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.

An Optimistic Call

Dr. Olson called tonight and she was so excited it was contagious! She was calling to find out what was going on with the labwork because she hasn't heard anything & it should be in. She asked me to call them in the morning to check on it and let her or Kaci know.

She also wanted me to know she and the other doctors had been studying my case more and felt really optimistic about the things they were putting into place. :) She felt like this treatment might be a little tough, but would be the real answer in the long run. It should even help with my sinuses and asthma! Wow. She was so happy to finally have answers! She went on and on about how good this could be. She made me promise to call her as soon as I knew something because I had to start getting better...all I'm doing now is getting worse every day and she insists that that stop SOON!! :)

A little more info

In this nightmare I seem to be living out by having to deal with all this "medical mess" sometimes, Dr. Olson seems to be the constant I can count on. She did talk with Dr. Neal, my rheumatologist that very night apparently! Impressed! I got in to see him on Wednesday because of a lucky cancellation.

It was an interesting visit - one of those where you get really excited at first and think YAY - things are so much better than I thought, then the balloon is instantly deflated and you leave wondering what happened...yeah, like that :).

So, Dr. Neal walked into the exam room and said he'd spoken with Dr. Olson about the Churg Strauss diagnosis. He said he pretty much agreed with he and thought treatment was warranted because of all I have experienced. He stressed that he didn't foresee it being a big deal at all. He thought that a simple couple of months of the treatment would stop and even reverse my symptoms. We'd be able to stop the treatment and all would be well. He didn't think side effects would be a huge concern even in my situation because of the short term need. This all sounded WAY too good to be true - and we all know what that can sometimes mean. :( 

Because he had mentioned that his most recent lab data was what he had ordered back in March, I pulled the reports I had brought to show him from my most recent visit to National Jewish. I had the reports from Dr. Maleki, the rheumatologist, Dr. Olson, and Dr. Katial. They were just the initial summaries from the visit, but provided more details & data than Dr. Neal had on hand. He started reading through Dr. Maleki's report immediately and making long faces and groaning. Then he started pointing his finger at me with a "wait a minute" type gesture. My stomach started to sink. I wanted to grab his hand like a 2nd grader and say "No backsies Mr.! You already gave me the good news!" I could feel my hands getting clammy as I waited...

He slowly looked up at me and said, "Okay, you've progressed quite rapidly since I saw you in March. These numbers are remarkably high. I'm afraid the outlook might be a little different than what I described..."

"What do you mean" I asked.
He proceeded to explain that my case is complicated (where haven't I heard that one before!). At this point he can't even give me a ballpark figure of how long I will need to be on the treatment or how my body will react to it. He still has every reason to be positive, but it does seem that it will be more difficult than what he had at first described. It's still an answer and a plan and that in itself is a good thing. He said the most important thing for now is getting that labwork and making sure I can take the drug. I told him the labs had been drawn Friday. He was delighted the process had been started. He expected them to be ready as early as tomorrow but no later than this Friday. He prescribed the treatment so that as soon as the labs came in, assuming positive results, he could call me and I could start taking it immediately. He, like Dr. Olson, was adamant that no more time could be wasted.

I left feeling slightly overwhelmed and more informed all at the same time.

Are you ready for this?

If you keep asking for answers long enough, eventually they will come flowing in like a river. Today I was showered with much of the information I've been waiting for. Are you ready for this?

It all started when Kaci called and gave me the name of a scheduler at the University Hospital to call to get all the information I would need about my impending surgery. I gave Judy Bryant a call and she was a dear sweet lady. She told me more than I wanted to know about how dangerous and invasive this surgery will be. She let me know that I will likely be staying at the hospital afterwards for a day or two. I was shocked to hear that I have to be in Denver for at least three weeks for the entire process. This is much more serious than I ever expected. She said my other health concerns and the complicated nature of the surgery all factor in to the long stay. I'll be in Denver at least from October 3 - 21. Wow!

