FATHER on TPN

hello everyone,

my father is back in the hospital the 12th readmission. quick hx, my dad had elective gall bladder surgery on june 7,2007 stayed in the hosp for close to 3 mons. my dad was discharged on aug 29 you do the math. my dad has had a GJ tube but was d/c. he was dx with GP. this latest admit he will be going home (parents have been living with me since the initial discharge in aug.) withTPN. the past discharges he would @ time have a picc line but only for antibiotics. so this time he will be on TPN. i was wondering if anyone on TPN how has it been? what should i watch for? are you guys still able to eat? his medical doc says dont' take anything except for his meds with sips of water. but i spoke with his GI doc he says if he says he's hungry give him something only clears.

my dad has always complained of hiccups then eventually vomits or spits up. i'm so overwhelmed. i have 4 young kids. a 6y/o, 5y/o, 4y/o and a little girl who will be turning 1.

my dad has had never had pain only the nausea and vomitting. anyone with TPN do you guys check your bld sugar? who helps you guys with the TPN? it is so frustrating coz this all happened because the surgeon cut my dad's common bile duct during the surgeon to remove his gall bladder.

this has gone for almost 1 yr and i feel i don't see the light in the tunnel. i'm trying to keep my spirts high and have faith but it is hard. this has taken a tole on my dad. he is super depressed. i feel the meds he takes are not working. getting to see his psych doc is hard coz everytime i make an appt for him he misses it coz he is in the hosp.

right now i'm just venting....i want to hear from you guys who are living with the disease. how do you cope? are you guys able to go out? my dad is 69 and the only time he gets out is when he has doc appts or heading for the hosp.

hope to hear from you guys.....

mariel

By deb1
Posted March 23, 2008 at 10:37 am

Hello-I too developed GP after gallbladder surgery this past June 07. I first started on tube feeds-didn't work-Now on TPN. Yes, you do check your blood sugar-although I'll admit I don't do it very often. My bile duct was not cut. I think you will find alot of people get gp after GB surgery for some reason-not necessarily because of the bile duct injury. If your Dad had a bile duct injury-I hope you guys are seeking legal counsel. As my family goes to church I am sitting at home with my picc line and tubes. I have 2 children 3 and 6. So I know it's hard for you and your Dad. It really makes me wonder what they do that causes this with gallbladder surgery. How come it doesn't happen to everyone? I'll be thinking of your DAD. I know it's very depressing because your life is stolen from you based on some surgeon telling you-you will be fine-it's a simple operation. I do not vomit. I do get the pain and naseau. I really don't eat except for small sips of gatorade.

By mariel
Posted March 23, 2008 at 11:02 am

happy easter deb1...how long have you been on TPN? since june 07? when you say you are in pain where in the pain? do you have reflux, GERD? i'm sorry i'm asking alot of personal question i hope you dont mind? what meds do you take?

as for my dad he is in the hosp. on this admission he is not acting him self. he is hallucinating, fijetting, acting weird. they had placed him on phenergan and reglan IV around the clock. i the phenergan did this. so we got that dc'd. the reglan is stopped since he is not eating wont need that for now. my dad's meds are only 2 antidepressant (prozac and welbutin) i'm not sure if those are working. we might have to get them changed or new dose. his carafate, nexium ( just started that about 1 wk ago), lopressor( heart and BP med), and insulin as needed.

by the way your PICC line who changes the dressing and flushes the line? do you have a double lumen PICC line (you have 2 lines sticking out of your PICC line)? my father has a double lumen line coz my dad is such a hard stick for bld draw they placed a double lumen. do you have a home health nurse come to your home? i'm just wondering coz i know a home health nurse will be coming i think once a wk. i think this will be only for a few weeks or months. can i ask how you protect your PICC line when you take a shower? how many hours are you only TPN? my dad i think will be on for 16hrs (initially they told me 12 hrs).

my prayers are with your family and with everyone dealing with GP.

thanks for responding...mariel

By chewy1
Posted March 23, 2008 at 5:30 pm

Mariel,
I just wanted to comment on the fidgeting and acting strange. Could the problem be the Reglan instead of the Phenergan? I can't take Reglan because it causes me to fidget, twitch and jerk. The neurologist told me that Reglan is bad about causing Parkinson like symptoms. I take Phenergan on a regular bases and have never experienced side effects with it. Just thought it might be something to consider if you hadn't thought about it.

