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!
Sunday, November 25, 2007
Dialysis again
Yesterday, (Saturday), was my first day of dialysis in the facility that I will be going to until I am transplanted. I actually went in on Friday to say hello, and to fill out some paperwork.... The people were very nice, and there was a lot to go over. I was given my "dialysis welcome bag" I am to bring it to each treatment... inside it was a nice fleece blanket, a welcome binder notebook with information that I haven't read yet, a pillow, and headphones for the tv....the actual bag is nice too.
So, I wasn't sure what to wear on my first day of outpatient dialysis...... hmmmm... it is like starting a new job..... I will be spending at the very least 12 hours a week with these people, the nurses and other patients.... I want to make a good impression as I sit in a chair while a machine drains my blood...... not an easy perdiciment to be in.....do I go for super comfortable sweats? My favorite comfortable ripped jeans that my grandmother keeps telling me not to wear in front of her?....... do I wear a comfortable skirt and shirt?..........will I nap? Pajamas? .......shoes? slippers? hair up? down? brushed? messy?
Not too hard of a choice after all.... I had been sick for the last three weeks, no clean clothes, I could only find a pair of jeans, a tee-shirt, and a zipper down sweat shirt.
My actual dialysis wasn't too bad. The room was large and bright, there were about 10-15 dialysis chairs and machines against the walls, the center of the room had the nurses work stations. Each chair had a good size flat screen tv that could be pulled in front of you. My place has direct tv, with satilite radio, so there was enough to watch and listen too...... I just plugged the headphones on and listened to the radio... I was trying to psych myself up for 3.5 hours, so I had the music loud, and was trying not to sing.....it worked for the first hour.
For the second hour, I wondered what I could do... I had brought a book, but didn't feel like reading it, I turned off the radio, and tried to watch tv.... not really anything interesting on a Saturday morning.... so I watched the people..... most of them were sleeping......The tv is all touch sensored, and actually had solitare on it, so I played solitaire on my tv.....lost every game but never gave up.
My third hour.....didn't think I would make it....... started fidigiting, and I was feeling fizzy/tingly again. I told the nurse about that, she adjusted the machine, but the feeling was still kind of there..... she said that it may be because my blood was filled with toxins, and now that it's cleaner, my body hasn't adjusted yet...... It felt as though my blood was carbonated.
half hour to go!
My dad is visiting from the mid west this week, so he was able to spend the last hour sitting with me. I made it through!
..... when I was done and went out into the lobby, my wonderful husband, two children, my sister and my dad were all there, (they had been out and about, and stopped by as I finished)... we went out to lunch, and then home .
I was tired the rest of the afternoon, but I had been up late the night before..... overall, not so bad..... I'll need things to do....Christmas is coming.... will have to get the cards out.... think I'll have some time over the next few weeks!
So, I wasn't sure what to wear on my first day of outpatient dialysis...... hmmmm... it is like starting a new job..... I will be spending at the very least 12 hours a week with these people, the nurses and other patients.... I want to make a good impression as I sit in a chair while a machine drains my blood...... not an easy perdiciment to be in.....do I go for super comfortable sweats? My favorite comfortable ripped jeans that my grandmother keeps telling me not to wear in front of her?....... do I wear a comfortable skirt and shirt?..........will I nap? Pajamas? .......shoes? slippers? hair up? down? brushed? messy?
Not too hard of a choice after all.... I had been sick for the last three weeks, no clean clothes, I could only find a pair of jeans, a tee-shirt, and a zipper down sweat shirt.
My actual dialysis wasn't too bad. The room was large and bright, there were about 10-15 dialysis chairs and machines against the walls, the center of the room had the nurses work stations. Each chair had a good size flat screen tv that could be pulled in front of you. My place has direct tv, with satilite radio, so there was enough to watch and listen too...... I just plugged the headphones on and listened to the radio... I was trying to psych myself up for 3.5 hours, so I had the music loud, and was trying not to sing.....it worked for the first hour.
For the second hour, I wondered what I could do... I had brought a book, but didn't feel like reading it, I turned off the radio, and tried to watch tv.... not really anything interesting on a Saturday morning.... so I watched the people..... most of them were sleeping......The tv is all touch sensored, and actually had solitare on it, so I played solitaire on my tv.....lost every game but never gave up.