To top it off as I was leaving school, my phone rang again and it was Dr. Olson. She told me she'd been analyzing the EMG report and it is evident that rather than hypereosinophilic syndrome, my diagnosis is actually Churg Strauss. Whoa...I didn't expect that. The treatment they are going to try is a chemo drug called azathioprine. She's ordering a blood test first to make sure I can metabolize the drug, but as soon as those results are in she wants the treatment to begin. She made several comments about how important it was that this treatment start as soon as possible. She had just called Dr. Thompson and discussed the plan with him. I talked with her about continuing the plan with my rheumatologist and she took his number to call him tonight.

This is really big news, news that I know hasn't even begun to set in and I don't know when it will. I've read some about Churg Strauss and know about ten in a million people are diagnosed with it. I have a diagnosis. I could actually start to get better soon...for real this time. I get to start a treatment soon - to help me feel better. I don't know if it's crazy to be relieved and scared at the same time, but I am. Dr. Olson was very concerned about the fact that this treatment is a strong immunosuppressant - especially with me. She is concerned about how I will stay strong considering my current immune system and my work environment. I have to believe though, that the mere fact that we know what we are fighting FINALLY gives us the advantage. It has to help. She has never given up the battle to help me ~ I am confident that she won't be stopped by pesky side effects. This has to be All Good.

finally an EMG

WHOO HOO! Prayer Perseverence Pestering ~ pick your p-word but I think they are all to credit!! Katie (the scheduler at Dr. Thompson's office) actually answered the phone yesterday when I called. I could tell she wasn't thrilled that it was me (I've only left 700 messages recently). Get this though...there is no big catastrophe, EMG malfunction, or other reason the scheduling could not occur...she said when she got my first message she went and talked with Dr. Thompson. Without saying negative things about him, she made it clear that he simply wouldn't help her with the orders for the tests for me. Rather than calling me right away to let me know so I could take action, she chose avoidance. I was stunned by her honesty. I was a bit disgusted too.

This is one of those times where you have to make a choice in life - a choice for yourself - and that's what I decided to do. I completely released all possible negative feelings that could come from what Katie shared. It was over - she's talking to me now - I can't change the past so I won't hurt myself by holding on to it.

We both moved forward and together, (without Dr. Thompson) we got the test scheduled!

I went in for the test today at 10. I know I've been through a lot of tests and I should be getting tougher - but I have to admit, this wasn't an easy one. Debbie offered to drive me over and I'm so glad she did. She was a wonderful distraction. The test involved electric shocks pressed into my skin about every 4 inches from my neck, down my arm, back, and legs. I truly felt like a dog being tortured with a strong shock collar - I've felt one & this was a good bit stronger. Part two used a needle instead of metal prongs but covered the same area. Geez - the end of all this has to be near. Minutes after the test Debbie rushed me back to work. She pulled to the front door. I took a breath, brushed away the anxiety & emotion from the test, put on my smile and walked back into work to finish the day.

The good news...really good news is that they said they'd have the report ready THIS AFTERNOON!! Wow, that's wonderful. I gave her Dr. Olson's fax number and she promised to fax it directly to her as soon as it was ready. Of course they weren't able to tell me much, but the doctor that performed the second part of the test said he did see some discrepencies that he'd be looking into. All I know is that a negative on this test means no Churg Strauss. I don't know what discrepencies would mean?? I guess all I can do now is continue to wait for answers and keep pushing through...

...and somehow I keep getting up again

So, I did get up again. I did "wipe my boots off" so to speak and tried my best to take matters into my own hands...and I'm still trying. I can't begin to see past this fog I'm living in right now. Oh but I wish I could. I wish for clarity in this frustration. I wish I could know and understand why Dr. Thompson won't order these tests?? That's right, I called, and they haven't been scheduled just because...no reason, just because he won't right the orders and no one will schedule them. I've called multiple times daily. I've stopped by the office & I've even tried ordering the EMG myself through a neurologists office. All to no avail. I feel so broken and weak...so worn down. Somehow though, I'm still pushing through. Still getting up each day and trying again. I've caught myself wanting to give up, but I just know that it's not an option. So I get up, pull myself together, and try again. My life has been proof though that prayers work...miracles...hourly! The timing just isn't mine (I have to remember that). It's just so hard to understand why things are playing out this way when I'm in the midst of it.