By mariel
Posted March 23, 2008 at 11:43 pm

hello i wasn't sure if this acting weird was from those two IV meds, phenergan or reglan. the jerking, twitching really scares my mom and i. can you tell me if this side effect went away? if so how long did it take to get out of your system? he is supposed to be discharged tomorrow. initially he was VERY lethargic and hallucinating. today he is more awake but when he closes his eyes he starts to hallucinate he is eating different foods. im just so scared to take him home. i took him for a walk around the hospital unit. he did pretty well, but i'm scared when i bring him home he will fall.

i dont want him to go to a "home". what's so frustrating i brought him in the hosp, tuesday alert and oreinted, and now i feel i'm taking him home with some slightly confused and very sleepy. i dont know what i'm going to do....

the jerking/twitching/muscle spasms are really scary looking. they look like he is having a seizure. i don't know what i should tell the doc. he last got the phenergan on friday noon and reglan friday midnight. i dont know how long this med is kept in his system.

thanks....chewy do you have GP?

mariel

By JEM
Posted March 24, 2008 at 2:16 am

Mariel -
I think your father's problem is very likely the Reglan. I was in the hospital with non-stop vomiting. The reglan worked to stop the nausea and vomiting due to gastroparesis but I started to get terrible side-effects. I couldn't hold my head up, I couldn't stop moving my legs. One nurse tried to have me sit up after I would have a drink, sometimes in a chair and I ended up crying because I couldn't sit up. I had really bad anxiety too. I felt like I was falling apart. It was an effort to act normal. No one told me about these side effects. Over time they increased the reglan, and my anxiety was so bad I wanted to scream. I just wanted to get out of the hospital. One nurse, realizing I wasn't coping, thought it was from being cooped up and said that it happened to all the patients. Well, when I got home, my husband got the prescription for reglan, and I read about the side effects and I immediately stopped it. I started to feel better in about a day and a half. Later, I looked up the side effects on line. You might want to do that. Some people report that after being on it for a long time, they have severe depression, and I believe some even said that they have suicidal thoughts. The Physicians assistant to my gastro doc said that for some people reglan is a great help and they have no side effects, but for some it is just terrible. She said she would never take it unless she had to. So I would try to get him on something else. I just started domperidone, and have since had the dosage increased. It is working very well - before I could only drink a juice protein drink, but now I can drink the boost drink. I don't think they will give this medicine in the hospital because you need to get it from a special pharmacy and have a gastro doc prescribe it. It is not approved in the US, but gastro docs can give you a prescription for it. I would look into that. It was such a miracle for me. I hope I have helped.

By JEM
Posted March 24, 2008 at 2:23 am

Sorry Mariel - I misread your post. I didn't realize they took your dad off the reglan. If it's only been a short time off it though, it still could be the reglan. I hated being on it. Never again.

By JEM
Posted March 24, 2008 at 2:35 am

Here is a link about reglan - basically what patients who have been on it have to say

http://www.askapatient.com/viewrating.asp?drug=17854&name=REGLAN

By deb1
Posted March 24, 2008 at 8:54 am

I know you said your Dad was taken off the Reglan but those are the same side effects I had w/it. It was horrible. I started tpn in dec 07. I had one line infection already so I know have a double lumen picc line the first was a triple. A home healthcare nurse comes once a week. I have an extension so I can flush the one line after I run the tpn. You can use press n seal (yes, the plastic wrap) to cover the picc site. However, use something over the picc dressing so the press n seal doesn't stick to it. Say cut off the end of old sock and slide it up the arm. There is a company that makes things for picc sites not to get wet. I can't remember the name but if you type in picc line cover/swimming or something. If no luck-I will find it for you. Also, visit the Oley Site-it has alot of info on tpn. I know this is just awful for your family. I know it is for mine. Every day it seems like what will happen now. All this from GB surgery. Like I said though if you have clear evidnece your Dad's bile duct was cut-there are atty's that specialize in that litagation. See if the doctor will write a RX for domperidone and then see if there is a compound pharmacy or you can get the meds from canada. I have a website if you need it. My prayers go out to you and your Dad.

