This is just getting too hard!! on October 16, 2008 10:29 pm
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!
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Hospital Update #1 on October 12, 2008 12:34 am
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!
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My life is on the line on October 7, 2008 4:46 pm
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.
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What a long time it's been! on October 6, 2008 8:57 pm
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 dragonflyallie@hotmail.com.
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What Harry Potter character are you? on June 30, 2008 12:09 am
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!
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