Surely something will happen soon. Something good has to come from my perseverence...

down for this count (but I'll get up again)

The hits came in droves today. Of course we all know that's just how it works in life. I put every ounce of my effort into hiding the evidence from the blows when people were around throughout the day.

It all started with finding out that the message I left for Dr. Olson last Thursday (& the nurse posted as urgent) was never filed. That means I've been waiting seven long days for a response to something that never existed! Seriously!? You've got it, there flowed my first tears of frustration. It's not like I was asking for Tic Tacs ~ this really is important stuff. The medical leave paperwork from central office expires in eight more days. Seven days were just completely wasted because of a lost message - ugh -frustration. Deep breath though, nothing can be done about that now. This nurse took my message and promised to hand deliver it to Marsha (Dr. Olson's nurse on Kaci's day off).

The next blow came when Marsha called. She said Dr. Olson probably would not be calling me because she didn't have the results from the EMG. I was so ready to have a complete and total meltdown but instead I just froze. Marsha sensed the tension and repeated herself. I tried to compose my shaking voice and simply replied, "What is an EMG? I didn't know I needed to do that??" She could tell I was upset and probably had no idea why. It turns out Dr. Olson talked with Dr. Thompson last Monday night after she talked to me. She asked him to order an EMG and another test on me asap and get the results to her. These tests would help to rule out Churg Strauss and solidify the treatment options. I didn't know she needed these tests and he hasn't done anything to make it happen. I can't even describe how betrayed I felt. It was as if Dr. Thompson's negligence was delaying my medical treatment - the treatment I've been waiting and hoping for for so many years now. It is so close and I'm only 2 tests away. He couldn't just place those orders last week? Would that have been so hard to do? I just don't get it? Why is everything so complicated?

I am guessing after Marsha talked with me Dr. Olson realized she probably should give me a call even without those results. She called around 7:20 but it wasn't a heartwarming conversation. She let me know that Dr. Katial could not find any options for getting the IL5 treatment for me. This was hard to hear. I told her about the possibility of medical leave and she said it might not make a difference. :(  For now, assuming the nerve conduction test results are negative, they are looking at using the second treatment option, hydroxyurea. It's an older medicine that isn't quite as successful as IL5 but still very good. It also has a long list of pretty severe side effects. I'm not sure how they compare to the side effects of steroids, but it's just frustrating to think of trading one problem for another without gaining much benefit.

Finally, the last punch that knocked me down for the count was the medicine. It's a little thing after losing hope for IL5 but it was enough to make me give in. Tomorrow I have to start back on the meds that were making me so sick for the last two weeks. I have a respiratory infection but my stomach has been pain free since I finished the meds on Saturday! Maybe it won't be so bad this time though. That's what I'm gonna hope for...

This is what I know... Today is proof that I'm not strong enough on my own, but I can do all things through Christ who gives me strength.  He carried me through today. I did "get through" but I'm definitely down for the count. But, tomorrow, I will get up again. I'll smile at everyone I pass. I'll wake up believing and knowing this is all for good and it's all part of a greater plan. I'll keep moving forward and keep getting up again and again.

facing the giants

The First Day of School! This is the eleventh time I've been on the teacher side of those words (12th if you count student teaching). This year was the first year ever (in my school life) that I was filled with dread though. I guess that proves that doing something to save your own life doesn't necessarily mean your heart will be on board with the plan...my heart is still in the classroom. No amount of reasoning or logic has been able to sway it yet. I'm hoping time help...and hopefully sooner than later. I really hoped I'd be handling this a lot better by the time school rolled around. 

