Today was a good dialysis day..... I had been having problems that my blood pressure was too low after my three and a half hours... but today everything just seemed to go ok.
It felt strange though because I had been going at 8:30 am, but have been switched to 10:00... its good because I can get Hannah to school and come home to get ready, but I don't like finishing at 2:00...... it is really going to be a drag on Saturdays...... I think I will have those hours on Christmas Eve too..... I am not organized enough to be at the dialysis center on Christmas Eve.... however I guess it is better than Christmas Day!
A bunch of blood was taken today .... I was told that some of it was for tissue typing at Beth Isreal, so someone must have really come forward to be tested to be a donor!....... still trying not to get too excited!
Tuesday, December 11, 2007
Friday, December 7, 2007
My Mom's Plea
I wanted post this beautiful letter that my mom wrote on my behalf. We got many responses from it, and a few people have contacted the hospital! I am afraid to get my hopes up, and am completely overwhelmed by the generosity of strangers. How do you say Thank You when saying Thank you isn't enough? -Christy
“To Give is to Love and to Love is to Live”……….
The purpose of this note to you is to humbly ask you to help me put this request out to the Universe.
My beautiful young daughter Christy has come to the point in her life which since early childhood we have known was a genetic probability - her kidneys have failed, and she now must rely on the dialysis machine to keep her alive.
Some of us in her family attempted to be a living kidney donor for Christy, but unfortunately for various medical reasons we were not acceptable candidates.
Christy is of course on a waiting list of several thousand to receive a deceased person’s kidney, but in the meantime, we believe that someone in the world may have a calling to be a living donor for her.
If you or someone you know would be interested in confidentially learning more about living donors, please call Betsy at Beth Israel Deaconess Hospital at 617-632-9830, and tell her you are calling about Christy.
Information can also be found online at http://www.pkdcure.org/, or http://www.livingdonor.org/.
It is a huge intellectual, emotional, physical, financial and spiritual undertaking, but giving in this beautiful way, may be just what someone may be needing in their life.
Thank you so very much for taking the time to read this e-mail.
With gratitude,
Nancy
“To Give is to Love and to Love is to Live”……….
The purpose of this note to you is to humbly ask you to help me put this request out to the Universe.
My beautiful young daughter Christy has come to the point in her life which since early childhood we have known was a genetic probability - her kidneys have failed, and she now must rely on the dialysis machine to keep her alive.
Some of us in her family attempted to be a living kidney donor for Christy, but unfortunately for various medical reasons we were not acceptable candidates.
Christy is of course on a waiting list of several thousand to receive a deceased person’s kidney, but in the meantime, we believe that someone in the world may have a calling to be a living donor for her.
If you or someone you know would be interested in confidentially learning more about living donors, please call Betsy at Beth Israel Deaconess Hospital at 617-632-9830, and tell her you are calling about Christy.
Information can also be found online at http://www.pkdcure.org/, or http://www.livingdonor.org/.
It is a huge intellectual, emotional, physical, financial and spiritual undertaking, but giving in this beautiful way, may be just what someone may be needing in their life.
Thank you so very much for taking the time to read this e-mail.
With gratitude,
Nancy
Thursday, December 6, 2007
The last two weeks
I have been going to dialysis now for almost three weeks..... I had wanted to write about each of my treatments, but life has gotten crazy hectic:
My dad was visiting from Wisconsin, it was so nice to have him here, (his visit had been planned prior to all this dialysis). I did feel bad, because his visit consisted of watching Ethan, (my beautiful 2 year old), and taking me to doctor's appointments. He went home last Wednesday....hopefuly he will be back to visit soon, when things calm down.
my husband ended up in the ER a week after everything happened.....he woke up with trouble breathing... he said he felt like he was drowning... and couldn't get air, so off to the emergency room we went, they ran a bunch of tests, and thankfully found nothing.... I guess it was a panic attack.... I don't blame him one bit for having it... I thinkI need to be more aware that PKD is affecting my family and not just me....I am obviously getting the attention and the "how are you feeling?" questions... but we forget about the rest of my family.
I am worried about my daughter though, she is seven, and to have mommy and daddy go the the hospital within a week of eachother is a lot to handle for a little girl. Her teacher said that she seems to be dealing with it so far, so I will just take her lead.
Hannah was in a holiday dance show this past weekend, and was beautiful. I am so proud of her. I was helping backstage, but had some trouble during the Saturday matinee, because it was right after dialysis.... I just started to feel dizzy and tired... I'm not sure of my limitations yet.
and lastly during my crazy two weeks, I had to go back to the hospital for yet another surgury. My fistula seems to be ok, but it is too deep in my arm, so the doctor had to go back into my arm and lift the artery closer to the surface. The operation was really no big deal, I had a great team, and slept through it... but I have to say, it hurts quite a bit right now... and it is not easy to keep my son from jumping on me.... as much as I love him.......it really hurts. The scar will be the length of my upper arm, and he said that I will probably be able to use my fistula in three to four weeks...... it will be nice to get the cathiter out of my chest.... that will be another surgury.... yikes!
My dad was visiting from Wisconsin, it was so nice to have him here, (his visit had been planned prior to all this dialysis). I did feel bad, because his visit consisted of watching Ethan, (my beautiful 2 year old), and taking me to doctor's appointments. He went home last Wednesday....hopefuly he will be back to visit soon, when things calm down.
my husband ended up in the ER a week after everything happened.....he woke up with trouble breathing... he said he felt like he was drowning... and couldn't get air, so off to the emergency room we went, they ran a bunch of tests, and thankfully found nothing.... I guess it was a panic attack.... I don't blame him one bit for having it... I thinkI need to be more aware that PKD is affecting my family and not just me....I am obviously getting the attention and the "how are you feeling?" questions... but we forget about the rest of my family.
I am worried about my daughter though, she is seven, and to have mommy and daddy go the the hospital within a week of eachother is a lot to handle for a little girl. Her teacher said that she seems to be dealing with it so far, so I will just take her lead.
Hannah was in a holiday dance show this past weekend, and was beautiful. I am so proud of her. I was helping backstage, but had some trouble during the Saturday matinee, because it was right after dialysis.... I just started to feel dizzy and tired... I'm not sure of my limitations yet.
and lastly during my crazy two weeks, I had to go back to the hospital for yet another surgury. My fistula seems to be ok, but it is too deep in my arm, so the doctor had to go back into my arm and lift the artery closer to the surface. The operation was really no big deal, I had a great team, and slept through it... but I have to say, it hurts quite a bit right now... and it is not easy to keep my son from jumping on me.... as much as I love him.......it really hurts. The scar will be the length of my upper arm, and he said that I will probably be able to use my fistula in three to four weeks...... it will be nice to get the cathiter out of my chest.... that will be another surgury.... yikes!
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