Thursday, January 23, 2014

RIP Helen

On Tuesday, January 14, 2014, we, the members of the Toronto Chapter PH Support Group, lost a dear friend, Helen Britt. Helen and her husband, champion and full time support person Bob, were active members of our group and offered so much support to others while seeking support for themselves. Helen readily volunteered to speak on a few occasions to Pharma and to help ‘educate’ those doing the research to find a cure for this dreadful disease. She was always researching for new facts about PH as well as information to help improve the health and wellbeing of her PHriends and generously sharing them with group. She often presented ideas for our group agendas and on one occasion, at least, she presented the idea for talking about the contributions of patient caregivers. Ever the professional teacher, she prepared and presented the whole group. It was truly appreciated by the attendees!

She volunteered to participate in a project being done by young journalism student at York University about living with a rare disease, and allowed herself to be interviewed and videoed in her home, all in aid of spreading the word about PH.

Helen, like so many people living with PH, lived in hope for a cure or at least for a successful transplant. She remained ever dignified, gracious and elegant. She was an inspiration in her quiet and generous ways. We will miss her light. Our most sincere condolences to her family, PHriends and friends.

A Celebration of Helen’s Life will be held at the Ward Funeral Home, 4671 Hwy. 7 (west of Pine Valley Dr.), Woodbridge, 905-851-9100, on Tuesday January 21, 2014 at 11am.

Breathe easy, Helen.

Monday, June 24, 2013

Hospitalized

My current domain is giving me problems and I'm unable to login to post without redo a fresh WP install. Not looking forward to that.

I was hospitalized for 11 days in early June. At first it started with the darn sore throat. I had it for over 4 weeks. I took Benedryl for seasonal allegeries, Beneylin for coughing, codeine for the coughing. Nothing seems to relieve my symptoms. Then the week I went into the hospital, I had these crazy dry coughing fits. I just could not stop coughing while I'm sitting up. I started coughing up mucus which is new and a good thing. I also had two nights where I puked. These were all good indications that I needed to go to the hospital.

My doc asked me to come see him on Thursday morning. I knew that if I go downtown then it would make sense to get admitted. I did not want to go home empty handed where I might black out, call 911, go to York Central and be incubated. This seems to be the cycle in the pass. My doc was quite relieve to hear that I wanted to be admitted.

Once at St Micheals, they set me up on 2 IV antibiotics. The next day, Friday, I was sent to do a CT scan in the AM and I was completely out of breathe. Even getting up from my bed to the toilet was a lot of work. I had to be on 6L of oxygen. When I came back from CT scan I put on my bipap and tried to sleep. I had trouble breathing even with the bipap, I was breathing way faster than the machine could put on. This went on for about 20mins until a nurse came around to do her rounds. Well, fuck no wonder. My O2 stats destat to low 70s. I had the nurse bump up my O2 flow from 2L to 6L. At this point, I was feeling really discouraged and thought that I might die.

The doc later came by and asked if they could take me to ICU for the weekend for closer monitoring. My first thought was I would be incubated. I told them I do not want to be incubated unless I pass out. Also no trach! Doc said they have a private ICU open so I said okay. 1 RT and 2 ER docs tried to get a ABG and failed at a total of 6 times. They even used an ultrasound scanner which I've never seen one done before. Total failure. hahaha. My poor wrist. It seems harder and harder to get ABG now. Although, there's one RT that get it on first tries every time. I like her!

Once in ICU I finally got some solid hours of sleep. I spent 2 nights in ICU and they kicked me back to 6Bond. My appetite had been pretty poor and difficult to eat much food. Did you know St Micheals now give out snacks twice a day? Snack as in a chocolate bar and bag of chips! I lost a total of 4 lbs.

Back on the floor, I slowly started to feel better as each day went by. The IV antibiotics must be working! By day 9 I was getting ready to go home! Thank you to all who came to visit me! I had new visitors every day which help make time go by faster.

