"Just got back from ph doctor, three month check up. Right heart pressure has dropped from 45 which is severe, to 28, three months after stem cell treatment. This puts me at mild. 25 is normal. So big stuff. This really raised eyebrows at the Clinic. At first, it was "if you have to go out of the country, he is a quack". Now it's "well, we just can't get the funding to keep up with global progress". My O2sats just leveled out but thats because of some copd. I'm going back to treat that. All in all it was a huge success - best money I ever spent."
previous post about StemCell Man here
he also wrote:
"...(The doctor) catheters you through the heart as close to the lungs as possible, balloons it and injects the cells and salt water, putting pressure on it and cramming the cells into the capillaries that give us PHers trouble. From there, the cells divide and grow a new vascular bed. So it's not a government trial, and they are not embryos- they are adult stem cells from your own body and blood. This is done in the US every day with blood or bone marrow for 86 different sicknesses, mostly blood disorders and cancer. But PH is not on the list yet so you have to go off shore."
Saturday, May 31, 2008
Sunday, May 25, 2008
still here, really
Where to start?
The zoo trip was fun. Every parent ought to spend a day chaperoning kindergarten kids around a zoo.
My doctors were happy as usual. They only teased me for a few minutes about keeping such a detailed notebook full of test results. I think they must know it was the only way for me to feel like I had any control over this disease, but they still like to make wisecracks about it. For the record, I haven't even looked at it in probably 6 months. This month, my 6 minute walk result was good, my PFT results were stable, I found out that ANMC does have Revatio in the pharmacy's formulary (no more $45 monthly co-pays!), and I am waiting on a test result to find out if we need to adjust my Synthroid dosage. The rheumatologist is checking into getting Reclast added to the formulary - once that happens I'll stop the once-weekly Fosamax and get the once-yearly IV-infused Reclast. Not that it's realistic or anything but I imagine myself in a room full of beautiful, witty, osteoporotic retired women, sipping chai and having our nails done, Reclast IV bags hanging overhead, complimentary buffet of broccoli, cottage cheese, and calcium-fortified orange juice at the ready.
Girl Scout Bridging ceremonies are sweet, awkward, funny, and- if you're unfortunate enough to have one or two microphone-hogging troop leaders - LONG. Bridging basically means the girls move up from one level of scouting to the next. T bridged from Brownies to Juniors, and BossLady bridged from Daisies to Brownies. Together with the last week of school, it's all an overwhelming mixture of "Oh! They're so cute" and "Oh *%@! They're growing UP".
Our kindergartener graduated... She received the "Journaling Gem" special award, because she luuuuvs to write in her journal. She and her classmates loped into the room with 'Pomp and Circumstance' playing (construction-paper mortar boards & yarn tassels in place), sat quietly through the special awards and the reading of "All I Ever Need to Know I Learned in Kindergarten", then performed a graduation song about first grade, to the tune of "New York, New York". The day before, they whooped it up with all the other kindergarten classes on the school grounds, for Kindergarten Rodeo Day. For her, it meant dashing about with her buddies, playing kiddie-ranch-hand games and eating hot dogs and chips. For me, it meant standing around waiting for takers at my game-station, the Shoe Race; finding a replacement parent to supervise the Shoe Race so I could walk R around the rodeo; and finally ending up filling 5 squirt guns per hand from a bucket for an endless line of kids doing their best to claim the coolest squirt gun before anyone else could. I'd only stopped for a few minutes to help the mom who was already there, but she saw her opportunity and ran for it I guess. You have to be either an idiot or on happy pills to volunteer for the most popular game on Rodeo day.
T's last day of school was similar, but set up for upper grades of course. I didn't have R or BL with me so I got to apply myself as the Snack Table Lady. The weather was perfect and we all had a great day. There was some melancholy for the girls (and their teachers) in the fact of our transferring to another school in the fall. I hope we made the right decision there.
T-ball season is here. K is getting over the early stumbling blocks of coaching and is getting those players into the zone. BossLady seems bored with it, as do all the kids on the team who stand around watching the pitcher and first baseman get all the glory. They all hit pretty well, though. We moms in the bleachers have the most fun, giggling at everything, especially the kids who sit down in the outfield to watch clouds, and the kids who round third and head for the dugout.
My Litter Crew (T, BL) and I made serious headway last week, stuffing 5 ALPAR bags full of trash which seemed mostly downwind of one particular house. I was happy to have given the neighborhood kids one trash-free morning at the bus stop! The Crew found a bucket, two life-preservers, and a bed-pillow among the litter. Then they stopped to climb trees and 'take a break'.
Next up, ballet happenings and hopefully some kind of a gardening beginning... then, soccer.
The zoo trip was fun. Every parent ought to spend a day chaperoning kindergarten kids around a zoo.
