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.

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.

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'

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.

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!!

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!

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.

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.

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:

• 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!

I feel okay. I'm just ugly with Cushing's syndrome - people stare, I try to hide my face with my hair or my hands. But most of the time I forget how different I look and just go out and do all the stuff I need to do. It helps if I remember to put mascara on and do something with my hair. My bones feel so crunchy! My spine and fingers and toes are super easy to crack. The worst thing I feel now is weakness in my legs when I try to walk up stairs. My thighs have wasted away and I need to get on some kind of exercise schedule to reverse that. Today I bought some Nair to get rid of the sideburns I've grown... LittleK helped point out some whiskers I'd missed while plucking the other day LOL

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.

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.