Christmas was perfect, we had a full house, it was fun and loud and there was so much delicious food! Thanks to everyone who was a part of the big day, especially Mom and John.
R has a fever right now so I was online searching for pediatric Tylenol dosage information. The hospital doesn't allow people to talk to ER nurses so I guess we have to find our own way...
Last Friday Mom & I had appointments which all worked out great. I am now back into their system as an Alaskan resident and therefore eligible for healthcare at ANMC. I think I may have overwhelmed the doctor I saw in Family Medicine, since I have so much going on. We covered everything and he's referring me to Pulmonology, Opthalmology and the 'Coumadin Clinic'. It feels good to be making progress.
There are so many friends and relatives I've been able to see for the first time in ages. I forget that they haven't seen me with the nasal cannula so their concerned looks sort of make me want to giggle (no disrespect, I can't explain it). Everyone's so nervous about stepping on the crazy long oxygen tube. There's some prank potential there...
So K & T joined us on Saturday and our little family is temporarily back together, tripping over our bags of clothes and junk in Mom's guest room. I love being together in a different setting, it brings us closer together.
Sunday we got to watch my sister's daughters be baptized. They all did so well and looked beautiful. It was the second time already that we joined them at church - we watched the girls perform in the Christmas program last week.
Anyway, I've got other stuff to do like finish some laundry and check on the baby before I regain my status as Laziest Person in the House.
Happy Holidays everyone!
Tuesday, December 26, 2006
Wednesday, December 20, 2006
Change in latitude, change in attitude
Here we are as in olden days...
LittleK, R and I arrived in Anchorage last Saturday with Mom. Many many thanks to UncleB and AuntieM for graciously allowing us to invade the house, eat all the food, and hog the TV. We love you guys!!
While in Denver, K and I went to the University hospital and talked with Dr. Voelkel about me and my diseases. He believes my pulmonary hypertension is most influenced by my autoimmune problems. He felt the need to stress how serious this all is... maybe I smiled too much, I don't know. He also thinks that I could qualify for some clinical drug trials. I will need to return to Denver to have some tests done, including a right heart catheterization... those tests will likely be scheduled for mid-January. Meanwhile, I'll be seeing a doctor here in Anchorage at ANMC, to be established in their system and to give them an opportunity to realize what a train wreck they have on their hands.
"Moving" was a bit stressful, because I'm such a procrastinator. Nothing really went like I'd imagined it as far as preparing, packing, sifting through the mountains of paperwork and clutter I've accumulated over the past four years. I managed to create one clump of stuff to be given to the Salvation Army thrift store, and I emotionally separated myself from one giant garbage bag of stuff which qualified as GARBAGE. I will definitely have to go back to Laramie to continue the process...
I think the most stressful part of coming up here was convincing healthcare providers at ANMC that I really do need oxygen. That was harder than working with the airline in setting up oxygen for flights. ANMC's rules are that you have to be Alaskan Native and also physically a resident of Alaska to receive their benefits. So I just ran into so many annoying technicalities - I've seriously amped up my dependence on Pepsi for providing physical and emotional relief. I luuuuuuuuv Pepsi.
Anyway, the kids are loving it here, we're excited for K and T to join us this weekend until January 1st, and I feel great. We'll surely be having a white Christmas.
LittleK, R and I arrived in Anchorage last Saturday with Mom. Many many thanks to UncleB and AuntieM for graciously allowing us to invade the house, eat all the food, and hog the TV. We love you guys!!
While in Denver, K and I went to the University hospital and talked with Dr. Voelkel about me and my diseases. He believes my pulmonary hypertension is most influenced by my autoimmune problems. He felt the need to stress how serious this all is... maybe I smiled too much, I don't know. He also thinks that I could qualify for some clinical drug trials. I will need to return to Denver to have some tests done, including a right heart catheterization... those tests will likely be scheduled for mid-January. Meanwhile, I'll be seeing a doctor here in Anchorage at ANMC, to be established in their system and to give them an opportunity to realize what a train wreck they have on their hands.
"Moving" was a bit stressful, because I'm such a procrastinator. Nothing really went like I'd imagined it as far as preparing, packing, sifting through the mountains of paperwork and clutter I've accumulated over the past four years. I managed to create one clump of stuff to be given to the Salvation Army thrift store, and I emotionally separated myself from one giant garbage bag of stuff which qualified as GARBAGE. I will definitely have to go back to Laramie to continue the process...
I think the most stressful part of coming up here was convincing healthcare providers at ANMC that I really do need oxygen. That was harder than working with the airline in setting up oxygen for flights. ANMC's rules are that you have to be Alaskan Native and also physically a resident of Alaska to receive their benefits. So I just ran into so many annoying technicalities - I've seriously amped up my dependence on Pepsi for providing physical and emotional relief. I luuuuuuuuv Pepsi.
Anyway, the kids are loving it here, we're excited for K and T to join us this weekend until January 1st, and I feel great. We'll surely be having a white Christmas.
Monday, December 04, 2006
here's a hug
It's funny how each day is the same 24 hours, but now that we're getting closer to leaving, the days seem so short.
I'm writing today mostly because it's one way to avoid housework (!)... but also because I need to acknowledge the friends and family who actually take time to read this. Just to know that you care really means alot to me, because this is pretty serious stuff my little family and I are facing. Quyanna from the bottom of my heart!
I'm writing today mostly because it's one way to avoid housework (!)... but also because I need to acknowledge the friends and family who actually take time to read this. Just to know that you care really means alot to me, because this is pretty serious stuff my little family and I are facing. Quyanna from the bottom of my heart!
Saturday, December 02, 2006
art museum day
This morning after K left (why do university people have to fly on weekends?) - the two younger kids and I went to pick up T from her best friend's house. They had a sleepover for the friend's birthday and had a blast, giggling, eating, talking, playing and not sleeping much.
We went to a community Christmas celebration at the fine arts museum. The kids were only slightly bored doing holiday crafts and listening to pianists, guitarists, choirs and school orchestras. I got tired of it all pretty quickly because I didn't bring the stroller. It was a crappy day anyway because it started with a loud and prolonged temper tantrum by LittleK. Her tantrums feel like physical and emotional assaults and it takes some time for us all to recover. This one was about her clothes... I will usually let her dress herself no matter how crazy it looks but not today, not a ragged blue cardigan underneath a red velvet dress with pink and white light-up shoes.
Healthwise, I did see the rheumatologist last week, and there was nothing new to talk about. He did say that how lupus affects an individual doesn't usually change over time. In other words, it's not likely that it will attack my nervous system or my kidneys - it will probably just attack my lungs and heart more, if and when it does flare again. I'll be seeing a PH specialist at the university hospital in Denver on the 12th, so who knows, it may be another ten days before I update this again. Thanks for checking in!
