I have an appointment to have some more blood drawn at Christ. A lady at work, a wonderful, kind lady, has made an appointment to see if we are compatible. She was told over the phone that if we aren't a perfect match then there are lots of medications that I could take to prevent rejection. I'm so excited!
Also, Jason got a call. The coordinator wants to talk to him about the next step in transplant. He's going to try to get an appointment on Monday or Tuesday. I think that we have to have our blood drawn within 24 hours of each other. I'm nervous about him trying to donate. I know that we'll both need help after the surgery. My parents said they'd take the girls for us while we recover. And I'm SURE there are tons of people who would come sit with the two of us. But, I worry. Of course I do...I've always been a worrier.
Bye-Bye Social Worker
I got a letter from my social worker today. It said that "it would be in both of our best interest" if she no longer handled my case. You think! I tried to request the other lady for this trip anyway. Not sure why I was stuck with this one again. Thank goodness!
Lost
I think I lost my phone. I can't find it anywhere. I feel so lost. Most of my doctors have my cell number. Hope they'll try my home number, too.
Blood Pressure
My pressure has been crazy high, so my doctors increased one of my meds. When I came in today it was much better. And it's only been one day of the increased meds. Yeah!
Thursday, December 2, 2010
Tuesday, November 30, 2010
Glad To Be Back
It was nice to get out of town. Stressful, but at least I got to go on a little vacation. Saturday afternoon was the best. Jason, Alli, Anna and I got to go down the mountain by ourselves to have lunch and do the touristy stuff. We bought the girls each a magnet and Alli got a piece of rock candy. She was a mess...but she had a great time.
Missed an Extra Day
Since I have a social worker who can't do her job correctly I had three days off dialysis. Normally the most I skip is two days over a weekend. I was afraid that I would feel terrible by today. But I'm okay. It's hard to explain, but I don't feel refreshed and amazing, but I'm not sure I ever do! I'm tired and a little worn down, but not terrible or sick.
Back to My Arm
I was running on my catheter for two weeks. Now I'm back on my arm. The nurse numbed me first, but I think she stuck me wrong cause one of the needles hurt like hell going in. I'm glad I was on my catheter in Gatlinburg. The don't offer numbing at that unit. Yowzers!
Good News!
I got a call from Christ Hospital yesterday. They need me to come in for another blood draw for a donor match. It seems that one of my potential donors has stepped up and is moving along with the process. This is the test that has to be done within 24 hours of the other person's test. They are only there until 3:30, so it'll be tough not to miss school. But I'm sure I'll be able to find someone to cover my last class so I can leave a bit early. I'm waiting for a return call to set up the appointment. Yeah!
Missed an Extra Day
Since I have a social worker who can't do her job correctly I had three days off dialysis. Normally the most I skip is two days over a weekend. I was afraid that I would feel terrible by today. But I'm okay. It's hard to explain, but I don't feel refreshed and amazing, but I'm not sure I ever do! I'm tired and a little worn down, but not terrible or sick.
Back to My Arm
I was running on my catheter for two weeks. Now I'm back on my arm. The nurse numbed me first, but I think she stuck me wrong cause one of the needles hurt like hell going in. I'm glad I was on my catheter in Gatlinburg. The don't offer numbing at that unit. Yowzers!
Good News!
I got a call from Christ Hospital yesterday. They need me to come in for another blood draw for a donor match. It seems that one of my potential donors has stepped up and is moving along with the process. This is the test that has to be done within 24 hours of the other person's test. They are only there until 3:30, so it'll be tough not to miss school. But I'm sure I'll be able to find someone to cover my last class so I can leave a bit early. I'm waiting for a return call to set up the appointment. Yeah!
Friday, November 26, 2010
Did I Mention...
That my social worker is an idiot? Yes, the same lady who screwed up Florida. She's an idiot. She called when we were already in Tennessee to tell me that I'm dialyzing on Friday instead of Saturday. No big deal except I'm going to skip 3 days instead of 2 days. I'm not sure how it feels yo skip 3 days. She told me to watch my fluid intake. Hope I feel okay on Monday.
Thanksgiving
It's been nice so far. Everyone's really excited to spend time with Anna. She was great in the car, too. She blew up about a half hour before we made it to the cabin. I probably would have, too, if I was strapped into a car seat for 6 hours.
