Two weeks ago today I received the most amazing gift I will ever receive - a kidney from a living donor (Josh Rinehults). Josh used to work at our Manassas office as our Controller. I was in the Woodbridge office, but we were both members of the leadership team so I had lots of contact with him. A couple years ago, he left us to work at the Media General corporate office in Richmond. There have been a few emails back and forth, but not much else; until I posted on Facebook that I needed a kidney. Josh wrote back almost immediately that he'd like to donate to me. I didn't take him seriously at first, but when he called the next day to bug me about the number for Fairfax Inova Transplant Center, I gave it to him.
Almost immediately, he went into intensive testing to make sure that he was a good donor. All his tests turned out good and he called me to set the date. I wouldn't allow myself to get my hopes up because I had three people before that had made it "mostly" through the tests until they found medical issues of their own (as a side here - all were from work!). We had to work around budget season because of Josh's job, but we settled on September 21. That was two weeks and two surgeries ago.
Two weeks ago, Josh went under surgery for removal of his kidney and I went under surgery to have Josh's kidney placed in my right groin area. While I am still having a few pain issues, I am getting better and better every day and having my life back is simply amazing. I no longer have to worry about high phosphorous or being hooked up to a dialysis machine every night for 9 hours. I no longer have to worry about having enough room for my machine and my supplies when I travel. I can't wait to go on my first trip to a hotel and not have to worry about having to take 9 pieces of luggage for a 2-3 day trip!
My potassium levels are a little high and my pulse is also high. Both of these may be the result of one of the meds that I am on (13 pills at 8:00 in the morning, 1 at 2:00 in the afternoon, and another 8 at 8:00 in the evening). Yes, that is a lot of pills, but they will slowly dwindle down from month to month. Eventually, I'll probably only be on 5-6 pills a day (can't wait for that!). I also have to measure my liquid intake and output. That's not much fun either, but it's a small thing compared to having a normal life back. I also have to wear nothing but sweats for the next couple of weeks - luckily I don't have anywhere fancy to go, so this shouldn't be a problem - plus, it's super comfortable!
The last two issues are the biggest problems for me: 1. I can't lift anything over 5-10 pounds. That means I can't pick the dogs up! However, they still manage to flank me on the couch and at night. 2. I can't drive. Scott is getting very tired of "Driving Miss Daily" (as he calls it), but I should be able to start trying very small trips this weekend - no more than 1 or 2 miles until I build up my confidence again and make sure that I can put enough force on the brake pedal.
I'm logging a lot of TV, computer, and Kindle time, but I really need to get out and walk. The weather hasn't cooperated the last two days, but hopefully tomorrow will be better. I know I won't be able to make it very far at first -- I have been sitting on my butt for two weeks - but I know that the sooner I start, the faster I'll get back to normal. Normal? Well, better than the "normal" for the last 6 years and 9 months!
Tuesday, October 5, 2010
Tuesday, September 28, 2010
1 Week Since Transplant
It has now been 7 days since I received the incredible gift of a donor kidney from Josh Rinehults. I'm still in some pain, mainly at the incision site, but it is getting less and less every day. In this post, I want to record what I remember about the transplant and hospital stay.
Tuesday, September 21 - 5:30 am. Scott and I arrive at Fairfax Inova Surgical Center. There are only a few lights on, but we sit and wait. At approximately 5:50 am, Josh and his mom, Melanie, arrive. At 6:00 we are allowed to "sign in" and wait to be called.
While waiting to be called, Melanie handed me a package and card. The card was handwritten and was absolutely beautiful. She also gave me a Pandora bead - the one that is a little gift box! What a perfect choice! (I had noticed her Pandora bracelet a week ago when we went for our pre-op testing - it seems we both like Pandora!).
Josh was called to go back first and so Scott and I waited. While we were waiting, this big, booming voice came around the corner - it was Tony Ankrom! He had driven all the way from the northern panhandle of West Virginia to see me and to make sure that Scott didn't have to wait alone. Susan Svihlik, a friend of mine, also showed up to wait although I didn't get a chance to see her before I went back. Just knowing she was there helped.
