Ottawa today with Memere!

Well, today i headed off to Ottawa, as per Toronto's request for PFT and blood work, and I visited with one of my favorite Dr.s, whom i hadn't seen since my transplant.  And the results of my PFT are as follows...

FVC: 2.73 OR 70%

FEV1: 2.08 OR 62%

My doctors aren't worried about it, as i have had the same results over the last few PFT's that i have done.  I will have to call Easy call and let them know what is happening, but I don't think they will be too disappointed.  Around thanksgiving last year, I had a positive CMV result, that landed me in the hospital with IV treatment for two weeks, on Gancyclovire.  So it wouldn't surprise me if it crept up again to see me, and check out the new digs again.  Well like Shakespeare said in one of his plays, "Out damn spot" and so it will be.

A little bit about CMV, I know I might have posted this a while back, but to refresh everyone's memory let me tell you a little more about it, from the people online at the some medical place somewhere in the world.

CMV - immunocompromised host

URL of this page: http://www.nlm.nih.gov/medlineplus/ency/article/000663.htm

URL of this page: http://www.nlm.nih.gov/medlineplus/ency/article/000663.htm

Cytomegalovirus (CMV) is a member of a group of herpes-type viruses that can cause disease in different parts of the body in people. This article discusses CMV in people with weakened immune systems.

Causes

Most humans are exposed to CMV in their lifetime, but typically only individuals with weakened immune systems become ill from CMV infection. Usually, CMV produces no symptoms. However, serious CMV infections can occur in people with weakened immune systems due to  organ transplants, or medicines that suppress the immune system.
A CMV infection may affect different parts of the body. Infections include:

• CMV esophagitis (infection of the esophagus)
• CMV gastroenteritis (infection of the stomach or intestines)
• CMV retinitis (infection of the eye)
• CMV pneumonia (infection of the lung)
• Mononucleosis-like illness

Once a person becomes infected, the virus remains alive, but usually dormant, within that person's body for life. Rarely does it cause recurrent disease, unless the person's immune system is suppressed due to medication or disease. Therefore, for most people, CMV infection is not a serious problem.

Symptoms

The symptoms of CMV infection are similar to those of mononucleosis. In fact, in a small percentage of people with mononucleosis, CMV is the cause. The symptoms of primary CMV infection are:

• Fatigue
• General discomfort, uneasiness, or ill feeling (malaise)
• Joint stiffness
• Loss of appetite
• Muscle aches or joint pain
• Night sweats
• Prolonged fever
• Sore throat
• Swelling of the lymph nodes
• Weakness
• Weight loss

In immunocompromised people, CMV can attack specific organs. The major symptoms of these organ-specific infections are:

Lung:

• Pneumonia with impaired oxygen uptake (hypoxia)

Gastrointestinal:

• Diarrhea
• Swallowing difficulties or pain
• Ulcerations with bleeding

Exams and Tests

Blood and urine tests can detect and measure substances specific to CMV. A tissue biopsy is often required to be certain of the diagnosis (except in the eye or nervous system).

Treatment

Several antiviral medications are available to treat CMV. These medicines require close monitoring for side effects. Antiviral drugs can help stop the virus from copying itself within the body. However, the drugs do not eliminate the virus from the body.

Outlook (Prognosis)

CMV infection in an immunocompromised person can be life threatening. The severity of the disease depends on the strength of the person's immune system. Research has shown that people who have had a bone marrow transplant have the highest mortality risk.

Any immunocompromised person, whether an HIV patient, organ transplant recipient, bone marrow transplant recipient, or other, should seek medical advice if any signs of infection occur.

Possible Complications

• Blindness
• Kidney impairment (from medications used to treat the condition)
• Liver damage
• Low white blood cell count (from medications used to treat the condition)
• Meningitis
• Pneumonia

Alternative Names

Cytomegalovirus - immunocompromised host

This will always be a possibility as my donor tested positive for CMV and I was negative. I have had a bought with it last year and it can come back, and if it does, i will attack the son of a bitch with everything i have.  Take that CMV, now let's see who is in charge.

When my results come back, I will keep you all informed as to what they say.  No more messing around, things like this need to be expressed and shared within the community at large.  Transplant is not a cure, it's a temporary solution to an ongoing problem in the CF community.

Let's fight to make CF stand for Cure found.

Lot's of love and prayer

Ali

1989-2000 Holiday Barbies

So ladies and gents, i am officially cleaning house.

I have the 1989 - 2000 collection of Holiday Barbies still in the box, all but 1989 when I was young and didn't realize I wasn't supposed to play with them.  But the years after that one are still in their original boxes, with the ornaments they came with.  Everything about them is perfects.  They have been in a none smoking home, and in the closet for a long time, so no colors have faded or anything.

Why am I selling them you ask...

Well to be honest, I don't collect them anymore, I don't and won't have and children to pass them along to.  I am hoping they will find a good home in one of my readers who cam appreciate that Barbie is now officially old.  Okay, okay so 50 or is it 60 isn't old, but it is a lifetime of collections.

I need to rid myself of old baggage and make room for more memories of new.

Here are some pictures of my dolls, well they aren't' my dolls these are images from the web that I am using cause mine are pretty much exactly the same.

And here they are...

For some reason I think I might have more than this in my closet, but these are some images of the dolls I do have.

When I get home, I am away at the moment, I will take my own pictures of these dolls and have them up.

Happy holidays everyone.

See you soon

Ali

FDJ - "WOMEN WHO SHAPE OUR LIVES” : REAL WOMEN MODEL CONTEST

Hey Friends,

Vote for me, I want to win!

