TPN at home?

Issue is she is brand new into my case. My real PCP left jan 1. This oine came in with her agenda and didnot notice the 20 lb weuight lkoss the decayed teeth dry eyes skin issues muscle wasting all the time limits of this blood work sliding fast.

The stioma has a drain tube. I cvannot eat any solids. Only liquids that will squeeze thru the drain tube. It is like a narrow straw. Rosemary

Post Edited (esoR) : 1/25/2013 6:59:02 AM (GMT-7)

Rosemary-
I would just like to reiterate what seashell and lovetoski said. I think that you must must settle on one team of doctors as the previous approach hasn't seemed to give you good results. You have to settle in and give a team of doctors a chance. It seems like this new PCP is willing to help you and coordinate your care. I think it is in your best interests to go in there with an open mind. Try and forget about all the bad things that have happened in your history. And don't dwell on them when meeting with her. Those things in the past cannot be changed. You need help with your situation as it is now. So you must allow her to look at your health as it is then and there when she is seeing you. Allow her to take charge and work with these other doctors to get you into a better state of health.

I know for me.. when I have doctors from several realms working together and communicating with each other my care is vastly improved. I also rely heavily on my PCP (who isn't even in the same medical system as most of my specialists) to advise and guide me and raise red flags to my specialist doctors when it needs to be done.

So Rosemary I know you are very very concerned, but somehow, someway.. I think if you could maybe just step back a bit, and try to go and meet your PCP with an open and peaceful mind .. that it may be a way for things to get better for you.

also.. please please don't take this the wrong way... but if you aren't already doing this.. it may be a good time for you to talk with a therapist. You have been through so much medically, that somehow a therapist may be able to help you get your mind in a better place which can definitely help improve things physically. I have and am still going through awful terrible endless things myself. And with the suggestion of some people on this site I finally bit the bullet and found a therapist last fall. She has really helped me so much with dealing with my emotions from chronic health issues, endless surgeries and numerous and ongoing complications, and navigating my medical care. Just a thought for you rosemary.
wishing you the best.

I am starving to death literally as I am uinable to take in oral nutrition due to nothing able to come out of my stoma. It is an in and out issue. The advice makes sense. But I am in severe malnyutrition mode. Lucky you were given TPN shen you could not eat right? RJ

She SAW ME! At 115 lb weigh in. am still 5'7". That was wednesday. Today I am at 110. I have the dry cracked skin, the muscle wasting, ribs protruding, swollen abdomen, swelling at ankles, the stoma drain tube, the thinning hair, dizzy, disturbed gait, brittle nails, am dehydrated, the swollen eyelids and am having sight issues, my teeth are developing very long brown stains, bone thinning, mouth sores, eyelid swelling, etc.

Nobody else who cannot eat does not get TPN eventually. There have been multiple people on here as a matter of fact during rough recoveries from surgeries having been put on TPN after only ONE WEEK of not being able to eat. I have had to go 2 months so far. This is heading into major trouble if I don't get that TPN Tuesday. Sure it has risks but so does starvation. I am going to the appt still. The TPN people only need a doc's order and it does not have to be a PCP. Plus there are other PCP's! I am going to ask a LOT of questions and IF there is anything more orally that can be done, I would of course try that first. BUT i have been doing all these high fat high cal boosts that I have to dilute to get thru the drain tube and am now down to 110. so they may not even be absorbing. One has to have some solid in their diet. Fat as in oil bunges up the drain tube so I likely am not absorbing my fat soluble vitamins or calcium hence the tooth decay.

I will send that pic to you Christine. Thx. RJ

My old PCP when I had the first stoma stenosis, and had trouble getting help and could not even drink, she kept me hydrated all Memorial Day weekend until my first stoma revision June 4. SOOO too bad that one did not last! At least it did for 3 months! The old PCP also had said "If nobody is going to redo that stoma then we need to make a plan for nutrition" with me unable to eat or drink at all with that first stenosis, I knew she had in mind TPN. What a time for my old PCP to move to another job. She was great! She just dealt with the immediate problem of freaky stuff and helped me survive. The PCP's job I would say.

Christine I think I remember your email address. I will try and send a pic of me from my Black Berry. You will be horrified. I look like a starving person. I have to have daily care workers and I have them wear a mask as my immunities must be shot. They are all horrified that someone is being left to starve. I force myself to walk my block every day at least once but need someone with me as I am so dizzy.

RJ

The pic is a good idea! I will mail her a "before" pic. I have had to beg for blood work and had done at mointhly intervals but I showed her how it ghas gone down. So for my closed stoma with drain tube thgat clogs, the oral part would likely still be the boost vhc very high cal shakes diluted then the tpn. I do agree that keeping the gut gouing with something in some form is so needed. Weight the PCP has in her records, I think I will wriute out weights by month. Enclose the "before" pic and send her all progression of blood tests. She said she had no access from blood work from oither places. Everywhere sends a copy to ones PCP. She was so in a mood that she was not even looking. I pray I do not catch anything before or whiule on the tpn. Ones immunities can only take just so much. Did you lose your sight and your teeth? Rosemary

Rosemary, I found, by accident, that coconut oil, is like a freaking laxative on me. Have you tried that to see if it will help to move the ensure or boost through? Maybe you can drink the high protein, high calorie drinks and add the coconut oil, which is a very good fat by the way???? It is worth a try at this time. You need nutrition asap.

My vision went very blurry rosemary I used eye drops available from pharmacy and used them three times a day it did help somewhat , my teeth are stained and still painful especially when eating cold and some hot things I do suffer from raynauds and it affects my mouth as well so not sure if it's more from that or my other disease I have a lot of heartburn issues with acid regurgitation and this causes a a lot of staining on my teeth and strips the enamel off like seashell said coconut oil is supposed to be very good for you so try that to get things moving when I drink a liquid antacid it really makes my gut work I end up emptying Many times but if your already dehydrated it's maybe not such a good idea for you lucky