Finally, they called my name. Scott and I went back and I got to change into that sexy hospital gown that all the latest surgical patients are wearing (why do all the hospitals have the same fabric?????). The doctors and nurses started flowing and I finally started getting some information on what was about to happen. They kept me up-to-date on what was happening in Josh's surgery and finally told me it was time to go. I was petrified. I had been crying off and on for the last hour laying on the stretcher - and they finally decided to give me something to relax.
That's the last I remember until I woke up in recovery. Apparently, I was having a great deal of difficulty breathing. Everyone was rushing around, I was gasping for breath, and there were people everywhere! Finally, after about 2 hours, they decided I was stable and allowed Scott back to see me. I knew the dogs would be starving and that it had been a long day for him, so I sent him home since I wouldn't get into a real room until almost 9:30 pm.
Tuesday, Sept. 21 - 9:30 pm - Room 777 (yes 777!). I arrived in the room that was to be my home for the next couple of days. I discovered that I had a breathing tube inserted for the surgery and that when they removed it, I had trouble breathing - hence all the activity in the recovery room. I also found out that in addition to the usual IV, I had a "main line" inserted in my neck that went straight to my heart. Scary! That main line would be used for fluids, medicines, and information until Thursday afternoon. It was really uncomfortable, but all in all, I was feeling pretty good. The first night was restful as I became best buds with the pain management button. Whoa - that was a great little thing to have. Anytime I felt the slightest pain, all I had to do was press the button and pain medication was inserted directly into the main line.
Wednesday, Sept. 22 - 24 hours after surgery and I'm begging them to let me out of bed. The nurses finally allowed me up to sit in the chair. Wohoo! I called my aunt to let her know that I was okay and became even better friends with Mr. Pain Button. The next two days were spent convincing the doctors that I would be better off at home. Between the air mattress that adjusted itself every time I got comfortable to the horrible food - I was ready to go home.
Thursday, September 23 - No one told me about this horrible itching! Apparently it is a side effect of a transplant and not one person had mentioned it to me. It is so bad that I have scratches all over my body because I can't control the scratching! The good news is that the Dr. says I can go home! At about 8:00 pm, Scott showed up to bring me home. After what seemed like a very long ride, we arrived home to the dogs and my own bed! Oh, life is sweet!
More tomorrow on the following days....
Tuesday, September 21 - 5:30 am. Scott and I arrive at Fairfax Inova Surgical Center. There are only a few lights on, but we sit and wait. At approximately 5:50 am, Josh and his mom, Melanie, arrive. At 6:00 we are allowed to "sign in" and wait to be called.
While waiting to be called, Melanie handed me a package and card. The card was handwritten and was absolutely beautiful. She also gave me a Pandora bead - the one that is a little gift box! What a perfect choice! (I had noticed her Pandora bracelet a week ago when we went for our pre-op testing - it seems we both like Pandora!).
Josh was called to go back first and so Scott and I waited. While we were waiting, this big, booming voice came around the corner - it was Tony Ankrom! He had driven all the way from the northern panhandle of West Virginia to see me and to make sure that Scott didn't have to wait alone. Susan Svihlik, a friend of mine, also showed up to wait although I didn't get a chance to see her before I went back. Just knowing she was there helped.
Finally, they called my name. Scott and I went back and I got to change into that sexy hospital gown that all the latest surgical patients are wearing (why do all the hospitals have the same fabric?????). The doctors and nurses started flowing and I finally started getting some information on what was about to happen. They kept me up-to-date on what was happening in Josh's surgery and finally told me it was time to go. I was petrified. I had been crying off and on for the last hour laying on the stretcher - and they finally decided to give me something to relax.
That's the last I remember until I woke up in recovery. Apparently, I was having a great deal of difficulty breathing. Everyone was rushing around, I was gasping for breath, and there were people everywhere! Finally, after about 2 hours, they decided I was stable and allowed Scott back to see me. I knew the dogs would be starving and that it had been a long day for him, so I sent him home since I wouldn't get into a real room until almost 9:30 pm.