Ali

FDJ - "WOMEN WHO SHAPE OUR LIVES” : REAL WOMEN MODEL CONTEST:

"FDJ - 'WOMEN WHO SHAPE OUR LIVES” : REAL WOMEN MODEL CONTEST"

Well I am in Grade 2!

As of the 10th of November, I had been classsified a Grade 2 Rejection patient.  Luckily for my Transplant friend or BFF Ashley, her 18 month assessment went a little smoother than mine.  that's okay Ash, because my lungs will kick your lungs ass on the next bronch. lol

Grade 2 Rejection is cleared up mostly by taking IV medication for three days, which i took.  I was on IV Solumedrol 1 a day for an hour, for three days.  All went well, this in turn made me very tired, halfway through the treatment i would be slouching on my couch just waiting for the last 30 minutes to infuse so i can go to sleep, and just let nature take it's course.  Because they couldn't use my port, with the tissue blockage and all, I was forced to get an IV in my arm, that actually lasted more than a day.  Thank god for that.

Solumedrol... what is it you ask, here is the scientific definition of SOLUMEDROL:

Solu-Medrol Solution is used for:

Solu-Medrol Solution is a corticosteroid. It works by modifying the body's immune response to various conditions and decreasing inflammation.

Important safety information:

• Solu-Medrol Solution may lower the ability of your body to fight infection. Avoid contact with people who have colds or infections. Tell your doctor if you notice signs of infection like fever, sore throat, rash, or chills.
• If you have not had chickenpox, shingles, or measles, avoid contact with anyone who does.
• Tell your doctor or dentist that you take Solu-Medrol Solution before you receive any medical or dental care, emergency care, or surgery.
• Diabetes patients - Solu-Medrol Solution may affect your blood sugar. Check blood sugar levels closely. Ask your doctor before you change the dose of your diabetes medicine.
• Talk with your doctor before you receive any vaccine while you are using Solu-Medrol Solution.
• Solu-Medrol Solution has benzyl alcohol in it. Do not use it in NEWBORNS or INFANTS. It may cause serious and sometimes fatal nervous system problems and other side effects.
• Lab tests, including adrenal function, blood pressure monitoring, and eye exams, may be performed while you use Solu-Medrol Solution. These tests may be used to monitor your condition or check for side effects. Be sure to keep all doctor and lab appointments.
• Solu-Medrol Solution may interfere with skin allergy tests. If you are scheduled for a skin test, talk to your doctor. You may need to stop taking Solu-Medrol Solution for a few days before the tests.
• Corticosteroids may affect growth rate in CHILDREN and teenagers in some cases. They may need regular growth checks while they use Solu-Medrol Solution.
• Solu-Medrol Solution should be used with extreme caution in CHILDREN; safety and effectiveness in children have not been confirmed.

Possible side effects of Solu-Medrol Solution:

All medicines may cause side effects, but many people have no, or minor, side effects. Check with your doctor if any of these most COMMON side effects persist or become bothersome:

Dizziness; facial flushing; headache; increased sweating; mild nausea; pain, swelling, or redness at the injection site; stomach pain or bloating; vomiting.

Seek medical attention right away if any of these SEVERE side effects occur:

Severe allergic reactions (rash; hives; itching; difficulty breathing; tightness in the chest; swelling of the mouth, face, lips, or tongue); bloody, black, or tarry stools; changes in body fat; changes in menstrual period; chest pain; fainting; fever, chills, or sore throat; increased hunger, thirst, or urination; mental or mood changes (eg, depression, personality or behavioral changes); muscle pain, weakness, or wasting; seizures; severe nausea or vomiting; shortness of breath; slow, fast, or irregular heartbeat; slow wound healing; stomach pain; sudden, severe dizziness or headache; swelling of the feet or legs; tendon, bone, or joint pain; thinning or discoloration of the skin; unusual bruising or bleeding; unusual skin sensation; unusual weight gain; vision changes or other eye problems; vomit that looks like coffee grounds.

 So this is what I dealt with for three days.  Yeah, fun!

I had gone to my Dr's in Toronto about 2 months after my 18 month assessment, and they had told me that my results came back from my Bronch showing Grade two rejection, this was how they treated it.  I have been taken off Cyclosporin and put on PROGRAF or Takralimus witch is stronger Anti rejection medication.

Here is the definition of that Medication:

Tacrolimus Capsules is used for:

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Preventing organ rejection in patients following liver, kidney, or heart transplant. It may be used along with other medicines. It may also be used for other conditions as determined by your doctor.

Tacrolimus Capsules is an immunosuppressant. It blocks the action of certain blood cells (eg, T lymphocytes) that can cause the body to reject the transplanted organ

How to use Tacrolimus Capsules:

Use Tacrolimus Capsules as directed by your doctor. Check the label on the medicine for exact dosing instructions.

• You may take Tacrolimus Capsules by mouth on an empty stomach or with food. However, you must take it the same way each time for it to work best. If you take Tacrolimus Capsules on an empty stomach, always take it on an empty stomach. If you take it with food, always take it with food.
• Grapefruit and grapefruit juice may increase the risk of side effects from Tacrolimus Capsules. Talk to your doctor before including grapefruit or grapefruit juice in your diet while taking Tacrolimus Capsules.
• Tacrolimus Capsules works best if it is taken at the same time each day.
• Continue to take Tacrolimus Capsules even if you feel well. Do not miss any doses.
• If you miss a dose of Tacrolimus Capsules, contact your doctor right away.

