as time moves closer to november 21 i become more and more anxious and sincerely terrified. if you know me well you know that i am not terrified for the surgery as much as i am about who is going to make sure barkley feels safe and comfortable during the time i am in the hospital and mainly cory - how he's going to feel, what if my kidney doesn't like its new home in cory's body and mostly stressed because i want the process to be documented by photographs. maria is one of my dearest friends and she came to me last week knowing that this was probably the most important part to me - to have documentation artistically so that i could look back on it, share, and most importantly plaster the photographs all over every social network to make sure everyone who ever cared, wondered, worried, cried, laughed, loved, or learned from cory's journey - they too could be there in spirit. she knew this - she almost had me crying when she asked if that could be her duty. and i happily said yes.
the more and more i think about it all and the journey we are about to bring to an end, the more and more in love i feel. which - is a nice feeling. especially after this past weekend, seeing cory celebrate with friends but not to the extent he used to be able to. going to sleep early, not having the energy to stay out and DEFINITELY not having any capability of holding alcohol. this is reality - cory is sick. tomorrow he turns 30 - i remember last october 23 being quite different but in a way, it isn't sad, sure maybe a little because he has his diagnoses but mostly it's full of love, lots of love and family, feelings of hope and faith but also acceptance and a positive attitude that things can only go up from here.
we are moving to a larger place this weekend to make room for our own little family as well as all of the family who will be graciously staying with us, visiting us, helping out with this monumental surgery. i keep trying to tell myself that everything doesn't have to be perfect, everything doesn't have to be put together, they are coming to make sure we are taken care of and for that i appreciate the opportunity to move and to allow for the home to grow so we can fit all of our loved ones in.
the amount of love pouring in and all of the kind words and generous donations has humbled me and the experience. i am so happy to do this for cory - there has never been a day where i have questioned my decision or wished i could take it back. i want him to be ok - so that we can move on. so we can live as normally as God will let us and hopefully he will be able to enjoy my kidney for 30+ years. it is quite a big deal, i am aware and complications can occur but i have one good thing going for me - that would be the thought of my grandma looking down on me from heaven - knowing that she would have done the same thing for my grandpa - no matter what anyone said, she would have agreed with my decision.
i'm sorry to put you on the spot mom but my mom since the beginning has been a true mother. she has been worried and questioned my decision not because she doesn't love cory but because she created me, she created both of my kidneys and she felt as a mother, they were put there for a reason and she wanted me to at least look at both sides, basically telling me to sit back and study my options - which i have a hard time doing in any situation. i remember sitting in the car with my mom and telling her that i understood her opinion, i understood why she was scared and mostly i loved her for caring. i also took the time to tell both my mom and dad that they were half of the reason why i was willing to give an organ to cory. in my past there have been times where i have taken a selfish road, as most can relate to, but in the past year i have lived for cory, putting myself second, which i have been okay with, because my mom and dad raised me like that. they always put me first, they put our family first and they were successfully able to raise two bright, giving, caring, loving and generous girls that were willing to do things like donate an organ, raise a family of 6 like my sister, and just live in the moment and love with your entire heart, no matter if they were aware of how much or how little. last week cory took the opportunity without my knowledge, to call my mom and just answer any questions or concerns she may have had about the surgery or how he felt about me and what would be happening with us as a couple in the future. i was elated to hear that he did this, 1. because he isn't that guy - who is emotional and willing to make phone calls to parents to have an in depth conversation about organ donation (i don't blame him) - it was helpful. and 2. it's nice to hear that he sees the need for everyone to be ok - for everyone to be behind the situation, this creates less tension in all of us. my mom is supportive, always has been but now she is supportive because she knows the whole story, she knows that cory will take care of me forever and knows that i am in good hands - even with one kidney.
i guess this is me just typing - trying to get all of the information out of my brain in the next month.
i am nervous.
if you are reading this and have gone through a transplant - i'd love to hear from you, good or bad.
i like to know what to expect.
for all loved ones, our transplant is on november 21 - we hope to see you all there or just have you thinking of us on that day.
it's a big deal. i am so proud of cory for keeping his head up so high this past year after all he has been through.
proud to call him my guy.
Monday, October 22, 2012
Thursday, October 4, 2012
My Journey Slightly Modified for Length
Today happens to be the day after learning that I am able to give Cory my kidney. The outpouring of love and support has been so great - it helps to cement my decision with so much love and respect backing my decision.
I have read up on quite a few case studies and general information on living donors and I think the most powerful thing I have really been able to relate to is the example of one man giving his kidney to his sister. He said at the beginning of the interview, "Everyone constantly commends my choice to give my sister a kidney but in reality it was never a question as to whether or not I would, it was more like when can we."I felt the same way. He went into the emergency room and once we realized there was no close family member that could give him the gift of life, I began my journey to become a donor.
I thought I would take a moment to explain my journey:
I went in beginning in July to get the first few tests done, the first appointment is with the nephrologist (kidney doctor), she tells you of all of the risks and general information surrounding the procedure. She then gave me an overall physical. When she felt around in my neck she found a cyst on my thyroid. She had asked if I had ever had it looked at, I replied no. My blood pressure was high when I entered so she retook it, still in the 130's which was not normal for me (probably nervous from the physical). I then was referred to medical specialties to get my cyst looked at.
