Friday, July 1, 2016

Happy to have a Flawed Tube

So as I have spoken, written, and verbally  complained about my newest feeding tube and how much "I hate it" (which it is very flawed in design) and I have spent my last while in clothes that are covered in sticky medication and formula... At some point every day...And not to mention my house! Though it is not in fact the and I quote "Fancy Pants tube" as my doctor calls it. And I quote, "that his youngest patient needs to be able to go to the beach in her bikini because she has a life to live" (I don't exactly know why my caring & compassionate slightly goofy accented GI says that exact quote every  time we change tubes) I mean we live in AZ there is no beach, sure I could vacation... But that's not the reason haha It's silly. But in his defense I am like literally the only patient that's not old haha but he understands the fact that I am young and have a life to live!   but he comes in and we laugh and we joke because "having a feeding tube is not the end of the world." That was the first thing he ever said to me. We had to agree on one thing to continue treatment And I agreed then, I knew that before then... And maybe he is tired from being overloaded and working until midnight and coming in early every morning leaving his family behind to help people like me. And as a result he did not have my "fancy pants tube". We have to order it and wait. And I have been unhappy mostly frustrated, because I had a tube I literally loved, not because it was low profile tube. Because it had all the bells and whistles. And now I don't have all those amenities. The amenities I had grown very accustomed to. Over the  past 8 months. And low profiles are way more comfortable they are lighter and the extension tubing sways with movement. They don't kink in your sleep and set your alarms off! It is like taking a fork away now you am have a spoon and a knife only. I used my old tube so much it fell out from being worn out. And it had a hole in the j portion from wear and tear! in the last month I was not able to feed at a normal rate  and becoming malnourished due to that hole in it!! That leak wouldn't show up in x rays...so it was a blessing it came out. I wouldn't have gotten any better with it. (they only have like I think a 4 month "lifespan") but since getting the new tube... I mean I have just been ready to get rid of this bulky, stupid, annoying, problem causing  tube. Since day 1. (I had to have something I couldn't have no tube)  I am going to go back to get my button tube back, when the hospy gets it in ( I kinda actually need to go back and change out tubes for a button because I am at a high risk of throwing this tube up. It happened within a month or so the last few times. It stopped after we found the low profile tube. It has a special clamp and  is extra weighted at the end to keep it in place. So with this new horrible tube  I am more worried about when it's going coil like the rest of them prior to my "fancy pants tube" I really have been feeling just irritated about living with this many of times called "stupid tube" I am sick of not getting my medicine in me because it comes back out... Leaving me not knowing how much to replace because I'm covered in it and the floor, counter, or car... I mean day two of tube we were in the valley and it had literally detached from my feeds and I was feeding my pants and when we got to the store I was like oh no! Nobody likes being fed on it's gross! Yes it is just formula but have you smelt formula lol...and rudely waking up in a puddle of it is not any more fun... And the old tube never did that once! Not for one second have I been even the slightest bit grateful to have this new  tube...as I am sure you can see reading this.... but I opened my laptop this morning and I looked down and I saw this tube & one thing crossed my mind "how lucky am I to have this very tube to sustain me life?" I mean you can see from the picture nothing special here. Just a tube and a laptop.
How has it not even crossed my mind for weeks that without this tube (that I hated so much and fixated all my thoughts about it so negatively.) I couldn't even appreciate it's value? It holds a pretty big value too! I would be dying? Literally starving to death without it. Too many Gastroparesis Warriors die weekly from Gastroparesis. They literally starve to death. Because their bodies reject feeds. They quit absorbing, even TPN or have too many complications to have any type of feeding tube. I had let myself forget that I almost died because my motility specialist refused to do anything but a few Ivs at Iv therapy a week. At my last appointment there I cried and begged that (keep in mind motility specialist. A motility specialist specializes in Gastroparesis (slow gastric emptying or rapid gastric emptying I am unsure if rapid has another name))  this doctor was so busy being "the guru" she totally missed the boat with me. Luckily I had a good nutritionist there who did give me some good info. She also warned me if I could not complete a liquid diet and soon I would be in need of a feeding tube up my nose. I couldn't keep a sip or a bite of food down. Despite my begging, that motility specialist turned me down on even running some labs to see if I was really doing "okay" without eating for about three months. I was so mad! I remember the whole way home I just was crying and I just remember feeling so strongly that I wasn't okay.  I saw my pcp ASAP and she listened (she was new I did not have much faith in a pcp at that point they really liked to tell me I was just crazy or depressed) not this one. She listened. She made a plan. She too knew I was not okay without eating. She immediately started me on TPN I had a picc line placed the next morning and I started TPN that day. (She ran labs the night before so she would know what I needed in that TPN) now the TPN was suppose to be a quick fix and just to keep me stable until I could find a GI to take over... Well I did my TPN and I came back in two weeks. She did not tell me or call me to tell me the result of the lab work she ran. She waited until my appointment two weeks later because she knew (by doing weekly labs and that she already has put me on TPN. Which is nutrition through your blood stream. It literally feeds your organs and nothing goes through any of your gi tract) but by  then I was ok again and stable. She revealed my body had started shutting down. I was literally dying. Her listening to me and believing in me. Then taking  a stand that wasn't hers to take but doing it anyways saved my life. Out of over thirty GI offices contacted... One GI took me. I had found my help!! Little did I know I was going to literally be asked,  "if I was crazy" then he would say that was what was wrong with me. I was on TPN and almost died because I was in fact crazy? And it was stupid to be on TPN when I could have a traditional feeding tube (using my GI tract) well that was our goal??? He said he would do a gj tube but After the appointment almost immediately, my Mother and I decided there was no way he was touching me. The search continued and a friend found this amazing interventional Endoscopist and he would be willing to put my tube in. I first had to go through my pcp and have nasal-Jejunal tubes (for insurance purposes to prove it would work) I had three NJ tubes in three weeks and my picc line (how I was getting TPN ended up ending pulled due to a blood clot around it in the vein) luckily days later I had surgery scheduled for a gj tube placement. My 
feeds have never reached goal. But they do keep me nourished properly and I gained some weight and for the most part my weight is stable a wonderful sign. Fast forward to today...Here I am on j tube feeds and though my situation currently is not perfect. And I did not gain a feeding rate to both feed and properly hydrate myself especially with POTS where we need extra to keep our blood volume normal.  I now use a port for fluids. (I am having the best next treatment to eating) I am off TPN.  I am okay. I am getting my nutrition today. I am absorbing my medications.  I'm pretty lucky to have been blessed with Jejunal  tube feeding and even to have this flawed tube. Because as you now know they are not easy to get. I went through a lot to get a gj tube... I can eat a little now. I can vent and not be as sick and sometimes eat a little more by mouth due to draining my g tube. I lost prospective. I forgot the war I fought to get where I am. I totally failed to see that my flawed new tube was better then none. I'm so blessed! Because without it I am sure I'd be a lot worse then frustrated... I've been being unappreciative to this tube. But for now I am eating! I am living! I am getting my medicine though it may not be perfectly receiving meds. I am getting them for the most part... Count your many blessings every single day! Even if you're feeling a little blind from tunnel vision-Chelle