10 months and counting!

I've certainly had an interesting first 10 months post transplant!  People say the first year is the most challenging.  I can certainly understand why.  It has been harder than I ever could have imagined and yet more rewarding than I ever thought possible.  My emotions make me feel like a crazy person some days (yes... crazier than normal!).  The drugs have interesting side effects, that's for sure.

I'm now running 1.6 miles.  I've hit another wall, however.  I was running at a 4.0 pace and feeling like a speed demon.  But now that feels like a snail, but I can't run as far at a 4.3 pace (10 minutes).  I can only run 2-3 minutes at a 5.0 pace (which I do for interval training).  It's frustrating, exhilarating, and exhausting.  I forgot how much I sweat and how disgusting I look when I work out.  I get super red and am not very pretty.  Thank you, tons of mirrors all over the YMCA, you're really helping me out here :-/  But I can BREATHE.  However, I now always conduct a face check before I go anywhere in public after working out.  I went to the grocery store one day, asked someone for help, got some weird looks, and ended up in the frozen food section looking for eggroll wrappers (they're by the pre-packaged salads, in case you're wondering) and saw in the glass reflection that I had mascara ALL OVER my face.  Yup.  I almost couldn't stop laughing.  Almost.

So here's a short update on what's been happening!


I still don't have much feeling in the top of my thigh from having the ECMO.  Of course, I still don't have much feeling along my chest incision, either.  I notice it but don't really care about it.  It is what it is.

My Remodulin rash has completely gone away on my legs.  I use self tanner with an SPF (thank you Jergens!) and that seems to help with my pasty white bod.  I'm still very concerned about skin cancer but when I have my sunscreen on it feels fantastic to be in the sun for short periods of time.

It took about 9 months for me to fully realize that I won't run out of spoons.  I have a seemingly endless supply and it's exhilarating.  I have to remind myself that I don't have to adapt where I park and what I do because I simply don't get tired anymore.  Okay, I still get tired after punishing myself at the gym but it's the good kind of tired.  I don't need a day to recover from doing things.


We went hiking in Palm Springs.  It was awesome.  I do have more pics but Jeff has the camera and he's in Alaska.

Jeff in Palm Springs.  We really had a great time.

Michelada in Palm Springs.  Beer, Bloody Mary mix and a salted rim. HEAVEN.

I have developed some seriously painful joint pain.  Mostly in my hands and wrists.  It's so bad sometimes I can barely hold a toothbrush or get undressed.  Washing my hands is agony.  My tendons are on fire and my joints feel like they are full of glass shards.  It has slowly been getting better as the months have gone by.  We think it's some form of gout, but I'm not currently on any anti-gout meds.  Changing my diet seems to be helping.  Gout is no joke.  And I'm on almost every med to help with the pain that docs normally prescribe (immunosuppressants and steroids).  It seems to be some kind of reaction/ adaptation to the meds.  Arthritis sucks.  Tylenol takes the edge off, so that's been helpful (I can't take NSAIDS b/c they damage the kidneys and those are my weakest link).

I'm discovering that eating mostly vegetarian (not vegan... good grief people I gots to have my eggs and cheese!) is much better for my joints.  I did have a burger from Burger Lounge the other day and it was awesome, but I'm trying very hard to cut back.  Good news!  Wine doesn't make the gout worse!  Bad news.  Beer does.

My hair is growing back!  I have little spiky hairs all over the place.  I'm a frizzball.  :-)

I wrote my donor letter but haven't turned it in yet.  This has been very hard for me.  I overanalyze everything and overanalyzing this particular aspect of transplant is very hard to deal with at times.  Of course I want to thank them for my lungs!  But I'm not so sure I want to know more details.  For very few things, ignorance is bliss.  This is one of them.  I also don't know how much info to give them about me.  I just need to send it off.  I'm getting more at peace with the prospect of knowing or not knowing.

