Allie
This is just getting too hard!!
Oct 16, 2008
I'm still in the hospital. I've been here a week today. I'm still on TPN, they doubled my pain meds and I'm TRYING to eat but it's not going very well at all. For those that don't know, I'm here for malnutrition and since seeing my cardiologist last Tuesday, he told me that we need to get this malnutrition under control right now because my life is on the line. I've had EKG changes that he doesn't like that are a direct result to how my body is reacting to the malnutrition and how some medication I was taking was affecting it too. I had an episode with my heart today that was quite similar to one that I had the Saturday before I came in here that landed me in the ER by ambulance. I can probably say with all certainty that we'll be getting a cardiology consult tomorrow.
Well, my choices while I've been here to try and get rid of the massive amounts of pain that prevent me from eating and reverse what malnutrition has done to my body are to either put a J-tube in and deliver nutrients directly to my small intestine, get a vagotomy which cuts the nerve(s) to the stomach which hopefully would stop the pain (but has too many potentially rotten side effects), or get a total reversal (this is so radical, doesn't guarantee ANYTHING will change and is my LAST resort). Well after weighing all of my choices, I think the J-tube is going to be the best bet. So does my surgeon. It will give me the nutrition I need and through a more natural route than this TPN I'm getting in my arm. The only problem with the J-tube is that I might possibly have to pay for my own pump and supplies because yet again, my insurance company is $%#^$^*#&**@&@*^#&!!! I have Medicare and it just seems they don't want to pay for anything! If you can even take ONE bite of food, they won't pay for the stuff you need at home. That's crazy. Oooohhh so I can take a few bites of food. A few bites of food is NOT going to keep me nourished and they know that. But at this point, I don't have any other GOOD choices. I can NOT keep coming back to the hospital every month to get TPN. It takes me away from my children unneccesarily and for TOO long. We have 4 kids ages 13, 5, 4, & 2. They NEED their Mom and I NEED them!!
And also we have NO family around to help. No family OR friends help us out at ALL. We've been doing this for 16 MONTHS by ourselves. My husband takes care of ALL 4 of our children BY HIMSELF 24/7. He is SO WONDERFUL! I don't know how he does all that he does. And also he takes care of all the laundry, meals, dishes, cleaning, getting the kids a bath, grooming and dressing them, getting them to school......ALL of it. It is HARD on him....almost as hard as all this health stuff is on me. He has 4 herniated discs in his back and needs a 4 level back fusion but he can't get his back fixed until I get fixed enough for ME to be able to take care of HIM for at least 6 months. He lives with horrible pain everyday in his back but there's nothing we can do to fix the situation. We live on a fixed income from Social Security. We don't have ANY extra money to hire a housekeeper or someone to do the lawn so he doesn't have to tear his back up anymore than it already is. And we don't have the extra money even for him to put gas in our van to come down here so that I can see him and our children (we live an hour and a half away from the hospital). It wears on me horribly. And now we're going to have to come up with the money to pay for my tube feeding supplies?? I'm just at a loss as to how we're going to do that! As it is, we're not going to be able to afford anything for Christmas, although I'm sure that should be the least of our worries. And truthfully it is, my health and making sure the kids have food, clothes and shelter come first, but this is REALLY the first time we're going to actually have to face the kids NOT having a Christmas or presents under the tree. UGH. It makes me sad! And I feel like it's all MY fault. If I weren't sick. If I didn't have to have feeding tube supplies......a pump, formula, dressings, syringes. If I hadn't have had this surgery! AH! It makes me want to scream. This is all so horribly unfair. I HAVE to have this to save my life. I just don't know what to do about all of this!?!?!? These are horrible questions that I have to answer and an even more horrible situation to fix. I just don't know what I'm going to do. I need HELP badly!! I'm tearing myself UP thinking about all of this! Man I just want things to be normal again.
Thank you all for listening!
Well, my choices while I've been here to try and get rid of the massive amounts of pain that prevent me from eating and reverse what malnutrition has done to my body are to either put a J-tube in and deliver nutrients directly to my small intestine, get a vagotomy which cuts the nerve(s) to the stomach which hopefully would stop the pain (but has too many potentially rotten side effects), or get a total reversal (this is so radical, doesn't guarantee ANYTHING will change and is my LAST resort). Well after weighing all of my choices, I think the J-tube is going to be the best bet. So does my surgeon. It will give me the nutrition I need and through a more natural route than this TPN I'm getting in my arm. The only problem with the J-tube is that I might possibly have to pay for my own pump and supplies because yet again, my insurance company is $%#^$^*#&**@&@*^#&!!! I have Medicare and it just seems they don't want to pay for anything! If you can even take ONE bite of food, they won't pay for the stuff you need at home. That's crazy. Oooohhh so I can take a few bites of food. A few bites of food is NOT going to keep me nourished and they know that. But at this point, I don't have any other GOOD choices. I can NOT keep coming back to the hospital every month to get TPN. It takes me away from my children unneccesarily and for TOO long. We have 4 kids ages 13, 5, 4, & 2. They NEED their Mom and I NEED them!!
