Greenbaum wants me on a PICC line stat--what other options might I have?

Hi, all.  Thank you so much for your responses.

I'm not in the hospital yet.  My PCP's stupid office confused my message, so it got into an insurance issue (these people are true dimwits)...anyway, he was calling Greenbaum and getting back to me today or tomorrow.

Sometime tomorrow (I hope) I'm going to my local hospital, getting the line in (Dr. Greenbaum likes the one in the neck vs. the arm), I think I have to stay in hospital a day at least, and then I'll have a nurse come out once per week to dress/clean and draw blood and whatnot.  He says it should be in for about six weeks.

I hate needles and medical treatment.  I like being alive better, so yup, I'll suck it up.

You guys rock!  I'll let you know when I'm on my way to the hospital.  

Swing critters, pray, send positive vibes!

***huggles**** Listen, the neck line (which I think is a central line? Dunno if there's a difference so don't use my word as Gospel) is the most marvelous invention in the world. It's a nice wide needle, held in place by like two sutures and a bit of tape, which sounds horrific but I promise you is the kindest gentlest thing on earth. It will go in after they very nicely numb the area probably without any other sticks. They have fabulous spray and spreading topical anesthestics that even smell tolerable sometimes. You'll get one big poke, followed by a push of topical anesthetic which might sting a bit, followed by blessed numbness. You will NOT feel the couple of sutures or anything beyond that. Truly it's a great invention. The only discomfort you might feel is when you begin to feel the Tegaderm (clear adhesive bandage) dressing tugging on your neck.

Best solution for that is to get a supply of Tegaderm pieces and plaster them in a way that feels good for you. If your insurance won't cover that, send me a PM cuz I have a goodly supply of the stuff and will be happy to stick some in the mail to you.

I mentioned the niceness of a nice wide needle because it will enable you to push LOTS of nutrition into a basically very wide port, so it won't hurt or bother. You will probably feel a significant difference in just a few days. Truly, there is no sensation difference between an insulin pen needle and the rough equivalent (needlewise) of a garden hose. It's all a mind game. What you will get in your neck is a lovely flexible tube thingy that you won't even remotely equate with a needle. You will laugh at your fears, I promise.

Listen, you have barfed and **** your way along the path enough. It's time to prop yourself up with proper nutrition. It will totally alter your thinking and how you feel. You're going to be okay. You've fought hard and now it's time to accept this. You're going to be okay.

I dunno what "central PA" means for you, but I can get to Harrisburg in about three hours and would be happy to make a road trip to visit and hug you in person. PM me your actual location and we can make it work. I think you need big hugs and a loving kick in the butt hon :-). (We'll schedule those around the next blizzard.)

Nichole, at this point you are way malnurished. My levels were lower than yours, and fortunately for me I was not suffering symptoms yet.  I ended up with a catheter (a groshung) and was on TPN for a long time, but not entirely for malnurishment. 

At this point you need nurishment and TPN is the only way. A picc line is easy and painless. The only thing that hurts is the numbing and that only pinches a little.  It's going to take about 4 weeks for you to see an improvement in your albumin figures.  My guess is you will be on TPN for 4 or more weeks.

Be thankful that Dr. Greenbaum is lighting up your phone and your email. He is a caring doctor and does worry about his patients. I have been in contact with him for the last 18 months and when I miss an update he writes or calls me. That to me means so much.

Maddie

Elizabeth, you're the best!!!

Putting on my big girl panties and buckin' up!  

Dr. G left a stitch in my neck from surgery that I never bothered to get out--maybe they can just reuse that one?   Ew! 

HA you're gonna have the PERFECT vampire marks!!!! Listen kiddo, feel enough better to take me someplace where they have craploads of meat of any kind and I promise I will motivate and hug and love on you and kick your ass that it will last for MONTHS. LOVE Amish meat suppliers! We'll schedule a meetup and I'll bring every cooler I own and then some..... And I promjise you will laugh yourself sick and me and my love of MEAT. Plus you'll get educated about beef from conception to steak :-p.

Hey there, Maddie!  Thank you so much for your feedback.  You've been through the ringer.  Your words are wisdom. 

Dr. Greenbaum says six weeks.  Let's hope for four!

I'm getting visions of a normal, healthy life:  being able to travel and not puke my guts out the whole trip, loving my DS, maybe even sleeping on a normal schedule.  

Is he making you go NPO? Are you throwing up? Do you have a stricture?

 
Maddie,

He didn't say about NPO when I spoke with him.  I'm hoping to speak with my PCP and confirm today.

I threw up this morning.  It seems to still be happening about 3x/week, usually when I get too hungry but not always.

I'm not sure if I have a stricture.  I've had 3 upper GI's and they were all clear except for showing my brand new acid reflux.  We were planning to get my surgery photos sent to me this week so I can get an endoscopy, now this stuff came up.  He still wants me to do it.  I'm hoping I can get it done while I'm in the hospital if I have to stay there overnight.

I was NPO for the first 3 months after my surgery. When I was allowed to move forward and finally got to food I threw up everything I ate that wasn't the consistancy of pudding. Is this something you are experiencing?  Are you throwing up when you have solid foods as opposed to things like yogurt and such?  I was moved back and forth from solids to liquids until April when my gastric leak had a blow out.  I suspected that I had a stricture or more because whenever I ate food would feel like it would back up into my throat.  It turned out as you know that I did have strictures.  Apparently some were so tight and had such poor blood flow around my pyloric valve that they could not be stretched. This was likely why I was throwing up because food simply had no outlet and the body was rejecting it. I did not throw up when I ate yogurt or protein drinks. Probably because by then I had an (unknown) internal fistula that went from my stomach to my large bowel and likely liquids were just pouring down the fistula tract to my large colon. 

Anyway. I'm not a doctor, but it sounds like you might have a stricture somewhere.

Keep us posted. I hope you feel better soon.

Maddie

 Hi, Maddie.  I don't throw up food--I just spew clear liquid.  I believe that it's stomach acid.  It doesn't depend on what I eat.  I'm actually more likely to toss if I don't eat anything, or if I eat lighter foods.   The theory Dr. G has is that my stomach has too much acid on it if I don't eat something, so it sends the acid up.  The problem is that it happens even when I DO eat, and when I have eaten plenty.  Even if I've just eaten a whole meal and I vomit, it's just the clear liquid.  It's just stupid weird.  I'm hoping that I'll be able to go in today and get this PICC in, and that if I have to stay overnight in the hospital they will just do my endoscopy then.  Maybe I'll have a better clue.