This week was a long week for me. I really pushed myself on a long Thanksgiving day, and even cooked a turkey dinner for 7. For my family, 7 is nothing. There are usually 20 just with immediate family, so 7 is nothing. I promised to make it low key and just do the basic turkey, stuffing, gravy, potatoes and green beans. But by the time dinner was served, I was so tired I was nauseous. Donovan had run a turkey trot and then there was brunch with the in-laws. The day was very busy. Our real family thanksgiving was on Friday, so I was suppose to just rest after dinner, but my brother from New York was in town and wanted to visit and came over with his 3 kids and grandson a day early. They stayed until 1am and by the next day I was really sick.
I was a no show for my traditional early morning shopping trip with my mom and sister and slept until dinnertime. I got enough energy to get to my sisters for dinner, and then came back home and went to bed. I had almost the same day Saturday. There were many family events planned while my brother and his family were in town...most not attended by me. I again made it to dinner and to say goodbye. They left very early this morning.
I spent early this week resting up for this holiday weekend. Needless to say I ended up very disappointed. I feel like I disappointed my brothers family and missed most of the fun. I was really hopeful that I would be great by Thanksgiving. I am actually a little worse.
I have had headaches all week. If that wasn't bad enough, today I tried to make up a little holiday shopping. At the first store, I seemed to have pulled something in my stomach. I was in so much pain I struggled to get back to the car. I drove home trying not to cry. My mom was with me. She put Donovan in the car and helped load everything from the cart, but the trip was very disappointing. Chris is off playing hockey for the first time. I am sad that I will have to tell him the bad news when he gets home. I am sure like he feels like he can't leave for a second.
Tomorrow I am off to see my surgeon at UCSF early in the morning. I will have a lot to ask about...the headaches, and now the stomach. For tonight, I am just resting so more laying around.
I will end with a small "shoutout" to my cousin. She had an eventful weekend. She came home to find a burglar with his car packed with her flat panel television. She is a single mom and blocked the burglar in with her car, her two daughters with her, and called the cops. Us girls may look sweet and innocent, but we are tough as nails. Looks can be very deceiving. Congrats Suzanne. We are so glad you, your girls, and all your property are all ok and the bad guy is off the streets.
Catherine
Sunday, November 30, 2008
Tuesday, November 18, 2008
a late post
Sorry for not posting for a while. It was hard with Chris gone, and since he has been back, I have just been trying to catch up. The last week has been very difficult for me. Not because I am really sick, or in tremendous pain, but because I am not normal yet. I don't have the energy to do all the housework yet, or handle everything life gives us each day. But I feel like I should be better by now. I look around and I see a million things to do. But, I still have a lot of limitations. I just hope that down the road I can be back to the way I was before I got sick...or even better.
Today I went to my month check up. I counted my month as 4 weeks post surgery. But, the doctors considered the 16th of this month as my month post surgery. I am losing one medication, Fluconazole or Diflucan. That is a pill I take once a week. Everything else is staying the same, but even that one pill is a start. I also was given permission to drive a little bit and take a bath. I wasn't suppose to be allowed to do these things for two more weeks. Amazing how little advancements are such victories.
The time Chris was gone was very hard on me. I rely on him so much. He really is my rock. My mother was great. She was constantly here making sure I was ok and taking care of Donovan. My in-laws even took Donovan for 24 hours. I can't tell you how empty my house is without my boys. It is just so hard to take care of a 3 year old when you can't pick him up. Its very difficult to convince yourself you are a good mother when you can't be alone with your child all day.
I had my usual tests today at UCSF. I didn't hear anything back, so I guess that is good. Everything seems to be stable. I tried to stop by Sarahs on the way home, but I didn't get a hold of her until I was back in San Jose. I leave for UCSF at 6.15 am. I usually leave to come back home around lunch. I just couldn't get ahold of her before then. I will post an update on her as soon as I hear.
I can't thank you all enough for your support. The meals, helping with Donovan..even the littlest chores mean so much to me. None of it goes unnoticed. I think it is human nature to concentrate on the negative. I have lost friends who expect me to be the same person I was before I got sick. They look at me to be there for them in a way I can't be right now. But so many more have stepped up and become amazing sources of strength for me.