I realize now that most diagnostic tests are useless, especially chest x-ray. I refuse to take any more radiation to my chest as 99% they can not see anything "abnormal" as my chest xray is always abnormal looking. Another test that is useless is PFT. My FEV1 is always at 15%. My doc agree with me that my numbers are so low and always the same because output is too low. It is broken.

I also met a lot of cystic fibrosis patients. In case, you don't know CF. Cystic fibrosis (CF) is an inherited (genetic) disease in which excess mucus clogs the lungs, prevents food from being digested, and damages the reproductive system. I have a lot of respect for them and what they have to deal with on a daily basis. The amount of medications they take. Numerous weeks stay at the hospital for tune up. Poor life expancy. It is insane.

I first learned more about CF after watching the film 65Red_Roses. I recall watching her film first then shortly after found that Eva had passed away. Many of the struggles that Eva had, I could totally relate too. I have never met anyone whom I don't know touched me in the way she has. She has done remarkable work for CF and continues to do so. Read more about her here and be sure to check out her documentary film - 65_RedRoses. Love, love, love.

My final diagnosis during my June hospitalization was chronic respiratory failure. GREAT.

Sunday, April 21, 2013

Lung Transplant

Many people have asked me if I’m on the “list”. Unfortunately I am not a lung transplant candidate.

I went to see the Lung Assessment team at TGH when I was 20 years old. During that time my lungs condition dare I say was pretty good. I was able to do normal activities but still felt SOB walking long distance, but that was solved by taking rests. It was “normal” for me. I used a bi-pap at night and only 1L of oxygen during the night.

When I retired from Sick Kids, they sent me to TGH to see Granton as a follow-up Respirologist. At the same time they did a work up for possible lung transplant. I wasn’t really informed or cared about my health back then. I thought it was crazy that I would need new lungs one day, I mean my lungs were working just fine.

Coincidentally, Granton was also a Pulmonary Hypertension specialist! But I was not diagnosed at that time yet. I recall him saying to me, “Your lungs will naturally deteriorate when you hit your mid-20s.” And that was exactly what happened on my 25th birthday! I was dx with PH. He predicted this would happen! For some reason Granton did not leave a good first impression with me so I started to see another Respirologist at St. Micheals Hospital whom I really admire and respect. However, I hear only all good things about Granton so I have nothing against him.

If you asked me 5 years ago if I could, would I do a lung transplant? I would say, hell no. It was too frighten to undergo that process. Ask me that today? hell yes. I would do anything to be a candidate as that is really my last chance for a normal life. I am unfortunately not a candidate because of my kyphoscoliosis.



Severe musculoskeletal disease affecting the thorax, e.g., kyphoscoliosis, is a relative contraindication, and progressive neuromuscular disease is an absolute contraindication to lung transplantation.
International Guidelines for the Selection of Lung Transplant Candidates



Now I’m at the dead-end with no treatment options left. My lungs will deteriorate to the point where I’ll probably need bipap support 24/7. Next, A tracheostomy will probably help me stay alive but there’s no way I want a tube in my neck, can not eat or talk. I have told the medical team that I do not want a tracheostomy. So you see, I have no options left than a slow dying death. Ha Ha. Okay, not funny but it is reality.

Be a Donor
If you live in Ontario, please consider to sign up to be a donor. You don’t need your organs/tissues after you die and 1 organ can save up to 8 amazing lives! Organs and tissue that can be donated include the heart, liver, kidneys, pancreas, lungs, small bowel, stomach, corneas, heart valves, bone and skin.

Even though I have shitty lungs, I still signed up. Please go to beadonor.ca in Ontario.

Monday, February 18, 2013

Ten Random Things About Me

1. I don't wear any socks unless its long stockings.

2. I eat the same breakfast everyday 6-7 times a week - 4 pcs of bacon, boiled egg, hash brown with ketchup

3. For one reason I've stopped drinking cold drinks. I only drink tea now and sometimes my SB latte. Strange, I used to not drink enough liquid but now I drink lots.