My doctors were happy as usual. They only teased me for a few minutes about keeping such a detailed notebook full of test results. I think they must know it was the only way for me to feel like I had any control over this disease, but they still like to make wisecracks about it. For the record, I haven't even looked at it in probably 6 months. This month, my 6 minute walk result was good, my PFT results were stable, I found out that ANMC does have Revatio in the pharmacy's formulary (no more $45 monthly co-pays!), and I am waiting on a test result to find out if we need to adjust my Synthroid dosage. The rheumatologist is checking into getting Reclast added to the formulary - once that happens I'll stop the once-weekly Fosamax and get the once-yearly IV-infused Reclast. Not that it's realistic or anything but I imagine myself in a room full of beautiful, witty, osteoporotic retired women, sipping chai and having our nails done, Reclast IV bags hanging overhead, complimentary buffet of broccoli, cottage cheese, and calcium-fortified orange juice at the ready.
Girl Scout Bridging ceremonies are sweet, awkward, funny, and- if you're unfortunate enough to have one or two microphone-hogging troop leaders - LONG. Bridging basically means the girls move up from one level of scouting to the next. T bridged from Brownies to Juniors, and BossLady bridged from Daisies to Brownies. Together with the last week of school, it's all an overwhelming mixture of "Oh! They're so cute" and "Oh *%@! They're growing UP".
Our kindergartener graduated... She received the "Journaling Gem" special award, because she luuuuvs to write in her journal. She and her classmates loped into the room with 'Pomp and Circumstance' playing (construction-paper mortar boards & yarn tassels in place), sat quietly through the special awards and the reading of "All I Ever Need to Know I Learned in Kindergarten", then performed a graduation song about first grade, to the tune of "New York, New York". The day before, they whooped it up with all the other kindergarten classes on the school grounds, for Kindergarten Rodeo Day. For her, it meant dashing about with her buddies, playing kiddie-ranch-hand games and eating hot dogs and chips. For me, it meant standing around waiting for takers at my game-station, the Shoe Race; finding a replacement parent to supervise the Shoe Race so I could walk R around the rodeo; and finally ending up filling 5 squirt guns per hand from a bucket for an endless line of kids doing their best to claim the coolest squirt gun before anyone else could. I'd only stopped for a few minutes to help the mom who was already there, but she saw her opportunity and ran for it I guess. You have to be either an idiot or on happy pills to volunteer for the most popular game on Rodeo day.
T's last day of school was similar, but set up for upper grades of course. I didn't have R or BL with me so I got to apply myself as the Snack Table Lady. The weather was perfect and we all had a great day. There was some melancholy for the girls (and their teachers) in the fact of our transferring to another school in the fall. I hope we made the right decision there.
T-ball season is here. K is getting over the early stumbling blocks of coaching and is getting those players into the zone. BossLady seems bored with it, as do all the kids on the team who stand around watching the pitcher and first baseman get all the glory. They all hit pretty well, though. We moms in the bleachers have the most fun, giggling at everything, especially the kids who sit down in the outfield to watch clouds, and the kids who round third and head for the dugout.
My Litter Crew (T, BL) and I made serious headway last week, stuffing 5 ALPAR bags full of trash which seemed mostly downwind of one particular house. I was happy to have given the neighborhood kids one trash-free morning at the bus stop! The Crew found a bucket, two life-preservers, and a bed-pillow among the litter. Then they stopped to climb trees and 'take a break'.
Next up, ballet happenings and hopefully some kind of a gardening beginning... then, soccer.
Sunday, May 11, 2008
I heart moms
Yay for Mothers! Mothers all over Alaska, Minnesota, Wyoming... and to the moms I'm closest to, I love you and I hope you had a great day.
My family gave me Alaskan Wildberry chocolates, a card, school-made projects, and a rose. My sister and her family came out to the Valley and we all headed to Palmer to see the baby musk oxen at the Musk Ox Farm. It was too windy for the babies to do anything but hunker down in protected spots. The kids got bored of staring at musk oxen after about two minutes but they had a blast walking into the wind with their hair whipping around.
Once we all got back to our house, we put together a feast of barbecued ribs, deep-fried turkey, potato salad, fresh bread and some other stuff. Cousin-conflict was at a minimum so everybody had a good time! I stuffed myself, maybe I'll gain some weight. Actually I'm stopping here so I can change into some elastic-waist clothes and get my hands on some leftovers.
My family gave me Alaskan Wildberry chocolates, a card, school-made projects, and a rose. My sister and her family came out to the Valley and we all headed to Palmer to see the baby musk oxen at the Musk Ox Farm. It was too windy for the babies to do anything but hunker down in protected spots. The kids got bored of staring at musk oxen after about two minutes but they had a blast walking into the wind with their hair whipping around.
Once we all got back to our house, we put together a feast of barbecued ribs, deep-fried turkey, potato salad, fresh bread and some other stuff. Cousin-conflict was at a minimum so everybody had a good time! I stuffed myself, maybe I'll gain some weight. Actually I'm stopping here so I can change into some elastic-waist clothes and get my hands on some leftovers.
