I am frightened

[cherpep]

Things were going real well for me, until last week.  My fistula stopped working.  Doc says I did nothing wrong, my vessels were just weak.  Basically, part of the fistula was becoming quite large, while another part remained small, resulting in clots and not good enough blood flow.  I had emergency surgery last week where the doc tried to reconnect the fistula to another vessel, but determined that he couldn't save the fistula after all.  He ended up putting in a graft.  Since I can't use that until it heals, I also had a cathetar put in the opposite shoulder.  yadayadayada, it is a few days later, I am in pain but at home.  I was given medication for the pain, but I was constantly nauseous and sometimes throwing up.  I have had a few successful dialysis treatments using the new cathetar.  I thought the nausea was being caused by the pain medication, so I stopped taking it.  However, I am still sick.  I can only hold bread products down.  I'm weak.  My hemoglobin was down and received a unit of blood a couple of days ago.  The only protein I've been able to not throw-up is some cream cheese on a bagel.  I've tried small portions of turkey, cottage cheese, eggs, and a meatball.  Oh yeah - I did keep the egg down too.  However, everything else makes me sick.  Also, I can't feel the rushing vibration in the graft.  My arm is still quite swollen, it's been about a week since the graft was put in.  Are you supposed to feel the thrill with a graft?  Anyone else get this sick?  I know I need to talk to my doctor, and I will, but I think they'll put me back in the hospital.  Honestly, I can't afford too much more of that, and I was hoping to go back to work on Monday.   I'd like to know if anyone can tell me about the thrill in the graft or the vomiting.  I will talk to my doctor, I was just hoping for a few words here first.

[Deanne]

I'm sorry for everything you're going through. I'm still pre-ESRD, so I don't know enough to have any answers or suggestions. I can offer hugs and support at least. I hope your doctor has an easy solution for you.

[monrein]

Oh no.  I'm so very sorry you're going through this.  It's always tragic when your fistula starts being problematic and all that comes along with it.  Sure hope things resolve for you soon and you can get back on track and out of pain.

[Adam_W]

Sorry you're going through all this. Dialysis is bad enough, then throw in access problems, and it just makes it that much worse. You're in my thoughts and prayers that the graft will work, and your nausea will go away.

Adam

[cherpep]

Thanks guys!  Those words really do help.  It feels even a little better just pouring my heart out to people who understand.  Really understand.  Thanks!

[cherpep]

You think - I've got this beat.  I can live a somewhat normal life.  Things are good.  Then this huge brick wall pops up in the middle of the road. leaving you dented and out of steam, cracked up like a broken egg.  All the kings horses and all the kings men....

[migaguiar]

PLEASE PLEASE if at all possible put work behind you at least for the foreseeable future. Work is not going to make you healthy.
It sounds like you need to catch up on dialysis first of all. Just hang tight and the more dialysis you do you will feel better.

I hung in there until my skin was pale my lips were gray and i was horrible. Just give it your best shot.
And yes you will feel the thrill on a graft.

You can do it try to eat quality not quantity so you dont get as much toxins in you. Sit and just watch TV all day long and conserve your energy.
Thats my advice!

[cherpep]

I hate being weak.  I feel like I must push myself.  I don't know how much to push, though.  And, I really hate sounding like a whiney baby.  So, please if that is how I am coming across, please forgive me.  I have never been this low or frightened before.  I'm not sure how to get past it.  I feel like I have to be an example to my kids - fight, fight, fight.  I don't want them thinking of me as frail and pathetic.  It's tough, though.  Really tough.  I just don't have the strength.  Watching TV does sound pretty good...

[flip]

I'm so sorry, Cherpep. Have you tried drinking Nepro instead of trying to eat? I always take a phenergan if I have nausea. It does work for me.

