My leukemia's back.

[sourland]

Rachel, your whole 'team' would advocate for you. It's probably a good thing that we don't live closer.

 

[3goodeggs]

We'd all be arrested.

The headlines would read : "Crazy chicken people invade hospital. Dozens arrested."

 

[N F C]

@3goodeggs , that paints a crazy picture, lol!

 

[COChix]

thank you all for the prayers and good thoughts!

I'm in the hospital, day T-7, getting the pre-transplant chemo. So far so good, although no one told me I'd be gettting a med called Klonopin to help prevent seizures--it's a cousin to Ativan or Valium, so I took a nice nap this morning . Mom got here this afternoon and we've been catching up, it's been nice. No nausea!

Yesterday am they put a triple lumen central line in my chest and that was pretty much a horrible experience. Apparently I'm not great at advocating for myself, but when the person doing the procedure says "how are you doing" and you're literally crying and saying "Not good. It feels like you're trying to pull the skin off my chest"....wouldn't you think that would be a cue to give some more pain meds? It was truely horrible. I'm never, ever having something like this done again without Don or a good, assertive friend there to advocate for me, even if friends or family aren't allowed in the procedure room. Not having an advocate will literally be a deal breaker for me. They also put the stupid thing right against my shoulder, where my bra needs to fit. Now, some women wouldn't think a thing about this, but with my build and level of modesty, the bra is a necessity. Oh, and the three ports on the thing, that should point straight up or straight down...no, they go striaght to the side, into my freaking armpit. Ick! and uncomfortable. It was so bad I pretty much took all the drugs they had available last night to quit replaying the procedure in my mind over and over...and trying to keep it covered during the shower was a complete joke. The manager of the unit was supposed to come talk to me about it today but I never saw anyone.....anyway, I'm sure trying to get over it, but it was kinda a trauma thing. I'd swore I wasn't going to complain or fuss about anything here, but here I am

Wow, just found this thread and wanted to jump in and tell you I am sending good healing vibes your way. . Stay strong and after being through two neck fusions I realized that you really have to be your own advocate when involved in the medical system. Good luck and we are here for support!

Here are a couple quotes that resonated with me..thought I would share.

 

[Blooie]

Hope this gives you a smile, today, Rachel, in keeping with the conversation about patient advocacy.

I was hospitalized in Billings, Montana, after I contracted gangrene in my left hand. On May 30th I was fine - just a little hole in the top of my hand - and on May 31 I was in St. Vincent's signing permission for amputation. Scary time, let me tell you! I spent the next 10 days up there getting IV antibiotics - 3 different ones, one after the other, day in and day out for the entire time. Every night after 6:00 I was NPO - nothing by mouth - because they didn't know from day to day if I would be heading back to surgery for either another debridement or amputation. That decision had to wait until the surgeon made rounds.

Now, at St. V's they did meals a little differently. You picked up the phone whenever you wanted, and dialed the kitchen. You told them what you wanted and if their computer showed no dietary restrictions, you got it. Want Raisin Bran and a roast beef sandwich at 6 am? You got it. Burger and fries at 11:00 pm? Yep. And soon after you ordered a person decked out in a vest and tie would knock on your door, announce "Room Service" and bring in your order. Problem with that was that from the time I woke up until the time the doctor finally made his rounds, I was smelling all that food going by my room, and he usually didn't make rounds until around 11:00 am. I was starving, having not eaten since 6 the night before and then spending all that time smelling food being brought by for others. I complained, but it didn't help. Until he came in, unwrapped my hand, checked it, and re-dressed it, nothing could be brought to me.

One day I'd had enough. One of the volunteers came by with a gift cart and I spotted a little white bear, dressed in scrubs,a surgical hat and a surgical mask. I bought it. Then I took some of the bandage roll out of the supply drawer in my room and carefully constructed a hangman's noose. I put it around the teddy bear's neck and hung it from the door hinge in my room - effectively hanging my doctor in effigy. I wrote the doctor's name on the front in blue ink.....boldly! Staff was just rolling. When the doctor came in he was stunned. He is famous as a superb surgeon, but he doesn't have the quickest sense of humor.

So we had a nice "conversation", the result of which was that he came in to check on me as soon as he arrived at the hospital - around a respectable 8 am or so, sometimes even earlier. And all of my nurses, his nurse, and Dr. Sukin himself autographed my bear's little back when I was discharged - with my hand intact! I didn't get my bandages off until the first week in October, and had two more debridement operations on that hand during the summer, but he saved it.

