The Light Is Visible

It just can't be Tuesday already. I've been meaning to blog since last Tuesday. There hasn't been any time during the day or evening to sit down and share all that has been happening. Right now I'll only share the health issues...even though those are the boring things to discuss.

I was so tired from Easter weekend that I really don't think I've recovered. In saying that, I realize it doesn't take much to get me tired. My body is working extremely hard keeping my oxygen levels up and making sure I'm breathing. How God has created our bodies just amazes me.

I saw my Oncologist on Tuesday. She was very pleased with the care I received at UCLA, but wasn't thrilled they wanted to treat me with steroids - especially Predizone. She didn't feel she should have the last word though because she wasn't an expert in treating the lungs. I had told her that I had an appointment with my Pulmonolgist the following day and knew he was going to take all the reports from UCLA and explain what my treatment was going to be. We talked about how difficult the lung biopsy was and she wanted to see what they had done to me. As soon as she looked at the incisions she said one was infected. My response was, "No way!" She got another doctor to look at it who agreed with her. My doctor says my body seems to reject stitches. I think my body is just done with surgeries. She started me on antibiotics. She is also sending me to a Rheumatologist to see why I'm still having so much pain in my hands. Since my time at UCLA I haven't been able to bend my right thumb.

On Wednesday Jim's mom went with me to see my Pulmonolgist in Riverside. His nurses were teasing me that I'm his favorite patient. I'm guessing I'm one of his youngest. He first asked me what I understood about my diagnosis. He then spent an hour and 15 minutes going over all of the test results and doctor reports from UCLA. He explained everything to me. He was concerned because he thought I was going to be upset with him when he told me he didn't want to treat me with Predizone. Upset? I was thrilled!

NO STEROIDS FOR ME!! YAHOO!! I'm just a little excited. No...I'm hugely excited. If that's even a complete sentence?

Right now, the priority is to complete my surgery, heal, and then start on Pulmonary Rehab. What I have (NSIP Fibrosis) will never go away and they can't give me anything to take it away. The easy way to explain it is that I have scar tissue on my lungs. You can't get rid of the scar tissue. The bad part for me is that it's on 50% of both of my lungs. I will be using inhalers to protect my lungs from getting worse and preventing them from getting any infections (if that's possible). My doctor believes that my lung issues are caused by an auto-immune disease (or connective tissue disease) that hasn't manifested itself in any way. He believes it could be another 5 to 10 years before it will. There is nothing that can be done until they know for sure what it is and how it should be treated. Until it does I shouldn't worry about it. I will be monitored every 4 months with my pulmonary function tests and doctor exams.

Of course I do have another issue....it's me we're talking about so I know you're not surprised....and that is my heart rate is extremely high. Way too high. My doctor explained it's how my body is compensating to keep my oxygen level up. I had blood drawn last week to check my thyroid levels and then my doctor will contact my Cardiologist and get his opinion if I should be put on medication. With all my prescriptions I'm well known at our Pharmacy.

So, tomorrow is the big day. My last surgery (as far as I know). I'm only about six months behind in having this expander removed. I'm nervous of course but looking forward to having it done. My surgery is scheduled for 1:00 pm. I was hoping today they would call and tell me it had been rescheduled for earlier. I can't imagine not being able to eat or drink before then. I've never been very good at fasting. I have to be there at 11:30 so maybe I'll just plan on sleeping as long as I can so I don't have to think about it. It will be an outpatient surgery so if all goes well I will be home tomorrow evening. I've already prepared myself that I'll be sleeping in the chair again, but hopefully it won't be for as long as I did before. I've sure enjoyed snuggling in my bed and Jim has learned to share me with a bunch of pillows.

I really feel as if I can see the light at the end of the tunnel - or at the end of this very dark forest. Finally! I'm praying (and hoping you will be too) that everything goes well with the surgery tomorrow. Pray for NO COMPLICATIONS during the surgery, after the surgery or in my healing. My body has been through so much. I used to feel as if I was a really strong person. 18 months and six surgeries later I'm feeling wiped out. Some days I just don't feel like the same person any more. I know she is there somewhere and I can't wait until she emerges again.

I'll have Jim or Katie blog tomorrow night and let you know how I'm doing.

I love you all so much!! Thank you again for all your support.