4. I don't drink water - bottled/tap. Unless its Fiji water I'm not drinking. :P

5. I was a very quiet kid growing up. I don't know why.

6. I lived in a bubble when I was in elementary school. I thought all families were the same as mine. A nuclear family. Little did I know there's a whole different world out there.

7. My first experience with death was my school's friend AS in grade 8. Her mother passed away suddenly from a brain hemorrhage. It was so sad. I remember seeing her mother couple days before her passing. She was helping us with our science project. She looked perfectly healthy. Then the next week, she was not in class and we were told her mom passed away. She called me to tell me details of the funeral. I attended. I remember the mirrors in her hallway were all covered up. Gawd, I didn't know what to say to her but I'm sorry.

8. I love violent and bloody movies. No sappy movies please. - Django Unchained, Seven, Fight Club, Black Swan

9. I collect things that people have written to me. Some back from elementary school days, get well cards, Birthday cards, Christmas cards, postcards from adventures, notes exchanges from Willowbrook days. I still have them all. :)

10. I feel my time is running out soon. Going to ask my doc what my prognosis is. However I don't think he can give me an answer. If I KO tomorrow I think I may be fine with it cuz living now really sucks.

Saturday, February 9, 2013

Butter Pound Cake

Pound cake has always been a favourite of mine since I was a child. There was this one brand that made it deliciously good that is sold only at Longos. It comes in a white box. They bake several other baked goods too such as their soft chocolate chip cookies, chocolate cake, etc. I also notice the price increase as long went by. I think it retails for about $7 last I checked.

I also finally purchased a Artisan 5-Quart Stand Mixer in Onyx Black. Something I have wanted for a long time but wasn't sure to take the plunge to purchase it. They have a rebate program for the Mixer series for $80. So in the end I only pay $316.34 - $80 = $236.34 which I think is a pretty good deal!

So far I've only tested it twice with same recipe. I like it. I'm going to test a few others that require yogurt and or buttermilk.


Vanilla Pound Cake - By The Canadian Living Test Kitchen

Source: http://www.canadianliving.com/food/vanilla_pound_cake.php


Bakers of all stripes want this classic in their collection – as well as their freezer. A true pound cake relies on beating each egg thoroughly since there's no baking powder. This is a good time to use imitation vanilla extract, because there is less flavour evaporation than with pure vanilla extract.



Ingredients
1 cup (250 mL) unsalted butter
1-1/2 cups (375 mL) granulated sugar
5 eggs
2 tbsp (30 mL) milk
1 tbsp (15 mL) artificial vanilla extract or pure vanilla extract

1/2 tsp (2 mL) salt
2 cups (500 mL) sifted cake and pastry flourPreparation

Line 9- x 5-inch (2 L) loaf pan with double layer parchment paper; set aside.

In large bowl, beat butter until light and fluffy; beat in sugar until combined. Beat in eggs, 1 at time and beating each for 1 minute. Beat in milk, vanilla and salt. Stir in flour until no longer streaky. Scrape into prepared pan, smoothing top.

Bake in centre of 325°F (160°C) oven until cake tester inserted in centre comes out clean, about 1-1/4 hours.

Let cool in pan on rack for 30 minutes. Turn out, right side up, onto rack; let cool completely. (Make-ahead: Wrap in plastic wrap and store for up to 2 days. Or overwrap with heavy-duty foil and freeze for up to 2 weeks.)

Sunday, January 27, 2013

It's Almost 6AM and I can't Fall Asleep

What is wrong with me!? I am having Zipoclone withdrawal. My insurance denied to pay for my refill because I am refilling it too early - 6 days early. Smart little fuckers. I have a 30 day supply. On some nights I double up because I just can't sleep. Apparently, I'm not allowed to do that because then I won't have enough pills to last the 30 days.

It's been 3 nights of being awake at this godly hour. I can't believe I'm so attached to his drug. I don't even believe it works that well as there are still some nights where I don't sleep till 5AM. Nothing as bad as these past 3 nights where I've been awake till 9AM or so. I have 5 days left.

