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The IV routine

September 18, 2017

 

 

<--Snapchat filters keep me entertained!   So following my latest appointments and my feeling that something nasty was starting to grow in the lungs, I pretty much knew the call was coming soon for IV meds. I've been lucky enough to go a really long stretch of 3 months without them, and I started to get accustomed to being free of my port access and extra tubes to carry around and such. I was dreading the inevitable and Johnny even surprised me with flowers on Friday bc I think he knew how much i was dreading them this time around) After speaking with my doctor earlier in the week, I learned that my feelings were correct and I was cultured with MRSA, Pseudo and my usual trichosporon mycotoxinivorans (fungal). But since I am already being treated for the fungal with my oral medication that I have finally adjusted dosage to, we are only treating the MRSA currently with IV meds (I was able to compromise with my Dr and try a different inhaled antibiotic for the pseudo for a week and see if I begin to feel better without treating me with a second IV med). 

So on Thursday night Johnny accessed my port and Vancomycin and IV hydration was delivered to the house. Unfortunately with MRSA, there are very few drugs to treat this infection and eventhough I have been on Vancomycin more times than I can count, I still have very bad side effects when first initiating the drug into my body. I also am well versed on all the adverse affects and what to look for if necessary to call Dr or stop infusing immediately. However the side effects I experience are just the usual price to pay to get rid of the infection. So for the last 4 days I have soaked my sheets from sweating and have gone back and forth from sweats to chills all day, I have boughts of nausea and vomiting but much less than I've dealt with previously when on more than 1 drug, I have had muscle aches and pains and overall extreme fatigue and weakness, and during infusion I get extreme itchiness all over... (I've discussed with Dr on several occasions and was advised Benadryl  20 min prior to dose which helps a lot with itchiness- not with fatigue).  The first 2-3 days of this is absolute hell... There is no sugarcoating it.  Everytime I think to myself "I don't remember it being this bad last time... this is way worse than I remember.. I don't know how much longer I can do this... when is the pain going to stop already?!" and EVERYTIME my Mom, being my voice of reason, calmly reminds me that I say the same thing everytime and it always eventually stops. I will get through it. Well.. obviously Moms always right. ;) After 4 days of feeling lifeless I am finally beginning to feel human again. I am in no way back to my baseline or ready to go back to exercise or daily routines but the feverish feelings have subsided and I am able to do basic activities at home without too much assistance.  Despite all the physical pain that comes with CF, i honestly feel that being on IVS is harder for me mentally than physically. I know from speaking with other CF women that this is a common issue in the community and I'm sure it translates to others with chronic diseases and illnesses as well. It is something that Drs and medical professionals touch on but probably not as much as it could be.  Being a 31 year old and being scared to take a shower alone at times, or not being able to get out of bed long enough to cook a meal or having the energy to change your own bed sheets takes a mental toll on your ego and can easily lead to feelings of decreased self worth. I have the best support system who want to help and I am so grateful but I still have to consciously fight away feelings of guilt that so much time and effort is taken to keep me well. I can sit down and say logically that I'm being ridiculous and that I would do anything for someone in my situation but emotions are not logical. They are emotional... IV's can be very isolating and I often miss important events or plans and it can be very frustrating..  so everyday, when on IVs especially, I try really hard to be positive by doing 1 thing that makes me happy or proud of myself. It sounds super corny but It can be as small as accomplishing 1 task that needed to get done... even if its a chore (I'm happy to get it done) I've also been trying to give back more to others in need, maybe this is for selfish reasons because it DOES make me feel better but I still don't think it undoes the deed. Even just surprising someone with a package or donating clothes, it makes me happy to think about making someone else happy. Anyway...  this is how I'm trying to avoid the IV blues lately. Today I made myself happy by getting OUT of the house for the first time in 5 days and picking up my own meds and getting labs drawn followed by a coffee run ;) I'm completely exhausted and due for another IV dose so now its time to lay back down and put Netflix on! Hope everyone is off to a great week already!! :)

 

XOXO-Salty

 

   

 

 

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