Still doing pretty well here at home. I had more labs on Monday & this morning, and I see both my coordinator (Jennifer) and the doctor tomorrow. We are still trying to get my level of the immunosuppresant drug Prograf right. On today's labs, I was at 14, which is a little too high again. My creatanine was 1.5. That's up just a little bit (my last 2 readings were both 1.4) but it's a small increase, and Jennifer said she is almost 100% certain that it is from my Prograf being a little too high again. So, the creatanine is starting to level out, which is great.
I am doing a 24-hour urine collection right now... whatever you do, don't drink from the orange jug in my fridge... I have to turn the jug in tomorrow morning. I have to collect all my urine for 24 hours. It's super fun. They will be measuring my total amount of output to make sure I am peeing enough, and they will also be measuring the amount of protein I spill. Before the surgery, I was spilling ALOT of protein in my urine. On the sample I gave them this morning, Jennifer said there was just a tiny trace amount.
Ricky & Bruce (Rick's dad) put new rotors on my car today and they also changed the oil. Thanks guys!!! It's very useful to have handy menfolk around. I am good at many things, but other things, not so much. Rick is really handy- he can do almost any kind of home project. Tile, plumbing, minor electrical, carpentry, roofing, ALL our computer repairs (he does IT support at work)...you name it! He does most of the car repairs except for really major stuff. He doesn't like to think so, but he is very talented! He also helps me cook & clean! And, he does all the laundry! Sorry, ladies, he's taken!
Rick is planning a luau for my 30th b-day, which is looming right around the corner (Feb. 13). I am both looking forward to 30 and dreading it. We will see how I feel when the day comes... But the party is going to be great fun!
I also got a call from my grade-school gifted class teacher, Mary Summers! She had all three of us sisters over the years. Mrs. Summers is so awesome! She is probably the best teacher we ever had. It made me so happy to hear from her!
Thursday, January 29, 2009
Thursday, January 22, 2009
Recovery update
Yes, dear blogites, I'm still alive!
Everyone at Mayo told me to be ready for recovery to be a long process, and that it would be hard at times- they were right! I was in the hospital from Tuesday Jan. 6 thru Monday Jan. 12. The first couple days post-op were OK (I had alot of good drugs). But the rest of the time was rough. The medications I am on to suppress my immune system tend to wreck havoc on the digestive system. I was really sick most of the time I was in the hospital, and I had really bad nausea. This was no fun after an abdominal surgery... getting sick was very painful. They were giving me phenergran thru my I.V. which helped the nauseau, but it also knocked me out. The pain meds were also making me really sick. It was no fun.
The nauseau continued the first few days after I got home as well. When I saw the doctors again, I begged them to give me something- the wrote me a script, but they also told me they thought they knew why I had been so sick. One of the anti-rejection meds I will take for life is Prograf. The ideal level on Prograf in my blood is 7-11. My prograf levels were at 27, which they said was near toxic. I didn't feel like as much of a wimp! So, they told me to skip two doses, and then backed my dosage level way off. The next bloodwork a couple days later showed my Prograf at 16, and then a couple days later 13. I got a call today that my Wednesday bloodwork showed it at 3.5, which is too low. So, they increased my dose a little bit, and we will see what next week brings.
My liver counts were elevated on Monday's bloodwork, which concerned the doctors a little. But they also said that my body is still at the tail-end of detoxing from the Prograf. When Mayo called me today they said the Wednesday labs showed that they were coming back down, which is very good.
My creatanine levels have been steadily decreasing. Creatanine levels are a good basic indicator of kidney function- the lower the better. Before my surgery, mine was usually between 2.7-2.9. Within a couple days of surgery, mine was down to 1.7! I got as low as 1.4 before I was discharged. It was back up a little last week, but they think that was due to the mess with the Prograf. The bloodwork from Wednesday showed me at 1.4, which is actually in the 'normal' range.
I received only one unit of blood during surgery. About 4 days after the surgery my blood counts were fairly low again, so they gave me another transfusion of about 2.5 units. Why 2.5..? When they started the first unit, the nurse hooked everything up and left. A little while later I looked over at my IV pump and noticed something dripping off the bottom. The bag hadn't been hooked up properly to the tube and was leaking on the floor... it was really gross!! I had gotten almost halfway through the unit, but at this point I had developed a fever. This is a common side effect of Thymoglobulin, a strong immunosuppressant I had received 3 dosages of via IV in previous days. But, it can also be an indication of a reaction to the blood I was being given. So they had to stop the transfusion and wait for the fever to lift. They started me again the next day and I received two units. My hemoglobin and blood counts have been normal since I was discharged, which means I am no longer anemic!
