US HealthCare Issues Notes

  1.  Low-Value Care: as opposed to more effective or less expensive alternatives, “overtreatment”
  2.  Lack of Price Transparency – seems arbitrary; most insurances apparently base prices on a “cabal”, or private small group which determines price values of medical procedures and care
  3.  Administrative Complexity =overspending on administrative costs 
  4.  Mandatory Budget includes Social Security and Medicare, which is increasing deficit; however, it is political suicide to suggest cutting spending for the disabled (grandma, Veteran, etc).  One solution is to lower overall healthcare costs, which Obamacare (ACA) addressed by including coverage for preventive costs, catching illnesses and diseases before they become ER visits or cancer treatments, aka more expensive costs.

Feb. 8, 2020 What’s New?

Sometimes people ask me what I’ve been up to and how I’ve been, which is a pretty normal question.  What I’ve been up to I feel can’t be easily summarized in a sentence.  It’s part of juggling “everyday” normal life with chronic illness, even if I’m technically no longer a strictly COPD patient.  Not that I spend every waking second worrying about insurance, but I’m my own secretary essentially.  I often have things scheduled on my calendar like “call back Christine from Horizon” about some question, or figure out why my claim got rejected, which can alone take up to 2 hours on the phone because insurance is often disorganized and non-transparent.  -_-  I have to figure out why this lab accepts this insurance but not this other one, and which one would save me more money.  I have to keep tabs on all my medications to make sure I don’t run out of refills, and I often message my transplant team for random test results and updates.

I also, still cook, clean, and bake a lot.  I’ve taken this habit of tidying up the house late at night after my workout, which is strangely calming.   I like to straighten the magazines, put things away in the sink, puff up the pillows and fold the blankets in the family room.  I also cleaned out the medicine cabinet with all the random expired meds, and re-arranged all the magnets and important pamphlets on our fridge.

I also enjoy browsing the internet to save future recipes, and this past week, I’ve spent a good amount of time reading up on health insurance policies and how they function, as well as architecture.  I also finally finished Andrew Yang’s first book from I believe 2006, “Smart People Should Do Things”.  Politics is not fun, but a necessary evil.  He’s growing on me, I have to say.  He has some interesting concepts and ideas, so I can say I have one foot hovering over the “Yang Gang” zone.

I also still keep up with my mukbang Youtube videos, and looking into online courses that could be helpful.  Also, drinking enough water, which is weirdly a huge task.  I noticed I am about 15-20 oz under my goal unless I am aggressively conscious about it.

I’ve been playing with my dog a lot more too, and making sure that I get out of the house every few days, whether to see a friend, or get an errand done.

So yep, that about sums up my February so far.

Chasing Inspiration

The word inspiration is so easily thrown out sometimes I feel like it can lose its meaning.  I think maybe these days I’ve in a rut or just stumped, and I wonder if I should take it more easy and not stress and overanalyze on things, or if I should push myself more to chase inspiration and find it.  It can often feel like most of the people around me have their life figured out, even though I know it may not be the case.

Things I’ve been doing to try to get inspired:

-Listening to music on Spotify A LOT and listening to modern classical pieces, as well as asking friends to send their favorite music to me

-Reading a bunch of books and working my way through this UN article on accessibility

-Worked out late last night with yoga, squats, and curls, and realized how quickly I became out of shape 😦 Felt rewarded though for setting aside 1.5 hours to focus solely on my body.

-Constantly tracking my diet and my liquid intake (HYDRATION!!!)  Reading up on nutrition and browsing tons of vegan and other recipes online (I bake a different recipe each night).

-Stalking musical and other types of people I admire on Twitter

Current book- “The 48 Laws of Power”: 

“Never waste valuable time, or mental peace of mind, on the affairs of others- that is too high a price to pay.”  

“People are of infinite complexity and you can spend a lifetime watching them without ever fully understanding them.” 

I’ve only read the preface so far, and I can see this will be a hefty book to get through, but I’m intrigued.