And also we have NO family around to help. No family OR friends help us out at ALL. We've been doing this for 16 MONTHS by ourselves. My husband takes care of ALL 4 of our children BY HIMSELF 24/7. He is SO WONDERFUL! I don't know how he does all that he does. And also he takes care of all the laundry, meals, dishes, cleaning, getting the kids a bath, grooming and dressing them, getting them to school......ALL of it. It is HARD on him....almost as hard as all this health stuff is on me. He has 4 herniated discs in his back and needs a 4 level back fusion but he can't get his back fixed until I get fixed enough for ME to be able to take care of HIM for at least 6 months. He lives with horrible pain everyday in his back but there's nothing we can do to fix the situation. We live on a fixed income from Social Security. We don't have ANY extra money to hire a housekeeper or someone to do the lawn so he doesn't have to tear his back up anymore than it already is. And we don't have the extra money even for him to put gas in our van to come down here so that I can see him and our children (we live an hour and a half away from the hospital). It wears on me horribly. And now we're going to have to come up with the money to pay for my tube feeding supplies?? I'm just at a loss as to how we're going to do that! As it is, we're not going to be able to afford anything for Christmas, although I'm sure that should be the least of our worries. And truthfully it is, my health and making sure the kids have food, clothes and shelter come first, but this is REALLY the first time we're going to actually have to face the kids NOT having a Christmas or presents under the tree. UGH. It makes me sad! And I feel like it's all MY fault. If I weren't sick. If I didn't have to have feeding tube supplies......a pump, formula, dressings, syringes. If I hadn't have had this surgery! AH! It makes me want to scream. This is all so horribly unfair. I HAVE to have this to save my life. I just don't know what to do about all of this!?!?!? These are horrible questions that I have to answer and an even more horrible situation to fix. I just don't know what I'm going to do. I need HELP badly!! I'm tearing myself UP thinking about all of this! Man I just want things to be normal again.
Thank you all for listening!
Hospital Update #1
Oct 11, 2008
Well I'm going to be lazy and use parts of a post that I posted to someone that was asking about me as my update!!
I've been here in the hospital again since Thursday. I'm really groggy. The past couple of days have been really hard as far as pain go, but I finally get it under control and then they put my PICC line in this afternoon and it took 2 tries to get it in and now my arm is in MAJOR pain. And my computer is being finicky and NOT picking up a wireless signal all the time so it has taken me HOURS to get a wireless signal for my internet. I really need an external wireless card. Grr. This thing is my lifeline or I'd go nuts! I'm glad my friend Kelly from the OH board called today because I was about to go crazy without human contact! lol I've also had a headache for 2 days straight and nothing is getting rid of it. All the pain killers I'm on aren't working, plus I've had Tylenol several times and kept an ice pack on my head for several hours. It finally stopped hurting JUST enough for me to be able to pick my head up off the pillow and fiddle with my computer to see if I could get it to pick up internet, which thank God after 2 hours it finally IS.
As far as a plan goes, like I said before, they finally got my PICC line in me and I'm on my 2nd bag of TPN (nutrition in the vein for those that don't know what that is). We are going to talk more on Monday because my Dr. is not on this weekend, but the main priority was just to get me in here and get me started on some nutrition. I'm on a liquid diet as well but I'm hardly touching that. I think I've drank 2 glasses of carnation instant breakfast, 1/2 a glass of tea and several little 4 oz. containers of apple juice since I've been here. My stomach has just been VERY angry the past couple of days and really hard to control the pain, especially since I went off Methadone on Thursday when I came into the hospital. I was on such a small dose of it for pain, but I guess it was making some kind of difference. I'll probably know much more on Monday when my Dr. gets back. I do know that I'm going to ask him about getting a test called an MRCP. My cardiologist seems to think I have a bile duct stricture and that's the test to look for that so I'll be mentioning that to him Monday and see what he thinks. It's one thing we haven't checked for so might as well. Otherwise, I'm just in for a long haul of sitting and being "fed" and hoping we can get all of the bad effects of this malnutrition turned around. Hopefully!
I'm having a really hard time dealing with missing my family. I shouldn't HAVE to choose between my health and being home with my kids and hubby, but stupid Medicare has been basically doing that for the past year now. They won't pay for the TPN I need at home so I can stay at home with my family and since we can't afford to pay for it on our own, I have to make the decision to either take care of my health and come up to the hospital an hour and a half away from our home to get nourished and hydrated or stay home with my family, with my KIDS that NEED their Mom. I'm so sick and tired of having to make that choice and Medicare is doing a WONDERFUL job of putting me in that position DAILY. I've let my health suffer for the past few months because I just absolutely REFUSED to leave my kids anymore to come up to the hospital to get TPN when they could easily and more CHEAPLY pay for home health care. I've talked to them until I'm blue in the face and so has my surgeon, but it doesn't seem to make any difference even though I NEED it, I need it long term and I'm requiring FULL calories on it. What a predicament to put a mother of 4 young children in! I hate choosing between my health and them.
This all is just getting to be too much and I wish there was a better solution to it all. It's so hard on me and I don't think anyone quite understands HOW hard it is. I've said it before, but I'll say it again: I could really use ALL the support I can get! I try to stay super strong but even this strong woman has her breaking point or a point where she could just use someone ANYONE to understand! Thank God for those of you who continue to pray and continue to support me. I appreciate it!
