Category: Blog

itchy again. GAHHHHHHH.

December 3rd, 2017 — 6:11am

On Friday, exactly two weeks after my final dose of Prednisone, and with the Prednisone side-effects nearly gone, the full-body itch returned. My entire skin hurts. I don’t know if you’ve ever noticed, but in large quantities the “itchy” sensation is actually a special kind of pain that makes you want to claw your skin off with your fingernails…

So I started back up on the hydroxyzine and have been so groggy for the last two days that I can scarcely move. Groggy and itchy and in terrible terrible pain from the Remodulin infusion site I started on Thursday.

Now it’s very early Sunday morning, still dark, and I woke up from the itchiness.

I have leftover Prednisone so just now I broke a tablet up and took about 5mg. Dr. Nguyen told me he thought the itch would return, and that I’d need to be on a steady low dose of Prednisone (10 mg) but oh how I was hoping that wouldn’t happen. But here we are.

Dreading the return of the Prednisone side effects. Dr. Nguyen said they wouldn’t be bad on a very low dose. We’ll see. I’ll try to get an appt with him Tuesday (he’s out of the office on Mondays) and get an official prescription for whatever dose of Prednisone he thinks might work. Until then I’ll take 5mg a day and hope it keeps the allergic reaction under control.

I had three good days between the diminution of the Prednisone side effects and the return of the itch. I made dinners for family, babysat children, and recorded an audiobook. (see below) Three good days at the top of the rollercoaster and now it looks like I’m heading downhill again.

I don’t know how much more of this I can take.

10 comments » | Blog

Walter the Lazy Mouse

December 1st, 2017 — 1:38pm

Here comes a non-medical post for you. Enjoy ;-)

Walter the Lazy Mouse, by Marjorie Flack, is an old family favorite. “Have you seen my father and mother and sisters and brothers go by?” I gave a hardback copy to Rosie for her fourth birthday, and she adores it. We’ve all read it aloud to her over and over again, so I decided I should record it for her, and for you, too!

I’ve just finished it up and put all ten chapters into my podcast feed. There’s a link in the right sidebar somewhere, or you can search the iTunes podcast app for “Kayray Reads to You”, or you can go directly to

Or click ‘em from here:

01 How Walter Mouse Lost his Home
02 How Walter Finds a New Home
03 How Walter Makes Furniture
04 How Walter Does Nothing
05 How Walter Learns to Swim
06 How Walter Teaches School
07 How Walter Needs His Coat
08 Danger in the Woods
09 How Walter Returns Home
10 Walter Goes Back to Mouse Island


1 comment » | Blog

lots better

November 16th, 2017 — 5:08pm

I’m still alive! Thanks for all the sweet comments and emails, everyone :)

I saw my pulmonologist up at UCSF on Monday the 6th. Usually I take myself up to SF on the BART and the Muni, but I was so exhausted and in so much pain that Henry offered to drive me, thank goodness. They did a chest echo but I was in too much pain to do the 6-minute walk test. Yay, sort of. I hate the 6-min walk. Doc prescribed a 12-day course of Prednisone for the crazy rash. Prednisone is horrible stuff, but within 3 days my rash had calmed down a lot and continues to be better (except that I can’t stop picking at all the scabs). Not gone, but better. Tomorrow is my last day of Prednisone, so then we’ll see if it all starts back up again. Cross your fingers.

Prednisone has bizarre side-effects. My face swells up every night and I wake up looking like a full moon. For the first few days I had to pee every 15 minutes. Also, the increased appetite is NO JOKE; I’ve been eating like eating is going out of style. My vision is kinda blurry and my eyes are gritty. I feel wired, and I don’t sleep well at all. One night I woke up absolutely drenched in sweat — my sheets were actually soaking wet. Gross. But luckily that only happened once.

I’m also still on a high-powered antihistimine (hydroxyzine) which makes me feel groggy and dried-out. Lovely Dr Nguyen, my PCP whom I saw on Tuesday, told me to take them every 4 hours now instead of 3x/day to try to keep everything calm when I go off the Prednisone. He says if the rash comes back, and he thinks it will, we can manage it with a low dose of Prednisone. UGH. We’ll see how things go over the weekend…

3 comments » | Blog

horrible allergic reaction

November 5th, 2017 — 7:54am

Guys, I’m having a really hard time.