My stomach was still hurting quite a bit and my peak flows have been pretty low. I was in my little room doing all I could to get myself in the mindset of "I'm completely okay" when a teacher walked in. She was complaining about getting a new student last minute who she knew had been a behavior problem in my class two years earlier. I stood there, listening to her complain about a child she didn't know. I calmed her down, reminded her he is older & how much he improved while I had him, & how lucky she is to get a student we know ~ all the while I was crumbling inside with jealousy, anger, and sadness. I was hating myself for being sick and wishing more than anything that I could be his teacher again.

I am thankful beyond measure for Debbie. I know it wasn't her only reason, but I know that she chose me to help in the office with transportation tags on the first day because she knew I wasn't ready to handle facing the kids, parents, and void of my own room. It was a true gift. I was so busy from the first bell to the last that I hardly had a chance to realize where I was. Tomorrow, I'll be ready to face the giants. I am thankful for this job. My heart just needs time to get on board with it. I'm all about making the most of things. I just haven't handled this "limit" that has been placed on my career very gracefully. I'm working on it though...I'm working on it.

fear~a foreign feeling & I don't want to get any closer

I may worry about certain things like people & getting a job done etc. but I have never been the type to be scared of or about things. I don't know if it's because of how I was raised or simply part of my make-up, but I'm not a fearful person. That's probably why the few times I have experienced fear, it has really shaken me up. I truly feel for people that are scared all the time. That overwhelming sense of terror and lack of control is paralyzing.

Today is my fifth day of hardly eating or drinking because of this medicine. Each day I've had enough liquid to swallow the medicine and have tried a bite or two of something here or there to see if I can handle eating again...no luck yet. I was working in the yard tonight, more as a distraction than because I had to. I was sitting on the edge of the brick flower bed pulling weeds. I remember coughing and having trouble breathing. The next thing I remember, I came to flat on the concrete. Jackson was on the ground beside me with his head on my chest. The back of my head is very sore. I have no idea how long I was out or why I passed out. I don't know if it was from not eating or because of my breathing. I don't know, but I do know I woke up and I'm okay now...that's what I have to focus on...

I found out last night that I have to take this medicine for 6 more weeks. Something has to give. I'm just not strong enough to do this. Tomorrow, I'm going to try to take small bites and sips all day. Maybe that will not be enough to make it too much worse, but give me more nourishment to help me get through. It's worth a try. I'm also going to have to have a serious talk with Dr. Ramakrishnan. Surely there is an alternative to this medicine he can try for the next 6 weeks that won't make me so sick.

I just know tomorrow will be a better day. :)

IL5 anyone?

The call finally came~at 5:50 p.m. National Jewish lit up on the screen and it was Dr. Olson's comforting voice on the other end. She said Kaci got the last of the results from the University this afternoon and she and Dr. Katial had just finished going over them. Things were complicated though. The diagnosis was not cut and dry. According to the results and all the other tests, they believe that they will label me with Hypereosinophilic Syndrome. The problem is, regardless of the diagnosis, the treatment I need is called IL5 (anti-inter leukin5) and besides the clinical study Dr. Katial is doing, they are having trouble finding it for me. It apparently isn't readily available in the midwest. Dr. Katial is going to do everything he can in the next week to find the treatment for me and they'll get back to me with the information. She didn't give me anymore details except that I really need that treatment.

I talked with her about the meds making me sick and my "not eating" option. She was very upset (recall our "you can't lose anymore weight" conversation on day 5). She told me to stop the azithromycin for now to see if that would help. She asked me to go have a renal ultrasound done. She said there was high number of eosinophils in my urinalysis so she needed this test as soon as possible. She also said they decided I should stop the Zyflo because of Churg Strauss??? She moved on to another topic before I could ask more questions about that. I thought they thought the diagnosis was hypereosinophilic syndrome & not Churg Strauss - so why stop Zyflo because of Churg Strauss??? I'll have to ask that question later.

