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.

Anorexia

I have to say, I've had enough of this! I am NOT anorexic and anyone who knows me and truly knows what I've been going through can back me up on this. It is beyond my understanding how a doctor can sit in the room with me and talk to me about how my new treatment will cause vomiting and severe nausea and in the next breath threaten to send me to a nutritionist if I don't gain weight?!?! Are you kidding me? My weight is the least of my worries right now! At least it's stable now and I'm not losing any more. Geez, I think I have enough to deal with without having my doctors threaten me. Way to add some more stress to my life MDs!

More time

I know I get frustrated with my body. I want to recover immediately and just get back to normal. I have to admit that as slow as my progress has been, I am noticing progress. For example, I am stronger in the mornings now. I actually have a little stamina to do a few things in the morning before I start getting dizzy and feel completely drained for the day. That ~ I am calling a win!! Put it in the victory column. I'm taking what I can get for now! I'm finally wrapping my head around what I've been through this round. I guess it makes sense I'm having a tougher time with the ole bounce back. I'm starting to see the light though, and that helps. That really helps.

I just returned from my appointment and it wasn't great, but it wasn't terrible. The good news is that Dr. Raghavan actually talked to Dr. Olson while I was there! Yay for another victory! Why was that so hard? They are on the same page now and we have a plan! My H&H is slowing creeping up. I'm in the double digits now at 10. My INR was a low 1.4 (it should be around 2.5). She increased my coumadin dosage but cautioned me to be extra careful since I seem to be a bleeder at lower levels. They also decided to go ahead and start my Churg Strauss treatment. It's the chemo drug we've been waiting & waiting to start. I'm not allowed to go back to work for two more weeks. After that I'll be trying half days and easing back in to the routine. Both doctors thought this is the perfect time to go ahead and test the side effects and impact of this drug before I'm back at work. They also agreed that it's crucial to get me off the steroids as soon as possible too. This treatment will hopefully replace steroids! Whoo hoo! Sooo, tomorrow, with Zofran (nausea meds) on hand, I am starting my new treatment. Let's see what this body is ready to handle?! I know this medicine is going to be the ultimate answer ~ my body just needs to find the strength to handle it...

still hanging on

Yesterday I basically went through the motions of the day. I still felt the same as before, but was relieved to be home. I tried to get an appointment with Dr. Raghavan, but there were no openings. I had to settle for waiting until today. I actually thought that could be a good thing because it would give her time to talk with Dr. Olson so she'd be prepared to see me today.

I arrived at the appointment feeling very unsteady, most likely from the activity of bustling about. I was there from 9:30-12:50. Most of the time was spent waiting. Sadly, it was a very frustrating visit. Dr. Olson had called her, but she had not taken the time to call her back yet so she didn't have a plan for me. My H&H level was still very low and she didn't check my INR level. She said she wasn't sure why they hadn't given me a transfusion in the hospital, but that's all she said about it?? She ordered labs which took the nurses seven painful tries to find success. She also told me to go ahead and start the coumadin again on my regular dosage and return Tuesday for more labs. She said she'd call Dr. Olson as soon as these labs were back. Before I left, she told me I could go back to work by mid next week if my labs were good and I showed a great deal of improvement.

I left the appointment in a state of confusion. I want to go back to work more than anyone, but WHAT?? I'm in worst shape now than I was ten days ago when they said my immune system wouldn't be able to handle fighting the slightest bug. Is she just throwing her hands in the air and giving in? I felt like everything she did today was just a blind motion. And, as far as the coumadin goes, her advice was the exact opposite of Dr. Olson's. It's like she didn't even look at the whole picture of me and everything that's going on for my well being. I refuse to take a chance at repeating last weekend and I trust Dr. Olson's advice lightyears more. So, I'm going to hold off on the coumadin until Sunday night. My H&H level is too low to start it today. I'm also going to insist that Dr. Raghavan call her at my appointment Tuesday if she hasn't yet. This just can't continue. If she is going to be my doctor, she is going to have to take care of me and be invested in my treatment. I can't do this on my on much longer. I need help getting better. I deserve to be better.

Just Let Me Go Then

I had a lot of time through the night to think things through. I needed to fight to be treated. The night before I had talked Dr. Phillips into stopping the fluids because of the swelling. She just did it!?!? It really bothers me when my doctor allows me to be the doctor. The ENT didn't even show up to check on me like he'd promised. I also still hadn't heard a thing from Dr. Olson which made no sense if Dr. Raghavan had truly called her. So that was it, I had to fight for myself.

I called National Jewish and talked with a nurse as soon as they opened. She was very concerned about my situation. She said she'd expedite the message and try to get Dr. Olson or Dr. Fenster to call me as soon as possible.

About an hour later, Dr. Phillips' PA entered the room. She mentioned that my BP had dropped significantly since yesterday. She asked me if they sent me home, did I think I could be careful and not pass out or get back to the hospital if I did. I just stared at her. She asked if I wanted to go home. I said yes and she bounced away. Seriously....

I wasn't feeling so good, so I rested and distracted myself with texts from friends until Dr. Phillips entered the room. She said, "I heard you're a 2nd grade teacher! How awesome! I have three third graders. You're such a good patient, sooooo, I'm just gonna send ya on home. I just need to find out what the ENT is going to do. Okay!" I just stared at her. I couldn't form the words to fight for myself. She's a total dingbat. Just then the PA popped in the door and said the ENT would see me in his office in the morning to remove the packing. Dr. Phillips looked at me and said, "Super! Bye then." and bopped out of the room. Are you kidding me? I just sat for minutes in shock and then crawled back under the covers.

I decided tomorrow wasn't acceptable for an ENT visit. He had said Wednesday and I was determined to hold at least one doctor accountable. I called the office and after much perseverence I finally won a battle. The triage nurse said he would come to my room to see me before I left the hospital.

In the midst of fighting for the ENT to visit, National Jewish called back. I was hoping to answer to the sound of Dr. Olson's voice, but it was Marsha, the nurse. She said Dr. Olson was very concerned and wanted my doctor's phone number so she could talk to her as soon as possible to help me. (insert near meltdown here) I tried to explain to her that my doctor is a hospitalist and was gone. She had just left an hour before to start the discharge paperwork. There was no phone number or way to contact her (I learned that 1st hand trying to contact Dr. Woody earlier this year). I asked Marsha what advice Dr. Olson had for me and she had no clue. I was so close to help yet it was completely out of reach. I reluctantly hung up the phone.

The ENT removed the packing which did cause some slow bleeding again. He didn't seem to notice (because he didn't even check). I signed my paperwork and left. Back home, still dizzy with blood trickling from my nose, I sat on the couch trying to figure out what had happened. My phone rang and it was Dr. Olson. In a nutshell, no doctor had contacted her. She was extremely concerned. She gave me her pager number and insisted I give it to doctors for now on so they have no excuse for contacting her. She wanted me back at the hospital if the bleeding didn't stop within the hour (but it has). She's going to call Dr. Raghavan herself tomorrow to help her with the detailed plan for me.