I've been here in the hospital again since Thursday. I'm really groggy. The past couple of days have been really hard as far as pain go, but I finally get it under control and then they put my PICC line in this afternoon and it took 2 tries to get it in and now my arm is in MAJOR pain. And my computer is being finicky and NOT picking up a wireless signal all the time so it has taken me HOURS to get a wireless signal for my internet. I really need an external wireless card. Grr. This thing is my lifeline or I'd go nuts! I'm glad my friend Kelly from the OH board called today because I was about to go crazy without human contact! lol I've also had a headache for 2 days straight and nothing is getting rid of it. All the pain killers I'm on aren't working, plus I've had Tylenol several times and kept an ice pack on my head for several hours. It finally stopped hurting JUST enough for me to be able to pick my head up off the pillow and fiddle with my computer to see if I could get it to pick up internet, which thank God after 2 hours it finally IS.
As far as a plan goes, like I said before, they finally got my PICC line in me and I'm on my 2nd bag of TPN (nutrition in the vein for those that don't know what that is). We are going to talk more on Monday because my Dr. is not on this weekend, but the main priority was just to get me in here and get me started on some nutrition. I'm on a liquid diet as well but I'm hardly touching that. I think I've drank 2 glasses of carnation instant breakfast, 1/2 a glass of tea and several little 4 oz. containers of apple juice since I've been here. My stomach has just been VERY angry the past couple of days and really hard to control the pain, especially since I went off Methadone on Thursday when I came into the hospital. I was on such a small dose of it for pain, but I guess it was making some kind of difference. I'll probably know much more on Monday when my Dr. gets back. I do know that I'm going to ask him about getting a test called an MRCP. My cardiologist seems to think I have a bile duct stricture and that's the test to look for that so I'll be mentioning that to him Monday and see what he thinks. It's one thing we haven't checked for so might as well. Otherwise, I'm just in for a long haul of sitting and being "fed" and hoping we can get all of the bad effects of this malnutrition turned around. Hopefully!
I'm having a really hard time dealing with missing my family. I shouldn't HAVE to choose between my health and being home with my kids and hubby, but stupid Medicare has been basically doing that for the past year now. They won't pay for the TPN I need at home so I can stay at home with my family and since we can't afford to pay for it on our own, I have to make the decision to either take care of my health and come up to the hospital an hour and a half away from our home to get nourished and hydrated or stay home with my family, with my KIDS that NEED their Mom. I'm so sick and tired of having to make that choice and Medicare is doing a WONDERFUL job of putting me in that position DAILY. I've let my health suffer for the past few months because I just absolutely REFUSED to leave my kids anymore to come up to the hospital to get TPN when they could easily and more CHEAPLY pay for home health care. I've talked to them until I'm blue in the face and so has my surgeon, but it doesn't seem to make any difference even though I NEED it, I need it long term and I'm requiring FULL calories on it. What a predicament to put a mother of 4 young children in! I hate choosing between my health and them.
This all is just getting to be too much and I wish there was a better solution to it all. It's so hard on me and I don't think anyone quite understands HOW hard it is. I've said it before, but I'll say it again: I could really use ALL the support I can get! I try to stay super strong but even this strong woman has her breaking point or a point where she could just use someone ANYONE to understand! Thank God for those of you who continue to pray and continue to support me. I appreciate it!
My life is on the line
Oct 07, 2008
I went to the cardiologist today to get checked out after I had been to the ER on Saturday. It turns out that the prolonged QT interval was prolonged but not quite enough to be anything of a problem so that was a relief....but the only relief that I got!!!
They did another EKG on me there in the office and my EKG still isn't normal. Come to find out all of this malnutrition is effecting my heart and it needs to be dealt with pronto. My cardiologist told me that I needed to get with a malnutrition specialist and go somewhere like the Mayo Clinic in Minnesota or Arizona to get my body straightened out because my life is on the line.
I left that appointment so scared to death. I felt like I was in some sort of weird dream. I couldn't even cut a coupon out of the coupon circular because my hands were shaking so bad just thinking about it. I'm scared. I'm just sitting here and I feel like I need to be doing something but I don't know what. I called my surgeon so we could start getting all of this sorted out but he was in a meeting for the rest of the afternoon and couldn't be disturbed so they said he would have to call me tomorrow, but I pretty much know what the plan is going to be. He will admit me and then we're going to get down to business on where we go from there.....whether I stay in Dallas or if I go somewhere else because this time, ALL of this is going to be FIXED before I leave!!!
I want to reverse the damage that all of this malnutrition is causing. I'm 32 years old. A wife and mother of 4. I am NOT going to die young because no one wants to fix this problem. I'm not going to keep laying here wasting away while no one gives me any answers. It's stupid.
So that's where I'm at. I'm really scared and I just don't know what to do. I'm sure I'll have more answers tomorrow, but man it's going to be a LONG night.
They did another EKG on me there in the office and my EKG still isn't normal. Come to find out all of this malnutrition is effecting my heart and it needs to be dealt with pronto. My cardiologist told me that I needed to get with a malnutrition specialist and go somewhere like the Mayo Clinic in Minnesota or Arizona to get my body straightened out because my life is on the line.