Important safety information:

• Tacrolimus Capsules may cause drowsiness and dizziness. These effects may be worse if you take it with alcohol or certain medicines. Use Tacrolimus Capsules with caution. Do not drive or perform other possibly unsafe tasks until you know how you react to it.
• Do not change your dose of Tacrolimus Capsules without first checking with your doctor.
• Tacrolimus Capsules may increase your risk for developing skin cancer. Avoid using sunlamps or tanning booths. Limit your exposure to the sun. Use a sunscreen or wear protective clothing if you must be outside for more than a short time.
• Check with your doctor before you drink alcohol while you are taking Tacrolimus Capsules.
• Check with your doctor before you use a salt substitute or a product that has potassium in it.
• Tacrolimus Capsules may lower the ability of your body to fight infection. Avoid contact with people who have colds or infections. Tell your doctor if you notice signs of infection like fever, sore throat, rash, or chills.
• Tacrolimus Capsules may increase the risk of certain infections, especially inactive viral infections, including BK virus-associated nephropathy and JC virus-associated progressive multifocal leukoencephalopathy (PML). These infections can lead to serious, sometimes fatal, outcomes. Contact your doctor right away if you experience clumsiness, weakness on one side of the body, trouble speaking (eg, word-finding difficulty, slurred speech), or loss of vision.
• Do not receive a live vaccine (eg, measles, mumps) while you are taking Tacrolimus Capsules. Talk with your doctor before you receive any vaccine.
• Patients who take Tacrolimus Capsules after an organ transplant may have an increased risk for developing high blood sugar or diabetes. The risk is higher among black and Hispanic patients after a kidney transplant. High blood sugar may make you feel confused, drowsy, or thirsty. It can also make your flush, breathe faster, or have a fruit-like breath odor. If these symptoms occur, tell your doctor right away.
• Lab tests, including blood counts, blood potassium and glucose levels, kidney function, heart function, and blood pressure may be performed while you use Tacrolimus Capsules. These tests may be used to monitor your condition or check for side effects. Be sure to keep all doctor and lab appointments.
• Caution is advised when using Tacrolimus Capsules in CHILDREN; they may be more sensitive to its effects, especially lymphoma.

Possible side effects of Tacrolimus Capsules:

All medicines cause side effects, but many people have no, or minor, side effects. Check with your doctor if any of these most COMMON side effects persist or become bothersome:

Back pain; constipation; diarrhea; dizziness; headache; joint pain; loss of appetite; nausea; stomach pain or upset; trouble sleeping; vomiting.

Seek medical attention right away if any of these SEVERE side effects occur:

Severe allergic reactions (rash; hives; itching; difficulty breathing; tightness in the chest; swelling of the mouth, face, lips, or tongue); chest pain; dark urine; decreased coordination; diabetes (frequent urination, increased thirst or hunger); fast or irregular heartbeat; fever, chills, or sore throat; mental or mood changes (eg, anxiety, confusion); one-sided weakness; painful urination or changes in the amount of urine; red, swollen, blistered, or peeling skin; seizures; severe or persistent dizziness or headache; shortness of breath; swelling of the hands, feet, or legs; tingling or numbness in the hands or feet; tremor; trouble speaking; unusual bruising or bleeding; unusual lumps or skin lesions; unusual weakness or tiredness; vision changes; yellowing of skin or eyes.

Some more things to keep in mind.  

Hey the more you know, the better you can understand what your body is going through. I think it's good to know as much as you can about what is going on in your body, so you can better appreciate the gift of life, and love you have. 

So i will keep you all posted as to what is happening in my world.  The world of Lung Transplantation.  I am not afraid, so please do not be afraid for me.  Keep me in your prayers, and thoughts, I will promise you that i will fight the fight to saty with you all.  That is my main focus.  Stay healthy and LIVESTRONG!

Love you all

Ali

News, news, news!!! All new!

Well this week was a whirl wind of fear, disappointment and not understanding how science and nature work.

On Tuesday November 9th, i got a call from my nurse Coordinator in Toronto.  she's the one who leaves us Easy Call messages to respond to.  Only problem is that this call wasn't VIA easy call, it was a direct call from the Transplant unit to my husbands Cell phone, as that was the number they have on file for important phone calls that can't be made or left on a message.

This stated when i had mu bronch done in August, and everything was well.  I got a Easy call message stating the I had Grade one rejection, nothing to worry about they just increased my Cyslosporine to 175 in the morning and at night, and i was to follow up with another bronch in a few weeks.  Well that day was November 2nd 2010.

So off to Toronto i headed for more testing.  I know this may sound weird and kind of out of the ordinary.  But i honestly love getting Bronch's done, maybe it's got something to do with the fact that I don't drink, and it's my high of sorts.  i like that fact that Medicine can do these things to detect the things that need to be done, and fixed.

So I thought everything was going great until i got the results back form that Bronch within a week.  When they results come back that fast there must be something up.  And of course there was.

I was diagnosed with Grade 2 rejection.  What happens in this case is that the medication i on, isn't working well, and they request vigorous IV treatment with high potency Steroids to bet things rolling in the right direction.  I was say when I first heard about it, I cried, my husband was scared a is was.  I managed to survive the night by being as positive as possible and making the best of something i cannot control.

Life hands you lemons and you make lemonade, or God hands you something, and you educate everyone, and never let them see you cry, never let them see you weak, because when you get weak, the worst always happens.  Positive thoughts lead to positive reactions.  And that my friends is a fact.

So The meds started on Wednesday afternoon, and they said the side effects would be bloating, or water retention, swelling of the hands and feet, excessive appetite, and that i would be wired for sound.  Well here are my reactions... Tiredness all the time, swollen hands and feet, and that's pretty much it.  I was expecting the worse, and got the best.  In fact I think my water retention went way down in the meantime.  I also called and asked if i could have this stuff instead of Prednisone... not such luck.

