a day of the unexpected

I spent the morning with Kristy. I filled her in on what happened Friday night. This triangle of doctors is so complicated~communication doesn't seem to flow! She did every test that she thought Dr. Thompson would want and ordered the EGD/stomach biopsy & high resolution chest CT both to be completed before my next appointment on June 7th. She insisted that I stay on 40 mg of prednisone daily until they figure something out. (Anyone who knows me, knows how much that order bothered me).

On my way to work I called National Jewish to leave a message for Dr. Olson as she had requested on Friday evening. I gave the nurse the details of the CBC, the angio-CT, and the plan for the HR-CT & EGD. Since we had just spoken at length on Friday, I didn't expect her to return my call today. I was simply reporting back results.

At the SBDM meeting I was crushed when Leigh Ann announced they had hired the 2nd grade teacher to replace me next year. I stepped out of the room to pull myself together. A minute later she came over baffled by my sadness. It was just a tough thing for me to let go of, I told her I just needed time. This whole thing has been so hard. I feel like I've been dangling by a thread while I'm hiding a huge secret from my team and crumbling on the inside. One day Leigh Ann would report to me that it looks like I'll be able to stay at Southern and possibly even work with the 2nd grade team and other days she says Lucy Overall will get the position and I'll be sent to another school. At this moment though, I wasn't thinking about any of that, I was purely overwhelmed with the stab of my classroom being taken by another teacher. My students, my room had just been given to some new teacher and I simply needed a few minutes to deal with it. She was convinced it was about the intervention position though, and began spilling her guts like an open floodgate. She told me I got the job as 2nd grade interventionist and would get to stay with my team. What?? Wow? How? When did this happen? Huh? I was so confused, thankful, shocked, and baffled... Is this all I had to do all along, walk away teary eyed to get her to man up and make a final decision about my job!?!? Then she cried and asked for forgiveness and a hug.

What a day!

Well, it wasn't over, much to my surprise, the phone rang at 6:15 and it was her....yes...Dr. Olson. She never ceases to amaze me. She wanted to know how I was feeling and to let me know that she and Dr. Katial had a long meeting about me this morning. ???? What?? I thought? Did I hear her right? Two doctors in Denver had a meeting about me? Why? She said they discussed what's been going on with me and think it would be a good idea to have me come back out this summer and start from scratch with testing so they can get to the bottom of things. They would like for me to see the rheumatologist there and have the bone marrow biopsy there as well. My mind was racing as she spoke. I didn't even expect a call, much less such a load of information. OK, okay...

I don't know anymore

I went to see Dr. Thompson Tuesday hoping for a plan and information from his teamwork with Dr. Olson, but there wasn't one. He said they hadn't had a chance to talk. I was pretty bothered by that, but decided to give him the benefit of the doubt. He talked with me more about how serious it is for me to stop teaching in the classroom. He also said he would do his best to help me finish this school year with the kids. He seemed to understand how hard all this is for me, and wanted to give me what he could for now. I have to continue taking high doses of steroids until they figure out what to do about the eosinophils & until I am away from the school environment.

Wednesday morning, (still on steroids & strong antibiotics btw) I woke with chest pains and a sore throat. That night I had a temp. :(  It wasn't horrible, but it was certainly frustrating. My voice was screachy and my chest continued to hurt...a lot. Wednesday and Thursday were long days with no breaks. Friday I called the doctor at 2:40 ~ my first chance. Kristy called back at 5:10 quite concerned that I had gotten sick while on the meds. She said to try and push through the weekend & she would see me in the office Monday morning because of my sickness and because they finally had a new plan. She said Dr. Thompson had finally talked with Dr. Olson, but he didn't call me because he didn't have my number and wouldn't be back in the office until June. She wanted me to just call Dr. Olson for the explanation of all they had discussed.

I was a bit frustrated with the lack of help I got from Kristy considering it was a weekend. I would just have to push through like she said though. I did call Dr. Olson immediately and she returned my call within minutes. She was instantly distracted by my voice and concerned about my current well being. Their plan included a chest CT and more lab work which she insisted be done immediately. She explained that with my eosinophils so high, my cardiac/medical history, & chest pains + feeling crummy while still on meds it was simply too risky to wait until Monday. The rest of the plan includes an upper GI, a stomach biopsy and a possible bone marrow biopsy. She said if the doctors here don't seem to be getting things figured out after these steps, she wants me to come back out to National Jewish again...

I just don't know anymore, I don't know how I feel, what I'm going to do, where I'm going to be...I've gone back to my old ways of lying to nearly everyone. I can't tell people how bad I really feel~I just do everything I can to fake it through the day. I'm done, I'm just done. I don't know what to do about anything right now...

thankful

Sometimes I meet people on this journey that I am immediately thankful for. You know, the kind of people you'll probably never have a chance to be friends with, or get to know on a personal level, but that you wish you could. Today, I had a follow up appointment with Dr. Hughes and he was interested in trying to help my eosinophilia. I was excited & welcomed any help or ideas. He introduced me to RaeJean, the office manager, who could meet with me and gather information. She was one of those special people.

For at least an hour, she and I sat in a tiny office while she scrolled through my entire (Central Baptist) medical history on a laptop. She was searching for any tiny loophole to use to make me eligible for the medication Xolair. Doctors have been trying to get me on this medicine for years and I have never qualified. You have to have severe asthma, a failed spirometry, and a IGe level above 30. (My level is 8). She didn't find an answer yet, but she did seem to form a remarkably strong bond with me. She was startled by some of the things in my history. As she read she would ask for details or praise me for my perseverence. I could tell that she was determined to help me. She even asked for Dr. Olson's phone number so she could get more information on my missing medical history. She promised to call me as soon as she had news to share. She made me feel like there is a chance again that something could help me. I am so thankful for RaeJean. She has already made such a difference in my life. :)

eosinophilia

Good news, good news ~ the fight was on this weekend! By the Grace of God my weak body began to make a come back and started fighting to recover! Whoo hoo! I'm still not there, but can already feel such a difference. I am finally starting to feel better. I will beat staph before round three is over. :)

At rehab today, Kristy rushed around the corner to check in on me. She was so excited to see that I was finally on the right track. It's so great to have doctors on my team who are so dedicated to making sure that I get better. She grabbed my shoulders and said, "Now Toni, PLEASE, just don't catch anything else for the rest of this week! You must let yourself get well before you start getting sick again."

I kind of laughed at first, then I could tell she seemed a bit upset. She lifted the papers in her hand and got very serious. My lab results had just come in and my eosinophil count had jumped from 1334 to over 3000. She seemed very concerned and frustrated. She said she had just gotten off the phone with Dr. Thompson and he was also concerned. He was planning to call Dr. Olson tonight to brainstorm next steps for me. She said they're at a complete loss as to what is causing the increase. I have to remain on the high dose of steroids until they figure something out. He wants me to come back in next Friday because he hopes he and Dr. Olson will have a plan by then.

I have to admit, I teared up when Kristy was talking with me. Honestly though, it wasn't because I was scared about what could be wrong. It was because I was exhausted. I'm so tired of information that leads to dead ends. I'm so tired of the weird results that no one knows what to do with. The rollercoaster is wearing me out. It's just getting so hard to "handle" the information like I want to. I wish I was a stronger person.

Fighting Staph

Sadly, Dr. Thompson was right.  I was getting a sinus infection. I toughed it out until it got the best of me a week later. Joelle talked with the doctors and they called in a prescription for Bactrim on Wednesday, April 20th. It hasn't worked in the past, but I thought it was worth another try. I was feeling pretty bad and my big Heart Walk was scheduled for Saturday morning! I was so determined to walk no matter how I felt! Unfortunately (& slightly for the best) it was cancelled due to thunderstorms. I spent the rest of the weekend fighting to feel better without much success.

That week I did continue to get worse and had appointments with both the pulmonologist and the ENT. Test results revealed that the infection was staph in my sinuses. My antibiotic was changed and other meds were added. They seemed confident it would take care of the infection. Other test results were also in. My eosinophils were higher than before ~ 1334 now but all the tests for what could cause the increase were negative.  Dr. Thompson was at a loss. He told me to stop taking Singulair because it has been known to increase eosinophils in some studies.

Today was my last day of Levaquin and my symptoms have been getting worse. Dr. Thompson is out of town, so I made an appointment with Kristy. She said the staph infection has spread to my lungs which certainly isn't a good thing. There were some patches on my x-ray and my lung function was below 40%. She prescribed a new antibiotic and increased the steroids. She also took some blood to check my eosinophils again and do another CBC. She's going to check in on me at rehab Monday. Hopefully these changes will do the trick, if not, she said the next step will be the hospital.

