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.