Canadian Blood Services is putting out an appeal for blood. Their supplies are at a five year low.
I am asking my readership to consider donating blood. I have had hundreds of units over the years and continue to receive red blood cells every two weeks. I also receive platelets every five days.
I know it takes time and yes the needle isn't fun but please consider that ten minutes of discomfort will allow someone to live another day.
Here is the Canadian Blood Services link: www.blood.ca
Thanks,
Hugs and love
E
Friday, June 27, 2014
Weekly update
My behind is very sore. I've been sitting here in clinic for 7.5 hours getting blood, platelets and magnesium. The good news is that I'll be raring to go for the long weekend.
David is coming down tomorrow. I haven't seen him in three weeks so I'm very excited.
Madeleine is coming Monday and she will stay for a week. Its going to be busy but good for me and her.
I did try to convince the doctor to send home early but it was a no go. She is putting me on another immunosuppressant to replace the steroids. She wants that stable first. They are also watching still for GVHD and viral problems.
So I've started to red War and Peace. I figure that should amuse me for awhile.
Blood counts continue as always, not great. <sigh>. One day.....
David is coming down tomorrow. I haven't seen him in three weeks so I'm very excited.
Madeleine is coming Monday and she will stay for a week. Its going to be busy but good for me and her.
I did try to convince the doctor to send home early but it was a no go. She is putting me on another immunosuppressant to replace the steroids. She wants that stable first. They are also watching still for GVHD and viral problems.
So I've started to red War and Peace. I figure that should amuse me for awhile.
Blood counts continue as always, not great. <sigh>. One day.....
Sunday, June 22, 2014
Update for the week
This week has flown by. My best friend, Oksana came down to spend the week with me. It is been wonderful. I haven't seen her in two months and I miss our talks very much. So we have spent a lot of time with a cup of tea, yacking. The weather has been very poor so it was a nice way to pass the hours.
I have been two days in clinic this week. It is much the same procedure as upstairs in unit 57 but things are more casual. The nurses are great. As my platelets start to stabilise I will got in less and less, probably only once a week.
The blood counts have not moved much. I received a red blood transfusion on Friday but that is the first in three weeks which is good news. My white blood count and neutriphils are holding their own at 1.5 and 1.0. I'm pleased as I haven't had a shot of GCSF in about two weeks. The platelets keep falling but we are starting to inch to more time in between transfusions. I'm hoping this is showing a positive trend and not an abberation. Also the production of my baby red blood cells is in the normal range which is exciting.
Madeleine and Michael came this weekend. Both she and I are excited about spending the week together next week. Trying to visit while still parenting in one day is too difficult and stressful.
My transplant doctor is back from holidays this week and I am going to starting asking about when I can come home. I think I can make a good case for an early return. Wish me luck!!!!
Until next time, hugs and love
E
I have been two days in clinic this week. It is much the same procedure as upstairs in unit 57 but things are more casual. The nurses are great. As my platelets start to stabilise I will got in less and less, probably only once a week.
The blood counts have not moved much. I received a red blood transfusion on Friday but that is the first in three weeks which is good news. My white blood count and neutriphils are holding their own at 1.5 and 1.0. I'm pleased as I haven't had a shot of GCSF in about two weeks. The platelets keep falling but we are starting to inch to more time in between transfusions. I'm hoping this is showing a positive trend and not an abberation. Also the production of my baby red blood cells is in the normal range which is exciting.
Madeleine and Michael came this weekend. Both she and I are excited about spending the week together next week. Trying to visit while still parenting in one day is too difficult and stressful.
My transplant doctor is back from holidays this week and I am going to starting asking about when I can come home. I think I can make a good case for an early return. Wish me luck!!!!
Until next time, hugs and love
E
Tuesday, June 17, 2014
Moving on....or down in this case
Hello my friends!
I have some excellent news.
I'm moving down to the bone marrow clinic for care. YAY. It means that I will be officially discharged from hospital to an outpatient basis.
Its another step towards home.
Funnily, the ward doctor is going to follow me down there even though he doesn't have a clinic. In addition, my blood counts aren't considered stable yet either.