We went to a community Christmas celebration at the fine arts museum. The kids were only slightly bored doing holiday crafts and listening to pianists, guitarists, choirs and school orchestras. I got tired of it all pretty quickly because I didn't bring the stroller. It was a crappy day anyway because it started with a loud and prolonged temper tantrum by LittleK. Her tantrums feel like physical and emotional assaults and it takes some time for us all to recover. This one was about her clothes... I will usually let her dress herself no matter how crazy it looks but not today, not a ragged blue cardigan underneath a red velvet dress with pink and white light-up shoes.
Healthwise, I did see the rheumatologist last week, and there was nothing new to talk about. He did say that how lupus affects an individual doesn't usually change over time. In other words, it's not likely that it will attack my nervous system or my kidneys - it will probably just attack my lungs and heart more, if and when it does flare again. I'll be seeing a PH specialist at the university hospital in Denver on the 12th, so who knows, it may be another ten days before I update this again. Thanks for checking in!
Friday, November 24, 2006
bring on the Christmas madness
Happy Thanksgiving to our family & friends! We're thankful you're a part of our lives.
We spent yesterday with Kim, Danny & their family. The food & company was great of course, there were very few kid-fights, some football watching and hours of card games. Everybody had a good time and got stuffed...
Time is winding down and it will soon be Moving Day for me and the two younger kids. I'm not exactly sure of the date yet but it may be around December 15th. K and T will join us in Anchorage just before Christmas. I haven't packed a thing and have only begun attacking the piles of clutter I have in each room so-
I'd better not waste any more time here huh?
We spent yesterday with Kim, Danny & their family. The food & company was great of course, there were very few kid-fights, some football watching and hours of card games. Everybody had a good time and got stuffed...
Time is winding down and it will soon be Moving Day for me and the two younger kids. I'm not exactly sure of the date yet but it may be around December 15th. K and T will join us in Anchorage just before Christmas. I haven't packed a thing and have only begun attacking the piles of clutter I have in each room so-
I'd better not waste any more time here huh?
Tuesday, November 14, 2006
pillllllllzzzzzzzz
This speaks for itself I think.
Not present for picture-day: Boniva & Guaifenisen.
Sunday, November 12, 2006
HAPPY BIRTHDAY BABY!
R is one year old today! So we get to remember how crazy it was the week he was born, and realize how many things he's learned and experienced. Right now he's coming down from his first-ever sugar high.
Thursday, October 26, 2006
I lost my.... Viagra
Yeah, that's right, I misplaced a bottle of Revatio, which is just a polite alternative name for Viagra, which I take for pulmonary hypertension. I know you're thinking, yeah, sure, Ginny...
Anyway, in my chaotic daily life as mom/chauffeur/really bad housekeeper, I somehow came up short about 40 Revatio pills. It's silly - I think I had them in the car one day, I think I threw away an empty (but was it?) bottle another day. So I called the specialty pharmacy to replace the missing medication, and found out my monthly supply of 90 pills would normally cost $900 !!!!!
Insurance pays for it, except for a $20 co-pay. Wow. I guess our insurance company rep was having a good-karma day because they decided to pay for my replacement stuff. I'm just a bit embarrassed cuz who's going to believe that I lost my Viagra...
Halloween's coming up. So is my birthday! LittleK wants to use her lion suit from 2 years ago, and T just wants to be a black cat. We found a panda suit for R's costume. I'll be the oxygen lady.
Speaking of oxygen, Lincare has set me up with a portable liquid O2 system. It just means that the little bag on my shoulder is much lighter, the supply lasts longer (8hrs), and it makes a loud PUFF noise when I inhale. The girls say it sounds like I'm spitting. The metal tanks are heavier, last about 4 hours, and only make a tiny 'click' when I breathe in.
T had her presentation today, about Chief Joseph. She (and I) made a poster, wrote out 9 facts on index cards, practiced, and argued over what to wear. She does well speaking in front of the class - this year it's just harder to understand her because she's mithing tho many teeth.
....laundry, dishes, messes beckon...
Anyway, in my chaotic daily life as mom/chauffeur/really bad housekeeper, I somehow came up short about 40 Revatio pills. It's silly - I think I had them in the car one day, I think I threw away an empty (but was it?) bottle another day. So I called the specialty pharmacy to replace the missing medication, and found out my monthly supply of 90 pills would normally cost $900 !!!!!
Insurance pays for it, except for a $20 co-pay. Wow. I guess our insurance company rep was having a good-karma day because they decided to pay for my replacement stuff. I'm just a bit embarrassed cuz who's going to believe that I lost my Viagra...
Halloween's coming up. So is my birthday! LittleK wants to use her lion suit from 2 years ago, and T just wants to be a black cat. We found a panda suit for R's costume. I'll be the oxygen lady.
Speaking of oxygen, Lincare has set me up with a portable liquid O2 system. It just means that the little bag on my shoulder is much lighter, the supply lasts longer (8hrs), and it makes a loud PUFF noise when I inhale. The girls say it sounds like I'm spitting. The metal tanks are heavier, last about 4 hours, and only make a tiny 'click' when I breathe in.
T had her presentation today, about Chief Joseph. She (and I) made a poster, wrote out 9 facts on index cards, practiced, and argued over what to wear. She does well speaking in front of the class - this year it's just harder to understand her because she's mithing tho many teeth.
....laundry, dishes, messes beckon...
Friday, October 13, 2006
new niece!
I think I've fallen out of the habit of updating.
My sister just had a baby!!!! Welcome baby Delaney!
K's mom is home from a big trip to Europe, and she sounds like she's doing well after some difficulties on the way home. Time to heal.
The seasons have definitely changed... we have to wear socks and jackets every day now. I'm really tired of the wind, haha. In the car I crank up the heat until LittleK whines "MAMA I'M HOT!"
BabyR is cutting four teeth on the top and one on the bottom, all at once. Ouch, huh? I love his funny toothless grin but won't see it again unless he takes up hockey.
K is done with bow-hunting and now rifle season has started. Hooray. He has a race tomorrow morning (Silent Trails Memorial) during the girls' final soccer games. Then more hunting on Sunday.
I've got a clutter problem and I've been preoccupied with it lately, but not enough to do anything about it. It's just another way of heaping on the guilt, on top of all the mommy-guilt etc.
T has glasses (bifocals!) for reading and schoolwork. She lost them today and didn't tell me until nearly 5 o'clock, but the principal was still at the school and we made it there before she left. The glasses were in the coat closet. I can deal with T's problems so much better than LittleK's because K's whining just pushes the big anger button inside of me and I lose patience. She seems to be really horrible only around late afternoon, when she's fighting a nap.
I'm pretty much done with all the nasty steroid side-effects. I'm only on 2mg a day! I feel normal except for my hip and shoulder pain. My hair falls out in big fistfuls, hopefully that will stop soon.
What's funny is that it's been about 4 months of having oxygen all the time, and only three strangers have blurted out big nosy questions. One Safeway cashier practically yelled at me "What's wrong with you??". I told him I have heart & lung diseases, and I herded the kids out the door. Another (elderly) oxygen user at WalMart looked at me with a big sad face and said, "This? At your age? Awwww". I just laughed and said I was used to it. That same day, some teenager at Burger King yelled across the room "HEY why are you on OXYGEN??". I just told him I got sick. So I just have to remember how weird it must be to see some young-ish mom doing mom-stuff out in public wearing a nasal cannula and herding two chatty girls and a baby around.
