Still in the hosptial!

• By Alisha
• Posted June 7, 2008 at 2:25 pm

Hi tina I just wanted to say hang in there I can totaly relate to what you are talking about. Last november I had to have like three IVs in my arm at the same time until they were able to put a pick line in beacuse I was so low on potassium that the veins kept collapsing on me. I can relate to the pain you are feeling beacuse of the pick line but believe it or not it will get better. Are they thiking of putting a hickman or port in? The sight will be sore when they put a hickman at first but once your body recognizes and copes with it it will get better. I can also know the feelig of your stomach not empting and leaving you feeling like you need to vomit ,hopefully they fnd something that will work for you. I know that I had to have a g tube put in to relieve the gastric content, without it dont know what I would do. Well I hope this helped you knowing that someone else understands what you are experiencing. I know the feeling of not being able to get out of the hospital but believe it or not if you keep your spirits up it will get better. Well take care and keep us posted

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• By JenD
• Posted June 8, 2008 at 3:26 pm

I've been there too. Hang in there. Your PICC will heal and you won't even notice it eventually. I've had mine in for over 6 months now. TPN is my lifeline and keeps me going.

Yes, the emptying tests always make me sick too. Like Alisha I'm lucky to have the g-tube to empty it out. On the TPN you will gain weight. If they give you enough calories you will actually gain quite a bit. I've gained 10 pounds since the last time I was off of TPN.

Hang in there. You will be home before you know it. TPN is doable and when you have TPN you won't have to worry about being so sick. I have felt better in the last 6 months than I had in the previous 6 years.

Good luck. Let us know how it's going.
Take care,
Jen

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• By Whisperingdays
• Posted June 8, 2008 at 4:40 pm

Hi Alisha and Jen,

They have not talked to me about the hickman but he has been talking to me about a Power Port. The iV specialist said that it is so much better then the port a cath..

I was pretty sick last night and in alot of pain. I pray it isnt the TPN that is causing it to be worse. I get up alot during the night to pee as that is one of the things that happens on it as you both know. So rest is sparse. I have already had friends that came to visit accidently squeeze my right arm to say goodbye and give me a hug which has lead me into tears as the pain was bad cause if is still soo sore. So I am going to have to be really careful in the future with people reaching for my arm.

Have many of you gone back for another stomach emptying test only too find that you are alot worse. That is so depressing. My regular doctor will be back tomorrow as the on call doctor was on shift this weekend and wouldnt really tell me much other then it was worse. It was so disheartening.

Today they have me off the TPN for 8 hours a day for the first time other then 24 hours. Too see how I do. I did try and eat but didn't do well. I feel like I am just wasting so m.uch of the hospital food. But I'm paying for it anyways. Now I will have the TPN for at least 2 months and then we will see he said.
my sugar so my fingers have had enough of that.

My strength of being positive is at a all time low right now. I just sill can't believe that this is all happening.
I just think I need some hugs!

WHISPPER

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• By Kate1
• Posted June 8, 2008 at 5:47 pm

Hi, Whispper. Just wanted to write to say that I am thinking of you and I am sorry for all that you are dealing with right now. I'm glad that you are able to have your computer with you so that you can stay in touch with everyone on this site.

I hope you get home soon and that you are starting to get your strength back.

Kate

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• By chewy1
• Posted June 8, 2008 at 6:33 pm

Tina,
I hate to hear that things haven't gone as well as you hoped. Hopefully, when your regular doctor is back tomorrow you will find out more. Sometimes that is the worst part, only having enough information to cause you to worry more.
Reading some of the posts from people who have experience with the PICC lines and such, it does sound like the soreness does get better.
I'm hoping that when you get home and are able to be in your own environment things will start getting better too.
I read your question about when people have had more than one gastric emptying scan did they have results showing things are getting worse. I have had about 6 of them. The first one showed extreme delayed emptying..the second one showed mild delayed emptying, the third showed extreme again. Then I had one done in Kansas City which was done differently and it showed only an insignificant delay. Then I had one done at Mayo which showed extreme again and the last one I had in Dec.---showed no delay... instead I was dumping too fast!
I asked the doctor if that was normal for it to change. He said that they are seeing more cases where people switch from one extreme to the other. He wasn't sure if it was improvements in the test and equipment or if something is actually changing in the patients.
I had been told early on that you could also have the test done within days of each other and get totally different results. So, I don't know what to think.
For me, I dont' think the GP has gotten much worse over the years but instead my body is developing new problems which most are connected to the motility issues.
I will be thinking of you and praying that things improve quickly. Keep us posted.
Judy

