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.
:(
Thursday, December 13, 2018
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!
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
Friday, April 27, 2018
My kidneys (and maybe my heart) are down to 10% functionality
I’m feeling...ugly lately. Not physically ugly, but emotionally. I like to think of myself as an intelligent person. Someone who realizes that everyone has their own problems and issues in this world and just because one persons problems seem big, that doesn’t diminish or minimize another persons. However, even in knowing that to be true I can’t seem to stop myself from being bitter toward so many other peoples situations. Social media is what is bringing out this realization in me. I’ll read a post on Facebook from someone about their bad day or their stress and think bitterly to myself “you have no idea!” An example, you say? Alight, here’s one: a woman is pregnant and is complaining on FB about her swollen feet. My thought immediately is, “well at least your swollen feet will go away in X number of months and you get a new baby out of the deal. My swollen feet are cause I gave in and had a cup of coffee today and I’m stuck with my problem for life. AND I likely will never get to have a baby so you and your problems suck!”
I am a compassionate person. I am good at being empathetic. This damn ESRD seems to have taken that from me and I hate it about myself right now. I’m sure there are people who would say to me “well, you’re going through a lot, your aloud to feel a little bitter.” But my having kidney decease doesn’t take away from the fact that the woman in the example has a couple of young kids she is chasing around already and she is tired and worn out from being pregnant and swollen feet DO suck. Everybody has their stresses and their hard times and my own don’t make theirs any less important or real. Why do I have to compare these things? Where did my compassion go? I hate feeling this way. I don’t want to be a lesser person because of bitter feelings toward my disease. But even in knowing all that, even in recognizing that it’s something I’m doing and something I dislike about myself right now I can’t stop from doing it. I read some post that says “lots of stress in my life right now, please send good vibes my way” and think to myself that person has no idea what stress even is. So how do I change that? How do I get my compassion back? How do I stop feeling so damn sorry for myself and start being grateful that there are ways to treat the disease I have? I don’t want to feel gross about the person that I am. I don’t want this bitterness to consume and control me. I don’t want the size of my heart to somehow be in correlation with the functioning level of my kidneys.
I am a compassionate person. I am good at being empathetic. This damn ESRD seems to have taken that from me and I hate it about myself right now. I’m sure there are people who would say to me “well, you’re going through a lot, your aloud to feel a little bitter.” But my having kidney decease doesn’t take away from the fact that the woman in the example has a couple of young kids she is chasing around already and she is tired and worn out from being pregnant and swollen feet DO suck. Everybody has their stresses and their hard times and my own don’t make theirs any less important or real. Why do I have to compare these things? Where did my compassion go? I hate feeling this way. I don’t want to be a lesser person because of bitter feelings toward my disease. But even in knowing all that, even in recognizing that it’s something I’m doing and something I dislike about myself right now I can’t stop from doing it. I read some post that says “lots of stress in my life right now, please send good vibes my way” and think to myself that person has no idea what stress even is. So how do I change that? How do I get my compassion back? How do I stop feeling so damn sorry for myself and start being grateful that there are ways to treat the disease I have? I don’t want to feel gross about the person that I am. I don’t want this bitterness to consume and control me. I don’t want the size of my heart to somehow be in correlation with the functioning level of my kidneys.
Friday, March 30, 2018
Dialysis: The Time Has Come
I saw my doctor yesterday. She told me that my kidney function has dropped again and is now at about 11%. I told her about how my symptoms are currently: exhausted all the time, nausea, sore and achy, no appetite, lots of swelling and weight gain from the fluid retention, headaches....
She thinks that it is time to start dialysis. I thought I'd be more nervous than I am. Don't get me wrong, I'm nervous as hell, but I'm also feeling absolutely awful lately and the idea that I might feel even just a little bit better is a really hopeful thought.
She (my Nephrologist...which is a kidney specialist if you didn't know) wants to try Peritoneal Dialysis (PD) first. Basically, I will fill my peritoneal cavity (think of it as a kind of stomach lining) with the dialysate solution which will draw all the waste and extra water to it, then I'll drain the dialysate which will get rid of all that extra stuff in my body that my kidneys aren't filtering out since they don't work well. There are two different ways of doing this exchange. Either manually several times throughout the day, or with a machine that runs and does several exchanges while you sleep at night. Either way they would be able to be done by me and in the comfort of my own home!
In order to start, they will need to surgically put a PD catheter in my stomach area, which doesn't sound awesome, but sounds WAY less scary to me than a fistula. I'll have to let that heal for a couple of weeks before we can start to use it.
The one main concern that we have about peritoneal dialysis instead of hemodialysis (where they take your blood out, clean it, and put it back in) is that the solution used for PD is glucose (sugar) based, and since I am Type 1 diabetic, that could really mess with my blood sugar levels. Also, if there is too much glucose in the rest of my body (meaning if my blood sugar level is too high) then the dialysate wont be as effective...at least that was my understanding of it. Please keep in mind that this is all brand new to me and what I've learned so far is mostly by looking online. So, that's where I'm at. It's so much for my little brain to digest, but like I said, I'm really hopeful that this is going to give me a little more energy and make it so that day to day, I'm not having to deal quiet so much with the symptoms of CKD. Maybe my pants will even fit me again! ;)
She thinks that it is time to start dialysis. I thought I'd be more nervous than I am. Don't get me wrong, I'm nervous as hell, but I'm also feeling absolutely awful lately and the idea that I might feel even just a little bit better is a really hopeful thought.
