all ya can do is laugh :)

So, last week, my INR was 1.4 - that's quite low since it's supposed to be 2.5 in a perfect world. It wasn't surprising though because it's been low almost every week. This week though, my body decided to mix things up...

I received a panicked call from Kristy (pulmonologist) during dismissal today. Get this....my INR has spiked to 7.1. Unreal ~ I know! She was so scared for me because I was only at 2.1 when I had serious bloodloss with the nosebleed. She was begging me to be careful and explaining how important it would be to get to the hospital if anything happens. I was listening to her and truly understanding how serious it all was, but at the same time, I couldn't help but laugh inside.  Seriously....from 1.4 to 7.1. I mean it seems like my INR level is trying to beat my hemoglobin level! Geez! If anything my body is interesting.  :)  Sometimes all ya can do is laugh... (and be really careful like the dr said :) )

(I do promise not to use any knives or scissors tonight! haha)

a frustrated doctor & a broken me

I had a gut~wrenching appointment with Dr. Thompson yesterday. I knew it would be a tough one for me, because my breathing has worsened each day since I was released from the hospital. I was dreading the spirometry tests. The techs in his office are so good to me now though. They've finally accepted the fact that I AM trying my best and I probably WON'T provide them with the results they need. (especially on days like this) So, I got through the tests and moved on to the exam room.

Dr. Thompson entered with his head down. He seemed defeated. He started by telling me he wished he had news for me like he'd just given his last patient. (Little does he know, I heard that convo through the wall. They discussed her new cancer diagnosis and a very positive prognosis.) I felt like time stopped. I was sitting in the chair, struggling for each breath, just processing the fact that my doctor just told me he would rather be having a cancer talk with me... 

My lung function was 22%. My eosinophils had spiked to over 1900 again. He said he was at a complete loss. He decided to restart the Churg Strauss treatments again regardless of my hemoglobin level. He said it was too dangerous to risk giving the disease more time to advance to my organs. He also agreed that I can't live in the hospital. He increased my steroids to an obscene amount and added some other meds to try and get me through on my own at home. He didn't even look me in the eyes when I left. He just turned to the door and said, "I'm sorry, Toni. We're doing our best."

I've been pretty numb for a while now. Last week was more of a breakdown due to the pain. Last night though, I broke. To see him feel so defeated was overwhelming. It was like a punch in the stomach. I want to feel good. I want to feel good for real, without pretending. I guess about five months of emotions came flooding forward all at once. I'm exhausted. I don't know how else to fight. I do everything I am supposed to do and it doesn't seem to matter. I guess I just need to take one day at a time and let go. Whatever will be, will be, and I'll be fine.

Introducing Dr. Roberts

Well, the time had come and I had to make the move. Dr. Raghavan just wasn't the right fit. I truly think my case was simply out of her league. I want to believe she had the best intentions, but was simply overwhelmed and didn't know HOW to help me. It was time to move on in order to help myself. Dr. Thompson chose for me this time ~ my new primary care physician is Dr. Shannon Roberts. Here's to hoping for a lasting winner!

I met with her today, and I feel optimistic! In retrospect, my first meeting with Dr. Raghavan was a breath of fresh air because she was so compassionate, sympathetic, and comforting. It was impressive after how I'd been treated by Dr. Caudill. Now that I think back, she didn't provide much more. Dr. Roberts seemed to fill in all the missing pieces. She was compassionate, aware, clearly intelligent, inquisitive, diligent, and proactive. She took the time to read my paperwork and listen to my story. She even developed a "plan of action" in case I have a problem and need her medical attention immediately.

It was only the first meeting, but I'm hoping she lives up to her impressive first impression.

Thankful, So Thankful for Good News!

I know my last post was a tough one, but that's where I was. I was in the midst of intense, unreasonable pain. These are the things I want to remember...the good, the bad, the ugly...because one day I want to look back on ALL the things that worked together to make my simple life glorify God.

Today, I am thankful for good news. The pain from the infection in my arm is less consuming today. The antibiotics are working. This is good. My lab results also came back today. My INR was a bit low, but that was expected after the infusion and other med changes. The amazing stat is my hemoglobin....it's up to a whopping 9.1! Oh yes, that's right ~ NINE point ONE baby!! Still pretty stinking low, but a beautiful number compared to 7. This increase means the infusion could be the answer!

This means today is a very, very good day.

i give

i give
I'm throwing in the white flag to surrender. I like to think one of the things I've had going for me has been my tolerance. I've often told doctors or techs to do what they needed to do because I could get through it. And I did. But now, I think I've met my defeat.

Monday morning my forearm started hurting down from where the IV site had been. It had been fine Sunday when the nurse removed the IV and even before that, so this was new to me. I didn't think much of it though. I just tried to ignore the discomfort and went on with the day. Tuesday morning I woke up and it was quite a bit worse. The tenderness was spreading and more intense. The pain only increased as the day went on. By 3:00 I noticed redness streaking up my arm from the IV site.

