Friday, June 25, 2010
Options for Life
Options for Life - Viewer Discrection is Advised. from ODTAC on Vimeo.
Found this video on the Canadian Organ Donation site, and although its not speaking directly to anonymous donation and focuses more on Marginal donation, its still a worthwhile 12minutes.
Dear Mom, I'm donating a Kidney
Okay, so that might not be the best way to start the conversation, but I think its going to have to happen. A very wise friend of mine told me that parents (no matter how old the child is) do not like to be told that something is happening, they like to be involved in the process. So by telling my mother before the date is set, and letting her go through the remainder of the process with me, I am more likely to have her support and the relationship will be better long-term. Therefor I have altered my plan of not telling them until the date is set for surgery.
Thats wonderful. That really is. Now how do I do it?
But, I do know that I will have more support post-op and my husband will have some help taking care of me when I am convalescing.
I guess maybe the reason I'm scared to tell her is that I'm scared I will get the "negative support" that I got from my boss and her husband.
The weekend after I tell my mom and dad, we go visit the in-laws and I will be telling them as well. Not overly worried about that just yet, but I think a lot of how I feel about telling them will depend on what happens next weekend when I tell my mom.
The question is: If they hate the idea and are really against it, how will that affect me? And will they be able to support my decision even if they don't agree with it?
Any ideas?
Thats wonderful. That really is. Now how do I do it?
Part of my anxiety about this is I don't want this to overtake the weekend. I would just like to tell her, answer her questions, then move on. I want to see my family and spend time with them, not spend the entire time talking about this. So I'm thinking I might do it on Sunday before we leave, or maybe over dinner and a bottle of wine.
I love my mother so much, and I want her love and support. But, and there is always a but when it comes to family, I don't want her to spread this around. I don't know if I even want my brother to know. The more people that know the more likely this will get out or something, and I prefer to have it be just something I'm doing, then move on with life when it's done. And the more people that know, the harder that will be.
I guess maybe the reason I'm scared to tell her is that I'm scared I will get the "negative support" that I got from my boss and her husband.
The weekend after I tell my mom and dad, we go visit the in-laws and I will be telling them as well. Not overly worried about that just yet, but I think a lot of how I feel about telling them will depend on what happens next weekend when I tell my mom.
The question is: If they hate the idea and are really against it, how will that affect me? And will they be able to support my decision even if they don't agree with it?
Any ideas?
Too low to go
On June 16th I ment with the nephrologist (and the rest of the committee) and we talked risks and the gambit. The next day I emailed my transplant coordinator with a signed copy of my Personal Directive, and a note letting her know that my husband and I had talked about the risks and were comfortable moving forward. Then I got the news regarding my low iron. Blah! My iron levels are at an 8, and the acceptable range is 12-31. Thats really low. I'll have a lot of work to do to make sure that I get my iron up. And the transplant cant move forward until I get it up. Meaning the team cannot all come together and decide if I'm fit for donation. Mentally I'm good to go, and physically all my tests have come back looking good, but the only thing is my Iron.
To me, this seemed like a really small thing, but then I did some research, and here's what I found:
"The body needs iron to make hemoglobin, a substance in red blood cells that carries oxygen from the lungs to body tissues. Much of the iron our body is stored in the bone marrow that makes blood cells. When there is not enough iron in the bloodstream, the body uses the bone marrow reserves. If this iron stored in the bone marrow is low, red blood cells do not form properly: they are smaller than usual (microcytosis) and fewer. As a result, less hemoglobin is available to transport oxygen throughout the body."
Also: "Your body needs iron so it can make hemoglobin, a substance in red blood cells that carries oxygen from the lungs to body tissues. Brain activity, breathing, cellular respiration and every activity of the body depends on there being enough iron in the blood."
Note to self: Get iron levels up. My Transplant Coordinator did say that she has delt with this before and the treatment was IV iron. Eeek. I hate needles, with a passion. But, if thats what it takes, then thats what I'll do.
So today I go to my family doctor to work on this, and will be having all test results sent to the hospital as well to keep them in the loop. Cannot wait to have my iron levels back up.
