Monday, April 27, 2015

Cystic Fibrosis Walk 2015

On April 11, Ashley, Thomas and I participated in the Great Strides Walk to benefit the Cystic Fibrosis Foundation. We wore our "Think Pink Lungs" t-shirts in support of our friend, Tara, who is on the transplant list for new lungs. This is the 8th year that we have participated in this walk and raised money for cystic fibrosis research. This year we were also walking to raise awareness for organ donation.

This year we had 27 AMAZING donors. Here is a list:
http://someonechristina.blogspot.com/2015/02/thank-you-for-your-cf-donation-2015.html

If you would still like to donate, that would be great! Here's more information:
http://someonechristina.blogspot.com/2015/02/annual-fundraising-for-cf-research-2015.html

I am so grateful for each and every donation. Thank you!

Below are some pictures from the walk (if you click on them they will enlarge). Please keep Tara in your thoughts ... please Think Pink Lungs!







Friday, March 27, 2015

2015 Cystic fibrosis fundraising update from 3-26-2015

Hello to my friends and family,

I wanted to give you a quick update on my fund raising to help find a cure for cystic fibrosis - it's my final general message for the year:

1) Thank you very much to everyone that has donated so far! We have 18 donations and I am very appreciative of each one! Here is a list of donors:

2) Please consider making a donation to either the Tara Telford Fund at UC Davis or the Cystic Fibrosis Foundation. It takes a few minutes and every $5 or $10 is appreciated. Donation information can be found  here:
 
3) This is wonderful news ... Tara has officially been listed at Stanford for a double lung transplant - yippee!! Hopefully within the next few months to a year she will have new lungs. Think pink lungs! A double lung transplant has many risks, but right now it is Tara's best bet at getting more years of life. It does not cure her CF. See below for a description of what her life will be like after the transplant. It is still important to contribute to finding a cure for CF.

4) Tara has created a t-shirt so everyone can share the #TeamTelford spirit while she waits for her call for new lungs. They have set up a site to order t-shirts to show support for Tara and hopefully encourage a discussion about organ donation. The last day to buy t-shirts is Wednesday, March 29, 2015 and they will be delivered by the end of April. I know that few of you "know" Tara, but in case you want to order one: http://teespring.com/teamtelford

5) Organ donation saves lives! Please consider becoming an organ donor and make sure that your family knows (and is ready to abide by) your wishes.

6) Ashley and Thomas turned 8 and 6, respectively, in the past 2 weeks (pictures attached from each of their birthdays). I am so grateful that they are alive and healthy - it's a blessing! If you are healthy, and I hope you are, please respect and honor your body.
 
 
With appreciation,
Christina

How the transplant will affect the CF, we still need a cure - excerpted from an email from Tara
The new lungs will never have CF. 

Really I am trading one disease for another. I will be on a ton of medications to lower my immune system so that I don’t reject the lungs. There are two types of rejection, acute and chronic. Acute rejection can sometimes be treated and reversed. I have a friend that was transplanted 10 months ago (it is actually her second double lung transplant because the first set lasted 5 years before she got chronic rejection and nearly died again). Anyway, her second set is rapidly declining. She’s down to 32% lung function and she has acute rejection. The treatments at this point need to be aggressive. She is in the hospital and hoping to get what they call rATG, where the r stands for rabbit and basically it is rabbit blood that will restore T-cells, if I am remembering correctly. This treatment has restored and halted rejection for some of my friends, but I’m not sure they dropped that low before the treatment was started. She’s dropping fast. 

Chronic rejection is difficult if not impossible to treat and will lead to death. I am not positive but I think the 50% survival rate from Stanford is 5 years. So half of the lung transplants they do are patients that are living beyond 5 years. The others might go on to have a second transplant (very common these days) or they die waiting for a second set, or a second set is not a viable option. 

I do know many many people that have had a double lung transplant and they have survived a decade or more. This is encouraging and this is what I am hoping for! 

The rest of my body remains to have CF and all it’s complications. Anything that secretes mucus will still have thick sticky mucus, like sinuses, pancreas, intestines, even my cervix. In addition to being careful about avoiding rejection just because my body won’t accept the lungs, there are many things that can cause rejection just because I have diseases related to CF. For example, GERD, or gastro esophageal reflux disease. Or acid reflux. Aspirating reflux into the new lungs can lead to rejection, that is why many CF patients are on high doses of acid blockers like Nexium. There are also a couple of surgeries that tighten the sphincter between the throat and the stomach to reduce or eliminate any acid from being refluxed and then aspirated into the new lungs. Another worry is the CF infected sinuses will drip into the new lungs and infect them and lead to rejection as well. That’s why sinus surgery is common after transplant as well. I had my first and only surgery in 2006 and so far it looks like, based on my CTs, that I don’t need another one yet. 