The cabin is nice. Perfect size for the 13 of us. We had a great Thanksgiving dinner. It was all-you-can-eat served family style. There was turkey, prime rib, pork chops, green beans, mashed potatoes, gravy, and stuffing. Alli loved the baked apples and kept saying it was the best meal she's ever had! I'm so glad.
Dialysis
I'm here now. We only got a little lost, but we made it on time. This unit is nice. I have a touch-screen tv. It's like one of those game systems on the end of a bar. I'm typing this on the tv while listening to 80's music on satellite radio. There are game that I plan on playing, too. The chairs are heated massage chairs. Amazing!
There are only three or four other people here. They are alot more normal than the people I usually run with. The nurses keep coming over because my blood pressure is running high. They're nice. I guess if I have to run then this is a nice place to do it.
I'm Thankful
So much has gone wrong lately, but I'm trying to think of all the things I'm thankful for. Here's a short list:
Jason, Alli and Anna
Mom, Dad and Brian
Anna's doctors and the Good Sam NICU
Kidney doctors, my OB, and the dialysis nurses
My co-workers and friends
and recently, Cap'n Crunch
Happy Thanksgiving!
Thanksgiving
It's been nice so far. Everyone's really excited to spend time with Anna. She was great in the car, too. She blew up about a half hour before we made it to the cabin. I probably would have, too, if I was strapped into a car seat for 6 hours.
The cabin is nice. Perfect size for the 13 of us. We had a great Thanksgiving dinner. It was all-you-can-eat served family style. There was turkey, prime rib, pork chops, green beans, mashed potatoes, gravy, and stuffing. Alli loved the baked apples and kept saying it was the best meal she's ever had! I'm so glad.
Dialysis
I'm here now. We only got a little lost, but we made it on time. This unit is nice. I have a touch-screen tv. It's like one of those game systems on the end of a bar. I'm typing this on the tv while listening to 80's music on satellite radio. There are game that I plan on playing, too. The chairs are heated massage chairs. Amazing!
There are only three or four other people here. They are alot more normal than the people I usually run with. The nurses keep coming over because my blood pressure is running high. They're nice. I guess if I have to run then this is a nice place to do it.
I'm Thankful
So much has gone wrong lately, but I'm trying to think of all the things I'm thankful for. Here's a short list:
Jason, Alli and Anna
Mom, Dad and Brian
Anna's doctors and the Good Sam NICU
Kidney doctors, my OB, and the dialysis nurses
My co-workers and friends
and recently, Cap'n Crunch
Happy Thanksgiving!
Wednesday, November 24, 2010
A Real Vacation
On Monday, Brenda gave me the address of the place I'm going to dialyize in Gatlinburg. Today's the day we leave. I still haven't convinced myself that we're really going. I still have "Florida" on my mind. But now that I'm not pregnant my options are a little different. If I go and don't get dialyzed then I'll probably feel kind of crappy, but I won't die. I could always ask them to take off an extra kilo today and not be too worried about it all.
But, I'm assuming everything will be okay when we get there. I'm scheduled for 11:45 am on Saturday. So, I'll miss the afternoon fun, but be back in time for dinner. It should all be fine.
Treasurer Meeting
I had to meet with the District's treasurer yesterday to discuss my pay. I was a nervous wreck. I didn't sleep the night before and had a terrible stomach ache all morning until I saw her. And there was no reason to be upset. She just showed me what my pay would be for each paycheck for the rest of the year. And my insurance is fine...no need to worry. I accumulate 1 1/4 sick days a month, so I will only need to take 2 3/4 unpaid days a month for dialysis. Could be alot worse. She said that if I get a little bought of something and need to take a couple of days off then I'll need to write a letter to the School Board requesting unpaid time. But let's keep our fingers crossed that that won't happen!
But, I'm assuming everything will be okay when we get there. I'm scheduled for 11:45 am on Saturday. So, I'll miss the afternoon fun, but be back in time for dinner. It should all be fine.
Treasurer Meeting
I had to meet with the District's treasurer yesterday to discuss my pay. I was a nervous wreck. I didn't sleep the night before and had a terrible stomach ache all morning until I saw her. And there was no reason to be upset. She just showed me what my pay would be for each paycheck for the rest of the year. And my insurance is fine...no need to worry. I accumulate 1 1/4 sick days a month, so I will only need to take 2 3/4 unpaid days a month for dialysis. Could be alot worse. She said that if I get a little bought of something and need to take a couple of days off then I'll need to write a letter to the School Board requesting unpaid time. But let's keep our fingers crossed that that won't happen!