Here's to high hopes and much faith that some staph will be beat down in my body this weekend. :)

Tough Decisions

Friday, Dr. Olson called. She was the third doctor of the week to have a serious conversation with me about my job. Talk about a strong message. :(  All three of them talked with me about what working around children is doing to my health. How I am stronger in the summer and sick again each time I go back to work after a break. It's getting harder for me to fight off infection and viruses even with stronger medicines. Hearing it for the third time was tough. I've been ready to do so much ~ even pack up and move to Denver, but give up my classroom...my students...

Dr. Olson talked to me sincerely about it. She asked about other options in the school. She thought that an intervention type position would be the best option from a medical standpoint for my health. In that position, I wouldn't be exposed to germs and illness as heavily as a classroom teacher. I would only work with small groups of children at a time and in a more controlled environment.

Since this conversation, I've talked with Leigh Ann and have started the medical accommodations paperwork with human resources at central office. I know it's what has to happen because I can't physically continue to teach until I am better. Stacey, Debbie, Leigh Ann, & my family are the only people I've told. So many things have been running though my head. I feel like a liar each time I have to work on something for the 2nd grade team for next year. I don't know what is going to happen because there isn't an intervention position at our school right now. What I do know is that my heart is absolutely crumbling inside. I love things about my job that so many classroom teachers hate. I start crying each time I think about packing up my room, making classlists, or typing summer letters. I have dreamed of retiring as a classroom teacher. I feel like such an enormous failure in my life. It is so frustrating to not be able to take medicine and just get better. I look back now and wonder where I went wrong.

I still have to believe things are going to get better and I know this is All For Good or I wouldn't agree to it. I have to believe. I also know that I can and will be an amazing intervention teacher. The thing is, right now, it's tough, and it really hurts...

Let's run some more tests...

Friday - yay! I did make it through my first week back! I woke up feeling a bit chilled and achy, but blamed it on it being the end of a long week and moved on.  I left work at lunch because I had a pulmonology appointment/lung function tests with Dr. Thompson today. I felt exhausted and a bit congested so with an hour to spare before the appointment I went home and rested a while hoping to shake off whatever was slowing me down. 

My PFTs actually went pretty well! When I got back to the exam room and the nurse took my temp, she asked how I was feeling.  I told her I was okay, just feeling a bit drained and congested.  I had a low grade temp of 99.8.  I was so frustrated when she told me.  I had only worked 4 1/2 days and was getting sick again!  I'm so tired of handling this.  I stayed calm though, waited for Dr. Thompson, and heard him out.

He reviewed my kidney function tests first.  The aspirin is so important that we're not going to change anything for now.  He's just going to continue to monitor the kidney function regularly and make changes if things get worse.

He said it appears as though I'm getting another sinus infection.  He seemed as sad and frustrated as I am.  He apologized for not knowing how to help my sinuses and that the surgery didn't seem to help.  As far as the high eosinophil count, he discussed the possible causes and wanted to run some more tests to narrow the field.  He also wanted to check for some other diseases and problems that could manifest with pulmonary symptoms.  He ordered more labwork and said he would call me when it comes back.

Talk about perfect timing and dear friends though ~ this card from Linda was waiting for me at the end of the day. :)

A Long Year

Dr. Olson called tonight and I just broke down crying after I hung up the phone.  She has to have one of the most comforting voices ever.  She was concerned about a report from Dr. Thompson and wanted to check in on me.  She wanted more information.  Through our conversation I found out that my eosinophil count was up to 1000 at my last labs.  That was very disheartening.  I also just found out that my kidney function is elevated because of the high dosage of aspirin I'm on.  Of course she was on top of everything talking about possible plans of action.  She asked me to fax the CBC to her as soon as possible so she could see it for herself.  She also wants me to call her Thursday with the pathology report from the sinus surgery.  The last thing she said to me was, "there are good things we can still do.  I want to talk to you at the end of the week."

My first day at National Jewish was one year ago today.  That's kind of been in the back of my mind all day.  The memories of that first day and week have been popping in and out of my head.  I've been tired back at work this week, but hopeful because my peak flows have been strong.  It all came flooding to the surface when I found out about the eosinophil count.  I know it's not the end of the world by any means.  It just hit me that it's been a long year.  It's just been a long year.  I'm so blessed to have such amazing doctors on my side.

Just another surgery???

I guess when you've had open heart surgery every other kind of surgery should seem unbelievably minor.  In a way, that's true.  Of course I didn't think of this sinus surgery on the same level.  It wasn't the gravity of the surgery that I was concerned about.  I really wasn't even worried about the surgery, I was just disheartened about having to have another surgery.  I wanted it to be over with the heart surgery.  That was promised to be the big answer.  It's just been so frustrating to go through all of this.  I feel like I've been jumping through hoops, going to doctors almost daily, taking numerous trial medicines, and doing everything every doctor tells me to do just so I can go to the next appointment to have another procedure or test ordered.  All the while I am still getting sick and still feel just as crummy as I have all along.  I want to believe this surgery is the answer, it's just tough when there have been so many potential answers in the past year.  Don't get me wrong though, I'm not suddenly going negative!  I'm just explaining why this surgery has been a little more than just another surgery.  I do still have hope that one day I will be well.  I still believe in the ultimate plan for good ~ the thing is that I know it can be a rough ride.


I was surprisingly calm before the surgery.  I was actually quite proud of myself!  :)  It was supposed to start at 9:30 but they didn't even call be back for prep until almost 11:00.  Everything went smoothly.  Dr. Hughes came out and spoke with Mom afterwards.  He said the prayers worked because the bleeding wasn't nearly as much of a problem as he expected considering my dosage of aspirin!  That was wonderful news! 


Everything has gone as expected so far.  He operated on the sinuses around my eyes and forehead so that's obviously where most of the pain has been.  I have a follow up appointment with him next Friday.  Hopefully they'll have the lab results with the eosinophil counts by then.  Maybe this really will be the big answer...

A little pick me up!

Elizabeth's way of brightening my day! :)



It worked!!



I understand what you're saying

More appointments...today I had to miss school again because I had four separate appointments scheduled.  I can't let myself think about it though.  When I do, I get to where I can't catch my breath.  That doesn't help anything.  So instead, I just do what I have to do and push through, processing when I'm ready.


The first appointment was with rheumatologist, Dr. Jeffrey Neal.  He was very informative.  He explained all about how I am in the high risk catagories for developing an auto-immune disease.  Much to his surprise, I understood everything he was saying.  He wants to continue to monitor me every few months for the next several years.  He also discussed concerns & treatment plan about my bone density due to the years of steroids.  Our final topic was very intriguing!  He explained the possibility of using the drug methotrexate as a new treatment for my refractory asthma.  It is well known as a chemotherapy drug but in small doses has been used in patients for which other asthma meds have been unsuccessful.  Dr. Neal said he would work with Dr. Thompson to monitor the dosage of the drug.  The side effects could be intense, but it could be the right treatment plan for me.


From that appointment, I went to a very frustrating session with Wafa working on VCD.  She is wonderful, but since I am still recovering from pneumonia, I guess my vocal cords just weren't up to being challenged.  Sadly this was my last session with her because she's going on maternity leave next week.  I'm really going to miss working with her!


At the pulmonologist I learned that methotrexate is not something to get excited about right now.  Dr. Thompson was a bit leary about the strength and the side effects of the drug and said we should save it for a later option.  He agreed that it was something to keep in mind, but that we should wait to see how the sinus surgery works out first.  I understood what he was saying.  He also shared the results of the lab work they ran while I was in the hospital last week.  My IGg level was a lot lower than it was back in February.  This news is kind of a blow because we had all hoped it was going up.  I didn't qualify for the IVIg therapy.  All in all this means that I have an IGg deficiency but can't be treated for it.  That stinks.  :(  Dr. Thompson and Kristy were both in the room talking with me.  They said maybe it's time to change our expectations.  ~For example...my lungs are still recovering and I'm still a bit run down, but what if we called today's lung function pretty good??  I sure didn't like the idea.  Actually, just listening to them talk was crushing.  I understood what they were saying though.


I'm not giving up hope because my doctors are frustrated.  I know God is still in this and whatever the outcome, it will be all for good.  I understand that this is way bigger than me!

Time to Deal

Well, I did get released from the hospital Friday afternoon.  I spent the weekend recovering and working on report cards.  I'm still getting over the pneumonia so I've only been working mornings.  I did go to pulmonary rehab yesterday.  I was able to get through everything but was pretty beat when I left.  This afternoon I had the follow up appointment with Dr. Hughes, my ENT to discuss sinus surgery. 


I've known about this appointment for over a month now, but haven't been able to let myself deal with the thought of having another surgery even if it is just on my sinuses.  So, in my own special way, I have completely avoided thinking about it until today.  On my way to the office I really started to fall apart.  You would think that after open heart surgery, the thought of any other type of surgery would be cake but for some reason it's not working out that way for me.  My body is going into serious panic mode and I can't control it!  I don't even know what I'm scared of, it's just an unconscious reaction that I have to get a handle on.


