I got it.
I still can't really wrap my head around it, but I got it. I got a transplant of my pancreas and kidney.
I got the call Saturday afternoon/evening (January 19, 2019). They said the normal things they say; we have some organs, have you been sick, come down to the hospital around 6:00 or 7:00 this evening and we'll start the work up. So we took Trace (my 10 year old step-son) to his friends for a sleepover and went to the hospital. I was certain this was another false alarm. Maybe that was just my way of trying to protect myself emotionally from this crazy rollercoaster ride I've been on, but there are times I've gotten called that it felt like it could really be happening and this just wasn't one of those times. So we went in. We got the X-rays and the EKG and put an IV in. Did all the normal stuff. Then we spent the night. My husband Devon and I slept there that night, feeling sure we'd be sent home the next day, then my parents got there the next morning to keep us company. And we just waited. Played some card games, watched the football game, chatted, just kind of killed the time. We were there all day. At around 4:00 pm, Devon left to get some dinner and just a couple minutes after he left the nurse came in and said "surgery is on their way up to get you"
"WHAT?!
What did you just say?
I thought you were coming to tell me to go home, this one isn't the one"
But it was/is the one.
And surgery was on their way up to get me so they could completely change my whole life
We called Devon "Get back here! She's going into surgery"
He came back. Surgery came and wheeled me in my bed down to the surgical floor and I got a couple new organs. I went into surgery on Sunday, January 20, 2019 at around 5:30 pm (I think the first hours were prep stuff, I seem to remember hearing the actual surgery part started around 7:00 pm, but I don't actually know...I was a bit too drugged up to remember) and got out of surgery Monday, January 21, at around 1:00 am. Six hours to install two organs, remove my appendix and my dialysis cathader. Six hours for a new scar that runs the entire length of my torso, brest plate to pelvic bone. I couldn't be more happy about that damn scar.
I was in ICU for 3 days, I can vaguely remember some of that stuff. I was SO thirsty and they kept giving me this pink sponge on a stick I was calling lollipops.
"Can I please have another lollipop?"
Those damn things saved me! I've never had such a dry mouth in my entire life. I couldn't breath from it. After ICU, they moved me back to T-10. The Transplant floor. And that's where I stayed for nearly 3 more weeks. I ended up being in the hospital for a total of 23 days.
They almost sent me home after about a week, but I got a rare form of nodule pneumonia which kind of got scary so I stayed much longer and did a LOT of tests to make sure I was going to stay nice and healthy for a long time (knock wood).
My new organs are working great. The steroids I'm on are making my blood sugars run just a little high from time to time, which of course has me a bit nervous, but the doctors don't seem to be too worried and are keeping an eye on it so hopefully that keeps getting better.
I'm home now and feeling great. I get so tired so easily and they said I'll continue to do that for months still. I'm out of work for at least 3 months (till end of April, tentatively)
So now, I'm just healing.
Life is so amazing!
Sunday, February 17, 2019
Thursday, December 13, 2018
Potential Donor #5
12/7/18
I didn't get it.
The pancreas wouldn't flush.
That may be all that I can write about it today.
I'm pretty bummed.
:(
I didn't get it.
The pancreas wouldn't flush.
That may be all that I can write about it today.
I'm pretty bummed.
:(
Monday, September 24, 2018
Potential Donor #4
I got call number 4 for a transplant. It was on Thursday morning, 9/20/18. I really had a feeling that this one was the one, which made it that much harder when it turned out not to be.
They called me at around 6:30 in the morning. The first time my phone rang I was sound asleep and thought it was my alarm going off so I pushed the "snooze" button (which just declined the call). They called back about 10 minutes later though and I was still asleep, but alert enough this time to realize that it was the phone, not the alarm.
The nurse told me when I spoke to her to eat breakfast and take my morning medications, but then don't eat or drink anything after that and wait for their call. I decided to go into work so I could wrap up some things and get ready to be out of the office for a few months since, like I said before, I was sure that this was the one.
They finally called me back around 2:00 or 2:30 and told me to come into the hospital. So after going home to pack a quick overnight bag, I went in. Everything happened so fast once I got there. The blood draw, the chest x-ray, the EKG, getting the stupid IV put in (which was hard since they couldn't get my veins to cooperate...man my arms are bruised up now!), it was all done within the first hour of getting there instead of over the span of several hours which has been the case in the past. I brought up the bowel prep and how it gave me peritonitis last time so the nurse discussed it with the doctor, and they decided they would just skip that prep all together so as to not risk another infection. They said if they needed to they would just do a little...um...cleaning out, while they were in surgery. It's kind of funny, I totally pictured myself laying on an operating table all cut open and the doctor calling somebody in who was sporting a garden hose with a nozzle on the end of it to spray me down cause they needed to do a little...cleaning out. I'm sure that's probably how it works. ha ha!