Monday, November 22, 2010
Busy Days
Today and tomorrow are conference days at school. But I was told by my principal that I didn't have to worry about conferences this year, so I have lots of things planned.
I have dialysis this morning. It's on Monday, Wednesday and Saturday this week because of Thanksgiving being on a Thursday. So, I'm going to go home and change my clothes before conferences. I'll get there a little late, but no worry. Conferences are until 8:00.
Jason and I will leave a bit early because we are scheduled to meet Alli's teacher at 8:15. I'm excited to hear what she thinks about Alli's progress in school. Academically, she's great. I already know that. But I'd love to know how she's doing socially. I want to make sure she's sharing and getting along with others. Alli makes it sound like she's got lots of friends, but we'll see what the teacher says.
Tomorrow I have to pack for Gatlinburg. I'll need to pack for myself and the girls. That needs to be done before I meet with the District Treasurer. She wants to talk about my pay. I'm nervous about that. Then I head to conferences, again, until 8:00.
Wednesday morning is dialysis again and then we'll leave for Gatlinburg when I get off. I hope the ride is relaxing, but I've never been in a car for 6 hours with a 5 year old and a newborn. Anna usually falls asleep in the car. Let's hope.
I'm looking forward to a relaxing week in Gatlinburg. I hope it will be, at least. There will be so many people there willing to take care of Anna and Alli if I need a nap or something. Jason thinks the grandparents will offer to watch the girls so we can go out one night. Not sure about that. I think they will want to go out with us. Fun.
I have dialysis this morning. It's on Monday, Wednesday and Saturday this week because of Thanksgiving being on a Thursday. So, I'm going to go home and change my clothes before conferences. I'll get there a little late, but no worry. Conferences are until 8:00.
Jason and I will leave a bit early because we are scheduled to meet Alli's teacher at 8:15. I'm excited to hear what she thinks about Alli's progress in school. Academically, she's great. I already know that. But I'd love to know how she's doing socially. I want to make sure she's sharing and getting along with others. Alli makes it sound like she's got lots of friends, but we'll see what the teacher says.
Tomorrow I have to pack for Gatlinburg. I'll need to pack for myself and the girls. That needs to be done before I meet with the District Treasurer. She wants to talk about my pay. I'm nervous about that. Then I head to conferences, again, until 8:00.
Wednesday morning is dialysis again and then we'll leave for Gatlinburg when I get off. I hope the ride is relaxing, but I've never been in a car for 6 hours with a 5 year old and a newborn. Anna usually falls asleep in the car. Let's hope.
I'm looking forward to a relaxing week in Gatlinburg. I hope it will be, at least. There will be so many people there willing to take care of Anna and Alli if I need a nap or something. Jason thinks the grandparents will offer to watch the girls so we can go out one night. Not sure about that. I think they will want to go out with us. Fun.
Saturday, November 20, 2010
Back to the Catheter
So, I guess we're using my catheter again. At least we have the past two treatments. My arm is a bruised mess and I think that they are afraid to use it. Fine with me. I can get on and off quicker. There's no need to stop the bleeding. They can just cap me off.
My blood pressure has been crazy high. It was 183/115 last night...crazy high! They are starting to think that I might be losing weight. Since they keep my dry weight the same (59 kgs) that would mean that I'm carrying less mass and more fluid. Extra fluid causes high blood pressure. [I can't imagine that I'm losing weight. I haven't been this light in my life. We had to go shopping for pants last weekend before I started back to school. I've never worn a 4 before.] I might need to increase my blood pressure medicine. I guess I'm sill taking a pretty small dose.
I'm a little frustrated with the whole transplant process. The coordinator called me the other day (after I called her more than once). She told me that there are two other tests I need to take care of. There was no mention of these tests four weeks ago when I had my blood taken. It's no big deal, but just annoying. The doctors here at dialysis suggested that I call her every day and bug her to get this process moving forward. One doctor wants me to get a fistula in my right arm and the other doctor thinks that crazy. Why should I do through that process again if I'm going to get a kidney? So, I told the coordinator this and she said "we'll see what we can do." We'll see.
Jason gave blood yesterday. He's O-. I knew he'd be an O. But I don't think they'll let him give me his kidney because of the girls. I know that my parents would help us. My mom even said the girls could live with them until we recover. But the question is, what if something happens to both of us? I think that's the main worry.
