Continued from TPN/PICC Line Post #1…
Finally I was discharged and met at home by the home nursing company, Home Solutions. The nurse was extremely helpful and patient. She showed me how to work the pump and how to hook up and disconnect, sanitary procedures, heparin and saline flushes. The bag and pump came with a backpack so I could carry them around with me, since I was still on a 24 hour cycle. The pump had a steady low noise but didn’t really interfere with anything, I was able to sleep with it just fine. At this point I am used to having a line attached in some way so I’ve gotten pretty good at working with it, but it does wear on you. I have to say that having the backpack was much easier than using a pole. I just put the backpack on my nightstand when I slept.
It takes forever to maintain the line and go through the whole process. Here’s a breakdown of the steps I had to take.
- Two hours before hooking up (bedtime for me once I got on a 12 hour cycle) – take the TPN bag out of the fridge so it will warm up. Cold TPN solution can cool your core temperature to dangerous levels.
- Once I wanted to hook up I had to get all of my supplies out and lie them on the table. Syringes, heparin, saline, supplements, alcohol wipes, batteries, paper towels, a bag for trash.
- First step- use alcohol wipes to clean off the ports of the TPN bag. My nurse told me to use the “Happy Birthday Rule” – sing Happy Birthday twice while rubbing the surface with alcohol. Attach needle to vitamin supplement and inject the bag of weirdly white solution with the yellow vitamins. Massage the bag to mix (don’t shake).
- Sterilize both ports of the PICC in the same manner.
- Prime the saline and heparin syringes by slowly pushing the air out until a few drops of solutions emerge. Air in the PICC = really, really bad.
- Flush both ports. The TPN line gets just saline. The blood line gets saline, then heparin.
- Spike the TPN bag with the sharp end of the IV line. This is actually harder than it sounds and I usually needed help.
- Replace the battery in the pump. Strange as it may sound the pump isn’t rechargeable. It looks like it was made in the 90s and runs on 9 volt batteries. You open the battery hatch with a coin. They gave me a new 9 volt battery for every infusion and I was supposed to just throw the old batteries away, even though they weren’t used up. I ended up keeping them and now have enough 9 volt batteries for the rest of my life.
- Turn on the pump and load the line. Set up the backpack – the bag needs to velcroed in and the line gets run through a bunch of loops, through the pump, and out of a special hole in the backpack.
- Prime the pump. It doesn’t have an auto prime function and requires you to hold down the button for a few minutes while it primes. You prime it until the solution drips out the end, then sterilize the end, and finally you can hook it up to the PICC. It takes a while to get all the air bubbles out of the IV line.
So as you can see, it’s a really involved process. Everything has to be sterilized and primed so no air gets into the system. Infection is a big risk as the line ends in your heart. Air embolisms can occur if air bubbles get into the system. Since you didn’t have enough to worry about already….
2/10/14 – I had my first blood work done by my visiting nurse. It came back normal but a little dehydrated. She changed the dressing as well, which stung a lot. My poor skin is really sensitive and gets big red welts whenever tape is used on it. It itches abominably and when the tape was removed it literally tore my skin off. The paper tape is better but doesn’t stick as well. The nurse came up with a mesh sleeve that I wore around my upper arm to keep everything in place, and then I used paper tape to tape the line to my arm. Did I mention how many times they warned me about infection and the risk of the line pulling out of my heart?
I had been feeling really sick since I started the TPN and taking a lot less by mouth (sometimes no Boost at all). I was exhausted, drained, could barely get out of bed, body aches. After talking to several doctors, nurses and Home Solutions reps I found out that I wasn’t getting any vitamins or trace elements (like copper, zinc, selenium) at all through the TPN – they were not providing them. Apparently there was a national shortage of various IV components that caused hospitals to only give multivitamins etc to people who have trouble taking things by mouth – and for some reason I wasn’t on that list. I know it sounds like I’m making this up, but I swear I’m not. I was shocked to find out that I wasn’t on that list, or that they didn’t even ask about my intake, but that pretty much fit with the rest of my experience. They added a multivitamin and trace elements to my daily infusion and I started feeling better pretty quickly. At least better than feeling like I was dying. Just one more reason why you have to be informed and on top of your own medical care.