So, all the testing and check in stuff was done which means Mom and I had nothing to do but wait (Devon went into work that day too to get done all he could during the waiting portion of all this and therefore be there during the surgery part). So we waited. And waited. And waited. Until about 9:00 PM. At that time, Devon was down in the parking lot, finishing eating his dinner before he came up (remember, I'd been fasting all day. I didn't want to smell or see food, I was HUNGRY!) which is when the doctor (or was it the nurse...I can't remember now) came in and told us the valves (I think...) on the pancreas were too small. I wasn't going to get a transplant today.
As I said before, I felt so certain that this time was going to be it, so it really hit me hard. I think this is the first time this has happened (the call in, just to be eventually sent home) when I felt the disappointment on a level you would assume...I don't know if that makes sense. I'll try to explain: every time I've gone in, I've done so with the thought in my head that "the transplant team warned me before this all started that I'll get called and have to go home a couple times before the transplant actually happens" and "the pancreas is a finicky organ and I want the best one possible so if the doctor says it's not this one, that's OK" so as to not get my hopes up too high and therefore not be too disappointed. So every time I've gone in, people kind of tip-toe so to speak around me, afterward, assuming I'll be super bummed that it didn't happen. I am super bummed, of course, but my expectations were low, so the letdown wasn't too bad. This time I let my expectations soar, so the letdown was finally on the level that those tip-toeing people have assumed all the time.
It'll happen....
Someday....
They called me at around 6:30 in the morning. The first time my phone rang I was sound asleep and thought it was my alarm going off so I pushed the "snooze" button (which just declined the call). They called back about 10 minutes later though and I was still asleep, but alert enough this time to realize that it was the phone, not the alarm.
The nurse told me when I spoke to her to eat breakfast and take my morning medications, but then don't eat or drink anything after that and wait for their call. I decided to go into work so I could wrap up some things and get ready to be out of the office for a few months since, like I said before, I was sure that this was the one.
They finally called me back around 2:00 or 2:30 and told me to come into the hospital. So after going home to pack a quick overnight bag, I went in. Everything happened so fast once I got there. The blood draw, the chest x-ray, the EKG, getting the stupid IV put in (which was hard since they couldn't get my veins to cooperate...man my arms are bruised up now!), it was all done within the first hour of getting there instead of over the span of several hours which has been the case in the past. I brought up the bowel prep and how it gave me peritonitis last time so the nurse discussed it with the doctor, and they decided they would just skip that prep all together so as to not risk another infection. They said if they needed to they would just do a little...um...cleaning out, while they were in surgery. It's kind of funny, I totally pictured myself laying on an operating table all cut open and the doctor calling somebody in who was sporting a garden hose with a nozzle on the end of it to spray me down cause they needed to do a little...cleaning out. I'm sure that's probably how it works. ha ha!
So, all the testing and check in stuff was done which means Mom and I had nothing to do but wait (Devon went into work that day too to get done all he could during the waiting portion of all this and therefore be there during the surgery part). So we waited. And waited. And waited. Until about 9:00 PM. At that time, Devon was down in the parking lot, finishing eating his dinner before he came up (remember, I'd been fasting all day. I didn't want to smell or see food, I was HUNGRY!) which is when the doctor (or was it the nurse...I can't remember now) came in and told us the valves (I think...) on the pancreas were too small. I wasn't going to get a transplant today.
As I said before, I felt so certain that this time was going to be it, so it really hit me hard. I think this is the first time this has happened (the call in, just to be eventually sent home) when I felt the disappointment on a level you would assume...I don't know if that makes sense. I'll try to explain: every time I've gone in, I've done so with the thought in my head that "the transplant team warned me before this all started that I'll get called and have to go home a couple times before the transplant actually happens" and "the pancreas is a finicky organ and I want the best one possible so if the doctor says it's not this one, that's OK" so as to not get my hopes up too high and therefore not be too disappointed. So every time I've gone in, people kind of tip-toe so to speak around me, afterward, assuming I'll be super bummed that it didn't happen. I am super bummed, of course, but my expectations were low, so the letdown wasn't too bad. This time I let my expectations soar, so the letdown was finally on the level that those tip-toeing people have assumed all the time.
