Anywho, in my attempts to rest yet still enjoy the beautiful day that the Lord hath made, I sat on the back patio glider and read the rest of my book (The Friday Night Knitting Club, by Kate Jacobs):
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Sunday, August 30, 2009
it's a beautiful day
It is absolutely gorgeous outside today!! 75 degrees, sunny, clear and a light breeze. Makes me feel like I have a lot more energy than I actually do. It has been really hard to "rest" these last few weeks. Normally, I am like an Energizer Bunny... so sitting around being restricted by my weak muscles, non-fully-functional lungs and really sore surgery site is about to drive me crazy. Fortunately, I gain more self-sufficiency each day that passes. I went from being unable to shower on my own on August 19, to doing laundry and loading/unloading the dishwasher today! Me and Topher even had date night on Friday! AND went furniture shopping on Saturday, although that absolutely wore me out.
Anywho, in my attempts to rest yet still enjoy the beautiful day that the Lord hath made, I sat on the back patio glider and read the rest of my book (The Friday Night Knitting Club, by Kate Jacobs):
Several girls from the Side by Side group in Memphis had read this and recommended it, so I bought it like eight months ago but just got around to reading it. It's 630 pages, but it goes quickly. :) As a warning, there is some bad language in it, but it's relatively sparce. I'm trying to decide what book I want to start next. Or maybe I should concentrate on finishing crocheting the blanket I started a year ago so I'll have it ready by winter...
Anywho, in my attempts to rest yet still enjoy the beautiful day that the Lord hath made, I sat on the back patio glider and read the rest of my book (The Friday Night Knitting Club, by Kate Jacobs):
Thursday, August 27, 2009
good report today
Today was my first follow up visit post-hospital-release. I went to see the cardiothoracic surgeon- Dr. Reda.
I got a chest x-ray done, which apparently is clear of "infiltrates"! Dr. Reda said it looked remarkable!! I get a chest CT done next week, so we'll see if there are any visible nodules on that scan. Having the chest x-ray be clear is a GREAT improvement!!!
Also, the thoracotomy incision looks great- it is healing really nicely. Doc took all the little "steri-strips" off in the office today. The two chest tube holes are healing as well- one better than the other, but Dr. Reda said they shouldn't really scar, which is good news. I don't mind a little scarring from my battle wounds- one of my friends said I just say I was attacked by a ninja. I think I'll stick to that story.
Overall, an excellent report. I am clearly getting better, one day at a time... and it is thanks to all of the prayers I have received from friends and family. Thank you so much for your love and concern for me.
Next week I see the pulmonologist and my internal medicine PCP. I'll let you know the report from the CT and those two visits. :) I see a GI doc (FINALLY!) on Sept 21. Hopefully, a lot of decisions will be made that day about my disease maintenance/care.
"Give thanks to the Lord, for He is good. His love endures forever."
1 Chron. 16:34
I got a chest x-ray done, which apparently is clear of "infiltrates"! Dr. Reda said it looked remarkable!! I get a chest CT done next week, so we'll see if there are any visible nodules on that scan. Having the chest x-ray be clear is a GREAT improvement!!!
Also, the thoracotomy incision looks great- it is healing really nicely. Doc took all the little "steri-strips" off in the office today. The two chest tube holes are healing as well- one better than the other, but Dr. Reda said they shouldn't really scar, which is good news. I don't mind a little scarring from my battle wounds- one of my friends said I just say I was attacked by a ninja. I think I'll stick to that story.
Overall, an excellent report. I am clearly getting better, one day at a time... and it is thanks to all of the prayers I have received from friends and family. Thank you so much for your love and concern for me.
Next week I see the pulmonologist and my internal medicine PCP. I'll let you know the report from the CT and those two visits. :) I see a GI doc (FINALLY!) on Sept 21. Hopefully, a lot of decisions will be made that day about my disease maintenance/care.
"Give thanks to the Lord, for He is good. His love endures forever."
1 Chron. 16:34
Saturday, August 22, 2009
craziness...
The last six-seven weeks has quite possibly been the worst days of my life... but thanks be to God, I know I'm loved.
Summary: After two hospitalizations, one of which being eight long days, I have been diagnosed with an extremely rare pulmonary manifestation of Crohn's disease. I've had Crohn's for about five years now, but this is wacko. There are less than 10 reported cases of these "pulmonary necrobiotic nodules" and even fewer cases where there are no GI symptoms of a flare-up. So I am a freakazoid. lol! The doctors in charge of my care at the Univ. of KY get to write me up as a case study and will likely publish a journal article. Plus they've asked me to participate in a teaching session- just talk about my experience with all of this madness.
What happened: The pain in my left side started in the very beginning of July. It manifested itself in different ways so I thought different organs were being affected... like spleen pain, then kidney pain, etc. I went to see a family practice doctor, who assumed I had pyelonephritis. Clearly we were wrong about that. Or maybe not- I did have blood and leukocytes in my urine. Who knows. They ended up finding a kidney stone on CT, but it was not the problem either- it was tiny and non-obstructive.
After some antibiotics, I was not getting better. The side pain got worse. I developed a fever. I threw up.