Stacey is staying over tonight just in case something happens. All I want to do now is crawl into my bed and believe that change is around the corner.

dangling

Today I'm really starting to second guess everything. What am I doing here if these doctors aren't going to treat me? Why won't they treat me? What's going on? Why haven't I heard from Dr. Olson or Dr. Raghavan? Why are the nurses the only ones who seem concerned about me getting better & not just surviving? My gosh this is simply unbelievable!

My H&H level has dropped a tiny bit again. Today it is 8.0. I guess I'm officially surviving on half the amount of blood that should be pumping through my veins right now. That should explain why I feel so crummy. I've also started swelling even more than yesterday, actually a lot more. My hands and arms are now at least twice their normal size. The nurse said it's from the high rate that they're pushing the fluids. She's keeping a close watch on my lungs to make sure it doesn't lead to other problems.

I'm at the point now where I just want out of here. If they're not going to help me get better, then I'd so much rather be home. The thing is, I've started thinking about the long term effects of this setback. If they don't give me the transfusion I need to get me back on my feet and help my body to recuperate, how much harder will it be for me to get back on my own. I mean, let's face it, it's not like I was on the fast track to recovery before this bump. My body is struggling to fight. I don't need any additional obstacles. I want to work in December. If treating me now would make that possible, I need to fight for it. The thing is, I'm exhausted.... and feeling so defeated. It's clear that these doctors are clueless and apparently scared or unwilling to do more than bandaid me. I need help and I don't know how to get it. I am here, in the hospital, just trying to hold on. How do I fight through this.

still here, still losing blood

Sunday was another rough day. Dr. Phillips let me know that the ENT would not be checking in on me until Monday. I was getting an overwhelming vibe from her that she had no clue or confidence in how to treat me. Actually, it seemed like she was almost scared of treating me. I started feeling like I was just dangling in the hospital...just hanging on by a thread. So much pressure was building in my head from the blood. My ears had even started hurting. My blood pressure had continued to drop so they had started a bolus of fluids which means pumping the IV fluids at a very fast rate in back to back bags. I was feeling even more detached and nauseaous. The room was spinning constantly. What was going on with my body? How was this going to get better?

Today, I found out that my H&H level has dropped to 8.1. The nurse said she was almost positive I would need a blood transfusion today. That's huge. A blood transfusion? You can't just blow that off. Why is this happening? Why can't I fight anymore? It's not like I'm not trying...not doing all I can to will myself better. I was planning to call Dr. Olson for help because something had to be done. When Debbie came by to visit though, she confessed to calling Dr. Raghavan on her own. I have to admit I was ...... a bit annoyed and frustrated, but it was already done. I know she did it because she cares, but I honestly felt like she overstepped & felt powerless. She told me Dr. Raghavan was going to call Dr. Olson today so I felt like I could not call her myself. I didn't want multiple messages flowing into Dr. Olson today confusing my already complicated care. I didn't really know what Debbie and Dr. Raghavan had discussed so I didn't want to further confuse things. I decided to wait and let Dr. Raghavan call. Dr. Olson is so good, I knew I'd probably hear from her tonight or tomorrow after the two doctors talk.

That night, the ENT finally came and removed the Rhino Rockets. It was a very painful procedure. He discussed the options and I finally gave in to another form of packing to replace the Rhino Rocket. I was still bleeding and losing blood so something had to be done. He said he would check on me Tuesday and remove the new packing on Wednesday. I have decided that Dr. Phillips is useless. She refuses to make any decisions at all. She asked me if I want a blood transfusion. I was shocked. I told her I couldn't make that decision and she said "okay then we'll see what your level is tomorrow. It's dangerously low, but we'll keep pumping you with fluids for now to keep your BP from dropping too low."

Oh my gosh!

a bloody freak show

I had a very restless night of sleep (which isn't unusual). At four a.m. I felt blood begin to rush from my nose again. I sprinted to the bathroom. Thankfully it stopped after about three minutes. I felt so relieved. My head was still throbbing and I felt a bit nauseous. I climbed back in bed. Within minutes, the bleeding started again. This time it took about ten minutes to stop, but it stopped. I went back to bed with a towel and elevated my pillows hoping to prevent more bleeding. Just as I started to relax, thinking it was over, the blood started gushing like an absolute freak show. I rushed back to the bathroom where I remained for the rest of the morning. Nothing I tried would stop the bleeding. At seven a.m., I called Dr. Raghavan's service and the on-call doctor insisted I have someone drive me to the ER immediately to have my INR checked. I knew Stacey would be awake so I texted her for a ride.

The bleeding was still gushing non-stop at 9 a.m. when we headed to Baptist Urgent Care in Brannon. At that point, I knew things weren't good. What was wrong with my body? Why can't I just get back to normal?

The kind nurse tried and tried to check my INR with the finger prick, but ironically couldn't get enough blood from my fingers. Ha! She finally got a reading of 2.1. It made no sense! My INR is not off the charts for being too thin and I'm bleeding out like this? This is not how it's supposed to happen according to the official coumadin side effects!!! She also checked my H&H level which is your hemoglobin or the amount of blood in your body. It should be between 14 & 16. Mine was reading at 13.6 so bloodloss was not a huge concern yet.

The doctor explained that the only option was to insert something called Rhino Rockets into my nose to stop the bleeding. The process was wretched. As soon as they were inserted the blood poured more heavily from my mouth. Seconds later it had saturated the Rhino Rocket and was bleeding through it. While the doctor was trying to decide what to do with me, I nearly passed out. I completely passed out minutes later. When I came to, I could see the fear in Stacey's eyes. I knew things were pretty bad and hated putting her through this. The doctor had decided that with my dropping blood pressure, and all other things combined, she had to send me on to the ER by ambulance. I was devastated.

By the time I arrived at the hospital, the bleeding had slowed. I was feeling pretty rough...almost detached from myself actually. It was like I was watching everything in a fog or slow motion. They kept me in the ER for a long time on fluids watching my BP before Dr. Spanier finally decided it was too dangerous to let me go home. He admitted me to the care of Dr. Phillips, one of the hospitalists.

I was up in a room on fifth main by five o'clock that evening. I was still bleeding and in quite a bit of pain. They offered an assortment of pain meds but I declined. I just couldn't deal with the extreme itching reaction I have to pain meds on top of how I was feeling. I could get through this. Dr. Spanier had said I would just need to stay overnight for observation, see the ENT, and I would be on my way home. Dr. Phillips stopped in to introduce herself. She seemed a bit flighty and uncertain about a plan for my treatment. I am sure she just hasn't had a chance to review my chart. She said she'll return tomorrow and isn't certain when the ENT will see me.

Oh, I am so confused and tired and just can't deal with doctors that don't know me now. I'm going to believe that today was just a really rough day and tomorrow it will all be better.

I think I hate eating

I really thought the whole nutrition thing was improving...and I guess it is, but it's just a tough process. I am finally starting to get an appetite for actual food, not just snacks, but food. The problem is that I still feel sick every time I eat. I'm following orders and trying to eat regardless of how it makes me feel.