Next, she informed me that Dr. Ramakrishnan decided my invasive sinus surgery needs to be in six weeks. WHAT?? Six weeks is much sooner than I had expected. To top it off, the staph is a bit worse than they thought and I have to stay on this antibiotic for the next six weeks. (It's quite possible that I might not make it. I really am not strong enough to make it another six weeks on this medicine.) I asked Dr. Olson if we could change the medicine and she put in a request to Dr. Ramakrishnan for me. Of course I told her I was ok and I could handle it, and I'm sure I can. That's right, I can, I can handle this.

So, for now, I'm waiting to find out where I will need to go for treatment and how long the treatments will last. I guess I don't really know anything except that I really need some IL5 to survive.

waiting makes me sick...or is it the medicine...

Anyone will admit that waiting for something like a diagnosis or test results is like waiting for a pot to boil. I find myself being hopeful one minute and confused the next. I anxiously pack my phone everywhere I go. My heart races each time it rings looking for the words National Jewish to pop up on the the screen. Not yet though, no word yet. Oh she just must call soon!

While I wait, I seem to be getting sicker each day. At first I thought it was anxiety, but now I'm pretty certain it's the medicine. I've always thought of myself as someone with an iron stomach. With all the years of steroids and strong meds I've been on, believe it or not, I've never had stomach problems with any of them (until now). That's why when Dr. Olson mentioned that side effect with these meds, I didn't pay much attention.

Boy is this different though. I've never felt so sick to my stomach. All I want to do is curl up and hold my tummy like a child. It's not your typical nausea~no unspeakable side effects...just an unbearable sick feeling that won't go away. I've tried everything I know to try and nothing has helped except not eating at all. I know that's no grand solution. I'm no fool - but I also know that I can handle a lot and I can hide a lot, but I've met my match. This is the only answer short of me staying in bed curled up in a fetal position. If I don't eat, I can tolerate the sick feeling the medicine causes. Any amount of food or drink seems to amplify it though. So, appropriate medical choice~I doubt, but the make it through another few days until someone calls choice~yeah.

"You DON'T have eosinophilic leukemia"

Those are heavy words to hear in a wrap up visit one hour before I have to rush to the airport. That's how it went though. Dr. Olson walked in saying those exact words. She was so relieved. She hugged me with tears in her eyes as she said it again with delight, "you don't have eosinophilic leukemia". She and Dr. Katial had been very concerned that it would be my diagnosis. It's not though!! (Let me tell ya though, even with the word NOT included, those words have a pretty hard impact when they're applied so close to home.) That's by far the biggest blessing of the week though! It's definitely something to celebrate. The preliminary results of the bone marrow biopsy are all they have so far, and all they know for certain is that it is NOT leukemia.

The next step is to wait. The rest of the results from the biopsy will be in by the middle of next week. Dr. Olson explained their expectations. It could be hypereosinophilic syndrome, Churg Strauss Syndrome, or terrible intrinsic asthma with high eosinophil counts. Regardless of the diagnosis, she said my treatment options have to change. Steroids do not work for my body anymore and have caused too much damage. There are chemo treatments or other therapies/antibodies they are going to try once a diagnosis is in place. Two of the possibilities are hydroxyurea or anti-interleukin-5 (IL5). She didn't go into details about prognosis or treatments for any of the possible outcomes. She said it would be best to discuss details when we know which one we are dealing with. As soon as the hospital calls with the results, all the doctors that treated or consulted on my case this week are going to have an interdisciplinary conference to create my treatment plan. She said she'll call as soon as she has any information.

That was the big news. On a smaller scale, she said tests confirmed I have an internal staph infection again. By Monday she will know which antibiotic she can prescribe for it and will call me with that information. We also discussed the dangerously low level of my current lung function and the fact that I'm heading back into a high risk environment Monday by going back to work. We were both concerned that I spiral downward too quickly before we will have time to get the new treatments started. She prescribed antibiotics and prednisone to get me back on track and stable.