Friday, May 09, 2008
5 minutes
thought processes of a 2-year-old boy
in a 5-minute time span
find the cheerio box, open it, eat cheerios out of the box
get out book with magnetic letters, scatter the letters
match the letters to what's on the pages... or not
insist that Mama holds me, she doesn't need to do all that typing
get Mama to open my juice, drink juice, get Mama to close it; repeat
Oh! There's LEMON on the counter! I need a slice of LEMON!
I think I'll Swiffer a bit... this is a good pretend horse
oops, Mama left a light on, I have to drag her over to the light switch OFF MAMA OFF
here's Mama's pop, she left it here just for me!
hey where are the Cheerios, I need more
OUTSIDE! I HAVE TO GO OUTSIDE AND BLOW BUBBLES!
in a 5-minute time span
find the cheerio box, open it, eat cheerios out of the box
get out book with magnetic letters, scatter the letters
match the letters to what's on the pages... or not
insist that Mama holds me, she doesn't need to do all that typing
get Mama to open my juice, drink juice, get Mama to close it; repeat
Oh! There's LEMON on the counter! I need a slice of LEMON!
I think I'll Swiffer a bit... this is a good pretend horse
oops, Mama left a light on, I have to drag her over to the light switch OFF MAMA OFF
here's Mama's pop, she left it here just for me!
hey where are the Cheerios, I need more
OUTSIDE! I HAVE TO GO OUTSIDE AND BLOW BUBBLES!
Saturday, May 03, 2008
the Boss, on two wheels!
LittleK is not little anymore. Today she fearlessly got on her bicycle, with its training wheels just removed, and took off down the street. We're really proud of her! Since "Little" doesn't apply anymore, her blog name is changing to BossLady, a nickname given to her by an Antiguan friend who visited us in Laramie a few years ago. In his Caribbean accent it's actually Boss LEH-deh.
After a couple of late-April snowfalls, our corner of the world seems to finally have crossed into Spring. Probably the best place to hang out at home is on the front 'porch' because the sun warms it all day - but it's usually overcrowded with tee-ball gear, running shoes and a mix of winter boots and rubber boots. At least the pungent hockey gear has been put away for the season.
I attempted some neighborhood beautification today, picking up one lawn-bag's fill of litter. It was mostly from the front of the condos next door, and the wooded spot between our house and the condos. It's disappointing to have to live next door to them, not just because of the litter and rumble-trucks, but because of the nuisance barking problems... although, having experienced life at the bongo-drummin', chain-smokin' OK Corral Apartments, we're pretty happy here. My next Superfund site is the school bus stop at the top of the hill, next to the forever-in-construction log house. There look to be about 4 or 5, once-full garbage bags which have scattered, including one full of those blue hospital (chux) pads... ew. After that, I'll tackle the mailbox wasteland across from the bus stop. Palmer and Anchorage are in the midst of their Citywide Clean-up weeks, but so far it seems that Wasilla takes a (typically) different approach. If they have a cleanup day, they're keeping it a secret.
It's graduation season! Congratulations to Jennifer, Pat, and all of my little kindergarten friends! I'm now qualified to teach a class on making mortar boards out of construction paper.
Coming up, we've got the kindergarten Zoo trip, the 3rd-graders' trip to Anchorage for the Taiko drummers show at the PAC, my last Bookorder Mom order, my quarterly pulmonologist/rheumatologist appointments, the Girl Scout Bridging ceremony, and the last day of school on May 20th. After that, I'm just going to spend the summer refereeing catfights between T and BossLady.
After a couple of late-April snowfalls, our corner of the world seems to finally have crossed into Spring. Probably the best place to hang out at home is on the front 'porch' because the sun warms it all day - but it's usually overcrowded with tee-ball gear, running shoes and a mix of winter boots and rubber boots. At least the pungent hockey gear has been put away for the season.
I attempted some neighborhood beautification today, picking up one lawn-bag's fill of litter. It was mostly from the front of the condos next door, and the wooded spot between our house and the condos. It's disappointing to have to live next door to them, not just because of the litter and rumble-trucks, but because of the nuisance barking problems... although, having experienced life at the bongo-drummin', chain-smokin' OK Corral Apartments, we're pretty happy here. My next Superfund site is the school bus stop at the top of the hill, next to the forever-in-construction log house. There look to be about 4 or 5, once-full garbage bags which have scattered, including one full of those blue hospital (chux) pads... ew. After that, I'll tackle the mailbox wasteland across from the bus stop. Palmer and Anchorage are in the midst of their Citywide Clean-up weeks, but so far it seems that Wasilla takes a (typically) different approach. If they have a cleanup day, they're keeping it a secret.
It's graduation season! Congratulations to Jennifer, Pat, and all of my little kindergarten friends! I'm now qualified to teach a class on making mortar boards out of construction paper.
Coming up, we've got the kindergarten Zoo trip, the 3rd-graders' trip to Anchorage for the Taiko drummers show at the PAC, my last Bookorder Mom order, my quarterly pulmonologist/rheumatologist appointments, the Girl Scout Bridging ceremony, and the last day of school on May 20th. After that, I'm just going to spend the summer refereeing catfights between T and BossLady.
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