So why are they kicking me out? Well two answers are plausible: 1. Elizabeth is becoming a pain in their neck or 2. Elizabeth has whined enough about wanting to be discharged that they are humouring me. The third option is that its a combo of the two; this is likely.
I was reading some followup care about transplant patients. One article said the up to 75% of transplant patients experience depression. anxiety or post-tramatic stress disorder a year after transplant. Even if the numbers are inflated, that is huge! I know from my own experience, going onto the ward every day or two makes me grit my teeth, just to be there! I hate the rooms, the beds, the bathrooms particularly with their awful yellow colour. The idea of going back into hospital makes my insides shake and I get immediately nauseous. I am gleeful when I get to leave and I feel terrible for leaving behind the other inmates....I mean patients.
I told one doctor that going on passes felt like being a lab rat. The rat sees the new open door and cautiously sticks its nose out to sniff. You see the rat is worried. A bar may quickly descend or an electric shock administered. The lab techs will giggle and say "just kidding, silly little rat". She doesn't really believe that the lab coats would ever really let her go.
My transplant doctor howled with laughter when she heard my theory.
But you can see why they want to get rid if me? I think they know my mental sanity and theirs rests on moving me on. And I am grateful! Time heals many things. As I move into my new future, I hope the scars of transplant will heal and I will gain a positive perspective on my time there. After all, I met many angels working on unit 57 and I have a future which was very uncertain before.
The other piece of good news is that my guts seem to be slowly healing. Which will mean I don't have Acute Graft vs. Host disease. I don't need a barrage if uncomfortable tests or long term toxic drug treatment. We are still in the phase where I could develop it or chronic GVHD but let's knock on wood and hope for the best!
In the meantime, I'm starting to plan the last weeks here and my time returning home. Fall activities, wedding, physio in Edmonton, coming home party etc. These things keep me busy and distracted from the long days here. Finally though, I'm starting to see the light at the end of the tunnel.
I hope you are all keeping well,
Hugs and love as always,
E
I have some excellent news.
I'm moving down to the bone marrow clinic for care. YAY. It means that I will be officially discharged from hospital to an outpatient basis.
Its another step towards home.
Funnily, the ward doctor is going to follow me down there even though he doesn't have a clinic. In addition, my blood counts aren't considered stable yet either.
So why are they kicking me out? Well two answers are plausible: 1. Elizabeth is becoming a pain in their neck or 2. Elizabeth has whined enough about wanting to be discharged that they are humouring me. The third option is that its a combo of the two; this is likely.
I was reading some followup care about transplant patients. One article said the up to 75% of transplant patients experience depression. anxiety or post-tramatic stress disorder a year after transplant. Even if the numbers are inflated, that is huge! I know from my own experience, going onto the ward every day or two makes me grit my teeth, just to be there! I hate the rooms, the beds, the bathrooms particularly with their awful yellow colour. The idea of going back into hospital makes my insides shake and I get immediately nauseous. I am gleeful when I get to leave and I feel terrible for leaving behind the other inmates....I mean patients.
I told one doctor that going on passes felt like being a lab rat. The rat sees the new open door and cautiously sticks its nose out to sniff. You see the rat is worried. A bar may quickly descend or an electric shock administered. The lab techs will giggle and say "just kidding, silly little rat". She doesn't really believe that the lab coats would ever really let her go.
My transplant doctor howled with laughter when she heard my theory.
But you can see why they want to get rid if me? I think they know my mental sanity and theirs rests on moving me on. And I am grateful! Time heals many things. As I move into my new future, I hope the scars of transplant will heal and I will gain a positive perspective on my time there. After all, I met many angels working on unit 57 and I have a future which was very uncertain before.
The other piece of good news is that my guts seem to be slowly healing. Which will mean I don't have Acute Graft vs. Host disease. I don't need a barrage if uncomfortable tests or long term toxic drug treatment. We are still in the phase where I could develop it or chronic GVHD but let's knock on wood and hope for the best!