So to day is Friday i have had my last dose of meds, and I don''t really feel any different.  I wasn't able to use my port as I have Fibrin Tissue on the end of it, so the gravity pole wasn't allowing the medication to go through.  So for the first time in as many years, something like 6 or 7 i had to have a Saline lock put in, no PICC line no use of my port, I went old fashioned, and it lasted the full three days that we needed it to.  I have a lot of dishes to catch up on. lol

So no one has to worry things are going great.  I am a little short of breath, but i guess that's normal.  I will keep you more posted on what is happening with me, as I have not been very good at it, at all.  For that i truly apologize.

Love you all and thank you for your prayers and support.

Kisses and love

Ali

To what do i owe the pleaseure.

I am forever thinking about my donor family. i am always wondering why I haven't heard from them. It's coming up to Thanksgiving, and i have decided to send them a little letter. Not giving out too much information, but enough to let them know how important they are to me, how I consider them a part of my family, they are now in my DNA, literally. I have been blessed on so many levels. My heart can barely contain the emotion i hold deep inside, where no one can see them.

Do people not see the pain in my eyes, that is not knowing where my lungs come from. The unknown of who has helped me stay alive and live for another 50 to 60 years. I know it's hard to feel the pain of losing someone so close to you. I understand that they want to be alone, that they want their privacy, but i want to know more about the person who helped me live and the courageous family who helped make that hard decision to allow me to live, while their loved one has moved on.

We were a perfect match, does that mean, on some level we were destined to meet at some point? How do i know I haven't met them already, and this is all a formality. How do i know whether or not this set of lungs is form a young girl or boy. How will i ever know what this person did for a living. And why me zest for life has increased by billions.

I thank god everyday that i can breath, that despite having grade 1 rejection, I am very optimistic that this is going to pass. This is minor set back, a little bump in the road of life. i am thinking of my friends Marc, who is struggling with the decision to get a transplant, and also thinking of my dear friend Meg, who as we speak is in the hospital getting a tune up. i hate tune ups, but having people who are looking out for your best interests is important.

I have a nurse i like to call my guardian angle. Even though we didn't get along so famously in the beginning, we are now a part of each other. She knows what i fell, what i think. Almost like a part of me, in some sense of the word.

My life is like a river, ever flowing and always rejuvenated.

Making choices on how to live your life, can change your life. what you decide ultimately, makes your life different. If i chose not to have the surgery i wouldn't be here. But should have chosen to wait it out, I could still be waiting for lungs. But God has other plans for me. His choice allowed me to live my life for a lot longer than i could have ever imagined. I am  forever grateful for this choice he has made for me.

Until i have another epiphany, i will sign off, with good thought and love in my heart. Prayers to all my Cf friends who need them right now. And sending love to all those who ready this. You are all my life line, an someday, when this blog get's published, my list of recipients far outweigh the choices i have had to make in my life.

Sending the love
 Ali

CBC News - Health - Bob Nesbitt talks about the surgery that saved his life

CBC News - Health - Bob Nesbitt talks about the surgery that saved his life

European Adventures

So yesterday was my fathers birthday, and he spent it drinking a bottle of champagne with my mom in Erope, actually, if I am not mistaken they are in Portugal. Wow, that is some birthday. This whole thing started about 2 years ago when my dad began hoarding his earnings, to create a Europe account. 2 years later, he's gone on a golfing trip with my husband and all his friends from growing up, my dad freinds. Mom's birthday came around while he was away, and it was my job to make it memorable. Boy sis i make it memorable. I had wraped the envelope about their trip in a box, covered in tape, then bubble wrapped it, then stuck it in another box, and taped it like there was no tomorrow. Then a proceeded to wrap this sucker in Christmas wrapping paper, because that was all I had at the time. While my mother opened her strange but unique gift, the letter my father wrote was proceless. I can't put it up here, as i don't remember it word for word. But my mother called my father a liar. Funny as hell. So as she opened her gift(s) she was looking through the pamphlets and it took about 3 minutes for her to realizr that my father had saved up money to take my mother on a European trip for her birthday. That happens to take place while it's my father's birthday. So romantic. Ahhhh. They started a blog about their adventures, and it's so much fun. I am so proud of them. It's been forever that they have wanted to do something like this, and now they are. I have never been more proud of my parents, for finally doing something for themselves, after doing everything for us, for so long. Well deserved Momma and Paw, well deserved. Love and safe travels. Ali

It's in the words...

For those of you looking for a good read in the near future, I highly recommend reading Andre Agassi's biography. He is amazing. When he talks about the pain in his body, I totally understand where he is coming from. Not only did i experience that pain, or something similar, but I can also admit, that I was not privy to being able to lie down on the hard floor to make my back feel better.

My Cf friends will contest that sitting in an upright or laying down in a 45 degree angle, was the only way we could somehow get any rest. Otherwise the mucus in our lungs would growl at us, and suffocate us. Being able to lay down on your back, is a gift, one that a lot of us never get to experience.

Although I cannot say that I am one of those patients any longer. I was lucky, had my transplant and can sleep on any surface, any where at any time. And that is pretty much what i do. I have at least 30 years of sleep to catch up on.

Sending a "SHOUT OUT" to my dear friend Ronnie today. He's in the hospital getting an oil change, tuning up the motor and making sure things run smoothly. And you know what, when he's got all of us here, rooting for him, there isn't anything that can stop us. We're running for you Sick Boy.

I want to write a little quote that I got from Andre Agassi's book... here it is...


"Even it it's not your ideal life, you can always choose it. No matter what your life is, choosing it changes everything."