This allergic reaction to adhesives has now spread over my entire body. I itch EVERYWHERE. My skin hurts and burns everywhere. It feels as if I’m wrapped in coarse sandpaper and have a terrible sunburn. I have scabs everywhere from scratching my skin raw. I look like I have the measles and have been attacked by raccoons.

On Friday it finally spread to my face and I woke up with my face and eyes so swollen I could hardly see. It seriously freaked me out and I got worried that it might be a bacterial infection or something. I called my lovely primary care doc, Dr. Nguyen, and thank goodness he had an opening at 9am so I raced over to his office.

I explained the whole story to him, while sobbing, and he said it’s definitely not an infection, it’s definitely an allergic reaction either to adhesives or the meds themselves. He gave me a cortisone shot for quick relief and a prescription for even stronger antihistamines (hydroxyzine) that I can take throughout the day. By the end of the day my face was much less swollen.

The hydroxyzine helps somewhat — I’m still itchy but the pain is less. I can sleep through the night without waking myself over and over, scratching, but it makes me so drowsy all I can do is lie in bed and do nothing. Thank goodness it’s the weekend and most of my family is out of town so I have quiet and no childcare to do. Henry, Jayla, and Tiny Babe are here and have been keeping me company and bringing me food and water.

I just woke up (Sunday morning) and my face and eyes are swollen again. I guess the cortisone wore off.

Tomorrow I have the big trek up to UCSF to see my pulmonologist. Usually I’d take the BART and the Muni, but I’m such a wreck that Henry offered to drive me.

I’m barely even using any adhesives anymore — just a tiny bit where the catheter sticks to my skin, and I’ve even trimmed that back to the bare minimum. I don’t understand why the allergic reaction isn’t getting any better.

AND I need to keep switching infusion sites every few days; the allergic reaction is so extreme around the little bit of adhesive right there that my skin erupts in oozing sores and I need to switch to a new site, which means I have the new-site-pain to a greater or lesser degree at ALL TIMES and it never has a chance to settle down.

This has been going on since August. It’s November now and there’s no end in sight.

I am intensely miserable. This is really difficult.

5 comments » | Blog

Allergic Contact Dermatitis

October 7th, 2017 — 9:18pm

Guess what, I have a difficult new condition.

After the Urgent Care doc diagnosed me with Post-Injection Inflammatory Reaction at the infusion site on my left thigh, I figured I could start a new infusion site on my right thigh and be fine for another few months. NOPE. The itchy bumpy rash showed up in less than a week.

It was bad enough, oozy and itchy and gross, that I called Accredo, the specialty pharmacy that supplies my Remodulin, last Saturday. They have nurses on call 24 hours a day to help with medication and infusion pump issues. I described my rash to a nurse and she said it sounded like Allergic Contact Dermatitis — a reaction to all the adhesive tapes and dressing that I use to secure my infusion site and tubing and stuff. She described exactly what I’m experiencing and said she’s seen it often. She said to use the bare minimum of adhesives and to take antihistamines and wait for my body to chill out (I’m paraphrasing).

Welp, today is one week later and I’ve had to start yet another infusion site on my LEFT thigh because the one I started last week on my RIGHT thigh is too broken-out and oozy to tolerate. GAHHHHHHHH. This is quite awful because the pain of a new infusion site is most severe for the first week or two, and the goal is always to keep a site going for as long as possible. I managed 6 weeks once.

I’m sorry that all I seem to talk about here is my awful health conditions. Sometimes I feel like I am just barely making it from day to day what with all the crazy side effects and pain and all. Remodulin is still better than Uptravi or Tyvaso. Once in a while I feel good all day. I’ve been chronically exhausted lately but I’ll bet it’s partly down to the strain of this constant allergic reaction.

2 comments » | Blog


September 17th, 2017 — 10:00am

That itchy bumpy rash around the Remodulin infusion site on my left thigh wasn’t getting better, so on Friday morning I started a new infusion site on my other leg. The rash still wasn’t better on Saturday and I was worried that it might be an infection so I went to Urgent Care where a nice doctor set my mind at ease. He said it’s “Post-Injection inflammatory Reaction” [EDIT: this turned out to be an incorrect diagnosis. See following post.] and prescribed an antibiotic ointment to soothe the itching. He took a swab just to be sure it’s not an infection, but he didn’t seem concerned at all. So that’s good.