Conclusion after preface:  Power is always present and in effect whether or not you’re consciously participating in it.  Learning how it works and at least being aware of it is good, so that you’re not taken advantage of by other’s manipulation (whether they’re conscious of it or not)

Keeping my eyes on the prize:

My lung function had decreased by almost half, and it was pretty disheartening to see.  I felt a bit more hopeful since after exercise it went up by a few percentages.  What will get me through this winter is all mental.  You need mental to do the physical.  Mental is everything.  I need to keep trying my best so that I am ready for the day I am “free”.  I may have written my to-do list already, but these are some of them that I look forward to:

  1.  Traveling with a friend somewhere, and then all places on my immediate list (Vancouver, Yosemite Park, Portugal, Seville, New Zealand, South Korea, Singapore.)
  2.  Interning in a different city/country for 3 months
  3. Ziplining with a beautiful view
  4. Doing a 5k
  5. Wicked at Broadway, and walking all over NYC

Winter To-Do List:

-Coding bootcamp prep

-Lose 4 pounds and get fit

-Read up on accessibility

-Record some new compositions

-Korean 15 min a day

-Attempt networking

-Make a personal website (?)

-Stay alive

 

Productivity and Savoring

I’ve had a solid good week.  Been feeling pretty good lately.  It’s a combination of I’ve been making conscious choices to keep busy and stay productive, to make the most use of all the energy I have now, and my parents are also in a good mood.  The weather’s been pretty perfect lately, in that 70s range, so I get to go out on walks.  Last weekend, my brother came home and we went to a farm and also hiked.  The day before that, we walked at Duke Island Park, and both days averaged around 2.5 miles, so I felt pretty accomplished as I’d been trying to hit 2 miles for awhile.  The next goal is to stay at 2.5 miles more consistently, and to eventually hit 3 miles, then a 3k marathon.  I’ve been busy grocery shopping, cooking, hanging with friends, spending quality time with my parents and my dog, enjoying the weather, and today, I was pretty productive and proud of myself.

My parents finally went to Sojo Spa, which I was happy about since I was worried they would just never use the gift certificate I got my mom for her birthday last year, and that it would be too cold soon for them to go.  Thankfully, Sojo told me their certificates don’t expire.  What made me happier was that my parents thoroughly seemed to enjoy their time there relaxing in the saunas and spas, and also the beautiful view on the Hudson River.  They also enjoy the food I cook and the things I buy from the grocery stores, and that makes me feel happy to feel useful and to be able to contribute more now that I can afford to health-wise.

I have categories that I have to pay attention to, such as my nutrition and exercise, finances, social/fun activities, and goals towards my career.  I’ve been feeling pretty good in the nutrition and exercise category, although I could do better.  I seem to have hit 104.8 lb today, even though I mostly ate fruit and veggies and chicken noodle soup.  I’m trying to taper off all the sweets I splurged on since I could eat sugar again without being diabetic.  I would be happy at a 101-102 lb range, and also because the steroids I’m on have fluid retention in my cheeks, neck/jawline, back of neck and stomach.  I feel slightly unattractive, but I know there is potential to get stronger and change those things, so I feel hopeful and motivated to be more in control of my diet and exercise now.  The only thing I think I am suffering most in now is finances, but it’s not like I’m living in poverty.  I just need to stay on task for the skills I need to build up in order to eventually get a job next year.  There is a lot I can learn independently these days with the internet and all the free resources.  I can’t wait for the first trip I can take with a friend next year too!!  Been planning out a ton of itineraries lately and bucket list.  It’s so exciting.

I’ve been savoring many moments lately, appreciating every hot shower I take, appreciating that I can wash dishes even after I cook because I now have the energy to, and being grateful that my parents worked hard their whole lives to save up so we could live in a beautiful house with a nice deck, plants, and a big backyard.  It has become more and more apparent to me just how blessed I am, that every single thing I own and have is not anything I “naturally” have a right to.

