posted
Hi everyone..I was just wondering if anyone had any opinions as to whether it would be safe for me to stop TPN when I hit 90 lbs. I haven't vomited up my food in a week, and while I am not eating a huge amount, I think I am eating enough now where I won't precipitously lose again.
I just cannot take this infusing for 12 hrs a day. It is too much and it is annoying and the TPN itself is causing side effects. I am 5 feet 3 inches tall, so 90 lbs isn't that thin.
Any thoughts/advice? Thanks in advance. Jess.
Posts: 870 | From ct | Registered: Nov 2012
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posted
You are the only one who can answer this question. Listen to your body. If you feel the need to get off TPN because of side effects, you can stop and see how things go.
90 lbs is not much for your height though. Ten pounds more would be better. You can always go back on the TPN if you can't maintain your weight.
Glad you are able to eat small amounts of food now and keep it down.
-------------------- Faithful
Just sharing my experience, I am not a doctor. Posts: 2682 | From Colorado | Registered: Oct 2009
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posted
Faithful, thanks. Yes I know 90 lbs isnt much but its not immediately dangerous and I just cannot deal with this TPN for much longer. It is causing weird side effects and it takes up to 12 hrs a day to infuse and I have a new man in my life and its kind of hard to have a boyfriend and be hooked up to this damn thing for hrs at a clip every day/night.
And yes I can take small amounts of food and keep it down now. I think it is because of adopting a vegan diet, to be honest. Having no animal products and lots of complex carbs is helping. Thanks. Jess.
Posts: 870 | From ct | Registered: Nov 2012
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Ellen101
Frequent Contributor (1K+ posts)
Member # 35432
posted
What does your doctor say?
Posts: 1748 | From United States | Registered: Dec 2011
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posted
I see him on Monday. He wants me to stay on it for a while, but I just can't take this crap. Jess.
Posts: 870 | From ct | Registered: Nov 2012
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You poor thing! I can't imagine how hard it must be to be hooked to to that for so long every day. I often read your posts nd you have been through so much, I am happy you. Are gaining weight and strength:). That being said, 90 lbs still seems like not a lot for 5'3. I am only 4'11 and have lost weight bc of awful reflux recently (I hate Lyme) and literally EVERYONE is commenting on how I am way too skinny (which I know). If it were me, I would try and gain another 10 pounds before going off, but I know it must be easier said than done. Just an idea but have you tried protein powders? I am a Allergic to milk so got an egg white protein powder that I have been putting in my shakes and it is helping with the weight gain!
Posts: 200 | From Boston | Registered: Sep 2010
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
Jess, 90lbs is still dangerously low. Please don't stop the TPN yet. Hang in there a little longer. Let it help you get to a safe healthy weight so that you can have a fighting chance.
This is the National Institutes of Health BMI chart. You can see that for your height, you will need to weigh at least 107 lbs to begin to be considered a healthy weight.
Remember, you have to be able to eat enough calories to replace what the TPN has been giving you every day. You need to be able to maintain your weight and ideally start to gain more muscle mass. You don't want do barely be able to eat again and start losing.
When I've struggled with my weight my doctor has told me that he would hospitalize me to stabilize me if my weight dropped to 100lbs. I am 5ft 3.5in tall.
Being too thin is a huge stress on your body, especially your heart and your brain. Please stay on your nutrition until you are healthier and more stable.
We care about you here and want to see you well.
Posts: 5237 | From here | Registered: Nov 2007
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posted
Thanks everyone..Sammy, I just CAN'T DO THIS ANYMORE. I will seriously consider staying on the TPN awhile longer, but even I have my limits.
I have been like a good soldier this whole time, doing everything that I am told to do by drs, and this is the one time where I just can't do it.
I would rather be waif thin and off this damn stuff than be plump and robust and hooked up half my day.
I just hate this so much. Jess.
Posts: 870 | From ct | Registered: Nov 2012
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MannaMe
Frequent Contributor (1K+ posts)
Member # 33330
posted
Jess, Would it be possible to cut back on the hours per day, rather than stop completely?
I do think it would be in your best interest to continue until you have gained more weight so you can have a better chance at keeping what you gained.
My nephew had to be on TPN for quite awhile. First it was most of his waking hours and as he gained he was able to cut back on the hours he needed it.
Posts: 2252 | From USA | Registered: Aug 2011
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posted
Manna-the ONLY way I will stay on this stuff is if I can cut down on the infusing time. I cannot do 12 hours a day. I have a job, I have a boyfriend, I have a life despite being sick and I cannot do this.
Thanks. Jess.
Posts: 870 | From ct | Registered: Nov 2012
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Ellen101
Frequent Contributor (1K+ posts)
Member # 35432
posted
You will be starting abx after, right? If you are not at a good weight you will have a really tough time dealing with the herxing from the abx and may lose what you just gained putting you back to square one.
There is probably a pretty good chance you will drop some weight while taking abx due to some of the side effects, starting out very under weight to begin with you will not be giving yourself a fighting chance.
I would hate to see you go back to where you started. I know it's hard, but challenges such as this alot of times bring couples closer together.
Posts: 1748 | From United States | Registered: Dec 2011
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posted
Ellen-its just too much though. If the dr is willing to cut the amount of hours that I am on the TPN then I will consider continuing until I hit 100 pounds. Otherwise, I am done when I hit 90 (I am 87 lbs right now).
I honestly would rather have the lyme kill me than be hooked up to this damn stuff for 12 hrs a day. THAT is how fed up I am. Thank you for the support, I appreciate it so much. I am just so fed up with this situation. And its unfair to my boyfriend and its unfair to me and UGHHH. Jess.
Posts: 870 | From ct | Registered: Nov 2012
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posted
Lymetoo-yes he is fine with it, but still....he is a young and healthy man and its not exactly the most attractive thing in the world to have a girlfriend with a picc line in her arm who needs to put liquid nutrients into her system for 12 hrs a day because she is too skinny and sickly to eat like a normal person.
IDK I am just having THE hardest time adjusting to this stuff...it is really making me upset and frustrated. And yes I agree-6 hrs a day would be MUCH better than what I am doing right now. Jess.
Posts: 870 | From ct | Registered: Nov 2012
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Is it possible to do the TPN overnight? I know a boy who does it 8pm-8am every day.
-------------------- Garden
"Fibromylagia" for 8+ years Pos IgeneX WB per both Igenex and CDC Pos Neuroscience MyLymeImmuneID Started tx for Lyme in March 2011 Posts: 245 | From East Coast | Registered: May 2011
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posted
garden, thanks. I do the TPN overnight oftentimes but still, for me, 12 hrs a day is just WAY TOO MUCH. I see my llmd tmrw and I am going to demand that he either reduce my hrs on the TPN or I want off it entirely. Jess.
Posts: 870 | From ct | Registered: Nov 2012
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Kudzuslipper
Frequent Contributor (1K+ posts)
Member # 31915
posted
One more month. What's one more month? Better than staying sick. Just do it Jess. You are doing south better.please continue.
Posts: 1728 | From USA | Registered: May 2011
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posted
Hey kudzu-thanks for the encouragement. I plan to tell my LLMD tmrw that I will do up to 6 hrs a day of the TPN, but that I just cannot do more than that. I need a break a little. Thanks. Jess.
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I'm so sorry you are dealing with this.
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