So it’s been a ruthless week and a bit. Felt as defeated as ever. It started last Friday when I noticed that my feeding tube was falling out. The balloon that is filled with water that anchors the tube had burst. This happens and is not alarming. Falling out of my body is alarming when you aren’t expecting it. I called my nutrition clinic and left a message to get it in ASAP to get it replaced. Got a call Monday to go in for Tuesday. I let them know my urgency with my surgery coming up and asked them to order the new feeding tube so we can get it in, before I go under. To avoid having the garden hose for the foreseeable future. It is not fun to have. The garden hose is a long disgusting, transparent(as I can see my stomach contents-barf), shrivelled up, penis. BLECH! It is usually a painless process…usually.
This particular day many things went wrong. The nurse I had was, well, inexperienced. Very inexperienced. That made me nervous. While I had the old tube out we were going to measure me for the new semi permanent skin level device that I have been waiting for. I was using a temporary feeding tube before getting the semi permanent because I thought I would gain a bunch of weight from Tri and I didn’t want to have to change it out in the future. Semi-permanent means just that. The Mini1 is much like my old bard in that it is anchored by a stretchable bulb. It is painful getting put in and painful getting it pulled out BUT it can stay in for up to three years. I do not have to ever worry that it will fall out. So as she was measuring she was trying to push down the measuring disc and figure out what size I need. As she did that it completely came out as the balloon holding it in was defective. Ugh. So off she goes to get a new measurer. She gets the new one, inflates the balloon to be sure it will inflate and we do the whole process over again. After some adjusting we settle on a size. Great. It is quite unnerving witnessing this take place as I am looking at a hole in my stomach. On to putting in the new garden hose. So she gets my stoma (aka hole in stomach) lubed up and grabs the tube and starts to put it in. It is an excruciating, absolutely blood curdling, breathtaking level of pain. She tries a couple more times and calls it. She is not confident for it to go in. I question why the hell it hurt so bad and she didn’t really know. She wanted to get a more experienced nurse to do it. So enter the other nurse and she gowns up, lubes up and literally jams, shoves, pushes this tube into my gut like pushing a fork into a raw potato. Almost impossible but eventually it pops in. I was doubly over in pain and it wasn’t easing up like it should.
I asked her whether these new tubes that they have started using since my last one, may be different and not measure up properly. They said there shouldn’t really be a difference. It was also extremely stiff. I left crunched over, walking to my car to go home. For the next few hours the pain worsens and I am trying to figure out what is going on. I use heat, lidocaine, Japanese mint oil, painkillers and changing positions. Nothing works. So I try to go to bed, again the tube is excruciatingly painful and because it is so stiff I can’t sleep in my normal positions. It was a rough night.
Next morning I have to go to my CF clinic and find my lung function down, blood pressure up, no good advice on how to improve my dry mouth, little options in figuring out my wild sugars and it took over 2.5 hours. It was one of the worst clinics I have ever had. I leave defeated and still in pain.
Spent the day trying to mitigate the pain. Needed to feed overnight and realize the connector for the new tube isn’t compatible with my pump. I have to rejig it and use tape to be sure it doesn’t dislodge while I am sleeping, All night I toss and turn and deal with the pain as best as I could. By this point I am just knackered. It was also cold outside so I get no exercise and just veg out, paralyzed by the pain.
The next day I get a call from nutrition clinic and the new button is in and if I could get in to see them NEXT Wednesday to replace it. I said that the pain is too much with this particular tube and could they fit me in on an emergency basis for the next day. They agree and I endure another day and night in pain. By Friday morning I am literally nauseous with the pain and fed up. I get in on time and I thank them for getting me in and give them a nice big bag of Jelly belly’s as a thank you. The nurse that jammed it in was the one replacing it. I tell her about how bad the pain has been and that maybe these new hoses are not measured properly. She is a bit dumbfounded and doesn’t think it should be noticeable. The size of the tract going into the stomach is 18 French. This is the diameter. As she looks at the tube ready to pull it out she’s says “you are right, this tube is the wrong size, its a 20 French” I just sat there gobsmacked and about to go apoplectic. She was mortified. She doesn’t know what happened and why it wasn’t checked before insertion. She’s close to tears. I calm down and say “ok, well let’s get this damn tube out ASAP”. She agrees and yanks it out, with a scream I am relieved and livid at the same time. She continues to try to figure out what went wrong and I ask her if putting in this bigger tube was going to jeopardize the size of my tract and if the new button will be too small and thus will leak all over? Thankfully by only being in for 4 days there was no risk of that. I am assured that the new tube will be fine. The pain subsides and my body retreats from its constant state of fight or flight. I am disappointed that I wasn’t listened to but happy to just get the hell out of there.
Once I got home I crashed. I slept for 4 hours and got up to eat and then went down for another 2 hours. It was a vindicating day. I’m not sure if there will be fallout from this on their side but I did let my doctor know what happened. I’m no longer mad and am concentrating on staying strong for surgery in 6 days. I finally have a tube that fits properly and will not fallout for at least a month and by then I will have the new one. I am looking forward to that day so I can resume my normal programming.
I feel like a lot of things hit me at once, covid protections lifted in my city, Russia invades Ukraine, clinic was shitty, pain was non-stop, couldn’t exercise and a whole lot of bad with not much good. I am grateful that I am not fighting for my life in Ukraine, so putting it in perspective i realize it wasn’t a big deal. Time to human up and move on.
CF is a constant battle even with the new miracle drug. It isn’t as effective for me as it was in the beginning but it is still a miracle. I have to regroup and get back on my training program and push myself.
Surgery has been weighing heavy on me. I try not let it paralyze me mentally. I am hoping for a safe and quick operation and that my lungs are not affected by the intubation. The recovery is long and delicate. My surgeon does think that I will be able to breathe better so I guess that’s the upside. On a positive note we sold our old trailer and brought the new one home to start prepping it for the season. If I feel well enough we will head out on March 25th for the weekend. If not, we are slated for Easter weekend in the mountains.
Life is unfair but it’s unfair for everyone so that makes it fair. Grab on to the good days and never let them go.
Do something to help Ukraine this week. I’ve donated to Canada Red Cross. Pray for Ukraine. Death to Putin.