Isn't that awesome. There are a few other quotes that he uses, but I was stupid not to mark them in the book as I was reading it. This one stood up, and was easy to mark, because I had a post it sitting right next to me on the table when I was reading the last few chapters.

Andre Agassi is an amazing soul. His beliefs are amazing. He met Mandela for crying out loud. There was a quote he got from Mandela's autobiography that really made me smile, but, do you think can i remember the quote, NOOOOOO.

That will be my next read I think, Nelson Mandela's book. Thanks Andre for inspiring me to read Mandela's autobiography and loving reading about who you were, and who you became. Isn't it funny how we always seem to quote other people, but never ourselves. Do you think others quote us, when we say something meaningful and inspirational?


So for those of you who like pictures, like me, this is the cover of Mandela's Autobiography, which I am hoping to get for Christmas... hint hint, to whomever I know is reading this, and wants to get me something for Christmas.

Oh Christmas, why did i have to go and say that. Sorry about that everyone, I'll try not to do it again.

Much love to all, and Get Well wishes to Ronnie and all my other CF friends in for a tune up.

Bless you all.

Ali

BACK IT UP!!!!

Well hi diddly Ho, Neigborino's.

I am in the process of cleaning out my computer. Examining the photos that I have yet to remove from the system, and you wouldn't believe some of the old stuff i have found. I a talking old school. here let my show you, old school of me as a wee bitty baby, and how cute was I. Buddah belly and all.

This is my favorite picture of all times. I am in my blue (favorite colour) footsie pajamas, eating (my favorite hobby) and sitting in our awesome Cow couch, what more could you ask for. I feel so nostalgic. Those were the days. If you think this is cute, wait until I show you some others. 

 Old time photos bring back such fond memories of being a child, having no worries, and being able to eat what you want when you want. Now, it's all because of anti rejections that you have to learn a whole new way of eating. Here's another picture of me as a child, here you can really see my little Buddah Belly, oh how I loved it them it was cute... now... not so much. There I am in my pink overalls, carrying what I think is some kind of stuffed... alien maybe??? Who knows. 

 As i was slowly growing, very slowly, i realized that i am pretty damn cute. i have a wonderful family, with whom I respect dearly. My mother and father, have put up with a lot as a grew up. Lot's physio, medications. There was a time, when we had to pay for all our meds, and that was not cheap. Luckily for kids in Canada, as far as I know, we do not have to pay for medications that will save our lives. We owe that to Mila Mulroney, the wife of Prime Minister Brian Mulroney and mother of Ben Mulroney. 

O Canada, true north strong and FREE. Time goes by, so slowly, when you listen to Madonna. Change it up listen to Dave Matthews,. I know totally off topic... ANYHOW!!! According to the pole i had up on my blog last week, 66% of you think I should get my port replaced... well I think i am just going to get it removed, so when I do get sick, which won't be for a long time, I can just get a picc line. Ask Ronnie, they aren't so bad... RIGHT!!!???? 

Please hold, while I transfer some more documents on to a disc... 

Your patience is appreciated... 

15 minutes later... 

Okay, I am back. How eventful. So now i am going to just mention that i am now a member of TEAM BOOMER. for those of you who don't know, Boomer Esiason is a former NFL Quarterback, who's some was born with CF, he has since started a foundation to help raise funds to support families and research. Check it out at www.esiason.org. 

 Today in the mail, I got my TEAM BOOMER t-shirts and I am so excited to wear them to the gym. CF all the way baby, CF ALL THE WAY!!!!!! Well, I just noticed that it's pretty damn late, and I have to work in the morning, i will keep you all posted about my Port when I find out more. Cheers and pleasant dreams to you all. 

With love Ali

Don't be Scared it's only Grade 1... rejection!

HOLY SHIT!

Pardon my language, but this just in, I have been called on Easy Call, the system transplant patients use to communicate with their doctors and Nurse Coordinators. I got my Easy Call on Monday August 30th, and the message I got wasn't entirely what I was hoping it would be...

The message was neither scary or exciting. a little nerve wracking,... yes definitely. But I can't imagine that after 6 months I went from minor rejection to an actual classification of rejection. GRADE 1. Now i am not entirely sure what Grade 1 means, but this is what i do know....

1) My meds will not change. I was hoping for a reduction in my Prednisone, which makes me fat, and bloated and just not cool with myself,

2) they will increase the amount of Cyclosporine i will take, which is one of my anti-rejection medications,

3) I have to go back to Toronto for another Bronch in 2 months. So the end of October beginning of November, I get to have another bronch done. WOOHOO!!!!!!

My nurse coordinator, Debbie, called me again toaday to inform me that I am growing Pseudamonas, which is what I was growing before my transplant. This is normal in transplant, as the mucus in your sinus' and in your throat will generate again in the lungs, when you cough, sneeze and so forth.

Pseudomonas aeruginosa is a versatile Gram-negative bacterium that grows in soil, coastal marine habitats, and on plant and animal tissues. People with cystic fibrosis, burn victims, and other patients in intensive care units are particularly at risk of disease resulting from P. aeruginosa infection.

I am not worried or anything, but I won't lie, i am and can be a little scared, that, what happened to Eva, might just happen to me. It will eventually happen, but I can only hope for the best, that i will live long like Bobby, and live life to the fullest.

Keep your prayer lines open, I might need you again at some point. But until then, live long and prosper. Stay thirsty my friends. haha

Love to you all

Ali

Surviving cystic fibrosis - Health - Macleans.ca

This article involves the same surgeon, Dr. De Perrot, who saved my life.

I owe him a lot, about as much as I owe my donor family.

I wouldn't be here if his magical hands didn't help in my life saving surgey.