Dr. Hughes said my sinuses were worse than he had previously thought and that the surgery was very necessary.  It would be a more complicated surgery than he had first expected because of the high dose of aspirin I am taking and the sinus problems he'll be repairing.  He also let me know that my recovery time would be longer because of my health complications and the aspirin.  The most important thing is that he believes it will help me to have fewer asthma symptoms and fewer infections in the future. 


Sometimes I feel so smothered by the things I'm dealing with lately that I start to doubt the good that I know will come.  It's time to deal with this surgery and take back the hope that I am going to be well.  Maybe this surgery could be the missing puzzle piece my body needs to fully recover.

Good Ole CBH

Friday, March 18, 2011

I must give a shout out to all the nurses, techs, and other staff members at Central Baptist Hospital!  You guys are remarkable!  As much as I detest being in the hospital, each caretaker that has walked through my door has been simply fabulous.  I have been treated with such a level of kindness, sincerity and competence!  It’s nice to know that they truly want me to be well and are on top of doing whatever it takes to make it happen – even when I’m not asking for anything!

Since that first evening, things have certainly settled down.  It has been a very different stay compared to ones from my past.  I have not been allowed to get up and walk the halls like before.  The nurse said it’s because I’m still too sick and it isn’t in the doc’s orders.  A couple of interesting things have happened too.  The first night my blood pressure kept dropping.  Several different times during the night there were two nurses in here a little concerned about it.  By morning it was up to 90/54.  It stayed in that range for next day or two.  The second night my IV went bad.  That was a nightmare I choose not to relive.  Last night, my BP finally went up to 107/59, but my heart rate decided to drop.  They were in and out all night having me talk and move around.  It stayed in the low 40s all night.  This morning it has been hanging stronger at 51.

Total hightlights have been visitors :). I am so blessed to have such wonderful friends! My family couldn't come up and I know it sounds terrible, but I'm glad they didn't. Really ~ I don't mean it that way!! It just tears me up inside when they have to leave their life & jobs & responsibilities & spend the money and time to drive all the way to Lexington to sit in a hospital room and stare at a sick person ~ not what you want your loved ones to go through. I'm glad they were able to stay in the comfort of home this time. All the while, I've not been forgotten :). The hospital is seriously not a place anyone should ever choose to "hang" - especially during March Madness, but my dear friends have been here with radiant smiles. Stacey, Melodie, Eleanor, Susan, Stephanie, Elizabeth, Debbie, Leigh Ann, Jenn, Melanie, and Doug all stopped in to show they care. Words will NEVER express what a hospital visit truly means. I would never expect anyone to visit, but the people who do take the time, are showing a true act of kindness that isn't forgotten! To top it off, my own personal superstar, Dr. Woody even stopped by to say hi! I was touched and even more impressed with her after the visit!

Yesterday, Dr. G, one of the partners at Dr. Thompson’s office, told me she would be sending me home this morning.  She emphasized the fact that I am still sick with pneumonia, but stable enough to continue treatment on oral meds at home.  I desperately want out of the hospital, but at the same time it bothers me to hear that I am still not well.  I just want to be well.  I’m ready for that.

It’s 10:35 a.m., I guess content for now would be a set of hospital discharge papers.  We’ll see what happens…

Sometimes I wish I didn’t know what I feel…

Tuesday, March 15, 2011

For whatever reason, the antibiotics and prednisone have suddenly decided to take a break and allow this infection to take over again.  I woke this morning feeling pretty rough.   My peak flows were low, but not terrible, the problem was the feeling I had – the feeling I knew.  It was pain inside my chest and back.  It was a familiar feeling that brought back very bad memories and instant frustration.  The thing was that today we had a much anticipated field trip to Safety City & it was already 4:45 a.m.  I’ve been doing everything I’m supposed to do according to every doctor across the country to “get better” so maybe I was just tired and I would feel better when the meds kicked in.  The doctors know what they are doing and they just told me yesterday that I’ll be okay I just need to give the meds more time.  So I tried to suck it up, buck up, and go do my job to create a wonderful memory for my students.

By 2:30 my suck it up was out of suction.  I was pretty positive that my morning pep talk did not hold true.  I called Joelle, my respiratory therapist to ask for advice.  She talked with the pulmonologists and they wanted me to come over immediately for a spirometry test.  As soon as my last student was gone, I headed to the office.  I was sure they were going to help me feel better this time.  When I went to hand the receptionist my co-pay she said, “Oh, the doctor isn’t going to see you.  They just want the spiro results.  You don’t have to pay! J”  I was crushed.  For the next forty-five minutes I waited with quiet teary eyes in the corner of the lobby thinking about how sick I felt and that they weren’t even going to help me, but just do a lung test.  I knew I wouldn’t even be able to do a spiro at the time – I was way too congested.  Nevertheless, I was there, and I try to believe that the best will come of doing what these doctors ask.

I was called back and failed miserably at the spiro several times while the lady politely told me that I was not doing a good job and need to think about it and try again – ha!  Finally, I coughed at a convenient time that made the result sufficient enough to take to the doctor.  Minutes later, Kristy, the PA, was in the room with me totally concerned.  HELLO!  I told the receptionist, the therapist, and the tech that I was sick – did they not tell you??????  My temp was 102.9 & the lung function was so low they insisted on admitting me to the hospital. 

By 10:00 p.m. I was in the hospital bed after a nightmarish experience with two lab techs digging in my arm for blood cultures, IV trauma, shots in the stomach, and more other meds/treatments than I’ve ever had in one hospital stay.  Dr. Thompson was treating me for the pneumonia I knew I felt this morning, possible H1N1, asthma exacerbation, and dehydration. 

I know now tomorrow will be a better day.

Sick Day

I did end up having to take a sick day - in fact I was out until Friday afternoon. Despite the way it started with the fever and chills, the biggest problem was how it effected my breathing. I was down big time. It hit me hard. I could barely speak a couple of words at a time.

I went to see Kristy the pulmonologist on Wednesday and she prescribed augmentin and put me back on prednisone. I was doing xopenex treatments almost constantly. I didn't want to go in the hospital. I even increased the prednisone on my own because the dose she put me on wasn't making a difference.

Finally, by the weekend I was doing better. On Saturday night I felt like the antibiotic was starting to work and I was getting better. Hopefully the next week would be better. :)

More about those titers

Sometimes timing is funny. Today during reading I started feeling bad. It hit me like a mack truck. I was chilled, achy, congested, and having trouble breathing. Luckily, it was almost 2 o'clock so I knew I could push through to the end of the day. Just as we were starting to clean up, my phone rang and it was Dr. Olson. She was calling about the titers that had been drawn. When I answered she immediated changed her train of thought asking what's going on? Who's on top of it? Who's taking care of you? What are they doing? What's the plan? I had to smile. I finally convinced her that it literally just hit me and I was going to call right after school.

Back to the titers, the results showed that I am IGg immune deficient, but she and Dr. Katial do not think IVIg is the right treatment for me. The news was a tough blow. I had been pretty hopeful that IVIg could be my white knight. Dr. Thompson later explained that IVIg is made from the proteins from the blood from 30 different donors and it's a gamble how the body will react to it each time it is given. He was concerned that my body would not respond to it well. He didn't think the risk was worth the possible benefit. What a bummer.

Pulmonary Rehab

Pulmonary Rehab is meant to help you rebuild strength after chronic pulmonary illness and to help learning coping strategies for daily living with those illnesses. I'm scheduled to go every Monday and Wednesday from 3-5 p.m. My respiratory therapist is Joelle. She is super sweet. One other therapist is working with a patient at the same time, her name is Johnna and she is fantastic too. I start out each session with a breathing treatment, then several breathing exercises to strengthen my bronchioles and small airways. I get a percussion massage which actually kind of hurts if I am sore from struggling to breathe. Finally we move on to stretches, exercise machines and weights.

One of the things that has been really interesting is getting to see how my blood pressure, heart rate, and O2 stats change with breathing and physical exercises. My blood pressure has been very low consistently. My heart rate and O2 have been very good because the heart surgery. Any time I've been sick or getting sick though, it shows quickly and drastically in my heart rate and O2 stats. My heart rate gets erratic and my O2 sats drop.

I've already learned a lot from this program and it's supposed to last 18 visits. I'm pretty excited about the time I'll get to spend getting stronger here.

titers please

Dr. Olson called after work and asked me to contact Dr. Greisner to order labwork to get the titers for pneumo & tetanus vaccs I'd had recently. This test would somehow show how severe my IGg immune deficiency really is.

I was intrigued by this phone call. It gave me hope that they were rethinking the IVIg treatment option. I don't know if it is right for me or not. I just like the possibility of an answer. I can't wait to see what comes of this.

things are going to happen now

After my return from Denver, Dr. Raghavan was immediately on top of scheduling everything Dr. Olson had requested. She worked major miracles with scheduling. I was set up for a sinus CT on that first Wednesday back. The next week I had appointments with the ENT, speech therapist, and pulmonologist back to back.