For that I am really greatful.
Catherine
Today I went to my month check up. I counted my month as 4 weeks post surgery. But, the doctors considered the 16th of this month as my month post surgery. I am losing one medication, Fluconazole or Diflucan. That is a pill I take once a week. Everything else is staying the same, but even that one pill is a start. I also was given permission to drive a little bit and take a bath. I wasn't suppose to be allowed to do these things for two more weeks. Amazing how little advancements are such victories.
The time Chris was gone was very hard on me. I rely on him so much. He really is my rock. My mother was great. She was constantly here making sure I was ok and taking care of Donovan. My in-laws even took Donovan for 24 hours. I can't tell you how empty my house is without my boys. It is just so hard to take care of a 3 year old when you can't pick him up. Its very difficult to convince yourself you are a good mother when you can't be alone with your child all day.
I had my usual tests today at UCSF. I didn't hear anything back, so I guess that is good. Everything seems to be stable. I tried to stop by Sarahs on the way home, but I didn't get a hold of her until I was back in San Jose. I leave for UCSF at 6.15 am. I usually leave to come back home around lunch. I just couldn't get ahold of her before then. I will post an update on her as soon as I hear.
I can't thank you all enough for your support. The meals, helping with Donovan..even the littlest chores mean so much to me. None of it goes unnoticed. I think it is human nature to concentrate on the negative. I have lost friends who expect me to be the same person I was before I got sick. They look at me to be there for them in a way I can't be right now. But so many more have stepped up and become amazing sources of strength for me.
For that I am really greatful.
Catherine
Tuesday, November 11, 2008
Lonely Week
Let me start by apologizing for the mistake in my last post. I said I would miss Chris last week. I meant I would miss Chris next week...which is now.
Chris left Sunday very early and caught a flight to Ft Lauderdale via Houston. The flight from Houston to Florida was an adventurous one. He said there were 15 rows, 3 seats each row on the flight and it was EXTREMELY bumpy. He finished by saying how glad he was that I wasn't on that flight. Didn't sound fun at all. For now he is studying hard at the PGA educational center in Port St Lucy..or somewhere near there.
I have been doing as well as can be expected while he is gone. I have not had a bad headache and my mom has been helpful. I know it is really hard for her. She is trying to balance taking care of me, my 3 year old Donovan, and my ailing father. Tomorrow night, Donovan will spend 24 hours with Chris' parents. It should be a nice break for him and my mom can concentrate on my father. I am fine, but not being able to pick up Donovan or drive anywhere...makes it very scary if there is an emergency. I just do not want to be alone with him. Not being able to pick Donovan up is a very scary thing. And if I needed to drive him to the emergency room, I couldn't. I really do feel trapped. I can't wait until I can drive again. I feel like a teenager dreaming of his/her driver's license..and impending freedom.
I continue to have blood draws an average of 2x a week. No real changes to report. Everything seems to be stable. On the negative side, I am not getting a reduction in pills yet. But, I will take the stability any day.
4 more days until Chris' return..but who is counting. :)
Catherine
Chris left Sunday very early and caught a flight to Ft Lauderdale via Houston. The flight from Houston to Florida was an adventurous one. He said there were 15 rows, 3 seats each row on the flight and it was EXTREMELY bumpy. He finished by saying how glad he was that I wasn't on that flight. Didn't sound fun at all. For now he is studying hard at the PGA educational center in Port St Lucy..or somewhere near there.
I have been doing as well as can be expected while he is gone. I have not had a bad headache and my mom has been helpful. I know it is really hard for her. She is trying to balance taking care of me, my 3 year old Donovan, and my ailing father. Tomorrow night, Donovan will spend 24 hours with Chris' parents. It should be a nice break for him and my mom can concentrate on my father. I am fine, but not being able to pick up Donovan or drive anywhere...makes it very scary if there is an emergency. I just do not want to be alone with him. Not being able to pick Donovan up is a very scary thing. And if I needed to drive him to the emergency room, I couldn't. I really do feel trapped. I can't wait until I can drive again. I feel like a teenager dreaming of his/her driver's license..and impending freedom.
I continue to have blood draws an average of 2x a week. No real changes to report. Everything seems to be stable. On the negative side, I am not getting a reduction in pills yet. But, I will take the stability any day.