I love that man, and will never forget him.

Love to the De Perrot family always.

Surviving cystic fibrosis - Health - Macleans.ca

Bronchoscopies, who knew!

Ladies and Gentlemen of the jury, the information i bring forward to you this day, will not only shock you into something you didn't know existed, but also prepare you for something a little more, out of the ordinary.

Bronchoscopies are a wonderful thing, after a transplant they can determine if you are "rejecting" your donor lungs. I had mine on the 24th of August, 2010. I took my time that day, waiting to get up to the office, and wait in the waiting room for them to tell me to strip down, and wear two robes. One for the front, and one for the back. I did what i was told to do, as always.

Usually my Bronch's are scheduled for the Wednesday's of my assessments, but this time around they had it on a Tuesday, and not just any Tuesday it was the Tuesday of Paige and Katie's birthday's. As you saw on one of my posts.

Anyhow. For some odd reason, the team up there, had me registered as having MRSA, which is not very cool. MRSA can be defined as the following:

Methicillin-resistant Staphylococcus aureus (MRSA) infection is caused by a strain of staph bacteria that's become resistant to the antibiotics commonly used to treat ordinary staph infections.

Most MRSA infections occur in people who have been in hospitals or other health care settings, such as nursing homes and dialysis centers. When it occurs in these settings, it's known as health care-associated MRSA (HA-MRSA). HA-MRSA infections typically are associated with invasive procedures or devices, such as surgeries, intravenous tubing or artificial joints.

Another type of MRSA infection has occurred in the wider community — among healthy people. This form, community-associated MRSA (CA-MRSA), often begins as a painful skin boil. It's spread by skin-to-skin contact. At-risk populations include groups such as high school wrestlers, child care workers and people who live in crowded conditions.

I don't nor have I ever had MRSA.

So to my astonishment, I was whisked away into a room, a very isolated room, that was cold and not of the fun, light and brightness of the usual room I go to. The windows are closed, the blinds are closed and there is no one to talk to. You are literally ISOLATED! Not fun. usually i have the nurses to joke around with, and tell my funny stories to, but nothing. Then suddenly, there is a knock on the door, and there is a nurse there, in full precaution gear... face mask, gloves, hair net, isolation gown, booties and all the necessities for an IV.

My Port a cath isn't working properly, so I had to have a regular IV. They hurt going in, but the tingling sensation of the needle goes away.

As she has plugged me in, and prepped me with the mandatory throat numbing gargle, and inhaled solution, I am whisked away to the OR, where the begin the process of the Bronch.

First things first. My Doctor, Dr. Lianne Singer, the Dr. responsible for putting me on the list, is my Dr for the day, and i am so excited, I love her. She sees me, laughs, cause i told her the day before at clinic that i love getting Bronch's done. She thinks I am nuts, but I really do love them. She says to me, I'll be with you in a second, I need to change my iPOD song. She changes it to Elvis Costello's song called Alison; i am speechless, Dr. Singer is flushed.

I am given a sedative, as the numb my throat a little more, so i don't really feel anything, and I don't gag as they do it. I used to gag, then they sedated me. I don't know what they give you when they put you under, but they are awesome. I love the sensation of my body when it happens. It's gradual, but it's so relaxing. For an hour i don't know where i am, who I am or what i am supposed to be doing. It's like my kind of drunk, but without the painful side effects of a hangover.

I talk for a little bit, then they stick the spacer in your mouth, so they can guide the camera down your throat. I remeber the guide/spacer being put in my mouth, then... NOTHING! They cover your eyes, and then its just a matter of time, before you wake up in the recovery room, wondering, is it over already... can I do it again! Seriously, i am that weird.

As I come out of my stooper, I think, wow, this technique, this scientific method of dissection is going to help save my life. while they do the bronch, they take a biopsy of the lung, to see what's growing, and if there is any rejection going on. I think this should be done once a year in the CF clinics across the world. How much easier would it be to determine what the hell is going on in there. Just like my theory on Transplant assessments. They should be done as soon as someone's PFT (Pulmonary Function Test) are down to less than 30%. Before they are too sick to be transplanted.

I will get the results in about a week, and when that time comes, and those results come in, you will know, I promise I will tell you all, and you will know.

Until then, my fellow CF masters in crime. I bid you Adieu.

Tootles
Ali

18 MONTH ASSESSMENT!!!!!

Ladies and Gentleman, let me introduce you to my 18 month assessment.

But first let me tell you about the wonderful people who have opened their home to us while we are down there. Derek and I were blessed to spend our 4 days in Mississauga, about 30 minutes outside of Toronto.

We had a wonderful Saturday and Sunday of free time, Travis and Lauren had a little gathering and it was spectacular. Their hospitality will not go unrecognized. Not by us anyhow.

MONDAY: Assessment Day #1

6:00 am - wake up
6:30 - 7:10 am - travel from Mississauga to Toronto General Hospital
7:15 - 7:45 am - get blood work done
8:00 - 8:30 am - Pulmonary Function test & Arterial Blood Gas - have a nice bruise too.

Results of PFT :
FEV 1 @ 2.5 or 94%
FVC @ 3.1 or 87%
8:45 - 9:45 am - Chest CT & X-Ray
9:50 - 11:15 am - sat around trying to waste time, wish i could have slept, but didn't.
11:30 - 11:45 am - 6 minute walk test.
12:00 - 1:30 pm - lunch at the Chinese place. Not bad, not great.
1:30 pm - supposed to go in for doctors appointment.
3:30 pm - actual admitting to doctors office
4:30 pm - Doctor actually came in.

