Climbing Kilimanjaro for CF South Africa!

 

 

A brave lade called Lara Hinrichsen is climbing Mount Kilimanjaro in order to raise funds for the SA Cystic Fibrosis Trust. See message from her below. Please donate if you can! http://www.backabuddy.co.za/champion/project/walking-4-air-

 

 

Hi All,
In just 10 days time I leave to face the challange of climbing Kilimanjaro in memory of my best friend, a CFer, who passed away in 1998. I've raised R12 700.93 so far for Cystic Fibrosis patients in South Africa.
Just R6640.07 to reach my fundraising target.
If you would like to make a donation please take the time to visit my fundraising page www.backabuddy.co.za and type in WALKING 4 AI...R in the "Find A Friend" box. Donations are accepted from all countries and it's a secure website. All funds raised goes directly to SACFt to support those couragously living with CF and to fund research in order to find a cure. If you would like to know even more about what I'm doing and why, please visit my blog on http://walking4air.wordpress.com/ which I started in order to chronicle my journey to Kilimanjaro.
Every little bit counts and is hugely appreciated!

53 months

Had a good week. Tuesday I went to gym, Wednesday I was domestic, going to pharmacy buying groceries, doing laundry etc! Thursday evening a good friend of mine from PE landed in JHB (she's en route to Dubai and Thailand) so we went out for supper at Gourmet Garage with Andrew and Brendan. It was sooo nice catching up. Only problem was that we had supper pretty late (and it was a BIG supper!) So when we finally got to bed I couldn't fall asleep and had some reflux :-( Felt like food kept on pushing up as soon as I lay down. It was so annoying and worrying that I ended up not sleeping at all that night :-( Friday night we went out again but at least this time I'd learned my lesson and had a small meal, and much earlier that the previous night. Didn't have any problems again so at least now I know.

This morning I made us bacon & french toast with maple syrup for breakfast before taking Ditha to the airport. Afterwards I went to a transplant network meeting which was really nice and then gym. So all in all a good weekend so far too! Having lunch at my folks' place tomorrow and before that I'm helping out at Gauteng Transplant Sports' first ever Golf Day! Looking forward to it!

First check-up after hospitalisation

Had my check-up today! Thank goodness because I've been counting the days leading up to this! All good news at least. FEV1% was 102% and FVC 109% or something but the other nrs were pretty impressive, so it's a new base-line best for me. YAY!!!! Of course I'm nervous that the nrs will drop once I'm off the steroids, but for now I'll take this! Gym's coming along well again. Went 4 times in last week and back where I was before I got sick. So life is pretty much back to normal. Just have to book biopsy now for middle of next month sometime. Then I'll figuratively breathe easier as well!

CF Chef Program

See below for exciting opportunity by the makers of Creon! Abbot (South Africa) also contributed towards my sponsorship for the World Transplant Games in Sweden last year...

Abbott Expands CFChef Program in 2012 for People Affected by Cystic Fibrosis
Abbott Press Release
June 12, 2012

CFChef Website Features New Nutrition Topics and a Consumer Survey to Generate Cystic Fibrosis Community Input

Abbott today announced the launch of four themed recipe contests as a part of the CFChef program, an online nutrition resource developed to address the specific nutritional needs of people living with cystic fibrosis (CF). The CFChef program will host “Cookout” and “Back-to-School” recipe contests through June 21, 2012 as well as the “Winter Holiday” and “Spring Holiday 2013” recipe contests later in the year. Individuals touched by CF are invited to submit original recipes for a CF diet or CF adaptations of traditional meals online at www.Chef4CF.com.  

"Providing nutritionally balanced, CF-friendly recipe options through the CFChef program helps patients learn more about the importance of nutrition," said Jim Hynd, divisional vice president, Cardiovascular Care, Metabolics and GI Care. "For more than 20 years, Abbott has been committed to supporting the unique needs of CF patients by providing programs like CFChef that help to inform the patient, their family and friends."

Cystic fibrosis is an inherited chronic disease that affects the lungs and digestive systems of approximately 30,000 children and adults in the United States. More than 70 percent of people with CF are diagnosed by age two. In patients with CF, a thick, sticky mucus is produced in certain organs throughout the body, most commonly the lungs and digestive system, including the pancreas. Many people living with CF are unable to properly digest food because of the thick mucus in the digestive system.

Additionally, the pancreas does not produce enough digestive pancreatic enzymes in these patients, causing malabsorption of the calories and nutrients (vitamins and minerals) in food. To achieve proper nutrition, individuals with CF need to consume more calories than a person without the disease.

As a part of this year’s initiative, the CFChef website has been updated to provide instructions on how to manage energy imbalances through diet, as well as meal preparation tips to help meet the nutritional requirements of both CF and non-CF family members. In addition, the program now includes an online survey, which will be available to the CF community at www.Chef4CF.com until July 20, 2012. This survey will allow those touched by CF to provide valuable input regarding the overall program and nutrition guide content for future website updates and additions.

"With its growing recipe database and the introduction of an interactive survey, the CFChef website continues to be an increasingly useful tool for the CF community," said Suzanne Michel, a registered dietitian at a leading children's CF center in Philadelphia." Chef4CF.com now provides a comprehensive shopping list, useful cooking tips, and shows CF patients and their families it’s possible to eat healthy and cook successfully, even with complex dietary requirements and a busy schedule."