I left that appointment so scared to death. I felt like I was in some sort of weird dream. I couldn't even cut a coupon out of the coupon circular because my hands were shaking so bad just thinking about it. I'm scared. I'm just sitting here and I feel like I need to be doing something but I don't know what. I called my surgeon so we could start getting all of this sorted out but he was in a meeting for the rest of the afternoon and couldn't be disturbed so they said he would have to call me tomorrow, but I pretty much know what the plan is going to be. He will admit me and then we're going to get down to business on where we go from there.....whether I stay in Dallas or if I go somewhere else because this time, ALL of this is going to be FIXED before I leave!!!
I want to reverse the damage that all of this malnutrition is causing. I'm 32 years old. A wife and mother of 4. I am NOT going to die young because no one wants to fix this problem. I'm not going to keep laying here wasting away while no one gives me any answers. It's stupid.
So that's where I'm at. I'm really scared and I just don't know what to do. I'm sure I'll have more answers tomorrow, but man it's going to be a LONG night.
What a long time it's been!
Oct 06, 2008
Gosh I've been gone for a long time. My laptop has decided not to pick up the internet in the bedroom and since I'm bedridden, I rarely get to get on the desktop computer in the den. I finally did today and caught up on some things that needed to be done. I didn't have any emails that needed answering....who woulda thought that after almost 3 months? Oh well.
Things have not gotten betterwhere my health is concerned. They have actually taken a nosedive. About 2 weeks ago my right lower leg went numb and the feeling has not come back. Saturday I was taken by ambulance to the ER because my heart was beating irregularly again. I thought that it was my potassium level dipping again but it wasn't. Turns out that I have a very serious heart problem. It's called prolonged QT syndrome. It's a problem with the rhythm of the heart and can cause a lethal ventricular arrythmia....in otherwards one minute I can be fine and the next minute.....well.....not alive. I have to go to the cardiologist tomorrow to see what we do. It's obviously an acquired case because I'm on two different medicines that cause or make prolonged QT syndrome worse. I had to call the oncall pain Dr. because the meds are prescribed by my pain Dr., to see if I should go off the meds immediately but the oncall Dr. doesn't seem to think that I could've acquired the problem from the doses of the meds I'm on and instructed me that I should be "ok" staying on them until I see my regular pain Dr. sometime this week. Ok, fine buddy, but if my heart stops between now and then it's your ass. Gosh the jerk. So then he calls back 5 minutes later and asks why on a Saturday evening I had an EKG. Hello Buddy! What part of "I got taken to the ER with an irregular heart beat" did you not understand?? Lord.
So here's my situation right now. I still don't eat. Max a day is 300 calories. You can see through my teeth. We've already discussed the numb lower right leg and the being confined to bed practically 24 hours a day. I'd say realistically more like 22 hours a day but who's counting. I have zero energy and I think we could safely say that my life resembles an unwilling anorexic more than anything else. It's actually quite sad. I wonder at times if I was better off BEFORE the surgery. At least my cardiologist said I had at least 5 years to live. Heck I don't even know now if I'm guaranteed this next year with the way things are going. What I wouldn't give for a dam functional stomach! Sorry to be so macabre but it IS October.....the month of ghouls and goblins and truth be told......I'm really not in any kind of mood to beat around the bush and make things look all rosey when they're NOT. Some things will be happening in the near future.......hopefully big changes but I don't know if they will be changes for the good, the bad or just CHANGES. I miss all my friends here. I wish I could say hi more often but I've been putting what energy I have into my family. Please don't hesitate to drop me a line here or at my new email address [email protected].
Things have not gotten betterwhere my health is concerned. They have actually taken a nosedive. About 2 weeks ago my right lower leg went numb and the feeling has not come back. Saturday I was taken by ambulance to the ER because my heart was beating irregularly again. I thought that it was my potassium level dipping again but it wasn't. Turns out that I have a very serious heart problem. It's called prolonged QT syndrome. It's a problem with the rhythm of the heart and can cause a lethal ventricular arrythmia....in otherwards one minute I can be fine and the next minute.....well.....not alive. I have to go to the cardiologist tomorrow to see what we do. It's obviously an acquired case because I'm on two different medicines that cause or make prolonged QT syndrome worse. I had to call the oncall pain Dr. because the meds are prescribed by my pain Dr., to see if I should go off the meds immediately but the oncall Dr. doesn't seem to think that I could've acquired the problem from the doses of the meds I'm on and instructed me that I should be "ok" staying on them until I see my regular pain Dr. sometime this week. Ok, fine buddy, but if my heart stops between now and then it's your ass. Gosh the jerk. So then he calls back 5 minutes later and asks why on a Saturday evening I had an EKG. Hello Buddy! What part of "I got taken to the ER with an irregular heart beat" did you not understand?? Lord.