By chewy1
Posted March 24, 2008 at 1:19 pm

Mariel,
As Deb and JEM both said the reglan seems like a very plausible cause for your father's twitching and jerking. I don't remember how long it took after being off of it for the symptoms to go away but doesn't seem like it was too long. The symptoms did go away eventually.
I was jerking and twitching to the point it was driving me crazy, plus rapid blinking and even my tongue would constantly be twitching. I hadn't associated with the medicine until I was in a new GI doctors office. He asked me how long I had been doing it and when I told him he told me to stop the Reglan immediately.
Later when I was at my neurologist, I mentioned the problem I had had with the Reglan. She told me to NEVER take it again even if a GI doctor prescribed it. She said it was one medicine that raised red flags for neurologists when they had a patient who was taking it. She told me that in some people Reglan causes the same symptoms as Parkinsons and that they think that long term use might actually lead to the development of Parkinson in some people.
I think it might be a good idea to ask your dad's doctor about the possibility that Reglan is causing some problems.
I hope that things start improving soon for your dad. He has been through an awful time.
Judy

By JenD
Posted March 28, 2008 at 12:39 pm

So sorry to hear about your Dad. I also developed GP after gallbladder surgery in 2001. The symptoms you describe are side effects of Reglan and pHenergan and can become permanent if you stay on these drugs. I have permanent generalized dystonia from Reglan that has made it nearly impossible for me to walk. I have had tardive dyskinesia/dystonia for 12 years.

Regarding TPN...I have been on home TPN for about 4 months until recently I had to stop it because my insurance company stopped covering it. You should have a home health care nurse coming once a week to change the dressing on your Dad's PICC line and draw blood. You need to be as sterile as possible when hooking up and unhooking the lines. In addition to washing hands well, we also use lots of hand sanitizer and gloves. You need to flush the lines twice a day usually when you hook up and unhook the TPN. Regarding blood sugar, it is good to check at least once during TPN and once while off of it each day at the beginning. If it is stable then you probably don't have to worry about checking it as often. They can check blood sugar with the blood they draw once a week too.

For showering I use a hand held and try to keep my arm outside of the water. We use saran wrap and waterproof pink tape to seal. I also find that the newspaper bags they use for rain work well too. Just cut the other end put rubber bands on either side of the PICC and use the water proof tape also.

I hope this helps.

Good luck. You can e-mail me if you have questions:
jlyndor@yahoo.com
Take care,
Jen

By alphabubo
Posted March 29, 2008 at 8:23 am

Dear Mariel,
I am so sorry that your father is going through such a rough time. I have dealt with TPN for several years with a small break in between times. If your father is up to it and it is okay with the doctor, he should be able to eat orally while receiving TPN. Right now I am using TPN to supplement what I am taking in orally so that I can gain weight because I have had too much trouble trying to do so on my own. My doctor also has me regularly checking my blood sugars. This is important because the TPN formula has so much sugar in it in the form of dextrose. A home health nurse was sent out to first help me learn the basics of handling the TPN and the best ways to keep as sterile as possible while handling it or anything else involved with the PICC line such as medications. Now that I can handle hooking up and unhooking by myself, I still have a home health nurse who comes by twice a week in order to draw TPN labs that keeps a close eye on my electrolytes and blood levels. Usually blood can be drawn from the line for the labs which can mean less needle sticks. My nurse also changes my dressing once a week, but except for this and the blood draws, I handle everything else. I was still able to go out with the TPN due to the use of a portable pump that could be carried in a backpack which I could easily take everywhere with me.

Like your father, I also have GERD and struggle with burping too much, and I also have gastroparesis. I take Nexium for the GERD and Phenergan for nausea. The only side effect I have noticed from the latter is drowsiness while the couple of times I tried Reglan, it made me feel uncomfortably restless and anxious. Reglan can cross the blood-brain barrier which is why it has a greater possibility of causing neurological side effects. I hope that your father's doctors can figure out what is causing his symptoms so that he can start to feel better.

I was at one time on TPN feedings 24/7, but this time I am only on it for twelve hours a day. I need to take a shower, I cover up the site with clear plastic gloves whose fingers have been cut off and which are held on me with rubber bands. I still try to keep the arm out of the direct flow of the shower water as much as possible.

I will be sure to keep you and your father in my prayers. Many, many hugs.

Bobbiejo

By chewy1
Posted March 30, 2008 at 11:47 am

Mariel,
I was just skimming through the posts and saw that you had asked if I had GP. I am not sure how to answer that question anymore...I was diagnosed with GP in 2001 after being sick for about 2 years...after that I was tested several times and the diagnoses confirmed. I have been treated for it with the few medications and treatment available . However, in Dec. 2007 I went back to Mayo (they were some of the ones who diagnosed the GP in 2001), they did several tests including a gastric emptying...and to the surprise of my GI doctor and myself, my stomach has made a complete turn around and now is dumping too fast. The thing is...the symptoms are the same with either condition, the only difference is most people with the rapid dumping tend to suffer from diahreea. I don't...I have more problems with constipation. This led to the discovery that now my intestinal tract does not work correctly and I have a pelvic floor dysfunction....which cause the waste to be trapped in my intestines increasing the pain and nausea!
So... I guess technically at this point I no longer have GP but I have had it and according to the GI doc, I may switch back to the delayed again at some point.
It's just a crazy thing!
Hope your dad is doing better.
Judy

