transfusion confusion

This is one of the many times that my own medical degree would truly be beneficial. Needing several specialists comes with the problem of dealing with their differing opinions. What's okay... what's not so okay? What can we blow off for now? What should we really worry about and act on immediately? I'm left in the middle trying to decipher the medical lingo and make the best decision for myself. Lately, I find myself confused and wondering who to trust.

This transfusion situation has become a perfect example. I don't know what to think anymore. I rushed back to town for labs and my appointment with Dr. Neal on Tuesday. He voiced serious concern about my H&H levels and stated he will not feel comfortable reinstating the treatments until my hemoglobin is stable at 11. When I left his office, the PA, Sarah, from Dr. Raghavan's office called. (Dr. Raghavan was on vacation). She said my lab results were in and my hemoglobin was 8.4. She was calling the infusion center to schedule my transfusion for Wednesday morning.

When she hung up, I sat in the parking lot frozen for a moment. A transfusion... a rush came over me. I felt lost, overwhelmed, and completely alone. Is this something I could do alone? I wasn't sure. I would have to though. And it seemed like the right answer...finally. Maybe it would give my body what it's been needing to recover. Maybe I would finally start to feel stronger ~ not so dizzy. Somehow from there, I put the keys in the ignition and moved on with my day as if nothing was different. Sometimes you just pick yourself up and move forward... alone or not.

It turned out, being alone didn't matter. My hemoglobin was a tad lower this morning. When they touched base with Dr. Raghavan before starting the transfusion, she cancelled it. Yes, that's what I said, cancelled it. The tech was befuddled and so was I. She said she'd decided to have me try iron tablets instead. At this point, I don't know what else to do but just move forward. I can't change a doctor's orders. Maybe the iron tablets will be the silver bullet - who knows?

Well, I guess they won't. I just left Walgreens where the pharmacist told me I should take iron at the same time I take coumadin because it will bond with it. It will also interact with some of my other meds. He highly recommended that I NOT take the iron tablets, but that I talk with my doctor immediately.

Seriously? That was enough for me. No thanks! I'm over it. I'm not calling another doctor's office to beg someone to listen to me relay crucial information about my health. Forget it. I'm just not going to do anything. Surely one day soon, one of my doctors will figure out the right way to help me. Until then, I'm out.

more news

I'm getting to the point where I'm starting to worry about myself a little. Looking back, I can see that I've been disconnecting in a way, little by little over the past few months. I guess it's been my way of dealing. I've been trying this and that for any type of escape. I've been numb to emotions yet feel like my heart is constantly crumbling at the same time. I think I could easily spiral out of control. I don't know how much more I can handle and I'm not sure if I really believe anymore. I want to & I think I still can...I'm just not sure.

Dr. Neal's nurse called Tuesday about my labs that were drawn Monday. My H&H level is down to 8.4. He is extremely concerned. He said I needed to get into my PCP immediately to have it addressed.

Well, I called Dr. Raghavan & saw her today. She was more baffled by the labs. She seemed to be at a loss for what to do. She kept asking me what Dr. Olson would do. Well, I don't know because this has never happened before when I've been with Dr. Olson! She did diagnose me with bronchitis & a sinus infection, but couldn't figure out what to do about the mysterious blood loss. I finally told her I needed to be somewhere and she said to just return next week to have the levels checked again. If they are still low, she wants to do a transfusion.

I can't begin to recount the thoughts that flooded my head as I drove away. Talk about being baffled! Just then, the phone rang and it was Kaci, calling for Dr. Olson. She had also received a copy of the labs and was quite concerned. I told her what my doctors were doing (or not doing). She insisted I stop taking my treatment medicine because it could be the source of the problem. She said she would call my PCP and share her thoughts. I am supposed to go back on Tuesday for more labs.

I don't want to process all the what ifs of this situation. I just know that this treatment was supposed to be my answer. At the time, there wasn't another option. I don't want to face the thought of not being able to have this treatment...

and then the phone rang

Today was kind of a tough day because I didn't feel well. I seemed to worsen as the day went on with aches and chills. By mid afternoon I had a full blown 102 degree fever. Nice timing ~ just two more days until winter break and I wasn't going to make it. My body has such a way of making me feel like a complete failure over and over again. I just want to go to work and do my job....it sounds so simple, but I'm having such a hard time with it this year. :( 

I was fighting the fever with Tylenol and rest when the phone rang. It was my scheduler Jennifer from National Jewish. She surprised me by saying Dr. Olson wants me back in Denver in January. I was feeling a bit out of it so I asked her to clarify ~ I was hearing her correctly. Dr. Olson has been concerned about my labs & the direction of my care and wants me back at National Jewish for a follow up with all seven of my specialists. The scheduling of that many doctors was a challenge for Jennifer, so the trip isn't actually going to happen until the week of February 20th.

I just hung up the phone moments ago and I feel frozen....numb....paralyzed even. I'm not ready to deal with the decisions that accompany a medical trip again so soon. I think I'm going to deal with it by not dealing with it for now. I'm just going to keep this phone call to myself for a while. I don't want to lie to anyone, but I just can't deal with travel drama right now...

I'm alright...

That's my new default answer. People were getting upset with "I'm fine" so I had to find a new line..."I'm alright" seems to be my new go to phrase. The thing is, it's actually true sometimes, so I don't feel so bad saying it. The funny thing is that most people think I'm doing GREAT because I can totally pull off the "look" no longer than I'm at work. That's a good thing because people have worried about me way too much.

Tomorrow will mark the fourth week of my Churg Strauss treatment. My dosage has been doubled once already. Hopefully it won't need to be increased again. I'm due for labs mid week to make sure my body is tolerating it "properly". The side effects haven't exactly been fun. It seems to average out that I spend every other day throwing up ~ so I suppose I should be thankful it's not every single day.

The treatment is completely destroying my INR level as expected. My doctor has continued to increase my coumadin dosage but my INR still isn't stable. I'm having it checked again tomorrow. It seems like it is higher now because I smashed my finger today and it bled endlessly from beneath the nail. It sounds crazy, but I hope that is a sign that my level is closer 2.5!

Finally, I guess I should talk about strength & work. :( I wasn't cleared to go back to work full time, so I'm still working half days. Today was the first day of my third week back. I've tried to pretend like I'm loving it. I thought it would get better. I'm hoping the problem is that I'm just working mornings and sharing my job with a sub. It's time to be honest with myself though, I'm hating it. I'm absolutely hating it. I've never hated my job so much. I feel completely lost ~ out of the loop. I have no idea what's going on after I'm gone. I missed so much while I was gone. I don't feel part of things at all anymore. I feel completely disconnected. I missed too much and I can't get it back. I can't make it up. I also don't feel good half the time I'm at work. I am so sick of pretending that I feel great. I'm exhausted by 9:00 a.m. Some days are certainly better than others but I can't go on like this. I want to love my job again.

I'm just tired and ready for the fight to be over. I want my life back.