After begging all week, I finally convinced the TPN nurse in charge of my care to switch me to an 18 hour cycle, which meant I received a new preprogrammed pump and a different formula with more dextrose and more volume, designed for the shorter time span. I checked in with the nurse the next day to tell her all had gone well and was reduced to a 12 hour cycle (another new preprogrammed pump, same solution). Having a break from the infusion made a huge difference. I felt much more human not having to be on a leash, and it made moving around so much easier. I was able to get out and drive myself to a doctor’s appointment and a few errands on Friday and actually go to the movies on Saturday!
However, while on TPN, I felt more sick than I ever had before. I had bad diarrhea every day. I was so extremely thirsty that I made myself sick by drinking too much water; my thirst woke me up at night and raged until early afternoon every day, seeming to taper off after I disconnected from TPN in the morning. I felt weak, had nightmares and trouble sleeping, and all of my GP symptoms increased. Mentally I was exhausted and frustrated. I can’t really explain how sick I felt on the TPN. I was so abjectly miserable I felt like I was existing but not living. It took me hours a day to maintain the PICC line and just to take a shower took twice as long since I had to encase my arm in a rubber sleeve and I couldn’t get all the way under the water, having to leave my arm out. Since taking a hot shower is one of my coping mechanisms, this was a big deal for me – it was ruined. I stuck it out with the hope that I would soon be able to have life saving surgery and never have to do it again.
2/17/14 – The visiting nurse came today to change my dressing and do blood work. I had had nightmares all night and the ripping pain that signals the coming of my period – oh joy. I actually slept through her knocking the first time but was able to call her before she left the area. The PICC line and insertion area looked fine when she changed the dressing but she wasn’t able to draw any blood from either port. She had to use a needle to draw blood from my opposite arm and was unsuccessful the first time, so needless to say, between that and the soreness from the dressing change on the PICC arm (and my impending period) I was in a lot of pain by the time we were done.
I gained about three pounds and my labs started looking better. For some reason this was enough to have surgery. I still don’t really understand why this changed their minds, but my surgery was scheduled for February 25th.
Summary – They put in the tube but they couldn’t advance it into my jejunum (beginning of the small intestine, bypassing my stomach). I stayed in the hospital for about a week while they tried to fix it but eventually they discharged me (after much begging) with promises to try to fix it after I had healed. So I was sent home still on TPN with a useless tube, except even sicker.
3/10/14 Monday – Stopped TPN. I had finally had enough. I couldn’t use my new feeding tube for anything except draining my stomach, but I felt so horrible. So, against medical advice, I stopped the infusions, but still had to maintain the PICC line by flushing etc. I got my doctors to sort of agree with me by saying I would leave the PICC in in case of emergencies, but I went back to trying to drink Boost to survive. Sometimes it would work but if I felt sick I would just drain my stomach. After stopping the TPN infusions I started to feel better almost immediately, or at least the new symptoms brought on by the TPN infusion disappeared. Despite what the doctors said (“That doesn’t make any sense, TPN wouldn’t cause that, etc etc”) I know my body and I was correct that it was causing problems, even if I couldn’t explain why in medical terms.
My tube was finally fixed and works fine now, although I do have trouble with it sometimes. You can read about the process it took to get it to work in my post on my gastrojejunostomy surgery.
I’m doing pretty well these days, but I have darker days when I’m feeling really sick. I don’t usually think about being on TPN except on those days, and then I’m terrified that something will go wrong and then I’ll end up on it again. I worry about situations that will require my doctors to try to force me to accept another NJ tube or TPN. The experiences were so horrible that I had panic attacks thinking about it for a while, and nightmares. This sounds melodramatic, but I would rather die than do either of those things again. Recently during a medical crisis I became really upset worrying about these possibilities and my fiancé told me I would never ever have to have either one again. We’ll work through it, he said. Nobody can make you.
It sounds simple but just knowing that I don’t ever have to be in that situation again helps so much. Whenever I start to panic thinking about it now I tell myself “it will never happen again, nobody can make me,” and I feel better. Surviving, existing, isn’t the same as living, and there are some things that are not worth it.