To me, this seemed like a really small thing, but then I did some research, and here's what I found:
"The body needs iron to make hemoglobin, a substance in red blood cells that carries oxygen from the lungs to body tissues. Much of the iron our body is stored in the bone marrow that makes blood cells. When there is not enough iron in the bloodstream, the body uses the bone marrow reserves. If this iron stored in the bone marrow is low, red blood cells do not form properly: they are smaller than usual (microcytosis) and fewer. As a result, less hemoglobin is available to transport oxygen throughout the body."Also: "Your body needs iron so it can make hemoglobin, a substance in red blood cells that carries oxygen from the lungs to body tissues. Brain activity, breathing, cellular respiration and every activity of the body depends on there being enough iron in the blood."
Note to self: Get iron levels up. My Transplant Coordinator did say that she has delt with this before and the treatment was IV iron. Eeek. I hate needles, with a passion. But, if thats what it takes, then thats what I'll do.
So today I go to my family doctor to work on this, and will be having all test results sent to the hospital as well to keep them in the loop. Cannot wait to have my iron levels back up.
Wednesday, June 16, 2010
The problem is its Anynomous
Met with the nephrologist today (and by the nephrologist, I mean, her, the "student" doctor (its a teaching hospital after all) and my transplant coordinator. Gotta admit, it was not what I expected.
What I expected was to go there, sit the the Doctor and review my test results and confirm that I am medically fit to donate. Well, let me tell you, this went much different.
When I first got to the hospital, I had to go for a blood test for Tissue Typing. This normally would have been done to check compatibility with the intended recipient. However, since I am not donating to anyone in particular, this was done to determine the ins and outs of my tissue. Goodness do I hate needles.
Back to the meeting with the "Committee." This was more of a discussion of the risks, and did I really understand that this is not a small thing that I'm doing, and that once the kidney is gone, its gone. Yes. Got it.
I'm young. I'm married. I have not had children yet. And yes, we want kids. According to the nephrologist, that makes me her last choice for a donor due to the increased risks. She let me know of her personal bias, and I felt as though she treated me like a silly little girl who didn't know what she was doing and was too naive to know better.
We spent a lot of time talking about the risks, what they were, and how do I feel about them. The entire time I felt as though I needed to defend my decision and like I was being attacked.
Throw in a blood test (to check my iron levels) at the end of this 45minute fiasco and I was ready to leave. My boss and her husband have made it clear how they feel about my decision. They are against it. They think I should wait. And when I got back to the office, they were both there, and of course we went back to the discussion as to "Should I, or Should I Not". I felt attacked. I felt I was getting it from all angles. I know they love me a support me and are just being protective, but it was hard.
I ran into a girlfriend of mine shortly after this discussion, and although she supports me, she would never make the same decision, as there are slightly increased risks during pregnancy.
I was taken aback. I admit, I was confused and conflicted. I mean, if this many people were against the decision, did I need to rethink what I was doing? So when my husband and I were eating dinner we talked openly and honestly about all this, including the risks, and how this may affect us and any children we may have down the road. We are comfortable with the risks, we know that this is a relatively small in my life to potentially give someone back theirs.
The point of this post, more so than a chronicle of what this appointment and the process is like, is that I've figured out why people have an issue with my donation. If I said "my sister is sick and I'm a match" I would be considered selfish and not a good person if I didn't donate to her. If I didn't donate to my sister because of the increased risk to me as compared to the definitive fact that she would die without a kidney, most people would wonder how I could sleep at night. But because I'm doing this anonymously, there's an issue. It doesn't matter that its still some one's child, a mother, a father, a brother, a sister, a husband, a wife. Because I do not know them, this is a silly decision.
I get it. I know understand what these people have been telling me, I understand why they don't think I should do it. But now, more so than before, I am determined to go through with this. I believe in what I;m doing, I believe that I should be doing this, and know in my heart that this is the right thing to do.
What I expected was to go there, sit the the Doctor and review my test results and confirm that I am medically fit to donate. Well, let me tell you, this went much different.
When I first got to the hospital, I had to go for a blood test for Tissue Typing. This normally would have been done to check compatibility with the intended recipient. However, since I am not donating to anyone in particular, this was done to determine the ins and outs of my tissue. Goodness do I hate needles.