She also increased my current asthma medications and added azithromycin, the antibiotic, three days per week. She said it would help to decrease lung inflammation. Many of the other tests from the week are still pending, so all of that information will also come later. For now, I'm thankful that I don't have leukemia and waiting hopefully to find out how to treat what I do have.

the real me

What a week. Even though I am recounting these events daily, it's simply impossible for me to express what's really been going on inside me. I just won't allow myself time to process the gravity of what I've been through. I've adapted so strictly to the art of pushing through that I don't even know how to be truthful to myself about pain and weakness and even fear. I don't want to take the time to slow down and fall apart. I just want to believe that it's going to work out, and move forward with life. All in all that is a good plan and I truly believe that it is part of why I'm alive today. At the same time, I'm starting to recognize it's flaws. My illnesses, pain, weaknesses, and fears may not define me, but they are part of me and have definitely played a huge role in making me who I am today. Maybe instead of denying these parts of me, I need to start owning them.

The title of this blog is All for Good. That came from my belief that God can use everything for His Good. I have always known that in some way for some reason and somehow, all that I have experienced and lived through (no matter how yucky) would be worthwhile because in someway Good would come to someone because of it. I have been content even peace-filled about that. Maybe there's even more to it though...maybe it's time to become a  little more accepting and own what I've been through. I've realized that by denying these parts of myself, I've been denying Good God has for me. I should be experiencing everything in my life~the good, the bad, and the ugly. It's all adding to the complicated mess of a project that I am.

I don't want to become a whiner, but I at least must learn to be real with myself. I can't continue to push past everything. This week was real and I need to be able to admit that it was unbelieveably tough. Each day was so packed with painful, exhausting tests and doctors relaying overwhelming news. Looking back, I know the only reason I made it through was because of prayers. This is the gift of my life...I am ready to own it. I am thankful beyond words for every test, doctor, nurse, and experience that I had this week. As hard as it was, I still loved being there because it was obvious that they ALL wanted to help me.

So I guess this means when I lay down tonight, I just might cry a little when I think about having to say yes to a third bone marrow biopsy. I also might chuckle when I think about my leg muscle cramping during the sleep study and I was afraid LaTasha, the tech would think I was thrashing about wildly on the video. Then I'll smile when I remember how Dr. Olson lit up and hugged me when she saw me in the hallway on Monday morning for the first time. And all of these emotions and more will be okay because they are part of me...christian, daughter, friend, asthmatic, dog lover, teacher, congenital heart disease, sister, undefined illness, althogether & more...the real me.

Day Five~down to the wire

I woke up very early today...well, who am I kidding, I'm not sure if I really even slept??? This is it. As much as I want to stay here forever, as torn as I am about leaving with results pending~this is it. Our flight leaves Denver today at 6:10 and I'm pretty sure that I'll be on it. It's down to the wire and I don't only feel that sense of urgency within myself, but I feel it coming from Dr. Olson too. My schedule is jam packed today with everything else that she anticipates needing in order to diagnose me and develop a treatment plan. I approached the day filled with the clashing combination of anxiety and hope.

We completed the rental apartment check-out list, loaded the car, and headed around the corner to National Jewish. My first appointment was in radiology for a neck CT. It looks like the VCD is still cutting off my airway according to PFTs. The CT will make sure it is VCD and not damage from when I was intubated in the past. (The scan was normal - so it is the VCD I'm still fighting)

Next I had a Nutrition consult. Every doctor I've seen this week has been extremely concerned about my weight loss. My current weight is fine, but the problem is that the weight loss has been unintentional. Weight is something that I have never been one to talk about or point out (loss or gain) - on myself or anyone else. I'm just very uncomfortable with the subject. I've never been a huge eater, but gained weight like crazy anyway when I was put on such high doses of steroids long term. When I was finally off them in November, I suddenly started losing weight. I assumed that was the reason. Apparently there's more to it than that. They think it's a combination of natural loss and a possible adrenal insufficiency. The nutrionist and Dr. Olson talked to me about taking measures to not lose any more weight - how bizarre. They even connected it to impacting my illness. I trust Dr. Olson so much, but this one is definitely harder for me to grasp.