By this morning, it was red, swelling, warm to the touch and hurting beyond belief. I asked the school nurse for advice and she practically freaked out on me. She insisted I call my doctor immediately. After a long morning of waiting for the doctor to respond & pretending I was okay, she finally returned my call and told me to hurry over.

She said it's a very bad infection.When she grabbed my arm to examine it, I started throwing up. (what a wimp I am & how embarrassing!) The pain was too much to handle anymore. She gave me a shot and oral antibiotics and wants to look at it again tomorrow with Dr. Thompson. She said she'd talk to him about the possibility of it being an internal staph infection. (but told me not to worry about that ~ so I won't) I can't take any pain meds or ibuprofen, so we're hoping the antibiotics work & kick in quickly.

I left immediately after school and it's taken all my energy to just deal with the pain. I'm completely defeated. It's kinda funny that after everything, it seems an arm infection is going to be my breaking point.....

the "bloody" details

Well Dr. Thompson explained what I'll call "hopeful plan A".... the problem/solution he and Dr. Olson have decided to label me with and treat first in hopes it is the answer to this bloody dilemma. ;)  Sadly, in a nutshell, I predicted the problem (never to this extreme) back on November 8th, before I was released from the hospital for bloodloss. In my very basic understanding of his complex & elaborate explanation it does seem that if "hopeful plan A" works that means a transfusion back then would have prevented all of this.

 Whoa.... that's enough to make me need to catch my breath.

It seems my body was already in such a "deficient and fragile" state that rather than regenerate the red blood cells as it should have ~ it simply chose to shut down. Way to be there for me, Body!! This process continued allowing my systems to wear down more and more as time passed.

The doctors' hope is that if this is the source of the problem, then it is possible that the iron infusions will "jumpstart" those processes again. Dr. Thompson said we should have an idea of whether or not it's working in a week or two. Also, assuming it works, as soon as I get two blood counts going in a positive direction, they are going to reinstate the chemo treatment. This is important because my eosinophil count has spiked again. If it doesn't work, they have other plans to explore.

Sooo, I'm home now~processing things I guess. I've been ordered to stay home tomorrow. I'm feeling pretty exhausted so I know it's for the best & he wanted to limit my germ exposure for another day. I can't help but feel a bit defeated though. I'm missing another day of  MY job - the job I'm contracted to do. I want to believe this is all for good. It would help to believe this is all for good.....

let's make some lemonade

Well it's no secret that I haven't been pleased with the level of care (or lack thereof) that I've been receiving from Dr. Raghavan. It seems that this asthma exacerbation might have come at just the perfect time. It might be serving as the catalyst for getting my healthcare back on track ~ or at least I hope that's what is happening. Dr. Thompson has been so shocked and concerned by my recent labs & the all the things that haven't been done to help me that he has jumped into high gear. He's been consulting with Dr. Olson daily. I actually feel.... like I have a doctor on my side again.

He came in today with a load of information. Basically, it seems he was saying that the lab results showed that my body has stopped making hemoglobin & possibly hematocrit too??? Not sure actually. My hemoglobin was down to 7.8 today. My ferritin (iron level) is very low too. He said they decided the best plan of action to try first is an IV iron infusion...actually one today and one tomorrow. The side effects can be rough (flu-like symptoms, diarrhea, vomiting, nausea, etc). What's new, eh? The good news is that if this works, in three weeks or less I could feel AMAZINGLY better. I should notice more clarity in thinking in a week and start feeling stronger and more energetic within two weeks. Wow! That's an exciting thought! I don't have any details yet on why my body is doing this or is this a forever problem or a forever fix. I just know that my crummy lungs landed me in this place again, but that gave Dr. Thompson and Dr. Olson the chance to work on attacking my blood problem. I'll put this in the positive column for now....


My First IV Iron Infusion



crummy lungs

I tried my best.
 I begged.
I took extra meds.
 I sat still.
I didn't win.

Dr. Thompson & Dr. Olson decided that my respiratory system is too fragile - they couldn't chance waiting any longer. He admitted me to the hospital this afternoon. At least I look good, huh? Wish that applied to my actual health because it doesn't seem to count for much in reality.

They are putting their heads together to solve the low H&H problem. They both had some ideas involving rare genetic solutions that were way over my head. They're doing bloodwork to further investigate possibilities that will lead to getting me back on my treatment. Dr. Thompson has also recommended a new primary  care doctor for me. Her name is Shannon Roberts so I hope that will help my situation as well.

For now though, I'm here again, giving my crummy lungs the chance to recover with high doses of IV meds. I really just need to figure out how to get all this equipment in my house and do this stuff on my own. It would be so much more convenient...