In the meantime, I'm starting to plan the last weeks here and my time returning home. Fall activities, wedding, physio in Edmonton, coming home party etc. These things keep me busy and distracted from the long days here. Finally though, I'm starting to see the light at the end of the tunnel.
I hope you are all keeping well,
Hugs and love as always,
E
Friday, June 13, 2014
Day 50
Drumroll please....
Today we are celebrating Day 50!
Halfway through (maybe more) this transplant process. Its a celebration with mixed feelings.
50 more days of being in Calgary away from my family is a hard prospect to face. I miss them terribly; they are my life. It is especially hard now because Madeleine is missing me a lot and David is very tired from not having any days to rest. I feel helpless to help them from here other than bringing Madeleine down as much as I can and not letting David come down so he can rest.
I am also facing some potential graft vs. Host issues. We are not sure what the issue is but next week, the testing will likely begin. I worry, of course, and wonder if I'm going to have to face the ill effects long term.
My emotional coping resources feel like they are dried up now. I spend a lot if time crying over things that I shouldn't. Mom has been extremely supportive. The nurse said that this is normal and there is nothing that can be done but live day by day, hour by hour.
On the brighter sqide if the coin, it is my hope that we celebrate the worst behind us. It has been a long and wild ride BUT I have bone marrow and two of the three bloodlines are holding their own. That means less likelihood of infection and I haven't needed a red blood transfusion in some time. Its a bright future and somewhere out there, is a person who gave me that future. I hope they feel my gratitude.
Also, we celebrate the incredible generosity of the family who has given us this amazing apartment by the river to live in for free. The family does this for multiple families just as a way to give back. We will never be able to repay their kindness. All they ask is that we pay it forward to someone else.
And lastly, I celebrate how incredibly blessed I am to be surrounded by supportive family and friends. I truly would not be celebrating today without all the caregiving, love and sacrifice that has been made by these people.
This journey is a mixed bag. I think all journeys are. There are things I still have to learn (can anyone say PATIENCE) and there are lessons I've got (quite a few). Some days are brilliant and I feel on top if the world. Some days, I want to curl up and let someone wake me up at the end of 100 days. But I can only trust that this journey will bring me home whole: body, soul and mind. I can only trust that there is another journey waiting for me beyond this one. So here is to 50 days fought through, laughed through and cried through!
All my love,
E
Today we are celebrating Day 50!
Halfway through (maybe more) this transplant process. Its a celebration with mixed feelings.
50 more days of being in Calgary away from my family is a hard prospect to face. I miss them terribly; they are my life. It is especially hard now because Madeleine is missing me a lot and David is very tired from not having any days to rest. I feel helpless to help them from here other than bringing Madeleine down as much as I can and not letting David come down so he can rest.
I am also facing some potential graft vs. Host issues. We are not sure what the issue is but next week, the testing will likely begin. I worry, of course, and wonder if I'm going to have to face the ill effects long term.
My emotional coping resources feel like they are dried up now. I spend a lot if time crying over things that I shouldn't. Mom has been extremely supportive. The nurse said that this is normal and there is nothing that can be done but live day by day, hour by hour.
On the brighter sqide if the coin, it is my hope that we celebrate the worst behind us. It has been a long and wild ride BUT I have bone marrow and two of the three bloodlines are holding their own. That means less likelihood of infection and I haven't needed a red blood transfusion in some time. Its a bright future and somewhere out there, is a person who gave me that future. I hope they feel my gratitude.
Also, we celebrate the incredible generosity of the family who has given us this amazing apartment by the river to live in for free. The family does this for multiple families just as a way to give back. We will never be able to repay their kindness. All they ask is that we pay it forward to someone else.
And lastly, I celebrate how incredibly blessed I am to be surrounded by supportive family and friends. I truly would not be celebrating today without all the caregiving, love and sacrifice that has been made by these people.
This journey is a mixed bag. I think all journeys are. There are things I still have to learn (can anyone say PATIENCE) and there are lessons I've got (quite a few). Some days are brilliant and I feel on top if the world. Some days, I want to curl up and let someone wake me up at the end of 100 days. But I can only trust that this journey will bring me home whole: body, soul and mind. I can only trust that there is another journey waiting for me beyond this one. So here is to 50 days fought through, laughed through and cried through!