My third hour.....didn't think I would make it....... started fidigiting, and I was feeling fizzy/tingly again. I told the nurse about that, she adjusted the machine, but the feeling was still kind of there..... she said that it may be because my blood was filled with toxins, and now that it's cleaner, my body hasn't adjusted yet...... It felt as though my blood was carbonated.
half hour to go!
My dad is visiting from the mid west this week, so he was able to spend the last hour sitting with me. I made it through!
..... when I was done and went out into the lobby, my wonderful husband, two children, my sister and my dad were all there, (they had been out and about, and stopped by as I finished)... we went out to lunch, and then home .
I was tired the rest of the afternoon, but I had been up late the night before..... overall, not so bad..... I'll need things to do....Christmas is coming.... will have to get the cards out.... think I'll have some time over the next few weeks!
Friday, November 23, 2007
Dialysis already?
I didn't plan on writing about dialysis so soon in my blog because I was told that I probably wouldn't have to go on it until after the holidays... oops!
Last Monday I decided to go to the ER, I hadn't been sleeping for three weeks, my legs were twitchy, I was throwing up every night for a week, my teeth hurt, (that could just be the need of a dentist), I felt that I needed to be monitored. I sent my husband to work, got my daughter on the bus, found a sitter for my son, and had my mom drive me to the hospital. I don't think I planned on going when I woke up, but something shouted in me... GO!
Well, my creatine was 8.5... last month it was 6.5, and my calcium was 15 almost twice the normal amount. The ER doc called my Nephrologist, and she asked me to meet her at a different hospital because I needed to start dialysis right away!
Darn-it! (I might have used a different word)... I wasn't supposed to start until after the holidays! I had to have a cathiter placed in my chest to provied access to the dialysis machine. I will keep this in until the fistula is ready.
I had a fistula put in (is that the right way to phrase it?) (A surgury to attach the vein and artery which will then be used as an access to dialysis)....... Anyway, I had that surgury in late September, the fistula has to "mature" and takes about three months....mine wasn't ready for dialysis!
I was hooked to the dialysis machine at about 3:30 on Monday. It wasn't bad, I was the only person receiving dialysis at that time so I was able to ask the woman in the dialysis center lots of questions. My mom stayed with me for the first hour and then my husband showed up.... The time went by quickly.
I don't know what I thought dialysis would feel like, to be very honest, I didn't feel much of anything. The last half hour my face felt a little tingly, but that went away.
I did feel better after the treatment... I was hungry, which I hadn't been for a while. I wasn't throwing up.... which is always a nice thing. ... and I was suprisingly calm. My doctor had done a great job preparing me mentaly so that I would be ok when the time came for dialysis.
I had my second treatment at 9:30 the next morning... I had that same tingly feeling and my legs were really twitchy, but I got through it... i'll have to remember to bring a book next time... I didn't really have any distractions on day two, and got kind of bored.
I was released from the hospital after the treatment, and was so happy to see my children. Hannah is a little grossed out by the cathiter... it's hidden, but everynow and then she sees the stiches..... Ethan is only two, he doesn't know what is going on, and just wants to rough-house.... I am going to have to figure out a safe way to do that with him.
It is a little scary knowing that I have to now do dialysis three times a week for three to four hours each time..... but it is a journey, and I think I'm up for the trip.
Last Monday I decided to go to the ER, I hadn't been sleeping for three weeks, my legs were twitchy, I was throwing up every night for a week, my teeth hurt, (that could just be the need of a dentist), I felt that I needed to be monitored. I sent my husband to work, got my daughter on the bus, found a sitter for my son, and had my mom drive me to the hospital. I don't think I planned on going when I woke up, but something shouted in me... GO!
Well, my creatine was 8.5... last month it was 6.5, and my calcium was 15 almost twice the normal amount. The ER doc called my Nephrologist, and she asked me to meet her at a different hospital because I needed to start dialysis right away!
Darn-it! (I might have used a different word)... I wasn't supposed to start until after the holidays! I had to have a cathiter placed in my chest to provied access to the dialysis machine. I will keep this in until the fistula is ready.
I had a fistula put in (is that the right way to phrase it?) (A surgury to attach the vein and artery which will then be used as an access to dialysis)....... Anyway, I had that surgury in late September, the fistula has to "mature" and takes about three months....mine wasn't ready for dialysis!
