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/teamtelford5) 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!
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