Anyway, the only news on that front is that my appointment with the PH specialists in Denver will be December 12th. It seems so far away.
Time to go cuddle up in a blanket and knit.
My sister just had a baby!!!! Welcome baby Delaney!
K's mom is home from a big trip to Europe, and she sounds like she's doing well after some difficulties on the way home. Time to heal.
The seasons have definitely changed... we have to wear socks and jackets every day now. I'm really tired of the wind, haha. In the car I crank up the heat until LittleK whines "MAMA I'M HOT!"
BabyR is cutting four teeth on the top and one on the bottom, all at once. Ouch, huh? I love his funny toothless grin but won't see it again unless he takes up hockey.
K is done with bow-hunting and now rifle season has started. Hooray. He has a race tomorrow morning (Silent Trails Memorial) during the girls' final soccer games. Then more hunting on Sunday.
I've got a clutter problem and I've been preoccupied with it lately, but not enough to do anything about it. It's just another way of heaping on the guilt, on top of all the mommy-guilt etc.
T has glasses (bifocals!) for reading and schoolwork. She lost them today and didn't tell me until nearly 5 o'clock, but the principal was still at the school and we made it there before she left. The glasses were in the coat closet. I can deal with T's problems so much better than LittleK's because K's whining just pushes the big anger button inside of me and I lose patience. She seems to be really horrible only around late afternoon, when she's fighting a nap.
I'm pretty much done with all the nasty steroid side-effects. I'm only on 2mg a day! I feel normal except for my hip and shoulder pain. My hair falls out in big fistfuls, hopefully that will stop soon.
What's funny is that it's been about 4 months of having oxygen all the time, and only three strangers have blurted out big nosy questions. One Safeway cashier practically yelled at me "What's wrong with you??". I told him I have heart & lung diseases, and I herded the kids out the door. Another (elderly) oxygen user at WalMart looked at me with a big sad face and said, "This? At your age? Awwww". I just laughed and said I was used to it. That same day, some teenager at Burger King yelled across the room "HEY why are you on OXYGEN??". I just told him I got sick. So I just have to remember how weird it must be to see some young-ish mom doing mom-stuff out in public wearing a nasal cannula and herding two chatty girls and a baby around.
Anyway, the only news on that front is that my appointment with the PH specialists in Denver will be December 12th. It seems so far away.
Time to go cuddle up in a blanket and knit.
Tuesday, October 03, 2006
altitude confusion
Bill-paying day. Now we have $500 propane payments every month on top of everything else...
I saw the cardiologist on the 26th and asked again about the altitude effects. He's the one who initially said I should move ASAP to somewhere with more oxygen in the air. Now he says the supplemental 02 I have is compensating for living at high altitude. So both K & I are confused. All four doctors seem to change their minds about it each time we see them! I'm still pretty much set on moving to Anchorage.
Tomorrow I have an appointment with the internist. Since my pulmonologist in Cheyenne is leaving private practice and cancelled my November 30th appointment, I'll see if this local guy will refer me to the PH specialists in Denver. I'm curious to see if they'll do a heart cath for an exact arterial pressure, and if there's a drug trial they might be able to enroll me in. It would be good to get their opinion on the altitude thing too.
Now to begin another playgroup/ballet/soccer day!
I saw the cardiologist on the 26th and asked again about the altitude effects. He's the one who initially said I should move ASAP to somewhere with more oxygen in the air. Now he says the supplemental 02 I have is compensating for living at high altitude. So both K & I are confused. All four doctors seem to change their minds about it each time we see them! I'm still pretty much set on moving to Anchorage.
Tomorrow I have an appointment with the internist. Since my pulmonologist in Cheyenne is leaving private practice and cancelled my November 30th appointment, I'll see if this local guy will refer me to the PH specialists in Denver. I'm curious to see if they'll do a heart cath for an exact arterial pressure, and if there's a drug trial they might be able to enroll me in. It would be good to get their opinion on the altitude thing too.
Now to begin another playgroup/ballet/soccer day!
Saturday, September 23, 2006
latest echo
I don't know why but my body's put the brakes on the pulmonary artery pressure decrease.
Last week my pressure came out at 79, which is still less than the 83 measured in late June. But I want it to be another 20 mmHg less, at least. I called the pulmonologist's office yesterday to find out if she wants to make medication dose changes... but they don't have the echo results yet! I'm very unimpressed.
The kids are doing great in school/soccer/ballet. T treats us all now & then with EasyBake desserts and LittleK loves to wah-wah on her teeny-tiny violin, so those birthday gifts were a good idea. BabyR's crawling and showing more personality. K's been hunting the 'One that Got Away'. I've been trying to knit a little and keep up with laundry. Winter hit us this weekend and I'm remembering just how much this house needs major weatherization work. I'm so COLD all the time!
My face is quite a bit less scary, thanks to only 5mg of prednisone a day. I'm alot more into my oxygen routine... so life is slowly reaching some stage of 'normal'.
Last week my pressure came out at 79, which is still less than the 83 measured in late June. But I want it to be another 20 mmHg less, at least. I called the pulmonologist's office yesterday to find out if she wants to make medication dose changes... but they don't have the echo results yet! I'm very unimpressed.
The kids are doing great in school/soccer/ballet. T treats us all now & then with EasyBake desserts and LittleK loves to wah-wah on her teeny-tiny violin, so those birthday gifts were a good idea. BabyR's crawling and showing more personality. K's been hunting the 'One that Got Away'. I've been trying to knit a little and keep up with laundry. Winter hit us this weekend and I'm remembering just how much this house needs major weatherization work. I'm so COLD all the time!
My face is quite a bit less scary, thanks to only 5mg of prednisone a day. I'm alot more into my oxygen routine... so life is slowly reaching some stage of 'normal'.
Wednesday, September 13, 2006
survived this week
So the birthday party went great, thanks to everyone who celebrated with us, especially Gramma and Grampy who brought lots of salmon. The weather wasn't so great but we all had fun and stuffed ourselves. G/G stayed until yesterday to help me with the kids while K left for training in Florida. We miss you guys!!!!
T auditioned for the Nutcracker ballet on Monday. I think we'll know by next week if she's been chosen to be part of the cast. Soccer's going okay, although the whole thing is not as organized as past years, and T's coach isn't available until 615pm on T/Th - so we're there for LittleK at 530 and don't finish with T until 7! Girl Scouts will be fun this fall, T has a new troop with two great moms for leaders.
Tomorrow the girls have their physicals, and I have an echocardiogram. I hope we're all healthy. I'm really tired and can't wait for K to get back.
Tomorrow I'll post my pressures from the echo, so come on back!
T auditioned for the Nutcracker ballet on Monday. I think we'll know by next week if she's been chosen to be part of the cast. Soccer's going okay, although the whole thing is not as organized as past years, and T's coach isn't available until 615pm on T/Th - so we're there for LittleK at 530 and don't finish with T until 7! Girl Scouts will be fun this fall, T has a new troop with two great moms for leaders.