Today, my body retaliated. After eating only a few bites I stopped because I was feeling sick. Moments later I was in the bathroom throwing up. I suppose my body thought that wasn't enough because in the midst of that sickness blood started gushing from my nose and mouth. I've never had a nose bleed in my life. My stomach finally settled, but the gushing blood did not. It bled non-stop for fifty minutes (post stomach upset). I don't know much about nose bleeds, but I do know this isn't exactly normal. Now that it has stopped my head is hurting terribly. I feel like this could/must be related to my coumadin and INR level. Of course now it's Friday evening and the doctor's office is closed. I'm feeling kind of weak and tired so I'm just going to take it easy and hope this was a one time thing. All I can say for now is that I hate eating!

Bummed in Lexington

I had my follow up appointment with Dr. Raghavan today (my PCP).  I feel confident that she is a great doctor and truly wants what is best for me. She seems more than willing to work with Dr. Olson as well as the other specialists here in Lexington. I feel good about her taking the lead with my care here.

When she entered the room, she let me know she spent the previous night updating herself with my case and was very concerned about me. She reviewed her plan for stabilizing my coumadin level and explained the complications specific to my health conditions. Her hope is that eventually I'll be able to reduce the INR testing to bi-weekly, but she said for now it will likely need to be every three days.

When I asked her about getting back to work, she was very hesitant. She had me walk around the office on a pulse ox machine. My O2 dropped to 91% & my HR spiked. She said this combined with my weak system, and unstable coumadin level & nutrition just made it too dangerous for me to return to work yet. She said I need to stay out all next week too and return to her on Friday for more tests. She explained that if I even catch something as simple as a cold now, my body simply won't be capable of fighting it at all. I have to admit, I was crushed. I really feel better and stronger. I'm ready for things to get back to normal.

In the end, she let me know she would be calling Dr. Olson again to talk more in depth about her plan for me. She also told me that my focus for the next ten days is to be on nutrition. She said she wants me to let her worry about everything else medical and me to focus on trying to eat and rest so my body will begin to rebuild strength.

So, here I am, back home in Lexington, completely bummed. I almost feel farther from friends and family now than I did in the hospital. I'm so happy to be home, but I just want things to get back to normal. It's like it is just out of my reach and there is nothing I can do. I'm so tired of having no control over this frustrating body of mine.

I get the prize :-/

I know I'm a stubborn person. I like to think it's a quality that has helped me survive in some ways. I know it can also be a bad quality though. Sometimes when doctors say things to me, it takes a while for it to hit home. Sometimes it's so overwhelming, I don't even know how to process it. Dr. Huie slammed me today with a pretty severe statement...

"I am the worst (most severe) asthmatic he, Dr. Olson, & National Jewish have ever treated."

...this from the top lung doctors in the nation's top lung institute.

...this is an overwhelming thing to hear, especially for someone who likes to pretend everything is "okay"...

Okay, whoa, okay, but, whoa...

Thursday was a slow day, but overall good. My lungs started improving again. Dr. Cosgrove felt confident about staying on course with the steroid taper. I was still reactive and sensitive, but he expected that. My INR blood level dropped a tad, but he felt like an increase in the coumadin and one Lovenox shot would get it back on course. There was a chance I could be released Friday.

During the night, I started feeling more pain and irritation from my IV site. It had become infected. :(  It made me sick to think I had to go through getting yet another new IV.

Dr. Cosgrove spent a lot of time with us today. He cancelled the laryngoscopy because he was concerned my airways are still too sensitive. He said they can order it in a few weeks if my doctors back home feel it is necessary. The good news... no awesome news is that he said he is ready to release me tomorrow morning. He said it is the right time to send me back home and transfer care outside of the hospital. The, eh, other, news is that my INR level dropped even more. I need more Lovenox shots and a higher dose of coumadin to be in the "safe" zone. That means my parents are going to need to administer the shots over the course of the weekend drive home. OMG!! Dr. Cosgrove's concern was that the nurses have been having trouble safely administering the shot to me due to malnutrition. My parents will be trained in the morning by one of the best nurses. Dr. Cosgrove is also prescribing some numbing cream that is typically used for ports in cancer patients. He said it should make a difference in the pain. (Oh I hope so). I will need to get to the doctor in Lexington, Monday morning for an INR level to decide the next step.

My head is spinning with information, hesitation, excitement, uncertainty, exhaustion...  I can't wait to be home. I want to see my home, my friends, my dog, my bed, my yard, my little classroom, my students, my family.  I wish I could blink myself there - avoid the added exhaustion of the 1300 mile drive. I can't though. Once again, I must take my victory and run with it. I am going to go to sleep on this last night at Rose Medical Center, so thankful for all they have done, and let go of the things I cannot change. Tomorrow morning Dr. Huie will be back to fill in the rest of the blanks about my immediate plan. The plan that is All for Good...

Stand By Me

All for Good ~ I really do believe that. It wouldn't be the title of the blog if I didn't. One good that has come from this tough month is that I think I've had a chance to learn more about myself. I've also learned more about my friends and family.  I've really never been the type of person to expect things from people, but certainly am appreciative. I also don't thrive on attention, but like anyone, I need support. My eyes have been opened by the friends who have stood by me this month. I am truly blessed and know that I wouldn't have made it through without their endless encouragement. I am better because of these new wonderful people in my life!

Baby Steps

If there is one thing for sure, I can say that the professionals that work here at Rose Medical Center and National Jewish are true professionals in their fields. They are concerned about my COMPLETE well being not just the aspect that is most critical at the moment. This is just another reason I know I'm in the right place. With everything that is going on, dealing with food seems like another impossible mountain to climb. Yesterday was a good day though, for the first time in ages, I actually craved something! It was rice, which is too low calorie according to my nutritionist, but nonetheless ~ I wanted it and ate it! Yay for positives ~ let's add one to the victory column!

Dr. Cosgrove tapered my solu-medrol back to 12 hour doses last night. Another victory! The basic plan was that if my system held strong, he would switch to oral steroids by Thursday and I could be released by Friday. Mom and Dad were giddy with the idea of hitting the road. They immediately began dialing numbers to spread the news when the doctor left the room. With this plan in place, I didn't get my 6:00 p.m. treatment and my family left the hospital with high hopes of heading home soon.

Overnight, I could feel my newfound "ease" to breathe was slipping away a little. I rested on my bed watching the beautiful snow fall just praying my lungs would rally. All day I knew I was a bit worse, but it was minimal enough that I was able to play it off. I'm so tired of being a disappointment to my family. They are so ready to go home. I'm trying so hard to stay positive and focused but it's so hard when I'm not the only one being impacted.

Anyhow, when Dr. Cosgrove visited today, I was very quiet. I assured him that I was okay. He agreed to taper the solu-medrol again but with a big warning. He said that he and Dr. Olson spoke today. They both believe that my health is in such a reactive and critical state that if I spiral again soon, the outcome will be much worse than this time. To top it off, he also noted that my INR labwork dropped and if an increase in the coumadin doesn't get it back on course, I'll need to go back on the Lovenox shots. Deep breath, (well, mentally anyway).