Other issues of course are airborne illnesses and particles. The lungs are the only organ that is transplanted and completely exposed to everything in the air. If I catch a cold virus I will have to go into the hospital for a 5 day or so treatment of high dose steroids to reduce the chance of rejection. Rejection is a huge huge issue post transplant, but some people never experience it. 

Another issue post transplant is cancer. Specifically colon cancer, related to CF and taking all the immunosuppressant drugs and skin cancer, melanoma to be specific. So I definitely cannot be out in the sun at all without clothing or sunscreen protection (clothing preferred). Melanoma rates soar for lung transplant patients for some reason. And the colon cancer thing is pretty newly discovered as the older people, such as myself at 39, with diseased intestines, live with the immunosuppressant drugs, colon cancer is becoming a bigger risk just because of how long my colon has lived with CF. 

The hope is that I will be able to pop about 50 pills a day and get on with my life and be active and full of energy. The reality could be very different from that. But as I am heading toward the end of my life with CF lungs, this is the only treatment available. I am willing to take the risks! 




Tuesday, February 24, 2015

Annual Fundraising for CF Research - 2015

2016 Fundraising

My friend, Tara, has cystic fibrosis (“CF”) and had a double lung transplant on January 1. So, as I do every year, today I am writing to you about finding a cure for cystic fibrosis ("CF"). 
CF is a hereditary disorder that causes the production of abnormally thick mucous that leads to blockage and severe infection of the lungs. It also affects the pancreas and stops natural enzymes from helping the body break down food and absorb vital nutrients. Many young adults with cystic fibrosis finish college or find jobs. Lung disease eventually worsens to the point where the person is disabled. Today, the average life span for people with CF who live to adulthood is about 37 years.
I raise money for this cause because of Tara. She was in the hospital for all of December, waiting for new lungs. I saw her a few days before her transplant and I asked her if she was scared. She said, "No, all of my friends have either died or had a transplant. It's my only option." She expected to be out of the hospital in 2 weeks and then would need to stay near Stanford for 3 months to get medication dosages figured out. Two months after the surgery, she is still in the hospital. But she is always positive and has an army of people praying for her and supporting her. Tara is a good person - she truly has a good heart - she is an amazing mom to her twins and does all she can for her family and friends while still managing her CF. She inspires me to appreciate life, treasure small moments, and use my body .... because I can. This will be a great year for her!
Today, I am asking you to do a few things:
1) Consider becoming an organ donor. You can save lives. Tara has already connected with her donor's family. Her donor was 29 years old and had a young daughter. We are thankful to her donor for giving Tara more years of life.
2) If you are healthy, and I hope you are, make good choices about your body. Some health problems, like CF, are out of our control. But many health problems can be avoided. We owe it to those who can't control their health to appreciate ours.
3) Celebrate birthdays! It's not a given that we'll be around next year. Celebrate the fact that you were born, and celebrate the fact that you are able to enjoy life for one more year.
4) Please consider making a donation to the Tara K Telford Graduate Student Award for Cystic Fibrosis Research at UC Davis (this is where I donate every year). You can do this online from the following link. Please let me know that you have donated to this fund so I can properly thank you. I will not receive a notification that you donated.     
or
Consider donating to the Cystic Fibrosis Foundation through our Great Strides walk (our 9th year participating - will take place in Walnut Creek on April 30 at 10am) using this link (I will get a notification). You can also sign up to walk with us from this link. 
Tara is extremely appreciative of the support that she has received from my friends and family in the past. Last year she wrote a message to my donors about her health - she can’t update it right now, but I wanted to include it anyway:
My lung function seems stable at 25% but everything I do is difficult. One of the hardest things to do every day is just get dressed. It's like a work out. My heart rate soars into the 150's and I get really out of breath, just changing my clothes and taking a shower. I am really looking forward to a new life with new lungs, if the stars align and that is what is in store for me this year. The wait time for lungs could be up to two years, so I'm really hoping it happens faster than that for me. I have to be very careful not to catch any viruses, as that can land me in the hospital with a lung infection and the list of IV antibiotics I can use is getting smaller and smaller and the complications for the antibiotics vary from becoming very anemic and possibly needing a blood transfusion to flaring up my kidney disease, all of these things cause a temporary stop of the antibiotics while my body recovers. So I have to spend all of my "tune ups" in the hospital now because I need to be watched very close and have my blood drawn every day to watch for signs of things going wrong. 
Thank you so much for all your fundraising efforts over the years. You have been a steady source of motivation for me to keep going and keep fundraising. I hope you know just how much I appreciate all your efforts and appreciate all your family and friends that so unselfishly give to my cause year after year. Thank you!
After the walk I'll send our donors some pictures of us walking, thanks to your support. For donations of at least $100 Ashley and/or Thomas will draw you a picture and I will send it to you. You will also be added to my list of donors: 
http://someonechristina.blogspot.com/2016/02/thank-you-for-your-cf-donation-2016.html
Post with list of last year's donors
http://someonechristina.blogspot.com/2015/02/thank-you-for-your-cf-donation-2015.html
More information about CF

