Hi, all. Just a note that my recipient's first follow-up since surgery is at 7:30 tomorrow morning. All of his numbers look good so far and some are still dropping. They are working at adjusting his meds which will take some time. Keep him in your thoughts and prayers.
I would also like to ask that all of you keep someone else in your thoughts and prayers. I don't know his name, but I have a friend emailed me about him. He is a reader of her blog (http://www.restaurantwidow.com/ for all you foodies out there) and had a kidney transplant in Columbus, Oh on Jan. 15. His donor was his best friend. When they opened up the donor, they found cancer on the kidney to be donated. It was a type that doesn't spread quickly so they removed the cancerous area and transplanted anyway. Please keep both of them in your thoughts and wish them well.
As for me, pain is hardly noticeable, still mostly when trying to sleep or if I stretch too much. (I know, that sentence is a grammatical horror but I don't really care :). I must admit to sneaking out to go to the store and to Dairy Queen today. Driving wasn't too bad and I waited 1 1/2 weeks instead of 2. I didn't go far and don't think sitting in the car for more than 15 to 20 minutes would feel very good right now. I know, I should have waited but I was going stir crazy and needed to see other human beings and ice cream made me happy!
I will try to update about the follow-up appointment sometime tomorrow.
Wednesday, January 30, 2008
Monday, January 28, 2008
Can't Sleep
As those of you reading this blog know, I am one week and 2 days post-op. I have everything caught up to the day that I was released from the hospital and now I will fill in the rest of this past week for you.
I do have some pain, some days it is almost unnoticeable and on others it hurts. It isn't anything unbearable, just sort of annoying. The great majority of it has to do with sleeping. I am just now able to sleep on my right side on top of pillows. Sleeping on my back was more painful and I seem to move less when on my side. I will praise the day that I can roll on my stomach comfortably! I took the advice of some others who have donated in the past and invested in body pillows. It really helps to sort of surround yourself with your bed pillows, support your back with one and I keep a body pillow on each side. The rest of the pain seems to come from the inside and it just feels like the muscles that were cut through are healing. Again, it isn't unbearable but annoying.
Itching has been driving me nuts this past week. My incision is healing :), but boy would I love to scratch it! I am trying to figure out how to deal with the itching but no good ideas yet. As soon as my steri-strips fall off, I plan on using lots of cocoa butter and Neosporin which hopefully will cut down on ther itching.
My appetite is almost normal again. I have been trying to drink a ton of water and eat high fiber foods because you really want to avoid constipation after you donate. Your surgeons will talk to you about that and more than likely will suggest using colace for a while.
I am walking a little more each day. I aim for 2o minutes at least 3 times a day but some days you just don't feel that strong. I do what I can. My energy level is slowly increasing so most days I can make my walking goal. Just don't overdo it. You also don't want to stay in bed all the time. It weakens your body and will make your recovery period longer. Walk as much as you can tolerate but you aren't training for a marathon.
If anyone has questions that you would rather not post, please email them to me at kdh621@gmail.com and I will get back to you as soon as possible.
Good night!
I do have some pain, some days it is almost unnoticeable and on others it hurts. It isn't anything unbearable, just sort of annoying. The great majority of it has to do with sleeping. I am just now able to sleep on my right side on top of pillows. Sleeping on my back was more painful and I seem to move less when on my side. I will praise the day that I can roll on my stomach comfortably! I took the advice of some others who have donated in the past and invested in body pillows. It really helps to sort of surround yourself with your bed pillows, support your back with one and I keep a body pillow on each side. The rest of the pain seems to come from the inside and it just feels like the muscles that were cut through are healing. Again, it isn't unbearable but annoying.
Itching has been driving me nuts this past week. My incision is healing :), but boy would I love to scratch it! I am trying to figure out how to deal with the itching but no good ideas yet. As soon as my steri-strips fall off, I plan on using lots of cocoa butter and Neosporin which hopefully will cut down on ther itching.
My appetite is almost normal again. I have been trying to drink a ton of water and eat high fiber foods because you really want to avoid constipation after you donate. Your surgeons will talk to you about that and more than likely will suggest using colace for a while.
