Sorry it has been a while, i have been down, i think the wife brought home a cold bug
and it has had us drained, no real bad side effects from it, but just no energy at all.
Will post more in a bit.
Tuesday, October 9, 2012
Tuesday, October 2, 2012
Support
Support is very important with this disease, From where ever you can get it.
I have found a GREAT group online that i am a member of, which has both pre and post
transplant members.
There are roughly 200 of us, world wide although most are in the u.s.
There is so much to learn about whats goiing on within the body, that for one person to
try to take this on by them self would be way to overwhelming.
So if you are one facing liver issues and need a good group to ask questions and get
encouragment, dont hesitate to get ahold of me. We would be glad to have you among us.
We also have caretakers those that stick by us though all of this in our group as well, which
is great.
its nice to see all aspects of how this disease affects everyone involved.
ok, im not really into writing right now, kind of brain dead at the moment, but will come back later
today and write some more.
I hope everyone is having a good day.
I have found a GREAT group online that i am a member of, which has both pre and post
transplant members.
There are roughly 200 of us, world wide although most are in the u.s.
There is so much to learn about whats goiing on within the body, that for one person to
try to take this on by them self would be way to overwhelming.
So if you are one facing liver issues and need a good group to ask questions and get
encouragment, dont hesitate to get ahold of me. We would be glad to have you among us.
We also have caretakers those that stick by us though all of this in our group as well, which
is great.
its nice to see all aspects of how this disease affects everyone involved.
ok, im not really into writing right now, kind of brain dead at the moment, but will come back later
today and write some more.
I hope everyone is having a good day.
Monday, October 1, 2012
Lost in limbo
Well, been a while since i have seen my GI doc. Waiting for Medicare to kick in or Medicaid or something, because the insurance we have is caca.
We have to re-apply for medicare here in a few days and try it again. I guess we are just going to make this a routine, as soon as we get denied, go apply again. What are they gonna do, tell us no? *lol*
If we bug them enough maybe things will come around. My Gi doc is at a standstill, wants to start treatment for the Hep C, but we cant until insurance kicks in and covers the cost.
Sleep has been off and on the past few days. Today i feel run down, but did manage to get a few hours sleep. Although here is its 2am and im wide awake... good thing for movies on youtube. Because out normal tv stations all 6 of them suck about this time of night.
We were going to go to church last night, but just wasn't feeling up to it. I bet they are beginning to wonder if we abandoned them.. but with any luck things will get back to normal and we will show up next sunday. This week is revival and they are having sermons every night till wensday, but not sure i want to go then. Im not a people person, usually lots of new people show up then. Kind of like holliday's. You will never see me at a church on a holliday. Its just something i dont do.. to many show up, the only day of the year they go, the place is packed and you look around and wonder who all the new faces are, when you ask, you are told they are members from way back... to me thats just not right. So i avoid hollidays, mainly so i dont have to hold my tongue and end up saying something i shouldnt. I know me... i probably would.
Jordi was wound yesterday, lil nut, she was funny as heck, just all sorts of cutting up and having fun. Thats my snuggle bug. Enjoy it while i can before she outgrows it like her brother.
well gona run for now. sorry its such a boring read lately, my mind has been elsewhere. To many things to think about and worry about. Hope if you are reading this you are doing good.
We have to re-apply for medicare here in a few days and try it again. I guess we are just going to make this a routine, as soon as we get denied, go apply again. What are they gonna do, tell us no? *lol*
If we bug them enough maybe things will come around. My Gi doc is at a standstill, wants to start treatment for the Hep C, but we cant until insurance kicks in and covers the cost.
Sleep has been off and on the past few days. Today i feel run down, but did manage to get a few hours sleep. Although here is its 2am and im wide awake... good thing for movies on youtube. Because out normal tv stations all 6 of them suck about this time of night.