Then the erythema nodosum and arthritis flared up so bad I couldn't walk.
Chris took me to the ER... let the madness begin.
I was admitted for three days and left with no diagnosis and a ridiculous dose of antibiotics to take in case I had an infection. (which I did not have)
Antibiotics, again, were not making me feel better, so clearly they were not working. Still spiking fever on and off again.
Went back to see the internal medicine doctor who took care of me in the hospital. Got a chest x-ray which revealed this enormous "infiltrate" in my left lung, as they called it. So I promptly went to get a chest CT, of which the results scared the living daylights out of me. My lung was bombarded with all these nodule thingies. My first thought: EEEEEEEK I HAVE CANCER!
Next step: Needle lung biopsy. Ew. It didn't suck as bad as I assumed it would, but I was awake, so it freaked me out a little. We got a big bunch of nothin' from that test... Hmm, so what is it?
Meanwhile at home I am worthlessly ill. In so much pain constantly.
Things got really bad on August 10. My fever spiked up to 104 degrees. My doc told me to come directly to the hospital, do not pass go, do not collect $200. So as soon as a bed opened up, I was admitted.
Monday August 10 was the worst day of my life. I was completely miserable from pain all in my chest, burning up from fever, nauseous and throwing up. I had to transfer hospitals around midnight, which meant getting orders for pain, fever and nausea meds was taking FREAKING FOREVER. My sweet momma held me all night. They tried four times to get an IV in my arm, but failed each time. I finally demanded that they stop trying- I would just drink some water.
It was a rough week in the hospital. They did a lung biopsy on Aug 12, via thoracotomy- the laparoscopic attempt failed for whatever reason. That sucked. I had two chest tubes draining fluid into boxes on the floor and a 4-inch incision on my left side between ribs. I had a catheter, which is actually quite convenient, haha. I was on oxygen and a million IV meds. (God bless the woman who was able to stick me on her first try Monday night, once I got to Chandler hospital)
One by one, the cultures from the biopsy were coming back negative for all types of infections- fungal and bacterial. The report was negative for vasculitis (thank goodness). The pathologist referenced an article from Mayo Clinic about these two patients who had non-infectious necrobiotic nodules in their lungs... just like mine. Bring on the steroids. And I was still on lots of antibiotics for good measure.
There were about a hundred doctors working on me: pulmonology, rheumatology, internal medicine, cardiothoracic surgery... and they would make their daily rounds, bringing 15 people in with "the team" every time. (a bit of an exaggeration of course) UK is a teaching hospital, obviously, so there were always attending physicians, fellows, residents and students coming to see me. I'm sure they had a great time with my mystery diagnosis.
Hospital bed = misery. Hospital bathroom = misery. Hospital food wasn't that bad actually, except I couldn't eat. I was always full in three bites or less, then my stomach pain from gas was so bad I couldn't bear to eat anything else. It took an army to get me to the bathroom.
Side note: I've lost 12 pounds as of today (8/22).
I weaned myself off the oxygen tank on Saturday/Sunday- meant I got to go home sooner. My blood pressure and heart rate started freaking out on Sunday or Monday. High BP and extremely low HR. Very strange- no real explanation for that one. I got to go home on Tuesday. Although it took forever to leave because their computer system went down. Of course.
It's been nice to be home. Words cannot express the joy of being out of the smelly hospital. It makes me want to gag just thinking about it, so I wont.
God is good. My family took extraordinary care of me. I had visitors come love on me and encourage me. I got flowers, cards, stuffed animals. But the greatest gift of all was that my father led a complete stranger to a relationship with Christ. He just happened to go outside to check phone messages and regroup and met up with a man on a brick wall. They chatted for a while about what was going on in life, and the conversation with him led to Christ. Daddy came back inside and I boo-hooed as he told me the story. What if all this illness was just for that one man's soul to be saved? Was it worth it? UM, YES IT WAS. Really made me think about Jesus' sacrifice to save all of mankind. I was full of joy, yet I didn't even meet this man. Jesus knows us all.
Suffering is a strange thing. Yes, you have pity parties. Yes, you get frustrated. Yes, you say "why me" sometimes. But I tell you what--- nothing has brought me closer to Christ and to my family. Scripture is full of promises about suffering- that we'll go through it and that it is a blessing. God did not cause my suffering, but He has allowed it. I hope that my life can reflect a positive attitude through this.
Cling to Romans 8:28: "For we know that all things work together for good for those who love the Lord and are called according to His purpose."
God is bigger than us. Much bigger. Scratch that mad spot and get glad- you never know what the Lord is up to. :)
Summary: After two hospitalizations, one of which being eight long days, I have been diagnosed with an extremely rare pulmonary manifestation of Crohn's disease. I've had Crohn's for about five years now, but this is wacko. There are less than 10 reported cases of these "pulmonary necrobiotic nodules" and even fewer cases where there are no GI symptoms of a flare-up. So I am a freakazoid. lol! The doctors in charge of my care at the Univ. of KY get to write me up as a case study and will likely publish a journal article. Plus they've asked me to participate in a teaching session- just talk about my experience with all of this madness.
