Tonight is LittleK's big night, the dance recital! Last night's dress rehearsal was chaos... there are 25 different classes of ballet, jazz, modern and pre-dance students performing. Our group's costumes didn't get here until noon today - so we moms were all scrambling to get them into the little red flapper outfits and over to the photo studio for their group photo. It's gonna be the cutest thing. There are only 10 in their group and they don't all pay attention well but LittleK's got it down. Big red feathers in their hair, sequins...
We were able to connect with the webcams so that K could make goofy faces with the girls and watch baby roll over & sit unassisted. The rolling over mostly happens just from back to tummy but occasionally R can figure out the tummy to back motion.
T got a new bike... she won't let us take off the training wheels on any bike, but I guess it would be worse to push her into taking them off and end up at the ER or something. I got the bike so she wouldn't get teased at school today for "Wheels Day", for having the only bike with 12" wheels and training wheels too. We had to actually find and adjust her helmet, and buy a bike lock at the store. I guess today was the day for the kids to bring home all their junk from school so we parents can enjoy it all.
Grampy will get here tomorrow, we'll all go to the circus on Friday (after school's out!), then we'll drive south to Albuquerque Saturday morning. Aunt Wanda lives there with one of her daughters and her own mom. Her other daughter will be visiting at the same time, and her brother George will drive down from WA with his girlfriend - so it'll be a crowd. Hopefully they won't mind the whooshing of the oxygen concentrator all night. Chena gets to play at the vet's until next Wednesday. The fish and plants have to fend for themselves.
Healthwise, not much is different. I decided to compromise with the doctor without telling her and change the prednisone dose from 40 to 35... but after a few days I realized I hadn't cut the pills enough times and I've only been taking 30. Oh well! I figure if the eight other meds are working to make me better, I can cut down on the steroid monster. My next appointment with the pulmonologist will be on the 8th so I'll have something new to say after that.
Wednesday, May 31, 2006
Friday, May 26, 2006
Making progress
So I had another echocardiogram on May 16th and the pericardial effusion is gone, my pulmonary artery pressure is down to 79... things are looking better. I saw the internist here on the 24th and asked him a bunch of questions. He reviewed the echo results and said it's encouraging. According to him:
Baby R's blanket is coming along (blue cable knit)... I try to work on it every day and go to the knitting group that meets at the local yarn shop on Mondays. I keep flaking out and getting the night wrong though!! I bring my cane there so they're not worried I'll fall to my knees again like I did a month ago.
Mom's really great to have around, she does all the little things I'd rather not like dishes, bedtime routine, vacuuming, etc. She makes sure the kids spend time outdoors, she walks the dog, she sings with the girls and holds R all the time. We've ironed out the little differences we have and things are going really smoothly. Everyone's excited for the upcoming arrival of Grampy and the trip to Albuquerque!!
So LittleK's done with school, T has one more short week of first grade, and then we'll start 'homeschool'. I guess I should start some plans now so it doesn't turn into a big messy summer of disappointment and whining about "but youSAIDWECOULDDO HOMESCHOOL MAMAAAAAAAAA"
Time to go and turn on the boob tube for some mindless entertainment. And time to knit.
- my March pressure of 113 was one of the highest he's ever seen
- it would be great if someday the pressure would get down to maybe 60 or even 50 but it won't ever be normal again
- I should have another echo around the end of June
- I'll be on most of these drugs forever
- the night-time oxygen I'm on is helping to reduce the arterial pressure
- I don't need to be seen at the U of Colorado Pulmonary Hypertension Center... unless things get worse
- I don't need to worry about right heart failure at this point, since the arterial pressure coming down should reverse some of the RHF
- and I should probably stay at 40mg of prednisone a day like the pulmonologist wants, even though I'm inclined to just start tapering it on my own!
Baby R's blanket is coming along (blue cable knit)... I try to work on it every day and go to the knitting group that meets at the local yarn shop on Mondays. I keep flaking out and getting the night wrong though!! I bring my cane there so they're not worried I'll fall to my knees again like I did a month ago.