It'll happen....
Someday....
Wednesday, September 19, 2018
Potential Donor #3
...this is a pretty dull story.
They (the transplant team) called me last Sunday around 2:00 pm to say they found another match and just wanted to check that I was in town and not feeling ill in any way. When I told them I was in town and not sick they told me to keep my phone nearby, they'd call back later. Then they called back around 8:00 pm to tell me that lab tests on the pancreas didn't look good so they were going to decline the organs before I even came in. At least I didn't have to spend the day needlessly at the hospital :)
They (the transplant team) called me last Sunday around 2:00 pm to say they found another match and just wanted to check that I was in town and not feeling ill in any way. When I told them I was in town and not sick they told me to keep my phone nearby, they'd call back later. Then they called back around 8:00 pm to tell me that lab tests on the pancreas didn't look good so they were going to decline the organs before I even came in. At least I didn't have to spend the day needlessly at the hospital :)
Monday, August 6, 2018
Well, That Didn't Go Well
The potential donor number 2 story? OK, here it is:
So I get the call Thursday afternoon at work that there were some possible organs for me and to wait for their call. Thursday at about 11:45 PM they finally call me back and tell me everything is looking like a go, they want me to start fasting at midnight (in fifteen mins) and to come into the hospital by 7:00 the next morning to start the prep for surgery. We had eaten dinner late, I'd say at about 8:00 PM so I didn't eat anything else, just laid in bed and tried unsuccessfully to get some sleep.
The next morning we went to the hospital. Did the standard transplant surgery prep stuff: chest x-ray, EKG, bowel prep, signed consent forms, placed the I.V., etc, etc
Wait: Lets go back to the bowel prep. They explained to me that its similar to the bowel prep when doing a colonoscopy, except more intense. You have to keep in mind that when they do find me a pancreas, they will need to sew it to my bowel, so I've gotta be all cleaned out, not just mostly cleaned out. It wasn't fun.
So we waited. We played cards. We stared at our phones. I mostly napped since I didn't get much sleep the night before and was exhausted also from a combination of the fasting since 8 PM the night before, and the bowel prep. I was starving! They kept coming in to give us updates, but those updates were really just to tell us that they didn't have an update yet. They said they don't know yet when the organs would be harvested so they couldn't tell me when my potential surgery would be either. They told us that one donor could potentially save up to 9 lives so there is often some scheduling difficulties with other transplant surgeons, plus its hard to predict or know when the family will be ready and finished saying their goodbyes to the donor who, at this point is often just being kept alive with the help of machines. Its a lot.
So we waited.
Oh, side story:
Trace (my 9 year old step-son) did the sweetest thing. The doctor came in and told us they don't know anything yet, surgery could be late tonight, or maybe even tomorrow, we'll keep you posted. When she left, Trace turned to me and said "So the surgery might not be until tomorrow?"
"That's right buddy, we'll just have to wait and see what they tell us."
"Well, if its not until tomorrow, what are we going to do about your dialysis?"
He was concerned cause I didn't bring any of my dialysis equipment with me and I typically hook up overnight. He was ready to make a plan and put it into action to make sure I was feeling as good as possible. Don't I have the most amazing kid ever?!! My heart just melted at his concern for me!
Anyway, that's the end of the side story, back to the main story:
The surgeon finally came into my room again around 9:30 or 10:00 that evening and told me that the pancreas doesn't look well enough, they don't want to transplant it. Not happening this time.
That was fine. I knew that could (and likely would) happen and I wasn't too bummed. I mean, I was bummed, of course, but it wasn't earth shattering or overly depressing. I want to wait for the healthiest looking organs ever anyway, right?
So I ate a banana, gathered my things, was discharged and went home. Since it was so late, I was so tired, and I hadn't done the prep yet to hook up for dialysis I just didn't bother. I went to bed and figured I'd do it the next day.
The next day, I was still having some intense cramping, I assumed from the bowel prep...I'm telling you guys, that stuff is no fun at all. And I was still feeling completely wiped out. Understandable, I thought. It had been an emotional roller-coaster of a day. Luckily I didn't have anything planned so I could just take it easy. It wasn't until I hooked up to dialysis that night that I realized something else was wrong. It was the most painful initial drain I had ever felt. I've had some slight discomfort before with dialysis, but never anything like this. I turned the lights back on and looked at the fluid that was coming from my catheter. It looked like puss. SO disgusting! I unhooked and called the on-call nurse from my dialysis center. I had peritonitis. A very scary and serious infection of the peritoneum (that sack type thing that houses all your organs). People are usually so sick when they get peritonitis that they are hospitalized. They have damage to their liver and/or other organs. They die. This is serious shit.