So here's my situation right now. I still don't eat. Max a day is 300 calories. You can see through my teeth. We've already discussed the numb lower right leg and the being confined to bed practically 24 hours a day. I'd say realistically more like 22 hours a day but who's counting. I have zero energy and I think we could safely say that my life resembles an unwilling anorexic more than anything else. It's actually quite sad. I wonder at times if I was better off BEFORE the surgery. At least my cardiologist said I had at least 5 years to live. Heck I don't even know now if I'm guaranteed this next year with the way things are going. What I wouldn't give for a dam functional stomach! Sorry to be so macabre but it IS October.....the month of ghouls and goblins and truth be told......I'm really not in any kind of mood to beat around the bush and make things look all rosey when they're NOT. Some things will be happening in the near future.......hopefully big changes but I don't know if they will be changes for the good, the bad or just CHANGES. I miss all my friends here. I wish I could say hi more often but I've been putting what energy I have into my family. Please don't hesitate to drop me a line here or at my new email address [email protected].
What Harry Potter character are you?
Jun 29, 2008
As Minerva McGonagall, your strict facade is complimented by a warm heart, and you always do what is for the greater good.
Ravenclaw
As a member of Ravenclaw House, you are diligent, intelligent and resourceful.
Click on the picture to find out what Harry Potter character YOU are!
Pain Dr. Update
Jun 29, 2008
So I went and saw my Pain Dr. on June 20th and told him how much they had increased my pain meds to and he said that we needed to try me on a longer acting medication. So he left my other stuff the way it was and I'm just to take it for breakthrough pain and he added Methadone to the mix for me to take. It seems to be working alright. I can eat a little better now, but I REALLY don't have any type of appetite. I eat only because I know my body needs the fuel or else I probably wouldn't eat. I don't know what it is, it's weird.......I can tolerate things better now, but have ZERO appetite. Before it was I'd be somewhat hungry, but not be able to tolerate anything! Bizarre. One new thing I "made up" that I really like is I take some Muenster cheese and 2 pieces of either chicken, turkey or black forest ham and roll it up and make like a cheese and meat 'roll up'. My pouch tolerates it and I really like it, plus it's pretty good protein! Other than that, the fridge is bare where I'm concerned. No more protein friendly things in there that I can eat and we're broke for a while. The kids still have plenty of food I'm thankful for that, but food that I can eat is GONE. Having to go back and forth to the hospital and the Dr. that is an hour and a half away is HARD with these gas prices and hit our pocketbook HARD this month!
Noah's birthday was June 26th. He turned 2!! I can't believe how big he is getting. He said his first FUNNY sentence that night too. He farted and then he said, "Eww, that's nasty" How funny is that?!?!? He had a nice, sweet little party here at home with just his family. We had a good time!
Well, that's all the update I have right now. Hopefully I'll stay out of the hospital for a while!
Noah's birthday was June 26th. He turned 2!! I can't believe how big he is getting. He said his first FUNNY sentence that night too. He farted and then he said, "Eww, that's nasty" How funny is that?!?!? He had a nice, sweet little party here at home with just his family. We had a good time!
Well, that's all the update I have right now. Hopefully I'll stay out of the hospital for a while!
Got out of the hospital again
Jun 18, 2008
Well, I got out of the hospital from the last time on Saturday June 14th. I wanted to be out in time for father's day! They pulled my PICC line although I wished they hadn't. I'm already declining again! I'm so freaking frustrated. I was getting almost 3,000 calories a day with my TPN. That's a lot of calories! They also almost doubled my pain meds because my pain is just out of control!
Father's Day was nice. My hubby got 3 collectible toys from the kids, we made him a neat little picture frame that will have a picture of the kids in it after we get our pictures done, and he got a new video game for his Xbox 360. LOL Then we put up the kiddie pool on the back deck and the kids went for a dip. My oldest put the slip and slide up too and they did that and the pool. They were all back and forth. So then I made some sandwiches for dinner......3 different kinds and cut them up into mini sandwiches and we had that for dinner. Daddy and I went and put our suits on and I sat out there with a drink and took pictures and then put my feet in the pool and swung the kids around in the water. Then we started pouring water on everyone's heads! Except mine!! he he We all got Daddy really good. It was funny. It was a good time. Got lots of pictures and some videos!
My "twin" is STILL in the hospital after having her reversal surgery on June 5th. She did NOT get any better as we had hoped. She's actually worse. She's requiring a LOT of pain meds as well as a ton of nausea meds that is not helping her much at all. She's not leaving the hospital until she has some answers, but she's probably going to get sent home on June 19th and she will have to go home doing TPN again. It's really sad that we're both in this shape. I know we're both massively frustrated.
Well, that's all the update I have for now. I'm going to see the pain Dr. on Friday. Let's hope to God he agrees with the increase of meds they gave me in the hospital or I'll end up right back there!
Father's Day was nice. My hubby got 3 collectible toys from the kids, we made him a neat little picture frame that will have a picture of the kids in it after we get our pictures done, and he got a new video game for his Xbox 360. LOL Then we put up the kiddie pool on the back deck and the kids went for a dip. My oldest put the slip and slide up too and they did that and the pool. They were all back and forth. So then I made some sandwiches for dinner......3 different kinds and cut them up into mini sandwiches and we had that for dinner. Daddy and I went and put our suits on and I sat out there with a drink and took pictures and then put my feet in the pool and swung the kids around in the water. Then we started pouring water on everyone's heads! Except mine!! he he We all got Daddy really good. It was funny. It was a good time. Got lots of pictures and some videos!