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• By angela92
• Posted June 8, 2008 at 6:51 pm

Hey there!
I am sorry that you are having such a hard time with this. I am praying for you to get out of that hospital very soon. Good luck to you. Keep us up on what is going on with you. Oh and HHHHUUUUUUGGGGGSSS to you too!

Angela

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• By Whisperingdays
• Posted June 8, 2008 at 10:44 pm

Thank you all for your support! I love how they tell you to get alot of rest while you are in the hospital ,and every few hours they are waking you up to stick your finger to check your sugar or take your blood and of course your temp and blood pressure. My poor fingers have been poked to death from them checking my sugar on the TPN.

They have been waking me up every morning at 5:30 am to weigh me(who does that) geesh!

Even though I have gained in fluid weight the doctor says that the most I can gain in real weight is a half a pound a day. I want to apoligize for the first post on this topic as my wording was terrible they have been keeping me drugged up on so many different things that even I didn't uderstand some of what I wrote!

They sent in a nutritionalist today to talk to me about my diet. What a waste of time that was. I knew more then she did as everything she suggested was full of fiber and fat. I am just so amazed at how many people in this hospital know very little about our Gastroparesis and I am constantly being asked questions from the nurses in here about it. Pretty scary don't you think.

One of the nurses came in 4 times today and asked me if I ordered my lunch and I said to her, why? I can't eat it anyways so she got aggreviated with me and order me food she thought I might eat.

She brought me a hamburger, broccoli, beans and a brownie. Need I say more about that.....

I just wanted to scream as I felt more then ever that here I am in a place that the medical staff should be up to date with any and every disorder or disease out there and they are not. I constantly have to ring for them to give me my medications as I never get them on time.

I even had one nurse go to take the bandaging off my PICC line and I yelled at her to stop touching me and to wash her hands and put gloves on and to please put a mask on as the IV specialist said to make sure noone tries to clean or touch it without gloves and mask.

I also learned that I am not going to be able to do my job as a massage therapist while I have the PICC line in cause you are not allowed to do long stroking repetitive motions which is what you do when you massage and also no pressure or baring down on that arm either.

So I am in fear that I am going to have to give up my lively hood and I am so upset about that. I feel like the longer I am in here the more bad news I am getting and I am just so depressed. I am trying hard to reach within to keep my spirit calm. Does anyone have the Power Cath in them and if so how is it working for them?

Whispper

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• By Char
• Posted June 9, 2008 at 10:36 am

Whispper,
I hate that you are having such a hard time. Having a PICC put in isn't a very comfertable thing, but the soreness will improve. Once the soreness improves it is improtant to keep using your arm some (don't put a lot of pressure on it), but using it will help you keep from getting blood clots.
I hope your days improve and you can get more rest. You're right you can't get much rest in the hosptial. What gets me is when they think they have to buff the floors in the hall at 1:00a.m.
Hopefully they can get you out soon.
Hugs and prayers,
Charity

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• By SeussRN1
• Posted June 14, 2008 at 4:46 pm

Tina,

Things will get better and improve. You will get use to the PICC line and the TPN routine. You are always going to run into medical staff that don't get it - so just grin and bear it.

I have had 2 PICC lines and a Power PICC. The power PICC is nice because they can use it for CT dye and it great for blood draws.

I just got my denial letter ffrom the ins. company regarding the pace maker so now it is off to appeal land.

Sometimes - I think that my nursing knowledge just makes this hole thing worse that not knowing anything. I still cant believe that ins. co would rather pay 5-6000 a week for TPN than agreeing for the pacer - not cost effective.

Well I hope things get better for! I am sure your regular doc will fill in the blanks for you. I hate having the partners cover - especially when I am under the care of my Family doc - I have to explain everything.

Get Well Soon!
Beth

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