Archive for March 2016


Delicious Curry

March 22nd, 2016 — 9:07am

I’ve been making variations on this curry dish for years, changing this and that. Last night’s version was especially good so I thought I’d better write it down.

Half an onion
Four handfuls of baby carrots, cut into nice bites
A 10-oz sack of sliced mushrooms
One whole cauliflower, cut into nice bites
About half a sack of frozen peas
Optional: about two cups of cubed cooked chicken (I used leftovers, but you could cook some chicken or beef before you start the veggies)

Start the onion and carrot cooking in some oil before you add the other veggies. When the onion is soft and the carrots are partly cooked, add the cauliflower and mushrooms. Stir them around for a bit, then add a cup of water and cover the pot.

While they cook, whisk the sauce together:

Two cups of chicken or beef broth
One cup of sour cream
Two teaspoons of curry powder
Three tablespoons of cornstarch.
salt to taste

When the veggies are about half done (check the cauliflower), add the sauce, peas, and chicken to the pot. stir all around, cover, and cook on low, uncovered, until the sauce is thick and the veggies are done. Check the salt again. Serve over rice.

YUM.

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Uptravi update

March 20th, 2016 — 9:26am

My first week on Uptravi went well. Side effects were: nausea the first night, uncomfortable enough to keep me awake in the middle of the night for a couple hours. Slight nausea all the following day, but none after that. Diarrhea the next day. Then just general gastro-intestinal oddness for the rest of the week. Bloating, and just not-quite-rightness. Nothing terrible, nothing intolerable.

I felt more out-of-breath than usual all week, probably because I was allowed to stop breathing Tyvaso but the Uptravi hasn’t reached a therapeutic dose yet.

It was wonderful, wonderful, not to have to breathe Tyvaso anymore! I have this internal clock that goes off four times a day. “Time to breathe your horrible Tyvaso,” says my brain, but “Ha!” I say to my brain, “I don’t have to anymore!!” No more endless painful coughing, no more headaches, no more feeling ill and needing to lie down, not more turning red in the face.

On Friday the 18th a nurse came to check on me and gave me the OK to increase my Uptravi to 400mcg twice a day. The first night I had nausea again; today is the second day so we’ll see… I imagine that each step up to a higher dose will affect me in a similar way, and I doubt very much if I’ll get any of the other common side effects, such as jaw pain, limb pain, joint pain, headache, dizziness…

Because I don’t spend my whole morning coughing from my first dose of Tyvaso anymore, I’ve been able to get some recording done first thing before the house gets noisy. I recorded four chapters of Young Folks’ History of Germany, so that’s 12 of 50 finished, and just now I did two chapters of Betsy and Tacy Go Over the Big Hill.

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Uptravi

March 13th, 2016 — 9:51am

I’ve just started a brand-new Pulmonary Arterial Hypertension medication called Uptravi (selexipag). It’s replacing the horrible horrible Tyvaso that I’ve been on since 2011.

Tyvaso is inhaled through a nebulizer four times a day. My dose was 18 breaths (4 times a day) and it was awful awful awful. Every breath made me cough ferociously, and the whole process left me exhausted, drained, and headachy every time. Up till now it was better than the alternative, which would be an infused medication delivered via a permanent IV pump with all the associated risks — infection, blood clots, etc. I /really/ didn’t want to deal with that, so I stuck with the Tyvaso.

Uptravi, which is the same basic type of medication as Tyvaso but delivered via tablet, was just approved by the FDA in December of 2015 and went on the market in January 2016. It took a long time for my insurance company to approve it, and for everyone to give me permission to start it, but two days ago, Friday March 11, I finally took my last Tyvaso treatment and started my new Uptravi!

Uptravi has a lot of terrible side effects, naturally, and can be hard to tolerate, so there’s a very slow titration process. They sent a nurse to my house to walk me through it and give me all the warnings in person. I started at 200mcg morning and evening (12 hours apart). Then after a week they’ll send a nurse out to check on me. If everything is good, I’ll go up to 400mcg for a week. And so on, until I reach 1600mcg “or the highest tolerated dose”.

I had some bad nausea the first night but no side effects since then. It’s so amazing to finally get away from Tyvaso and I’m incredibly grateful to the scientists who keep inventing new treatments for my terrible debilitating rare incurable illness.

They’re not really sure if Uptravi will make me feel better (every PAH patient reacts differently to medication), but it should slow the worsening of my condition. And I won’t be coughing all day!

In other medication news, I’ve switched from Tracleer to the newer, less-potentially-deadly Opsumit and also started Digoxin to help my heart beat slower and stronger. Also I’ve gone up to 20mg of Lexapro and it’s amazing. I don’t feel anxious and depressed all the time anymore! If you have anxiety and/or depression, please don’t be afraid to try some meds in addition to talking with a really good therapist.

I recorded another chapter of “Young Folks’ History of Germany” this morning :)

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