About an hour after Dr. Cosgrove left, Dad and I decided to go for a walk around the hospital to look at the snow out the windows. As I was walking, an outside door opened and the cold air snatched my breath away. We turned down a long hallway with an odd smell. It happened so quickly there was nothing I could do. I could barely breathe. I had a lost a weeks worth of progress. I was calm of course, trying not to let Dad know how bad it was, but he could tell. Dr. Cosgrove has cautiously decided to monitor me through the night on the current plan to see if I might improve without increasing the treatment again. At last check my O2 was down to 93% on room air. It's been holding strong at 97% for a week now.

I guess this is truly what you'd call baby steps in progress. I'm surprised to admit that I'm not feeling defeated right now. It's odd. Honestly, I feel a bit numb tonight. And maybe that in itself is a gift.

A Silver Lining

Here are a few day brighteners and random pics from my stay at Rose Medical Center...

Happiness from Jackson (yes, Jackson via Bub & Melodie!)

Sunrise from my hospital window.

Dusk from my hospital window.

Posters sending love from 2nd grade!

More posters & cards adorning my beautiful room.

Even more cards, posters, and love sent from home!

Gorgeous and aromatic flowers from amazing friends from school!



Midday view from my room.







A gift from Denver to me ~ S N O W !!!!

 









A Sincere Consultation

This was a very long Monday. Debbie and Melodie were winding down to fly home and Mom and Dad were clearly hitting a wall of stress and exhaustion. So much was in the air but not being said.

The good news was that I actually had some air movement in my lungs, but I was having a harder time fighting the effects of the treatments. I fell asleep for part of the late morning while my visitors patiently watched time pass.

Dr. Cosgrove entered the room around 3:00 and stayed to talk with us for an inordinate amount of time. He was thorough, sincere, and resolved. He explained once again the serious nature of my condition and how they are dedicated to me and only what is best for me specifically, regardless of what it talks. He discussed the complexity of my rare conditions and why that has made treatment, diagnosis, care and improvement so difficult. He immediately made it clear that I am no challenge they are ever going to walk away from. He wants me to believe that even though it will be tough, he and Dr. Olson are determined to help me to better days. A lot will need to change. He relayed that it will be more difficult for (even me) to push through. I will also be on a very intense schedule with the doctor to monitor everything about every treatment and how they are interacting with one another. It will be a long road, but they believe there is hope. Right now, the things that are working against me are all things he and Dr. Olson are trying to find alternatives for so I can regain strength .... and fight again.

This has been a lot to take in, and of course I'm recounting it all in a vague overview. It's just so blurry, so hard to absorb. I am believing that things were revealed here all in part of God's great plan of good for me. He had to know that this is where true action would be taken and His plan would follow course. So once again, as tough and painful as things are now, more than ever I have to find a way to focus on the ultimate good of His plan.

Speaking of ill effects and the way my body is reacting to the treatments, this evening was pretty rough. My veins are taking a true beating from the IV meds and unfortunately they weren't the strongest blood pumpers in the first place. My IV site gave out this afternoon and had to be changed before my next treatment. It didn't go near as smoothly as last time. It took eight tries, three specialists, and a vein ultrasound to finally get a successful new IV started. With each careful try, the vein would blow with more intense pain than the one before. With a disappointed look, the IV nurse told Mom after landing the "successful" site that it would not likely last long. It has made it through the first few treatments, but constantly aches. Once again, I have to shift my focus, I have to look at what is good and what is coming. I can handle this, I am stronger than this pain. I am alive and I am on course for better days.

Watching the sands pass through the hour glass

Little has really changed since I wrote Thursday evening. My overall well-being has diminished to some extent each day because of the toll the powerful treatments are taking on my weak system. It's all been making me feel pretty rough overall. I barely have a voice and feel quite weak and achy. I've still been fighting to breathe, but the huge increase in solu-medrol is making a big difference. I guess the worse part, besides how I'm feeling is the pain from the Lovenox shots. The full dose is significantly more painful than the minimal dose I've been on. They say it will only be a few more days though...I can push through for that...I can.

Friday afternoon, Dr. Olson stopped in to visit me. It was unlike any encournter we've had. She was so serious and resolved. She explained that my health in a pretty serious condition and she won't allow me to leave her care until I am in a much safer state. She's on vacation beginning this weekend, but said that she'd still be in town for the first part of next week. If I am out of the hospital by then, she said she'd come in to see me again before I head home, if it's not until later in the week, she would leave all the information for Dr. Cosgrove, her ILD partner to meet with me. Right now, she and Dr. Katial are working on the plan for my course of treatment. The immediate concern is to get the treatment for the pulmonary embolism on track. After that it would be imperative to follow suit with aspirin desensitization, treatment for Churg Strauss and everything else.

She also made it clear that Dr. Thompson is not the safe way to go any longer for my "go to" doctor. He just isn't available or reliable enough. She recommended that she speak with Dr. Raghavan and get her on board with the treatment plan. My immediate needs will require visiting the doctor bi-weekly for labwork, well checks, and weigh ins. As far as work, she said that would depend on how my body fights and handles all the combined treatments in connection to the germy school environment. That's something I just won't allow myself to process for now...

So, for the time being, I've been fighting with everything in me to stay strong, as strong as I can. Because this is harder than anything I honestly ever thought I was going to face on this trip to Denver. I am so blessed though, because, Melodie, Debbie, and Katie just popped in like sunbeams this weekend. They decorated my hospital room with cards from school and their bright smiles. They filled the silence with hilarious stories even when I couldn't laugh. Katie read blurbs from the paper and they brought nutty stories from the hallway when my walking privileges were taken away because I was getting worse. It was a gift I'll never be able to repay or explain, but I will NEVER forget a second of the time they gave to me.

The high doses have begun to pay off. My breathing is finally improving again. Dr. Wells dropped by today and said they are dropping the solu-medrol again to see how I react. He even gave me permission to spend a little time outside on a bench in the beautiful Denver sunshine! What a treat after this long week inside! My ECHO is now scheduled for tomorrow morning to check for eosinophils in my heart. The other big focus as I mentioned is nutrition. They are attacking me with every supplement and calorie possible at this point. It's practically humorous how often the nutrition people come into my room now to bring trays of this or that. I'm doing all I can to try to eat, but it feels like such a monstrous mission.

Anyhow, the weekend is coming to a close and it's almost time for another round of treatments. I don't know what tomorrow will bring as far as how I'll feel, or test results, or even a new outline for my week. All I know is that this is where I am now, and I am making it ~ I really am making it.  More than just making it, I am going to beat this!

What will I see when I look back?

Tonight, I'm sitting here, trying to recap and detach simultaneously ~ a bizarre combination, but precisely the typical me thing to do. I'm wondering what I will see years down the road when I read back through this. How strong is my body and how much can it take? How will I feel about how I dealt with the hand I've been given?

Yesterday, when Dr. Huie visited, a bit more time turned into 2-4 more days. I was very concerned about the impact that would have on Mom and Dad, but otherwise felt I took it well. I miss home terribly. I know I must continue to focus on my purpose for being here - treatment from the best....treatment from the doctor and team that will NOT give up. I must believe that this is still all for good and when I'm not strong enough hundreds of others are being strong for me by the grace of God.