I am walking a little more each day. I aim for 2o minutes at least 3 times a day but some days you just don't feel that strong. I do what I can. My energy level is slowly increasing so most days I can make my walking goal. Just don't overdo it. You also don't want to stay in bed all the time. It weakens your body and will make your recovery period longer. Walk as much as you can tolerate but you aren't training for a marathon.
If anyone has questions that you would rather not post, please email them to me at kdh621@gmail.com and I will get back to you as soon as possible.
Good night!
Saturday, January 26, 2008
Monday: Released from the hospital
Ok, I got to leave the hospital today. They removed my pain ball (no more tubes!), took some blood for labs, introduced me to the post-transplant coordinators and gave me a ton of discharge instructions. No driving for 2 weeks, no driving while under the influence of Percocet, no lifting for 6 weeks, get plenty of rest and did I say no lifting?
Yes, I was ready to leave but I wanted to stay with "G." The doctors said he would be ready to leave Wednesday if he kept doing so well. Since sleeping in chairs would have been impossible for me, I left.
The car ride home was painful. I felt every bump. If you find yourself in this position, I suggest padding your car with pillows.
"G's" parents brought me home. Along the way, we stopped at Kroger so I could fill my prescription and get the other things the doctors told me to buy. I also bought food to make dinner.
Upon entering the apartment, I took 2 Percocet and proceeded to cook dinner. Apple butter and cider pork chops, apple cider rice with pecans and some spicy sauteed spinach. It felt good to eat decent food with flavor again. Next, I went to sleep with a ton of pillows.
Yes, I was ready to leave but I wanted to stay with "G." The doctors said he would be ready to leave Wednesday if he kept doing so well. Since sleeping in chairs would have been impossible for me, I left.
The car ride home was painful. I felt every bump. If you find yourself in this position, I suggest padding your car with pillows.
"G's" parents brought me home. Along the way, we stopped at Kroger so I could fill my prescription and get the other things the doctors told me to buy. I also bought food to make dinner.
Upon entering the apartment, I took 2 Percocet and proceeded to cook dinner. Apple butter and cider pork chops, apple cider rice with pecans and some spicy sauteed spinach. It felt good to eat decent food with flavor again. Next, I went to sleep with a ton of pillows.
Sunday, January 20
Wow! I was up for my morning walk and ran into one of my surgeons making his rounds. He told me I could go home that day if I wanted because I was doing so well! He told me that most people couldn't get out of bed so quickly and this was what was helping me to recover so quickly. I never imagined that my inability to be still for more than five minutes would pay off so well. He removed my IV line (not used since my last round of antibiotics Saturday morning) and agreed to get rid of the heart monitor that had to go everywhere I went. I asked about the pain ball, but he suggested that I leave it in for another day. 2 out of 3 wasn't bad! I was losing more wires and tubes and that made my day.
I decided to stay another night because I still needed help getting in and out of bed and also had visitors coming from Columbus that evening. I also wanted to be able to check on "G" whenever I could :)
I spent most of the day walking around the hospital. My pain level was maybe a 3 and I was ready for real food.
I decided to stay another night because I still needed help getting in and out of bed and also had visitors coming from Columbus that evening. I also wanted to be able to check on "G" whenever I could :)
I spent most of the day walking around the hospital. My pain level was maybe a 3 and I was ready for real food.
January 19: The day after
I already explained the morphine scare, but I should probably finish up my Saturday in the hospital.
After walking around for about 20 minutes, I went back to my room. I was still not taking any pain meds, so I was a little ucomfortable. The hardest thing was to get in and out of bed. That was incredibly painful! I finally figured out sometime Sunday morning that it was easier to climb in on my knees near my pillows, then roll slowly onto my back and scoot up as high as I could. Until I figured that out, I pretty much needed help getting in and out of bed.
The day was long. My catheter was removed and that was like heaven, being able to pee by myself! They kept trying to feed me a liquid diet (jello, broth and other nasty stuff) but I really had no appetite. I started a soft diet at lunch (flavorless mashed potatoes, carrots, something trying to pass for pudding, and meatloaf). I ate a little of everything but the meatloaf and it made me queasy. Dinner would be back to soup broth!
