I really didn't take the CCU doctor very seriously, I thought she was overreacting calling it that, but once I was up walking around, and felt the complete muscle weakness in my quads and calves, I realized that my body really had to pull strength from somewhere to get through those intense hours. It was tough just walking down the hallway one time; my legs really lost their strength over night.
Once I was discharged and trying to get back to anything resembling normal life at home, that was a rude awakening! I realized, okay, my body really took a hit in those couple hours that my blood count got so low. How I got to that point, by the way, is the same thing that's been happening repeatedly in the past six months or so. An episode of bleeding that gets out of control, my body can't keep up with the blood loss, and things get ugly. (ITP / critically low platelets + Ulcerative Colitis / gut infection causing GI bleeding = no clotting happening = bad scenario)
So after all that, I realized the doctors weren't overreacting, they were really concerned, and took good care of me. This was the worst, most serious event we've had happen, and I am lucky to be here ... again ... always.
On Wednesday, I believe it was (my first full day out of the CCU), I had a great friend come to the hospital to visit me. A dose of friendly faces from the "outside world," bringing faith, smiles, genuine care and help to you when you're stuck in the hospital -especially when you have no clear timeline of getting out or solution to prevent this from happening again- that is such a gift! Thank you to my sweet friends and family for coming alongside Hubs and I through this, both this one event and throughout the past eight months. It's definitely been the hardest year of our life together since we've been married, and probably the hardest year for each of us individually in our lifetimes. The people who've stuck by us and trudged through this season with us - you are truly priceless!
Wednesday evening, just when I was starting to get concerned that I hadn't seen my hematologist and wondering if he would be coming by, because we had some things to discuss - he popped into my room like an instant answer to prayer! We had a great chat about putting some notes in my chart for any staff to be able to access, noting that we have a plan in place for when I have to come to the hospital, and basically saying to all the doctors just meeting me and seeing my lab numbers, "Do not freak out! This is normal for her and we have a plan!" It was funny to hear my doctor admit, "When I first met you and saw your numbers, I freaked out! But now I'm used to it." I have a great care team and I appreciate when we can laugh about things together :)
We also set up a plan to go by when I went home. It is basically, to go to the lab twice a week to monitor my CBC (red blood cells - hematocrit and hemoglobin, and platelets, being the most important numbers to watch), and call with any serious bleeding, and if a transfusion is needed, the nurse will triage me to either an outpatient infusion center, or an overnight direct admit to the hospital for fluids and blood if needed.
It felt really good to set up a plan, just because everything has been so unpredictable and crazy the past few months, at least we now have a set idea of what to do when symptoms come up. I realized I have to do a better job of facing the reality of a bad bleeding episode too, and go in for labs and let all of my doctors know, instead of hoping it will clear up on its own.
The rest of the week was mostly a LOT of blood draws, a few more units of blood transfused, magnesium IVs, IV steroids, and starting an antibiotic for aNOTHer infection I got from being in the hospital. Yuck! Thursday night (early morning) I got 90 minutes of sleep, the rest of the night I was awake and in serious pain and going back and forth to the bathroom far too many times than anyone should ever have to! Thankfully that improved slowly over the next few days, and though I could have gone home sooner if I had not had that infection come up, it was good to stay in the hospital until everything was calm and my counts were stable.
|I sure miss my Victory when I'm in the hospital. Highlight of the week was definitely her visit!|
For now I'll wrap this up. I have been to the clinic for three CBC tests since leaving the hospital, and each time my hematocrit and hemoglobin have been good, staying stable above 30! My platelets were 7,000, 8,000, and then most recently, 11,000, which is no where near normal (150,000-400,000) but it's great to see them stable and even increasing a bit.
My guts are staying mostly quiet, and no serious bleeding issues, Praise the Lord!
It has been a true gift to be able to be home with increasing energy and strength for more than one week. I have been able to do things I haven't done in months, maybe even all year! So many things go by the wayside when you're in survival mode, from regular cleaning chores around the house, to taking time to enjoy yourself with a hobby project or outing. And getting to be a hands-on mom again, after so many days and weeks of pain and weakness and needing help to even change diapers, has been the BEST!
So that's part two of my crazy week. Thankfully, since I've been home things have gone from crazy to calm, and are going well! Quiet and stable is much preferred to crazy and serious :)