**********
2015 Fundraising

Hello Family and Friends,

As I do every year around this time, today I am writing to you about finding a cure for cystic fibrosis ("CF"). CF is a hereditary disorder that causes the production of abnormally thick mucous that leads to blockage and severe infection of the lungs. It also affects the pancreas and stops natural enzymes from helping the body break down food and absorb vital nutrients. Today, I am asking you to do 2 things:
1) If you are healthy, and I hope you are, make good decisions about your body. Exercise, eat right, partake in "treats" in moderation, get rest, and be grateful that you can control many aspects of your health. Some health problems, like CF, are out of our control. But so many health problems can be avoided. I believe we owe it to those who can't control their health to appreciate ours.

2) Please consider making a donation to the Tara K Telford Graduate Student Award for Cystic Fibrosis Research at UC Davis (this is where I donate every year). You can do this online from the following link. Please let me know that you have donated to this fund so I can properly thank you. I will not receive a notification that you donated.      https://give.ucdavis.edu/GRAD/150006
or
Consider donating to the Cystic Fibrosis Foundation through our Great Strides walk (our 8th year participating - will take place in Walnut Creek on April 11 at 10am) using this link (I will get a notification). You can also sign up to walk with us from this link.
My friend, Tara, is extremely appreciative of the support that she has received from my friends and family in the past. Here is an update from her on her health:
Right now I have completed all my testing for pre-transplant at Stanford University Hospital for a double lung transplant. I'm waiting for the results of two tests to come through and be sent to Stanford. Then if they want to put me on the waiting list for a double lung transplant they will take my case to the team of surgeons and pre-transplant group, and they will decide if I'm a candidate for transplant at Stanford. My lung function seems stable at 25% but everything I do is difficult. One of the hardest things to do every day is just get dressed. It's like a work out. My heart rate soars into the 150's and I get really out of breath, just changing my clothes and taking a shower. I am really looking forward to a new life with new lungs, if the stars align and that is what is in store for me this year. The wait time for lungs could be up to two years, so I'm really hoping it happens faster than that for me. I have to be very careful not to catch any viruses, as that can land me in the hospital with a lung infection and the list of IV antibiotics I can use is getting smaller and smaller and the complications for the antibiotics vary from becoming very anemic and possibly needing a blood transfusion to flaring up my kidney disease, all of these things cause a temporary stop of the antibiotics while my body recovers. So I have to spend all of my "tune ups" in the hospital now because I need to be watched very close and have my blood drawn every day to watch for signs of things going wrong. 


Thank you so much for all your fundraising efforts over the years. You have been a steady source of motivation for me to keep going and keep fundraising. I hope you know just how much I appreciate all your efforts and appreciate all your family and friends that so unselfishly give to my cause year after year. Thank you!
After the walk I'll send our donors some pictures of us walking, thanks to your support. For donations of at least $100 Ashley and/or Thomas will draw you a picture and I will send it to you. You will also be added to my list of donors: 
http://someonechristina.blogspot.com/2015/02/thank-you-for-your-cf-donation-2015.html

Christina (pictures of the kids are attached)
PS - If I am, or have been, the room mom for one of your classes at Gingerbread or Walnut Grove, I did not send this to our class distribution list - only to those of you I have had more contact with.