By mariel
Posted March 30, 2008 at 6:42 pm

hello JUDY,
that is really crazy; how you were dx with GP now with something else. so when you were dx with GP did they do CT scans(probably huh?) didn't the contrast go through? it seems that if you had instestinal problems then the contrast would back up to the stomach? my dad has had so many CT scans that all came out neg. the docs were thinking there might be some kind of obstruction that's causing the nausea/vomitting but known seen. so i'm wondering what test did they came to that showed them you had another dx. so are the docs saying you had GP then later develped the instestinal dysfunction?

as for my dad, he as been out for 1 week and so far so good. he is on TPN for 12 hrs. he gets a home health nurse once a wk for drsg change to PICC line and he gets lab draw twice a wk. i think he is doing well with the TPN. i think this is the first time in a long time that he could sleep well. no hiccups no cough no feeling of nausea or vomitting. it took a few days for the hallucinations and twitching/jerking to subside. he does @ times twitch but as bad as when he was in the hosp. my mom has given him some jello and has tolerated well. i'm just hoping we are headed in the right direction. awaiting for his GI appt later this month. i'm trying to get him to see his psychiatrist, coz everytime we get an appt he doesn't get to go. this is because he gets readmitted. he has missed 2 appts, he was last seen back in dec. i think he needs to change or increase his meds. he is on prozac and welbutin.

judy, i hope all is well.... take care

mariel

By mariel
Posted March 30, 2008 at 6:58 pm

hello BOBBIEJO
thanks for replying...just wanted to know if too have GP? my father has been out of the hosp for 1 week and appears to be doing well. i think this is the first time in a long time he has a good night sleep. no hiccups, no coughing, no feelings of nausea/vomitting. he as tried jello and is tol well but we are taking it slow. when i connect my dad to his TPN he stays in bed and doesnt move until i disconnet him in the morning. i guess i dont blam him kind of hard to move around with that heavy backpack.

a home health nurse does come once a wk to change his drsg. and a lab tech comes twice a wk to draw bld. i'm hoping the tech will only come once a wk. the people in the hosp told me that home health and the teck don't draw bld from the PICC line coz of infection.

how are you doing with your "diagnosis"? i wish more research is done for GP and other diseases related with GP. i have noticed that people with GP are fairly young...but with my dad he is 69 ( not really young). i hope GP is reversable, i know he will not be the same as before but i would hope he could be close too. i just want him to be able to tol some foods with nausea/vomitting or being readmitted. he is sick of being readmitted in the hosptial. 12 readmisstion in 6 months plus the 3 months continuous on the initial admission.

i hope all is well.....take care..

mariel

By alphabubo
Posted April 8, 2008 at 3:55 pm

Dear Mariel,
I am sorry that it has taken me so long to respond to you, but I just recently had to deal with a death in the family. I hope that your father is doing much better now.

I have also been diagnosed with gastroparesis ever since 2002. However, one doctor thinks I may have had it much earlier and was misdiagnosed with just GERD. At that time I underwent a nissen fundoplication which had to be taken down in 2002 because I was having difficulty in swallowing due to a build up of scar tissue from that surgery done in 1995. The doctor thought the stomach wrap or nissen was blocking out my symptoms of gastroparesis which became severe months after the wrap was undone. In a rare case, my digestive system gradually failed on me, and I had to undergo a six organ transplant. Currently I still experience some symptoms of gastroparesis, but it is better such that I can eat orally when before the transplant I had become completely dependent on first j-tube feedings and then TPN. Although I hope that your father's condition does not ever come close to requiring a transplant, my case is an example that there can be hope even in severe difficulties. I always try to keep positive, although I do think a good cry once and a while is restorative. Many people do fare much better with treatment and diet modifications. I hope that this too will be the case for your father.

I agree with you that more research should be done about gastroparesis. I also think it is important to increase awareness about this illness to the general public because so many gastroparesis sufferers are hurt by assumptions and misinformation.

I am keeping you and your father in my prayers, and I hope that the stars will shine brighter for you in the dark and that the sun will shine more gently upon you in the day.