I expect it started up because I’ve been using the same 4″ area on my left thigh for Remodulin infusions since May. I discovered that the pain of a new infusion site is MUCH less when you start the new site about an inch away from the old site… which is why I kept to that same area all this time.

The new infusion site on my right thigh hurts like HELL. All swollen and hot and red and extremely painful. I can hardly walk. It’s awful. But I know from experience that it won’t last more than a couple weeks and will become more tolerable within a few days.

So — I’m just icing it and trying not to move more than I have to. Ouch ouch ouch ouch ouch.

1 comment » | Blog

checking in

September 15th, 2017 — 9:59am

Just checking in to say I’m still here :)

I’m still getting over the tail end of the Bakersfield Bacteria Cough. Jeeze. Also I’ve developed an itchy bumpy rash around my Remodulin infusion site. Other than that, though, I’m feeling pretty good!

I baked apple turnovers yesterday with apples from the tree in the front yard and they were delicious. I even felt well enough to do a little recording the other day. My elderly Zoom H2 Handy Recorder doesn’t play nicely with OS X Sierra when used as a USB mic, but I figured out that I can record onto the SD card and that still works fine, so I am continuing “Betsy and Tacy Go Downtown”. I’m so phlegmy that I need to stop and clear my throat every few minutes and even then I still sound funny, so I’m not doing anything for Librivox yet. But someday I’ll pick a new solo.

In other news: Henry and his lovely girlfriend Jayla are expecting a baby girl in a few weeks, so I’ll be a grandma soon! It’s very exciting, and I’ve been knitting and sewing lots of things for Tiny Babe, as 4-year-old Rosie has nicknamed her. They’ll be some sort of cousins but it will really be as if Rosie has a (part-time) little sister, which she has been wishing for, so she is thrilled :)

1 comment » | Blog

Bakersfield Bacteria

August 13th, 2017 — 8:44am

All is well with me and SB :) :) :)

Bakersfield is halfway between us, so a couple weeks ago we met there to spend the weekend together and it was lovely. Bakersfield, for those who don’t know, is a desert hellhole in the California Central Valley, but the La Quinta motel is very very nice and if all you want to do is stay in bed with your sweetheart all weekend, Bakersfield is just fine.

However. A couple days after I got home, I noticed a lot of post-nasal drip, and then I developed a truly horrible debilitating cough. SB had some symptoms, too, but he’s very sturdy and they went away quickly. I am extremely fragile and the cough got really bad, keeping me up for hours every night.

A couple days ago I had an appt with my wonderful primary care doctor, Dr. Nguyen, for other reasons – I’ve had a ton of strange symptoms lately — extreme fatigue, loss of appetite, gritty eyes, hands that fall asleep all the time… I suspected that I was hypothyroid, but my endocrinologist ran labs and said that I should cut back my Synthroid dose a little bit. This recommendation didn’t make sense to me (the test results indicated that I was a little bit hypo) so I asked him again to be sure, and then shrugged and followed directions.

My lovely lovely Dr. Nguyen ran a TON of labs to try to figure out what’s going on with me (I had eight vials of blood drawn on Monday) and SURE ENOUGH I’m even more hypothyroid than before! ARGH, so frustrating. I knew I was hypo, and my endocrinologist didn’t LISTEN to me. But Dr. Nguyen listens. He said I can go back to my old, higher dose of Synthroid and that he is happy to manage my thyroid so I don’t need to go back to the doc who doesn’t listen.

Also, I’m low on B12 and D. So the combination of B12 and D deficiency and hypothyroidism explains all of my recent strange symptoms, and it’s all easy to fix.

I asked him about this strange and horrible cough. I’d told him it started right after I want to Bakersfield and it all added up — he says there is bacteria hanging around Bakersfield (and the Central Valley) that causes just such a cough, especially in people with weak or compromised respiratory systems. (that’s me) So he prescribed an antibiotic. Unfortunately, the really good antibiotics clash with all my other meds, so he had to prescribe one that isn’t super effective but might work. I’m being very careful to follow the dosing directions to the letter, in hopes that it will increase the effectiveness. Exactly 12 hours apart, empty stomach, and no foods with a lot of calcium or iron within 3 hours of either side of Pill Time.