I started watching the new season of Terrace House, and I really enjoy it so far.  There is something really zen and relaxing about this show.  I also have been making an effort to study and read up on some coding for at least an hour each day.  Today, I spent about 2 hours practicing Op. 10 by Chopin, a piece I’d always wanted to know how to play by heart, and also playing with Moonchi.  I also spent some time reading “The Chinese in America” by Iris Chang, a book I’d borrowed from the library for a few months now and never truly got around to.  It’s very interesting, although not necessarily a relaxing or fun read, it’s very informative.

Enjoying Life

It’s really easy to be stuck in a state of anxiety these days, and my sleep has been pretty inconsistent.  Whenever I have so much as a headache, my state of mind goes into panic, thinking it’s the first step towards rejection or infection, and the thought that I could easily land in the ER again tomorrow.  I’ve been trying to take it day by day and relax more, and the upside is that I enjoy every little good thing, and I am more willing to live in the moment and train myself to stay in the present.

It’s a bit hard to find that balance between staying cautious and careful especially in public (i.e. wearing a mask, staying away from crowded places), but also not to the point of being miserable and being fearful of enjoying life.  I’m happy to listen endlessly to Spotify because I can focus now, without nausea or feeling overwhelmed by the sounds while in pain.

I’ve had a constant headache these days, but noticed that it goes away when I go out, either for a daily walk or just to hang with a friend.  Every week, I look forward to little plans like catching up with someone, eating new foods, cooking different meals, writing and planning itineraries for future travel, and possibly grad school in a new environment, or studying towards a career goal so that I am more prepared when I can start actively going out in six months.  I am super excited to go grocery shopping by myself, buying bubble tea, eating mozzarella sticks and all the foods I couldn’t eat before.

Each day that I am not feeling ill is a blessing, and I am constantly reminding myself of this; it has been the upside thought when I am feeling anxious and stressed about the future.  Train your mind to focus on the positives.

Happy Fourth of July, 2019! *** (<- fireworks)

Today was a really good day, from beginning to end.  It’s been a pretty long time since I’ve had a solid good day where I wasn’t constantly sleep-deprived or worried or just somewhat restless and anticipating the next bad thing.  I just lived in the moment, and it was awesome to forget all the things I’d been thinking about nonstop. And it’s so nice to hang with somebody where it’s just effortless and fun, even when doing boring things.  Aka, my best friend.

First, we watched Avatar with our other friend online for about 1.5 hours, a solid few great episodes ending Season 1.  Then got ready to go out for a bubble tea and grocery shopping trip.  I’ve been trying to push myself more, and find active reasons to go out and move around more and exercise.  So I grabbed my portable oxygen, and we went to the new bubble tea place to try it out.  This was my second trip, and I wasn’t impressed with their salted cheese drink… it was just ok, just not something I’d crave in the future.  And also more expensive than I cared for.  Then we impulse-decided to go to Sunmerry and satisfy our craving for the best salted cheese green tea, only amplified by the mediocre salted cheese drink we just imbibed.  With that first sip, the world was right again.  Then we drove to Hmart to grab dinner, of which as we were standing there pondering, the sushi became 50% off, what a win.  Then we went hunting for her ingredients, and I also found an ube extract that I can use for future ice cream flavors and for cake!  So excited to try new things- I’ve got the Philadelphia Teaberry flavor extract “saved for later” list on my Amazon account- that’s next!  (I’ll also be receiving my cruelty-free bareminerals make up and metal cookie/ice cream scoopers soon!  That will make my life easier.)

Grocery shopping took a pretty long time, and I could feel my energy waning and burning up.  Finally, we sat down for a bit and then ran into a slight bit of traffic on the way home, due to all the pedestrians and police officers piling around the streets, hoping to catch some firework sights.  Then, after some rest, we set off fireworks on my driveway, which was a pleasant end to a pleasant day with good company ^_^

