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.
Monday, February 28, 2011
Tuesday, February 22, 2011
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.
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.
Thursday, February 17, 2011
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.
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.
Friday, February 4, 2011
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.
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.
Thursday, February 3, 2011
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.
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.
Wednesday, February 2, 2011
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.
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.
Tuesday, February 1, 2011
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. :)
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. :)
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