Back to the meeting with the "Committee." This was more of a discussion of the risks, and did I really understand that this is not a small thing that I'm doing, and that once the kidney is gone, its gone. Yes. Got it.
I'm young. I'm married. I have not had children yet. And yes, we want kids. According to the nephrologist, that makes me her last choice for a donor due to the increased risks. She let me know of her personal bias, and I felt as though she treated me like a silly little girl who didn't know what she was doing and was too naive to know better.
We spent a lot of time talking about the risks, what they were, and how do I feel about them. The entire time I felt as though I needed to defend my decision and like I was being attacked.
Throw in a blood test (to check my iron levels) at the end of this 45minute fiasco and I was ready to leave. My boss and her husband have made it clear how they feel about my decision. They are against it. They think I should wait. And when I got back to the office, they were both there, and of course we went back to the discussion as to "Should I, or Should I Not". I felt attacked. I felt I was getting it from all angles. I know they love me a support me and are just being protective, but it was hard.
I ran into a girlfriend of mine shortly after this discussion, and although she supports me, she would never make the same decision, as there are slightly increased risks during pregnancy.
I was taken aback. I admit, I was confused and conflicted. I mean, if this many people were against the decision, did I need to rethink what I was doing? So when my husband and I were eating dinner we talked openly and honestly about all this, including the risks, and how this may affect us and any children we may have down the road. We are comfortable with the risks, we know that this is a relatively small in my life to potentially give someone back theirs.
The point of this post, more so than a chronicle of what this appointment and the process is like, is that I've figured out why people have an issue with my donation. If I said "my sister is sick and I'm a match" I would be considered selfish and not a good person if I didn't donate to her. If I didn't donate to my sister because of the increased risk to me as compared to the definitive fact that she would die without a kidney, most people would wonder how I could sleep at night. But because I'm doing this anonymously, there's an issue. It doesn't matter that its still some one's child, a mother, a father, a brother, a sister, a husband, a wife. Because I do not know them, this is a silly decision.
I get it. I know understand what these people have been telling me, I understand why they don't think I should do it. But now, more so than before, I am determined to go through with this. I believe in what I;m doing, I believe that I should be doing this, and know in my heart that this is the right thing to do.
Monday, June 7, 2010
What's the difference?
For most of this process there has not been much of a difference between what I am going through, and what a person donating to a loved one would go through.
Some key differences have been that when dealing with many technicians and doctors, they do not know that I am anonymous, and thus always ask about the person I am donating to. Sometime I say a friend (especially if I dont feel the need to get into why I am doing this), however when I do tell people, it normally comes as a bit of a shock.
After speaking with the wonderful woman who is coordinating my donation, we did note a small difference. On the 18th when I meet with the nephrologist, I will also be getting my tissue typed. This is a simple blood test, and would normally correspond with matching my tissue with the intended recipient, however as I do not have an intended recipient, they are getting information on my tissue to be used in the future to help find a match.
So a small difference, but still a notable one. And it does mean that I am getting closer and closer to surgery! Yay! Have the blood test, this coming appointment, one or two more instances where I need to give a urine sample, and then a meeting with a surgeon. Very excited!
And it has been decided that we are moving the time frame for surgery to November, as for my work there is a rather large event in October in which I am instrumental in the planning, and with where we are in the process I don't think I would be able to donate and return to work by September 1st. Thus any time after October 23rd works just fine, and has my boss' support.
Some key differences have been that when dealing with many technicians and doctors, they do not know that I am anonymous, and thus always ask about the person I am donating to. Sometime I say a friend (especially if I dont feel the need to get into why I am doing this), however when I do tell people, it normally comes as a bit of a shock.
After speaking with the wonderful woman who is coordinating my donation, we did note a small difference. On the 18th when I meet with the nephrologist, I will also be getting my tissue typed. This is a simple blood test, and would normally correspond with matching my tissue with the intended recipient, however as I do not have an intended recipient, they are getting information on my tissue to be used in the future to help find a match.
