I can't really remember past yesterday, as it was a completely exhausting day and my brain decided to take a short strike, I think. :)
I titled this post, "Should I Start a 'Medical Bucket List?'" because lately, it seems like I am setting personal records and doing things I've never done before -not in sports or business like perhaps I wish I could, but in the hospital arena. I set a new record last week - 15 vials of blood drawn in one sitting. And on Monday, I will be seeing a hematologist (already done that - nothing new there) and getting a bone marrow biopsy (that one is something for the 'bucket list').
It all started when on Thursday I went into the lab to get some blood work done, in preparation for a check in appointment with my Rheumatologist coming up this Monday. No big deal, just some basic's: CBC (blood counts), CRE (inflammation levels), etc. No big deal, I thought. But Friday morning when I woke up, I had two voicemails waiting for me, from that familiar phone number of the hospital's main line. I've had that experience more than enough times, and know it's not the beginning of a quiet day. Ugh...
The first message was from the infectious disease (ID) doctor I saw last week; she was calling to discuss the results of my 15+ blood tests. The second message was from my hepatology nurse practitioner, who was contacted by the ID doctor because of some unusual numbers that showed up on my CBC. I called each of them back, eventually got in touch with both practitioners, and learned that the results from last Friday's fifteen plus tests were looking good. No infections, no viruses, nothing showing up that pointed to why I had those swollen lymph nodes. That was all good news.
Then it was explained to me that the blood work done last Friday, as well as the blood work done on Thursday, had come back with concerning platelet counts. They have over ten years' of records and my platelets have always been stable. Early September they took a drop from 200,000, and now they are below 50,000. The term for low platelets is Thrombocytopenia. This is concerning because platelets are what causes your blood to clot when you are bleeding. A count this low can lead to serious problems if you are in an accident, and if they get lower you can bleed/hemmorhage spontaneously. (Yeah, yikes!)
So, my medical team got on the case. My ID and my Rheum talked to my liver nurse, she talked to a hematologist, and the hematologist worked me in to his full schedule for a consult and the biopsy on Monday. I got between ten and fifteen phone calls from nurses, doctors, nurse practitioners and schedulers yesterday. I had to listen, learn, ask questions, process, wrap my mind around everything as best I could, explain it all to Hubs, and once everything was rearranged, scheduled, and understood somewhat, I had to ensure our sweet Victory had someone to hang out with and that I had a driver. Talk about [MENTALLY EXHAUSTING].
What an exciting start to the week- getting a needle stuck into my back. Isn't this a lovely illustration of the procedure?
Even though that man is just a drawing, he looks so uncomfortable I feel compassion for him! Totally tense and cringing! I'm grateful that the Hem Dr. decided all on his own to give me something "to make you still like us," as he put it. When a doctor flat out calls something "rather painful," instead of using their typical underwhelming words like 'pinch' or 'discomfort,' you know it will be an experience.
So my rockstar med team is looking at several possibilities of why my platelet count dropped. They are looking at:
- Infection. Likely not this, because I just finished all that testing and all looks good.
- Immune reaction. (ITP) Your body can mistakenly destroy platelets if it thinks they are a threat.
- Cirrhosis. My liver supposedly has microscopic cirrhosis throughout, and this can affect platelet counts.
- Autoimmune disease. Active autoimmune disease like RA and lupus can mess with platelet production. My body is messed up with autoimmune reactions, and this is my hunch as to why the platelet counts are screwy. We'll see. I think my Rheum was looking at this possibility when he ordered 14 tests for me today - checking every possibility.
- "Bone marrow problems." Hence the bone marrow biopsy. They didn't say exactly what they mean by "problems," but it could be a number of things. They want to make sure my bone marrow, where platelets are made, is doing what it is supposed to be doing. The Hem I will see is well respected and a rockstar in his field, so I hear, and I know I'm in good hands as far as getting any answers in the biopsy.
Something else that can affect platelets is an enlarged spleen. I was told after my last CT scan (last spring I think?) that my spleen was a bit on the large side. Hypersplenism (swollen spleen):
Two applicable ways this can happen are from liver disease/cirrhosis and, "Various connective tissue and inflammatory diseases." I found that very interesting, as that is what I have with polyenthesitis, diagnosed by my Rheum last year. Perhaps that will turn out to be something?
But that's it for now. I'm on strict orders to do no high risk activities, watch for large bruises or nosebleeds, take it easy and go to the ER immediately if I have any bleeding.
Let me tell you, I am ready to be done with medical tests and appointments and all of this for a while. Hopefully Monday's test and the following rigamarole will be good, my platelet count will climb back up, and my little family and I can go away for a little trip. I think we deserve it; it's been one crazy year for this Momma! :)