Mom's really great to have around, she does all the little things I'd rather not like dishes, bedtime routine, vacuuming, etc. She makes sure the kids spend time outdoors, she walks the dog, she sings with the girls and holds R all the time. We've ironed out the little differences we have and things are going really smoothly. Everyone's excited for the upcoming arrival of Grampy and the trip to Albuquerque!!
So LittleK's done with school, T has one more short week of first grade, and then we'll start 'homeschool'. I guess I should start some plans now so it doesn't turn into a big messy summer of disappointment and whining about "but youSAIDWECOULDDO HOMESCHOOL MAMAAAAAAAAA"
Time to go and turn on the boob tube for some mindless entertainment. And time to knit.
Sunday, May 07, 2006
Introducing... ME!
There have been some pretty big changes around here lately. So I thought I'd start up a new blog to attempt to keep track of it all, and help family and friends make it through everything with us.
I have Pulmonary Hypertension, which showed up on an echocardiogram in March of this year at a very high 113. Normal is considered anything below 25. I'm being treated with 9 different medications for various problems and am coping as well as I can considering the disease prognosis and drug side effects. There is also scarring in my lungs but the docs don't seem to want to make a diagnosis of pulmonary fibrosis yet. We're on the wait-and-see plan.
The kids are happy, healthy and growing. They're actually pretty socially acceptable little people who aren't rude or spoiled or lacking in the areas of manners, smarts or looks... so their dad and I are proud of our parenting accomplishments so far.
As for their dad, he's healthy and employed but I'm not sure about the happy aspect at this point, due to the major problems that have come up with my health. So, here's the story.
Eight years ago I was diagnosed with systemic lupus erythematosus (lupus). The disease attacked my heart, creating a pericardial effusion, making my heart function poorly and my entire body swell with extra fluid. It was all brought on by stress... I was finishing xray training after three years away from home, moving back to Alaska, starting a new job. The doctors couldn't figure out what was wrong for a couple of months, until my new-employee physical when a very good P.A. decided I needed an ultrasound of my heart. From that point I was treated with high-dose prednisone, saw specialists in Anchorage and eventually more lupus symptoms manifested themselves. The following winter I became pregnant with our first baby, a daughter, and nearly all my symptoms went away for seven years. I stopped working four years into the job and became a SAHM. We've had two more kids, a daughter and a son - so it seems being pregnant or nursing kept the lupus in remission.
We moved to Wyoming in November 2002 for K to take a great job flying for the University. It's been an adventure, relocating and experiencing life out of rural Alaska. There are so many family-oriented things we've been able to do that it's been worth the struggles. The kids have great schools, playgroups, soccer, ballet, storytimes and endless other opportunities. K's got hockey, baseball, softball, running, hunting, fishing, camping... all that. I've done a few things outside of mom-ing: made it to a few scrapbooking things and knitting group nights at the local yarn shop. This intensive mom-phase of life seems to be ETERNAL.
The elevation here is 7200', compared to Nome's sea level and Denver's 5280'. Living at high altitudes, air travel, and being pregnant are all situations that can make Pulmonary Hypertension worse... So I've had this condition without knowing it maybe for years, and have been doing every single thing I can possibly do to make it worse. Unintentionally of course. Including not seeing any doctors for lupus because I thought I was so healthy.
Throughout 2005 I was pregnant, tired, and having symptoms of general inflammation without thinking much of it... After baby was born in November, I started being short of breath more and more often. By March 2006 when K was leaving for a 3-week project, I knew it was another pericardial effusion coming on, because I started having swollen hands, feet and face. So I saw a doctor, got on some high-dose prednisone and thought it would be just like the last lupus flare. Then two days before K was scheduled to be back, I started coughing up blood, ended up in the ER at 6am with three kids and a big bad pneumonia. My good friends took the girls while I was admitted, and K made it home early thanks to the kindness of his boss.