Dr. Hughes, the ENT spent a lot of time with me. He recommended surgery, but didn't want to go forward with it until he had the go ahead from Dr. Olson concerning my heart. He also performed a hearing test and results showed hearing loss in both ears caused by the infections.

Wafa, the speech therapist was fantastic. She was so interested in setting goals and helping me to improve my VCD. She was also interested in partnering with my speech therapist, Julie from National Jewish. I was comforted and relieved after our appointment.

Dr. Thompson, the pulmonologist talked with me about the events of the past year and seemed excited about the possibilities yet to come. He looked through my file of the tests that have been done and reports given. He agreed that I needed to begin pulmonary rehab and see a rheumatologist. He was looking forward to talking with Dr. Olson on the phone to discuss next steps and said he would get back with me after they spoke.

What a difference a month makes. I hope and pray these changes are real and right. I'm in this. I'm exhausted. I feel bad almost all the time. But I have a new spark of hope and I'm not gonna stop. I'm gonna continue to do everything they ask and jump through every hoop because I know it's all for good because God is in it with me.

Day Four

The big day - the results. I was super nervous. Mom had been really stressed and was not enjoying being in Denver at all. I didn't want to say anything to upset her or make her trip any worse. I had so much hope riding on getting some kind of solid answer - I was ready for something to wrong just so they could fix it. I just wanted things to get better.

A lot of the appointment is a blur to me now. I remember not being able to speak. Dr. Olson was talking and asking me questions and I just didn't have answers. Mom was getting very frustrated with me which of course was making me shut down more.

I do remember that in the end, she wanted more bloodwork and a sinus CT. Because of our flight, there wasn't time for the CT so she asked that I have it done as soon as I get back to Lexington. She also wanted me to get into see an ENT, a pulmonologist, a speech therapist, and begin pulmonary rehab as soon as possible.

I left feeling stressed out and frustrated with myself. I wanted a redo but it was too late.

Day Three

Today was a bit busier, but everything was still pretty familiar. I began on the dreaded third floor expecting to have a blood gas drawn. I was delighted when it was Tom that called my name. I was even happier when he took me back to the room and said we were just walking and skipping the blood gas!! Yay for good news on the third floor! To make it even better, he said that when I walked, my oxygen level increased - which was what it was supposed to do for once! More good news!

Down the hall I was placed back in the box for the breathing tests. Everything there went as expected. I had some trouble on a few of the tests, but Brenda didn't seem as frustrated with me as she has in the past. ;)

Next I had a chest CT and then a new test to me called an ENO - exhaled nitric oxide test. It checks for inflammation in the lungs, bronchioles, and smaller airways. It was a very short test and given in a neat way. I had to blow into a machine until a picture of a cloud smiled. LOL. Pretty cute - huh? It showed that my airways are still quite swollen or inflamed even with the meds I am taking.

My final appointment was with Julie in speech therapy. She was great. She reviewed everything we had done with Heather back in April. I talked with her about the voice therapy at UK and she understood why I didn't wish to return. She performed a search on her computer for me and found a list of great therapists in my area that I could call when I get home. Surely I'll have better luck with one of them. She also explainly what should happen in a therapy session for VCD. I left feeling better prepared to help myself.

Day Two

This was a short day with one really long test. I just had to go to radiology. We got to see Kevin again. He's such a fantastic person. National Jewish is a better place for having him. He took me back and helped me get ready. They were doing the MRA w/wo contrast to check on my heart and pulmonary veins post surgery.

Of course, the test took forever, but they said they were finally able to get all the angles they needed. Apparently everything went well. Dr. Fenster ordered the test, but is vacationing in France so Dr. Olson will go over the results of all the heart procedures with us on Friday.

Day One

One of the big reasons Dr. Olson wanted me back out here was to meet with immunology. I thought Courtney had said she'd worked out the schedule with Dr. Katial and that was who I was seeing today - he was in Hawaii though. I ended up seeing Dr. Mela, who I did meet last April and Dr. Weber. They were both very nice and thorough - I have to admit I was a bit disappointed though. :(

After a long consultation, Dr. Weber decided to double my aspirin dosage to 1300 mg per day for the next six months at least. He's hoping that will help get my asthma under control and we'll be able to drop back to 650 mg per day after that. He also ordered a full panel of labs to check all of my immune antibodies and such. They were very interested to see my IGg level since I've been off steroids a few weeks.

Later I had a repeat cardiac stress test with the agitated saline shunt (bubble test). I was so nervous about this test. It was supposed to be Wednesday morning, but they changed the schedule on me. I was still feeling pretty weak from being sick and didn't have much stamina yet. I was so concerned about not doing any better than I had done back in April.

Nikki and Rachel were in there to perform the test again just like before. That was very comforting. They could tell I was still a little under the weather, but said not to worry about it. I did all I could do and the test actually went okay. The good news was that now we could take our time getting ready on Wednesday morning. :)

Back to the Big D

Jenn took us to the Bluegrass airport Monday afternoon. Our flight was scheduled to leave smack in the middle of a huge nationwide snowstorm - seriously! And I had to be in Denver by 7:30 Tuesday morning - no excuses! :) I was determined that all would be well...an believe it or not...it was. Each of our flights were on time and flowed without a hitch. God is good! We landed in a blustery, snow covered Denver at about 9 p.m. mountain time. The temp was negative something insane ~ but we were there ~ luggage and all. Life is good.

We rented an Explorer at the recommendation of the attendant and were on our way. I was behind the wheel and miles from my calm self. The roads were treacherous. I mean are you kidding me? I expected Denver to be all over this snow removal situation. Oh my, that was one driving experience I NEVER wish to repeat. We had to stop twice to clean the ice from the mirrors and windshield. Later I discovered that's where I must have lost my precious sub-zero glove-lol-(nothing a quick trip to Target couldn't fix).

Anyhow - we did make it to the beautiful, warm hotel where we quickly unloaded and crawled into bed to rest up for the first day at NJ.

ear infections & flying won't mix

I'd been working like crazy all week to prepare for being out all next week. Without fail my to do list was still miles too long when I woke with crazy ear pain. Nooooooooo!!!! Everyone knows that ear infections and flying won't mix. I have four days until my flight leaves. I didn't have a temp when it was time to go to work, so I decided I had to tough it out until I could get into to the doctor. I just had too much to do and had already missed so much work. I called Dr. Raghavan's office during planning and lovely Andrea, the receptionist was able to get me in immediately after work. Yes - no sick day - now I just had to find strength to get through the day...

The doctor said I had a "raging" ear infection and a fever. She prescribed an antibiotic and provided some tips for easing the pain on the flight. She warned me that it would still be pretty rough. She also suggested that I take the next day and weekend off to get well before the trip. Ha, ha-ha, ha ha ha - are you kidding? Who has time to lounge around for three days before having a five day sub while you're in another state? Not me. I was just going to have to get well while working restfully. ;)

dr. woody the great

The fabulous Dr. Woody came through for me ~ or should I call her Ghandi?? That's who I felt like I was trying to contact when I called Central Baptist and asked to leave her a message!! They were completely baffled by my request. I lost count after the first five reconnections and new phone numbers I was given to try to make the connection. Finally it happened. I was told to call on Monday at noon and someone would page her with my number. Believe it or not, it happened exactly like that...finally :). She returned my call within minutes and was delightful. I began by sincerely thanking her for changing my life. We chatted for a few minutes and I could really tell that my words meant a lot to her. She gladly and highly recommended Dr. Chitra Raghavan in Beaumont. I trusted her completely and called right away to make a consultation appointment. I was doing this the right way this time. I wasn't taking anymore chances on doctors wigging out on me after they got in too deep. The sweet receptionist gave me an appointment for that Friday. I started praying for this new doctor immediately. :)

The appointment was better than I ever expected. She talked to me about my history and really listened to my concerns. She read Dr. Olson's entire report and agreed with everything. She was totally on board. She told me that any patient Dr. Woody cared enough about to refer to her was worth all of her effort. She examined me, listened to my lungs and even looked at my ears and throat. She noticed my lungs and ears were still not in top condition and made suggestions for the weekend. I was completely impressed. Before she left the room to copy the report, she hugged me and said that even though I may feel like she doesn't know what I've been through, she can see from the report that it's big, it's been tough, and she's going to do all she can to make things better. Wow ~ I teared up after she walked away. My prayers had been answered ~ I finally felt like I had a doctor. What relief.

