Gi Appointment+ Admission?

(not my picture)

So yesterday I had a doctors appointment for my nausea with a GI doctor. I had this guy, i forgot his name so lets call him Jeff, I met him when I was in the hospital admitted last time. Sorry to break it to ya Jeff, but I don’t like you.

Now that we have that established, let me continue. So in the beginning of the appointment. I got my vitals, weight, and height taken. I’m basically 5’3 which i’m happy about, and I lost 2 pounds from a week ago.

When I met with him, he was talking about doing CBT, or cognitive behavioral therapy, to “manage my symptoms.” Neither my mom nor I understood how that would have helped, but he seemed pretty sure of himself, saying that it was the thing that helped the best. One, i’m already in therapy, two, HOW would that help, like huh?!

Anyways he brought in his attending since he was a resident. I don’t have anything wrong with resident doctors, I’ve met too many to count, but this guy seemed like he had no idea what he was doing. I’ve met better interns.

The attending was much better. He understood that I am at a low weight and how dangerous that can be with cf. He explained how I am malnourished and that we should do a scope.

Jeff did not understand that weight loss was apart of my cf, and didnt understand that it could make me sicker. Right now I have a lung infection so it could make them worse and more frequent if I dont get my weight up.

Some time later, my pulmonary doctor called my mom. Im going to be admitted early next week for a lung infection and testing/weight loss. I am going to do iv antibiotics and get a scope done.

Anyways, stay tuned for more updates, have a great day,

bye.

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Pushing to hard with a Chronic Illness

The problem with chronic illnesses is that we hold ourselves to other people’s standards. We expect ourselves and our bodies to be able to handle as much as a ‘normal’ persons, when the truth is we can’t.

Someone might be able to go to work, go shopping, and take a shower, but with a chronic illness, it makes even simple tasks difficult. Pushing ourselves to much, trying to do as much as a ‘normal’ person can, leads to a downfall in our health.

I will push my body over the edge, trying to do school, art, even socializing. Even if I don’t feel good, I’ll push more. 4 hours of sleep. Staying on track with school. Basic hygiene. It’s all difficult.

On top of basic tasks, I have to remember to take care of myself. Treatments, medication, countless doctors appointments, it’s all difficult.

Coughing fits and flights of stairs drain my energy like a vacuum. Our bodies are working so hard to fight off bacteria and germs, that it pushes us to have to step back and look at things differently.

When trying to plan things, we have to focus our life away from our illness, try to not let it consume us.

That’s all for now,

Bye.

Hospital Day#14

Today was the last day of antibiotics. I did my last doses of both cefapime and tobymyacine at 4 and 4:30am. Right now i don’t know when i’m going to be leaving the hospital, but my doctors are focusing on me gaining weight. I go two viruses from the hospital, c-diff, and Nora virus. I was up at night throwing up, but that subsided.

I was hooked up to fluids 24/7 a couple days ago, because of the virus I wasn’t drinking a lot. Now i’m just on tube feeds 24/7. I’m on a formula where it is 111 g of pediasure and 455 of water. Earlier today I was really nausea and threw up more than 2 liters, so basically I didn’t digest any of the feeds. I’m not eating orally that much, just a few bites of something here or there.

Whatever I eat I get nausea, and sometimes i’m still nausea when I don’t eat. This has been happening for maybe 2 years and were just now having doctors look at it. I’m going to get a gastric emptying test done which tests for gastroperisis, but I have to wait til I get over these viruses.

I have to wait out on the Nora virus and just let it run its course, but I’m on an antibiotic for it that doesn’t go through my picc.

I finally was able to leave my room today. Since I have those viruses I was on isolation and couldn’t leave my room, but now since i’m feeling better I can.

That’s all for now,

bye.

Hospital Day #7

So a lots been going on the last day or so. Yesterday I had thrown up around 6 times. Dry heaving, that fun stuff. I basil you slept all day yesterday. My heart rate was steady around 125 and my temperature is 100.9.

I’m still losing weight and so I feel weak. I did do tube feeds, but used a boost breeze instead of my peptamen. I threw up this morning and continued to dry heave afterward. I got an ultrasound and nothing showed up. I also got tested for celiac and ibs, both negative.

My blood sugar got tested and was normal also. There testing me for c dif and May do a gastric emptying test, which I’m hoping they do. It tests for Gastroparesis.

I’ve been hooked up to I’ve fluids since I haven’t been taking anything in.

I’m planning on doing a marvel movie marathon. Yay.

I don’t really have anything else to say. Thanks for all the support.

That’s all for now,

Bye.

Hospital Day #7

Sorry I haven’t updated in awhile. I got a picc line a few days ago. It went well and it is in my right arm.

I am staying for two weeks on iv antibiotics. I got pfts Thursday and had to do a 6 minute walk with a pulse ox on to monitor oxygen and pulse. I did around 10 spirometer tests and 3 fulls.

It’s now the 7th day, so one more week to go. I’m trying to start tube feeds again, using one peptamen 1.5 can. Last night I was able to do half of one and took a nausea medication, which didn’t do anything.

Today my friend visited me. She brought me a ballon and a cute hedgehog stuffed animal, which I am super thankful for.

My sister and Vanessa also visited me. We walked around the hospital and I ate some delicious candy that she gave me. So v, if your reading this, thank you for visiting me.😋😄😃😀

They decided that I’m going to see a gi doctor for my nausea and most likely do a gastric emptying test to test for Gastroparesis.

I’m waiting to do feeds tonight because I’m having some pretty bad nausea.

I’ve decided to have an office marathon starting from the beginning. I’m on season 1 episode 2.

That’s all for now,

Bye.

Hospital Day #1

The wonderful life of a Cfer.

For a recap, I got admitted last night through the er. I came in with bad breathing problems and got admitted for them and weight loss.

12:26pm

Right now I’m just sitting and watching my 1st movie of the day. I’m doing my 2nd vest treatment. I do this 4 times a day, along with albuterol and a nebulized albuterol. The plan is still pretty vague. I lost 5+ pounds since November, they are having me do a clean out through my gtube. I had gotten stomach and chest X-ray while in the er and to put it nicely I was ‘backed up’ which is nothing new to me. I am getting iv antibiotics, but they aren’t sure wether I’m going to do a full course with them. I have been having my normal lung infection symptoms for the last month so I want to bite the bullet and do a full course, but it’s up to them.

I’m going to have pfts tomorrow to see how my lungs are and if I should wait or proceed to antibiotics.

———–

6:10pm

I had to get another iv. I’m on the clean out right now and I have to be hooked up to fluids because of it. I also am on a liquid diet.

Still don’t know if I’m staying, I’m going to do pfts tomorrow and we’re going from there.That’s all for now,

Bye.

500 Posts

So many posts… the time I’m uploading it’s more than 500 ports, but you get the idea. I can’t believe I’ve uploaded 500+ posts, I wonder how long I’ve spent on this blog..? 😂