So a small difference, but still a notable one. And it does mean that I am getting closer and closer to surgery! Yay! Have the blood test, this coming appointment, one or two more instances where I need to give a urine sample, and then a meeting with a surgeon. Very excited!
And it has been decided that we are moving the time frame for surgery to November, as for my work there is a rather large event in October in which I am instrumental in the planning, and with where we are in the process I don't think I would be able to donate and return to work by September 1st. Thus any time after October 23rd works just fine, and has my boss' support.
Wednesday, June 2, 2010
My Shrink Has an iPad
Psych assessment. Was more nervous that I thought I would be, the meeting with the Social Worker got into a lot of detail, so mentally I was gearing up for the same thing. But it wasn't, not in the slightest.
This meeting was all about finding out if I had any mental reason that may either prevent me from donating, or, that may have an impact of the post-op.
Here's how it went: Appoint was for 2pm, I was there at 1:30. Needlessly early for sure, but wasn't sure if there was going to be paperwork or anything like that to fill out. There wasn't. Thankfully I came prepared with a book (The Great Gatsby) and waited. 2:05 and the Dr comes out to get me.
He was younger than I anticipated, very well dressed and well spoken. His office was a decent size, not cramped but not overly large. Noticeably absent was a chaise lounge or a couch, or any of the typical furnishing you may expect in a shrink's office. Had I not know what he did, I would not have expected this to be a psychiatrist's office. The only thing that would have tipped me off was a rather spectacular work of abstract art.
Moving on.
He didn't have a lot of information on me or my specific case, so as we are doing the intro chatting and he asks who the recipient is. My answer "I don't know". Conversation on the uniqueness of the situation ensues. Needless to say we skipped the part relating to if I'm being coerced into donating.
First the talk about do think I will have any regrets. If I got really sick in a few years and it was because I only had one kidney, would I regret my decision? No. I wouldn't. And the reason is that would be assuming that my life is worth more than the recipients. From this he asked if I thought my life wasn't worth much, so I clarified. People seem to be able to be rude to complete strangers, but would never treat a friend in the same way; its as though many people view a stranger's life to be worth less because they don't know them. I don't feel that way. Just because I do not know who this person is or what their story is does not mean that they are worth any more or any less than me. I know who I am and what I'm about.
If the doctor were to call my husband and ask him if he wanted the donation stopped, I could honestly say that he would support me 100%. Then he asked me if I wanted him to write a note saying that I am unable to donate due to medical reasons. No. This has come to mean more to me then I thought it would and I would be crushed if I couldn't donate for some reason.
The questions went on like this: "Do you smoke?" "no." "Do you drink?" "On occasion." "Tell me about a time, when you were at your heaviest drinking, how much did you drink?" "I had a 17day bender." "And you were drinking every day?" "Yes." "When was this?" "2007. Started in Amsterdam, had a 5 day road trip to Prague, Vienna and Budapest, back to Amsterdam and finishing with 5 days in London."
Then the questions turned to sleeping and if I ever felt like I didn't need sleep, when I had gone the longest without sleeping (5 years on University, need I say more?) and if i ever felt like I didn't need to sleep. No. I always need sleep.
It was pretty easy to see what his questions were getting at. Do I ever think that someone/something is out to get me. Do I ever feel like I need to repeat an action multiple times because doing it once is not good enough. Do I feel like I can talk to God/the Devil/ a spiritual being. Have I ever been really sad and not able to be happy for a period of time. Have I ever had panic attacks.
The only reason I may do something more than once is because I'm absent minded and can easily forget what time it is although I just checked my watch (and by watch I mean my phone) 30seconds ago. I do believe that everything happens for a reason, we just don't know it yet, but that doesn't mean that I feel as though I am not in control of my own destiny.
It was not as scary as I thought it was going to be. We talked about the meds that I will be on post-op to help with the pain and swelling, and how they may make me prone to panic attacks or depressive symptoms, and how becoming addicted is a real possibility. That was actually good to know, that I should avoid stress and need to be aware of my dose and how my body is reacting.
But, he did say that from his perspective, there was nothing stopping me from donating. Yay! I'm sane!