My "twin" is STILL in the hospital after having her reversal surgery on June 5th. She did NOT get any better as we had hoped. She's actually worse. She's requiring a LOT of pain meds as well as a ton of nausea meds that is not helping her much at all. She's not leaving the hospital until she has some answers, but she's probably going to get sent home on June 19th and she will have to go home doing TPN again. It's really sad that we're both in this shape. I know we're both massively frustrated.
Well, that's all the update I have for now. I'm going to see the pain Dr. on Friday. Let's hope to God he agrees with the increase of meds they gave me in the hospital or I'll end up right back there!
What's been going on in the past month
Jun 11, 2008
Well, I did go home from the hospital the last time on May 20th. My TPN did NOT get approved. I was so mad. Even though I was requiring FULL calories, Medicare said I had to be missing part of my digestive system or not be able to eat AT ALL. Well big whoop. What if I can't eat ENOUGH to sustain myself? Just too dang bad??? LORD! Insurance companies are so dumb. My surgeon tried and tried and tried to get it approved bless his heart, but they didn't even listen to him. UGH! Frustrating.
So I still had the PICC line and I took care of it. Flushed it everyday and changed the dressings several times to keep it clean. I had a feeling it would come in handy soon. And OH how right I was!!!
On June 6th, I was back in the hospital AGAIN and that is STILL where I sit. I'm getting TPN 24 hours a day, plus I'm getting better pain control thank God because I started having a horrible fibro flare on May 31st and I thought I was going to come unglued with all the pain.
So tomorrow I'm going to be getting another scope. They are going to take some biopsies to see if I have an virus action going on down there. Lord let's hope not. I don't need anything ELSE going on that's funky!
I do feel a lot better today than I have in a LONG time. My meds got increased because every 6 hours was not cutting it so now it's every 4 hours. MUCH better pain control. AND since all of this TPN has been going in my system, I actually feel more energized!! Gee it's only taken 5 days of it! I am glad I came in though. I REALLY needed the nutrition and I'm starting to feel a whole lot better. A couple days of this and I'll be good to go I think. Now if only I could eat more!!!! Gosh I would've never said that before surgery huh?? LOL
In other news, my surgery 'twin' that had surgery 4 months after me but had the exact same symptoms as I did (just 4 months behind.....well kinda! LOL), she had a major procedure done. A last ditch effort so to speak. She had her surgery REVERSED!! It was supposed to be reversed and then revised into a sleeve but that didn't happen. She had had a g-tube in for a long time and apparently the place where the g-tube was made a natural anastomosis so it looks like she has 2 stomachs almost! She's got her pouch and it was hooked back up to the spot where her g-tube was and then her old stomach is below it. So it's KIND of like a baseball sitting on top of a small cylinder leading into a large rounded banana. It's basically like she has a naturally made lapband because of the anastomosis from the old patch to the old stomach. Weird, but cool.
She's still having problems with a lot of pain and nausea and that makes me sad. We visit each other and take walks together while we're here, which makes it easier to get through this ordeal, but I wish neither one of us had to go through what we are. I'm worried for her because this was basically her last ditch effort to be 'normal' again. She's on 3 different pain killers and 3 different nausea meds. It's just not slicing the bacon for her. I feel so sad for her because I KNOW how much she wants to be well and it definitely hurts my heart SO MUCH to watch her talk about the misery she is in! Sometimes I don't know what to say. I just sit and listen because sometimes we just NEED somebody to listen. Other times I wish I could just reach through the phone and hug her or something. It's like I personally want to make her feel better so she can have her life back. I hope and pray to GOD that this surgery fixes my dear, sweet friend that I've grown to love SO much over the past few months. She's a true blessing and I KNOW that she will use this experience for good, but I wish that her suffering would stop so she could enjoy life more and not have to deal with the constant struggles of eating, staying hydrated, fighting pain and nausea. If anyone is reading this, PLEASE say a prayer for my sweet friend to get BETTER! I hate seeing her like this almost as bad as I hate being like I am!.
So after her surgical experience, which I must admit I was eagerly anticipating because my 'twin' was yet again the guinea pig, I was hoping that there would be better results. I can understand the post operative pain but I TRULY think her pain is more. And her nausea is almost unrelenting, something that I dont quite have so much of, but it's there sometimes. I guess what I'm trying to say is that I had a lot riding on her surgery too. I mean, we have the exact same problems so if reversing and revising the surgery worked on her, then there is a greater chance that it would've worked for me too! But since it's looking like this was not successful, I don't know what I'm going to do or what hope I have of getting myself fixed! Scary!
Thanks to all of you who have stuck in here with me. I really appreciate it!!
So I still had the PICC line and I took care of it. Flushed it everyday and changed the dressings several times to keep it clean. I had a feeling it would come in handy soon. And OH how right I was!!!
On June 6th, I was back in the hospital AGAIN and that is STILL where I sit. I'm getting TPN 24 hours a day, plus I'm getting better pain control thank God because I started having a horrible fibro flare on May 31st and I thought I was going to come unglued with all the pain.