The second test (while waiting for my cyst work up) that you go through consists of you (and Cory in this case he was my hospital buddy) peeing every hour on the hour, if you do not - you have to come back and start over. You have a catheter in all day and they take your blood on the hour as well. This is to research the function of your kidneys. I was also given a radio active shot to better test the functionality. I was deemed radio active for the next 28 days! To end my day I was given an ultrasound of my neck to see if my cyst was cancerous. My grandmother died of lymphatic cancer, the thought of having a similar cancer was devastating, especially so young.
The third test is the worst, I was without Cory, he was on vacation and I had to get up extremely early and be at UW all day long. First test was a 25 tube blood draw. It covered every blood born illness possible, along with my cholesterol and other tests pertinent to kidney function and my overall health. Next was a cardio graph, to see my heart function. Last I fed an IV full of dye to see the size and functionality of my kidneys. This was entirely too painful. I went through a CT scan with the IV in, which was uncomfortable but even worse, when they pushed the dye through my body it warmed certain areas in my body, basically it felt like I peed my pants a dozen times. It was the first time I lost my composure. The entire time I was strong and knew in my heart everything would be ok but this time, I was just too full of emotion and just wanted it all to be over. That was the first time I ever showed any sign of being anything but brave.
I was then sent home with a heart rate monitor due to my off blood pressure during my first appointment. It was the most painful thing - 24 hours with a cuff on. It would take my blood pressure every 2 minutes on the dot. I took it off half way through it was so unbearable.
Finally not even a month ago I had to go into Harborview for a fine needle biopsy of my neck. Now, Harborview is a teaching hospital and I received one of the worst procedures I have ever experienced. The proceedure is supposed to take a very long needle and poke it into your neck up into the cyst to take several biopsies using an ultra sound. The doctor who was learning how to do the proceedure did not give me enough lytocane and I could feel the entire thing. The biopsy was to take only 20 minutes, I was in there for an hour.
I then received the results back from my biopsy saying that there was no sign of cancer and Tuesday our case went before the transplant board. They had no reason to believe I was a bad candidate and granted us the surgery.
It took over three months to finish the process - a process I never thought would end but here we are!
I have read up on quite a few case studies and general information on living donors and I think the most powerful thing I have really been able to relate to is the example of one man giving his kidney to his sister. He said at the beginning of the interview, "Everyone constantly commends my choice to give my sister a kidney but in reality it was never a question as to whether or not I would, it was more like when can we."I felt the same way. He went into the emergency room and once we realized there was no close family member that could give him the gift of life, I began my journey to become a donor.
I thought I would take a moment to explain my journey:
I went in beginning in July to get the first few tests done, the first appointment is with the nephrologist (kidney doctor), she tells you of all of the risks and general information surrounding the procedure. She then gave me an overall physical. When she felt around in my neck she found a cyst on my thyroid. She had asked if I had ever had it looked at, I replied no. My blood pressure was high when I entered so she retook it, still in the 130's which was not normal for me (probably nervous from the physical). I then was referred to medical specialties to get my cyst looked at.
The second test (while waiting for my cyst work up) that you go through consists of you (and Cory in this case he was my hospital buddy) peeing every hour on the hour, if you do not - you have to come back and start over. You have a catheter in all day and they take your blood on the hour as well. This is to research the function of your kidneys. I was also given a radio active shot to better test the functionality. I was deemed radio active for the next 28 days! To end my day I was given an ultrasound of my neck to see if my cyst was cancerous. My grandmother died of lymphatic cancer, the thought of having a similar cancer was devastating, especially so young.
The third test is the worst, I was without Cory, he was on vacation and I had to get up extremely early and be at UW all day long. First test was a 25 tube blood draw. It covered every blood born illness possible, along with my cholesterol and other tests pertinent to kidney function and my overall health. Next was a cardio graph, to see my heart function. Last I fed an IV full of dye to see the size and functionality of my kidneys. This was entirely too painful. I went through a CT scan with the IV in, which was uncomfortable but even worse, when they pushed the dye through my body it warmed certain areas in my body, basically it felt like I peed my pants a dozen times. It was the first time I lost my composure. The entire time I was strong and knew in my heart everything would be ok but this time, I was just too full of emotion and just wanted it all to be over. That was the first time I ever showed any sign of being anything but brave.
I was then sent home with a heart rate monitor due to my off blood pressure during my first appointment. It was the most painful thing - 24 hours with a cuff on. It would take my blood pressure every 2 minutes on the dot. I took it off half way through it was so unbearable.
Finally not even a month ago I had to go into Harborview for a fine needle biopsy of my neck. Now, Harborview is a teaching hospital and I received one of the worst procedures I have ever experienced. The proceedure is supposed to take a very long needle and poke it into your neck up into the cyst to take several biopsies using an ultra sound. The doctor who was learning how to do the proceedure did not give me enough lytocane and I could feel the entire thing. The biopsy was to take only 20 minutes, I was in there for an hour.
I then received the results back from my biopsy saying that there was no sign of cancer and Tuesday our case went before the transplant board. They had no reason to believe I was a bad candidate and granted us the surgery.
It took over three months to finish the process - a process I never thought would end but here we are!
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