We were going to go to church last night, but just wasn't feeling up to it. I bet they are beginning to wonder if we abandoned them.. but with any luck things will get back to normal and we will show up next sunday. This week is revival and they are having sermons every night till wensday, but not sure i want to go then. Im not a people person, usually lots of new people show up then. Kind of like holliday's. You will never see me at a church on a holliday. Its just something i dont do.. to many show up, the only day of the year they go, the place is packed and you look around and wonder who all the new faces are, when you ask, you are told they are members from way back... to me thats just not right. So i avoid hollidays, mainly so i dont have to hold my tongue and end up saying something i shouldnt. I know me... i probably would.
Jordi was wound yesterday, lil nut, she was funny as heck, just all sorts of cutting up and having fun. Thats my snuggle bug. Enjoy it while i can before she outgrows it like her brother.
well gona run for now. sorry its such a boring read lately, my mind has been elsewhere. To many things to think about and worry about. Hope if you are reading this you are doing good.
Saturday, September 29, 2012
I feel guilty............
I do, not for anything i have done recently, but for whats coming.
Am i doing the right thing by putting the wife and family through all of this. Unlike them i have read and researched, and i know what is ahead, and its not a good thing at all.
Once it starts there is no turning back.. things will go down hill and stay that way until i am lucky enough for a transplant or croak.
But am i doing right by sticking by our family and putting them through all of this that is to come?
The last thing i want to do is hurt the ones that i love, but as we all know that have been around this beast its going to happen.
I just wonder if i am doing the right thing. I cant see myself being anywhere else, but hurting them is the last thing i want to do, and i know its going to.
Between the HE and all the worry and stress, hospital trips, ER trips... so much is ahead that is not right at all.. am i doing whats right by putting them through all of this?
As i slowly go down hill, it becomes more and more pressing to me to know that i am doing whats right, i dont want to hurt them.
Ok im off for now...
just rambelings that are bouncing around in my head.
Am i doing the right thing by putting the wife and family through all of this. Unlike them i have read and researched, and i know what is ahead, and its not a good thing at all.
Once it starts there is no turning back.. things will go down hill and stay that way until i am lucky enough for a transplant or croak.
But am i doing right by sticking by our family and putting them through all of this that is to come?
The last thing i want to do is hurt the ones that i love, but as we all know that have been around this beast its going to happen.
I just wonder if i am doing the right thing. I cant see myself being anywhere else, but hurting them is the last thing i want to do, and i know its going to.
Between the HE and all the worry and stress, hospital trips, ER trips... so much is ahead that is not right at all.. am i doing whats right by putting them through all of this?
As i slowly go down hill, it becomes more and more pressing to me to know that i am doing whats right, i dont want to hurt them.
Ok im off for now...
just rambelings that are bouncing around in my head.
Thursday, September 27, 2012
Being Sick...
many reading have been sick before, but in a few days to a week, you feel better and are back to normal life.
With liver disease, not only are you not going to feel better in a few days, but you may never be who you once were again. It is a difficult aspect to this to accept.
Here let me explain..... What did you do today?
Woke up, maybe hopped out of bed, got in the shower, enjoyed a nice long warm shower/bath, got out and fixed some food to eat, got something to drink, contemplated the day you had ahead... got dressed and headed off to work for the day.
While at work they as usual took advantage of you... "Hey when you are done with that can you".. like you have enough time or energy to finish what you are doing, let alone do another project on the side. But some how you manage to get both done because that's the type of person you are, finally work is over, and you are glad.
Now work is over, and you have the evening ahead of you. hmm what to do, hiking, jogging, maybe go out for a movie, or how about dinner out, why not, you deserve it, you worked hard.. or hang out with friends and enjoy the evening. Then home to relax and watch a little tv before bed and doing it all over again. or if you have kids, you are taking care of them and enjoying kids being kids.. well most the time anyway lol.
Every day for the past year and then some, i wake up and am reminded of the situation i am in, as my eyes open pain is screaming in my head because by the time i wake up, all of my pain med's have worn off, so i try to crawl off the bed and make my way to the kitchen to get a drink, then off to the couch... sadly basically my new home. I sit down and take my pain pill and hope it kicks in soon, to distract myself i grab my laptop and read up on whats going on in the world, see what friends are doing on that evil FB. and wait... finally after a hour or so my pain meds kick in and i am not hurting as bad.