Today, on a bright note, dear friends arrived to visit from home! What a beautiful sight! Melodie and Debbie flew in just to be with me! Words will never express my humble appreciation for their friendship!

They arrived in time to witness the team of doctors come into my room for midday rounds. Dr. Huie took the lead this time. He was a bit more intense than before. He was concerned about my lack of improvement and diminishing lung function even on the meds. He ordered a high resolution chest CT and reminded me he was constantly talking with Dr. Olson.

After lunch, Dr. Dallas Dunn, a resident entered the room to share the CT results. He said they found a pulmonary embolism (a blood clot) in the upper right lobe of my lung. It was likely part of the explanation for my lack of improvement. It was good that they found it and something that must be acted upon immediately. They would be ordering more tests and Dr. Huie would be in to speak with me.

I was taken down for leg ultrasounds, had a labs drawn, and as if on cue, Dr. Huie walked in. He explained that he is concerned about my overall condition and he and Dr. Olson are taking every measure to care for me. To treat the blood clot, the plan is to start with a higher dose of two Lovenox shots daily and coumadin. The treatment will likely last about six months. They will constantly monitor me and make adjustments as needed. Treatment will be able to be outpatient as soon as they get the levels under control. They also feel confident that I'll be able to undergo my treatment for Churg Strauss at the same time.

What a load to take in... a pulmonary embolism... in my lung? More painful lovenox shots? Sometimes I... I just don't know... how to process what's going on or what I'm being told. I just feel like I have to take it in and go with it. Trust that this is all part of the plan and somehow, I'll be able to handle it. Somehow, I will...

As the evening was coming to a close, my night nurse, Christy came in to check on me and noticed I was bleeding out from my IV site. It had been hurting more and more all week, but today has definitely been the worst. She looked at my arms and like a true hero, didn't even try to redo it on her own, she sent in the Charge Nurse who is apparently an IV champion. Removing the old IV was actually more painful than starting the new one. As soon as it was in, she gave me my first full dose of Lovenox, which nearly sent me over the edge. Melodie and Debbie did their thing to fill the room with crazy stories of total nonsense. I had a few bites of roasted tomato soup hand delivered by them from the Madison Street Cafe (a new Denver fave) and they headed off to their hotel room.

What will I see when I look back? I want to believe that I will see the real me... living my life and not letting my circumstances rule me. I hope I will see someone I am proud to look back on....

Continuing the fight

I actually fell asleep for about 45 minutes according to my dear nurse. She was so concerned for me. Things were brighter this morning. I met my day nurse, Maura, which is also the name of one of my cheeriest cousins! :) Dr. Huie came in and said he felt good about the direction of my progress. If I stayed on course, I would leave the ICU for a regular room later today and p o s s i b l y get out tomorrow. Another score for the win column! I suppose the look on my face was a bit too revealing of my optimism because he stopped me. He quickly reminded me that I was FAR from okay. He TOO vividly described me as a patient that the EMTs dropped by the ER on the way to the morgue, and a day later is simply the most severe asthmatic patient he's ever treated. He said better is relative. I understood and agreed because that's the way I live my life. Once again, I'll take it. :)

I left Maura later that morning for a beautifully new renovated room on the fifth floor and more top notch care-givers. Unfortunately, I arrived to my new room feeling a bit worse. My first round of vitals revealed a fever and diminished airflow. By the time Dr. Huie visited at 6:00 p.m. I was clearly going downhill again. He was so disappointed. He said it would take more time, but he and "Amy" (Dr. Olson) were talking constantly and absolutely on the same page. He would bump my meds a bit, but not much because they had to force my lungs to start working on their own again.

Feeling a bit dismal, but comforted by the KNOWING the A-team of the century is on my side, I pushed the aches and exhaustion from fighting away. I curled into my bed and escaped to the cheerful world of anecdotes and nonsense texts from my dearest friends.


Happiness from the School & Friends I Adore!



The day I DON'T want to blog about...

As I mentioned, I've still been having quite a bit of trouble breathing even since I was released from the hospital. I've been counting the days to my appointment with Dr. Olson. I even tried to get in earlier on Friday, knowing I was in pretty bad shape ~ no availability though. So anyhow, I really struggled all night. Knowing I'm not supposed to take any asthma medication or inhalers before these first tests of the day, I tried to take my last dose at about 3:00 a.m. thinking that would get me through and not impact the test too much. By 6:00 I was in really bad shape again. My peak flow was only 60. I knew I would only get worse as I started moving around... push through and focus though. I started dressing and getting worse. By 7:00 I had to make a choice. I couldn't register on the peak flow, I had to do a treatment, I knew I was in bad enough condition that it would not impact the test. It helped some but I was still struggling.

I entered the friendly doors of National Jewish, Mom headed back home to get ready for the appointment with Dr. Olson (she's so not a morning person :) ). After registration, I headed to the dreaded 3rd floor sick about what I knew was coming. I hate failing these tests. They're so hard and so frustrating. Buck up though, it had to be done, and I'm tougher than this.

A new tech called me back, funny that I know everyone now, but I do & I got the new girl. Drama immediately ensued because I took a treatment at 7:00. She was bumfuddled at my audacity to break such a solid rule! She called Dr. Olson to tell on me. I was so calm and cool, I knew Dr O would understand and continue the test...which she did (in a one second conversation). The test lasted an hour and ten minutes. A treatment was included in the middle but with all the blowing and breathing effort it required I continued to struggle. I was exhausted and fighting back tears. I just wanted a break.

I was so relieved when it was over because according to my schedule, my next test was a simple 6-minute oximetry walk test. No arterial line gas draw listed. I felt secure. I checked uplifting texts from dear friends and composed myself. I was going to get through this. Juan called my name, I was ready.

He took me in the room where he should have grabbed a pulse ox machine, got a resting reading and set off for the walk. Instead he started folding a towel and I got a VERY sick feeling in the pit of my stomach. I knew exactly what he was doing. He was preparing for a arterial line gas draw...that wasn't on the schedule..damn Jennifer! I had to stay calm but I could feel myself getting weaker, I didn't know if I had it in me. I texted Debbie when he stepped out of the room. She's been through this with me before...she knows. She responded immediately like I knew she would. I dug deep and somehow made it through his digging and grinding through the interior of my wrist with his needle. He returned within ten minutes bustling through the room. He shared that my blood O2 was 84% and he would have to put me on oxygen for the walk as well as escort me to Dr. Olson and talk with her. We completed the test as I originally anticipated + an O2 tank in tow. I asked if we could take it off in the waiting room downstairs and let Dr. Olson talk with me about it & he agreed... hesitantly. When I left the exam room Mom was in the waiting room. The sight of me on oxygen killed her inside.Words just can't express what I feel like when I am putting her through this. These are the times I'm describing when I talk about not wanting people around. Not wanting my Mom to come to Denver with me. I know and see the pain I cause because they love me so much. I'm so tired of this battle not just because of what it's doing to me, but because of what it's doing to those who love me. It's just too much.