So tomorrow I'm going to be getting another scope. They are going to take some biopsies to see if I have an virus action going on down there. Lord let's hope not. I don't need anything ELSE going on that's funky!
I do feel a lot better today than I have in a LONG time. My meds got increased because every 6 hours was not cutting it so now it's every 4 hours. MUCH better pain control. AND since all of this TPN has been going in my system, I actually feel more energized!! Gee it's only taken 5 days of it! I am glad I came in though. I REALLY needed the nutrition and I'm starting to feel a whole lot better. A couple days of this and I'll be good to go I think. Now if only I could eat more!!!! Gosh I would've never said that before surgery huh?? LOL
In other news, my surgery 'twin' that had surgery 4 months after me but had the exact same symptoms as I did (just 4 months behind.....well kinda! LOL), she had a major procedure done. A last ditch effort so to speak. She had her surgery REVERSED!! It was supposed to be reversed and then revised into a sleeve but that didn't happen. She had had a g-tube in for a long time and apparently the place where the g-tube was made a natural anastomosis so it looks like she has 2 stomachs almost! She's got her pouch and it was hooked back up to the spot where her g-tube was and then her old stomach is below it. So it's KIND of like a baseball sitting on top of a small cylinder leading into a large rounded banana. It's basically like she has a naturally made lapband because of the anastomosis from the old patch to the old stomach. Weird, but cool.
She's still having problems with a lot of pain and nausea and that makes me sad. We visit each other and take walks together while we're here, which makes it easier to get through this ordeal, but I wish neither one of us had to go through what we are. I'm worried for her because this was basically her last ditch effort to be 'normal' again. She's on 3 different pain killers and 3 different nausea meds. It's just not slicing the bacon for her. I feel so sad for her because I KNOW how much she wants to be well and it definitely hurts my heart SO MUCH to watch her talk about the misery she is in! Sometimes I don't know what to say. I just sit and listen because sometimes we just NEED somebody to listen. Other times I wish I could just reach through the phone and hug her or something. It's like I personally want to make her feel better so she can have her life back. I hope and pray to GOD that this surgery fixes my dear, sweet friend that I've grown to love SO much over the past few months. She's a true blessing and I KNOW that she will use this experience for good, but I wish that her suffering would stop so she could enjoy life more and not have to deal with the constant struggles of eating, staying hydrated, fighting pain and nausea. If anyone is reading this, PLEASE say a prayer for my sweet friend to get BETTER! I hate seeing her like this almost as bad as I hate being like I am!.
So after her surgical experience, which I must admit I was eagerly anticipating because my 'twin' was yet again the guinea pig, I was hoping that there would be better results. I can understand the post operative pain but I TRULY think her pain is more. And her nausea is almost unrelenting, something that I dont quite have so much of, but it's there sometimes. I guess what I'm trying to say is that I had a lot riding on her surgery too. I mean, we have the exact same problems so if reversing and revising the surgery worked on her, then there is a greater chance that it would've worked for me too! But since it's looking like this was not successful, I don't know what I'm going to do or what hope I have of getting myself fixed! Scary!
Thanks to all of you who have stuck in here with me. I really appreciate it!!
Small Hospital Update
May 19, 2008
Well I THOUGHT I was going to get to go home today. Nope. Still sitting here. Guess this will be an 11 day hospital trip! lol Apparently they didn't all the arrangements for home health yet.
I did finally get my PICC line on Saturday morning and they started my 12 HOUR
feeding in it that night. So now I'm on night 3 of the TPN feeding and so far I feel pretty ok. They have to check my blood sugar every 6 hours and gosh I hate getting my finger pricked! And doing this at home means dragging around a pump for 12 hours OR staying in bed for 12 hours. Lordy, gotta love it.
I think I just have to be on it for 2 weeks and then we'll reevaluate from there. So I hope it does what it's supposed to and that I don't have to be on it for a long time or else I'm REALLY going to just ask him to convert me to the Sleeve!
So I think I am most likely going home tomorrow, God I hope I am anyway. They should definitely have my home health set up and worked out by then, hopefully. Well, that's just my lovely update for what it's worth. Have a good week!
P.S. Forgot to mention that in the past couple of days since starting my TPN, I have not been bradycardic ONCE!!!! That is really awesome news!! I KNEW that just had to have been all about diet!
I did finally get my PICC line on Saturday morning and they started my 12 HOUR
feeding in it that night. So now I'm on night 3 of the TPN feeding and so far I feel pretty ok. They have to check my blood sugar every 6 hours and gosh I hate getting my finger pricked! And doing this at home means dragging around a pump for 12 hours OR staying in bed for 12 hours. Lordy, gotta love it.I think I just have to be on it for 2 weeks and then we'll reevaluate from there. So I hope it does what it's supposed to and that I don't have to be on it for a long time or else I'm REALLY going to just ask him to convert me to the Sleeve!
So I think I am most likely going home tomorrow, God I hope I am anyway. They should definitely have my home health set up and worked out by then, hopefully. Well, that's just my lovely update for what it's worth. Have a good week!
P.S. Forgot to mention that in the past couple of days since starting my TPN, I have not been bradycardic ONCE!!!! That is really awesome news!! I KNEW that just had to have been all about diet!