With nutrition concerns spinning in my head, I sprinted upstairs to the MIDC (minimally invasive diagnostic center) for my cosyntropin stimulation test which is the adrenal insufficiency test. It involved an IV and a lot of down time. Nurse Jennifer was administering the test but to my delight Deb (from Tuesday) was training her! They had to draw blood, inject cortisol, and draw blood again periodically. As time passed they would come in and out of the room to chat as they had time. Deb shared stories about crazy tunnels beneath National Jewish that led across Colorado Blvd and creepy chambers in the old TB wards. Seth, one of the nurses I had back in April & May even stopped in to catch up. I just adore these wonderful people. :)

I met with Dr. Musani next, an interventional pulmonologist. This meeting was informational more than anything. Dr. Olson wanted him to talk with me about the possibility of bronchial thermoplasty. It's a series of procedures over a six week time period where the doctor uses heat to reduce the smooth muscle in the airways of the lungs. This reduces their ability to constrict causing fewer asthmatic episodes. The problem in my case is that it is best suited only for patients with severe uncontrolled asthma, but are healthy in all other ways. My heart, sinuses, and high eosinophil count rule out the possibility of this treatment for now - but he said it could be an option in the near future.

On to rheumatology with Dr. Maleki ~ I really liked her a lot. This appointment was very long. She spent most of the time going step by step through symptoms of an autoimmune disease that she and Dr. Olson are looking at as a possible diagnosis for me. Churg Strauss Syndrome is so rare it only effects 10 in a million people. It presents as late onset asthma, heart defects, tingling or numbness in the extremities, and rashes. Dr. Maleki isn't certain that it fits me because I don't have the rashes. She's waiting for the bone marrow biopsy for more information. She ordered a few more labs and sent me on my way for the final wrap up with Dr. Olson.

Day Four ~ still amazed

Bike day - da dun da dun dadundadundadun! It's been such a traumatic and paralyzing thought to me that it's as if the Jaws music is playing in the background!! I don't know how I could have been more prepared. I dressed in my favorite Heart walk shirt :) and marched on to the third floor. My muscles tensed as I neared the check-in desk. Erin, the technician was ready and waiting for me (of course)! We went to the familiar room and she asked me to sit in the blood draw chair - eek.

Deep breath - I know this will be different I thought to myself...a man whose name I honestly blacked out came in and started working on my wrist for the arterial line. He had no luck. He tried three times. He became quite frustrated with my tense, trembling muscles and finally gave up. Brenda, the respiratory therapist jumped in to give it a whirl. She gave it good digging - gouging try with great effort, but no success. Throughout the process I was hinting and blatantly requesting that they get Tom to do it. He seems to be able to work with me like magic. Finally, they gave in. They returned to the room with Debbie (Bowdy- my friend) & Tom. I was instantly relieved! He smiled at me, asked for a hand warmer, and cleared the other therapists from the room. He placed in on my ice cold wrist and hand and waited patiently while he chatted with us (mostly Debbie - I wasn't so chatty at the time). He turned my wrist and calmly went to work. He took his time and successfully set up the IV in my artery. After drawing the first blood gas he called the others back into the room. We were finally able to move on with the test smoothly. Ten minutes later it was over. The nightmare had ended! Erin said my exercise tolerance was exceptional considering my lung function. I decided to mark that in the positive column and leave the third floor as quickly as possible. ;)

I had exactly ten minutes to change my clothes and check in on the first floor for my ENT appointment with Dr. Ramakrishna. I was shocked when he walked into the room because Dr. Olson was with him. She said she was concerned about the role my sinus disease was playing in my illness and wanted to be part of the appointment in person. (Wow) The consult revealed what he believed to be a staph infection in my sinuses and that I'll need another sinus surgery in the future. This time they strongly suggested that I have the surgery in Denver with Dr. Ramakrishna. They explained that I need a surgeon that specializes in complicated cases and treats them on a regular basis.