Warm regards,
Bobbiejo

By chewy1
Posted April 9, 2008 at 10:20 am

Mariel,
Sorry I didn't answer sooner. I usually check post every day but since the format has changed i seem to miss several.
I think I have had every kind of test possible...at least it seems that way at times. I have had CT's, MRI's, Mannometry, endoscopies and others I can't remember the names of now. But, the main one that determined GP and now the switch to the rapid emptying was the actual gastric emptying scan. Has your dad had one of those done? They are done a little different in different places. I have had some where I am laying down with the scan going continuously for a couple of hours, some where you have a new scan done every 30 minutes for several hours while standing and then ones where you have a new scan every hour for the first 6 hours and then return for one the next day. With all of these scans I have eaten scrambled eggs with radioactive material. The scan that I had at Mayo is the one that is the all day and then returning the next day.
Life with motility problems is really hard for everyone involved, the person, and their family and friends. I'm very fortunate because my family is so supportive. I'm sure your dad feels the same way about you. I have my "poor me" days but when I read about how bad things are for others on this site I realize I need to get a new attitude.
I hope your dad is doing better.
Judy

By mariel
Posted April 10, 2008 at 9:19 am

thank you JUDY,

to everyone who has replied and made me feel "i'm not alone". i do see the light under the tunnel (crossing my fingers). UPDATE: my dad was discharged a day after easter on TPN. so he has been home for about 2 1/2 wks. he has being doing great. he has been tolerated clears and my mom has been giving him some sm amts of solids ( i tell her don't over do it). but i think the GREATEST thing is his depression is better. his pschy doc gave him a new med zyprexa. has anyone taken this med? i don't know if this med is making him feel hungry. my dad looks @ food like he wants to eat it, he has never looked @ food like that before. my does chores without us telling him to do it (like fold laundry clothes). i don't know if it's the zyprexa or what. he says he feels hungry unlike before. well whatever it is i hope it conts to help him get better.

i still hook him up to the TPN every night. he doesnt see his GI doc till the 23rd. but we have another problem: because my dad got so emaciated this wire he had place in his chest is poking out ( wire is from his 98 bypass). i don't know what a wire is doing in his chest, a bunch of nurses have asked me if he has a pacemaker, coz they are curious on why this wire is there. he did see a surgeon, thorax (chest), they will cut the wire on wed 4-16 pls keep him in your prayers. my mom told me they will just put local anesthesia. i was not there when they saw the doc but i'm trying to figure out what kinda question to ask him. i hope this is not a set back for my dad since he is doing so well.

thank to everyone ...pls cont to pray for my family and i will pray for EVERYONE and their family...GOD bless...let us keep the faith and hope

mariel

By LL1
Posted April 10, 2008 at 8:44 pm

I am so sorry to hear about your dad having to go through so much.

I had not been receiving my newsletters and today is the first day I received this new format.

Have you tried asking for a psych. consult at the hospital. They can possibly consult with his pysch person and see what would be best for him. He would be monitored in the hospital as well. Of course, someone should always check while he is in the hospital-behavior changes etc. As many of us know, coping with serious illness is so difficult. He is very lucky to have a caring an attentive family. This, I am sure, keeps him hopeful.

Let me know if the consult is a possibilty.

By mariel
Posted April 15, 2008 at 8:16 am

hello..sorry to have only responded to you now...been busy with my 4 sm kids + household stuff, father and work.

you know what so funny when my dad was in the hospital i asked his medical doc (doc as an inpatient-he has never seen my dad before prior to that addmission) if he could get a psych consult coz he kept missing his psych appt (due to readdmission). his response to me was that inpatient psych consult was only for suicidal patients and not for my dad's condition (depression). my dad was not suicidal. but he told me that when he gets out he could see his psychiatrist.

about a wk after his discharge i made an appt. he finally saw his psych doc and was given another antidepression med, ZYPRECA. so far this med is working well. my dad totally has an appetite but taking it slow. no more nasuea/vomitting like before the only thing he has his bouts with HICCUPS. unlike before when he would start HICCUPING constantly he would eventually have the naseua and vomitting/ reflux/coughing/GI bleed. this was a constant roller coaster. my dad was not gaining wt but losing.

now that his new GI doc changed his med to NEXIUM (old med generic- prilosec) and dissolvable CARAFATE tab and took him off the REGLAN (was not going to eat and be only on TPN only sips of water). but now he is eating real food sm amts. i'm hoping and praying he is on his way to recovery. this has been a long journey for the family and MUST ESPECIALY for HIM. this has gone on for close to 1 year.

how about you do you have GP? how long have you been living with the disease? what meds are you on?

By alphabubo
Posted April 17, 2008 at 7:51 am

Dear Mariel,
I am so happy to hear that your father is doing better. I am glad that the new medications are helping, and I hope that he will continue to improve with each new day. I will continue to keep both you and him in my prayers and thoughts. Best of wishes.

Warm regards,
Bobbiejo

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