To make a good day even better, as soon as I got home, Kaci, Dr. Olson's nurse called to check in on me. She and Dr. Olson just wanted to make sure that I was doing better so I would be able to fly on the 31st. Things were looking up on this sunny Friday.

a plan and a schedule

Dr. Olson did call as promised on Monday. She wanted to add some asthma meds and said I would have to talk with Dr. Caudill. I was so done though. He had crushed me and made it so clear that he wanted nothing more to do with me. At this point, I didn't have a choice, I needed a prescription and he was my doctor. She knew I was apprehensive and wanted to talk with him about her plan anyway. She spoke with him on Tuesday and called me again on Wednesday. She said she'd shared her ideas. She asked him to see me as soon as possible to check my lung infection and start the new meds. She also let me know that they were working on my schedule and she hoped to have me out there at the first of February.

I emailed Dr. Caudill and he replied that he didn't see a need for an office visit and he wasn't sure about the new meds. On Friday I got a call from the pharmacy that they had been called in. That email sealed the deal for me. I was ready to look for a new doctor. I decided to contact Dr. Woody (my hospitalist from CB) and ask her for a recommendation. I couldn't depend on a doctor that wasn't interested in treating me or working with other specialists.

Courtney, my scheduler from National Jewish called on the 13th with an update on the process. She called on the 18th to let me know that I was scheduled for the first week of February. I would be seeing Dr. Katial on Monday the 1st and Dr. Olson on Friday the 4th. Other tests would be scheduled in between.

Another Weird Therapy Appointment :/

I went back to voice therapy today expecting to work on strategies to help me when I'm having trouble and learn some new exercises. Much to my surprise (and discomfort) that didn't happen. The doctor asked me how I've been and noticed I was a little wheezy (which could have been great for practice I would think). After I answered, there was a long quiet and awkward silence. I decided to mention that I'd been practicing the breathing exercises I was taught by the therapist at National Jewish. She said that was good, wrote something on a paper, and asked if I'd like to come back in two weeks.  What??? Why would I come back? We just stared at each other in bizarre silence? I paid a $20 copay for a 12 minute twilight zone episode. This experience was just too weird for me. I found it funny to talk about, but not exactly beneficial. I guess I paused a bit too long because she said, "well, let's do three weeks instead". Great, that sounded like it just might interfere with my trip to Denver and I'll have to cancel ~ I agreed immediately and left!

frustration, confusion, and comfort

It's been a pretty frustrating first week back. The fevers have continued throughout the week and now my left ear has started hurting. I've been emailing Dr. Caudill and he has seemed indifferent about treating me. He finally offered to see me this afternoon to take a look at my ears. I've also emailed him about the December report from Dr.Olson. It came in last week and I had some questions about some of the recs she'd listed. I wondered when and if he was wanting to start the plan. He replied that he didn't intend to start anything at this point. I was beyond frustrated. What happened to the doctor that was so interested in helping me? The doctor that promised to work with the doctors from National Jewish and continue the plans they developed to help me get well? I didn't understand what had changed? He was suddenly so different. He was acting like he didn't want to be my doctor anymore. I can't deal with this - I just want a doctor - a good doctor.

I was even angrier when I left his office. He only looked in my left ear. He said, "Yep, it's infected too, keep taking the antibiotics. You're lungs don't sound too good either." He didn't even bring a stethoscope into the room with him. He couldn't have cared less about treating me. The only good thing that came from the appointment was that I got him to write a letter so I can have donated sick days at work. Before I left he told me he thought it was time I start accepting that this is how things are for me. I was crushed. Only one month ago Dr. Olson was preaching the exact opposite to me. How could he say such a thing? I left with no hope of feeling better physically and feeling more frustrated and confused than before. Maybe he was right.

Just like a gift, the phone rang at 6:20 p.m. It was the comforting voice of Dr. Olson. She was just calling to check in on me since I had been sick when I left Denver back in December. She could immediately tell that I wasn't well and could hear my wheezing. I quickly updated her on the past month and she was so disappointed. She had been so hopeful about things turning around for me. The news that my peak flows had been below 250 since December was appalling to her. She insisted that I needed to get back out there for next steps. It couldn't wait for April as we had previously planned. I was so caught off guard that I was speechless. How could I afford another trip now? But at the same time, what relief, I had to go, could another trip make a difference? My head was spinning. Her immediate advice was to get to a UTC to change the antibiotic since the ear infection had spread, get a chest x-ray to check for pneumonia, and start prednisone to get my peak flows back on track. I couldn't get on a plane until I was stable.

She comforted me and told me that it was possible for me to feel better than this. I just need a doctor to be on board with the plan and on top of things. She promised to talk with me Monday to discuss the x-ray results and her plan. What a rollercoaster! I just want to be well - I just want to be able to work without missing days. I am so thankful for this doctor in my life. This fight is wearing me down and she is truly a gift from God. I pray that answers and relief comes soon.

So Thankful for the UTC

This was the 4th day on the z-pak and it didn't seem to be making a real difference, but I wasn't feeling terrible. My ear was bothering me a little more when I woke up this morning though. I just shrugged it off. After church, Stacey and I met at school to work on new reading groups and get things ready for the week. As we were talking, apparently I was holding my right ear. She asked if it was hurting, and realized what I was doing. It was hurting quite a bit more. I decided to focus on the things that had to be done first.

Within the next hour I was in full blown ear pain. I finished up my work and headed home. By the time I got home, it was 4 p.m. and I felt terrible. I started looking up local urgent treatment centers and all of them closed at 4 on Sunday except the one on Dove Run. I didn't want to go there at all. I waited another hour and the symptoms only worsened. I had to go.

At the UTC the doctor said I had a temp of 103.6 and the worst inner and outer ear infections he has seen in an adult! He was also quite concerned about my wheezing, but I convinced him that my regular doctor would treat that later. He sent me on my way with a new antibiotic and ear drops with a promise that the fever and pain would be gone by Monday.

Monday...the first day back to school in fresh new 2011, and I would once again, be absent. When will things change?

An Odd Check-up

Today was my check-up appointment with Dr. Caudill. I was glad it was scheduled because I haven't been feeling well. My sinuses have been bothering me and my ears have been hurting off and on. Dr. Caudill seemed very different though. It was as if he wasn't interested in treating me. He just recommended that I start one of the z-paks he had previously prescribed if I felt like I needed it. He didn't even look in my ears. I was out the door almost immediately.

I'm not sure what was going on. Maybe he was preoccupied. I did decide to go ahead and start the antibiotic because I was showing signs of infection and wanted to be well before school begins again on Monday.

By the way, happy end of 2010!!!  May health, strength, and happiness fill 2011!  :)

Voice Therapy

One of things Dr. Olson had strongly recommended was therapy for my vocal cord dysfunction. There was definite improvement since she first diagnosed it in April, but she said it is still cutting off my airway too often. I need more help to get it under control. Dr. Caudill referred me to the voice therapy clinic at UK.

Today was my first appointment. I met with Dr. Rita Patel. She talked with me for a short while about my history and what had been done at National Jewish. She did a laryngoscopy to prove the dysfunction. Afterwards, she reviewed the results with me. The visit was kind of awkward. I felt quite uncomfortable there. I wasn't feeling well, so maybe that was the reason, but something just wasn't right. This was nothing like my visits for VCD with the therapists at National Jewish. She wants to see me again in two weeks, so surely it will seem better then.

you need glasses my dear

It has been clear (ha ha) that my vision has been getting worse. Mom used her magic to get me an appointment with Dr. Talley before I had to head back to Lexington for more appointments.

He examined my eyes and compared the results to those from June. The cataracts are worse and have caused me to be near-sighted now. He said this is common for cataracts. He had expected the deterioration to stop because of the heart surgery and stopping the steroids. Unfortunately, upon further digging into my medical history he noted that I was on such high doses of steroids for so many years, he now expects the deterioration to continue for a while before it slows.

I was completely bummed about having to buy ~ and ~ wear glasses. :(  He said they'll help most of the problems with my vision, but won't correct the blurry patches caused by the cataracts. Those will only be corrected with surgery. He said I should be eligible for surgery soon if the deterioration continues at this rate. sigh...

The Reality Check?

I woke to a rush of emotions and a flood of thoughts about what had happened in Denver. I headed to Dr. Caudill's office feeling hopeful about all that Dr. Olson had said.

A student met with me first and said that Dr. Olson had called Wednesday evening and spoken with Dr. Caudill for over an hour. He even had more than a page of notes from the conversation. I felt good about that. Things would be consistent.

The doctor came in and the vibe wasn't quite the same as it had been even a week earlier when I had been there. Some of things that Dr. Olson had made seem crucial, he seemed to be blowing off. She was insistent on my having a pulmonologist and when I asked him about referring me he said well you just saw her, so we can get that into the works soon. ??? huh??? Well, okay, I guess he knows what he's talking about. He did just talk with her last night, right? He also didn't examine me. I was actually there because I was sick and he didn't listen to my lungs or anything.