FOOOOD. May 4th, 2019: almost officially listed: Regularly updated

I’ve been trying my best to keep busy, with emphasis on activities that really require my focus and wholeheartedly occupy my time.  The main activities have been alternating between cooking, baking or making ice cream, and playing Mario Kart.  I’ve also been somewhat obsessed with tiny house videos on Youtube.   However, my parents are now marathoning Game of Thrones, partly due to peer pressure and curiosity from hearing about it, and partly because my brother managed to get my mom hooked last weekend when she visited him.  Even though she doesn’t approve of the gore and the nudity, the story is just too good to ignore.  So now we are binge-watching when we can, and it’s nice to be invested in something together.  My parents are also amping up on gardening, and full out mulching, buying plants, a gate for the deck, and decorating the backyard.  I guess it’s our way of dealing with all that’s happening and trying to continue living life as well as we can.  I’ve always had to see the doctor about once a week for vaccine updates (hepatitis b, ugh, 6 doses total), and for my weird hives allergy.

Otherwise, I’ve also been reading up on books I’ve saved on my list for awhile now, especially regarding Pulitzer Prize, or New York Times bestsellers.  I don’t know why, but my curiosity with learning more about the Holocaust has now expanded to other war-related topics, such as Iris Chang’s book regarding the Nanjing Massacre and Chinese history in America, and currently I’m reading “Gulag: A History“, which I had no idea was about Russian concentration camps, but it’s weirdly interesting, although appalling to realize this is real history that happened to people.  How can so much suffering exist?  It’s almost like what’s the point of living a life of constant starvation, imprisonment, and fear?

Back to baking and ice cream making, which are the newest and least experienced activity I’ve taken up.  On the plus side, we have fresh desserts all the time now since I make it a point to attempt one recipe per day, or every other day (cooking counts too though).

I’ve made korean cold somen noodles with the sauce and cucumber and eggs, SO GOOD, my fav new dish to eat for the summer.

Baking:

  1.  Matcha Mochiko Cake:  3.8/5, 3.2/5
  2. Matcha mochi with red bean:  3.5/5
  3. Pound cake muffins:  3/5
  4. Sugar cookies:  4.5/5
  5. Golden raisin oatmeal cookies:  4/5
    • criticism:  not bad, not particularly exciting either
  6. Carrot cake with cream cheese frosting:  4.5/5  (2x)  
  7. Japanese cheesecake:  3.7/5
  8. Dark chocolate brownies:  3.5/5
  9. Castella cake (Japanese honey cake):  4.3/5  (2x)
    • https://www.justonecookbook.com/castella/
    • criticism:  slightly dry.  brown sugar visuals isn’t as clean as white sugar
    • made twice, second time used white sugar, and also it took 50 minutes, not 35 minutes for my oven.  Leave oven ajar for about 5 minutes.
  10. Jenn’s chocolate chip cookies:  4.6/5
    • criticism:  inconsistency in choco chips, and too few. a couple slightly overbaked
  11. Chocolate Crinkles II:   2.8/5
  12. Japanese cheesecake again:  3.9/5
    • used springform pan this time, better.
    • criticism:  didn’t rise as much as expected, fluffier than first time, but still not fluffy enough- oven temps are possibly too low, and/or took too much time to set up parchment and pan after whipped egg whites.  sides were overgreased, a bit oily/soggy, and flipping it, it fell apart, but overall success.  Would not do 300-250 degrees again.  Try 320-285 degrees instead.
  13. Sopapilla (Mexican cheesecake pie): 3.5/5
  14. Jjinppang (Korean red bean steamed buns): 4/5
    • https://www.maangchi.com/recipe/jjinppang
    • criticism:  didn’t wait 30 min for buns to rise and become fluffier before steaming, did not close buns successfully, flour slightly got dry
    • very ugly but delicious
  15. Scones + Lemon Curd:  4/5, 4.5/5 
  16. Japanese purin custard:  3/5
    • House brand – Instant mix, uses gelatin, which I don’t eat anymore (animal parts)
    • Just doesn’t look that appetizing, yields 3 mini portions; parents liked it though
  17. Chocolate chip cookies: 2/5 
  18. Pumpkin Bread:  4/5
  19. Quiche with Sweet Onion + Sharp Cheddar Cheese:  4/5
  20.   Tres Leche:  4/5
  21.   Cheesecake (Cheesecake Factory recipe):  3.9/5
  22. Pumpkin Pie Squares: 3.9/5
  23. Oatmeal Raisin Cookies IX:  4.5/5
  24. Sour Cream Muffins: 5/5
  25. Crazy Cake:  3/5
    • Brownie-like
    • Added way too much Bru instant coffee
  26. One Bowl Chocolate Cake III: 4/5 
  27. Martina cookies dipped in orange dark chocolate (sprinkled with pareils): 4.5/5
  28. Grand Marnier Souffle: 3.9/5
  29. Chocolate Pistachio Shortbread cookies:  3.9/5
  30. Pinwheel cake:
  31. Almond Jelly:
    • using agar agar