My blood pressure has been crazy high. It was 183/115 last night...crazy high! They are starting to think that I might be losing weight. Since they keep my dry weight the same (59 kgs) that would mean that I'm carrying less mass and more fluid. Extra fluid causes high blood pressure. [I can't imagine that I'm losing weight. I haven't been this light in my life. We had to go shopping for pants last weekend before I started back to school. I've never worn a 4 before.] I might need to increase my blood pressure medicine. I guess I'm sill taking a pretty small dose.
I'm a little frustrated with the whole transplant process. The coordinator called me the other day (after I called her more than once). She told me that there are two other tests I need to take care of. There was no mention of these tests four weeks ago when I had my blood taken. It's no big deal, but just annoying. The doctors here at dialysis suggested that I call her every day and bug her to get this process moving forward. One doctor wants me to get a fistula in my right arm and the other doctor thinks that crazy. Why should I do through that process again if I'm going to get a kidney? So, I told the coordinator this and she said "we'll see what we can do." We'll see.
Jason gave blood yesterday. He's O-. I knew he'd be an O. But I don't think they'll let him give me his kidney because of the girls. I know that my parents would help us. My mom even said the girls could live with them until we recover. But the question is, what if something happens to both of us? I think that's the main worry.
Thursday, November 18, 2010
Working While on Dialysis
I had to return to work right after dialysis on Tuesday. It was the first time, and it was okay. Of course, for the first time I had blood splattered on my shirt. Since I already had someone pass out on Monday, I had to find another shirt to wear before I went in. Note to self: Always pack a change of clothes!
I got to school with 3 minutes before my class started. It was raining, so the drive took longer than I expected. I parked BEHIND two other cars since there were no spots left and it was raining. And I think I was so rushed that I didn't have much time to think about how I was feeling. I made it through the day and when I got home I had a terrible headache and fell asleep. Sorry, Kelly W. I fell asleep while your daughter and Alli were playing in the house!
My headache continued through the night and I even woke up with a headache early Wednesday morning. But other than a headache, I'm okay.
More Bad News...
The doctor isn't happy about my arm. He's really leaning toward having me get another fistula in the other arm. Yesterday I noticed that my arm is bruised all the way up by my shoulder. That's not normal since it's nowhere near where they stick me. That means something is going wrong when I'm running. Great.
And I got an email from the District Treasurer who wasn't aware that I'm coming in late two days a week. She's concerned about "how we will do [my] pay going forward because of [my] sick leave balance." Super. This doesn't sound good to me, but I'm going to meet with her on Tuesday to see what's going on. My principal is still on my side and offered "whatever" I need. We'll see. It seems there is an exception to every rule, and I just think that I'm a serious exception.
Prayers
I sent an email to my students' parents introducing myself and explaining (briefly) my situation. I received several response telling me that they are praying for us. The best email came from a woman who said she's been praying since May for an expectant mother named Kelly who is in kidney failure. She said that her name just showed up in her prayer box at church. Small world...amazing God.
I got to school with 3 minutes before my class started. It was raining, so the drive took longer than I expected. I parked BEHIND two other cars since there were no spots left and it was raining. And I think I was so rushed that I didn't have much time to think about how I was feeling. I made it through the day and when I got home I had a terrible headache and fell asleep. Sorry, Kelly W. I fell asleep while your daughter and Alli were playing in the house!
My headache continued through the night and I even woke up with a headache early Wednesday morning. But other than a headache, I'm okay.
More Bad News...
The doctor isn't happy about my arm. He's really leaning toward having me get another fistula in the other arm. Yesterday I noticed that my arm is bruised all the way up by my shoulder. That's not normal since it's nowhere near where they stick me. That means something is going wrong when I'm running. Great.
And I got an email from the District Treasurer who wasn't aware that I'm coming in late two days a week. She's concerned about "how we will do [my] pay going forward because of [my] sick leave balance." Super. This doesn't sound good to me, but I'm going to meet with her on Tuesday to see what's going on. My principal is still on my side and offered "whatever" I need. We'll see. It seems there is an exception to every rule, and I just think that I'm a serious exception.
Prayers
I sent an email to my students' parents introducing myself and explaining (briefly) my situation. I received several response telling me that they are praying for us. The best email came from a woman who said she's been praying since May for an expectant mother named Kelly who is in kidney failure. She said that her name just showed up in her prayer box at church. Small world...amazing God.
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