Being transplanted is a burden and a blessing.  I have a lot of guilt about not having figured out what I'm going to do with my "healthy" self.  What should I be doing to give back to society?  Isn't just being appreciative of living enough?  I feel like I should be helping other pre- and post-tx people but all I really want to do is forget that I even had a transplant and be as normal as possible.  I have always done things my own way, even with PH.  I feel like a wild child now!  There are basically two ways most people view post-tx:  This is my second chance at life so I'm going to be as careful as possible or This is my second chance at life and I'm going to live it up as much as possible!  Obviously I'm in the latter group.  I take loads of precautions and trust my instinct about germy places, but I don't take it to the extreme.  Of course, I could die before the 3 or 5 yr mark so everyone else could get the last laugh, but I'd rather have a few years of living the way I want than a decade of denying myself the fun stuff.  I think you have to know your own body and know what you're comfortable with... and then stretch the limits just a bit.  I eat blue cheese.  And brie.  And feta.  And drink alcohol.  I have avoided sushi... but I probably won't avoid it forever.  I've eaten runny yolks at restaurants (I try to avoid them but sometimes you need the egg on your bibimbap).  Sometimes I don't wash my triple washed pre-packaged spinach when it's going to get cooked.  I do avoid bar condiments (lemons, limes, olives, etc) unless they are in a covered container.  Lemons in my water creep me out.  I doubt they get washed.

A lot of post-tx people suffer from depression.  You're supposed to be so happy to be alive but this is not an easy process.  Complaining about the recovery makes you feel ungrateful.  But some parts of the recovery really suck.  The side effects suck.  Worrying about graft failure, infections, rejection, and dying all suck.  Not worrying makes you feel like you don't care enough about the threat.  But I wouldn't trade it for PH.  Not ever.  This is a million bajillion quadrillion times better.  I tell myself every day that even if I only make it a few years I will have "lived" more than I ever could have with PH.  But I really have a feeling that Jeff and the cats are doomed to suffer with me for a VERY long time.

I have to try very hard not to become the whirling dervish I was before I got sick.  I only go to the gym 3 days a week.  It would be very easy for me to get addicted to running, working out and burning calories.  I have to continually tell myself that getting back in shape will take time and I won't ever look like I did when I was 25.  My atrophied muscles are coming back but it's gonna be a long journey.  The fronts of my thighs are quite bumpy and weird looking.  I have to fight my impatience and remember that there was a time when I was never in a hurry simply because I couldn't hurry.

I feel so much stronger now... at almost a year out... that I'm almost ready to go to a gym class (like Zumba or Dance or something aerobic like that).  I'm still scared that I'll be panting in the background after just a few minutes but as I get stronger I feel more and more capable.  My heart was in bad shape, my friends.  Very bad shape.  It's coming around!



I have become a super domestic diva.  I'm sewing.  I'm thrifting.  I'm spray painting treasures.  I sew and paint with a mask, which surprisingly isn't as annoying as I expected it to be.  I've discovered that pretty much everything I attempt to cook or bake turns out well.  Bad for my daily caloric intake.  Good for forcing me to go to the gym.

Blanket from felted Merino sweaters

Blanket from felted Cashmere sweaters

Blanket from felted Cashmere sweaters

Blanket from felted Merino sweaters

Brass lamps before.

After!

The buffet we have outside. Don't have a before. It was brown. This is after!

Another lamp. It's in my craft room. It was brass. I love my cactus pincushion.

A mug tree painted and repurposed into a scissor stand.

Greek yogurt souffles. 

greek yogurt souffle recipe

Flew to DC (I'm so sorry if I didn't catch up with some of you while I was there! I was there a very short time).  Traveling is now SO much easier.  Wow.  I was almost crying with joy the whole time.  No getting swabbed and wanded at security b/c of my pump.  I wasn't exhausted.  No leg cramps from lack of oxygen.  It was amazing.  Stacey and I walked all over and I didn't get tired at all.

Me and the cherry blossoms in DC! 

I wake up every day so grateful to be able to breathe.  I'm not afraid to breathe, either.  For several months after transplant I was afraid to breathe.  Was the moist air in the shower going to give me an infection?  Was I going to inhale some small spore of something and get a fungus?  Is dust going to kill me?  I do most things without any fear at all anymore.  I am continually stretching my chest scar with the running and my lung capacity has continued to improve.  I'm not where a "normal" person is, but I'm able to function very well.

I am fast approaching my one year round of testing.  I'm not really anxious.  Whatever they find should be fixable at this point, so better to find it now!

I'll update again after my testing and let you all know how it goes.