She (my Nephrologist...which is a kidney specialist if you didn't know) wants to try Peritoneal Dialysis (PD) first. Basically, I will fill my peritoneal cavity (think of it as a kind of stomach lining) with the dialysate solution which will draw all the waste and extra water to it, then I'll drain the dialysate which will get rid of all that extra stuff in my body that my kidneys aren't filtering out since they don't work well. There are two different ways of doing this exchange. Either manually several times throughout the day, or with a machine that runs and does several exchanges while you sleep at night. Either way they would be able to be done by me and in the comfort of my own home!
In order to start, they will need to surgically put a PD catheter in my stomach area, which doesn't sound awesome, but sounds WAY less scary to me than a fistula. I'll have to let that heal for a couple of weeks before we can start to use it.
The one main concern that we have about peritoneal dialysis instead of hemodialysis (where they take your blood out, clean it, and put it back in) is that the solution used for PD is glucose (sugar) based, and since I am Type 1 diabetic, that could really mess with my blood sugar levels. Also, if there is too much glucose in the rest of my body (meaning if my blood sugar level is too high) then the dialysate wont be as effective...at least that was my understanding of it. Please keep in mind that this is all brand new to me and what I've learned so far is mostly by looking online. So, that's where I'm at. It's so much for my little brain to digest, but like I said, I'm really hopeful that this is going to give me a little more energy and make it so that day to day, I'm not having to deal quiet so much with the symptoms of CKD. Maybe my pants will even fit me again! ;)
Friday, March 9, 2018
My Circle
I've been having a rough time lately.
Emotionally and physically.
When my kidney problem was diagnosed in November my kidney function was around 20% and the doctors told me that percentage would definitely decrease, they were hoping it would decline about 1% per year. Three months later (last month) when they checked my kidney function it was at 13%. Which, in case you aren't great at math, is WAY more than 1% per year...so we're in the process of getting all the paperwork and doctors appointments completed so that I can get put on the transplant list. I still haven't started dialysis yet, apparently there are a couple of different types of dialysis, the one where you have to get a fistula (which is a TERRIFYING idea to me for some reason) and typically takes about 3 days a week for 4 or 5 hours a day (which would make it hard to keep working and therefore keep my insurance....ahh stress!!) Or the other kind of dialysis where you do it at home while you sleep, but in order to be eligible for that type of dialysis my A1C (which is basically the 3 month average of my blood sugar levels...I'm Type I diabetic too, remember) needs to be a bit better (its currently at 8.something and ideally it should be about 6.something), so we're putting off dialysis for as long as I can handle the symptoms of crappy kidneys in the hopes of buying time to get my A1C better and open more options for the dialysis.
Anyway, so I'm dealing with some stress.
Emotionally and physically.
When my kidney problem was diagnosed in November my kidney function was around 20% and the doctors told me that percentage would definitely decrease, they were hoping it would decline about 1% per year. Three months later (last month) when they checked my kidney function it was at 13%. Which, in case you aren't great at math, is WAY more than 1% per year...so we're in the process of getting all the paperwork and doctors appointments completed so that I can get put on the transplant list. I still haven't started dialysis yet, apparently there are a couple of different types of dialysis, the one where you have to get a fistula (which is a TERRIFYING idea to me for some reason) and typically takes about 3 days a week for 4 or 5 hours a day (which would make it hard to keep working and therefore keep my insurance....ahh stress!!) Or the other kind of dialysis where you do it at home while you sleep, but in order to be eligible for that type of dialysis my A1C (which is basically the 3 month average of my blood sugar levels...I'm Type I diabetic too, remember) needs to be a bit better (its currently at 8.something and ideally it should be about 6.something), so we're putting off dialysis for as long as I can handle the symptoms of crappy kidneys in the hopes of buying time to get my A1C better and open more options for the dialysis.
Anyway, so I'm dealing with some stress.
- The stress of the rapid decline in kidney function.
- The stress of making sure my blood sugar levels are as perfect as I can get them (which is hard since the kidney issue effects the blood sugar issue and its still so new to me that I don't really have a firm grasp on how to adjust things to make them as good as possible)
- The stress of gaining up to 25 lbs due to all the water retention and therefore having no clothes that fit
- The stress of getting transplant eligibility paperwork completed which includes;
- The stress of getting into any type of doctor you can possibly think of, which therefore gives the added stress of:
- Scheduling doctor appointments
- Finding new doctors; for example, the dentist which I haven't been to in an embarrassingly long time
- Making sure that the scheduling of all these appointments messes with my work schedule as little as possible since I couldn't do any of this without insurance
- Stressing about how the hell I'm going to pay for all for this, including the thousands of dollars worth of dental work that needs done before I can even turn in the transplant forms
This list could go on and on and on. It seems like I find something new to stress about on a daily basis but I'm gong to stop this stress list now cause that wasn't what this post was supposed to be about. (oh great! Now I'm stressing about a damn blog post! hee hee)
What is so amazing to me though, is the group of family and friends that I have in my life that are taking on so much of this stress without me even having to ask for their help. You want some examples of this amazingness?