[xtrememoosetrax]

I'm sorry, Cherpep, and my heart goes out to you. You have a right to feel discouraged.  Why don't you just try to let yourself feel that for a while?  Telling yourself that your feelings are bad or wrong is not really helpful, in my experience.  Let yourself drop down into the discouragement for a while, then you're likely to swing back up in due time.  Just my .  Hang in there, okay?  

[cherpep]

What is Nepro?  Is it some sort of drink?  I think I'll look it up on the internet.

[cherpep]

OK - just checked it out.  These look like a great option for me.  I did the store search, but it doesn't show that they are sold nearby.  I live near Detroit, MI.  Has anyone purchased these in the store before?  I can order some, but I sure would love to go get some today. 

[flip]

All Rite Aid pharmacies carry it as well as a few others. My pharmacy doesn't carry it but he orders it for me and usually has it the next day. I like the Wild Berry flavor best. I drink a can every morning for breakfast.

[rose1999]

.  And, I really hate sounding like a whiney baby.  So, please if that is how I am coming across, please forgive me.  I have never been this low or frightened before. 

You don't sound whiney or like a baby, you sound like someone who is ill and sacred and looking for support and you've come to the right place.  I hope that by putting your thoughts into words you are managing to feel a little better.  Please know that we all support you and you must come here when ever you need us all.  I hope you will soon start to feel better. 

[Lori1851]

Hello,
Hope your day was better today and the pain from the surgery is better. My son takes Nepro. Its kinda like Boost but doesnt have the phosphorous or protein in it. I cant remember  which it is sorry . I make a phone call to Apria Healthcare and they send Dustin a whole month of it. Dustin said it is "thicker" to drink than Boost. Its suppose to help him get more protein the way I understand it. Hope this helps.
Lori/Indiana

[kevno]

It's Ok to Be Frightend cherpep, most of us renal patients have been frigthened, scared at one time or another. It is a very difficult illness to live with is renal failure. But we all have the courage to carry on with life. I was scared, wondering what to do couple of years ago now 10th April 86 the surgeon where lined up to take my leg off. The patients/carers on this site help me through my pain. Sending posts of hope and caring. plus helped me through the decision to say NO to the surgeons. The Doctors/Surgeons will help you through this hard time, plus do never forget this site is always here to listen, plus hopefully give some good advice.

[flip]

Here are the numbers for an 8 oz. can of Nepro:
Protein  19.1 g.
Sodium  250 mg.
Phosphorus  165 mg.
Potassium  250 mg.
Calories  425
Carbs  39.4

Nepro and Ensure are both made by Ross Nutrition

[spacezombie]

I used to be able to chug Nepro's in one swig. Blech. But they did help me feel better when I wasn't able to eat much.

I hope you feel much better soon and your new graft works great for you. You are NOT a baby at all. It is okay to be frightened. Let us know how things go! 

[cherpep]

I just called the RiteAid on my corner - they have Nepro in stock.  Hubby is running there right now to get me some. I really think this is gonna help me.  It's funny how just something small like that can actually perk me up a little bit.  I know it won't cure everything, but if it helps me get some strength back, perhaps I can face the rest and not be so afraid.  I'll be thinking of all of you when I raise the first drink - CHEERS!

[paris]

Cherpep,  you are entitled to feel down and frightened.  You are dealing with many things at once.  Isn't it great to come here and someone can give you a great tip?  Thanks, flip for helping her find Nepro.  We get better information here than from the professionals.  I  hope that helps you and your stomach feels better.  One thing at a time.   We all care and want things to start improving.   You'll be in my thoughts and prayers

[G-Ma]

Feel free to whine...I have had my days too.....yes you feel a thrill with a graft...they chose to put a graft in the very first time last year in April because that's what "they" wanted and I didn't know enough to make a decision, well graft died "clotted off" in November, went into emerg surgery and took out the clots, woke me up, put me on a dialysis machine and promptly clotted up again so back into surgery and got a catheter and now will be getting an access started on May 16, this time my own vein with a specialist and I'm more scared now then I was before so go figure..guess that's just me being a whiny butt.
G-Ma