Tomorrow the girls have their physicals, and I have an echocardiogram. I hope we're all healthy. I'm really tired and can't wait for K to get back.
Tomorrow I'll post my pressures from the echo, so come on back!
Saturday, September 02, 2006
all new, all good
T had a great first week of school. Right off the bat she has a three-day weekend so I'm letting the kids stay up late! The week or so before school started we tried to get out and do fun stuff but the weather was horrible. We did make it to the orientation for Little K's preschool and decided she may as well just go there again, until Christmas at least. No need for any big change at this point. I can still be a teacher's aide, bring snacks and make playdough.
After Labor Day, both girls will continue with ballet, start the new soccer session, the big joint birthday party happens, T has Day Camp at school, LittleK will start school on the 11th - which is the same day T joins a new Brownie Scout troop and also auditions for this year's production of the Nutcracker. My head may go spinning directly off of my body by the end of the week.
K is now in hunting mode so that means alot of single-parenting until he pulls into the driveway with a dead elk in the truck bed. I'm grateful for the meals it provides but the cost adds up with all the driving & time away. I'd almost rather buy a side of beef or fill up the freezer with bison meat from the farmers' market.
So there you have it. Things are looking up. One of the best things on Tuesday was being told I can now taper the prednisone down to 10 mg for two weeks starting Monday, then 5 mg after that, and possibly go off of it completely. Goodbye, 5 o'clock shadow!!
After Labor Day, both girls will continue with ballet, start the new soccer session, the big joint birthday party happens, T has Day Camp at school, LittleK will start school on the 11th - which is the same day T joins a new Brownie Scout troop and also auditions for this year's production of the Nutcracker. My head may go spinning directly off of my body by the end of the week.
K is now in hunting mode so that means alot of single-parenting until he pulls into the driveway with a dead elk in the truck bed. I'm grateful for the meals it provides but the cost adds up with all the driving & time away. I'd almost rather buy a side of beef or fill up the freezer with bison meat from the farmers' market.
Today the kids and I bought more birthday party stuff and also printed up some of the pictures Grandpa J let me scan onto a CD a few years ago. Our living room has plenty of my relatives' photographs but none of K's... we also need Grandma R's family represented. I love old pictures.
This is K's Grandma Minnie on the left, with my Great-Grandma Ida on the right.
Thursday morning, K and I took the two younger kids to Cheyenne and we saw my doctors. The rheumatologist and I didn't have much to discuss - he had some labs done which we'll know results of next week. The pulmonologist answered many questions, including:This is K's Grandma Minnie on the left, with my Great-Grandma Ida on the right.
- what NYHA functional stage am I classified in? Stage I- Stage II (explanation here)
- should I be trying NAC (N-acetylcysteine)? No
- did I have sleep apnea back when we did my overnight pulse-ox test? No
- should I be tested for steroid-induced diabetes? Yes
- should I start Pulmonary Rehab? Yes (but it's not available in our town)
- did my lupus inflammation cause the fibrosis, in turn causing the hypertension? Yes, sort of...
- should I have a right heart catheterization done? No, not with my high pressure levels
- and of course, how long could I live? It's hard to say with lupus complicating things, but she thinks I have a good chance of surviving to see my kids head off to college!
So there you have it. Things are looking up. One of the best things on Tuesday was being told I can now taper the prednisone down to 10 mg for two weeks starting Monday, then 5 mg after that, and possibly go off of it completely. Goodbye, 5 o'clock shadow!!
Monday, August 21, 2006
Thursday, August 17, 2006
not so bleak
Happy Birthday W!!!!
I rescheduled my rheumatologist & pulmonologist appointments from yesterday to August 31st. K wanted to be there but had to fly all day yesterday. We were sort of confused about why they wanted me to have the appointments in the first place... I think I need to set up another echocardiogram (or maybe a right heart cath?) between now and the 31st, so the docs and I will have something to talk about.
I've been kinda flaky with my medicine. I also still go without the tube up my nose once in awhile. I could probably eat healthier food... but at least I got a start on the exercise idea. I bought a jogging stroller to walk R around our neighborhood loop, which is a dirt road not compatible with the mini-stroller I use everywhere else. Our friend offered me her jogging stroller, so I took the other one back to the store. Now I just need to replace the inner tube on the friend's stroller. Maybe someday soon my thigh and butt muscles will make a reappearance.
This past week I got onto a web-board for people with pulmonary hypertension. http://www.phcentral.org Some of the people there have been surviving for 5 or more years since diagnosis! So that gives me some hope- especially with the newer medications that are coming out, Tracleer and Thelin.
We've been gearing up for school and for birthday parties. I still haven't enrolled LittleK anywhere, but her old school has her on their roster. We may keep her there, but I just don't know if I want to be that involved anymore. I did get the girls signed up for soccer. It'll be LittleK's first year and T's third I think.
That's about all of the really fascinating stuff going on around here.
I rescheduled my rheumatologist & pulmonologist appointments from yesterday to August 31st. K wanted to be there but had to fly all day yesterday. We were sort of confused about why they wanted me to have the appointments in the first place... I think I need to set up another echocardiogram (or maybe a right heart cath?) between now and the 31st, so the docs and I will have something to talk about.
I've been kinda flaky with my medicine. I also still go without the tube up my nose once in awhile. I could probably eat healthier food... but at least I got a start on the exercise idea. I bought a jogging stroller to walk R around our neighborhood loop, which is a dirt road not compatible with the mini-stroller I use everywhere else. Our friend offered me her jogging stroller, so I took the other one back to the store. Now I just need to replace the inner tube on the friend's stroller. Maybe someday soon my thigh and butt muscles will make a reappearance.
This past week I got onto a web-board for people with pulmonary hypertension. http://www.phcentral.org Some of the people there have been surviving for 5 or more years since diagnosis! So that gives me some hope- especially with the newer medications that are coming out, Tracleer and Thelin.
We've been gearing up for school and for birthday parties. I still haven't enrolled LittleK anywhere, but her old school has her on their roster. We may keep her there, but I just don't know if I want to be that involved anymore. I did get the girls signed up for soccer. It'll be LittleK's first year and T's third I think.
That's about all of the really fascinating stuff going on around here.
Wednesday, August 09, 2006
Tooth!
R has a tooth! It's his lower left front tooth, and it cut through either yesterday or the day before. Three months of unbelievable drooliness has finally resulted in something!
He's also finding out how to pull himself around the floor while on his tummy, but he's had a few head-vs-floor incidents so he's a little nervous about going from sitting to combat-crawling on the hardwood. His chicken pox scabs have mostly gone away - there are a few spots on his chest that might scar but at least we got through the whole ordeal without much pain.
I actually had some energy and motivation to take care of some annoying little things around the house yesterday (after playgroup, lunch, swimming, bill-paying, etc.). I weeded the little rock-pile next to the driveway, scrubbed R's high chair, helped the girls put their clothes away, and dusted a bit.