I have to admit, this was the most painful day that I spent in the hospital. A great deal of the pain came from being in an uncomfortable hsopital bed with bad pillows. I started taking Percocet that evening and that helped.
The 1st, 2nd and 3rd shift nurses were great. My 3rd shift nurse from Friday night was replaced by a wonderful woman named Odessa and I had no more issues with nurses for the rest of my stay.
"G" would be brought up to this floor today after spending 24 hours in ICU. According to everyone else, whenever they came in our rooms, the first question asked was how was the other one doing. I would be greatly relieved to see for myself that he was doing as well as everyone kept telling me. Surprisingly, he ended up in the room next to mine and we got to visit with each other when we could. It felt really good to see that he was doing well. It made any thing I went through worth it just to see him doing better than he had in months. Seeing him on dialysis 3x week was not only hard on him, but also on me. It tore me up emotionally to think that he would have to do this for the rest of his life.
A little note for Branden in case he is reading: thanks for taking care of your "other mother." I couldn't have done it without you there :)
After walking around for about 20 minutes, I went back to my room. I was still not taking any pain meds, so I was a little ucomfortable. The hardest thing was to get in and out of bed. That was incredibly painful! I finally figured out sometime Sunday morning that it was easier to climb in on my knees near my pillows, then roll slowly onto my back and scoot up as high as I could. Until I figured that out, I pretty much needed help getting in and out of bed.
The day was long. My catheter was removed and that was like heaven, being able to pee by myself! They kept trying to feed me a liquid diet (jello, broth and other nasty stuff) but I really had no appetite. I started a soft diet at lunch (flavorless mashed potatoes, carrots, something trying to pass for pudding, and meatloaf). I ate a little of everything but the meatloaf and it made me queasy. Dinner would be back to soup broth!
I have to admit, this was the most painful day that I spent in the hospital. A great deal of the pain came from being in an uncomfortable hsopital bed with bad pillows. I started taking Percocet that evening and that helped.
The 1st, 2nd and 3rd shift nurses were great. My 3rd shift nurse from Friday night was replaced by a wonderful woman named Odessa and I had no more issues with nurses for the rest of my stay.
"G" would be brought up to this floor today after spending 24 hours in ICU. According to everyone else, whenever they came in our rooms, the first question asked was how was the other one doing. I would be greatly relieved to see for myself that he was doing as well as everyone kept telling me. Surprisingly, he ended up in the room next to mine and we got to visit with each other when we could. It felt really good to see that he was doing well. It made any thing I went through worth it just to see him doing better than he had in months. Seeing him on dialysis 3x week was not only hard on him, but also on me. It tore me up emotionally to think that he would have to do this for the rest of his life.
A little note for Branden in case he is reading: thanks for taking care of your "other mother." I couldn't have done it without you there :)
Morphine Scare!
When this happened I was in my room at the hospital. I was feeling pretty good at the time and they had explained that the morphine pump would only release so much each time I hit it. It also had a lock on it and I couldn't dose myself repeatedly. Cool, I could control my pain without calling for a nurse!
I remember deciding to take a nap as I felt exhausted (this is probably a normal feeling after major surgery, lol). I thought that I would hit the morphine pump one time so I would be able to sleep without pain. I drifted off to sleep.
I woke up several hours later and there were what seemed like 50 people standing in my room staring at me! This freaked me out. I asked what was going on and apparently when I went to sleep, it was a very deep sleep. Almost coma-like. The nurse had trouble waking me and I got really pale and my lips turned white. I was more freaked out after they told me all of that. I just thought I took a nap. Anyway, it turns out that I am allergic to morphine and this was how my body reacted. It slowed my heart rate down a lot.
I remember calling the nurse after I hit the morphine pump because I felt like I was having a hot flash and was dizzy. My doctor had the morphine removed immediately, but enough had gotten into my system for me to have a bad reaction. Because of this reaction, I had to wear a heart monitor the entire time I was in the hospital. They were just being cautious but I assure you, I have no heart problems and was tested thoroughly before surgery. What a way to find out you are allergic to something!
I was afraid to sleep that night and "G's" son spent the night in my room to watch me because I refused to be left alone. I was terrified and refused any more pain meds until the next evening.