I left a little perplexed. He seemed on board...yet he didn't. Maybe this was just a reality check. Maybe I was over analyzing things because less than 24 hours ago I was with the superstar of all doctors and now I'm just with a good doctor. Could that be the explanation? It has to be it. Surely he isn't really blowing me off - or blowing off the things she's suggested after he promised to work with her...

I don't know, I hope I'm just tired and sick and over-thinking things. Dr. Olson is right, things are ready to turn around.

Day Three ~ I'm not even supposed to be here

We left NJ Tuesday afternoon and decided to try out the Cherry Creek shopping area. We were both excited about touring the pretty shops at Christmas time. As the day went on, my slight stuffiness/wheezing seemed to worsen. I could tell I was getting sick. It hit pretty hard that evening and I woke with a fever during the night. My peak flows plummeted and I felt terrible. What bad timing.

It was pretty hard to hide the next morning. We had to stop by National Jewish to drop off something on the way to the airport so Debbie insisted that we just ask to see Kaci and let them know how I feel. I was mortified. I wasn't even scheduled to be there today - I couldn't bother them. Dr. Olson does bronchoscopies and big procedures on Wednesdays I knew she'd be busy. She didn't have time for me to bother her. I refused. I would be just fine. I could handle this.

Well, Debbie doesn't play by my rules, while I was turning in my labwork, she told Janie the concierge that we needed help. By the time I was back, I was being hussled to a room and Dr. Olson's footsteps were clicking down the hall. My heart was racing. My eyes were tearing. I HATE bothering people. She walked into the room, "Toni, what happened?" she said in the calmest most comforting voice known to mankind. "This is not okay! You need help. You can't get on a plane like this. I'm going to help you." That was followed by the fastest series of the most in your face, I'm gonna make you better right now treatment I've ever had in an office.

She came back to check in on me and gave me a huge speech. She told me that when I came to her in April I was one of her sickest patients and I didn't even know it. I was okay with things just coping and had actually learned to cope too well. I have been through some of the toughest, most painful tests and surgeries and taken it all. I am an unbelievably strong person and I deserve better. She's not going to stop until it happens. She was certain that if I could get a doctor on my side and everyone on the same page that things would turn around for me. If they don't she had some other ideas and could get me back out to Denver in April. For now though, she was going to call Dr. Caudill and talk to him and wanted me to see him Thursday morning if she could get me well enough to fly.

Wow - what a lot to soak in. I was barely at her cut off in time to leave for the airport so she relented to let me go. She made me promise not to board if I got worse before take off. I have to admit, I did get worse again, but of course I wasn't about to stay behind and go to the ER. I'm sure Debbie was stressed a bit by me, but I knew I would make it. Bruce picked us up at the Bluegrass airport at midnight and I went straight to bed with a thousand thoughts swirling in my head.

Day Two ~ On the right track

Dr. Olson reviewed the good news from the pulmonary tests and pointed out how much stronger my basic stats are now. We discussed the bumpy Fall I've had and decided it was mostly due to lack of medical care. With a new doctor now, hopefully that would change. She took all of his information and said she would contact him to get him up to date with everything.

When she examined me, she noted I was a bit stuffy and wheezy, but nothing significant. We were all pleased with the visit and left with a solid plan.

Day One ~ An Emotion Overload

Wow - talk about memories being awakened by environment! My first appointment was on the stinkin' dreaded third floor. Probably not the best way for Debbie to have to start out at National Jewish (haha). We walked through the elevator doors, I checked in and we sat down. I was there for 30 seconds and suddenly overwhelmed with memories and emotions. Tears started flowing uncontrollably. My hands were shaking and a hundred images were running through my head - the bike, the blood gases, the walk, the box, the sighs, the faces, everything. I couldn't do this again. What was I thinking? Debbie was great - she reminded me that this time would be different.

A kind voice called my name - we went to the box. She chatted with me about holiday events in downtown Denver as we glided through each test. I was completing the tests without frustrating her - what a relief! It sounds ridiculous, but it was huge. There was even noticeable improvement in my VCD on the spirometry graphs. I was delighted.

Feeling a tad more confident, I headed back to the waiting room. Debbie was jubilant! Another kind voice called my name - it was Tom. He took me to the room to draw a blood gas. Before he started though, he talked to me. He warmed my wrist and said he read my file and knows what happened before. He was beyond thoughtful. He was outstanding. He got it on the second try. It was 92% but increased when we walked. That was good news. We were 2 for 2 so far.

We headed over for several scans in radiology and another six minute walk test on the rehab floor. It all went smoothly. The final test was an ECHO with agitated saline (bubble test) in cardiology. I was excited and nervous about this one. It would show if the hole was fixed or not. I'm certainly no doctor or technician and this whole world of cardiology is completely new to me. I have learned how to watch the bubbles in the heart though. I know if they stay on one side or shoot through to the other. I was so anxious as he pumped the first burst of bubbles through. It was perfectly clear. I was so excited. I asked the technician instantly - it looks good - right??? Of course he couldn't answer me, but I knew it did. I was beaming inside. He told the nurse to give another burst. This time it was different, bubbles went everywhere. I was crushed. I knew something was still wrong. The hole must still be there. I didn't say anything. I just waited and watched. I could see it in the technicians eyes too.

We left National Jewish and Denver as we knew it for a wild road adventure to Highlands Ranch. I had an appointment at the National Jewish Community Clinic with Dr. Fenster. We felt like we were taking a road trip and should have stopped for supplies! It was certainly a nice little escape for my mind to shift focus before the visit.

When we finally found the place, Dr. Fenster revealed that there is still a hole in my heart. The news broke my heart. In my mind, after all that had happened, it was supposed to be fixed. It was supposed to be over. A few tears trickled down my cheeks. I think his heart broke a little too. He immediately started consoling me and told me that it wasn't a big deal. He said the surgery was so huge and so complex that some imperfection was expected. This was something minimal. They could watch it and monitor it and with proper medical attention never do open heart surgery again. If it worsens it could be repaired through a heart cath. It's possible it could repair itself in time.

I could hear him and I understood him. On the surface I even accepted that it was minimal. On the inside though, I was crumbling. I was scared and frustrated and confused. I had to be strong though. I had to move forward.

As a great distraction, after dinner we took a side route home. We went sight seeing through downtown Denver to look at Christmas lights. This is one of the federal buildings. The entire city was an absolute winter wonderland. I was disappointed that I didn't have my camera with me to take better pictures.

The 2 Week Mark

It seems as though my body has a two week limit for wellness. Dr. Caudill is getting to know my case. He has most of my records from Dr. Greisner, Dr. Myers, and National Jewish now. He's decided to start seeing me every two weeks to try and stay on top of the infections before they get the best of me.

Somehow, sickness hit between appointments and got me down again. He took action quickly though. He ordered labs and a chest x-ray. I was very nervous about how he would deal with my lung function. I was so scared of going back on steroids. He had a confident plan though, he said as long as prednisone was prescribed in short bursts and stopped, I would not suffer the ill effects. Sadly though, I was quite sick and did miss nearly a week of school with this round.

Hopefully we would prevent the next one. He wanted to see me again before I was scheduled to leave for Denver.

NO MORE STEROIDS ~ YIPPEE

The day has finally come!!  Today was my follow-up appointment with Dr. Caudill.  He checked my cortisol level and found that my adrenal glands are finally awake!  Yippee!  I am finally, finally done with steroids!  After more than 12 long, terrible, side effect infested years - it's over! 

This milestone hits just 24 weeks after my heart surgery!  What a great day!  This is big, just really special and big for me!  :)

NO MORE STEROIDS :)

Just one of those days

So it just happened to be one of those rough days.  It was one of those days that I was having a tough time breathing.  I had had several breathing treatments that weren't really helping and neither were my inhalers.  During planning I had to meet with Leigh Ann to talk about my evaluation lesson.  It was impossible to hide my shortness of breath because I couldn't even speak in complete sentence.  She was very concerned and finally insisted that I go home and call the doctor.  The big problem with that was that I didn't know who to call.  I felt like Dr. Myers didn't care, Dr. Greisner didn't know what to do with me anymore, and I neither did Dr. Foxx. 

As I was leaving, Debbie met me in the parking lot.  She was very concerned and could tell that I was just done.  We tried to call a few of my doctors with no luck.  The receptionist at Dr. Thompson's office completely blew me off on the phone.  Finally, she called her brother-in-law, a doctor at UK.  He was able to work me in that afternoon.  Debbie offered to pick me up at my house in an hour.

Dr. Caudill listened to my history and promised enthusistically to work with my doctors from National Jewish to help me.  He said his specialty was coordinating multiple doctors for patients and keeping everything in order so that nothing contradicts.  He ordered a chest x-ray and labs that day and started antibiotics.  He seemed like a dream come true!  He even wanted to schedule a follow-up appointment to make sure the antibiotics had worked and I was feeling better!  I felt like a huge load had been lifted from my shoulders.  Now I could focus on feeling better and getting back to work!