I've been stubborn for not wanting to pay full price for the drug but I guess I give up. I need my Zipoclone.

My doc also told me not to take double dosage so I guess I'll stop that.

I seriously believe it's my shitty lungs that prevents me from sleeping...

Monday, January 7, 2013

The Worst Year of my Life Review

A recap in review for 2012

Jan
- started going to work on time 10-5pm for 3 days a week
- Hooray Frankster is in town. We had family dinner at Magic Wok. First time!
- KaKa came to visit from Seattle. I fainted when she arrived and she did CPR. EMS to rescue.
- Stayed 2 weeks at York Central, declined to go to St. Michaels and went home to rest. In retrospect perhaps I should have gone to St. Michaels. Whatever.

Feb
- attended Dennis and Ramona's wedding. My voice has not return so I was completely mute.

March
- My cousin Esther and her husband came to visit me from Edmonton. Fun week of activities.
- Shortly after they left, I had episode of massive hemoptysis and passed out. EMS was called and I stayed at York Central for 2 weeks then transferred to St.Michaels ICU for 1 week then 1 week in 6Bond. I was intubation for almost 3 weeks. I was pretty nerve racking when they extubate me. The ICU team were doing their rounds and there were at least 6-8 doctors surrounding me. I told them I was nervous and asked for them to leave. The RT removed the tape then pulled the tube out. I closed my eyes. When I saw the tube out it was rather short. There biggest concern was that I wouldn't be able to breathe on my own. But I did OK. Remained on the bipap for the next few days.
- 3 people died in ICU while I was there. Although when I told my mom to ask the nurse she said they did not die? WTF. They closed their blinds all night. In the morning someone came to take the body away. Please tell me I was not hallucinating!?

April
- Dora and I attended Oprah Lifeclass Tour at the Metro Convention Centre. It was fantastic and we were treated VIP style. Hehe! We were upgraded to Row10 from the stage. Mind you there were 10,000s of people jammed packed in one room.
- told work I can not return so I remain on leave of absence indefinitely. Yay benefits. Bye bye to the working world. :(

May
- first evening out this year. Attended Cheryl's bachelorette party at El Convento Rico (gay bar). Fun times.
- attended PH Golf Kids to raise funds for PHA Canada

June
- toss and turn on deciding if I should go to Florida for the International PH Conference. I had a chronic cough but in the recent weeks it started to get better thanks to the codeine. So yes, I decided to go
- after hours of flight delays we finally made it to Orlando. 48 hrs in Orlando!
- reunited with all the PHA Canada gang
- started taking 7.5mg Zipoclone

July
- G's birthday bash at the Mansion
- Kelly's baby shower for baby Lucas
- bought a treadmill but I hardly use it. It's now my living room decoration
- went to Coldplay Mylo Xyloto concert with hooeyJ - best fuckin concert ever!
- my birthday - invited the guys over and I cooked them a full meal
- Auberge du Pommier birthday date with Dora

August
- Yve's bridal shower
- Yve's wedding reception
- Denny&Ramona's baby shower with the bouncy castle
- Kat's baby shower
- Scarpetta date with Frankster

Sept
- feeling emo. Don't remember what happen this month

Oct
- PC and Nancy wedding reception
- Uncle in town for 5 days, went out to eat nonstop at Terroni, Yangs, Magic Wok, Solo Sushi.
- watched Amaluna Cirque du Soleli

Nov
- Vegas Night fundraiser raised over $11,000 for PHA Canada. I personally started contacting companies requesting for donations in July and received over $2,000 worth of items!
- 6 Minute Walk for Breath was a success

Dec
- went to One of a Kind Show to buy $70 worth of shortbread cookies
- finally got my stupid hair cut and donated to Pantanee
- hot pot for Christmas with cousins, and Frankster's family

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Thursday, December 27, 2012

People Come into Your Path for a Reason, Season, or Lifetime.