After two days of getting enough B12, D, and thyroid hormone, my appetite is already returning. Two days of antibiotics is probably not enough time for them to work, but my cough seems a little less drastic already.

Thank goodness for doctors who listen.

1 comment » | Blog


July 20th, 2017 — 2:35pm

Good news, everyone! He still loves me. And I love him. And we live 500 miles apart but Southwest flights are cheap and we’ll work it out somehow.

I am so lucky that he’s willing to give me another chance. So incredibly lucky. Many times in my life I’ve felt like I was living in a nightmare that I couldn’t wake up from, and now I feel like I’m in a good dream and I don’t /want/ to wake up.

I love you, SB.

8 comments » | Blog

All is not lost!

June 30th, 2017 — 10:08pm

All is not lost! I may have another chance to show this wonderful man that I love him. I may have a chance to win his trust and his love back.

Comment » | Blog


June 29th, 2017 — 7:58am

He says he’s not sure how he feels. I said I will wait till he figures it out. He waited for me for three years before he gave up. I’ll wait.

All is not lost, yet.

1 comment » | Blog

broken heart

June 27th, 2017 — 8:28pm

I fell hard for a man in 2014 but I freaked out and dumped him (twice) but we stayed friends and he has been my best friend for the last three years while he told me that he still loved me but he finally gave up on me and has met someone else and I realize now that I’ve loved him all along (somehow everyone knew this but me) and it’s too late and I wasted three years not being with him, THREE YEARS, and I am dying of a broken heart.

I kept trying to date other guys but no one ever came close to touching my heart like he does and every time my phone dinged, EVERY TIME, I hoped it was a text from him. Why didn’t I figure it out? Why was I so stupid? Why didn’t I listen to my heart and my feelings instead of my stupid brain that kept telling me that we were too different and that he’d be better off with someone else??

1 comment » | Blog


June 21st, 2017 — 8:20am


Me, June 2017, looking hot hot hot.

2 comments » | Blog

hello world

June 12th, 2017 — 11:03am

I’ve been sick with a cold for the last week (my typical sore throat -> stuffy head -> cough) but it’s not terrible and I’m on the mend.

The Remodulin SQ is going well. I’m up to 0.012 mL/hour (goal is 0.03mL/hour). I’m still not sure I notice much difference in my shortness of breath (SOB) but my mental stamina is much greater than even a month ago. I did a few small sewing projects, and I’ve been reading again! (This might be because I’m not on Uptravi anymore, but either way it’s good.)

I feel like I haven’t talked about anything but Remodulin here for a long time. Sorry about that. It’s just a HUGE thing for me. I’m pleased that I got accustomed to the pump very quickly. It doesn’t bother me at all. I sewed a few different carrying systems for it and finally made one that works well — a purple flannel pocket on a not-too-tight elastic band that I can wear slung kinda low around my hips.

I’ve been reading Agatha Christie on my kindle every night for bedtime, plus I went to the library last week and got three great books which I read in quick succession:

My Not So Perfect Life by Sophie Kinsella (it’s always so much fun to read a new one of her novels!)
Edgar and Lucy by Victor Lodato (amazing)
Between Them by Richard Ford (a lovely memoir)

Then I returned them on Saturday (even though I was sick) and got a new stack! Right now I’m reading American Eclipse by David Baron, which is about the solar eclipse of 1878.

4 comments » | Blog

Remodulin update

May 23rd, 2017 — 5:41pm

I’m doing fine on Remodulin! The site pain was very bad for about a week, and after that it only hurt in the afternoon and evening, and by the 11th day it stopped hurting, mostly. (I can still feel it — but I wouldn’t say it hurts.)

Ice was the only thing that really helped, so I spent a lot of time in bed with ice on my leg.

I’m up to 0.006mL/hour now, and down to 200mcg of Uptravi. On Thursday I’ll go up to 0.008mL/hour and stop taking horrible Uptravi altogether! Hooray, hooray, hooray.