Try, Try Again

After a little over a week back on a higher dose of steroids, I was back to myself!  I did wake up pretty sick on the 6th with a fever and congestion.  Luckily it was the first day of fall break.  I went to see Dr. Greisner.  He gave me an antibiotic and I kind of got the vibe that he didn't want to do more than that.  Anything that I asked about Medrol he deferred to Dr. Myers and wouldn't even discuss. 

I went on in for my scheduled labwork to check my cortisol level on October 7th.  I hadn't heard anything by the 12th so I called the office.  Finally, after not being able to get through on the phone, I decided to go over there.  Debbie drove me over and waited while I ran up. 

The nurse gave me a post-it note that said "Cortisol level still low but better. Go ahead and start taper again."  Call me crazy ~ I wanted off steroids more than anyone would ever understand, but just a week earlier, this same doctor told me I was near multiple organ failure!!  Now, with no check up or follow up scheduled, no plan of action, now, with a post-it he tells me to start the taper again!!!!  I felt sooooo alone!  I felt like no doctor was willing to treat me or take care of me.  Nobody wanted to deal with the complications so they just passed them off assuming I would explain it to the next doctor.  Oh I was getting so frustrated!  If only I lived closer to National Jewish!

Ultimately, my desire to be off steroids won over my fear of organ failure or lack of medical care.  :)  I began the taper and basically decided to just take care of myself until I found a doctor that would tell me what to do.

Something's not right...

September was simply a rough month. :(  I went back to the doctor on the 18th because I was still not getting better and was having some other problems due to the medicine.  This time I went to the Baptist Works Clinic because I couldn't get in at Dr. Foxx's office.  Again, I had to tell my entire fascintating history.  The doctor gave me more medicine and assured me that I'd be all better with a bit of rest.

Besides not being able to get well , I was also very emotional.  I was crying constantly.  I was not myself at all.  I didn't know what was going on or who to talk to.  I had heard about people have a tough time emotionally or a sort of depression after heart surgery, but I was nearly four months out???  I was embarrassed, confused, and very frustrated.  I felt like everything about me was completely falling apart.  Things were not good, and it was getting harder to pretend like they were.

I was at the end of my rope and had to do something.  Whatever was wrong was only getting worse.  Stacey talked me into calling the therapists we have available for us through work.  I met with Jan on Wednesday, September 29th at 5:00 p.m.  I shared my story and my concern for what was going on.  She was intrigued by what I had been through.  She said she was impressed with my strength and I was just fine.  I should consider writing my feeling down from time to time and we could make another appointment for 3-4 weeks that I could later cancel if I felt better. 

I left that office feeling worse than when I had arrived.  I felt like I was falling apart when I arrived, but I left feeling like I had completely failed therapy.  How could she think I was okay??  I was so far from okay!  It was taking everything in me to hold myself together to focus on anything anymore.  I hurt all over.  Something was not right and I didn't know what to do.  I was devastated.

Thursday, I decided to email Cathy Christopher for advice.  She replied almost immediately telling me to contact my doctor or get to the ER because it sounded to her like symptoms of adrenal shock or adrenal crisis from the medrol taper.  I was stunned!  These were not symptoms Dr. Myers had said to look for!  I called Dr. Greisner because Dr. Myers' office was already closed.  He called Dr. Myers and they had me immediately take a dose of medrol.  I went for labwork the next morning which revealed I was near kidney failure and all kinds of other terrible things like liver and even heart failure!  They put me back on medrol and I was back to my stable self :) again in just a few days!!!  It's just unreal what the body learns to handle and how it handles it!

Needless to say, my dream of getting off steroids by the beginning of October was squashed with this little crisis.  I was pretty heartbroken by the whole thing, but what could I do.  I had to believe that one day soon it would happen.  I would be able to stop taking steroids.  After all of this, it had to be possible.

The New Sick?

I had been feeling worse each day for about a week until it hit full force on Wednesday evening.  It happened.  I was sick.  The big question was could this be a new sick?  Would I heal faster?  Would weaker antibiotics work on me now?  I already had an appointment with Dr. Foxx about my eyes on Thursday.  I was still having problems with periods of blurry vision.  Instead of making an appointment with Dr. Greisner too, I just decided to let Dr. Foxx take care of my sickness too. When I arrived, Dr. Foxx wasn't there and they placed me with one of his partners, Dr. Hayslip.  I was okay with that, but had to explain my entire history to her before should could treat me.

As far as my eyes, she ordered an MRI and diagnosed me with ocular migraines.  She prescribed Topamax on an increasing taper.  She said it should stop or at least significantly reduce the blurry vision.

For the sickness, she said I had bronchitis and a sinus infection.  She felt like a weaker antibiotic would do the trick and prescribed Bactrim.  She said I should feel much better by Friday afternoon.  If not, I should return to the office Saturday morning.

Saturday morning I woke with a fever and my symptoms were worse.  It was as if I had not been taking any medicine at all.  I called the office and went back in as Dr. Hayslip had suggested.  Of course, it was another different doctor who I had to explain my entire history to all over again.  He switched my antibiotic and increased my steroids.  I was hoping this would do the trick.

Time to taper the 'roids!

Oh what an exciting day!!  Dr. Greisner had made an appointment for me with an endocrinologist to help get me off steroids!  The day has finally come! Things have still been good.  I've just started to feel a bit like I might be getting sick.  I'm hoping things are different now though - that my body is different and so I'm thinking positive!  (or in denial)  Either way, things have been so good, I want to believe that my new improved body is a better fighter than my old wimpy one!  Other quick news - I am no longer taking Pulmicort or Vospire for asthma!  Yay!

My appointment with Dr. Myers was more like a meeting.  Dr. Greisner had already sent him tons of infomation about me.  We went into his office instead of an exam room.  He explained the danger of tapering or stopping steroids especially after long term use.  He wanted me to know what to look for so I could call the office if I had any of the symptoms.  They would immediately order bloodwork to check my corisol levels and adjust the taper accordingly. 

I was intrigued to learn that for a year after stopping the medrol, I would have to have what was called a stress dose of steroids in any type of emergency situation.  The body is such a peculiar thing!

His plan was to taper the medrol so that I would be completely off by October 8th!  I was elated!  I couldn't believe it could happen so quickly!  Dr. Myers was so positive about everything and so excited about my story.  He said he just knew this would work out for me! 

How's my heart, doc?

Today was my much anticipated appointment with Dr. Bricker to find out how my heart has been healing.  I rushed out of school at dismissal to make to the Gill Institute at UK hospital on time.  I had to park at the hospital garage and walk over which was quite a feat!!  Brandi, the nurse checked me in and rushed me over to the hospital for and ECHO.  I was there for quite a while because they had some trouble getting the pictures they wanted.  It was my first ECHO since being in Denver.  Everything was fine but it did bring back a rush of memories.  It was pretty painful when he was pressing over my sternum trying to get certain angles for the pictures.  He wouldn't tell me if anything he was seeing was good, bad, or indifferent of course. 

When they finished, I rushed back to the Gill where Brandi and Dr. Bricker were the only two souls around.  Everyone else was already gone for the weekend.  Dr. Bricker talked with me for a long time about how impressed he was with Dr. Campbell's work on my heart and the future.  He said because of my condition, I could need a pacemaker years down the road, but not to worry now.  Everything was looking good for now.  It seemed to be healing nicely.  I could begin increasing the amounts that I am lifting and working on strength training.  I was even allowed to start mowing again!!! I was very excited!  This was good news!

The Dream is Real!!!!

Life is good! Life is so so good! I've been back at work for two weeks now! I can truly say I am breathing! I am breathing better than I have ever been able to breathe for as long as I can remember! I didn't have any idea it was possible to feel this good, this alive! I had no idea I felt that bad before honestly. Now I know how bad things were. Gosh, I don't even want to think about that now because things are so so good! I can breathe! :)

Today is Mom's birthday and it sounds quirky, but part of my gift to her (& the part that meant the most) was telling her that I put my nebulizer away! I've had my nebulizer (breathing machine) plugged in beside my bed for twelve years.  In those twelve years, I could probably count on my two hands the number of nights I haven't had to wake up and use it multiple times.  Today, I unplugged it and put it in the closet because I don't need it anymore!!!!!!!!  What a miracle!

I am still on medrol (steroids) and all of my other asthma medicines.  Dr. Greisner is talking about stopping them gradually very soon though!  In fact, I have an appointment with an endocrinologist next week to discuss getting of steroids.  It's apparently a very serious process since I've been on such a high dosage for so many years.  The good news is that it is all actually becoming a reality! 

As far as the heart surgery, I continue to get stronger daily.  The past week and a half has truly been fantastic.  I have had the least amount of pain and have been able to do more.  I also have an appointment with Dr. Bricker this week.  I'm very excited to find out how my heart is healing from the surgery. 

