Skip to main content

Nervous Nelly...

Yipes, uh oh...

My Groshong Mediport has been bothering me lately. I figured, eh. But it's supposed to be flushed with saline every month...and It's probably been 10 months. My port is in my chest. My doctor was a genius and while other people have there's up higher on there chest/shoulder area. Mine is tucked away and hidden. People don't even know I have it. I can hook up IV's run them under my shirts and into my purse, where I have a portable pump! Nobody notices!

Ports don't usually have long life spans before they cause problems..and I have had mine since 1997. Which might mean changing it out.  I feel like a disgrace to the CF Community and pathetic by saying this (considering how many surgeries I have already had) but:

I DON'T WANT TO GO THROUGH SURGERY, expecially one where they take out and re-insert a catheter in my jugular.

 I hope it just flushes and feels better. I wish I could flush it myself, I change my own feeding tube when I need to a new one, I do my own IV meds, I'm pretty sure I could take my own blood if they'd let me :-)

 Once I even put a Nasogastric Tube (NG Tube) down my own nose (you insert through nose and run it down the back of your throat into your somtach). I did it out of spite.

[a side track story (I sidetrack a lot), it is about the most scary & frustrating night in my life]

I was away at college, when my intestines twisted into knots;I knew they weren't going to come undone. I had to call an ambulance from the dorm. My doctor (not the "content one" the one before him, who I loved) told them to transfer me right away. They kept me overnight and wouldn't transfer me. They said first I had to have an IV and an NG tube in. After they almost gave me morphine (which I'm deathly allergic too) I had little faith in them. I told the nurse she wasn't putting an IV in my port and to do a regular IV. She missed my vein so many times, I was just getting ticked off (and I'm usually cool with Nurses practicing on me). She finally got to the NG tube. And she kept saying all smug like "See, it's easy, look how nicely its going in"... (All while, I'm letting the tubing gather in my mouth, just to prove my point. I then opened my mouth and let it fall out) My Mom was shocked. lol.  The nurse wanted to do it again. I said "good gravy no, give it to me" I forced it down my throat (I just wanted Dr. Chatrath) At this point, I would have given anything for him. I got transfered and rushed into emergency surgery after I arrived. Annoying nurse. That hospital almost cost me my life. Thank God, for Surgeons like Dr. Vagunta!

Maybe, I won't need my mediport fixed, ts just annoying not knowing. But if I do I hope I get a good surgeon like Vagunta! :-)

Comments

Popular posts from this blog

Close to a Cure?!?!?! and Thank You!!!!!!!!

Help Us Find A Cure & Thank you! Lots of new meds and treatments are being researched thanks to the CF Foundation and the people who support it! Thank you soooo much everyone for supporting me and the CF GreatStrides Walks! I hope you enjoy hearing about the cool new ways steps are being taken towards finding a cure for CF and how everyone has helped me and us (the cf community)! New Treatments And Break Throughs: As you may know, from reading my last couple blogs. Some exciting news was released!  VX-809 + Kayldeco Phase 3 (6 month clinical trials) has started! Which means if all goes well, this could be on the market in the next year or two. This drug helps target the actual faulty gene. It will help improve our lung function (hopefully gain some back, the part that isn't damaged) and will help us to slow the decline of our lungs health tremendously! This is the treatment for my mutations!To read more about this new treatment click Here! Also, there are other medic...

First blog: Hello

My first Blog: A little About Me I'm not sure why I have decided to start a blog, however, here I am.  I have honestly thought about writing about my life for years, but have always chickened out. I have finally decided to share the experiences life has thrown at me. The biggest reason I have been asked to blog by people is because of everything I have dealt with medically. I have Cystic Fibrosis and a few other medical problems...This is probably the best reason why I should blog. I can relate to others who are dealing with medical problems, however,my CF is also why I did not want to write this blog. CF can be embarssing and annoying sometimes... but it  has helped define who I have become to be as a person. Therefore, (yes, even though I want it cured) I don't hate having CF. Let me start off with some basic info and statements. I'm 26 yrs old and have dealt with CF all my life. In this blog you will hear recent stories (good, bad, embarassing); a...

Holding Down the Fort

My husband, Andrew, is currently at Wartburg Theological Seminary and is starting his first week of his second year there. Every year he lives on campus for one week. He enjoys starting each semester on campus where he can build friendships with other students and professors. It's the only time he is on campus. Usually he does long-distance learning, online, from home. It was the only way we could manage him doing a four year Master degree program while working. This week is the hardest for us. However, we have something on Thursday and Friday this week, so Andrew will only be gone 3 days instead of the typical full five. So that will make this week a bit easier than the other semesters. It's hard for Andrew to be away, although I know he is having a blast. We send random pictures back and forth like a book he may be reading or a game I may be playing with our kiddo. It is hard for the kid(s) to not see Andrew every day. We are foster parents and stability is a BIG issue for ...