Tuesday, Sept. 21 - 9:30 pm - Room 777 (yes 777!). I arrived in the room that was to be my home for the next couple of days. I discovered that I had a breathing tube inserted for the surgery and that when they removed it, I had trouble breathing - hence all the activity in the recovery room. I also found out that in addition to the usual IV, I had a "main line" inserted in my neck that went straight to my heart. Scary! That main line would be used for fluids, medicines, and information until Thursday afternoon. It was really uncomfortable, but all in all, I was feeling pretty good. The first night was restful as I became best buds with the pain management button. Whoa - that was a great little thing to have. Anytime I felt the slightest pain, all I had to do was press the button and pain medication was inserted directly into the main line.
Wednesday, Sept. 22 - 24 hours after surgery and I'm begging them to let me out of bed. The nurses finally allowed me up to sit in the chair. Wohoo! I called my aunt to let her know that I was okay and became even better friends with Mr. Pain Button. The next two days were spent convincing the doctors that I would be better off at home. Between the air mattress that adjusted itself every time I got comfortable to the horrible food - I was ready to go home.
Thursday, September 23 - No one told me about this horrible itching! Apparently it is a side effect of a transplant and not one person had mentioned it to me. It is so bad that I have scratches all over my body because I can't control the scratching! The good news is that the Dr. says I can go home! At about 8:00 pm, Scott showed up to bring me home. After what seemed like a very long ride, we arrived home to the dogs and my own bed! Oh, life is sweet!
More tomorrow on the following days....
Tuesday, September 14, 2010
6 Days to Go
I believe. I believe. And with the pixie dust of prayer, this is going to happen and it's going to go well.
In 7 days I will wake up with a new kidney. It almost feels like I'm having a baby. In 7 days, I will have this new life that I will need to nurture and protect. Chris (the pre-transplant coordinator assigned to Josh and I) told me that I won't feel better right away. She said it usually takes a couple of weeks. However, my friend Kris that had a transplant last summer called me the day after her transplant and told me how wonderful she felt. I guess it all depends on the patient. I don't care if I wake up feeling better or it takes two weeks - just so I feel better.
We got our pre-surgery orders today. Josh listed everything in his blog for the pre-surgery. I also got my "transplant Bible" (as Chris calls it) that tells me a little abou the drugs I will be placed on and how often I'll have to go to Clinic. The book also says I can't drive for 4 weeks - I'm not sure if waiting that long is really necessary or if it's just the Clinic's way to get me to start walking (because heaven knows I can't stay in the house for 4 weeks!).
I can't be around crowds for 3 months - so basically until 2011. And, of course, I need to stay away from sick people. I'll be on lots of drugs - at least at first. The good news is that they are going to TRY to keep me off of steroids. This is really good news to me because the list of things that can happen when you're on steroids are not things I want to deal with (like growing hair everywhere except your head, acne, etc.).
I'll probably get released from the hospital on Friday or Saturday. Then I'll need to return to the Clinic at the Transplant Center on Monday and Thursday the first and second weeks, then once a week for weeks 3-6. After that, I'll go about once a month until 6 months. Then they turn me back over to my regular nephrologist and I only have to go to the Clinic every couple of months. I'll need to see my regular nephrologist at least once a month for a year or two, then things will space out.
It's a little overwhelming right now, but I know this is what is supposed to happen in my life right now so I'm good with it. I'll do what I have to in order to take care of my new "baby".
Goodnight!
In 7 days I will wake up with a new kidney. It almost feels like I'm having a baby. In 7 days, I will have this new life that I will need to nurture and protect. Chris (the pre-transplant coordinator assigned to Josh and I) told me that I won't feel better right away. She said it usually takes a couple of weeks. However, my friend Kris that had a transplant last summer called me the day after her transplant and told me how wonderful she felt. I guess it all depends on the patient. I don't care if I wake up feeling better or it takes two weeks - just so I feel better.