Results of Doctors meeting:

Stop taking potassium tablets, increase Cyclosporine to 175 am & pm. They may reduce my Prednisone level to 5mg instead of 7.5. WOOHOO, this is gret news. But won't hear until after my Bronch which is on Tuesday.

5:00 - 6:30 p, - Toronto General Hospital to Mississauga - TRAFFIC SUCKS!

TUESDAY: Assessment Day #2

8:30 am - meds taken
9:00 - 10:30 am - back to bed
10:45 - 11:30 - clean Travis and Lauren's apartment, it's the least we could do.
12:00 am - Register for Brochoscopy appointment.
12:30 - 1:00 pm - Had IV put in, and took the necessary inhalers for pre Bronc
1:30 - 3:30 pm - Bronc done, and believe it or not i love them.

When I get a chance, I'll post my last Bronc on here if I can get it to work. I don't smoke, don't do drugs and don't drink, but I love being put under for a bronc... I know, I am weird. But hey, if you have to do it, you might as well like it right.

My Doctor, Dr. Singer listens to music while she does her broncs. It's awesome, when I came in, smile and all, she had changed her ipod music to Elvis Costello's song called "Alison". It was awesome. She loves me, and i love her. If it weren't for her following up with me for the last 5 years, I wouldn't be here today.

The doctors in Toronto are amazing. LOVE LOVE LOVE them.

Well, until I get results back from that, you are going to have to keep tight, cause i am just as anxious as you are to hear if I have any rejection or anything like that. also, find out if i can change my Prednisone levels. Woohoo again, that will be amazing.

Well, time to head off to bed.

Love you all
Ali

HAPPY BIRTHDAY PAIGE & KATIE!!!!

I just want to send a Happy 1st Birthday wish to Paige Deborah Hardy.

A Special birthday for one of my favorite little angels.

She is as beautiful as her mother. Happy birthday to my little Darling.

And a very happy 22nd Birthday to Katie Lumley



Love you both so much.

Cath Flow results....

Okay so it's now August 18th, and I am about to tell you the latest on my Port a cath, and what the cath flow did... or didn't do rather.

So cath flow is a product the insert into the port to eat away a the tissue or clot that is forming on the catheter, to help remove it, and allow flow to go through. Well, I had gone for the two hour infusion last week, and nothing happened, so I had to go back on the 17th, yesterday for the 4 hour process. You would think that would work right... yeah well, that's not m case.

Here is what Cath Flow is:

Like naturally forming human t-PA, Cathflo acts specifically on fibrin-rich clots in an occluded catheter.

• Cathflo causes the conversion of plasminogen to plasmin
• Plasmin dissolves fibrin in a clot, which results in thrombotic breakdown
• With the clot dissolved, any residual debris can be aspirated from the catheter, and central venous access is restored
• With Cathflo, there is limited systemic exposure because it works by dwelling in the catheter in direct contact with the clot
• Because it has a short half-life, circulating plasma levels of Cathflo are not expected to reach pharmacologic concentrations, even if a small quantity enters the bloodstream

* The clinical significance of fibrin specificity is unknown.

So I headed out to Ottawa, the Civic Campus of the the Ottawa Hospital. Not the kind of place I want to spend my day. Dark, gloomy, reminds me a lot of St. Mike's simply because it's old. I wish I had taken a picture of where i was sitting for four hours, while i was being infused with this stuff.

The nurse who performed the procedure was awesome. But i mean, come one make it a little more patient friendly. If you know what I mean. i was there for a little over 4 hours, and was never offered a drink or something to eat. Not to mention I had blood work that needed to be done also. LUCKY ME.

Next Monday, the 23rd, i am heading to Toronto for my 18 month assessment. Yes folks 18 months, time sure does fly. My actual anniversary was on the 16th, but my assessment is about a week later. I promise to tell you all how it went. It's going to be a great weekend.

So i am going to sign off, Gripper intact and all, and I will talk to you guys again soon.

Cheers & Love
Ali

Late Updates...

Well ladies and gents, I am here today to tell you a little bit about my life during this past few months.

In May, When my port was being flushed we were having some issues with her. First of all, she loves to take in fluids, but refuses to let them be sucked up. Short and sweet of it all, she won't give me blood. That is a crucial step when flushing a Port a Cath. What needs to happen is, all the heparin that is flushed into the Port needs to be taken out, in order to lean the catheter properly. When we are unable to get blood back, it means there is probably a clot, or in my case Fibrin issue. Short definition of Port a cath and Fibrin Tissue:

PORT A CATH

In medicine, a port (or portacath) is a small medical appliance that is installed beneath the skin. A catheter connects the port to a vein. Under the skin, the port has a septumthrough which drugs can be injected and blood samples can be drawn manytimes, usually with less discomfort for the patient than a more typical"needle stick".The port is usually inserted in the upper chest, just below the clavicle or collar bone, leaving the patient's hands free


Ok so I cannot find a definition for fibrin tissue, so I will do my best to describe it. It's like a stocking growing along the end of the catheter and when you try to draw blood back from the port, it get's sucked up like a balloon does when you suck all the air out of it. Pretty much the same idea.

Surgery

Looks like i will be getting more surgery to get it removed from my body. It's going to be a weird feeling seeing as it has been a a part of who I am for so long, that to replace it or remove it would be like removing a twin. I know it's weird, but it's true.

Here is a picture of me with my port from my wedding picture were you can see it.

That round thing sticking out of my chest, that's my Port.

I am not sure when this will be, but it will be in the near future, that's a certainty.

I go for a Cath flow treatment on the 17th of august, so I'll keep you posted on that procedure.

Take care and stay healthy.