Every three days I put about 1mL of meds into a little vial in my pump, a chore that only takes ten minutes or so, counting washing hands and cleaning all the equipment with alcohol wipes, etc. They supplied me with two pumps, which I need to switch every three days to make sure I always have at least one that’s working.

Showering is a bit of a chore. I unclip my pump, since it’s fine to stop my meds for a few minutes; the delivery is so slow that it doesn’t even build up to a drop on the end of the needle while I shower. Then I cover the site with a bit of plastic with sticky edges, and then cover THAT with a sheet of this special cling-film called Glad Press ‘n’ Seal. I tuck a little bit of tissue under the first plastic barrier to absorb any stray drops of water that might get through. Then while I shower I keep the shower handle low, to minimize spray on the site. Not too hard, just a little bit annoying.

Being off the Uptravi is such a relief. I had forgotten what it was like to not be in pain all the time. No more full-body aches. No more knee pain. No more foot pain. No more random muscle pain. Fewer headaches, less nausea. My brain feels clearer.

My Remodulin dose is still very tiny, but I think it might be helping already. Maybe. I think my oxygen saturation is a little better, on average. I need a nap every afternoon, though.

2 comments » | Blog

Fargo Bridge Tournament Scene

May 15th, 2017 — 2:02pm

Couldn’t get it out of my head so I googled. Presented here for your enjoyment. Because WOW.

Comment » | Blog

Remodulin SQ: the first few days

May 9th, 2017 — 8:47pm

I need to take my mind off the evil, treasonous, poisonous Tr*mp administration (I wonder how long until I might be arrested for saying that?), so here’s another post about Remodulin SQ. My first infusion site is on my upper left flank, a spot I chose to be not in the way while I’m sleeping. Infusion sites last 4-6 weeks, with luck.

Day 1 (Friday): Started Remodulin SQ around 1pm. By evening, the infusion site was burning and itching a bit.

Day 2: Infusion site had swollen somewhat, and was quite painful. It was painful to put any weight on that leg, so I had to hobble around on a cane. I mostly stayed in bed and napped. I tried ice, Aspercreme, and CBD oil, and they all helped. The CBD oil in particular seemed to give a lot of relief, though that might have been a coincidence because it never helped again.

Day 3: The pain was somewhat better. Used lots of ice all day. Sat in bed and sewed a thigh-holster out of purple flannel and elastic for my pump.

Day 4: Purple bruising around infusion site (normal). Terrible terrible pain all afternoon and evening. The only thing that helped was ice, and the pain was only relieved while the ice was actually pressed against the site. So, I napped and iced my leg most of the day.

Day 5 (today, Tuesday): woke up with much less pain! Could walk without a cane for the first time since Friday! Cooked dinner! Sat outside with Rosie! By evening I was very tired and the pain was returning so I called it a day and went to bed at 6pm with a book and an ice pack. The ice kills most of the pain but only while I’m applying it.

So it’s difficult but tolerable. I’ll be increasing the dose on Thursday. I don’t know if the pain will increase as the dose does — apparently, for some people it does and for some it doesn’t. And then on top of site pain there are all the other side effects, which, on this tiny starter-dose, are nonexistent as of yet. Fingers crossed.

Comment » | Blog

Starting Remodulin SQ

May 7th, 2017 — 8:36am

Starting Subcutaneous Remodulin:

(Again, I’m posting so that my friends know what’s going on, and also so that other patients might find useful information.)

On Friday, Henry and I travelled up to the UCSF medical center (Uber, BART, Muni). I always allow a good time buffer when taking public transportation, so we left at 9:30 and arrived at 11 for my 11:30 appointment. Hung out in the waiting room for a while and then the nice Accredo nurse, Soyoung, who trained me at home, showed up! I wasn’t expecting that, and it was nice to see her again. Eventually we went back into an exam room and a nurse tested my vital signs as usual, and took a quick EKG. All normal (for me).

Then Nurse Jill came in. She’s one of the team of three nurses who help Dr. Janmohamed’s Pulmonary Hypertension patients — Jill, Nimi, and Amanda. I’d never met Jill before but we had spoken on the phone many times, so it was nice to finally meet her! She’s absolutely lovely. We had a long talk about how I’m feeling — PH symptoms, Uptravi side effects, etc., and she listened to my heart and lungs. And then finally, finally, finally, I was allowed to start my meds. Soyoung asked if I needed another demo, but I said nah, I’m ready to just do it myself.

