Happy New Year!

I wrote this post a few days ago, but Blogger and my computer gave me all kinds of trouble and froze multiple times, so I walked away from the situation until we could all settle down. (LoL) We are all getting along much better now, I'm happy to say, so here is another update :)


It is now 2013... we made it! This is going to be a great year, I can feel it. A year of miracles, healing, favor, good things!

I managed to stay out of the hospital through Christmas, and oh how sweet that was! However, I had a bad UC flare at that time and with my low platelets, lost too much blood. Got my blood counts checked (CBC) on December 26th, and we were hardly out of the lab before my doctor called (I'm used to this by now) saying, "Your platelets are low!" etc etc...
It took some convincing by my Hubs, but finally we got my doctor and his nurses to understand that I got my labs done in order to check my red blood counts - hematocrit and hemoglobin - because I knew I had lost much blood and was feeling dizzy, seeing spots and getting winded walking a few steps across the room. One day later I was in the hospital for thirteen hours and got transfused two units of blood.

Here is where I give a huge shout out to blood donors - thank you!!! It is so cool to me that when I have to get blood (once every few years it seems), there are multiple people in my world that volunteer to donate their blood to me, or share with me that they regularly go to donate their blood, especially those with rare types like O negative. You guys are my heroes, thank you so much!!! Donating blood is such a neat thing to do if you are healthy and strong; you really are saving lives!

After my blood transfusion I felt much improved with a lower heart rate and breathing easier, but I have lost so much weight in the past few months, my muscles are just so weak. It is no fun! Then when we got home, Hubs was so kind as to share his cold with Victory and me, and with my low white count, mine turned into the worst sinus infection ever. I was wishing to be in childbirth labor the other night, instead of the sinus pain, it was that bad! I avoid antibiotics, but in this case it seemed really important to get them, so I went to the doctor the other day and started a ten day course. And praise God, every day since then has been a small improvement. Being a transplant patient with already suppressed immunity, I always take longer than average to recover even from a cold, and this isn't any different. But it could be a lot worse, and I am thankful I have been able to rest every day and focus on getting well!

So needless to say, we had a quiet New Years' Eve and Day at home, but it was good to rest and just be together. I'm grateful I was not in the hospital over Thanksgiving, Christmas, or New Years! It has been a challenging season, but things are getting better every day. I'm seeing it and also believing to continue seeing it! I have lots to do still in this life; I'm not going anywhere anytime soon :)

A huge part of why I am grounded through all the health crises I face, is that I look for and allow people of God with wisdom to speak into my life. I want to keep things in perspective of my faith and God's P.O.V., not get caught in emotions or negative thought patterns. Through conversations, books, podcasts, whatever the resource, there are so many opportunities out there in this age for us, at our fingertips. I challenge you to dive into some great books or download some podcasts this year. Some of my favorite authors/speakers are: Kevin Gerald (his books Mind Monsters and Forces That Form Your Future are must reads!), Steven Furtick (his books Sun Stand Still and Greater will grow your faith and your vision for life),  Mark Batterson (I just read his book The Circle Maker in November/December. If you'll forgive my paraphrasing, it is based on the legend of Honi, who in a horrible season of drought, drew a circle in the sand, started praying for rain, and did not leave that circle or stop praying until God answered his prayer. The book is full of stories of persistent, courageous prayers leading to miracles, and it will give your prayer life a great kick in the pants!)


I got a Barnes and Noble gift card for Christmas, and just bought Joel Osteen's I Declare: 31 Promises to Speak Over Your Life for my Nook. This book is so encouraging. I am excited to learn new ways to speak God's promises of life and health and promise into my future. In many places throughout the Scripture, we're reminded that our words have creative power, so use your words for good things. "Words kill, words give life; they're either poison or fruit - you choose." Proverbs 18:21


I think the best resolution we can make every year, even every day, is to continue to grow and develop ourselves, our faith, our vision for the legacy we want to leave behind. When we achieve that, we affect not only ourselves but everyone and everything in our lives, in a good way. What an awesome privilege we have in life, to get to grow and become better!

[Bone Marrow Biopsy] or "Should I Start a "Medical Bucket List?"

How was your week?

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! :)

Update: (I Don't Have an) Infectious Disease [Yay!]

Just a quick update:
I went to my appointment with an Infectious Disease specialist today. She wasn't concerned about anything hinting at a bacterial infection, it turns out that the cultures were probably just contaminated somehow between my surgery and the pathology lab, which is fairly commonplace. So, no antibiotics for me!

