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 28, 2010
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.
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