Ice Cream:

  •  Vanilla ice cream with dark choco chips :  A-
  • Matcha ice cream :  C+ 
    • 3 eggs recipe
    • fatty, with 1 cup milk, 2 cup heavy cream
    • criticism:  failed to temper eggs properly, ruined texture.  overhardened from churning inconsistency, and too much matcha (3 tbs).  Also should not use egg whites
  • Mocha ice cream with dark choco chips:   A-
    • 3 egg YOLKS
    • fatty, very rich, custard-like, creamy with 1 cup milk, 2 cups heavy cream
    • criticism:  not enough chocolate flavor, personally too creamy for me, also didn’t like dark chocolate I used
  •  Strawberry ice cream:  A-/A
    • eggless recipe
    • lowfat, with 2 cup milk, 1 cup heavy cream
    • delicious fresh strawberry flavor!  half pureed, half diced
    • criticism:  not creamy consistency enough, slightly icy
  •  Godiva dark chocolate ice cream:  A                                    
    • 6 egg yolks
    • very rich and creamy
    • added cheesecake and toasted almonds
    • criticism:  slightly too heavy for me
  • Badam ice cream:  A
    • eggless
    • 2:1 heavy cream ratio, less icy!
    • added brownies
  • Coffee milk tea ice cream:  B-
  • Mint chocolate chip ice cream:  B
    • eggless
    • mint extract + vanilla extract
    • criticism:  a bit too sweet (1 cup sugar, less than 4 cups ratio… error)
  •   Red bean ice cream:  A+ 
  • Watermelon Sherbet:  B+ 
  • Vanilla Ice cream II :  B-
  • Cookie dough Ice cream Sandwiches:  C+
  • Mango Sorbet:  A-
  • Ube Ice cream:  A-
    • used 1 cup milk, 1 cup heavy cream, 1 tbsp ube extract, about 5 oz. sweet condensed milk ( I eyeballed it)
    • first batch was burned with coconut milk, dumped 😦
    • deliciousss, even though the ube is imitation and a really small bottle. tasted a bit artificial though
  • Straciatella:  A+

    • eggless
    • used Nielsen-Massey vanilla madagascar bean paste
    • low-fat ratio
    • straciatella technique used with melted drizzled belgian dark chocolate
  • Upcoming ice creams:

Other:

  1.  Shakshuka:
  2. Spiced Naan
  3. Onigiri (spicy tuna)
    • made with onigiri molds
    • spicy tuna = canned tuna mixed with japanese mayo and sriracha
    • sushi vinegar + sushi rice
  4. Gingerbread cookies:  3.9/5
  5.  Pumpkin soup:  5/5
  6.   Fresh Garden Tomato soup:  4.5/5 
  7. Ultimate Twice Baked Potatoes:  2/5         
  8. Dakjim (korean braised chicken w/ glass noodles):  4/5
  9. Korean fried chicken: 3.9/5
  10. Soy sauce Noodles:  4/5

P.S.  I hate how insurance companies and random coordinators from hospitals call me up whenever, so it’s like I have to work extra hard to stay distracted and occupied with other things.  They could call me at 8am, 10am, 2:30pm, 5:00pm, really now.  And not that I’m exactly “busy busy” but I’m sometimes in the middle of sleeping, or washing dishes, making dinner, or in the bathroom, and I just have to drop everything and set aside 15 minutes or however long to discuss things.  I should be officially listed Monday.  A part of me thinks I’m insane for willingly sending myself in for this kind of surgery, the other part of me can’t wait.