I am scheduled to have a routine post-transplant biopsy of my new kidney on Feb. 2. This will be an out-patient procedure, and I will only have to be at the hospital for about 4-6 hours after the procedure for observation.
So, thus far the new kidney is working great. Mayo is still advising me to avoid public places as much as possible, because right now I am highly immunosuppressed. If I venture out, I have to wear a mask and not touch anything.
The next month or two will be spent adjusting my medication dosages. Right now, I am taking around 12 different meds a day, but this is the time when my medication levels will be the highest. Over the next year they will slowly decrease me off of many of them. I have been taking only Tylenol for the pain since Friday January 16. No narcotics! I still feel sore & tired from the surgery itself, but I already can feel the difference. I just feel better in general. Rick says my color looks so much better too. There are some weird side affects I am dealing with- some of the immunosuppressants cause sleep problems and I am having trouble falling asleep. I am also hallucinating while I am trying to fall asleep! But I am feeling a little better every day. I am getting around the house by myself now, and there's only a few things I can't do by myself- lift anything over 5 lbs, bend over if I drop something, and sleep on my right side. I might possibly be able to drive in the next 2-3 weeks, but that's not a definate.
I would also like to say that my husband has officially beat out everyone I know for Husband of the Year!!! He has been my tireless caregiver, and my fearless defender. I haven't had to stress or worry about anything. He has held me up (sometimes quite literally!) and I love him so much.
My parents & in-laws have been a huge help to us! They have been helping to transport & care for me, and also have been cooking meals and helping Rick keep the house clean. We are very lucky to have them!
My cousin Brenda is doing really well. She had alot of pain & nausea the first few days post-op; she has had a couple previous abdominal surgeries and she had alot of scar tissue they had to deattach. But she was discharged on Friday Jan. 9, and was able to fly back to Colorado on Friday January 16. I miss her very much and Rick and I are hoping to be able to make a trip out to Colorado to visiter her & her family in the next year or so.
Thank you so much for all the cards, letters, calls, care packages, and well-wishes. I hope to see you all again soon; take care & God bless!
Everyone at Mayo told me to be ready for recovery to be a long process, and that it would be hard at times- they were right! I was in the hospital from Tuesday Jan. 6 thru Monday Jan. 12. The first couple days post-op were OK (I had alot of good drugs). But the rest of the time was rough. The medications I am on to suppress my immune system tend to wreck havoc on the digestive system. I was really sick most of the time I was in the hospital, and I had really bad nausea. This was no fun after an abdominal surgery... getting sick was very painful. They were giving me phenergran thru my I.V. which helped the nauseau, but it also knocked me out. The pain meds were also making me really sick. It was no fun.
The nauseau continued the first few days after I got home as well. When I saw the doctors again, I begged them to give me something- the wrote me a script, but they also told me they thought they knew why I had been so sick. One of the anti-rejection meds I will take for life is Prograf. The ideal level on Prograf in my blood is 7-11. My prograf levels were at 27, which they said was near toxic. I didn't feel like as much of a wimp! So, they told me to skip two doses, and then backed my dosage level way off. The next bloodwork a couple days later showed my Prograf at 16, and then a couple days later 13. I got a call today that my Wednesday bloodwork showed it at 3.5, which is too low. So, they increased my dose a little bit, and we will see what next week brings.
My liver counts were elevated on Monday's bloodwork, which concerned the doctors a little. But they also said that my body is still at the tail-end of detoxing from the Prograf. When Mayo called me today they said the Wednesday labs showed that they were coming back down, which is very good.
My creatanine levels have been steadily decreasing. Creatanine levels are a good basic indicator of kidney function- the lower the better. Before my surgery, mine was usually between 2.7-2.9. Within a couple days of surgery, mine was down to 1.7! I got as low as 1.4 before I was discharged. It was back up a little last week, but they think that was due to the mess with the Prograf. The bloodwork from Wednesday showed me at 1.4, which is actually in the 'normal' range.
