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.