They got me on some antibiotics that I put directly into my peritoneum, and did a bunch of tests. I slept for a week. I am finally feeling a bit better, and went back to work today, but this thing kicked my ass! They said based on the tests they did, that it looks like this came from the bowel prep. Stupid bowel prep!
So that's the story of attempt number 2. It's really not my favorite story. It was pretty dumb.
So I get the call Thursday afternoon at work that there were some possible organs for me and to wait for their call. Thursday at about 11:45 PM they finally call me back and tell me everything is looking like a go, they want me to start fasting at midnight (in fifteen mins) and to come into the hospital by 7:00 the next morning to start the prep for surgery. We had eaten dinner late, I'd say at about 8:00 PM so I didn't eat anything else, just laid in bed and tried unsuccessfully to get some sleep.
The next morning we went to the hospital. Did the standard transplant surgery prep stuff: chest x-ray, EKG, bowel prep, signed consent forms, placed the I.V., etc, etc
Wait: Lets go back to the bowel prep. They explained to me that its similar to the bowel prep when doing a colonoscopy, except more intense. You have to keep in mind that when they do find me a pancreas, they will need to sew it to my bowel, so I've gotta be all cleaned out, not just mostly cleaned out. It wasn't fun.
So we waited. We played cards. We stared at our phones. I mostly napped since I didn't get much sleep the night before and was exhausted also from a combination of the fasting since 8 PM the night before, and the bowel prep. I was starving! They kept coming in to give us updates, but those updates were really just to tell us that they didn't have an update yet. They said they don't know yet when the organs would be harvested so they couldn't tell me when my potential surgery would be either. They told us that one donor could potentially save up to 9 lives so there is often some scheduling difficulties with other transplant surgeons, plus its hard to predict or know when the family will be ready and finished saying their goodbyes to the donor who, at this point is often just being kept alive with the help of machines. Its a lot.
So we waited.
Oh, side story:
Trace (my 9 year old step-son) did the sweetest thing. The doctor came in and told us they don't know anything yet, surgery could be late tonight, or maybe even tomorrow, we'll keep you posted. When she left, Trace turned to me and said "So the surgery might not be until tomorrow?"
"That's right buddy, we'll just have to wait and see what they tell us."
"Well, if its not until tomorrow, what are we going to do about your dialysis?"
He was concerned cause I didn't bring any of my dialysis equipment with me and I typically hook up overnight. He was ready to make a plan and put it into action to make sure I was feeling as good as possible. Don't I have the most amazing kid ever?!! My heart just melted at his concern for me!
Anyway, that's the end of the side story, back to the main story:
The surgeon finally came into my room again around 9:30 or 10:00 that evening and told me that the pancreas doesn't look well enough, they don't want to transplant it. Not happening this time.
That was fine. I knew that could (and likely would) happen and I wasn't too bummed. I mean, I was bummed, of course, but it wasn't earth shattering or overly depressing. I want to wait for the healthiest looking organs ever anyway, right?
So I ate a banana, gathered my things, was discharged and went home. Since it was so late, I was so tired, and I hadn't done the prep yet to hook up for dialysis I just didn't bother. I went to bed and figured I'd do it the next day.
The next day, I was still having some intense cramping, I assumed from the bowel prep...I'm telling you guys, that stuff is no fun at all. And I was still feeling completely wiped out. Understandable, I thought. It had been an emotional roller-coaster of a day. Luckily I didn't have anything planned so I could just take it easy. It wasn't until I hooked up to dialysis that night that I realized something else was wrong. It was the most painful initial drain I had ever felt. I've had some slight discomfort before with dialysis, but never anything like this. I turned the lights back on and looked at the fluid that was coming from my catheter. It looked like puss. SO disgusting! I unhooked and called the on-call nurse from my dialysis center. I had peritonitis. A very scary and serious infection of the peritoneum (that sack type thing that houses all your organs). People are usually so sick when they get peritonitis that they are hospitalized. They have damage to their liver and/or other organs. They die. This is serious shit.
They got me on some antibiotics that I put directly into my peritoneum, and did a bunch of tests. I slept for a week. I am finally feeling a bit better, and went back to work today, but this thing kicked my ass! They said based on the tests they did, that it looks like this came from the bowel prep. Stupid bowel prep!
So that's the story of attempt number 2. It's really not my favorite story. It was pretty dumb.
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!
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