Davita team I have.
Anyway, back to dialysis. I had to get on the machine early tonight because I have to take my hubby to the train station in the morning. This is another one of the disadvantages of dialysis - it gets in the way of normal life. Instead of just being able to roll out of bed and throw on a pair of jeans, I will have to stop my machine, mask up, use my anti-bacterial stuff on my hands, then clamp both my catheter and the tube from the cassette. Then I'll have to open up two sterile packages - each containing a different type of cap for the two different lines. I'll cap both off, then roll out of bed and throw my jeans on.
Once I return home I will have to wash my hands well and dry them with a paper towel (too many germs on a cloth towel), mask back up and take the caps off both the cassette tube and my catheter and hook them together. Then I'll push the button to restart the machine and try to go back to sleep.
Okay, maybe I'm being over dramatic here - it's not really that difficult or time-consuming. It's just a small nuisance - one that I'm actually lucky to have.
40 years ago when my Dad was on dialysis, he had much more to do to prepare for dialysis and he couldn't just hook and unhook when he wanted. Once he was on the "artificial kidney", he was on it for 10 hours. Wow, it's amazing how far we've come in dialysis land.
Tomorrow I'll tell you about the great Davita team I have.
Wednesday, August 25, 2010
The Basics
Kidney: (from Wikopedia) Paired organs that serve the body as a natural filter of the blood and remove waste. They also serve homeostatic functions such as regulating electrolytes, blood pressure and acid-base balance.
Since November 17, 2005, my "kidney" has been peritoneal dialysis (or "PD"). PD is one form of dialysis and, in my opinion, is the easiest on your body. With PD, there is a catheter placed in the abdomen and dialysate is introduced through that catheter. The fluid stays in the abdomen for a period of time and is then drained. This can be done manually or with a machine.
When I first started dialysis, I was doing manual exchanges. This means that four times a day, I shut myself in a clean room with no fans or moving air, put on a mask and hooked up to the dialysate bags. There were two bags - one full of dialysate which was high on a pole and an empty bag that lay on the floor.
After "hooking up", I drained the fluid that was already in me into the drain bag. Then I would close off the drain bag and open up the line to the bag with the dialysate. The fluid (warmed to body temperature) would flow into me. The whole process took anywhere from 30-45 minutes. Once done, I would "unhook" and then go about my normal day until it was time for another exchange.
After a month or two, I talked my PD nurse into allowing me to go on the dialysis machine. The Baxter (one of two brands that I know of) machine does the exchanges for me while I sleep at night. This allows me to work full-time and enjoy my days.
PD is not without its challenges, but more on that in later posts. I am scheduled to get a kidney transplant in 4 weeks and I want to make sure I keep a journal. This blog will serve as my journal and keep track of my journey, both through my days of dialysis until the transplant and then through new life with a transplanted kidney from a wonderful friend.
That friend is Josh and we met at work. We used to work in offices about 15 miles apart, but he has since been promoted and now works in our corporate offices in another city about 90 miles away. A few months ago, I posted my angst on Facebook about being on the "backup list" for a cadaver kidney and not getting it. That post on Facebook was the best thing I ever did!
From that post, Josh decided that he wanted to be a living donor. He did his research and got tested. Yesterday we went for our 30-day blood test to make sure that my blood doesn't reject him. The transplant team seems confident, so we're assuming that it is full steam ahead. Josh is blogging about what it is like to be a living donor. You can follow him on http://www.thekidneyproject.com/.
That's it for today. Stay tuned....
Since November 17, 2005, my "kidney" has been peritoneal dialysis (or "PD"). PD is one form of dialysis and, in my opinion, is the easiest on your body. With PD, there is a catheter placed in the abdomen and dialysate is introduced through that catheter. The fluid stays in the abdomen for a period of time and is then drained. This can be done manually or with a machine.
When I first started dialysis, I was doing manual exchanges. This means that four times a day, I shut myself in a clean room with no fans or moving air, put on a mask and hooked up to the dialysate bags. There were two bags - one full of dialysate which was high on a pole and an empty bag that lay on the floor.
After "hooking up", I drained the fluid that was already in me into the drain bag. Then I would close off the drain bag and open up the line to the bag with the dialysate. The fluid (warmed to body temperature) would flow into me. The whole process took anywhere from 30-45 minutes. Once done, I would "unhook" and then go about my normal day until it was time for another exchange.
After a month or two, I talked my PD nurse into allowing me to go on the dialysis machine. The Baxter (one of two brands that I know of) machine does the exchanges for me while I sleep at night. This allows me to work full-time and enjoy my days.
PD is not without its challenges, but more on that in later posts. I am scheduled to get a kidney transplant in 4 weeks and I want to make sure I keep a journal. This blog will serve as my journal and keep track of my journey, both through my days of dialysis until the transplant and then through new life with a transplanted kidney from a wonderful friend.
That friend is Josh and we met at work. We used to work in offices about 15 miles apart, but he has since been promoted and now works in our corporate offices in another city about 90 miles away. A few months ago, I posted my angst on Facebook about being on the "backup list" for a cadaver kidney and not getting it. That post on Facebook was the best thing I ever did!
From that post, Josh decided that he wanted to be a living donor. He did his research and got tested. Yesterday we went for our 30-day blood test to make sure that my blood doesn't reject him. The transplant team seems confident, so we're assuming that it is full steam ahead. Josh is blogging about what it is like to be a living donor. You can follow him on http://www.thekidneyproject.com/.
That's it for today. Stay tuned....
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