Anyway, I was quickly called for my appointment to Dr. Olson early. Apparently my other tests were cancelled. I went back for check in and Kaci walked me to a room. The minute she saw me she was so sincerely concerned and asked what was going on. Of course I said, I'm okay, and asked how she was doing. She laughed and said "only you Toni, Dr. Olson wants to get in here right away to talk to you about your oxygen." I had a gut feeling that meant we wouldn't be dealing with the stuff the appointment was originally about. I completely trust her though. She is the one and only doctor that has fought and studied and dug deep to figure out the mystery of me.

She walked in the room and did not mess around. I downplayed my symptoms as always, but of course I have been pushing through like this for days now. So this day really wasn't so dramatic to me. This is my life, I'm not going to stop living it. When I can't get into the doctor, I do what I know to do to help myself survive until I do get in, I don't just drop on the floor and stop existing until then. Anyhow, she sat down and further examined my numbers from the morning tests. She asked us how long we were in town. Mom quickly responded that we were leaving Wednesday morning and I calmly let her know that we were here for her to do what she needed to do. She didn't waste a second to make her decision. She said that I was NOT near okay, it was beyond critical. She was sending me to the hospital. She looked at Mom, concerning the timeframe, and Mom, tearing up said, I trust you and want her better. She said so do I...more than anything. She left the room and we heard her calling an ambulance...then the hospital ER. She was direct and concise. She left nothing out about how she wanted me to be treated. She returned quickly with a complete printout of my complicated health history to carry with us. She told me the ambulance was not an option & I was going into the ICU. Kaci walked in with oral meds to jumpstart me, another neb treatment, and some paperwork. In minutes I was on a gurney and out the door. I looked back and Mom was crying hysterically. My heart was breaking. I couldn't fix this. The EMT, Mike Dillon, was fantastic. He was talking to me calmly. Praising me for being so calm and under control and telling me not to worry about Mom - they would console her and get her to the hospital. In a fog, I heard him talking to me about how it was very likely that they were going to intubate me before or as soon as I arrived at the ER. He (and they) would take every precaution to prevent it, but my stats were spiralling quickly.

This was all registering in a way that I couldn't even process. I had to stay strong for Mom. I had to stay strong so not to make things worse. If I fell apart, they would undoubtedly have to intubate me. I am strong, I can beat this weak body. This won't happen this time, not again, not here. Not while Mom is by herself.

In the ER, at least 20 people were hustling around me. Hooking up lines, tubes, machines, listening to my non-working lungs, discussing options, reading the info from Dr. Olson, & talking about what she had said on the phone. Then they moved in for another arterial line gas....I started to lose what little I was holding on to. He started jamming and digging in my other wrist. I could feel him gouging the inside as he shoved my hand against the bed for leverage. He left with the tiny sample and minutes later returned saying he hit the vein and needed to go for it again. He went to the wrist Juan had accosted earlier. Still swollen and blue all over...so tender. He jabbed his needle in saying he didn't want to drag it out for me. After THREE minutes of the same grinding he pulled out the needle and pumped out his chest for his colleagues. They pulled the curtain for Mom the change me into the gown and I broke down in pain. I knew it would make me worse, I tried to stop, but like a toddler that falls on the sidewalk, sometimes the pain overcomes you. I pulled it together and was ready for them to continue.

Mom pulled the curtain back and they all rushed back in. They were injecting meds and starting fluids. They rushed out again as the the techs entered for the portable x-ray. When he finished, they removed my oxygen and hooked me to a huge machine that was supposed to force air into my lungs. The uncomfortable mask covered my head. The kind male nurse apologized, but said this was a measure short of intubation. They were truly trying everything they had. People were coming in just to cheer me on, support me, and beg me to hang in there. I heard one lady answer the phone and respond "yes Dr. Olson. We're doing all we can for her." What a doctor?

They finally rolled me to my ICU room where I was told I wasn't out of danger yet. My nurse was in and out of the room every ten minutes to check on me all night. It's all so foggy now, but sometime during the night, all their efforts came together, I began to stabilize. They turned off the big machine much earlier because they said my airways were too constricted and fighting against it too much. Around 3:30 a.m. my dr came in to check on me. His name is Tristan Huey & he's amazing. He said he felt like I was stable enough to be out of danger of needing intubation. I felt so relieved. I could tell he was too. He said he was still concerned about how my body would react when I started moving, but we'd deal with that in the morning.

I stared out my big Colorado style window after he left and felt good about news for the victory column. I knew I wasn't really much better, just extremely loaded with meds that were doing all the work for me. That would have to do for now though. At least I was awake, taking in my own breaths, and here to see another sunrise. That's where I'll direct my focus for now.

Week Two

So, obviously the main event of this week was the surgery. In a nutshell, it was pretty rocky, but in the end it was a success & that's what really matters. :)

I hardly slept Monday night because I was having so much trouble breathing. I knew that wasn't exactly good in terms of having surgery the next morning, but I also knew the docs were expecting my trouble to some extent...and prepared for it. That's how I reassured myself that all would work out. (I'm pretty good at reasoning situations so I have no room to worry!) We left the apartment at 5:20 a.m. to head to the hospital. By 6:00 a.m. I was registered, in a lovely gown, & in a bed in the pre-op room....still struggling. The nurse was quite concerned, but couldn't order treatments without the doctor. I reassured her that I'd be okay until he arrived. She trusted me. Mom was completely beside herself. I could sense her tensing more and more with each passing minute. She even commented to the nurse that she loved and hated my calmness, but knew it was a life-saving quality in situations like this. :) The nurse tried to start my IV, but had that familiar trouble and blew veins likely because of my breathing. Another nurse was finally successful.

Just as they finished the IV, one of the anesthesiologists popped in. Her name was Mary Walker :) and she was a delightful soul. She immediately noticed my struggling and calmly jumped into action. She checked my O2 level, which was 89% and hooked up the oxygen mask. She put me on 10 liters of oxygen and ordered a treatment. Dr. Ramakrishnan walked around the corner just at that time. He gave me an OMG look, I smiled at him and he just smiled back shaking his head. He and the anesthesiologists consulted about the dangers of continuing with surgery in my condition. They laid it out for me saying I could end up on the ventilator overnight or longer, they could get me off but need to keep me overnight, or they could cause damage while intubating me because of my low O2 & brochospasms. At the same time, Dr. Ramakrishnan said that this could be as good as I get & it is the reason I am here ~ to get better. I agreed without hesitation. After a lung x-ray they all agreed to move forward. I said good-bye to Mom as was rolled to the OR. Dr. Ramakrishnan said the surgery would take an hour and we were underway.

The next thing I recall is being in recovery with people all around me. I was really struggling to breathe ~ but NOT on the ventilator! One of the nurses looked at me with a sweet smile, grabbed my hand and said, "You're quite the fighter, Toni! Don't stop now! We don't want to intubate you again!" I just smiled back at her. They said they'd let my mom come back as soon as I was more stable. When Mom came back she looked so scared, like she'd lived through a horror movie. She told me the surery ended up taking over two hours. They had trouble itubating me safely to start with because my airway was already so constricted. (in emergency situations they don't hesistate, but for a surgery they don't like to be so brutal). Then, the area in my forehead, near my cranium and around my eyes was in worse condition than the CT revealed. He had to work much longer and more intricately to complete his work successfully. In the end, my lungs were not responding when they stopped the ventilator. It took time to get me off, but they were successful. When they did, my stats plummetted again quickly and were hovering the need for re-intubation. They wouldn't even let Mom come back to see me until they felt they had me out of the woods.