The kicker was that he wasn't even a hand surgeon. His specialty is large joint replacement. But he happened to be on call the night I came in, and it took him no time at all to take total charge. He assembled a crack team with a plastic surgeon and an infectious disease specialist and they worked very well together. My hand became his obsession in a strange sort of way....it was something out of his area of expertise and he did what several other doctors on staff thought couldn't be done. I have absolutely NO complaints about his treatments or my care - except for starving to death! When it came time for a hip replacement, he was my surgeon of choice. Because he already knew about my previous history, he took extra precautions, which I appreciated deeply. Even with all the extra care, I still got serious cellulitis in my hip, which meant that when most 70 year olds were leaving the hospital 4-5 days after surgery, I, at only 52, was still there a week later, IV antibiotics again, and then I had to have 2 other operations on it. Because of the gangrene, I don't heal well, so the IT band that holds everything together didn't heal. The internal dissolvable sutures dissolved before the tissue had healed. The third operation repaired the band with permanent sutures. He said my next option was barbed wire. The IT band ruptured a 4th time. We just left it as it is. None of this was his fault, but I loved teasing him about it.

He got me back. One particularly bad, painful day, I was laying in my head dozing off when I felt someone looking at me. I opened my eyes and he was standing in the doorway. He grinned at me. "If you had brown eyes you'd look like a cocker spaniel."


Someday I'll tell you what I did to the poor flight nurse they called in to try and place my umpteenth IV!

 

[jgoldy2]

What are the chances you have chemo on your birthday, let alone hopefully your last chemo, my aunt gets to

 

[lazy gardener]

Rachel, I'm so sorry your central line placement was such a horrifying experience. You do need an advocate there for you. Preferably someone who's been through it before, or at least knows the medical system so they know what it would be reasonable to ask for. I wish I could be there in person for you. While I don't have a lot of medical back ground, I've been in and out of the hospital environment for years, and can be like a bull dog with a bone when it comes to advocating for patient rights. Keep your eye on the goal. I'm praying for you.

 

[seminolewind]

You would think they would put you out like they do for a wisdom tooth being pulled. Maybe they can put an extension on it if it's not detrimental to keeping that thing sterile.

You need to find yourself a medical person who can be your advocate.

Hope you're doing better now.

 

[bluesub]

Hang in there Rachel! Keep fighting!

 

[donrae]

Hope this gives you a smile, today, Rachel, in keeping with the conversation about patient advocacy.



One day I'd had enough. One of the volunteers came by with a gift cart and I spotted a little white bear, dressed in scrubs,a surgical hat and a surgical mask. I bought it. Then I took some of the bandage roll out of the supply drawer in my room and carefully constructed a hangman's noose. I put it around the teddy bear's neck and hung it from the door hinge in my room - effectively hanging my doctor in effigy. I wrote the doctor's name on the front in blue ink.....boldly! Staff was just rolling. When the doctor came in he was stunned. He is famous as a superb surgeon, but he doesn't have the quickest sense of humor.


Someday I'll tell you what I did to the poor flight nurse they called in to try and place my umpteenth IV!

Okay, Blooie, I'm now mentally calling you Katniss---that's hilarious! And a great way to get your point across. Sometimes they just need a lesson in consideration. I'm glad you recovered--that's some scary stuff when infection moves that fast!

I've just been miserable with this central line. I was so stoned on meds yesterday I could hardly talk to my kiddos, that's just not cool. But, apparently I'm pretty much stuck with it. Since they've put one in my chest, they don't want to use this same area again. The other option is a PICC line in each arm. Gee, if I'd known that was an option, I would have kept my perfectly good PICC line they pulled out Tuesday. However, it also means having lines running to each arm and that sounds all sorts of claustrophobic. The PICC team is going to come eval me today to see if I have a vein that could support a triple lumen PICC, that's my only option at this point. So, I'm praying a lot for God to help me make peace with this stupid central line. I've got to get mentally unstuck from this and move on, I've got so much bigger things coming up that I'll have to focus on. This is done, and while yes, it sucks, it's done and I kinda need to get over it, since there's really no other options.


This time last year my biggest worry was my bad hatch rates with my new rooster. How things change, huh?