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Room with a View

October 13, 2017

<--- Room view this morning    TGIF!!! For most people that means only one more full day of work, for myself it means only 3-4 more days in the hospital. No real complaints though, this visit was a combination of voluntary surrender and coming to terms with a slight loss of independence. After only 7-10 days off of IVs, my body was beginning to show signs of returned exacerbation or failure to eradicate the original infection that was so comfortably living in my lungs. After a few days of extreme fatigue, hemoptysis (lung bleeds) and inability to perform daily tasks without uncomfortable breathlessness I threw in the towel and contacted my Doctor. I decided that IV's were needed, I would surrender myself to inpatient hospital stay this time around. The reality is, the last few times I have been on IV's combined with my lower lung function, I have had a very hard time being on them without much assistance and it has caused a strain in my personal relationships to an extent. This does not mean that I don't have the best support team EVER.. it just means that I have to use my resources wisely right now. My parents live across the street and do SO MUCH for me and my husband that It is beyond what I could ask for. However, they both work full time and are full time grandparents as well and with transplant (hopefully) in my near future, I want to use my resources wisely and have them be rested and all hands on deck for the big show!! My husband works for the both of us right now and has a physically exhausting job with manual labor, he helps with the important stuff like my port care and has been amazing in emergency situations but in all honesty he is too exhausted to wait on me when he gets home and I really can't blame him for that. So instead of draining my resources, I'm surrendering to the "room with a view" for the full hospital rat experience this time.

The drugs are no new feat, neither are the side effects like sweats, chills, constant itching and burning followed by Benadryl daze. Around the clock IV meds, nebulizers and chest physical therapy... all too familiar in my world.  But what IS new, is the inability to leave a confined room for 4 days, or the inability to feel really CLEAN in 4 days or the disgusting slight smell of stale cigarettes in your bathroom that will not go away despite cloroxing every surface of the room upon admission (thanks Johnny).  But there are positives that I can get used to....despite having to let go of my OCD with medication (the times and order that I take them), it is nice to be able to rest and have them delivered to me. I am still considered very "independent" in hospital because many meds they will scan and just drop off in my room and I administer myself which is nice. Unless a nurse has personally worked with a CF patient, they usually dont see some of the medications I am on or the pharmacy wont even have some of the specialized medication until 24 hours after I'm here. For this reason I usually bring some medication into hospital and they allow me to administer my own and they record when I'm taking it. I'm currently taking my own enzymes, my own Orkambi and dosing my own insulin... which just makes eating for me much easier than waiting for a nurse everytime I put food in my mouth... id lose so much weight if I did that! ;) ... and despite not having top notch food, the meals are delivered and I don't have to cook, which is amazing!! My body truly gets a chance to do NOTHING but rest and recover.... and aspect is very new to me. It is something that I think is necessary at this stage in my disease and I'm learning to be OK with that.. even if I'm stuck inside these 4 walls.  Another positive I'm finding out is that I am way less lonely here than I am at home on IV's. Usually while everyone is at work, I am at home by myself with Fuzz and no human interaction until John gets home and at times that we are on different sleep schedules, we will barely get to interact much at all, especially when I'm sick and need more rest. So even though I often get annoyed by the beeping of monitors and chatting in the hallways at 5am during hospital stays, I still get to interact with people at anytime I want. I dont consider myself needy and am OK with being alone for a while but I am doomed a "people person". I don't always like everyone I meet (haha- sometimes I'm a cranky old lady at heart), but I still enjoy being social and thrive on human interaction, always have. I can remember my Papa being the same way when I was younger..in and out of the hospital, he was always talking to people.  I have been lucky this stay with very good nurses and staff (always wearing gloves and face masks) dropping in and out throughout the day. The staff and visitors make days fly by. I am on contact precautions so its not recommended for me to leave the room often to avoid spreading germs but I was actually able to walk around last night after visiting hours (with my mask, dragging my IV pole and oxygen) just to move my legs more so I don't feel weak when I get home from lack of moving.  This stay has given me a different perspective that I don't think I would have seen if I was forced to do this when I was younger. I am so thankful that I was able to be independent at a younger age and take care of myself at home while balancing these medications. My parents helped a lot at home, the first year or so when I first started IV antibiotics at 16 years old, but shortly after I began doing them mostly myself. I know that without a doubt, if my doctors or parents wanted to put me in the hospital earlier I would have thrown a fit over it. But now that I know it is necessary for healing, I am accepting it and trying to view this as a much needed unusual vacation destination.  The more I accept it as a positive addition to my care plan, the more it begins to feel like I packed my bag on Tuesday and had Johnny drop me off to NYC to request a room with a view of the Hudson River. Perspective really is everything!! 

 

XOXO-Salty

 

 

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