But far an above how fun it was chatting with my Dr, was the post-evaluation chat where I spied his iPad and he let me touch it. We discussed about how (since I am into classic literature and all the books in the iBook store are classics and free) I should clearly have one to keep me occupied during recovery. I fully agree. He's a Mac nerd, as am I. Always good meeting kindred spirits.
What's left? Review of all the test results, picking which kidney they are going to take, finding a match and finally the surgery. Yay!
This meeting was all about finding out if I had any mental reason that may either prevent me from donating, or, that may have an impact of the post-op.
Here's how it went: Appoint was for 2pm, I was there at 1:30. Needlessly early for sure, but wasn't sure if there was going to be paperwork or anything like that to fill out. There wasn't. Thankfully I came prepared with a book (The Great Gatsby) and waited. 2:05 and the Dr comes out to get me.
He was younger than I anticipated, very well dressed and well spoken. His office was a decent size, not cramped but not overly large. Noticeably absent was a chaise lounge or a couch, or any of the typical furnishing you may expect in a shrink's office. Had I not know what he did, I would not have expected this to be a psychiatrist's office. The only thing that would have tipped me off was a rather spectacular work of abstract art.
Moving on.
He didn't have a lot of information on me or my specific case, so as we are doing the intro chatting and he asks who the recipient is. My answer "I don't know". Conversation on the uniqueness of the situation ensues. Needless to say we skipped the part relating to if I'm being coerced into donating.
First the talk about do think I will have any regrets. If I got really sick in a few years and it was because I only had one kidney, would I regret my decision? No. I wouldn't. And the reason is that would be assuming that my life is worth more than the recipients. From this he asked if I thought my life wasn't worth much, so I clarified. People seem to be able to be rude to complete strangers, but would never treat a friend in the same way; its as though many people view a stranger's life to be worth less because they don't know them. I don't feel that way. Just because I do not know who this person is or what their story is does not mean that they are worth any more or any less than me. I know who I am and what I'm about.
If the doctor were to call my husband and ask him if he wanted the donation stopped, I could honestly say that he would support me 100%. Then he asked me if I wanted him to write a note saying that I am unable to donate due to medical reasons. No. This has come to mean more to me then I thought it would and I would be crushed if I couldn't donate for some reason.
The questions went on like this: "Do you smoke?" "no." "Do you drink?" "On occasion." "Tell me about a time, when you were at your heaviest drinking, how much did you drink?" "I had a 17day bender." "And you were drinking every day?" "Yes." "When was this?" "2007. Started in Amsterdam, had a 5 day road trip to Prague, Vienna and Budapest, back to Amsterdam and finishing with 5 days in London."
Then the questions turned to sleeping and if I ever felt like I didn't need sleep, when I had gone the longest without sleeping (5 years on University, need I say more?) and if i ever felt like I didn't need to sleep. No. I always need sleep.
It was pretty easy to see what his questions were getting at. Do I ever think that someone/something is out to get me. Do I ever feel like I need to repeat an action multiple times because doing it once is not good enough. Do I feel like I can talk to God/the Devil/ a spiritual being. Have I ever been really sad and not able to be happy for a period of time. Have I ever had panic attacks.
The only reason I may do something more than once is because I'm absent minded and can easily forget what time it is although I just checked my watch (and by watch I mean my phone) 30seconds ago. I do believe that everything happens for a reason, we just don't know it yet, but that doesn't mean that I feel as though I am not in control of my own destiny.
It was not as scary as I thought it was going to be. We talked about the meds that I will be on post-op to help with the pain and swelling, and how they may make me prone to panic attacks or depressive symptoms, and how becoming addicted is a real possibility. That was actually good to know, that I should avoid stress and need to be aware of my dose and how my body is reacting.
But, he did say that from his perspective, there was nothing stopping me from donating. Yay! I'm sane!
But far an above how fun it was chatting with my Dr, was the post-evaluation chat where I spied his iPad and he let me touch it. We discussed about how (since I am into classic literature and all the books in the iBook store are classics and free) I should clearly have one to keep me occupied during recovery. I fully agree. He's a Mac nerd, as am I. Always good meeting kindred spirits.
What's left? Review of all the test results, picking which kidney they are going to take, finding a match and finally the surgery. Yay!
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