Work is not a option for me, so i get to spend my time wishing i was able to work. Ya know years ago i always though it would be nice to be retired.... ammmm this is not what i had in mind...
Time for supper... hmmm ok, so whats on the menu.. has to be something very low in salt, i try to keep my daily salt intake to500mg a day or lower.. Now for those of you who have never actually payed attention to salt.. take what you are having for supper and read all the labels, look for sodium quantities..
just for fun, do this for a few days, you will be amazed at how many things have high salt content , many things that you would not expect. Why no salt you ask.. salt causes the body to retain water, with my condition, i already retain water as it is, any extra will build up and cause major stomach pain, and if it gets bad enough, i get to go to the doc and have them stick a tube in me and drain it.... So far i have not had to have this done, and i dont want to if i can avoid it, so i pay close attention to what i eat and keep the salt as low as possible.
On any given day its a gamble if food will even stay down.. i get spells some times where i can go a week where everything i eat comes back up, then i get a break for a while and do ok. Food is not my friend.
Relaxing at home and enjoying the kids is a spectators sport any more.. use to be i was right there in the middle of it all, it was nothing for me to walk through the house and grab a kid in each arm and rough house with them, and have a ball.. now i cant.
Now i have the future to think about.. the things that might happen, such as surgery where i am left with a 12-18" scar and someones Else's liver inside me, which is a odd concept when you really think about it.
The Battle with HE, where it can do things from make you hurt the ones you love and care about, to totally changing your life and making things such as common conversations nearly impossible.
I stand the chance to loose me in this battle, i may win the battle, but what or who will i be when its all over.. how much of 'me' will still be there... what parts of 'me' will survive this...
and there is always the chance that things go wrong, and i just don't survive this.. as much as i don't like this , it is a very real possibility that i can not ignore. I wish i had gotten live insurance before all of this happened, so at least if things go wrong, i would know that my family was better off, and at least they would not have to worry about money issues while dealing with everything else. But that didn't happen, now i have to think about the cold reality that not only is there a chance they will have to deal with me not being around if things go bad, but will also have to deal with being broke and figure out how to pay bills and mortgage. i wish there was something i could do to change this, so at least money would not be a stress for them.
How will things play out.. who knows... right now its all a guessing game.. one day at a time and see what happens...
So all this rambling, what i really want to say is... Appreciate what you have, even though it may not be what you want at the moment... stop and actually take a few min. and reflect. Because in life things can change quickly. Enjoy what you do have.
With liver disease, not only are you not going to feel better in a few days, but you may never be who you once were again. It is a difficult aspect to this to accept.
Here let me explain..... What did you do today?
Woke up, maybe hopped out of bed, got in the shower, enjoyed a nice long warm shower/bath, got out and fixed some food to eat, got something to drink, contemplated the day you had ahead... got dressed and headed off to work for the day.
While at work they as usual took advantage of you... "Hey when you are done with that can you".. like you have enough time or energy to finish what you are doing, let alone do another project on the side. But some how you manage to get both done because that's the type of person you are, finally work is over, and you are glad.
Now work is over, and you have the evening ahead of you. hmm what to do, hiking, jogging, maybe go out for a movie, or how about dinner out, why not, you deserve it, you worked hard.. or hang out with friends and enjoy the evening. Then home to relax and watch a little tv before bed and doing it all over again. or if you have kids, you are taking care of them and enjoying kids being kids.. well most the time anyway lol.
Every day for the past year and then some, i wake up and am reminded of the situation i am in, as my eyes open pain is screaming in my head because by the time i wake up, all of my pain med's have worn off, so i try to crawl off the bed and make my way to the kitchen to get a drink, then off to the couch... sadly basically my new home. I sit down and take my pain pill and hope it kicks in soon, to distract myself i grab my laptop and read up on whats going on in the world, see what friends are doing on that evil FB. and wait... finally after a hour or so my pain meds kick in and i am not hurting as bad.
Work is not a option for me, so i get to spend my time wishing i was able to work. Ya know years ago i always though it would be nice to be retired.... ammmm this is not what i had in mind...