- My husband has forbidden me from even looking at the doctor bills that just keep rolling in. He is taking care of it all. I'm not even aloud to get the mail anymore cause he knows that money is something I can't stop worrying about once I start.
- My brothers amazing wife took it upon herself to look up my dental insurance and find a new doctor in my network. She called around to discuss my situation and that we're trying to get this taken care of ASAP so we can start the process of waiting for organ transplants until she found the one that sounded like it would work out the best. Then she called me to tell me that my appointment was set up for later that day to get the dental ball rolling.
- My mom has driven down from her house, which is about 90 miles from my house and takes about an hour and a half, so that she could drive me to various doctor appointments and be there as moral support for me.
- My brother, who is also diabetic, has spent countless hours discussing possible causes and solutions for my blood sugar issues and teaching me about my new Continuous Glucose Monitor and Insulin Pump.
- My Aunt has spent so much time researching and on the phone with people looking into which options would be best, long term, for insurance and my job, and whatnot.
- My mother-in-law has offered to come clean my house
- Some good friends have taken my step-son for the day when my husband was working and I was just too tired to entertain an amazing little 9 year old.
And these are just a few specifics that I can think of. Things that have happened in the last week or so. I'm not even including the many, many texts or calls for offers of "If there is anything at all that I/we can do..." I'm also not even including the moral support and meaningful hugs that people just seem to know that I need.
So the point of this blog post is to shout out to my circle of people. The people that are in contact on a daily basis and the people who are in contact maybe once a month but who I know are thinking about me on a daily basis. I'm a wreck right now, but I KNOW that I would be a million times worse without the support of my people.
I have the best people.
Thank you my people!!
Wednesday, February 7, 2018
The Diagnosis
November 7, 2017
34 Years old
I'd been fighting what I
thought was a cold for a couple of weeks and it seemed to be moving to my
chest. It was so bad that when I lay down to sleep, I couldn't breathe. There
was something in my lungs that was making things uncomfortable and I didn't
like it! Stubborn as I can sometimes be known to be, I decided I didn't need
(or want) to go to the doctor, I just needed cold medicine (i.e. a Hot Toddy)
and some good, restful sleep so I propped myself up and kept grumpily fighting
it until my husband finally convinced me that this wasn't going to go away on
its own. So Tuesday evening, we went to Instacare, thinking they would give me
some kind of steroid or something to get rid of the fluid in my lungs, and I'd
go home to sleep.
I was wrong.
When we got there my blood
pressure was through the roof (130/80 would be a good number...mine was
somewhere closer to 200/90...). They did a chest x-ray and didn't find
pneumonia, which is what I was expecting them to find...or anything else for
that matter. They couldn't diagnose me. They suggested I go to the E.R. instead
to get a full work up and find out why my blood pressure was so high...and you
know, maybe do it before I have a heart attack or something...
So we went to the E.R.
They did their tests. Poked and
prodded, x-rays and ultrasounds for what felt like forever. Then, around 2:00
or 3:00 in the morning they finally came in and gave me the news.
My kidneys are shutting down.
Now let me back track just a
little here to let you know that when I was 8 years old I was diagnosed with
type I diabetes. I'd been dependent on insulin for 26 years of my life at this
point. I've had eye problems. I've had nerve damage in my feet. But the big
scare for all diabetics is Renal Failure. And I was lying in the E.R. being
told that is exactly what I have.
During my 4 day hospital stay I
learned that my kidneys were working at about 20%. Dialysis and/or a transplant
is an inevitability. It’s just a matter of when. Oh and all the food and
beverage options that I so enjoy? They are a thing of the past. I learned that
I'll have to limit my sodium intake, my potassium intake, and my phosphorus
intake. I also learned that this is not something I'll ever get better from.
This is a lifelong sentence. Dialysis can help, but it isn’t a cure. A
transplant can help, but it’s not a cure. They are just treatments.
This sucks!
Back to Blogging???
A lot is going on in my life lately and my husband, Devon suggested that I start blogging again, to have an outlet so to speak....I feel like it might be a good idea. I doubt there is anybody that still even looks at this thing (if there is anyone, I imagine they have been sorely disappointed by the amount of posts in the past several years! ha ha) but I think it might be a good thing just for me. I have always enjoyed looking back on my old posts as a kind of journal and it does seem to help to get some of this shit that's bouncing around my head into type...somehow organizes it all or something for me so its more manageable, I think. So, I think I might attempt the blogging thing. Couple of warnings:
- I tend to be a bit of a rambler...deal with it
- No promises on how often this will or will not happen. Just something I'd like to try out for now.
- I reserve the right to be or sound like a dumb ass on my blog...its MY blog so, again...deal with it! :)
I think that's all for now. Lets see how this goes....wish me luck!
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