CF Clinic, Power Port, Grief

Yesterday (5/5/16) was good ol CF clinic.  Nothing spectacular to report there really in the sense that we didn’t change anything or add any extra tests.  My PFTs (lung functions were) basically the same.  My FEV1 was .93 L/ 31%.  My first 2 attempts were identical at .89 L/ 30%.  If I were a healthy (NON CF) Shannon the predictable FEV1 I should get is 2.96 L.  That is based on my age, gender, height, weight and race.  

I am not surprised by these numbers.  They are basically the same as they were and have been.  I have settled in my mind that somewhere between 30% and maybe 35% is probably my new baseline normal.  I am being evaluated for transplant and all which means they have to be low to even start that process.  That’s not to mean that I don’t and don’t try to bring them up but at some point there is nothing you can do but accept where you are and roll with it.  Everything else about my clinic visit was pretty routine.

Today (5/6/16) we were up before the birds and headed to the hospital for my purple power port (PPP…haha) placement.  Everything went just fine.  They numbed the area up real good and gave me some “loopy” meds so I didn’t care what they were doing to me.  The took out my old 9 1/2 year old port and then placed the new one.  Pretty routine with no problems.  However, it is now 6 hours after the procedure the numbing is wearing off and I’m beginning to feel what they did since I don’t have any “loopy” meds in me anymore.  Hopefully this port will last me as long, if not longer than the last one.

Now about the last word on the title of this blog post, grief.  It has been 3 months and 17 days since my mom passed away.  This week has been an extra hard week.  I’m assuming because it is Mother’s Day this Sunday and all.  I have had more depressed days than non depressed days in the last 10 days or so.  I was having some great days and then BAM, like I hit a brick wall depression.  The crying spells, lack of motivation, wanting to sleep and not deal came on quick and with a vengeance.  Anything can bring it on.  A song on the radio.  Someone talking about their mom.  A mom post on Facebook.  A picture of my mom.  Something that I would share with her and can’t and more.  This is going to be a tough weekend.  Heck it’s been a rough week.  I didn’t think I had any tears left and more keep coming.  It is still very new that mom is gone and I still don’t want it to be real.  I’ve said it before and I’ll say it again. “God, you’ve had her long enough.  Can we have her back now please?”  I know that’s not possible but I miss her so much that it physically hurts.

I am going to go lay down now that I am starting to hurt.  Thank you for all of your love and support.

Until next time…

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