Today I'll be taking old clothes and shoes to the Salvation Army (finally!) and I might even start on the playroom... or I might not. What I'd like to do is somehow pull out the dead tree stumps in the front yard, along with all the metal tree-stakes. Work has stalled on the backyard. K said he doesn't know what he's going to do with it next. I'd be happy with just seeding part of it and putting down a few flagstones. And a swingset!
He's also finding out how to pull himself around the floor while on his tummy, but he's had a few head-vs-floor incidents so he's a little nervous about going from sitting to combat-crawling on the hardwood. His chicken pox scabs have mostly gone away - there are a few spots on his chest that might scar but at least we got through the whole ordeal without much pain.
I actually had some energy and motivation to take care of some annoying little things around the house yesterday (after playgroup, lunch, swimming, bill-paying, etc.). I weeded the little rock-pile next to the driveway, scrubbed R's high chair, helped the girls put their clothes away, and dusted a bit.
Today I'll be taking old clothes and shoes to the Salvation Army (finally!) and I might even start on the playroom... or I might not. What I'd like to do is somehow pull out the dead tree stumps in the front yard, along with all the metal tree-stakes. Work has stalled on the backyard. K said he doesn't know what he's going to do with it next. I'd be happy with just seeding part of it and putting down a few flagstones. And a swingset!
Thursday, August 03, 2006
Summer days
Sorry for the long blog-break.
Towards the end of July, K bought two kayaks and we took them out a couple of times. We had a blast!
Other happenings: K took the girls camping, I took the kids to Cheyenne Frontier Days (parade, carnival rides), T got her loooooong hair cut and donated it to Locks of Love, R got chicken pox, a heat wave came and went, and K's baseball season ended.
Today we're going to see another kid movie at the Wyo theater, then check out the county fair Family Fun Night. I hear they'll have free admission, free food, and pig-wrestling. K's flying until 9 tonight so he'll be sorry he missed the pig-wrestling I'm sure.
No news health-wise... my face is a little less huge, and I've been cheating with the oxygen, leaving it off a few hours now & then. I feel fine. My next appointments in Cheyenne were rescheduled from August 1st to the 16th. I emailed ANMC in Anchorage, asking about their pulmonology department. They replied that they do have a pulmonologist on staff, and they coordinate/refer lung transplants through the University of Washington hospital in Seattle. Good to know.
Tuesday, July 18, 2006
no real topic here
Laramie Jubilee Days are over. It's the town's extended celebration of July 4th, basically, and an excuse to have a rodeo. We missed the rodeo stuff as usual but this year we made it to the carnival rides (twice), the free pancake breakfast, and the parade. We really only go to the parade so the kids can scramble to pick up candy thrown at them by float-riders and people in firetrucks. Those bags of candy turn into pretty big bargaining chips when it comes to behavior modification... "PLEASE clean up your room." "NO!" "okay, no more candy..."
When the National Geographic magazine comes in the mail each month, I have to race to read it before it ends up in the contaminated magazine pile - SO, I got to it first this month and read a pretty persuasive article about environmentalism. It made me want to trade in the minivan for a hybrid and set up a windmill in the backyard. Go ahead and call me a tree-hugging, bleeding-heart liberal! The one thing I agree with President Bush about is that we are "addicted to oil." Here I sit in a state overflowing with money from the coal industry, and with ties to another state loving these record-high crude prices...
I've been trying to knit more lately. I changed projects, sticking with cables but moving to something much smaller than a blanket - a baby sweater. I'm using the wool I bought in Bemidji, a cream-colored homespun that's kind of rough but looks good with the aran pattern. I want to finish it quickly but of course I've already had to rip it apart twice. With R getting fatter every day, I've got motivation to work faster and more often (and of course it's another excuse to put off housework).
I seem to be spending more time thinking about what exactly I want out of life. I've decided that I really only want more laughter, a sense of balance, and peacefulness. There's plenty of love around me, I don't crave respect or recognition or even anything spiritual... I guess after being smacked down by lupus and lung disease, I just want to pick myself up and make the best of it. All I need are some laughs, some time feeling normal again, and pieces of quiet here and there.
When the National Geographic magazine comes in the mail each month, I have to race to read it before it ends up in the contaminated magazine pile - SO, I got to it first this month and read a pretty persuasive article about environmentalism. It made me want to trade in the minivan for a hybrid and set up a windmill in the backyard. Go ahead and call me a tree-hugging, bleeding-heart liberal! The one thing I agree with President Bush about is that we are "addicted to oil." Here I sit in a state overflowing with money from the coal industry, and with ties to another state loving these record-high crude prices...
I've been trying to knit more lately. I changed projects, sticking with cables but moving to something much smaller than a blanket - a baby sweater. I'm using the wool I bought in Bemidji, a cream-colored homespun that's kind of rough but looks good with the aran pattern. I want to finish it quickly but of course I've already had to rip it apart twice. With R getting fatter every day, I've got motivation to work faster and more often (and of course it's another excuse to put off housework).
I seem to be spending more time thinking about what exactly I want out of life. I've decided that I really only want more laughter, a sense of balance, and peacefulness. There's plenty of love around me, I don't crave respect or recognition or even anything spiritual... I guess after being smacked down by lupus and lung disease, I just want to pick myself up and make the best of it. All I need are some laughs, some time feeling normal again, and pieces of quiet here and there.
Wednesday, July 12, 2006
Today I learned about...
SHINGLES!!! Google that under images for your Gross-Out of the Day.
My leg sprouted a slight rash last Friday so I put some tea-tree oil on it. By Sunday I knew it needed a doctor's attention but didn't stop by there until yesterday. He couldn't see me until this morning... and as suspected it is shingles. Those 28 little compartments in my pill-organizer are getting pretty crowded!
July 4th was a blast, Thank You L & J All of those ooooh's and aaaaaaah's from the kids for every single fireworks blast were priceless. The food was delicious too.
Other fun stuff we've done lately: playdates at the park, alpaca day at the library, many many birthday parties, downtown carnival rides, and watching K rototill the backyard. It's so strange to look out back and not see the wood-scraps and fence-scraps poking out from stands of overgrown weeds of every invasive species... There's a flat yard of just dirt. We still have the vacant chicken coop and the little barren garden plots, but having the weed-forest disappear will surely score us some points at the upcoming homeowners' association meeting. hooray
Not much else is new around here. K's gone again for a couple of days. I don't have any more appointments until August I think, unless some other opportunistic infection comes along.
Gotta go. I've been staying up WAY too late these days...
My leg sprouted a slight rash last Friday so I put some tea-tree oil on it. By Sunday I knew it needed a doctor's attention but didn't stop by there until yesterday. He couldn't see me until this morning... and as suspected it is shingles. Those 28 little compartments in my pill-organizer are getting pretty crowded!
July 4th was a blast, Thank You L & J All of those ooooh's and aaaaaaah's from the kids for every single fireworks blast were priceless. The food was delicious too.