Mu nurse that evening (she will remain nameless) was not the greatest. My catheter was not draining properly and it leaked across my leg a couple times that night. When I called for her to check it, both times, she said it was fine and not leaking. Can you please explain why I felt pee trickling across my leg? I called for a nurse at about 3AM to check it again because I felt like I really had to pee. If you have ever had a catheter, then you know that you don't even realize when you are peeing and should not feel like you need to go. She answered my call, said ok and no one ever came. By this time, I was very angry and would have climbed out of my bed and killed her if I was able. At shift change, my new nurse checked the catheter, realized it wasn't draining and fixed it.
I saw one of my surgeons later that morning and he agreed to remove my catheter. What a relief!
I was also up and walking the halls at shift change because I could not stand to stay in bed any longer.
More about the day after later.
I remember deciding to take a nap as I felt exhausted (this is probably a normal feeling after major surgery, lol). I thought that I would hit the morphine pump one time so I would be able to sleep without pain. I drifted off to sleep.
I woke up several hours later and there were what seemed like 50 people standing in my room staring at me! This freaked me out. I asked what was going on and apparently when I went to sleep, it was a very deep sleep. Almost coma-like. The nurse had trouble waking me and I got really pale and my lips turned white. I was more freaked out after they told me all of that. I just thought I took a nap. Anyway, it turns out that I am allergic to morphine and this was how my body reacted. It slowed my heart rate down a lot.
I remember calling the nurse after I hit the morphine pump because I felt like I was having a hot flash and was dizzy. My doctor had the morphine removed immediately, but enough had gotten into my system for me to have a bad reaction. Because of this reaction, I had to wear a heart monitor the entire time I was in the hospital. They were just being cautious but I assure you, I have no heart problems and was tested thoroughly before surgery. What a way to find out you are allergic to something!
I was afraid to sleep that night and "G's" son spent the night in my room to watch me because I refused to be left alone. I was terrified and refused any more pain meds until the next evening.
Mu nurse that evening (she will remain nameless) was not the greatest. My catheter was not draining properly and it leaked across my leg a couple times that night. When I called for her to check it, both times, she said it was fine and not leaking. Can you please explain why I felt pee trickling across my leg? I called for a nurse at about 3AM to check it again because I felt like I really had to pee. If you have ever had a catheter, then you know that you don't even realize when you are peeing and should not feel like you need to go. She answered my call, said ok and no one ever came. By this time, I was very angry and would have climbed out of my bed and killed her if I was able. At shift change, my new nurse checked the catheter, realized it wasn't draining and fixed it.
I saw one of my surgeons later that morning and he agreed to remove my catheter. What a relief!
I was also up and walking the halls at shift change because I could not stand to stay in bed any longer.
More about the day after later.
Day of Surgery, January 18, 2007
I would like to start by saying that I am not a morning person and 4:30 is an ungodly hour to have to drag oneself out of bed. I admire those of you who do this on a regular basis. I work evenings in a restaurant so I am more of a night person.
I feel like I haven't slept all night but I drag myself out of bed and prepare to go the hospital. I planned on wearing pj's so this wasn't too difficult.
Upon arriving at the hospital, "G" and I check in for surgery. Then we go sit in the short-stay surgery waiting area until we are called back for pre-op procedures. I was called back first and the last I remember is having my IV inserted.
I would love to share memories of gong to the operating room, but I have none. The next thing I remember, after the IV, is waking up in recovery and talking to Paul (he monitored my vitals while in recovery and was very good to me). I was a little stoned from anesthesia but I remember that my pulse/ox was 100 and Paul telling me that it had remained at that level, I must not be a smoker. He left me on oxygen briefly but felt that I would be fine with it removed. Yeah, one less tube in me!
I think they explained my "pain ball" to me again while in recovery. It is exactly that, a ball filled with local anesthetic attached by small catheters to the stomach. It takes about 6 hours to kick in and lasts for 3 days. It basically releases local anasthetic to the areas that were cut inside of you. Next, they shot some morphine into my IV for the pain and explained how to use my morphine pump. I thought this would be the greatest thing ever but I was wrong, as I will explain in my next post.