Cardiology was the focus for the afternoon. I had an ECG (which is the new acronym for EKG) first. At three o'clock I met with my cardiologist, Dr. Fenster. He explained the results from the bubble saline stress test I completed in February. (We didn't get to meet at that time). My heart was in great condition. The repair appeared to be a complete success. There was some evidence of bubble transfer between my lungs though. He said this was really nothing for me to worry about though, it was more diagnostic information for the doctors. It simply reveals that I have severe lung disease of some form-which we all know. :)  Next, he discussed his and Dr. Olson's concern about my weight loss. He asked questions about my changes in taste since the heart surgery and let me know they are scheduling an adrenal insufficiency test. It will note any problems with my adrenal glands since the adrenal crisis which could be causing the unintentional weight loss.

At four o'clock I headed across the hall for an ECHO. Dr. Fenster explained that he ordered this ECHO to check for signs of eosinophils infiltrating the heart. He said he would review the test later this evening and consult with Dr. Olson tomorrow. 

As we left, I had a call from my scheduler, Jennifer, so we stopped by to see her. She let me know that Dr. Olson had just called her and ordered more tests and consults for Friday. She still has one more test to fit in and at this point I only have one hour left open in the whole day! That doesn't allow much room for compromise! I know it will happen though - I have no worries. What I do have is awe. I am so blessed to be in this place. This is my fifth separate visit to National Jewish and I am still amazed at how wonderful it is. How often do you go to an appointment with two of your doctors collaborating in the same exam room because they want what's best for you?

Beautiful Downtown Denver

Larimer Street

Day Three ~ A Biopsy to Remember (times 3)

The big day was here. I've read about bone marrow biopsies and heard horror stories from people who've been through it. For some bizarre reason though, this morning, I was okay. I wasn't freaking out, I was surprisingly calm. I knew it needed to be done, and I knew I could handle it. I was ready.

We headed over to the University Hospital and checked in. Of course they needed to draw more blood right away - and chose to draw from the exact same over-abused spot. Next I was called to the back. They gave me ativan to help me relax. (honestly I didn't feel like I'd taken a thing). The nurse practitioner, Christy, asked me to lie on the table on my stomach. I was surprised to find out that I didn't even have to change into a hospital gown. :) (there's a positive). Hank, the friendly and calming nurse put on some music. They rolled down the waist of my jeans and started cleaning.

She started by putting pressure on the back of my left hip to find a spot on the bone that didn't seem to be hitting a nerve. She numbed the surface then went deeper to numb the bone. She drew out the aspirate first (the liquid marrow) from the bone. Next she began to drill or dig out the core (the hard bone) section. I'll admit this was a bit painful. Pain was shooting down my leg and up my back as she loosened the section of the core. Sadly, the first piece was too small. She had to go in at a second site on my left hip and try again for a larger core. I just pushed through knowing it was all for good and better health will come for me because of this.

When she finished, she asked me to roll over. I was all bandaged up and applying pressure to stop the bleeding. Hank and Christy were preparing the core and aspirate to send to the lab. There was a pause and an uncomfortable silence between the two of them. The needle tool the extracts the core had broken and would not release the piece of bone marrow from the tube. They couldn't get it out! They called for help from three other doctors. After thirty minutes of diligent effort they through in the towel. I told them I was willing to go through it again for a valid test sample. With shocked faces they praised my strength and prepared the surgical table to start again. This time she went in on my right hip. The extraction was successful and the tool released the core with ease (thank goodness)!

In the end today, I suppose you could say rather than one, I had three bone marrow biopsies ~ and I made it through just fine. I pray the information gleaned from this test will provide rich answers in Dr. Olson's quest to help me. What an experience to remember!



Team of doctors attempting to save the core...




still trying...





one last idea...but no luck :(




The core and the aspirate ready for the lab!