warmth!

It's a whole new world up here, we experienced 50 degrees over the weekend. The carrot seedlings the kids and I planted have sprouted, and all but the most shaded snow piles have melted away. We're on the verge of relocating Chena to the outside, where muddy paws belong. K's even hinted at the possibility of building the kids a treehouse... I'm daydreaming of a lawn, a patio, and a garden.
It may take me a while to emerge from hibernation though, since I still prefer to roam the house wearing my winter jacket, watching Jane Austen movies over and over again, barely getting housework done.
The kids and their dad love being outside! K's on a run right now. He took T with him last night - she followed him on her bicycle. It was a good way to make her forget about how I so cruelly made her leave the park fifteen minutes early.
Haircut Boy just woke up from his nap, so I'm off to sweep up sandwich crumbs and muddy pawprints.

Cheerios and apathy

A couple of days ago, still recovering from that gross cold, I got up and went to the kitchen for my morning Chemical Swig (two big purple pills, a yellow one, a tiny white pill and a medium-sized white one). I thought it was a good idea to keep the Advair in my system too, so I took a hit from the purple disc (it's an inhaled powder) because it helps to clear out all the congestion I feel in my lungs... for the next five or six or ten minutes straight, I was doubled over, coughing, wheezing, and basically having a panic attack in the kitchen. It's amazing, the body's very primal response to lack of oxygen... I don't usually have a problem inhaling Advair.
So what's a person to do when their loved one is having some freakish breathing crisis? I guess my family is so used to me hacking and pounding my chest that they sat at the table, enjoying their conversation over bowls of Cheerios and Cinnamon Toast Crunch. I felt like the Sideshow Breakfast Freak, yeah nevermind her, she coughs sometimes, pass the milk please.

When I was finally able to stand upright and walk towards a couch, my husband mustered up all the care and concern he could find within himself and asked, "Gonna live?".

Yes, I survived. If it happens again I'll fall down. It may warrant a look of concern and a little damp washcloth on my forehead if I'm lucky.

44K

One PH patient's stem cell experience (from a post at phcentral.org):
Hello every one my name is K__ and i am supposedly the first person in the world to be treated for PH by direct injection with adult stem cells. I just had my one month check up with Dr. ____ at Regenocyte in Naples, Florida. My echo showed about an 11 point drop in pressure. Big stuff for one month, max benefits are at three to six months for stem cells.Unfortunately, I have some COPD so my sats have not gotten any better yet. Also I was having some violent heart palpatations and they have completely disappeared. I will keep posting - I think it's the best thing going for PHers. I would encourage everyone to begin their research on stem cells, all the different kinds, and places to go, pros and cons etc etc.

There are several kinds of stem cells. Adult stem cells have been used for thirty years in the US for specific disease. Adult meaning from your own body - either bone marrow or blood draw. I had a blood draw. They take a pint of blood, send it to a lab in Israel; they find 4 or 5 stem cells and copy them 35 million times. This number varies, the average is 22 million. Then you fly to the Dominican Republic and meet the doctor at the nicest hospital I have ever been in. They receive the cells back in about 5 days. He catheterized me through the heart as far as you can to the veins in the lung, then balloon the catheter, inject the cells and some salt water to put pressure on, and cram the cells into the small veins where we are all having trouble. Hopefully most of them stick to the right places, then in about two weeks they start dividing into new tissue and building collateral veins. Sounds easy.
Back to what's available for us. There are several companies out there treating PH with stem cells. I went with Regenocyte.com. The doctor is super good and staff bends over backwards for you.I picked him because he specialized in the vascular field. They are one of the most expensive (44,000.00) but to get a practicing cardiologist to leave the country and do a procedure with you is going to cost money.The x-cellcenter.com is probably the cheapest(13,000.00). They do bone marrow adult cells and don't promise anything, but will treat you. I don't think they have treated anyone for PH yet.Also stemcellbiotherapy.com uses cord blood and will treat you. You have a small chance of host vs. graft problems but the adult cells won't work if your disease is hereditary. Canada is working on a FDA trial that is gene cell combo. They are in phase 2 and showing good results, but they are 7 to 10 years out for the public and will not take Americans for trial studies. Also go to stemcellpioneers.com - it's all people who have been treated with cells for all kinds of stuff. Very informative.

let it snow let it snow

I can function now, but all of us under-40s are still coughing and blowing noses. It's a sad reflection of my life to list "not wearing pajamas" as a highlight of my day.

K's flying today after several days off. It's got to feel good getting back into the cockpit after being stuck with three screechy kids and a miserable wife for five days straight.

In the coming days, LittleK will be singing in the kindergarten music program, and we'll have her Daisy troop meeting here at the house. I've got to send out warnings to the moms that our street has bad potholes and that our house has a giant elk mount that might give their kids nightmares.

Time to sit with R (who's zoning out on Caillou)... and watch the snow come down.

cough hack ptoo

Our two-year-old just woke up and came over to me and wiped his nose on my sleeve. Gross. Then he started pleading, "Uckger, UCKGERRR, UCKGERRRRR!" I couldn't decipher it, since he shook his head when I asked him "Soccer? Locker? Booger?" I know it could not possibly be the F-word. According to his dad and T, he's started calling his molars something like that uckger word so maybe they're the problem. Hmm.

He was miserable for two days last week. He's still coughing a little and his nose runs but it's my turn to be miserable. It's as if my body has cold layers, the worst and most sensitive layer being my skin. I'm spending most of my time in bed under a blanket and two comforters, coughing up disgusting remnants of my immune system's battle with this mini-flu. I can't smell or taste anything, I don't really want to eat anything. So far I haven't lost my voice and gone to the clinic, like I did in January. So far. If K weren't here to do everything I'd be much worse off.

Somehow, he and T don't get sick like the little ones and I do. He's got much healthier habits than I have... like not hanging out in 3rd grade stapling bookorder flyers together, or cutting out construction-paper space helmets for kindergartners.

I think LittleK's next on the miserable list, she's at the constant-cough stage but still has enough energy to get dressed and play outside.

By the way, our nephew Abe has gotten so much better this weekend, he's been able to go home and hang out with his brothers! Yay Abe!!!!