All my love,
E
Tuesday, June 10, 2014
Thankfulness and an update
One of the things I struggle with is focusing too much on things , particularly if they are negative. I do this to the exclusion of everything else an sometimes I land in a downward spiral of negativity and unhappiness.
Yesterday for example, I was sitting at the hospital waiting for the doctor, ruminating heavily on my high heart rate and my falling blood counts. I was tense and unhappy. The thoughts "maybe a I heart disease", " maybe I have graft failure" along with others, kept circling like vultures.
Trying to distract myself with a book, I came across an idea that I wanted to share. When his children are worried or distressed, the author of the book plays the game "100 things I'm happy for" with them. Much like counting your blessings, its a way to gain perspective on a situation. Even though things may not being going well, there are many things that are. We can't get so narrowly focused on our problems that we forget all the wonderful things. The author had listed out some things he was grateful for including sarcastic and funny ones.
I decided to give it a try:
I am thankful to have David, who is supportive and loving. I get to marry this fantastic man and share my life and family with him.
I am thankful for Madeleine, for the joy and lessons she brings. For how well she is doing despite the stress.
I am thankful for my family who have given up so much to be here caring for me.
I am thankful not to be in the hospital. That I'm alive and made it this far.
I'm thankful that I'm engrafted, that I'm on the other side of transplant. I'm glad that so far I don't have GVHD.
I'm thankful for the continued support of my friends. I'm not alone and so many people care. I matter.
And thw list went on. I didn't get to 100 before I felt better. Yes I still didn't know the answers to issues I came in with but I was reminded about how much has gone right. A little tool but an effective one.
Update to health:
I was able to see both my transplant and the unit doctor yesterday. As I mentioned above, I have been worried about my blood counts. The platelets aren't holding their own yet, my white blood count has been falling from 5.0 down to 1.5 over the week and while I got a nice boost in red blood cells, they are also falling.
My concern has been graft failure. Graft failure occurs when there wasn't enough stem cell material infused so the graft cannot get going. It is marked by rising and sharp falls of blood counts. Both of my doctors reassured me this is not the case.
My response to an injection called GCSF has shown that the cells are working. My injections have been getting progressively further apart which is a good sign.
One of the frustrating things of transplanting Aplastic Anemics is how slowly the counts come up. I knew it took longer but not this long. This transplant is God's way of trying to teach me patience. David said he would buy me some for Christmas. I asked for Christmas to come early!
The other issue is my heart rate. A week ago I was taken off my heart medication. The theory was that my heart was showing low-normal function and the med may be suppressing my platelet production. Since then my resting heart rate is 115 (normal is 60-100), and walking around I was up 130-170, very high. It was like I was exercising constantly. The doctor has put me onto a different medication now and we are hoping the problem is a passing one as my heart continues to heal from the ICU.
So in the end, all continues to be well. Minor hiccups along the way but I'm still alive and kicking. I will update in a few days as things change.
Hugs and love,
E
Yesterday for example, I was sitting at the hospital waiting for the doctor, ruminating heavily on my high heart rate and my falling blood counts. I was tense and unhappy. The thoughts "maybe a I heart disease", " maybe I have graft failure" along with others, kept circling like vultures.
Trying to distract myself with a book, I came across an idea that I wanted to share. When his children are worried or distressed, the author of the book plays the game "100 things I'm happy for" with them. Much like counting your blessings, its a way to gain perspective on a situation. Even though things may not being going well, there are many things that are. We can't get so narrowly focused on our problems that we forget all the wonderful things. The author had listed out some things he was grateful for including sarcastic and funny ones.
I decided to give it a try:
I am thankful to have David, who is supportive and loving. I get to marry this fantastic man and share my life and family with him.
I am thankful for Madeleine, for the joy and lessons she brings. For how well she is doing despite the stress.
I am thankful for my family who have given up so much to be here caring for me.
I am thankful not to be in the hospital. That I'm alive and made it this far.
I'm thankful that I'm engrafted, that I'm on the other side of transplant. I'm glad that so far I don't have GVHD.