Since then I've had several tests (CT's, xrays, labs, bronchoscopy) which revealed the pulmonary hypertension. It's treated with drugs to help people be able to tolerate walking and exercise better, but the only cure is lung transplant.
So the three big questions we're facing are: 1) what's my life expectancy considering my severe PH; 2) is it secondary PH or primary PH; and 3) how far into the future will we be moving to a lower altitude to lessen the workload on my heart and lungs. All the doctors we've talked to have basically said we need to wait until the lupus flare is over, then we'll see how my heart and lungs are doing.
I have Pulmonary Hypertension, which showed up on an echocardiogram in March of this year at a very high 113. Normal is considered anything below 25. I'm being treated with 9 different medications for various problems and am coping as well as I can considering the disease prognosis and drug side effects. There is also scarring in my lungs but the docs don't seem to want to make a diagnosis of pulmonary fibrosis yet. We're on the wait-and-see plan.
The kids are happy, healthy and growing. They're actually pretty socially acceptable little people who aren't rude or spoiled or lacking in the areas of manners, smarts or looks... so their dad and I are proud of our parenting accomplishments so far.
As for their dad, he's healthy and employed but I'm not sure about the happy aspect at this point, due to the major problems that have come up with my health. So, here's the story.
Eight years ago I was diagnosed with systemic lupus erythematosus (lupus). The disease attacked my heart, creating a pericardial effusion, making my heart function poorly and my entire body swell with extra fluid. It was all brought on by stress... I was finishing xray training after three years away from home, moving back to Alaska, starting a new job. The doctors couldn't figure out what was wrong for a couple of months, until my new-employee physical when a very good P.A. decided I needed an ultrasound of my heart. From that point I was treated with high-dose prednisone, saw specialists in Anchorage and eventually more lupus symptoms manifested themselves. The following winter I became pregnant with our first baby, a daughter, and nearly all my symptoms went away for seven years. I stopped working four years into the job and became a SAHM. We've had two more kids, a daughter and a son - so it seems being pregnant or nursing kept the lupus in remission.
We moved to Wyoming in November 2002 for K to take a great job flying for the University. It's been an adventure, relocating and experiencing life out of rural Alaska. There are so many family-oriented things we've been able to do that it's been worth the struggles. The kids have great schools, playgroups, soccer, ballet, storytimes and endless other opportunities. K's got hockey, baseball, softball, running, hunting, fishing, camping... all that. I've done a few things outside of mom-ing: made it to a few scrapbooking things and knitting group nights at the local yarn shop. This intensive mom-phase of life seems to be ETERNAL.
The elevation here is 7200', compared to Nome's sea level and Denver's 5280'. Living at high altitudes, air travel, and being pregnant are all situations that can make Pulmonary Hypertension worse... So I've had this condition without knowing it maybe for years, and have been doing every single thing I can possibly do to make it worse. Unintentionally of course. Including not seeing any doctors for lupus because I thought I was so healthy.
Throughout 2005 I was pregnant, tired, and having symptoms of general inflammation without thinking much of it... After baby was born in November, I started being short of breath more and more often. By March 2006 when K was leaving for a 3-week project, I knew it was another pericardial effusion coming on, because I started having swollen hands, feet and face. So I saw a doctor, got on some high-dose prednisone and thought it would be just like the last lupus flare. Then two days before K was scheduled to be back, I started coughing up blood, ended up in the ER at 6am with three kids and a big bad pneumonia. My good friends took the girls while I was admitted, and K made it home early thanks to the kindness of his boss.
Since then I've had several tests (CT's, xrays, labs, bronchoscopy) which revealed the pulmonary hypertension. It's treated with drugs to help people be able to tolerate walking and exercise better, but the only cure is lung transplant.
So the three big questions we're facing are: 1) what's my life expectancy considering my severe PH; 2) is it secondary PH or primary PH; and 3) how far into the future will we be moving to a lower altitude to lessen the workload on my heart and lungs. All the doctors we've talked to have basically said we need to wait until the lupus flare is over, then we'll see how my heart and lungs are doing.
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