Post with list of last year's donors

Monday, February 23, 2015

Thank you for your CF donation - 2015


2015 Donors

Thank you to the following individuals for making donations to either the Tara K Telford Graduate Student Award at UC Davis or the Cystic Fibrosis Great Strides event. Your generosity is appreciated!

If you make a donation to Tara's fund (and I hope you do - that is where I donate every year), please let me know so I can properly thank you - I won't get a notification.

1) Audrey and Bryan Gillette - Tara Telford Fund
2) Vivian Hui - CFF
3) Kym Peck - CFF
4) Bill and Sharon McKee - Tara Telford Fund
5) Bhaskar and Veera Mantha - Tara Telford Fund
6) Jan and Gene Traficante - CFF
7) Bill and Maggie Foley - Tara Telford Fund
8) Shannon DeCola - Tara Telford Fund
9) Corey and Kelly McIntyre (a new dad and an incredible overachiever) - Tara Telford Fund and CFF
10) Bob and Judy Robichaud - CFF
11) Bruce and Jean Kelley - CFF
12) Brad and Kristin Maryman - Tara Telford Fund
13) Olivia Sanwong - CFF (and is submitting for company match)
14) Gloria Nystrom (aka "Gigi" ... aka "AWESOME) - Tara Telford Fund
15) Lauren and Tom Mensch - Tara Telford Fund (and is submitting for company match)
16) Margo and Jonathan Clarke - CFF
17) Joy and Jared Goor - Tara Telford Fund
18) Hassan and Arlene Mahmoud - Tara Telford Fund
19) Jennifer and Brady Skinner - CFF
20) Christine and Billy Butler - CFF
21) Julie and Joe Pierron - CFF
22) Erin Haley - CFF
23) Suguna Vepa - Tara Telford Fund
24) Christina and Srikant Mantha - Tara Telford Fund
25) Hal and Linda Nystrom - Tara Telford Fund
26) Annie Chang - Tara Telford Fund
27) Michelle Ford and Fran Coen - Tara Telford Fund
28) Betsy and Jamison Cummings - Tara Telford Fund

Cystic Fibrosis Research Fundraising 2014

Thank you to the following individuals for making donations to either the Cystic Fibrosis Great Strides event or the Tara K Telford Graduate Student Award at UC Davis in 2014. Your generosity is appreciated!

1) Katie Loughnot - Tara Telford Fund
2) Nurse Kristin Perkins - CFF
3) Audrey Gillette - Tara Telford Fund
4) Olivia Sanwong-Handerson - CFF
5) Kim Fillmore - Tara Telford Fund
6) Auntie Jan Traficante - CFF
7) Jean Kelley - CFF
8) Bill and Maggie Foley - Tara Telford Fund
9) Mike Jacob - Tara Telford Fund
10) Bhaskar and Veera Mantha - Tara Telford Fund
11) John and Janine Loconsolo - Tara Telford Fund
12) Corey McIntyre - CFF
13) Erin Haley - CFF
14) Matt Richert - Tara Telford Fund
15) Tina and Srikant - Tara Telford Fund

If you would still like to donate, here's some information:


There are 2 ways that you can help support vital CF research. No donation is too small.
1) Donate to the Tara K Telford Graduate Student Award for Cystic Fibrosis Research at UC Davis (this is where I donate every year). You can do this online. Go to the website below. For "Gift Designation" choose "Other fund (please describe)." In the "Description" box enter "Tara K. Telford Graduate Student Award." Please let me know that you have donated to this fund so I can properly thank you. I will not receive a notification that you donated. Alternatively, you can send a check in using the second link.
or
2) Donate to the Cystic Fibrosis Foundation through our Great Strides walk (our 7th year participating - will take place in Walnut Creek on April 12 at 9am) using this link (I will get a notification). You can also sign up to walk with us from this link.
                       http://fightcf.cff.org/site/TR/GreatStrides/98_Northern_California_San_Francisco?px=1388364&pg=personal&fr_id=1942

After the walk I'll send our donors some pictures of us walking, thanks to your support. For donations of at least $100 Ashley and/or Thomas will draw you a picture and I will send it to you.

Cystic Fibrosis Walk 2019

On Sunday, May 19, 2019 we participated in our 12th annual Great Strides walk to benefit Cystic Fibrosis research, in San Jose. The walk is ...