I'm thankful for the continued support of my friends. I'm not alone and so many people care. I matter.
And thw list went on. I didn't get to 100 before I felt better. Yes I still didn't know the answers to issues I came in with but I was reminded about how much has gone right. A little tool but an effective one.
Update to health:
I was able to see both my transplant and the unit doctor yesterday. As I mentioned above, I have been worried about my blood counts. The platelets aren't holding their own yet, my white blood count has been falling from 5.0 down to 1.5 over the week and while I got a nice boost in red blood cells, they are also falling.
My concern has been graft failure. Graft failure occurs when there wasn't enough stem cell material infused so the graft cannot get going. It is marked by rising and sharp falls of blood counts. Both of my doctors reassured me this is not the case.
My response to an injection called GCSF has shown that the cells are working. My injections have been getting progressively further apart which is a good sign.
One of the frustrating things of transplanting Aplastic Anemics is how slowly the counts come up. I knew it took longer but not this long. This transplant is God's way of trying to teach me patience. David said he would buy me some for Christmas. I asked for Christmas to come early!
The other issue is my heart rate. A week ago I was taken off my heart medication. The theory was that my heart was showing low-normal function and the med may be suppressing my platelet production. Since then my resting heart rate is 115 (normal is 60-100), and walking around I was up 130-170, very high. It was like I was exercising constantly. The doctor has put me onto a different medication now and we are hoping the problem is a passing one as my heart continues to heal from the ICU.
So in the end, all continues to be well. Minor hiccups along the way but I'm still alive and kicking. I will update in a few days as things change.
Hugs and love,
E
Friday, June 6, 2014
Redefining
I have been spending the last couple of days settling into the apartment. Its been an interesting experience coming back to a home environment. Almost like a rebuilding of ones self
There are many things that can start to take away your identity in an institutional setting. In the hospital, most of the staff knew me by name but they were more likely to know me by room number. I wore hospital gowns for quite a long time with none of my jewellery. People didn't always knock and I once had a nurse follow me into the bathroom to adjust my iv meds. I stopped caring about who saw me naked or what I looked like. And with losing my hair and all the weight, I don't always recognise myself as the woman who started this journey.
I didn't realise how deeply this ran until I was out and went to pick my outfit for the day. I chose my beloved jeans and a T-shirt and sweater. Looking in the mirror, my inside reaction was "Hey, that's a girl I know." Yesterday, we went to Target and I bought makeup and a tote bag. Simply choosing something I liked was refreshing. It feels like I'm rebuilding my self-image one accessory at a time. I think it's on the inside as well as the outside.
I almost get to choose who Elizabeth is going to be.
I wonder when I come back if people will recignize me. Not my face or body though they have changed, but my spirit. David said that he thought I sounded more like the old me. I hope that's true but I hope also I will come home softer and wiser from this experience. I hope as I rebuild myself, I can hold onto the best of what makes Elizabeth and let go of the rest.
There are many things that can start to take away your identity in an institutional setting. In the hospital, most of the staff knew me by name but they were more likely to know me by room number. I wore hospital gowns for quite a long time with none of my jewellery. People didn't always knock and I once had a nurse follow me into the bathroom to adjust my iv meds. I stopped caring about who saw me naked or what I looked like. And with losing my hair and all the weight, I don't always recognise myself as the woman who started this journey.
I didn't realise how deeply this ran until I was out and went to pick my outfit for the day. I chose my beloved jeans and a T-shirt and sweater. Looking in the mirror, my inside reaction was "Hey, that's a girl I know." Yesterday, we went to Target and I bought makeup and a tote bag. Simply choosing something I liked was refreshing. It feels like I'm rebuilding my self-image one accessory at a time. I think it's on the inside as well as the outside.
I almost get to choose who Elizabeth is going to be.
I wonder when I come back if people will recignize me. Not my face or body though they have changed, but my spirit. David said that he thought I sounded more like the old me. I hope that's true but I hope also I will come home softer and wiser from this experience. I hope as I rebuild myself, I can hold onto the best of what makes Elizabeth and let go of the rest.