Time for supper... hmmm ok, so whats on the menu.. has to be something very low in salt, i try to keep my daily salt intake to500mg a day or lower.. Now for those of you who have never actually payed attention to salt.. take what you are having for supper and read all the labels, look for sodium quantities..
just for fun, do this for a few days, you will be amazed at how many things have high salt content , many things that you would not expect. Why no salt you ask.. salt causes the body to retain water, with my condition, i already retain water as it is, any extra will build up and cause major stomach pain, and if it gets bad enough, i get to go to the doc and have them stick a tube in me and drain it.... So far i have not had to have this done, and i dont want to if i can avoid it, so i pay close attention to what i eat and keep the salt as low as possible.
On any given day its a gamble if food will even stay down.. i get spells some times where i can go a week where everything i eat comes back up, then i get a break for a while and do ok. Food is not my friend.
Relaxing at home and enjoying the kids is a spectators sport any more.. use to be i was right there in the middle of it all, it was nothing for me to walk through the house and grab a kid in each arm and rough house with them, and have a ball.. now i cant.
Now i have the future to think about.. the things that might happen, such as surgery where i am left with a 12-18" scar and someones Else's liver inside me, which is a odd concept when you really think about it.
The Battle with HE, where it can do things from make you hurt the ones you love and care about, to totally changing your life and making things such as common conversations nearly impossible.
I stand the chance to loose me in this battle, i may win the battle, but what or who will i be when its all over.. how much of 'me' will still be there... what parts of 'me' will survive this...
and there is always the chance that things go wrong, and i just don't survive this.. as much as i don't like this , it is a very real possibility that i can not ignore. I wish i had gotten live insurance before all of this happened, so at least if things go wrong, i would know that my family was better off, and at least they would not have to worry about money issues while dealing with everything else. But that didn't happen, now i have to think about the cold reality that not only is there a chance they will have to deal with me not being around if things go bad, but will also have to deal with being broke and figure out how to pay bills and mortgage. i wish there was something i could do to change this, so at least money would not be a stress for them.
How will things play out.. who knows... right now its all a guessing game.. one day at a time and see what happens...
So all this rambling, what i really want to say is... Appreciate what you have, even though it may not be what you want at the moment... stop and actually take a few min. and reflect. Because in life things can change quickly. Enjoy what you do have.
Tuesday, September 25, 2012
The Fear of HE
hepatic encephalopathy or HE is a condition that occurs when a damaged liver cannot remove the
toxins that a healthy liver normally would. These toxins then pass into
the blood and travel through the system until they reach the brain. They
can then damage the brain and cause HE. People with liver damage, which
is also known as cirrhosis, are most likely to get HE
Source:http://www.xifaxan550.com/about-hepatic-encephalopathy/index.aspx?gclid=CMKO-Zuv0rICFURxQgodFQYA4w
For those who would like to see a short trailer of a new film coming out on HE please go to
https://www.hesback.com/ and cluck "view Trailer".
Not everyone that has liver issues with or without cerossis end up having the effects of HE,
but it is a very real and serious part of the journey.
This above all the other issues with this condition bothers me the most. The effects dont always
stop after the transpant. In some cases once the damage is done, its perminante.
hmmm ok i am going to have to come back to this.. i thought i was ready to write about this, but not yet... it is to much for me right now. Just watching the trailer had me crying like a baby. Facing the reality that this may be my future, and near future not distant future scares the crap out of me.
ok, i will try to do this page a little at a time so check back.. It is going to take me a while.
Feel free to read through the links.
Sorry, not much update today, might later, just not in the mood to type so far today, to much to worry and think about. This is one of those days where everything is just overwhelming.
one of those days i guess
He is not something you get, and then in a few days get over. HE changes you. Some cases the people are never who they were. The thought of liviing life being someone else scares the crap out of me.
Not to mention what it dose to the ones who you are closest to.
This is a huge fear for me. I hope i am one of the lucky ones and avoid it for the most part.