4 more days until Chris' return..but who is counting. :)
Catherine
Thursday, November 6, 2008
3 weeks post surgery
Today marks three weeks since I had my transplant. In a lot of ways I am better than expected. I am trying to slowly take myself off pain pills. The incision pain has decreased a lot over the last week, but with my headaches, it is hard to take nothing.
The hardest part for me right now is that I am tired of excepting help. I still can't lift more than 10 pounds and I can not drive. So, there is a lot I can't do. My father was admitted into the hospital for an infection and is not expected to get home for a couple of days. This means Mom is helping Dad and not going to be around. This wouldn't be as tough, but Chris is off to the PGA offices in Florida next week for some testing. So I am going to be struggling alone. Mom has told me not to panic as she will find a way to keep me from being alone and stranded, but I know that taking care of me and Dad will be overwhelming for her.
I never expected to be so dependant on Chris. I was so independent when we met. Being sick is really teaching me to accept help and lean on Chris in a way I never knew I could. I am just so glad he is so patient with me. I will miss him greatly last week.
Sarah is doing great. She is learning to do little walks and even some very light weightlifting. By light, I mean 3 pound weights. Her and I are both very cautious as to not tear our internal stitches. I learned that lesson the hard way my last surgery when I didn't listen and tore my stitches and ended up with a surgical hernia. Now I know better. I always have to learn things the hard way. :)
Thanks again for all the support. The meals that come 3x a week are a life savor. Not having to worry about dinner or large grocery shopping is extremely helpful to me. The food has been amazing. I love to cook, and cant wait to be healthy enough to do so, but I definitely have some new recipes to try.
Had a blood test this morning to test my anti-rejection levels. I will let all know if there is any news.
Cath
The hardest part for me right now is that I am tired of excepting help. I still can't lift more than 10 pounds and I can not drive. So, there is a lot I can't do. My father was admitted into the hospital for an infection and is not expected to get home for a couple of days. This means Mom is helping Dad and not going to be around. This wouldn't be as tough, but Chris is off to the PGA offices in Florida next week for some testing. So I am going to be struggling alone. Mom has told me not to panic as she will find a way to keep me from being alone and stranded, but I know that taking care of me and Dad will be overwhelming for her.
I never expected to be so dependant on Chris. I was so independent when we met. Being sick is really teaching me to accept help and lean on Chris in a way I never knew I could. I am just so glad he is so patient with me. I will miss him greatly last week.
Sarah is doing great. She is learning to do little walks and even some very light weightlifting. By light, I mean 3 pound weights. Her and I are both very cautious as to not tear our internal stitches. I learned that lesson the hard way my last surgery when I didn't listen and tore my stitches and ended up with a surgical hernia. Now I know better. I always have to learn things the hard way. :)
Thanks again for all the support. The meals that come 3x a week are a life savor. Not having to worry about dinner or large grocery shopping is extremely helpful to me. The food has been amazing. I love to cook, and cant wait to be healthy enough to do so, but I definitely have some new recipes to try.
Had a blood test this morning to test my anti-rejection levels. I will let all know if there is any news.
Cath
Wednesday, November 5, 2008
UCSF Meeting
I apologize for the delay in getting this up. I was very tired when I got home from San Francisco yesterday and had a headache most of today.
The short story is my numbers are good. So good in fact that I don't have to return to UCSF for 2 weeks. I do have to add one pill back to my daily consumption. My prograff numbers were lower (that is an anti rejection medication). So, I have increased it a little bit.
The bad news is they think my headaches are from my medication, and as they told me from the start, I am just going to have to deal with it. I am doing my best.
Everyone seems to be sick these days. That is scary since the doctors told me I can't get sick the first two months. Don't know what to do other than keep washing my hands. Some things are out of our control.
Saw Sarah while I was in San Francisco. I am pleased to report she looked the best she has so far. I think she has doubled her walking pace, which was close to turtle speed last week. She is making good strides towards healing.
It is late, I am going back to sleep. Have to wake up again in 2 hours to pee.
Cath
The short story is my numbers are good. So good in fact that I don't have to return to UCSF for 2 weeks. I do have to add one pill back to my daily consumption. My prograff numbers were lower (that is an anti rejection medication). So, I have increased it a little bit.