Birthday Blessings

I am officially 26! … I have graduated from the bracket of age 18-24, occasionally 18-25.  Apparently I’m not truly “old” or in my “late 20s” until I’m 27.

I feel really lucky to have wonderful family and friends to make me feel loved.  Even though one could argue that my quality of life has gotten worse, that is only physically.  Mentally, I’ve become stronger, not without the help of therapy.  My perspective on life has changed, and I’ve grown more hopeful and better enough to fight for a future that could improve my possibilities of things I could experience, a life that I had only imagined since I’d grown up.  I’d be able to run, hang out with friends an entire day without feeling exhausted, I’d never feel short of breath again from walking a couple blocks or walking up stairs, and I’d never have to feel that dizzy, wobbly, bursted feeling whenever I did try to push that boundary.

I was pretty satisfied with a casual hangout with my college friends last weekend, and determined to enjoy the present for all the happiness it offered.  I kept getting expected and unexpected love, which included 3 delicious cakes, two books, a Nintendo Switch, a Nordstrom gift card, a heated blanket, balloons, flowers, and a lovely Cajun style seafood dinner with family.

My heart is full, and all these memories just remind me not to take anything for granted, and to keep trying my best for an optimal future with the people who matter most.

P.S. Got another last minute visit from my friend and her baby today (Tuesday)!  He is growing up so fast, this is my first time seeing a baby every couple months, and it’s crazy to me how quickly he picks up things and how beautiful of a child he is.  I also have firsthand appreciation of a mother’s full-time work in looking after another human being.  They gave me an orchid plant and another birthday balloon!  Whoo-hoo.  For reals, most of my life I was bitter and resentful of anyone who I thought was a friend but ended up not being there for me.  It may be because of my change in perspective, but all I feel is joy in mattering in other people’s lives, and that I have friends who offer to drive me to UPenn at all touches me.  We don’t know if we have another minute, day, week, years, or a lifetime to spend with our loved ones.  I’d always been on a rush to live as fully as possible whenever my body allowed me, and it only makes me more determined to live longer and healthier because now I have fully understood the meaning of life and my place on this earth, and I will not take it for granted if I had a second chance.

Giving and Receiving Gifts

When you don’t know someone, it’s really hard to buy a good gift for them.  Usually, if I don’t know what to get someone, I’d rather not waste their space or my money, but if I know for a fact, or at least over 50% chance they’ll use it or like it somehow, I feel much more satisfied splurging a little.   I have no problem either with people giving me really nice or expensive gifts alternating years instead of 2-4 cheap, useless items, so that’s my philosophy on gift giving and receiving.

There’s a lot in my life that I don’t feel great about, but I do feel blessed about the wonderful and amazing gifts I’ve gotten from people, with some of them just 100% great, squeezing that usage out of every bit of that tall price.  Sometimes, they’re gifts to myself xD  But one of the most annoying feelings is splurging on something, and realizing it’s only half effective, or it breaks right away.

Sometimes they’re perfect gifts because of how useful they are, but other times they’re perfect because it’s tailor made to that individual’s needs or wants or style.

Some of the stuff I’ve gotten or given that has been A+ satisfactory and #worthit is:

Daniel Wellington watch (broken by my dog though)

Amazon Kindle (haven’t used it much recently though)

Nintendo Switch 

MacAir 

Samsung Galaxy S7 phone

Bose headphones (both times, first one lasted me 5-6 years with daily usage)

“Becoming” by Michelle Obama (usually hate keeping books, but I want to keep this one)

S’well / Hydroflask water bottles 

Helly Hansen base layer jogging shirt 

Earrings (really beautiful pair was for mother from my dad and me, looks perfect on her)

Soma Intimate bras 

Nordstrom tops/dresses 

Taiwan glasses

RavPower phone chargers

Of course, there have been many a regrettable buy as well… the time I spent $80 to add on a dvd player to my macair, and it broke within 2 years… the time I ordered a $50 dress and it was too big and I couldn’t return it… all the random jewelry I got over the years that I don’t really like but keep anyway…