Some Good News!! Hospital Update!
May 16, 2008
Well hi my friends!
I got a couple pieces of good news today. First off, they did an echo of my heart to check heart function. Some of you may remember that in March of last year right before my surgery, I found out that my heart was failing and that I had cardiomyopathy. Well, he wanted to see if the malnutrition was effecting my heart. I'm happy to report that my heart is no longer enlarged. It is normal sized again. AND it is functioning normally again!! No more heart failure!! Thank you GOD!!!!!! I was SO happy to hear that.
I am suffering from bradycardia. My resting heart rate is sitting in the low 50's - high 40's. Sometimes it dips into the low 40's, but it didn't dip THAT low during my echo but sometimes it does when they take my BP so they have to make me sit up and yada yada yada and take it again. I have a VERY strong feeling that my low heart rate lead to me blacking out behind the wheel and causing my wreck a few weeks ago. When your heart rate gets low like that, it can cause not enough oxygen to get to the brain and thus lead to passing out. I really think that is what happened to me that day. So, I think if I can get the CORRECT nutrition going on in my body, I'll be able to get my heart rate moving back up into the normal range and MAYBE I can start driving again!
How am I going to get the right balance of nutrition though? Well, my other piece of good news is that I *think* my home TPN is going to get approved! My Dr. has ordered it and the dietician is working on the caloric requirements so we'll see what happens tomorrow. They aren't going to come put the PICC line in me until they know for sure if my insurance is going to approve it. My insurance requires you to require a certain amount of calories per kilo, but the dietician thinks that I will meet that with no problem. They have me NPO (nothing by mouth) now, since dinner time and I'll be this way until I go home. Boo! But then my Dr. called and wanted the PICC put in tonight and the tube feeding to start TONIGHT, but the IV team didn't come up tonight to do it, so I guess that's not happening. Maybe tomorrow. I can't wait til they get it all set up so I can go HOME!!
On to another piece of news.....my 'twin' is in the hospital too on the SAME FLOOR with me!! She was admitted three days after I was. Turns out we're both going to be getting TPN. It sucks that she's sick too, but it sure is comforting to have someone that KNOWS exactly what you're going through and can empathize with you and understand what you're feeling. I wish we were both back to normal, but we both have a feeling that all this will end up with us having our surgeries reversed and revised into sleeves. I honestly think it will solve our problems. I'm just not brave enough at this point to go ahead with it. It's a HUGE surgery and he's never done it before. But that's still a ways off yet. Now I just have to worry about getting this PICC and TPN and GO HOME!!!
Thanks for listening and all the continued support!
I got a couple pieces of good news today. First off, they did an echo of my heart to check heart function. Some of you may remember that in March of last year right before my surgery, I found out that my heart was failing and that I had cardiomyopathy. Well, he wanted to see if the malnutrition was effecting my heart. I'm happy to report that my heart is no longer enlarged. It is normal sized again. AND it is functioning normally again!! No more heart failure!! Thank you GOD!!!!!! I was SO happy to hear that.
I am suffering from bradycardia. My resting heart rate is sitting in the low 50's - high 40's. Sometimes it dips into the low 40's, but it didn't dip THAT low during my echo but sometimes it does when they take my BP so they have to make me sit up and yada yada yada and take it again. I have a VERY strong feeling that my low heart rate lead to me blacking out behind the wheel and causing my wreck a few weeks ago. When your heart rate gets low like that, it can cause not enough oxygen to get to the brain and thus lead to passing out. I really think that is what happened to me that day. So, I think if I can get the CORRECT nutrition going on in my body, I'll be able to get my heart rate moving back up into the normal range and MAYBE I can start driving again!
How am I going to get the right balance of nutrition though? Well, my other piece of good news is that I *think* my home TPN is going to get approved! My Dr. has ordered it and the dietician is working on the caloric requirements so we'll see what happens tomorrow. They aren't going to come put the PICC line in me until they know for sure if my insurance is going to approve it. My insurance requires you to require a certain amount of calories per kilo, but the dietician thinks that I will meet that with no problem. They have me NPO (nothing by mouth) now, since dinner time and I'll be this way until I go home. Boo! But then my Dr. called and wanted the PICC put in tonight and the tube feeding to start TONIGHT, but the IV team didn't come up tonight to do it, so I guess that's not happening. Maybe tomorrow. I can't wait til they get it all set up so I can go HOME!!
On to another piece of news.....my 'twin' is in the hospital too on the SAME FLOOR with me!! She was admitted three days after I was. Turns out we're both going to be getting TPN. It sucks that she's sick too, but it sure is comforting to have someone that KNOWS exactly what you're going through and can empathize with you and understand what you're feeling. I wish we were both back to normal, but we both have a feeling that all this will end up with us having our surgeries reversed and revised into sleeves. I honestly think it will solve our problems. I'm just not brave enough at this point to go ahead with it. It's a HUGE surgery and he's never done it before. But that's still a ways off yet. Now I just have to worry about getting this PICC and TPN and GO HOME!!!
Thanks for listening and all the continued support!
About Me
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Nov 02, 2004
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