I received only one unit of blood during surgery. About 4 days after the surgery my blood counts were fairly low again, so they gave me another transfusion of about 2.5 units. Why 2.5..? When they started the first unit, the nurse hooked everything up and left. A little while later I looked over at my IV pump and noticed something dripping off the bottom. The bag hadn't been hooked up properly to the tube and was leaking on the floor... it was really gross!! I had gotten almost halfway through the unit, but at this point I had developed a fever. This is a common side effect of Thymoglobulin, a strong immunosuppressant I had received 3 dosages of via IV in previous days. But, it can also be an indication of a reaction to the blood I was being given. So they had to stop the transfusion and wait for the fever to lift. They started me again the next day and I received two units. My hemoglobin and blood counts have been normal since I was discharged, which means I am no longer anemic!
I am scheduled to have a routine post-transplant biopsy of my new kidney on Feb. 2. This will be an out-patient procedure, and I will only have to be at the hospital for about 4-6 hours after the procedure for observation.
So, thus far the new kidney is working great. Mayo is still advising me to avoid public places as much as possible, because right now I am highly immunosuppressed. If I venture out, I have to wear a mask and not touch anything.
The next month or two will be spent adjusting my medication dosages. Right now, I am taking around 12 different meds a day, but this is the time when my medication levels will be the highest. Over the next year they will slowly decrease me off of many of them. I have been taking only Tylenol for the pain since Friday January 16. No narcotics! I still feel sore & tired from the surgery itself, but I already can feel the difference. I just feel better in general. Rick says my color looks so much better too. There are some weird side affects I am dealing with- some of the immunosuppressants cause sleep problems and I am having trouble falling asleep. I am also hallucinating while I am trying to fall asleep! But I am feeling a little better every day. I am getting around the house by myself now, and there's only a few things I can't do by myself- lift anything over 5 lbs, bend over if I drop something, and sleep on my right side. I might possibly be able to drive in the next 2-3 weeks, but that's not a definate.
I would also like to say that my husband has officially beat out everyone I know for Husband of the Year!!! He has been my tireless caregiver, and my fearless defender. I haven't had to stress or worry about anything. He has held me up (sometimes quite literally!) and I love him so much.
My parents & in-laws have been a huge help to us! They have been helping to transport & care for me, and also have been cooking meals and helping Rick keep the house clean. We are very lucky to have them!
My cousin Brenda is doing really well. She had alot of pain & nausea the first few days post-op; she has had a couple previous abdominal surgeries and she had alot of scar tissue they had to deattach. But she was discharged on Friday Jan. 9, and was able to fly back to Colorado on Friday January 16. I miss her very much and Rick and I are hoping to be able to make a trip out to Colorado to visiter her & her family in the next year or so.
Thank you so much for all the cards, letters, calls, care packages, and well-wishes. I hope to see you all again soon; take care & God bless!
Wednesday, January 7, 2009
I Like Morphine
Greetings friends and family! This is Erin dictating her first update to baby sister Sarah. I tried to make the entry myself, but computer usage is blowing my mind right now.
I had a bit of a rough morning, but I'm feeling much better now. Early this morning, my nurse wanted to get me up and walking, but when I sat up for the first time, I became very dizzy and nauseated and nothing seemed to help. We tried pretty much everything, even a nausea medicine in my IV, but to no avail. After several hours, the doctors and nurses decided it was most likely the pain medication that I was on (diladin), so they switched me to a morphine drip. Since the medication switch, I am feeling much, much better and will probably be getting out of bed to take a walk very, very soon.
My new kidney is functioning really well. They actually had to take me off all blood pressure medications, because I have a normal blood pressure now. My creatanine level, which was around 2.7 pre-op, is now at 1.8 and dropping, which is fantastic. I am also peeing like a champ! I still have my catheter, but my urine output has been great! I no longer have blood in my urine.
I have developed what is hopefully a temporary case of diabetes. The doctors have said this is probably due mostly to the high dosages of steroids I am on combined with the many other stresses on my body. It's nothing major right now. The nurses are checking my sugar periodically, and I have received a few small doses of insulin via injection.
I actually was just able to take a walk (5:00pm). It felt good to be able to get up and move around. I was also able to take a sponge bath, which was great.
I was able to see Brenda briefly today. She was up and moving around for awhile and came down to visit my room. She is doing well but had a pretty tough time in recovery right after the surgery. She was having a lot of pain due to scar tissues from some previous surgeries. She has had some nausea problems throughout the day, but it seems to be getting better now. I stopped by Brenda's room on my walk, but she was sound asleep, so I wanted to let her rest. I am still overwhelmed she was willing to go through all of this for me and for our family. I am planning on getting up and taking at least one more walk tonight. I am hoping that we both gets a good night's sleep tonight.