So, as Jill, Soyoung, and Henry watched, I started a new infusion site, filled a vial with meds, put the vial into my pump, and programmed my pump. It’s a complex multi-step process which I’ll get Henry to video one of these days so you can see exactly how it’s done.

And then, once the meds were actually infusing into my body, Henry, Soyoung, and I waited. And waited. And waited. A nurse showed up now and then to check my vitals, which were fine. After three hours of being observed they let us leave. At that point there was very slight pain at the infusion site but not much.

By the time I got home, it was hurting a bit more, and by bedtime it was hurting even more. Ice helped quite a bit, though I need to be careful not to let my infusion site get damp from condensation.

I didn’t sleep well, but not because of the pain, which was moderate. The problem was that one of my oxygen connectors worked itself loose in the night, so I kept dreaming that I couldn’t breathe, and waking up over and over gasping and with a ferocious headache. I finally thought to check my connectors around 5:30am but never went back to sleep, gah! So yesterday was pretty rough, between site pain and no sleep. I kept icing the site, which helped, and I tried rubbing a little Aspercreme around the area, which also helped.

Jill and Amanda both told me that one of their Remodulin SQ patients says that marijuana oil rubbed around the infusion site is the best pain relief, so M got one of his SF friends to go to the medical marijuana dispensary and get me a bottle of Absorb CBD oil (CBD gives pain relief but doesn’t get you high). I rubbed a bit on last night, and within 20 minutes the pain was much much better!

Last night I slept well, and this morning the pain is still quite tolerable. I don’t know if the CBD oil is still effective, or whether enough time has passed that my body isn’t freaking out anymore. Whatever.

I am starting at the lowest possible dose, which is (get this) 0.002mL/hour. My little pump holds enough meds for three days, so on Monday Soyoung will show up at my house again and make sure I do a good job changing the vial. Every week we’ll raise the dose by 0.002mL until I can’t tolerate the side effects, just like we did last year with Uptravi. And maybe someday I’ll actually be able to breathe better. Maybe.

2 comments » | Blog

remodulin starter kit

May 4th, 2017 — 9:53am

A couple of days ago I got my Remodulin starter kit so I can start my meds tomorrow at my doctor’s office. I have searched all over the internet for information about Remodulin SQ (sub-Q, subcutaneous) so I know there’s no one else who has ever posted information about exactly what kind of supplies your specialty pharmacy will send you. This post will be photo-heavy!

Remodulin SQ is pumped through a tiny catheter under your skin, 24-7. It has all the usual treprostinil side effects: nausea, vomiting, diarrhea, headache, dizziness, jaw pain, flushing, skin rash, or injection site reactions. The injection site reactions can be severe, but they say the worst pain only lasts about a week after changing infusion sites, which you do every 4-6 weeks.

First I opened up a small box that contains three syringes of PLO-gel, which is a topical pain relief compound containing all kinds of interesting things including ketamine:

Remodulin SQ starter kit Remodulin SQ starter kit

Then I opened the Big Box:

Remodulin SQ starter kit Remodulin SQ starter kit

Here’s the packing list:

Remodulin SQ starter kit Remodulin SQ starter kit Remodulin SQ starter kit
Remodulin SQ starter kit

Here’s what I got:
Paperwork to sign and send back
Drug info sheets
Two CADD-MS3 pumps plus clip-cases, batteries, and manual
A binder to keep records in
Shower supplies, to keep everything dry
alcohol wipes
skin prep wipes (to make skin a little bit sticky to that the infusion set will stay in place)
Cleo infusion sets (a purple plastic gadget that shoots a little needle into your skin and leaves behind a tiny 9mm-long catheter)
Tubing to connect medication pump to infusion site
IV3000 sheets (stick-on dressing to protect keep the infusion set in place)
Durapore tape to tape down the tubing to my body so it doesn’t snag. Excellent tape.
Stuff to get the medication out of the bottle and into the pump (syringes, vial adapters, etc)
Sharps container
Rubber gloves (I guess in case there’s a situation where I can’t wash my hands before doing medication stuff. Also in case someone needs to help with my meds — it’s dangerous for others to get it on their skin.)
A travel bag (insulated, for temperature control)
A plastic tray, for a nice clean work surface
And of course a 20ml bottle of Remodulin, which was packed in silver bubble wrap with a cold-pack.

