Thursday, July 26, 2018
Potential Donor #2
I just got a call from the transplant team saying I'm number one on the list for a kidney and pancreas they just got. They should know by tomorrow if the organs are viable...keep those fingers crossed for me!
Monday, July 16, 2018
The First Potential Donor
I got a call on Friday from the transplant team. They said that there was a potential donor for me and that I should go home, pack my toothbrush, and get my little butt over to the hospital. So I did.
Now let me just preface the rest of this story with some information. When I was going through the process of getting set up on the transplant list, they warned me that this was going to happen from time to time. That I'd get a call saying that I was number 2 or 3 in line waiting for a particular set of organs so I would need to go to the hospital so that I'm there and ready in case the first two (or however many) matches don't work out. So I was cautiously excited and hopeful. Thinking there was no way I was actually going to have a transplant surgery this weekend. But they didn't say that I was number 2 on the list They said that if the organs look good when the surgeon goes to harvest them, they will be going into my body. A new kidney and a new pancreas. They were going to be mine. I was going to be healthy again. And everyone I talked to seemed so certain that it was happening. They showed me to my hospital room. They did the chest x-rays. They did the EKG. They explained everything that could go wrong with a surgery this big and had me sign the scary consent forms. They scheduled surgery for 6 am Saturday morning. I was in my room and ready to go...or as much as I could be ready for a major, somewhat scary surgery like that.
But then the call came. The donor was found to have Spinal Meningitis aka West Nile Virus. The doctor told me that 100% of recipients who received a transplant from a donor that had Meningitis have died within 10 days of their surgery. So needless to say, I didn't get a transplant. Of course I'm bummed. But at the same time, it seemed too fast. Too good to be true. There are people who have waited YEARS on the transplant list, and I'd been on it for less than a week, it almost didn't seem fair. It was a good trial run for us. Next time I'll know to be even more cautious with my excitement. But I think I'll keep my hopefulness going strong. They called me once, they'll call me again. One day I'll get some fresh, healthy organs. That day is going to be so amazing!
Now let me just preface the rest of this story with some information. When I was going through the process of getting set up on the transplant list, they warned me that this was going to happen from time to time. That I'd get a call saying that I was number 2 or 3 in line waiting for a particular set of organs so I would need to go to the hospital so that I'm there and ready in case the first two (or however many) matches don't work out. So I was cautiously excited and hopeful. Thinking there was no way I was actually going to have a transplant surgery this weekend. But they didn't say that I was number 2 on the list They said that if the organs look good when the surgeon goes to harvest them, they will be going into my body. A new kidney and a new pancreas. They were going to be mine. I was going to be healthy again. And everyone I talked to seemed so certain that it was happening. They showed me to my hospital room. They did the chest x-rays. They did the EKG. They explained everything that could go wrong with a surgery this big and had me sign the scary consent forms. They scheduled surgery for 6 am Saturday morning. I was in my room and ready to go...or as much as I could be ready for a major, somewhat scary surgery like that.
But then the call came. The donor was found to have Spinal Meningitis aka West Nile Virus. The doctor told me that 100% of recipients who received a transplant from a donor that had Meningitis have died within 10 days of their surgery. So needless to say, I didn't get a transplant. Of course I'm bummed. But at the same time, it seemed too fast. Too good to be true. There are people who have waited YEARS on the transplant list, and I'd been on it for less than a week, it almost didn't seem fair. It was a good trial run for us. Next time I'll know to be even more cautious with my excitement. But I think I'll keep my hopefulness going strong. They called me once, they'll call me again. One day I'll get some fresh, healthy organs. That day is going to be so amazing!
Tuesday, July 10, 2018
The List
I got a call yesterday.
It was from Amy who is part of the Transplant Team.
She said that as soon as she clicks the little button on her computer I will officially be added to the transplant list.
Then she clicked the little button.
I was just sitting at my desk at work.
And then I started bawling.
I hadn't realized how many hoops there are to jump through and the emotional roller coaster ride that comes with getting put on the transplant list! But here I am. On the list. I started the process of being added to the list back in February. And six months later, I'm on it. It is still kind of blowing my mind.
They said the wait for SPK (Simultaneous Pancreas-Kidney Transplantation) is usually anywhere from 6 months to 2 years, but I'm on the list now, so technically I could get a call any time and they could tell me that they have some organs for me. Wow!
Up until now, I hadn't posted anything on social media about any of this kidney stuff. Partly cause I didn't want to feel like I was being all "Hey guys, this is what's up with me, give me your pity now". But I thought this might be a good time to share the news with my Facebook world since it could be a positive and hopeful type of post, instead of a "please feel sorry for me" type of post and so I did. I think it's a pretty good post. I can't believe the outpouring of positive comments and support that I've gotten. It makes me really glad that I decided to share. I'm feeling pretty great!
This is what I wrote:
It was from Amy who is part of the Transplant Team.
She said that as soon as she clicks the little button on her computer I will officially be added to the transplant list.
Then she clicked the little button.
I was just sitting at my desk at work.
And then I started bawling.
I hadn't realized how many hoops there are to jump through and the emotional roller coaster ride that comes with getting put on the transplant list! But here I am. On the list. I started the process of being added to the list back in February. And six months later, I'm on it. It is still kind of blowing my mind.
They said the wait for SPK (Simultaneous Pancreas-Kidney Transplantation) is usually anywhere from 6 months to 2 years, but I'm on the list now, so technically I could get a call any time and they could tell me that they have some organs for me. Wow!
Up until now, I hadn't posted anything on social media about any of this kidney stuff. Partly cause I didn't want to feel like I was being all "Hey guys, this is what's up with me, give me your pity now". But I thought this might be a good time to share the news with my Facebook world since it could be a positive and hopeful type of post, instead of a "please feel sorry for me" type of post and so I did. I think it's a pretty good post. I can't believe the outpouring of positive comments and support that I've gotten. It makes me really glad that I decided to share. I'm feeling pretty great!
This is what I wrote:
feeling hopeful.
Something huge happened today.
Some of you may know, but many don’t that about 8 months ago I was told that my kidneys are no longer working. I have End Stage Renal Disease. Since then I’ve (with the help of the BEST and most supportive group of people a girl could ever ask for) been fighting my little butt off to try and remain as healthy as possible. I started kidney dialysis a couple of months ago and have been jumping through lots, and lots of hoops to get myself on that damn transplant list.
That’s the huge thing that happened today. I just got a call from the transplant team that my name has officially been put on the list to receive a brand new (well, technically used…but new to me
😊) kidney and pancreas! I’M ON THE LIST!!
…let the waiting begin
#onestepcloser #iwillsurvivethis #fightlikehell
Some of you may know, but many don’t that about 8 months ago I was told that my kidneys are no longer working. I have End Stage Renal Disease. Since then I’ve (with the help of the BEST and most supportive group of people a girl could ever ask for) been fighting my little butt off to try and remain as healthy as possible. I started kidney dialysis a couple of months ago and have been jumping through lots, and lots of hoops to get myself on that damn transplant list.
That’s the huge thing that happened today. I just got a call from the transplant team that my name has officially been put on the list to receive a brand new (well, technically used…but new to me
😊) kidney and pancreas! I’M ON THE LIST!!…let the waiting begin
#onestepcloser #iwillsurvivethis #fightlikehell
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