I came across this poem and really liked it. So I thought I'd share:

People Come into Your Path for a Reason, Season, or Lifetime.
When you know which one it is, you will know what to do with that person.
When someone is in your life for a REASON it is to meet a need you have expressed.
They have come to assist you through a difficulty…
To provide you with guidance and support…
To aid you physically, emotionally or spiritually…
They may seem like they are a godsend, and they are.
They are there for the reason you need them to be.
Then without any wrongdoing on your part, or at an inconvenient time, this person will say or do something to bring the relationship to an end.
Sometimes they die…
Sometimes they walk away…
Sometimes they act up and force you to take a stand….
What we must realize is that our need has been met, our desire fulfilled…
Their work is done.
The prayer you sent up has now been answered and now it is time to move on.
Some people come into your life for a SEASON.
Because your turn has come to share, grow or learn.
They bring you an experience of peace or make you laugh.
They may teach you something you have never done.
They usually give you an unbelievable amount of joy.
Believe it, it is real. But only for a season.
LIFETIME relationships teach you lifetime lessons.
Things you must build upon to have a solid emotional foundation.
Your job is to accept the lesson, love the person, and put what you have learned to use in all other relationships and areas of your life.
It is said that love is blind, but friendship is clairvoyant.
Thank you for being a part of my life…
Whether you were a reason, a season or a lifetime

~ unknown author

Sunday, December 23, 2012

Christmas is Around the Corner

Can't believe it's Christmas in just two days. I've always like this time of the year. The togetherness of families and friends it brings. When we were younger it was always my family that hosts the big Christmas dinner. 5-6 families would come to our house to for big dinner, older grandparents would play ma-jong all night and the kids would just mingle and play. We would almost always cook the same foods for as long as I can remember. A roast beef with gravy, sweet corn, cooked ham, potatoes, rice, vegetables, garlic bread and a lasagna.

After my mom and dad split in 2005, I moved into a smaller house with my brother and dad. We no longer have the extended family dinner over for Christmas. Everyone have grown up now, my cousins are married, and one just had a baby boy. I'm actually the next in line to get married. Ha! Not happening. It is strange now because the only time I'll see my extended family will be on Chinese New Year and at funerals.

This year we are having a small dinner at my mom's place. Including my cousin family, grandma, great aunt and great uncle and F and his family. We are not doing our traditional roast but will be doing a Hot Pot!

Oh, and I've been getting questions on my emo comment I made on Facebook today: Why do people give each other gifts on Christmas Day? Unless you can get me a pair of new lungs, please do not get me anything.

I just don't get why people get so stressed about finding a gift and shopping mad at the mall. !!!???!!

I only purchased for three people his year so consider you three my favorite people. Hahahaha. And they are not my family. We don't do gifts.

So happy holiday and merry Christmas to all. Thank you to following along our journey.

Wednesday, December 12, 2012

Off with Your Hair

I want to write more but my life is so boring now there is nothing to talk about. Oh, I know, let me share with you my shitty experience at the hair salon last week. I finally decided to cut off my hair. All 18" of it. Pretty bold move as I never had hair this short before. =(

I purchased a Groupon for a haircut and colour. Book appointment and arrived on time. The lady saw me and said she will not colour my hair because I was wearing oxygen. Wtf! I understand that the strong smell can irritate you but I had my hair colored before and it was not a problem.

She said she would only color my hair if I bought a doctor letter. Uhh no, I'm not coming back with a note. Fine, so I asked if they can colour my mom's hair instead. She said, NO, can not open a separate file. Wtf bitch! She showed no compassionate whatsoever. I think she was the manager too.

How convenient for them that the service is already paid for. I'm pretty sure if I was a regular customer they would have no problem taking my money. I am so pisssed! I am still so pissed thinking about it. Isn't this like discrimination!?

I emailed Groupon about my experience and waiting for their response. I would be happy with a refund and a blast on the intarweb bad mouthing this salon. I already wrote angry comments on yelp, yellowpages, and ratemysalon.

fuck!