For some idea of the time my half of the surgery took, here is a little time frame:
My operation started at 8:13AM, was taken to recovery at 12:27PM and woke up around 1:30Pm. I was taken to my room by 3:00PM.
Next post: My morphine scare!
I feel like I haven't slept all night but I drag myself out of bed and prepare to go the hospital. I planned on wearing pj's so this wasn't too difficult.
Upon arriving at the hospital, "G" and I check in for surgery. Then we go sit in the short-stay surgery waiting area until we are called back for pre-op procedures. I was called back first and the last I remember is having my IV inserted.
I would love to share memories of gong to the operating room, but I have none. The next thing I remember, after the IV, is waking up in recovery and talking to Paul (he monitored my vitals while in recovery and was very good to me). I was a little stoned from anesthesia but I remember that my pulse/ox was 100 and Paul telling me that it had remained at that level, I must not be a smoker. He left me on oxygen briefly but felt that I would be fine with it removed. Yeah, one less tube in me!
I think they explained my "pain ball" to me again while in recovery. It is exactly that, a ball filled with local anesthetic attached by small catheters to the stomach. It takes about 6 hours to kick in and lasts for 3 days. It basically releases local anasthetic to the areas that were cut inside of you. Next, they shot some morphine into my IV for the pain and explained how to use my morphine pump. I thought this would be the greatest thing ever but I was wrong, as I will explain in my next post.
For some idea of the time my half of the surgery took, here is a little time frame:
My operation started at 8:13AM, was taken to recovery at 12:27PM and woke up around 1:30Pm. I was taken to my room by 3:00PM.
Next post: My morphine scare!
January 17, 2008: The Night Before
I am trying to catch this up in short segments so there isn't one huge post to read to get acquainted with my story. So moving right along, it is now the night before surgery.
I am thinking "What is wrong with me? I should be scared." Maybe I am a little bit crazy, but I still am calm.
We are spending the night at the Medical Center Inn and have some instructions for the night before surgery. No eating or drinking after midnight, wash with an antibacterial soap, and (oh boy) use an enema. I was more terrified of the enema than anything else. Not going to give you details of that but I hope I never have to do it again!
After we did all of this, we attempted to sleep. Last I remember looking at the clock it was 11:56PM. We were planning on getting up at 4:30 to get ready. We had to be at the hospital at 6AM.
I am thinking "What is wrong with me? I should be scared." Maybe I am a little bit crazy, but I still am calm.
We are spending the night at the Medical Center Inn and have some instructions for the night before surgery. No eating or drinking after midnight, wash with an antibacterial soap, and (oh boy) use an enema. I was more terrified of the enema than anything else. Not going to give you details of that but I hope I never have to do it again!
After we did all of this, we attempted to sleep. Last I remember looking at the clock it was 11:56PM. We were planning on getting up at 4:30 to get ready. We had to be at the hospital at 6AM.
Should I Be Scared Yet?
This is really weird, but I never really got nervous before the surgery. I was even very calm the morning of surgery, during pre-op procedures before going to sleep. At the beginning, I just figured that I would get nervous as we got closer to transplant. For whatever reason, I never freaked out and remained calm about everything. Maybe this was from studying the transplant process for months beforehand or just part of my relatively calm nature. Who knows? But I am thankful to the powers that be that I was calm for everything.
Testing
I began donor evaluation testing in September. Testing lasted all the way up to Jan. 16th (2 days before surgery) because they do a final crossmatch. I had numerous blood tests, including but not limited to, HIV, Epstein-Barr, hepatitis and herpes varietals. You are tested very thoroughly because they want the donor to be in excellent health before allowing them to donate an organ. I did several urine tests, a couple of renal CT scans, chest x ray, mammogram, complete gynecological exam, and an EKG. Tissue typing and cross matching were done twice. I also had to monitor my blood pressure. The testing felt like it took forever but we were told I was a compatible donor early in November and received a definite surgery date on December 26, 2007.
At times, I felt like I had no patience waiting for test results but in the end it was worth the wait. I found out that I am very healthy and could make a huge difference in "G's" quality of life.
But, I was wondering when I was going to start getting nervous about surgery.