The Dr said it is more likely that I had a virus of some kind, and they usually just run their course and that's it. In order to rule out a virus, she ordered a bunch of tests to see if anything shows up that was obviously the cause of my swollen lymph node. She ordered tests for a bunch of viral infections, including the kind carried by cats because of all the nasty poop encounters I've had this summer, gardening in our stray-cat-infested yard. (Oh, those dirty furballs and their nastiness!!! I digress; that is another story for another time.)
From simple Mono virus to Toxoplasmosis, which is a virus found in cat poop, to HIV because I have had blood transfusions before (that one will be negative, I declare in Jesus' name!), I think I set a new personal record for the number of blood vials drawn at the lab - fifteen! I sat and drank two cans of juice before leaving the lab, and oh am I thankful they had juice. It was past lunch time and all I'd had to eat before then was a small bowl of acorn squash and some tea.

So those test results will be trickling in over the next week to ten days, and we'll find out eventually if it was a virus. Post transplant life is never dull :)

No Lymphoma!

Praise Jesus, I do NOT have lymphoma!!!

Hubs and I went to my post-op appointment last Wednesday, and (I just love this doctor!) the first thing that happened when the doctor opened the door was to say, "Well, it's not lymphoma. I just got off the phone with pathology." Way to lead with the good news, Mister! I so appreciated that!

After my appointment, we went home, picked up Victory and my mom, and went out to dinner. One of the best Mexican restaurants in the area has recently started cooking some of their things gluten-free, taking measures to prevent cross contamination and such. (What a nice thing, by the way!) Before my appointment, I'd said, "Let's go to Azteca after we get the good news!" I was doing all I could to walk out the confidence I felt in my heart, and one way was to plan ahead a celebration in anticipation of the great report I was about to get!

Each time I walk through a challenge, a fight of life you could call it, I learn more about who God is and what He wants to be known for in our lives - faithful, ever-present, trustworthy, unconditionally loving, always caring, always having our best in mind... I could go on and on! I walked through this challenge with the most peace and confidence I've ever had through a battle, and God was there on the other side with a great outcome. However, I think it can be a battle in itself to ignore that little voice in the back of our minds that says, "Why are you so confident? What if it turns out to be bad news, and you've been telling everyone you can that you are healthy and God has this covered? What if you look like a fool?" That is really a self-centered train of thought, and if I'm thinking that way, it reveals that I've taken my eyes off of my faithful Father and I'm looking at myself and the people around me for answers.

I love that I was counting on a great report from my great God, and He had the situation covered the whole time, and we were able to go out and enjoy a nice dinner and bask in the relief and peace of knowing I was NOT about to start a crazy barrage of testing, appointments, and treatments. Thank You Jesus!

In case you are wondering why my neck did have an enlarged lymph node, we are still waiting for the full report, but remember those cultures for bacteria and fungus that they started after my surgery (I briefly wrote about it in this post)? At the time of my appointment, only some of those tests had come back (it can take several weeks for anything to grow). Two bacteria had shown up so far. And because I'm allergic to the antibiotic that they usually treat this bacteria with, I am one of the lucky ones (ha) and now have to see an Infectious Disease specialist on Friday to go over the rest of the results and get a specific treatment in place appropriate for someone with an allergy and also immune-suppressed because of a transplant.
My ENT doctor said we are getting oddly close to a scenario out of the TV show "House," because they have no idea why a bacteria would have settled in my neck, and still no clue how I got an infection in the first place. Craziness!

So, it's off to the Infectious Disease department of the hospital on Friday. Hubs and I are going to turn it into a date afternoon, because we'll be going up to Seattle for my appointment. It will be interesting to meet with an ID doctor; I've never been to one before (that's a good thing I suppose!). The other day I was thinking, I should get a checklist of all the different medical specialists and check off which ones I've ever seen  -  I think it would be a good chunk of the list. At least I can't say my life has been boring :)
Here's hoping the infection is mild and taken care of even before I start antibiotics! And also that the antibiotics don't send me into a major UC flare by killing off my good gut bugs! (Gotta stock up on probiotics, that reminds me!)

That's all for now. I have been daydreaming about some recipes to share on the blog but no photos or writeups yet. Stay tuned as it's slowly (stubbornly) changing to fall around here, and I know I'm going to be inspired by the apples and pumpkins all around... Yum!