What happened: The pain in my left side started in the very beginning of July. It manifested itself in different ways so I thought different organs were being affected... like spleen pain, then kidney pain, etc. I went to see a family practice doctor, who assumed I had pyelonephritis. Clearly we were wrong about that. Or maybe not- I did have blood and leukocytes in my urine. Who knows. They ended up finding a kidney stone on CT, but it was not the problem either- it was tiny and non-obstructive.
After some antibiotics, I was not getting better. The side pain got worse. I developed a fever. I threw up.
Then the erythema nodosum and arthritis flared up so bad I couldn't walk.
Chris took me to the ER... let the madness begin.
I was admitted for three days and left with no diagnosis and a ridiculous dose of antibiotics to take in case I had an infection. (which I did not have)
Antibiotics, again, were not making me feel better, so clearly they were not working. Still spiking fever on and off again.
Went back to see the internal medicine doctor who took care of me in the hospital. Got a chest x-ray which revealed this enormous "infiltrate" in my left lung, as they called it. So I promptly went to get a chest CT, of which the results scared the living daylights out of me. My lung was bombarded with all these nodule thingies. My first thought: EEEEEEEK I HAVE CANCER!
Next step: Needle lung biopsy. Ew. It didn't suck as bad as I assumed it would, but I was awake, so it freaked me out a little. We got a big bunch of nothin' from that test... Hmm, so what is it?
Meanwhile at home I am worthlessly ill. In so much pain constantly.
Things got really bad on August 10. My fever spiked up to 104 degrees. My doc told me to come directly to the hospital, do not pass go, do not collect $200. So as soon as a bed opened up, I was admitted.
Monday August 10 was the worst day of my life. I was completely miserable from pain all in my chest, burning up from fever, nauseous and throwing up. I had to transfer hospitals around midnight, which meant getting orders for pain, fever and nausea meds was taking FREAKING FOREVER. My sweet momma held me all night. They tried four times to get an IV in my arm, but failed each time. I finally demanded that they stop trying- I would just drink some water.
It was a rough week in the hospital. They did a lung biopsy on Aug 12, via thoracotomy- the laparoscopic attempt failed for whatever reason. That sucked. I had two chest tubes draining fluid into boxes on the floor and a 4-inch incision on my left side between ribs. I had a catheter, which is actually quite convenient, haha. I was on oxygen and a million IV meds. (God bless the woman who was able to stick me on her first try Monday night, once I got to Chandler hospital)
One by one, the cultures from the biopsy were coming back negative for all types of infections- fungal and bacterial. The report was negative for vasculitis (thank goodness). The pathologist referenced an article from Mayo Clinic about these two patients who had non-infectious necrobiotic nodules in their lungs... just like mine. Bring on the steroids. And I was still on lots of antibiotics for good measure.
There were about a hundred doctors working on me: pulmonology, rheumatology, internal medicine, cardiothoracic surgery... and they would make their daily rounds, bringing 15 people in with "the team" every time. (a bit of an exaggeration of course) UK is a teaching hospital, obviously, so there were always attending physicians, fellows, residents and students coming to see me. I'm sure they had a great time with my mystery diagnosis.
Hospital bed = misery. Hospital bathroom = misery. Hospital food wasn't that bad actually, except I couldn't eat. I was always full in three bites or less, then my stomach pain from gas was so bad I couldn't bear to eat anything else. It took an army to get me to the bathroom.
Side note: I've lost 12 pounds as of today (8/22).
I weaned myself off the oxygen tank on Saturday/Sunday- meant I got to go home sooner. My blood pressure and heart rate started freaking out on Sunday or Monday. High BP and extremely low HR. Very strange- no real explanation for that one. I got to go home on Tuesday. Although it took forever to leave because their computer system went down. Of course.
It's been nice to be home. Words cannot express the joy of being out of the smelly hospital. It makes me want to gag just thinking about it, so I wont.
God is good. My family took extraordinary care of me. I had visitors come love on me and encourage me. I got flowers, cards, stuffed animals. But the greatest gift of all was that my father led a complete stranger to a relationship with Christ. He just happened to go outside to check phone messages and regroup and met up with a man on a brick wall. They chatted for a while about what was going on in life, and the conversation with him led to Christ. Daddy came back inside and I boo-hooed as he told me the story. What if all this illness was just for that one man's soul to be saved? Was it worth it? UM, YES IT WAS. Really made me think about Jesus' sacrifice to save all of mankind. I was full of joy, yet I didn't even meet this man. Jesus knows us all.
Suffering is a strange thing. Yes, you have pity parties. Yes, you get frustrated. Yes, you say "why me" sometimes. But I tell you what--- nothing has brought me closer to Christ and to my family. Scripture is full of promises about suffering- that we'll go through it and that it is a blessing. God did not cause my suffering, but He has allowed it. I hope that my life can reflect a positive attitude through this.
Cling to Romans 8:28: "For we know that all things work together for good for those who love the Lord and are called according to His purpose."
God is bigger than us. Much bigger. Scratch that mad spot and get glad- you never know what the Lord is up to. :)
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