The dream is finally real!  I feel great!  I can breathe! This is good!

Cataracts, really?

Since I was at Mom and Dad's recovering, Mom got me an appointment with her eye doctor, Dr. Talley to see what was going on with my eyes.  I have patchy blurry vision which is much worse at night.

After a long examination Dr. Talley sat down to talk with me.  He explained that oddly enough, I could still achieve 20/20 vision with effort but the bad news was that I had cataracts in both eyes.  He seemed hopeful that because of the surgery and the corrected blood flow, they shouldn't get any worse.  He said they were caused by long term high doses of steroids.  When and if they do worsen, I can have surgery to correct them.  For now, I'll just have to deal with the patchy blurry vision. 

He explained that the "episodes" of blurriness are a separate problem.  He suggested a visit to my primary care doctor to discuss that concern.

I have to admit, I was pretty bummed that afternoon about the diagnosis.  I had learned that one of the side effects of steroids was glaucoma or cataracts.  I guess I was hoping that there was at least a couple of side effect from the steroids I had avoided.  At least it is better to have cataracts that glaucoma I suppose, but it is still a bit of tough blow right now.  I just need to take a breath a let this information soak in.

Welcome to UK

This was the big day to meet my new adult congenital heart specialist at U.K.  I felt kind of weird going to the appointment because it was in the pediatric department.  Dr. Bricker is a pediatric cardiologist who has an interest in adult congenital cardiology.  He and one other doctor work together to run an adult congenital clinic once each month at the Gill Heart building connected to the hospital.  It is such a small area of cardiology that it is hard to find a doctor that practices adult congenital defects full time.  Dr. Bricker was so intrigued by my case that he didn't want to wait until the next clinic to meet me.  That's why he was seeing me in the peds unit so soon after my return from Colorado.  It all worked out nicely for all of us!

Overall the meeting went really well.  He spent most of the time just talking to us and getting to know me and getting to know more about my history and my case.  He talked to Mom a lot and comforted her about the fact that the congenital defects were not caused by anything she did or didn't do during pregnancy.  She was relieved!  He gave me a card with his home and cell number in case anything happened at all.  He said I would need to call him anytime I was sent to the ER for now on because doctors would be so fascinated by my story that it could hinder decisions about the immediate problem. 

He clearly defined my restrictions for recovery which were very limiting.  One thing that was repeated by nearly every doctor was that my chest/sternum would likely take longer to heal because of the amount of time and dosage of steroids I had been taking.  He gave me a general timeline saying that by August I would feel stronger but still get winded when I went back to work.  November would be wonderful - I would feel stronger and better than ever.  And I would be completely recovered from the surgery in one year.  I was prepared to follow directions and let my body do what it needed to do to get well.  I was ready for the good things that were coming my way!

After the appointment, we stopped by the house to pick up Jackson and made the long drive to Mom and Dad's house.  It was time to recover :)

Home Sweet Home...for a little while

I woke in my own bed which was a wonderful thing, but I was in a lot of pain and needed help getting up.  It would just take practice to learn how to get in and out of my bed on my own without hurting my chest.  Dad had to leave early to get back to work.  He had used all his vacation days and didn't have any more time to spare.  It still makes me sick to think that I caused him to use all his days for the year in May.  He never thought twice about it though.  Mom had already sacrificed so much too and needed to get back home.  She was also out of her medicine.  They decided that I wasn't strong enough to make another trip so soon after the flight though.  A plan was put into place.  Mom stayed through the week and went home that weekend to take care of things.  Debbie, Melodie, and Stacey took turns staying with me until she returned on Monday.  We would stop by the school Tuesday to say bye to my class, go to my appointment with the congenital heart doctor, then head back to Mom & Dad's house for a few weeks of recovery.

Cathy Christopher was right.  It was hard.  I couldn't do anything on my own but I was already exhausted from feeling like a burden.  I wanted to be in my own home but I wanted to be with my family.  I wanted to be with my friends who I missed dearly.  I was sick of people griping at me and telling me that I couldn't do things.  It was wonderful to see people those first few days after getting back and it was also hard.  EVERY person that saw me exclaimed about how good I looked.  I know that's wonderful but it's also very hard to handle too.  After the surgery, since my body was actually getting oxygenated blood, my coloring truly went from a grayish tint to a healthy pinky-peach~~almost overnight!  Each visitor meant so much to me because they took the time out of their lives to come and see me!  That's huge to me especially since I couldn't really go anywhere and had been missing them all so much!  Anyhow, as I said, Cathy was right, it was hard, but it was worth it!  I'm so glad I had that week at my home sweet home before we headed west for recovery.

The Friendly Skies :(

I had one last follow up appointment at Dr. Campbell's office with Dr. Babu on Monday morning.  Everything was as expected so I would be able to fly.  They explained that it was safe for me to fly but not advised so soon after surgery.  To continue with recovery though, I needed to be at home and needed to fly to get home.  That's basically why I was cleared to fly. 

Stacey hooked Mom up with knowledge of airport wheelchair transport and got us bulkhead seats on the planes.  As soon as our bags were checked I was tossed in a wheelchair and we were flying through the airport.  All I could do was squeeze that stuffed dog as tightly as possible against my throbbing chest as we raced along.  Periodically he would lean down and mutter, "you k?" to which I would respond with a positive nod.  That guy was serious about his job and didn't waste any time!  We didn't wait in line anywhere, not even at security ~ he just pushed us right on through!  All three of us were very relieved to see our gate.  We were able to take a little break before the plane began loading.

Even though Mom was pushing oxycontin and percocet down me like tic tacs the plane ride was still pretty rough.  During take-off and landing it truly felt like the force was ripping my heart from my chest.  By the time we loaded the second flight to go from Atlanta to Lexington, I was so exhausted that I couldn't grip the stuffed dog anymore.  I just wanted to be done, to be home. 

Melodie picked us up from the airport in Lexington.  It was so good to see her!  Jackson was at the house waiting for us.  He was so calm and careful with me.  When I went to bed, I was laying on my side with my hands clasped together out from my chest.  Jackson gently crawled up on the bed and held my hands between his two paws and went to sleep.  I think my pup missed me. :)

Dr. Kaye

Dr. Kaye was the adult congenital heart specialist that was pulled on board for me.  I know I've said it so many times that it's starting to seem untrue, but he was wonderful!  It just proves that God did masterfully put everything into place because when and where would it ever happen that one person could ever have so many top doctors that truly care!?!? 

He visited me the whole time I was in the hospital.  He explained things to us and took time to talk with us each time he stopped by.  I was particularly impressed with his passion for finding me an adult congenital specialist at home.  He said it was a very small field of doctors but that he was determined to find one for me that he approved.  If not I'd just have to be coming back to Denver to see him. :)  As promised though, he did find a doctor for me, and had an appointment for me on June 2nd which was remarkably fast in the medical world!  What a doctor!

The Pep Talk

So very early on Friday morning one of my many doctors had come into the room and told me I was going home!  I was excited and scared all at the same time.  A few hours later I called Mom and Dad and told them so they would know to come on over to the hospital that morning.  The next doctor that came in didn't say anything about it so I asked and he said, "Oh, we all looked at your numbers again this morning and had decided you're not ready to go home yet."  It turns out that my oxygen levels weren't steady enough and some other things they'd been checking like potassium and such. 

As you can expect, I was a bit crushed.  Probably more because I was extra sensitive than because I wasn't getting out of the hospital.  I started thinking about all things the different doctors had said in the past days and overthinking it all.  I felt like it meant that the surgery didn't work and my lungs were still going to be just as much of a problem.  I was afraid it was all for nothing.  By Saturday morning I was in a tailspin.  I needed someone to prove to me that my chest had been ripped open for a good reason and things were going to get better!  Almost right on cue, Cathy Christopher walked into the room!  She was so calming and comforting.  She knew so much about my case.  She explained how important the surgery was and how remarkable it was that I had lived 32 years with those rare defects.  She explained that I would not have been strong enough to continue much longer with my heart in that condition.  It had to be repaired.  That was exactly what I needed.  I needed someone who knew my situation to prove to me that I was going through all of this for a good reason.  She did just that.  She also talked to me about how hard it would be to go home.  She went into great detail about the impact going home would have on me, my family, and my friends and how it was going to be something I would need to be prepared for, but would still be very difficult.  I tried to just soak everything she said in and remember it.

Saturday afternoon they did release me from the hospital.  The car ride back to the hotel was scary for some reason.  I felt very out of control.  I had trouble keeping my balance with each curve or turn.  It was something else to learn to adjust to. (The doctor had told me that I would have to be a back seat passenger for eight weeks.  It would take that long for my sternum to heal, so until then there would be no driving or riding up front.)  It was good to be back at the hotel, our temporary home away from home.  It was a rough night, but we all made it through. ;)