Today is my Dad's birthday, so we have birthday cake waiting in Brenda's room. It is also Brenda's Mom & Dad (Aunt Peggy & Uncle Dave's) 54th Wedding Anniversary.
I would love to see everyone, but since I am still not feeling very well I probably won't be up to having any visitors until at least late Thursday or maybe Friday. Feel free to send me an e-mail or give me a call to see how I am feeling. I am in Room 310 at the Mayo Clinic. Feel free to give my cell phone number a call if you would like.
More updates to come...
I had a bit of a rough morning, but I'm feeling much better now. Early this morning, my nurse wanted to get me up and walking, but when I sat up for the first time, I became very dizzy and nauseated and nothing seemed to help. We tried pretty much everything, even a nausea medicine in my IV, but to no avail. After several hours, the doctors and nurses decided it was most likely the pain medication that I was on (diladin), so they switched me to a morphine drip. Since the medication switch, I am feeling much, much better and will probably be getting out of bed to take a walk very, very soon.
My new kidney is functioning really well. They actually had to take me off all blood pressure medications, because I have a normal blood pressure now. My creatanine level, which was around 2.7 pre-op, is now at 1.8 and dropping, which is fantastic. I am also peeing like a champ! I still have my catheter, but my urine output has been great! I no longer have blood in my urine.
I have developed what is hopefully a temporary case of diabetes. The doctors have said this is probably due mostly to the high dosages of steroids I am on combined with the many other stresses on my body. It's nothing major right now. The nurses are checking my sugar periodically, and I have received a few small doses of insulin via injection.
I actually was just able to take a walk (5:00pm). It felt good to be able to get up and move around. I was also able to take a sponge bath, which was great.
I was able to see Brenda briefly today. She was up and moving around for awhile and came down to visit my room. She is doing well but had a pretty tough time in recovery right after the surgery. She was having a lot of pain due to scar tissues from some previous surgeries. She has had some nausea problems throughout the day, but it seems to be getting better now. I stopped by Brenda's room on my walk, but she was sound asleep, so I wanted to let her rest. I am still overwhelmed she was willing to go through all of this for me and for our family. I am planning on getting up and taking at least one more walk tonight. I am hoping that we both gets a good night's sleep tonight.
Today is my Dad's birthday, so we have birthday cake waiting in Brenda's room. It is also Brenda's Mom & Dad (Aunt Peggy & Uncle Dave's) 54th Wedding Anniversary.
I would love to see everyone, but since I am still not feeling very well I probably won't be up to having any visitors until at least late Thursday or maybe Friday. Feel free to send me an e-mail or give me a call to see how I am feeling. I am in Room 310 at the Mayo Clinic. Feel free to give my cell phone number a call if you would like.
More updates to come...
Tuesday, January 6, 2009
Erin's Surgery Update #1
Hello All!
This is Erin's baby sister Sarah reporting in for Surgery Update #1.
Erin's donor, Brenda, went in for surgery at 8:15am. We just received word at 10:45am that Brenda was closed up, moved to recovery, and in great shape. They were able to do the surgery laparoscopically, which is the best possible scenario for Brenda. She will be discharged on Thursday, if all healing goes as planned.
Erin was taken back for prep at 10:15am. Just two seconds ago Rick was taken back to give Erin kisses before being put under and taken into surgery.
So far, everything is going great. We are all waiting here at the Mayo Surgery Waiting area. I will be sending an e-mail update once Erin gets out of surgery (in about 2 to 4 hours) with further information on sending well-wishes, visitors, and Erin's recovery.
Much love to everyone,
Sarah M. Gillooly
This is Erin's baby sister Sarah reporting in for Surgery Update #1.
Erin's donor, Brenda, went in for surgery at 8:15am. We just received word at 10:45am that Brenda was closed up, moved to recovery, and in great shape. They were able to do the surgery laparoscopically, which is the best possible scenario for Brenda. She will be discharged on Thursday, if all healing goes as planned.
Erin was taken back for prep at 10:15am. Just two seconds ago Rick was taken back to give Erin kisses before being put under and taken into surgery.
So far, everything is going great. We are all waiting here at the Mayo Surgery Waiting area. I will be sending an e-mail update once Erin gets out of surgery (in about 2 to 4 hours) with further information on sending well-wishes, visitors, and Erin's recovery.
Much love to everyone,
Sarah M. Gillooly
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Rick & Erin at the Biltmore House, Christmas '09