I was hooked to the dialysis machine at about 3:30 on Monday. It wasn't bad, I was the only person receiving dialysis at that time so I was able to ask the woman in the dialysis center lots of questions. My mom stayed with me for the first hour and then my husband showed up.... The time went by quickly.
I don't know what I thought dialysis would feel like, to be very honest, I didn't feel much of anything. The last half hour my face felt a little tingly, but that went away.
I did feel better after the treatment... I was hungry, which I hadn't been for a while. I wasn't throwing up.... which is always a nice thing. ... and I was suprisingly calm. My doctor had done a great job preparing me mentaly so that I would be ok when the time came for dialysis.
I had my second treatment at 9:30 the next morning... I had that same tingly feeling and my legs were really twitchy, but I got through it... i'll have to remember to bring a book next time... I didn't really have any distractions on day two, and got kind of bored.
I was released from the hospital after the treatment, and was so happy to see my children. Hannah is a little grossed out by the cathiter... it's hidden, but everynow and then she sees the stiches..... Ethan is only two, he doesn't know what is going on, and just wants to rough-house.... I am going to have to figure out a safe way to do that with him.
It is a little scary knowing that I have to now do dialysis three times a week for three to four hours each time..... but it is a journey, and I think I'm up for the trip.
Wednesday, November 14, 2007
The Journey Begins...finding out
November 15, 2007
I guess this is my blog.... this is the first entry....I'm Christy, I've just turned 40 (yikes), and I have PKD (Polycystic Kidney Disease). I'm just going to write my stream of consiousness about the disease, and what my fears are, and how I'm feeling.
Right now it is almost 3:00 a.m. and I am going on my third week of sleeplessness, so I'm feeling tired and frustrated that I can't get to sleep....I'll get into all of that another day.
I have two beautiful children, Hannah (7) and Ethan (2)... and a great husband Jim.
The title of this blog is Christy's PKD Journey, because that is what it seems to me, a journey... where you kind of know where you're going, but you aren't sure of all the turns you will take on the way.....
So here is the begining of my journey:
I remember the 5th grade (a long time ago 1977). My dad was having some vision problems, and he had lots of exams to figure out what was the cause..... His vision is fine now, I don't remember what the exact cause was, (stress?) but along the way, one of the exams showed he had Polycystic Kidney Disease..... I guess because he had it, and it was hereditary my sister and I were both checked....I remember this clearly because I was sent to school that day of my x-ray with a thermous of broth.... I was 10!...... I didn't like broth, and one of my classmates had a birthday and brought in cupcakes, and I couldn't have it, I could only eat broth because I was having an x-ray, or something.
Well anyway, it was confirmed that my sister Sara and I did in fact have PKD. I was told that it was a kidney disease that creates little bubbles on my kidney, and many people can go through life not even knowing that they have it..... I was not one of those people!
I guess this is my blog.... this is the first entry....I'm Christy, I've just turned 40 (yikes), and I have PKD (Polycystic Kidney Disease). I'm just going to write my stream of consiousness about the disease, and what my fears are, and how I'm feeling.
Right now it is almost 3:00 a.m. and I am going on my third week of sleeplessness, so I'm feeling tired and frustrated that I can't get to sleep....I'll get into all of that another day.
I have two beautiful children, Hannah (7) and Ethan (2)... and a great husband Jim.
The title of this blog is Christy's PKD Journey, because that is what it seems to me, a journey... where you kind of know where you're going, but you aren't sure of all the turns you will take on the way.....
So here is the begining of my journey:
I remember the 5th grade (a long time ago 1977). My dad was having some vision problems, and he had lots of exams to figure out what was the cause..... His vision is fine now, I don't remember what the exact cause was, (stress?) but along the way, one of the exams showed he had Polycystic Kidney Disease..... I guess because he had it, and it was hereditary my sister and I were both checked....I remember this clearly because I was sent to school that day of my x-ray with a thermous of broth.... I was 10!...... I didn't like broth, and one of my classmates had a birthday and brought in cupcakes, and I couldn't have it, I could only eat broth because I was having an x-ray, or something.
Well anyway, it was confirmed that my sister Sara and I did in fact have PKD. I was told that it was a kidney disease that creates little bubbles on my kidney, and many people can go through life not even knowing that they have it..... I was not one of those people!
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