pickledfairy

Jackie, I can totally relate on the nausea issue. I have severe gastroparesis and am dependent on TPN for nutrition, but the nausea is relentless. I have tried many antiemetics and due to having dystonia I can only take a few safely. I found that when I switched from 8mg of Zofran pills to 8mg of Zofran ODT (orally disintergrating tablets) I can usually make it 4-5 hours between doses. It certainly works more quickly. Sometimes I have to take Benadryl too, but hate to because it makes me so drowsy. This is just a thought, since I wasn't sure which form of Zofran you were taking. I wish you all the best, Sheridan

Just a little note to let you know that I will be thinking of you. Praying that this is a quick admission and that they get those little beasties under control quickly!! I will be sending you lots of healing energy!!! Sheridan

I am not necessarily on them prn but I am able to titrate them as needed because I struggle with controlling my heart rates (usually 90 sitting and upper 100s standing) with out them but my BPs have changed significantly over the past year (used to be always high now usually run pretty low) So, now I have a 10mg tab of inderal that I can split and take only 5mgs when my BP is running too low. I used to have to be on upwards of 300mg bid of toprol. I still don't get great HR control on this low dose, but it beats syncope and presyncope all the time. They are thinking right now my BPs may be a result of being very anemic, but no doc seems to want to take responsibility for treating it...grr...seeing neuro, GI, and PCP this week...someone is going to take this problem on! Sheridan

I have always been crippled with motion sickness from the age of two. I can't even play video games...my former patients used to think it was hilarious and would always challenge me to a game knowing they could beat the pants of me!!

So sorry to hear about you being in so much pain Angela...sounds like Dr. C has a lot of explaining to do!! I wanted to tell you that my device does make my whole stomach jump at times and especially in certain positions, it is very disconcerting and uncomfortable. I assume it is because it is "maxed out" in terms of voltage, so I have never brought it up as a concern, perhaps I should since no one has seen the device do such a thing. I had pain at a "9" for about a week after surgery, but not spasming type pain like yours. Mine was more like when I would move I could feel the device shift in my body...creepy and painful. I will be praying for pain relief and that the Medtronics company will be able to help you before Dr. C. gets his buns back in town. He is kind of on my poo poo list right now too...I think it has someting to do with the new secretary and him not getting messages. Praying hard for your relief. Sheridan

Tearose, So sorry to hear you experienced such a scary episode. I hope the bladder and heart issues can be taken care of swiftly. Thinking of you. Sheridan

Thank-you all for your warm wishes and positive thoughts!! As of this morning things have changed completely! My doc was called by my insurance company today and was told that they do not cover nutritional support of any kind. My doc is trying to appeal, but we don't know what the outcome will be. So, no line on Friday. I am very disappointed and can't help but wonder how much weight I have to lose before I can catch a break (now down 55lbs in 5 months). I just want to halt this weight loss and gain back some energy....I want to be able to walk up the stairs or get out of the house for an appointment and not have to recover in bed for days afterwards! Medicare doesn't kick in until June (which I hear has its own issues with nutritional support) and if we wait until then, at this rate I will be a skeleton. Sunfish~thanks so much for all of your input, it has given me a lot to think about in terms of the g/J tube issue, and now I have the time to think about it all. I'm glad it is working for you right now and giving you the ability to gain back some weight. Even if it doesn't last for the long term, like you said at least you have given your liver (and yoursefl) a bit of a break from the TPN. Thanks again for your support eveyone....it means a lot. I will keep you posted. Sheridan

Thanks for the warm thoughts!! Sunfish~ We have discussed a G-J tube or just J tube, but I have severe colonic dismotility as well as small bowel bacterial overgrowth that my doc feels would interfere with my getting adequate nutritional needs from a feeding tube. My surgeon did not think a PICC was the best option for me because of the risk of clots and as he put it "I have more patients who have to have multiple PICCs in a short time period than those with a Hickman or port-a-cath". We originally talked about a port, but he thought a Hickman would be best as the port would have to be accessed 24/7 (with needle changes of course) and would not be any less of a risk than the Hickman. Thanks for the thoughts about home health and finding the "right" nurse. Luckily, I worked in pediatric oncology before getting sick, so I am at least comfortable being around central lines and have also done a lot of medical play with my patients surrounding dressing changes etc. Although I have to admit it is completely different when it is yourself that will have to be dealing with the line. I hope I answered you questions....going to check out the Oley foundation web page! Sheridan

Hello DINET friends, I have not been active on the boards for a bit now, as I just can't seem to get the energy to sit up at the computer long enough to read as well as reply...sorry for this lack of participation. I am continuing to have severe problems with my gastroapresis and "stroke like episodes", which has been frustrating to say the least. My docs have decided it is time to start TPN (total parental nutrition) and I will be admitted on Friday at 1pm to have my Hickman catheter placed and to start the TPN. I could use all of the positive thoughts and prayers I can get, I am feeling a bit overhwelmed at the changes happening. Thanks in advance for your support...you all are a great group of people and I am blessed to be a part of this community. Sheridan

Good luck Amy...we will be thinking of you. Sheridan

Good Luck Angela!!!!!!

WELCOME MAGGY!!! I am so glad you have found us. You will find this is a very compassionate and informative group. Sheridan

Just wanted you to know I am thinking about you Melissa.

Congratulations Michele....what an amazing accomplishment. Your DINET friends are Very proud of you!!!!

Pat and Doctorguest, Thank-you so much for your replies. I am glad to hear that the PO tablets are not "horse pills" and will certainly be discussing them with my doctor instead of the IM injections. It is very encouraging to hear of the fgood results from oral supplementation. Doctorguest-My PCP says that it is a shot in the dark that the B12 is the cause of the episodes, but we are still hoping . I had a sleep deprived EEG yesterday, perhaps that will reveal answers as well. My neuro thinks that the episodes are a result of poor perfusion to the brain brought on by dehydration from the GP which is compounded by the fact that I was already hypovolemic to begin with (very low in both plasma and red cell volume). The explanation makes sense. He thinks IV fluids daily will help, but we are holding off in hopes that my gastric pacer will soon begin to work (have had it for two months now) and I will be able to drink more PO. I will keep you posted. Thanks again, Sheridan