Source:http://www.xifaxan550.com/about-hepatic-encephalopathy/index.aspx?gclid=CMKO-Zuv0rICFURxQgodFQYA4w
For those who would like to see a short trailer of a new film coming out on HE please go to
https://www.hesback.com/ and cluck "view Trailer".
Not everyone that has liver issues with or without cerossis end up having the effects of HE,
but it is a very real and serious part of the journey.
This above all the other issues with this condition bothers me the most. The effects dont always
stop after the transpant. In some cases once the damage is done, its perminante.
hmmm ok i am going to have to come back to this.. i thought i was ready to write about this, but not yet... it is to much for me right now. Just watching the trailer had me crying like a baby. Facing the reality that this may be my future, and near future not distant future scares the crap out of me.
ok, i will try to do this page a little at a time so check back.. It is going to take me a while.
Feel free to read through the links.
Sorry, not much update today, might later, just not in the mood to type so far today, to much to worry and think about. This is one of those days where everything is just overwhelming.
one of those days i guess
He is not something you get, and then in a few days get over. HE changes you. Some cases the people are never who they were. The thought of liviing life being someone else scares the crap out of me.
Not to mention what it dose to the ones who you are closest to.
This is a huge fear for me. I hope i am one of the lucky ones and avoid it for the most part.
Called the doc today..
So yesterday got my pain meds, But it was the wrong amount. So after being on the phone and on hold for a while, they checked and what a suprise.. *lol*..
At least i wont have to go a week without pain meds.. I have to tell ya, that sucked big time.
But i have only had 2 pain pills today and i am feeling 100% better than what i was 2 days ago.
Moving around with no problem.. i am a little stiff, and soar but thats expected. Even when i was taking the full dosage of 8mg of Morphine a day, I was still hurting. But nothing like without it..
The pain is on the right side just below the rib cage and all the way down to the pelvic bone, then wraps around to just about the spine. I do have a little pain that comes and goes on the left side. But from talking to others in my situation, that is not unusual. The liver is on the right side, and some times it kicks the kidney up and causes it to hurt. As long as its once in a while i am not to worried.
Last night i slept SSSsoooooooo good. I cant describe how that felt, after over a week with maby 8 hours sleep the whole time, to go to bed at 9pm last night and pass out and sleep until 3am this morning was so nice.... and i even went back to bed after school started and napped for a couple of more hours.
Jordi is at home today, she said she threw up once this morning when she was gettting dressed, and her tummy and throat hurt. So decided to keep her home just to be safe. The sad part is its just her and i at home.. So hopefully i wont end up catching what she has. I am not sure how my body would handle that on top of what i already have.
I have supper fixed, and ready, Delilah is off with alec he had a dentist apointment. After that its a lazy evening.
Hope everyone is doing good that is reading this.
More later.
At least i wont have to go a week without pain meds.. I have to tell ya, that sucked big time.
But i have only had 2 pain pills today and i am feeling 100% better than what i was 2 days ago.
Moving around with no problem.. i am a little stiff, and soar but thats expected. Even when i was taking the full dosage of 8mg of Morphine a day, I was still hurting. But nothing like without it..
The pain is on the right side just below the rib cage and all the way down to the pelvic bone, then wraps around to just about the spine. I do have a little pain that comes and goes on the left side. But from talking to others in my situation, that is not unusual. The liver is on the right side, and some times it kicks the kidney up and causes it to hurt. As long as its once in a while i am not to worried.
Last night i slept SSSsoooooooo good. I cant describe how that felt, after over a week with maby 8 hours sleep the whole time, to go to bed at 9pm last night and pass out and sleep until 3am this morning was so nice.... and i even went back to bed after school started and napped for a couple of more hours.
Jordi is at home today, she said she threw up once this morning when she was gettting dressed, and her tummy and throat hurt. So decided to keep her home just to be safe. The sad part is its just her and i at home.. So hopefully i wont end up catching what she has. I am not sure how my body would handle that on top of what i already have.
I have supper fixed, and ready, Delilah is off with alec he had a dentist apointment. After that its a lazy evening.
Hope everyone is doing good that is reading this.
More later.
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