We got our pre-surgery orders today. Josh listed everything in his blog for the pre-surgery. I also got my "transplant Bible" (as Chris calls it) that tells me a little abou the drugs I will be placed on and how often I'll have to go to Clinic. The book also says I can't drive for 4 weeks - I'm not sure if waiting that long is really necessary or if it's just the Clinic's way to get me to start walking (because heaven knows I can't stay in the house for 4 weeks!).
I can't be around crowds for 3 months - so basically until 2011. And, of course, I need to stay away from sick people. I'll be on lots of drugs - at least at first. The good news is that they are going to TRY to keep me off of steroids. This is really good news to me because the list of things that can happen when you're on steroids are not things I want to deal with (like growing hair everywhere except your head, acne, etc.).
I'll probably get released from the hospital on Friday or Saturday. Then I'll need to return to the Clinic at the Transplant Center on Monday and Thursday the first and second weeks, then once a week for weeks 3-6. After that, I'll go about once a month until 6 months. Then they turn me back over to my regular nephrologist and I only have to go to the Clinic every couple of months. I'll need to see my regular nephrologist at least once a month for a year or two, then things will space out.
It's a little overwhelming right now, but I know this is what is supposed to happen in my life right now so I'm good with it. I'll do what I have to in order to take care of my new "baby".
Goodnight!
Wednesday, September 8, 2010
One of those days
Today was one of those days where I just wished I had stayed in bed all day. Between having my HR bosses at the office all day and dealing with my nerves about the surgery, I would have been better off under the covers!
However, there was some good news today (of course, it can't trump yesterday's news that Josh and I are good "to go" on the surgery). I found out from a transplant patient that I will be able to eat small portions of crab and liver after transplant! I had been told that I wouldn't be able to eat either. I know I'll have to have small portions because of the amount of protein, but at least I'll still be able to have my beloved blue crabs and will still be able to enjoy dirty rice!
Also of interest today is that our company magazine might do a feature on Josh and I. Neither of us is quite sure how we feel about it, but we're considering it. It would be great to educate more people on how easy it is to donate, but Josh is not wanting the story to turn into a "Josh worship".
Oh, and one more thing. I thought I was getting a 29 year old kidney. I remembered today that Josh was born on September 14, so I'll be getting a 30-year old kidney instead.
That's about it for today. I wish I could tell you that life was more exciting, but when you're getting a new kidney in 12 days, everything else just pales in comparison.
However, there was some good news today (of course, it can't trump yesterday's news that Josh and I are good "to go" on the surgery). I found out from a transplant patient that I will be able to eat small portions of crab and liver after transplant! I had been told that I wouldn't be able to eat either. I know I'll have to have small portions because of the amount of protein, but at least I'll still be able to have my beloved blue crabs and will still be able to enjoy dirty rice!
Also of interest today is that our company magazine might do a feature on Josh and I. Neither of us is quite sure how we feel about it, but we're considering it. It would be great to educate more people on how easy it is to donate, but Josh is not wanting the story to turn into a "Josh worship".
Oh, and one more thing. I thought I was getting a 29 year old kidney. I remembered today that Josh was born on September 14, so I'll be getting a 30-year old kidney instead.
That's about it for today. I wish I could tell you that life was more exciting, but when you're getting a new kidney in 12 days, everything else just pales in comparison.
Monday, September 6, 2010
I Knew It Would Happen
Last night, just before midnight, I got a call from the transplant center. Yup, you guessed it - they had a kidney for me. I was number 2 on the list which meant that if I had said yes, I would have a new kidney today.
Bonnie was very nice about it and said that she knew I had a live donor, but she went ahead and called anyway since I was number 2. She said it was up to me.
After hearing that the donor was 55, killed in an auto accident, I was thinking no - I'd rather have the younger kidney. Then she told me that he was a lifetime smoker, had high blood pressure, and was an intravenous drug user in his teens and early twenties. Decision made - no thank you.
I feel horrible - here is a family that is suffering a great loss and they offer his organs and I'm being picky about it. I'm sure they found a taker for the organs - there are so many people waiting on donations that there is no doubt there.
