There is a lot I have to write about here. I defiantly need to post a recap of the Global Genes Summit I went to a couple weeks ago but I am waiting for some things on that to come together.
Since then my life has been a little hectic to say the least. I came back from the summit a little early for my senior homecoming game and it is a good thing I did because there was about 10 hours between landing at the airport and being in the ER. Some how my tube seemed to do something odd. Cue me doubled over in pain but waiting till my home nurse was coming for a port access any ways. Of course when she came she called GI and it ended with me going to the ER and being admitted. I ended up being inpatient for 3 nights till interventional radiology (IR) could get me in for a tube change.
Meanwhile during this stay my port started acting funny. It was being super sluggish and hard to flush to the point my nurse had the IV team come and put TPA(a powerful blood thinner generally used in strokes but also to help break up clots in ports) in it. I must have the only port that started acting worse after the TPA. The next day we almost could not get blood return which is needed before you can use a port. A couple days later out of the hospital I was having enough trouble with it I called home care to help trouble shoot.
Come last Saturday I was getting nervous about the port access and rightfully so. There was no blood then a drop, then the nurse flushed it and pull back again and could not get blood again. We messed around for a few minutes but it was not going well. 2 home nurse visits in a row ended with me in the ER. Long story short the last week of my life involved 3 ER trips and one day spent getting blood tests and x-rays in the morning for an IR appointment that was multiple hours late and did nothing in the afternoon. I am lucky because besides a struggling port none of these medical issues were actually a result of declining health.
However my question is what happens when you aren't dying but you aren't living either? That;s the place I am currently in. Last week I only made it to one day of work and two classes with no social interactions between (unless you count my friend having dinner with me after driving me home from the IR appointment since I needed a ride in case I was given certain meds). The week before I only made it to about half my classes thanks to the admission that week. This is not the life I pictured living at age 20, or any other age for that matter. No doctor seems to realize that just because the problem isn't life threatening doesn't mean it is not affecting my life.
Since then my life has been a little hectic to say the least. I came back from the summit a little early for my senior homecoming game and it is a good thing I did because there was about 10 hours between landing at the airport and being in the ER. Some how my tube seemed to do something odd. Cue me doubled over in pain but waiting till my home nurse was coming for a port access any ways. Of course when she came she called GI and it ended with me going to the ER and being admitted. I ended up being inpatient for 3 nights till interventional radiology (IR) could get me in for a tube change.
Meanwhile during this stay my port started acting funny. It was being super sluggish and hard to flush to the point my nurse had the IV team come and put TPA(a powerful blood thinner generally used in strokes but also to help break up clots in ports) in it. I must have the only port that started acting worse after the TPA. The next day we almost could not get blood return which is needed before you can use a port. A couple days later out of the hospital I was having enough trouble with it I called home care to help trouble shoot.
Come last Saturday I was getting nervous about the port access and rightfully so. There was no blood then a drop, then the nurse flushed it and pull back again and could not get blood again. We messed around for a few minutes but it was not going well. 2 home nurse visits in a row ended with me in the ER. Long story short the last week of my life involved 3 ER trips and one day spent getting blood tests and x-rays in the morning for an IR appointment that was multiple hours late and did nothing in the afternoon. I am lucky because besides a struggling port none of these medical issues were actually a result of declining health.
However my question is what happens when you aren't dying but you aren't living either? That;s the place I am currently in. Last week I only made it to one day of work and two classes with no social interactions between (unless you count my friend having dinner with me after driving me home from the IR appointment since I needed a ride in case I was given certain meds). The week before I only made it to about half my classes thanks to the admission that week. This is not the life I pictured living at age 20, or any other age for that matter. No doctor seems to realize that just because the problem isn't life threatening doesn't mean it is not affecting my life.
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