Other fun stuff we've done lately: playdates at the park, alpaca day at the library, many many birthday parties, downtown carnival rides, and watching K rototill the backyard. It's so strange to look out back and not see the wood-scraps and fence-scraps poking out from stands of overgrown weeds of every invasive species... There's a flat yard of just dirt. We still have the vacant chicken coop and the little barren garden plots, but having the weed-forest disappear will surely score us some points at the upcoming homeowners' association meeting. hooray
Not much else is new around here. K's gone again for a couple of days. I don't have any more appointments until August I think, unless some other opportunistic infection comes along.
Gotta go. I've been staying up WAY too late these days...
Tuesday, July 04, 2006
T's "Best Summer Day Yet"
Happy 4th!
We're home, resting after a long morning at the park. The city throws a big party, with free watermelon, ice cream, lemonade, jumping castles, etc. There are also booths set up by local businesses and community organizations giving out freebies, so halfway through the park the parents are juggling all the junk the kids don't want to carry.
The girls were in the kids' bike parade at 9:30... then we listened to the community band play a bit, and wandered around. I saw lots of people with oxygen! Most of them were in wheelchairs though and looking pretty grumpy.
So Thursday I had my echo and Friday I saw the internist. He didn't have the echo report from the radiologist, so he asked me how it went... The tech said my numbers are basically in the same range as they were on the previous echo in May. So that's not bad news, but it's not what we were hoping for, either. No pressure decrease. Now I have to increase the dose of Diltiazem. I'm on my last few pills of 180mg and will change to 240's in a few days. Then by the next echo in August we'll see if the pressure comes down. My legs stopped hurting! I haven't noticed much of a change from decreasing prednisone yet but that probably takes more time.
K's been home most of the week, that's been really great. He lets me get away with being lazy! The girls get to play baseball with him every night in the front yard. He got a good start on killing part of the weed forest in the backyard. The girls and I are hoping for a swingset to put back there this summer...
BabyR is definitely learning that fake-crying will get results, and that it sucks to be sitting anywhere but in Mom or Dad's lap. He's really so mellow... he was as calm as could be yesterday during the torrential rain/thunderstorm that passed right through the neighborhood. We give him more and more solid foods each day: pears, apples, baby cookies, cheerios. He's kinda fat! I have to clean the stinky lint-balls and cookie-paste out of his neck rolls every day. For some reason he loves his neck to be tickled. When he smiles, his eyes look like Uncle Brian's.
Tonight we'll be going to our friends' house for barbecued chicken and other tasty stuff. K made his favorite cheesecake for tonight, coffee-brandy. There'll be some fireworks in town, and we've been promised some good seats on the roof of our friends' house, so it should be a good time.
We're home, resting after a long morning at the park. The city throws a big party, with free watermelon, ice cream, lemonade, jumping castles, etc. There are also booths set up by local businesses and community organizations giving out freebies, so halfway through the park the parents are juggling all the junk the kids don't want to carry.
The girls were in the kids' bike parade at 9:30... then we listened to the community band play a bit, and wandered around. I saw lots of people with oxygen! Most of them were in wheelchairs though and looking pretty grumpy.
So Thursday I had my echo and Friday I saw the internist. He didn't have the echo report from the radiologist, so he asked me how it went... The tech said my numbers are basically in the same range as they were on the previous echo in May. So that's not bad news, but it's not what we were hoping for, either. No pressure decrease. Now I have to increase the dose of Diltiazem. I'm on my last few pills of 180mg and will change to 240's in a few days. Then by the next echo in August we'll see if the pressure comes down. My legs stopped hurting! I haven't noticed much of a change from decreasing prednisone yet but that probably takes more time.
K's been home most of the week, that's been really great. He lets me get away with being lazy! The girls get to play baseball with him every night in the front yard. He got a good start on killing part of the weed forest in the backyard. The girls and I are hoping for a swingset to put back there this summer...
BabyR is definitely learning that fake-crying will get results, and that it sucks to be sitting anywhere but in Mom or Dad's lap. He's really so mellow... he was as calm as could be yesterday during the torrential rain/thunderstorm that passed right through the neighborhood. We give him more and more solid foods each day: pears, apples, baby cookies, cheerios. He's kinda fat! I have to clean the stinky lint-balls and cookie-paste out of his neck rolls every day. For some reason he loves his neck to be tickled. When he smiles, his eyes look like Uncle Brian's.
Tonight we'll be going to our friends' house for barbecued chicken and other tasty stuff. K made his favorite cheesecake for tonight, coffee-brandy. There'll be some fireworks in town, and we've been promised some good seats on the roof of our friends' house, so it should be a good time.
Tuesday, June 27, 2006
Out and about
I've been thinking about writing a new entry but haven't gotten around to it until now.
K took the girls camping, so baby and I are enjoying the peace and quiet. Except I'm doing laundry at midnight so it's not really that quiet.
We had a really nice weekend - Saturday we spent at Rob Roy Reservoir boating and kayaking with K's work friends. T still loves to paddle a kayak, LittleK still whines and cries and needs to pee as soon as she's in a boat far from the shore. Baby liked the wind in his face when we took the kids out in the inflatable boat... but it wasn't long before he was whining and crying too.
Sunday was baseball day, at the CSU field in Fort Collins. It was too hot there so I took the kids to the play area at the mall. We got back to the field in time to visit with friends and see the end of the game, another devastating loss for the SkySox.
Since then we've just been doing the routine: ballet, playgroup, wading pool at the park, and now waiting for payday so I can pay bills. Thursday I'll have another echo, Friday I'll see the internist.
I'm adjusting to the portable O2 pretty well. I hate the shoulder bag that comes with the tank, it flips upside down if some stupid snap isn't on right and it's just not balanced. Today I shopped around for a replacement and found a backpack with enough room for the O2 tank, all of R's baby stuff, and my junk too! It even has an MP3-cord-hole I can put the cannula tubing through. I guess the oxygen suppliers prefer NOT to start people out on liquid oxygen because of the hassle and expense... so I'll live with the metal tanks for now.
Healthwise I've been mostly okay - except the leg pains I had from the poison-antibiotic Levaquin have come back. I've had to take more Darvocet and even that sometimes hasn't helped. The pain seems to be worse if I've been sitting or lying down for a long time. It's an intense, throbbing feeling in the tendons of my right knee and left ankle, like they're going to explode... it makes me feel helpless enough to just cry, and it can last for hours or just five minutes.
K took the girls camping, so baby and I are enjoying the peace and quiet. Except I'm doing laundry at midnight so it's not really that quiet.
We had a really nice weekend - Saturday we spent at Rob Roy Reservoir boating and kayaking with K's work friends. T still loves to paddle a kayak, LittleK still whines and cries and needs to pee as soon as she's in a boat far from the shore. Baby liked the wind in his face when we took the kids out in the inflatable boat... but it wasn't long before he was whining and crying too.
Sunday was baseball day, at the CSU field in Fort Collins. It was too hot there so I took the kids to the play area at the mall. We got back to the field in time to visit with friends and see the end of the game, another devastating loss for the SkySox.