The bad news is they think my headaches are from my medication, and as they told me from the start, I am just going to have to deal with it. I am doing my best.
Everyone seems to be sick these days. That is scary since the doctors told me I can't get sick the first two months. Don't know what to do other than keep washing my hands. Some things are out of our control.
Saw Sarah while I was in San Francisco. I am pleased to report she looked the best she has so far. I think she has doubled her walking pace, which was close to turtle speed last week. She is making good strides towards healing.
It is late, I am going back to sleep. Have to wake up again in 2 hours to pee.
Cath
Monday, November 3, 2008
A quick post
I have been fighting headaches and nausea the last couple of days. I really hope it is the same ol migraines and isn't the medication. If it is, I am just going to have to deal with it. The doctor told me I may experience migraines the first 6 months, and I was very prone to have that side effect. But when I was ok the first week, I really thought I got lucky. So I am trying to stay positive and stay quiet until this period passes. Tomorrow I spend another morning at UCSF. I should get some additional information then.
Now, I must make an adjustment to my last post. Apparently I misunderstood Sarah. When she pulled off her strips over her incisions, it didn't start bleeding. It just was open. When she said it was like a stab wound I really freaked out. I had this vision of a bloody shirt and panic set in. I am so relieved to hear that the wound was open, but not bleeding. I was in shock that UCSF didn't call her in immediately. Now I understand why. Sarah says her incisions closed up by the next day. She even had her first outing today. She went to visit a friend and even made it up a flight of stairs. So good news on her end.
I will update again after meeting with the surgeon tomorrow.
Cath
Now, I must make an adjustment to my last post. Apparently I misunderstood Sarah. When she pulled off her strips over her incisions, it didn't start bleeding. It just was open. When she said it was like a stab wound I really freaked out. I had this vision of a bloody shirt and panic set in. I am so relieved to hear that the wound was open, but not bleeding. I was in shock that UCSF didn't call her in immediately. Now I understand why. Sarah says her incisions closed up by the next day. She even had her first outing today. She went to visit a friend and even made it up a flight of stairs. So good news on her end.
I will update again after meeting with the surgeon tomorrow.
Cath
Saturday, November 1, 2008
Halloween wrap up
Yesterday I had a great Halloween. I felt decent and was able to sit outside and hand out candy to the trick or treaters. Donovan went trick or treating and we even got some of our well known decorations out to celebrate (thank you Jason and Tricia for the help). Today, however I am paying the price.
I am extremely tired and nauseous and I have a bad headache. I am trying my best to get myself better as quickly as possible.
Sarah had a really bad day yesterday. Her incision opened up and she began to bleed. She says yesterday was horrible, but today she is doing much better and she does not have to return to the doctor. I can't say how bad I feel at each set back she has. I just wish I had all the pain.
Donovan has had a great week. He has had a nanny and a babysitter helping us all week. He got a couple of play dates including a Halloween party with his main squeeze Audrey and her brother Max and another friend Maya, and an afternoon with the Streibecks in which they baked cookies and made puppets,and meals with Aunt Tricia/Uncle Jason and Aunt Theresa. I really think he is having a great time and he sees his life getting back to normal. It is still hard not to be able to hold him. But, I am keeping him really busy.
Back to resting so I can feel better tomorrow.
Cath
I am extremely tired and nauseous and I have a bad headache. I am trying my best to get myself better as quickly as possible.
Sarah had a really bad day yesterday. Her incision opened up and she began to bleed. She says yesterday was horrible, but today she is doing much better and she does not have to return to the doctor. I can't say how bad I feel at each set back she has. I just wish I had all the pain.
Donovan has had a great week. He has had a nanny and a babysitter helping us all week. He got a couple of play dates including a Halloween party with his main squeeze Audrey and her brother Max and another friend Maya, and an afternoon with the Streibecks in which they baked cookies and made puppets,and meals with Aunt Tricia/Uncle Jason and Aunt Theresa. I really think he is having a great time and he sees his life getting back to normal. It is still hard not to be able to hold him. But, I am keeping him really busy.
Back to resting so I can feel better tomorrow.
Cath
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