Just wanted to fill you in on some of the important doctor appointment dates that I have been waiting on. Of course they are not soon enough for my liking but I shall deal with it.
Before I even get into these appointments, YES taking care of me IS a full time job that doesn’t pay well, however my reward is my family.
- Monday I had counseling in which we talk about a multitude of things. Some being my mama, my declining health, transplant, etc. I see her about every 10-14 days.
- Today I had my psychiatrist who prescribes and monitors my anti-depressants, anxiety meds and sleeping meds. I see here every 3 months now that we feel like I am evened out on my meds.
Now for the ones we have been waiting for….
- Wed, April 27th I am scheduled to see the Vascular surgeon to discuss swapping out my old port for a new power port. Hopefully he sees it my way and I can get it done ASAP! It is best to try and get this done when you are not actively sick otherwise they will postpone it. 😦
- On the same day (the 27th) I am FINALLY scheduled with Pain Management. I had to fill out a novel of information online and was told to make sure I had it all done because if I didn’t that may be terms for a reschedule. Umm thanks! Mind you this is just for the CONSULTATION! I then will be scheduled to have the trigger point/intercostal injection procedure done. Aye aye aye aye… He did say that it is much quicker to get in once you are “in the system.” Thanks dude, it’s only been 10 weeks of this pain but will be 12 weeks by the time I see you.
- Then the very next day, the 28th, I have a GYN appointment to check on the NuvaRing process with constant use and not skipping the usual week. (TMI for the guys I’m sure)
- Then an hour and 40 min after that appointment I have CF clinic, just checking up on all aspects of everything.
Maybe I should just get a room for the night that was I don’t have to drive back there 2 days in a row for very long days at that.
TRANSPLANT TALK: We have my transplant evaluation scheduled for June 6-9! It’s getting even more real now that there is an 4 day span of appointments on the books for the actual evaluation. I would be lying to you if I said I wasn’t scared because I am completely scared. Transplant seemed so far off for so long and it feels like it has smacked me in my face saying, “ready or not here I come!”
As a family member, friend (close or distant) or even if we are acquaintances, it is ok to be scared for me. It’s a huge life altering decision to make! What I DO NEED is family and friends praying for me (wisdom for decisions, health, strength), sending positive thoughts my way, to send encouraging words (even if I don’t reply, sometimes I am just too tired). It’s ok to not know what to say because saying “get better” is very cliche because I won’t “get better” because CF is progressive. Although I can get better/level out for a time being and I’ll take that. I try to embrace the good days to the fullest and rest on the bed days.
I am trying my best to work through all these emotions the best I can and with my doctors, counselor, friends who have been there and friends who are in the same place as me. Fear is a natural. Mine is the fear of the unknown. I don’t like not knowing what to expect. I want ALL case scenarios, even the worst case scenarios. I need to know so I can prepare myself mentally for things that could go wrong because as weird as it sounds that helps me be calm and level headed.
For instance I had my first bronchoscopy back in like 2008 maybe (you know my memory) and my doctor didn’t tell me there was a chance that I would need to stay on the vent for a few hours afterwards to give my airways a chance to calm down due to my asthma. Well guess who woke up on the vent and freaked out? Yep, this chick right here. I ended up being on the vent for like 12 or so hours. That was so scary. If he had told me before hand I could have mentally prepared myself for it and known what was going on when I woke up with a tube down my throat. Needless to say my doc got an ear full from me. haha
I am open to any question you may have about the transplant process. I will answer them the best I know how. If I don’t know the answer, I will find it. I think that about covers todays edition of CF Happens. haha
Until next time…