Since then we've just been doing the routine: ballet, playgroup, wading pool at the park, and now waiting for payday so I can pay bills. Thursday I'll have another echo, Friday I'll see the internist.
I'm adjusting to the portable O2 pretty well. I hate the shoulder bag that comes with the tank, it flips upside down if some stupid snap isn't on right and it's just not balanced. Today I shopped around for a replacement and found a backpack with enough room for the O2 tank, all of R's baby stuff, and my junk too! It even has an MP3-cord-hole I can put the cannula tubing through. I guess the oxygen suppliers prefer NOT to start people out on liquid oxygen because of the hassle and expense... so I'll live with the metal tanks for now.
Healthwise I've been mostly okay - except the leg pains I had from the poison-antibiotic Levaquin have come back. I've had to take more Darvocet and even that sometimes hasn't helped. The pain seems to be worse if I've been sitting or lying down for a long time. It's an intense, throbbing feeling in the tendons of my right knee and left ankle, like they're going to explode... it makes me feel helpless enough to just cry, and it can last for hours or just five minutes.
Wednesday, June 21, 2006
Dinosaur Puppets
Guess what? K is gone for yet another overnight trip to Jackson. The girls are all mixed up now about when he's supposed to be home and how long he'll be staying home when he gets back.
We were lazy bums today until K left, then we cleaned ourselves up and headed to the park for a couple of hours. The girls got to ride their bikes and run around barefooted until we all started getting hungry... which was about the same time the rain started coming down. Dumbo from Netflix was waiting for us at home, a convenient reward for half an hour of no fighting.
Monday I made it to the knitting group. The one man-knitter who goes there is stitching up a bikini for the shop's big bikini display. Tuesday we went to playgroup, and to the library for a big dinosaur-puppet show. There was a huge crowd of moms & kids. The kids had a blast watching and listening to the dino-guy who'd made 20-foot long dinosaur skeleton puppets out of foam and cardboard. There were some moms I knew there who either didn't recognize me or didn't feel comfortable approaching me and my big round oxygen-tubed face. I still forget how different I must look! Next week I can go down to 20mg of prednisone. yay for me
People have asked if this oxygen is helping. I really don't notice any difference. When I take it off just to have a break, I don't feel any worse. If anything has changed, it's all the PICKING I have to do from having a dried-out, blocked-up nose. Yuk! I actually seem to do more mouth-breathing with the oxygen on than without. June 29th, I'll have my next echocardiogram and hopefully my pressure will have gone down.
I'm about to fall asleep on this keyboard so I'd better head to bed.
We were lazy bums today until K left, then we cleaned ourselves up and headed to the park for a couple of hours. The girls got to ride their bikes and run around barefooted until we all started getting hungry... which was about the same time the rain started coming down. Dumbo from Netflix was waiting for us at home, a convenient reward for half an hour of no fighting.
Monday I made it to the knitting group. The one man-knitter who goes there is stitching up a bikini for the shop's big bikini display. Tuesday we went to playgroup, and to the library for a big dinosaur-puppet show. There was a huge crowd of moms & kids. The kids had a blast watching and listening to the dino-guy who'd made 20-foot long dinosaur skeleton puppets out of foam and cardboard. There were some moms I knew there who either didn't recognize me or didn't feel comfortable approaching me and my big round oxygen-tubed face. I still forget how different I must look! Next week I can go down to 20mg of prednisone. yay for me
People have asked if this oxygen is helping. I really don't notice any difference. When I take it off just to have a break, I don't feel any worse. If anything has changed, it's all the PICKING I have to do from having a dried-out, blocked-up nose. Yuk! I actually seem to do more mouth-breathing with the oxygen on than without. June 29th, I'll have my next echocardiogram and hopefully my pressure will have gone down.
I'm about to fall asleep on this keyboard so I'd better head to bed.
Friday, June 16, 2006
If my world were perfect...
prednisone would come with a year's supply of hair removal stuff or complimentary visits to the laser hair removal day salon/spa
oxygen suppliers would give out free bottles of nasal saline spray and boxes of Puffs Plus
lungs, kidneys, hearts would be indestructible
I'd have a remote control for my three-year-old for when the whining starts
grocery stores would employ Parking Lot Babysitters so moms could run in for that all-important five-minute purchase
the husband would have a little switch in the back of his head to go from 'silent' to 'communication mode'
oxygen suppliers would give out free bottles of nasal saline spray and boxes of Puffs Plus
lungs, kidneys, hearts would be indestructible
I'd have a remote control for my three-year-old for when the whining starts
grocery stores would employ Parking Lot Babysitters so moms could run in for that all-important five-minute purchase
the husband would have a little switch in the back of his head to go from 'silent' to 'communication mode'
Monday, June 12, 2006
Appointment Day
Over the weekend K was able to patch up the section of roof that was peeling off, mow the front yard, and mow the leach field out back. He also did alot of front-yard baseball with the girls, and we all went to Greeley on Sunday for his real baseball game. Then he let me know in his own subtle way that he'd be leaving for a 3-day trip to Jackson.
So he was able to make it to Cheyenne with me and baby for my appointment today before the Jackson flight. This time I saw the rheumatologist, who made some adjustments in my medication dosages and explained some high and low lab values. He said my lupus flare is pretty much over, and now we need to focus on my lung problems. There was no discussion this time about moving to a lower altitude... That can wait a bit longer.
I got a prescription for Boniva, which is to fight osteoporosis, another side effect of the prednisone. When I filled the prescriptions later today at Safeway, I paid a total of $70 for 4 meds - then got home and realized that the ONE Boniva pill costs $40!!!! It's one pill, in a fold-out cardboard holder, to be taken once a month... and it costs about what I've paid to have my hair done in the last year! (my hair looks like crap) There was a $20 coupon with it but the pharmacist couldn't get the computer to accept it.
Somewhere between the appointment, picking up the girls, getting T to her new ballet class, saying goodbye to K, and getting dinner together, I made it to the oxygen place to get set up with the full-time O2 stuff. It turned into one of those moments of realizing I had never, ever imagined myself doing what I was doing. Refereeing two cat-fighting daughters and bouncing a baby around, while fitting tubes in my nose and a portable oxygen pack on my shoulder was just... bizarre.
So now I'm enjoying a little peace while the kids sleep. Tomorrow starts early with soccer camp for T and ballet for LittleK, then playgroup and an attempt at laundry.
So he was able to make it to Cheyenne with me and baby for my appointment today before the Jackson flight. This time I saw the rheumatologist, who made some adjustments in my medication dosages and explained some high and low lab values. He said my lupus flare is pretty much over, and now we need to focus on my lung problems. There was no discussion this time about moving to a lower altitude... That can wait a bit longer.
I got a prescription for Boniva, which is to fight osteoporosis, another side effect of the prednisone. When I filled the prescriptions later today at Safeway, I paid a total of $70 for 4 meds - then got home and realized that the ONE Boniva pill costs $40!!!! It's one pill, in a fold-out cardboard holder, to be taken once a month... and it costs about what I've paid to have my hair done in the last year! (my hair looks like crap) There was a $20 coupon with it but the pharmacist couldn't get the computer to accept it.