About CFChef

CFChef is an Abbott-sponsored online nutrition resource developed to help people living with cystic fibrosis (CF) and their families better understand the unique nutritional needs of people living with the disease. In addition to serving as an educational resource, CFChef is a place where families, friends and caregivers of people with CF can share recipes and get updated nutrition tips and guidance. Visit CFChef at www.Chef4CF.com.

About Cystic Fibrosis

Cystic fibrosis is an inherited chronic disease that affects the lungs and digestive systems of approximately 30,000 children and adults in the United States. The majority of people living with CF are unable to properly digest food due to lack of digestive pancreatic enzymes, and good nutrition is extremely important for growth. With more than 70 percent of people with CF diagnosed by age two, nutritional information for both children and adults can aid in proper growth and development.

About Abbott

Abbott is a global, broad-based health care company devoted to the discovery, development, manufacture and marketing of pharmaceuticals and medical products, including nutritionals, devices and diagnostics. The company employs approximately 91,000 people and markets its products in more than 130 countries.

Abbott's news releases and other information are available on the company's website at www.abbott.com.

Kitty Love

Testing a new app on my phone...let's see if it works!  pic was taken last night... the kitties were getting cold and loving their mommy very much!

Tricia

I doubt if there's anyone who follows this blog that doesn't know Nate's blog, but just in case... Tricia had her double lung transplant 3 months or so after I had mine. She also had a baby while on the transplant list. Their story has been filled with miracles and love and I've been following it for about 4 and a half years.

Yesterday Nate posted that she's basically got chronic rejection and her lung function is down to pre transplant and all sorts of horrible things. Obviously don't the details of how this happened etc but really shocked and scared for them. I don't know how re-transplants work there but as far as I know her centre has done it but don't know the criteria needed etc. Pray that all will work out for them yet again. Can't think of a more deserving family.

Happy Birthday to my mom!

Yesterday was my mom's birthday! We had a lovely long lunch at their place.Baie lief vir mamma!

*COLD WEATHER*

BBBRRRR it's nice and cold this weekend! Right now it's mid morning and 4 degrees C outside. Nice and warm inside at least.

I've been back at work since Thursday. So glad to HAVE a job. I know a lot of post tx'ers who don't work, either because they can't find a job or because they still think they're too "sick" or they don't know what carreer to go into etc. Well I felt lucky to have a job to go back to after being sick this week. You feel so unproductive and a bit useless waking up in the morning and not having anywhere to go or anything to do. The only thing that made it fine was knowing I had to rest and gain strength etc and that it's just temporary. Going back also helped get my mind off all the scary rejection-thoughts!

Physically I'm feeling good. Energy levels up again, lungs FEEL normal (but then again I didn't feel the drop in lung func) and nose almost dried up properly. Going for check-up again next Monday the 18th. Hoping to go back to gym before then too at least one or twice. Very nervous for that check-up but also anxious to know all's well. Will then also schedule follow up biopsy. Eeeekkkkk...

HOME

Am HOME thank goodness!!!!! Ugh hospitals suck. And uncertainty sucks more! Not feeling completely "out of the woods" but lung function was great today (FEV1% = 103%) and all phlemy noises gone. Have to go for follow-up lung function in 2 weeks time and another biopsy in 4-6 weeks time. However right now feeling too tired to stress about that. Steroids made my brain all fuzzy and feeling zombie-like after a few nights of almost no sleep. Can't wait for bedtime :-) Having nice steak and mushroom for supper (have lost 2kg... didn't eat much in hosp because everything tasted wierd. Hopefully the steak and mushroom tonight taste normal!). Back to work on Thursday so 2 days of rest ahead... heaven!!!

some rejections :-(

What a CRAP week... So the verdict is some early spotted acute rejection. But back to Wednesday... Barium Swallow test was gross. Had to drink what tasted like paint-cement-chalk mixture. Wanted to throw up. They then x-ray you while drinking it. Standing up and tilted. Test results showed no serious reflux but might still have some. Bloods were fine. Then bronch was done on Thursday. Was not bad at all. Was home by Thursday early evening. Went to work on Friday (although did feel a bit out-of-it but kept my mind busy.) At about 15h45 Dr Williams called saying he managed to get results back early and it's some bit of rejection :-( Luckily caught early. Finished up work, drove home packed my stuff and it was off to hosp.

Timing was perfect because Dr W was busy with his ward rounds when I got there and saw him immediately. He also put drip in for me and said not to freak out because they're just being prudent and all should be fine etc etc...Of course until I do follow up lung function on Monday and lung func back to normal I won't feel completely at rest. Getting treated with 1,000 mg of Solumedrol twice a day (and some antibiotics) for 3 days... depending on Monday's results. Going to look like puffer fish soon! Hospital hasn't been too bad so far. Seeing that last night makes night 18 spent in hosp post transplant like EVER... I'm not really used to it. Been having lots of visitors and keeping busy!

So... hope to be updating with with good news on Monday. Please pray for good results!!!