I'm not sure what I would have done had I not had Josh's offer on the table. Although I've been called over 15 times as a backup, this was my first time being called as one of the "chosen 2". It just didn't feel right and the only way I can make these decisions is to trust what my heart is telling me.
Please say a prayer for me that this call was not "the one" and that this will work out with Josh.
Bonnie was very nice about it and said that she knew I had a live donor, but she went ahead and called anyway since I was number 2. She said it was up to me.
After hearing that the donor was 55, killed in an auto accident, I was thinking no - I'd rather have the younger kidney. Then she told me that he was a lifetime smoker, had high blood pressure, and was an intravenous drug user in his teens and early twenties. Decision made - no thank you.
I feel horrible - here is a family that is suffering a great loss and they offer his organs and I'm being picky about it. I'm sure they found a taker for the organs - there are so many people waiting on donations that there is no doubt there.
I'm not sure what I would have done had I not had Josh's offer on the table. Although I've been called over 15 times as a backup, this was my first time being called as one of the "chosen 2". It just didn't feel right and the only way I can make these decisions is to trust what my heart is telling me.
Please say a prayer for me that this call was not "the one" and that this will work out with Josh.
Thursday, September 2, 2010
Choices
Sometimes in life, you have to make choices. I chose peritoneal dialysis over hemodialysis over 6 years ago. I made the choice for PD mainly because I knew how hard hemodialysis was on the body and how limited the diet was. Another consideration was that I wanted to keep working full time.
With PD, I'm allowed to eat just about anything Iwant to as long as I take my phosphorous binders. They're huge pills called Renvela (or Phoslo for some people). I do have to watch foods and drinks high in phosphorous like Colas and chocolate, but generally the diet for a PD patient is very easy to follow.
Also with PD, I'm allowed to drink more than if I was on hemodialysis. This is because I do the dialysis more often, so the toxins in my body don't build up as much between treatments.
It's odd because for a good part of my life, my lunch consisted of a Diet Coke and a Three Muskateers bar. Yes, I know - not exactly a healthy lunch, but it satisfied me for years! Now I'd LOVE to have either one for lunch! Oh well - after transplant.....
With PD, I'm allowed to eat just about anything Iwant to as long as I take my phosphorous binders. They're huge pills called Renvela (or Phoslo for some people). I do have to watch foods and drinks high in phosphorous like Colas and chocolate, but generally the diet for a PD patient is very easy to follow.
Also with PD, I'm allowed to drink more than if I was on hemodialysis. This is because I do the dialysis more often, so the toxins in my body don't build up as much between treatments.
It's odd because for a good part of my life, my lunch consisted of a Diet Coke and a Three Muskateers bar. Yes, I know - not exactly a healthy lunch, but it satisfied me for years! Now I'd LOVE to have either one for lunch! Oh well - after transplant.....
Wednesday, September 1, 2010
It's Getting Worse
I'm a bundle of nerves. I can't keep my mind on anything longer than about 3 seconds. It's the "not knowing" that is killing me. I keep reading searching the internet for information on what I'm going to be going through and I find conflicting reports everywhere.
I don't know what I will and will not be able to do. I don't know what I can and can't eat. The only thing that I can find that is consistent is that I'll gain weight - oh great - just the kind of news I was waiting to hear.
I had another meltdown last night (which is why I didn't write anything). Poor Scott - he got the worst of it. He even went grocery shopping just to get away from me. I'm a little better tonight, but still scared to death.
I just wish I could sleep through these next 19 days.
I don't know what I will and will not be able to do. I don't know what I can and can't eat. The only thing that I can find that is consistent is that I'll gain weight - oh great - just the kind of news I was waiting to hear.
I had another meltdown last night (which is why I didn't write anything). Poor Scott - he got the worst of it. He even went grocery shopping just to get away from me. I'm a little better tonight, but still scared to death.
I just wish I could sleep through these next 19 days.
Monday, August 30, 2010
Another Monday
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.
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.
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....
Subscribe to:
Comments (Atom)