Somewhere between the appointment, picking up the girls, getting T to her new ballet class, saying goodbye to K, and getting dinner together, I made it to the oxygen place to get set up with the full-time O2 stuff. It turned into one of those moments of realizing I had never, ever imagined myself doing what I was doing. Refereeing two cat-fighting daughters and bouncing a baby around, while fitting tubes in my nose and a portable oxygen pack on my shoulder was just... bizarre.
So now I'm enjoying a little peace while the kids sleep. Tomorrow starts early with soccer camp for T and ballet for LittleK, then playgroup and an attempt at laundry.
Friday, June 09, 2006
comings and goings
Big news today: K is HOME!!!!! Welcome Home Honey!!!
After almost a whole month without him, the kids have their dad back... so we're all happy about that but now Gramma and Grampy have to leave us. They've been supportive and helpful in every possible way - Thank You, Mom & John
I didn't get a call from the oxygen provider today so I guess I'll start the full-time O2 on Monday. I'm not looking forward to wearing a nasal cannula all the time and carrying a tank everywhere. I wonder if I'll ever be off oxygen.
p.s. my face is not as huge as it used to be but it could still use a good shave or another Nair treatment!!! EW!!
After almost a whole month without him, the kids have their dad back... so we're all happy about that but now Gramma and Grampy have to leave us. They've been supportive and helpful in every possible way - Thank You, Mom & John
I didn't get a call from the oxygen provider today so I guess I'll start the full-time O2 on Monday. I'm not looking forward to wearing a nasal cannula all the time and carrying a tank everywhere. I wonder if I'll ever be off oxygen.
p.s. my face is not as huge as it used to be but it could still use a good shave or another Nair treatment!!! EW!!
Thursday, June 08, 2006
oxygen oxygen oxygen
Today we loaded up the minivan and headed to Cheyenne for a picnic in the park by the Botanical Gardens. After that, Grampy and the girls walked through the gardens while Mom, baby and I went to my doctor's appointment.
The doctor was thrilled at how much and how quickly my pulmonary arterial pressure went down. I guess all 3 docs were sort of freaked out at the 113... Today she said it's possible and it would be great to get that number down to the 50's or 60's. She also said that 24-hr oxygen won't make up for all the negative effects of living at 7200', so moving to a lower altitude would be a good idea. My O2 sat was low enough today that now I have to be on oxygen 24/7. Hooray.
Mom got to ask her some questions, hard questions about life expectancy and the whole altitude thing. There's no real answer right now as far as life expectancy but the positives according to Dr. B. are that I'm young, and that I don't have primary pulmonary hypertension but secondary.
The good news is that I can taper this prednisone down to 20 in a couple of weeks. Hooray!
The doctor was thrilled at how much and how quickly my pulmonary arterial pressure went down. I guess all 3 docs were sort of freaked out at the 113... Today she said it's possible and it would be great to get that number down to the 50's or 60's. She also said that 24-hr oxygen won't make up for all the negative effects of living at 7200', so moving to a lower altitude would be a good idea. My O2 sat was low enough today that now I have to be on oxygen 24/7. Hooray.
Mom got to ask her some questions, hard questions about life expectancy and the whole altitude thing. There's no real answer right now as far as life expectancy but the positives according to Dr. B. are that I'm young, and that I don't have primary pulmonary hypertension but secondary.
The good news is that I can taper this prednisone down to 20 in a couple of weeks. Hooray!
Wednesday, June 07, 2006
Settling back in
Today's exciting news: babyR ate real food!!! He finally was able to keep some pureed peas in his mouth and actually swallow the stuff! So we'll be buying more of the 50cent jars of food than we will of the $25 cans of formula.
Last night we got back from Albuquerque. Everyone had a great time - but 12 hours each way in a minivan with three kids in crazy HOT weather is just something to do maybe once every other year. Add to that a three-year-old announcing "I HAVE TO POOOOOOOP!" every hour and never once actually pooping...
Aunt Wanda lives in a great big, new, air-conditioned house with a giant master bedroom she gave up for me and the kids to sleep in. She and her extended family are generous, big-hearted people. All the relatives were happy to see each other and we shared good meals, good conversation and some fun times shopping & going to the aquarium and botanical gardens. The kids had fun, everyone loved baby.
Last Friday at the circus we had a good time, too. It's a bit strange trying to maintain the "Oh we're having so much fun aren't we kids?" sense of wonder when you're the parent forking out the bucks after getting "free" tickets & wondering how all the performers can work that hard for probably next to nothing. The girls had fun, baby fell asleep in spite of the noise and heat, Gramma and Grampy helped keep spirits up - especially when I, Mama Grinch, refused to stand in line forever to pay for an elephant ride. It's amazing how kids can instantly forget how much fun they had in the past two hours when you disappoint them at the end of some event. "Wasn't that cotton candy delicious?" "I WANT TO RIDE ON THE ELEPHANT!!!!"
No new health problems... I have some scars & bruises that won't heal, mostly on my feet, and I think they make anyone who sees them gross out. Decreasing the prednisone has taken away a bunch of that crazy energy I had a while back, and my appetite isn't what it was either. Tomorrow I'll find out if the doctor wants me back up to 40 mg a day. And if she's mad that I decreased the dose on my own. And other stuff.
Last night we got back from Albuquerque. Everyone had a great time - but 12 hours each way in a minivan with three kids in crazy HOT weather is just something to do maybe once every other year. Add to that a three-year-old announcing "I HAVE TO POOOOOOOP!" every hour and never once actually pooping...
Aunt Wanda lives in a great big, new, air-conditioned house with a giant master bedroom she gave up for me and the kids to sleep in. She and her extended family are generous, big-hearted people. All the relatives were happy to see each other and we shared good meals, good conversation and some fun times shopping & going to the aquarium and botanical gardens. The kids had fun, everyone loved baby.
Last Friday at the circus we had a good time, too. It's a bit strange trying to maintain the "Oh we're having so much fun aren't we kids?" sense of wonder when you're the parent forking out the bucks after getting "free" tickets & wondering how all the performers can work that hard for probably next to nothing. The girls had fun, baby fell asleep in spite of the noise and heat, Gramma and Grampy helped keep spirits up - especially when I, Mama Grinch, refused to stand in line forever to pay for an elephant ride. It's amazing how kids can instantly forget how much fun they had in the past two hours when you disappoint them at the end of some event. "Wasn't that cotton candy delicious?" "I WANT TO RIDE ON THE ELEPHANT!!!!"
No new health problems... I have some scars & bruises that won't heal, mostly on my feet, and I think they make anyone who sees them gross out. Decreasing the prednisone has taken away a bunch of that crazy energy I had a while back, and my appetite isn't what it was either. Tomorrow I'll find out if the doctor wants me back up to 40 mg a day. And if she's mad that I decreased the dose on my own. And other stuff.
Wednesday, May 31, 2006
Big Day, Big Week
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.
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.
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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