Eventually I was in a room with a beautiful view. Dr. Ramakrishnan said he'd likely release me early in the morning. It ended up being more like four in the afternoon because my lungs just weren't cooperating. While I was there I had the most caring nurses and techs you can imagine. They make you feel confident that they are on top of your care. They are always aware of your stats and take action within seconds of a problematic change.

My view...

Since getting out recovery has been pretty smooth. My frustrating lungs have been the biggest obstacle for me. I've certainly had some pain due to the surgery, but have only taken one pain pill. They make me itch so intensely that even two Benedryl don't provide relief. I decided the pain is easier to handle than the itching! It was a pretty simple choice! :)

Tomorrow is a pretty big day. I'll admit I'm even a bit uneasy about it. I'm going back to National Jewish for lots of tests and my appointment with Dr. Olson. She's been my superhero through this battle. She has stuck with it and fought to solve the mystery of me. I'm looking forward to seeing her comforting face, but nervous about the tests. I know I'll get through... I just kinda wish I could fast forward this time! :)

Week One

I guess in a word, this first week was eye-opening. This trip has been quite different from recent ones in several ways. I guess since I'm more familiar with the city now, I'm even more interested in being part of it as an escape from the actual reason I'm here. That hasn't really been an option this time, which has made things a lot tougher than I anticipated. I'm missing home and friends more than ever and find myself going to bed as early as seven just to escape my own thoughts.

My appointments have been pretty routine. I had very in depth meetings with all the people that will be involved with my surgery. It was actually pretty interesting. They're taking extreme measures of caution because they're quite concerned about my unstable health condition. The biggest news is that Dr. Ramakrishnan, the ENT/surgeon insisted that I stop taking my aspirin. I've been on 1300 mg of aspirin for quite a long time now. Stopping the aspirin means I'll have to go through the desensitization again. (a two day intense procedure in the ICU) He cleared it with Dr. Olson - and I dropped it from my daily regimen. I'll find out when I meet with her more about her thoughts on dropping it for good or going through the desens again.

We were all surprised to find out how much of an impact the aspirin has had on my breathing. Of course we had hoped, but truly had no idea. About a day after stopping, my peak flows began to plummet - drastically. For these days leading up to the surgery, I've simply been doing everything I know to keep breathing and focus on the reason I'm here.

ahhh, Colorado

I love this place. I don't really even understand why. I would have always described myself as a "country girl" at heart. I love nothing more than the beauty of land ~ rolling acres of green grassy land. I dream of owning land one day, just like I grew up on. With that part of me still completely alive, I lie in my bed here in the heart of Denver and realize I have fallen in love with this city. I love the sounds of the city coming through my open window throughout the night. I adore the beautiful lights, the fascinating neighborhoods and streets, the tiny shops nestled away, and the busiest downtown district. I love the view of the mountains as you walk down the sidewalk or drive to an appointment. And the sunshine ~ they aren't kidding about the amazing sunshine. It's hard to explain how different, how wonderful the weather is... daily.

As hard as what I'm about to face here might be, this setting is a true gift that will make each day a bit easier.

the elusive treatment

The call finally came! The lab results are in and positive! I am eligible for the treatment. It's been a full month now since Dr. Olson wanted to get it started, but finally here we are ~ Kaci is on the phone telling me I have the green light...  Then I coughed, wheezed a little and she stopped me. "You can't start the treatment if you're sick, Toni."  The words stabbed through me like a dull knife...no no no no no no. I explained to her that I was just released from the hospital, but that I felt great, so much better. I was ready, completely ready to start.

She talked with Dr. Olson and they decided it was too risky. I needed to wait until I arrived in Denver and she could examine me before I started it. So, once again, not yet...

plans plans plans

That was my plan anyhow, get better & get out on Wednesday like Dr. McIntosh had hinted...so much for the best laid plans. Sadly, Tuesday night was still pretty rocky. By morning, I was moving a bit more air according to all who listened to me, but sounded "terrible". What a nice thing to hear about your lungs on the day you wanna escape the hospital, eh? Oddly, I was still optimistic. I felt like he would know I could handle being on my own on the oral meds.

Once again, I was wrong, quite wrong. He came in after lunch and said there was no way he'd feel comfortable releasing me as obstructed as I still was. :(  This is where I should add that I've been very unemotional lately. Almost detached in a way. Hospital usually really gets me and it had not this time...I was holding strong...until Dr. McIntosh told me I had to stay. I felt so...discouraged...like nothing really does matter or help anymore. I also felt very alone, which is so weird because I have sooo many people caring for me right now. It's hard to describe.

Anyhow, the deal was, he would remove all IV meds and switch to oral. If I remained stable or improved, I would get to go home Thursday.

That gets me to this morning, I once again thought things were going ok when the nurse came in and hooked the IV up again. I was crushed. She said I wasn't doing so well and needed more time on the IV. I decided to believe it was just a last boost of strong meds before he sent me home.

It was. I was released this afternoon with directions to go to Denver and let them do their thing! So, it's Thursday evening, I'm preparing for a busy day at work tomorrow and two short days of prep time before I hit the road. Nothing like a little change in the plans. At least I am breathing though....  :)

Really.Bad.Timing.

I started to have symptoms of an infection last week. I was stable and my meds were helping though. I knew I had this long standing appointment with Dr. Thompson on Monday, the 26th so I decided to hold off as long as I didn't get any worse....I didn't. I had a rough cough, congestion, etc. but was very stable. That was, until Monday afternoon around one o'clock. I was teaching reading groups (the first day of them I might add) and my chest was rapidly tightening. My inhalers weren't helping much at all. I was noticing that each time I went to pick up a new group, it was harder to get my breathing back under control. I was quickly spiralling downhill. I kept looking at the clock waiting for the day to end so I could get to the doctor. By dismissal...me the it's all okay person...I was feeling a little concerned. I actually thought about telling Leigh Ann I didn't think I could make it through bus duty - I stopped myself and thought how ridiculous - of course I can do my bus duty - it's my job...and I did it. I left immediately though and headed straight to the appointment. I did a nebulizer treatment on the way, but it didn't help much.

When I arrived they did spirometry and a pulse ox and sent me right back to the exam room. Dr. Thompson came in with the results in hand and a concerned look on his face. He asked what brought me in & I told him it was the follow up appointment that had been scheduled since back in the summer :). (A little humor never hurts). He chuckled - then quickly looked back to the results. He said the numbers were hospital level for normal people, but he knows I'm strong and positive and everything so he didn't want to be an alarmist. (haha) My O2 was 90% and my lung function was 20%. (not so cool). He offered that he might consider several hours in the ER on IV meds to get me on track then release me, but wanted to listen to me first. After he listened to me, he said that wasn't an option. I wasn't moving any air. He said it must be by sheer will power and the grace of God that I push through. He said the only option was a couple of days in the hospital to turn this around. My lungs were too obstructed. He felt confident that if he sent me home I wouldn't make it through the night without going into respiratory failure.