Here are a few more pics:

Remodulin SQ starter kit Remodulin SQ starter kit Remodulin SQ starter kit

And here’s an album of all the photos I took:
Remodulin Starter Kit

If you have any questions at all, I’ll be glad to try to answer. I hope someone else who’s considering Subcutaneous Remodulin finds this post. This kind of specific information would have helped me a lot while weighing my options.

Wish me luck tomorrow!

3 comments » | Blog

hospital stay

April 14th, 2017 — 8:59am

Last week I had a couple of episodes of seriously racing heart (145-ish) with very low o2 (80%-ish). My pulmonologist wanted me to go to the ER, so when it happened a third time, I did. That was the afternoon of Thursday the 6th. Henry drove me to Washington Hospital in Fremont, and they admitted me right away, as they always do when you show up with heart problems!

They diagnosed me with atrial fibrillation. Yay, a brand-new condition! They got my heart stabilized fairly quickly with IV amiodarone, and took chest x-rays and an echo. I had fluid built up around my lungs because my heart was inefficient, so they put gave me a diuretic, which is NOT FUN when you’re hooked up to a bunch of machines! I started out in the ICU ward, but because I was a “walky-talky” patient (mobile and alert) they moved me to a private ICU room with a bathroom, thank goodness. They kept me in the ICU because of all my other underlying conditions. For example, I needed to stay on 6 liters of oxygen even after my heart had calmed down, because of my PAH, and my BP is permanently low. The ICU nurses were great! Najib, Shaina, Karla, Joseph, and Heather. They trusted me to detach from and reattach to the monitors and machines when I needed the bathroom.

After a day on IV amiodarone, they put me on tablets and observed me for another day. At this point (Saturday) they were ready to move me to a regular room, when suddenly I had another bout of AFib. Horrible, horrible. So, back on the IV drugs (they work faster) for 24 hours, then stronger tablets for 24 hours, then observation in a regular “telemetry” room for 24 hours, with orders to walk around and see if that would trigger more AFib. In a telemetry room, you are hooked up to a small portable monitor, which beams your stats to the nurses’ station. Nice! My telemetry room nurses were Trang, Kim, and Priscilla.

They sent me home on Tuesday night. *whew*

All the doctors were great, but especially Dr. Ahmad, the intensivist. He was kind and soft-spoken and he REALLY listened to me. He kept in touch with my pulmonogist at UCSF to make sure I was getting the right care, AND he already had some experience with PAH so my meds and symptoms weren’t a mystery to him.

The worst part of the whole thing, besides the usual hospital sleep-deprivation, was that my Uptravi reactions were so terrible while I was there. Hours and hours of painful hot-face and full-body aches and crushing fatigue almost every day. I don’t know if it was worse because of the stress of being in the hospital, an interaction with one of the other meds they gave me, or if they accidentally missed giving me one dose of Uptravi (I suspect this is the case, since the reactions continue to be terrible even though I’m at home). Awful, awful, awful.

The food was pretty great. Most days I had three quite edible meals, and along with most lunches and dinners they gave me two salads and fresh pineapple at my request! I gained 8-10 pounds while I was there so I’m up to 129 and no longer severely underweight, just a little underweight.

Now I have followups with my pulmonologist, a cardiologist, and endocinologist (my thyroid levels were a bit high, which could have contributed to the whole thing). Eventually, when I’m stable, we can go back to the Remodulin plan, which has of course been postponed. Grr. But at least the nurse came and trained me and Henry on how to start an infusion site, and how to fill, attach, and program the medication pump.

Thanks, Washington Hospital in Fremont, and thanks to your great staff! Also thanks to the ACA which allowed me to buy an insurance plan which will cover all but about $500 of this whole adventure (when I went in, I was already at $3500 of my $4000 out-of-pocket max for the year, and I have no deductible.)

8 comments » | Blog

Back to top