It’s easy to overlook all the nice things I’ve had or given over the span of 26 years, but this is my list, and I do feel lucky looking at the nicest things I’ve ever got to own!  🙂

PS 1. And of course, not to mention, my parents try their best to support my incredibly expensive healthcare needs, which is probably the best gift I could get.  Spending money to rent portable oxygen on flights, to book a cleaner, newer hotel, my daily medications, my oxygen tank at home now, and all random other crap like a heater, humidifier, air filter, nebulizer, doctor appointments, = $$$$$.  @_@ Insurance is definitely something everybody needs, no matter what.  You don’t want to get stuck with a $60,000 hospital stay with no one negotiating the cost down for you.  sigh.

PS 2. Since this post is a bit about consumerism, besides buying reusable metal straws and using refillable water bottles, I also want to start buying from sustainable, ethically sourced clothes brands.  Also,  Quality over Quantity!!

 

Lung Questions and Stresses

  1. Since my diagnosis is obliterans bronchiolitis, with a lung transplant, technically should be cured?
  2. Would the lung function immediately be high, or would it be low and slowly improve over time?
  3. Two incisions under boob (video assisted thoracic surgery?  or one across?  Dr. Cantu had mentioned two incisions which heals faster)
  4. How would we know when we can go off the ventilator?
  5. Are we very conscious the days following surgery?
  6. Chest tubes I heard are painful ?
  7. Dr. lee mentioned some improvements made since the time I got evaluated 2 years ago- can you give me some more info on that?
  8. Support group —> particularly for parents; and info session link.
  9. How would the cold affect my new lungs?  i know sick people are risky, how would that compare to cold weather?
  10. Dr. lee would present to case, then would i be activated on the list?
  11. When we get the call for a lung transplant, do we get to know what the age is of the donor, besides high-risk factors?  What are the determinations for a qualified donor lung?
  12. What is the opinion of the lung transplant’s team ?
  13. Can I go skydiving?

215 662 6200, press 3 for lung team

Emergency call 215 662 4000, ask to be connected to provider on call.


I think because I’ve had therapy for 4 years, I’ve gone through the 5 stages of grief.  Obviously, I’m not “ok”, but I’m okay enough to understand and accept that this is what I have to go through eventually if I want to live.

My mom on the other hand, is definitely going through all stages of grief.  I think even though doctors have told her in the past, she was always in denial and firmly kept believing that there were other things she could do to maintain me where I was.  Like giving me chinese medicine, having me avoid certain foods, and being upset at my dad because he didn’t move us to a warmer climate (California).  While it may be true that that that could’ve helped, or prolonged my diagnosis, it is also true that that would not have been a cure at all.  Functioning at 19% was a miracle for the time that I’ve grown up, but I had never known otherwise.

I’m really worried about my mom and how my parents will handle this, particularly if it goes south.  She kept having a meltdown and saying that there’s no point in living without me, that her meaning in life was for her kids and her family.  It is really burdensome for me to hear this, and part of what is making me uneasy and hesitant to tell the lung transplant team that I’d like to move forward.  Her stress is understandable, but it definitely is bouncing the stress over and over between us.  I want her to separate our lives a bit, because like Michelle Obama said, you are only responsible for your own happiness.   My acceptance and peace that it could all end up okay was faltering, and I ended up having a terrible nightmare of me being chopped into pieces like ham, and being sewn together with body parts of another person.  I saw blood on the bedsheets and all that, it was pretty horrifying.

I also had doubts that I’d have the strength and determination to swallow all those pills daily for the rest of my life.  But of course, when I thought of the bad things, I forgot about the good things, and vice versa.  I was trading in my life now, for a new life where yes, I’d have different risks and complications, but I could be able to breathe and run and dance and travel.  I think I would feel superhuman at that point.

Also, the cabin fever is really wearing me down.  Every winter, I feel like I’ve lost my mind, and wonder how I was able to make it through each year. Quite honestly, the quality of life imo is appalling.