Tuesday, June 3, 2014
BIG NEWS
You will never guess what?! I got sprung today!
That's right. I'm out on overnight passes now. Means I'm doing well enough now that I can be in the apartment with my family.
Real food, real bed, not getting poked awake by the lab.....this is big stuff!
My white blood count has raised significantly to 5.0! Yay! Now we hope that holds and watch the platelets. They should be the next to go up. My doctor expects it could take a month or so for this to happen.
I'm very happy and relieved. All of us believe this is a big step to help in my recovery!
Hugs and love,
E
That's right. I'm out on overnight passes now. Means I'm doing well enough now that I can be in the apartment with my family.
Real food, real bed, not getting poked awake by the lab.....this is big stuff!
My white blood count has raised significantly to 5.0! Yay! Now we hope that holds and watch the platelets. They should be the next to go up. My doctor expects it could take a month or so for this to happen.
I'm very happy and relieved. All of us believe this is a big step to help in my recovery!
Hugs and love,
E
Monday, June 2, 2014
Update to where I am
I realised that most of you reading this post will not know where I am in comparison to coming out of ICU two weeks ago.
I have gone from walking with a walker just across a room to doing 5laps around the unit, two times per day.
I have completed my physio goals of being able to work my major muscle groups in squats, leg lifts, clam shells etc.
My kidneys have regained their function and my lungs are clear of fluid.
My heart function (which sent me to ICU) has returned to low normal from moderate to severe dysfunction.
I can take care of my personal hygiene.
I can eat most all foods again though I still am working on making my stomach larger.
From my highest to my lowest weight, I have lost 38 lbs. 20 of that is water weight. The rest I need to gain again.
I feel more balanced and happier and I'm not fearful of everyday.
I have made tremendous strides in my health. While my counts have not been great, I think the body has been busy trying to repair itself. Now that I'm in a good place with my health, I am hoping to see better counts.
It has been a long two weeks and the love and encouragement sent my way has really helped so thank you!
I have gone from walking with a walker just across a room to doing 5laps around the unit, two times per day.
I have completed my physio goals of being able to work my major muscle groups in squats, leg lifts, clam shells etc.
My kidneys have regained their function and my lungs are clear of fluid.
My heart function (which sent me to ICU) has returned to low normal from moderate to severe dysfunction.
I can take care of my personal hygiene.
I can eat most all foods again though I still am working on making my stomach larger.
From my highest to my lowest weight, I have lost 38 lbs. 20 of that is water weight. The rest I need to gain again.
I feel more balanced and happier and I'm not fearful of everyday.
I have made tremendous strides in my health. While my counts have not been great, I think the body has been busy trying to repair itself. Now that I'm in a good place with my health, I am hoping to see better counts.
It has been a long two weeks and the love and encouragement sent my way has really helped so thank you!
Sunday, June 1, 2014
Moments
Its hard being here. Its hard to be in ICU where being drugged and facing death, with no control, only relying on the mercy of God and the good people caring for me. Its hard to come of ICU and not have my body work and not understand the overwhelming fear so many moments bring. Its hard to look down the long road and wonder if I have the stamina, the internal strength to make it without going crazy.
But one moment can make all the difference. The moment my daughter leaned out of the car window desperately waving " I love you" in sign language. And me waving back the same, trying not to cry.
As I wrote that last line, in walked David to surprise me. I laughed and cried at the same time. Another moment.
A video call....
A story of hope.....
A Facebook message delivered just at the right moment.....
The hug of my parents and the words, "It's going to be OK"....
I have been given these moments for hope and encouragement. They are the whispers to the heart "All is well."
But one moment can make all the difference. The moment my daughter leaned out of the car window desperately waving " I love you" in sign language. And me waving back the same, trying not to cry.
As I wrote that last line, in walked David to surprise me. I laughed and cried at the same time. Another moment.
A video call....
A story of hope.....
A Facebook message delivered just at the right moment.....
The hug of my parents and the words, "It's going to be OK"....
I have been given these moments for hope and encouragement. They are the whispers to the heart "All is well."
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