Love
Ali

Love & Marriage

This weekend, i was honroed to take pictures at the most beautiful wedding.  This wedding took 9 years to happen, and it all happend while I was behind the lens.  Kevin & Erin are two good friends of ours who deserve nothing but the best in their life.  I was completely honored when Erin & Kevin asked Derek and myself to shoot their wedding.  and what a wedding it was.  It was romantic, and stylish and the bride was so beautiful, I cried.  Yep, me the photographer, who sees weddings all the time, cried my freaking eyes out.

We took them to a great location for the shoot, that no one will ever be able to duplicate.  it's alittle gem hidden in the Cotton District of our home town.  It's quiet, full of old buildings and waterfront.  It was the first choice I had, for their special day.

I am going to post a few pictures, as they haven't seen them yet, but I want you to see the many varieties of photography that I can capture and hold close to your heart.  You are going to love these, I know I do.  So in honor of Erin & Kevin, here are a couple pictures to remember the day.  I don't think they are on my blog, so I need you all to vote for your favorite picture please.  I am having trouble deciding on which on to give them.  Can you help me out?

Thanks, here they are...

CHOICE #1

CHOICE #2

CHOICE #3

CHOICE #4

OKAY FOLKS, SEND ME YOUR THOUGHTS, 

AND I'LL SEND MORE PICS... 

AFTER THE BRIDE AND GROOM GET THEM.

THANKS
ALI

Lift-Off 2010

You are probably asking yourself, what the hell is Lift-Off.  Well let me tell you a little about the event that bring one city closer together, for a weekend of high flying adventures and Concerts to boot.

This past July 8th to the 11th, my little town of 46,000 people became the hub of entertainment.  Not only were there high flying Hot Air Balloons, but there was some awesome entertainment to celebrate the weekend.  I don't want to brag... but i will.

Can anyone tell me who this Guy is...

Tim Edwards of Crash Parallel

This guy is from a little band called Crash Parallel.  They are from Mississauga Ontario, and they are amazing. To say the least.  I was able to get some great shots of them playing at Lift-Off, that I found it hard to choose which one to pick.  I also o this shot, which is my favorite...

Crash Parallel

Lately I am obsessed with Black and White photography.  Most of you know I have my own little gig on the side that I do.  I shoot pictures of everything.  But Lift off is always a favorite, where else can a take pictures of bands, and people just having a good time, and totally enjoy the moment.  This is a time i remind myself, that 2 years ago at this time, I wouldn't have been able to go to this weekend event, as my lungs wouldn't perit me to do so.

So these guys might not be high on your radar, but I know for fact you can't deny who these guys are...

I think it's going Raine today....

Yep you guessed it, Our Lady Peace came to Cornwall, and rocked the house.  I didn't have enough time to take a thousand pictures, so I only took 950, all pretty much of Raine.  He's so yummy.  So Yummy I want to show you another one...

Raine, totally lucky shot.  And it's by far my favorite of all time.

This weekend also features the likes of Lighthouse, and Randy Bachman, bands I didn't get pictures of because of the rain.  i had a choice, take pictures in the rain, get sick... or... stay at home and admire Raine from my computer screen.  I chose the latter.

But Saturday night, was filled with electricity and excitement when this lady came on stage and made her presence known to a crowd of over 25,000... Who is she you ask, well let's find out...

Chantal Kreviazuk

I guess when you book OLP, you get his wife at half price, or vice versa.  They didn't play the same night, but what a show.  Her voice is so angelic, and inspiring.  "All I can do is love you to Pieces" has to be one of my favorites of her.  She is so inspirational, I felt like crying... but i didn't.  Not that there is anythign wrong with that.

Anyhow.  I have taken up enough of your time.  I will show you some balloons from the weekend, and maybe next year, we'll see you out here.

Ciao and enjoy the pictures of the Balloons.

Love lot's,
Ali

Launch field in St. Andrews Ontario

St. Andrews launch field

Love Love Love

To those of you who read this, you know I love my freinds and family very much.  I have met many new friends on my life changes.  My new lungs brought me closer to my sisters, and the people I didn't think were really close to me, became very involved in my healing process.

My best friend Rebecca and her husband Chris, have been blessed with the most beautiful little angel.  her name is Paige, and she is 10 months old, 11 months on the 24th of July.  I had the greatest pleasure of photographing this amazing little girl and her mother when I visited them this past weekend.  Rebecca was the first one of my friends to vist me while I was in Toronto.  She came by when I was on the transplant floor, 10th floor, of the Toronto general Hospital.  Not only did she visit me, but she brought her faith with her, and it made me stronger.

Getting in touch with my spiritual self, made life so much easier to cope with after the fact.  It was rather difficult to believe, that God would do this to anyone, and hurt them in any way.  But I realized it's not God that did this to me, he chose me, because he knows that I can help make a difference in the lives of others who suffer from Cystic Fibrosis.  To show them that it's not all bad, that Cf is a blessing in disguise.  Cystic Fibrosis, will not take over my life, I have complete control now.  I have faith in God and Jesus to help guide me through things I didn't think I could handle.  You know what they say, God doesn't throw anything at you that you cannot handle.

I am telling you this because Rebecca and Chris have helped me realize that Jesus has died for my sins, and God will be there to greet me, when that time comes.  I can only hope I have made him proud.  Let's start by showing you some pictures of little Paige and Rebecca.  2 of God's wonderful master pieces.

Paige Deborah, 10 months and 9 days July 3rd

Paige & Mum on July 3rd

Children are what make the world go round, they laugh, the play, they cry, the want you to love them unconditionally.  and we do.  With a face like this, how can you not.

Much love to all, and peace and prayers to the ones who want and need it.

Kisses & Prayers
Ali