Within the hour, he wrote out the orders, I packed a bag, and I was here at good ole CB in the registration office. Not good timing - I am leaving for Denver Sunday - I have things to do. I do not need to be tied to a hospital bed right now. Uhg! Sometimes my body makes me sooooo angry. I must admit, I know it was the right decision though. I was in bad shape. By 7:00 p.m. I was in my room, IV in and everything all set, but only getting worse. My oxygen continued to drop. I'm pretty good at cool, but I'm pretty positive that if they had not acted when they did, I would be on a ventilator again right now. It was a perfect flashback to 2003 when I was in the ER in Georgetown and went into respiratory failure. This time my oxygen dropped to 82% and I couldn't take a breath at all. Good nurses and techs took care of me in time though. During the night and the next morning my lowest reading was 77%. The nurse called the doctor and he increased the solu-medrol, oxygen, resp-therapy treatments, etc. and altogether that worked to stabilize my stats. Now, on 4 liters of oxygen my O2 is holding strong at 94%.

Dr. McIntosh, one of Dr. Thompson's partners stopped in and said that if I stay on the right track he might be able to release me on a high dose of oral meds late tomorrow. That's something to hope for. :)

For now, I'm going to try to stop worrying about all the work I need to be doing at school and the precious time I'm missing out on with my students before I leave for Denver. I'm going to try not to break down. I'm going to try to let go and just get better so I can make the trip Sunday and start getting better for real...for good. That's the plan for now...

A bad attitude, submission, indifference, exhaustion?????

Well, I honestly can't explain, but I feel like it's time I write about it. Since the big diagnosis phone call there has been a pretty big change in me...slightly gradual...but at this point...significant. All in all, I guess the best way to be blunt about it is to say that I really don't care anymore...about much. Now I want to be clear and straight with the me down the road that looks back on this...I truly don't feel I don't care ~ depressed it's more of an indifference or done with this huge fight that I've been battling for~so~freaking~long. For example, I'm done fighting to eat when the thought of food makes me feel sick. I'm done trying to convince labs, doctors' offices, and such to share information, do tests, and schedule appointments. I'm done hoping results will be ready or even sunnier. I'm done sharing bad news with family and friends that hurt for me. I'm done trying to make good choices because I think it will make a difference. I'm done caring for a little while. I'm done dealing. I'm done trying to sleep. I'm done waking up short of breath. I'm done hurting, aching, and having muscle cramps all the time. I'm done hoping or believing that this next thing is going to work or make a difference. I done with the nots and the limits. I know, I know as much as anyone that it's not that bad. Things could and can be so much worse. I know that. I don't like to complain. I can't stand complaining. Even though this is a rant of my thoughts - it's less of a string of complaints and more of an explanation of how and why I feel indifferent. Maybe my body has coped and held itself together for so long being in a state of the unknown that when I finally got the diagnosis it just kind of let go. All those years of effort in holding myself together released in a kind of submission to finally having an end...and answer. As I said, I don't know the reason, all I know is I feel different, I don't know that it's necessarily good. Maybe after I get back out to Denver and start treatment I'll start feeling positive and stronger again. For now though, bad attitude, submission, exhaustion, I don't know...what I know is that I have an overwhelming feeling of I just don't care anymore. I'm just done for a while.

Is this a sick joke?

I left work at 8:20 this morning thinking this would be no problem to get Dr. Neal to order the TPMT level test, run upstairs to have the blood drawn and rush back to work. Oh me and my good intentions...when will I learn- I'm just glad I can still be blindly optimistic! Ha! As you can guess it was one silly road block after another. Sometimes I really feel like I'm in the middle of some kind of practical joke. First the nurse shewed me away after my detailed explanation like I was there to stalk or harrass Dr. Neal. She told me they'd get back to me in at least 48 hours....ummm NO! I went to the car, gathered my thoughts in the pouring rain and developed my plan of re-entry. Long story short, after three tries and 2 hours, I finially got the orders. Geez! I trotted upstairs to the lab (which has always been empty) ~ not today ~ no not today. One & a half hours later I was called back, passed my orders over, prepped for the draw, and halted by the tech short of a needle stick. Believe it or not, blood cannot be drawn for this test until after 3:00 p.m. - yes, that's right, not until after 3:00 p.m. By this time it was near lunchtime...not near 3:00 p.m. My blood was apparently not ripe...not ready for the draw. Lucky for me, this lab was closing at 3:00 today and it would be too risky to draw it at 2:45. I would have to go to another office between 3 and 4 today to finish this process. OMG

Well, the blood was drawn at exactly 3:43 p.m. at the alternate lab. My only hope now is that the correct test was ordered and my odd sleeping habits didn't effect whatever magical is supposed to happen to a person's blood at 3:00 p.m. daily. We shall see in 5-7 days...

Not the Best News I've Heard All Week...

Well, to fill in on recent events...I did call about the labs for Dr. Olson~it wasn't a pleasant series of events that led to today. That Friday, they weren't in, but expected them Saturday which meant Monday. On Monday when I called, the lady actually yelled at me and told me NOT to call there again. I should get the results from my doctor. I calmly explained the situation, but it didn't matter to her. They weren't in and she wasn't in the mood to speak with me. Needless to say, I didn't call again Tuesday. I felt confident they should have been in and been faxed to Kaci though. We were emailing back and forth and I told her to expect them. Wednesday I tried to call, but they were already gone for the day.

This leads to Friday afternoon. I missed a call from National Jewish during bus duty. Of course I couldn't call back, because I didn't know who it was from. I had an email at home from Kaci, she said they had the labs and Dr. Olson just needed to review them and she would call me later. At 7:00 p.m. Kaci called, it had been her earlier. Her voice was almost...sad. She said she didn't have great things to share with me. :( Okay, let's hear it. They had reviewed the lab results and the lab had performed the WRONG TEST on the blood! Yes, that's right, WRONG TEST! Dr. Olson double checked the order she had sent and it was correct. She had ordered a TPMT level and the lab order some kind of liver test instead. Needless to say, over two weeks have been wasted and now we have to start over again with testing because I can't start treatment without the results of this test. Deep breath, deep breath, deep breath - I can handle this. Her suggestion was to go to the rheumatologists office Monday morning and have him order the test through his preferred lab, surely they would know to do the correct test.

On top of this she also explained that there is some confusion about my surgery. I got a bizarre phone call earlier today from the surgeon's temp assistant asking me why I had scheduled the surgery on my own. Of course I didn't do that, someone called me and told me to set it up, but she made me feel like I was losing my mind. What is going on??????? Apparently after talking to me, she called Kaci. Kaci said Dr. Olson was going to take care of everything. The surgery is extremely important. They would never have me do it if it wasn't. It's a type of sinus surgery, but they are telling me not to call it sinus surgery because it is so different and so much more complicated??? There is so much I don't understand right now.