At times, I felt like I had no patience waiting for test results but in the end it was worth the wait. I found out that I am very healthy and could make a huge difference in "G's" quality of life.
But, I was wondering when I was going to start getting nervous about surgery.
Friday, January 25, 2008
From The Beginning
I am one week post-op and have decided to start at the beginning of my story.
On May 23, 2007, someone very dear to me was diagnosed with end stage renal failure. He suffers from focal segmental glomerusclerosis (fsgs) and had virtually no symptoms up to that point. Since diagnosis, we have found out that it actually took about 10 years for this disease to shut down his kidneys. Options for treatment when you reach end stage renal failure are a lifetime of dialysis or transplant.
This may sound crazy, but I just felt like I was supposed to donate. I am not the most religious of people, but do believe in some kind of higher power, so this feeling really had me thinking more about my faith. I told "G" I wanted to start testing as soon as possible. I really don't know what he thought about it and didn't ask. I am the type of person that just takes control of the situation and dives right in.
Many of you are probably thinking "is this woman crazy?" Why would you do this for someone who is not your own child or close family member? I don't think I'm crazy. Believe me, I was asked a lot of questions about this decision during the testing process just to make sure that I wasn't insane. I just "knew" I was supposed to do this.
On May 23, 2007, someone very dear to me was diagnosed with end stage renal failure. He suffers from focal segmental glomerusclerosis (fsgs) and had virtually no symptoms up to that point. Since diagnosis, we have found out that it actually took about 10 years for this disease to shut down his kidneys. Options for treatment when you reach end stage renal failure are a lifetime of dialysis or transplant.
This may sound crazy, but I just felt like I was supposed to donate. I am not the most religious of people, but do believe in some kind of higher power, so this feeling really had me thinking more about my faith. I told "G" I wanted to start testing as soon as possible. I really don't know what he thought about it and didn't ask. I am the type of person that just takes control of the situation and dives right in.
Many of you are probably thinking "is this woman crazy?" Why would you do this for someone who is not your own child or close family member? I don't think I'm crazy. Believe me, I was asked a lot of questions about this decision during the testing process just to make sure that I wasn't insane. I just "knew" I was supposed to do this.
The Learning Process
Although I told "G" to tell his doctors that I was ready for them to rip out my kidney at the exact moment he told me of his condition, I knew there would be lots of medical testing involved. His team of doctors wanted me to wait until he was on dialysis for 3 months and to wait for Medicare to kick in so I wouldn't be hit with outrageous medical bills. I decided that since there was nothing I could do to speed up the process, I would learn all that I could about end stage renal failure. The links I have listed on this site were a great help to me. I also spent endless hours on the internet looking for any information I could find. My local library had one book related to kidney failure. This was a bit of a surprise but I checked it out and read it a few times.
FSGS is actually pretty common although little is known about what causes it. Anyone who follows the NBA may be aware that this is the same disease Alonzo Mourning, of the Miami Heat, was diagnosed with prior to his kidney transplant.
I am not going to list every piece of info I read here, but I will answer questions.
What I am trying to stress in this post is that this is not a decision to be taken lightly and you should educate yourself about kidney failure and the options available. Not everyone should donate an organ and you can't really change your mind after having one removed, so be 100% certain of your decision.
If you have to wait for donor evaluation to begin, this is the perfect time to begin learning. Talk to doctors, transplant recipients, live donors and family. Living donors online has a great message board and you can read the experiences of many who have undergone the donation process.
FSGS is actually pretty common although little is known about what causes it. Anyone who follows the NBA may be aware that this is the same disease Alonzo Mourning, of the Miami Heat, was diagnosed with prior to his kidney transplant.
I am not going to list every piece of info I read here, but I will answer questions.
What I am trying to stress in this post is that this is not a decision to be taken lightly and you should educate yourself about kidney failure and the options available. Not everyone should donate an organ and you can't really change your mind after having one removed, so be 100% certain of your decision.
If you have to wait for donor evaluation to begin, this is the perfect time to begin learning. Talk to doctors, transplant recipients, live donors and family. Living donors online has a great message board and you can read the experiences of many who have undergone the donation process.
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