As I sit here and type this update, I am filled with mixed emotions. In my last post, I told you about my donor specific antibodies, and the treatments that I went through for them. Since then, I have had a couple of follow up appointments, to see if they worked. I got some good, and some bad news.
At the first appointment after my treatments, I had various tests done. My lung functions had dropped significantly since before antibody treatment. But my x-ray and blood work looked good, and I felt okay. Also, my bronchoscopy showed no acute rejection. So we weren’t sure if I had a drop due to reactions from the treatments, or if I had chronic rejection, caused by the antibodies. Chronic and antibody mediated rejection can not be detected in a bronchoscopy. So we would only know with time. My test results later showed that a portion of my antibodies were gone, but not all of them. However, I was still having IVIG infusions once a month, in hopes that that would knock out the rest of them.
After that first appointment, I seemed to have a couple of rough patches with coughing, and not feeling well. I did a round of IV antibiotics, with some relief, only to end up sick again, shortly after. I was getting short of breath much easier, and losing weight. I had a doctors appointment with my CF specialist during this time. My lung functions had taken another significant drop. I was admitted to the hospital the next day, to try to find reasons, and solutions. We concluded that I now have Antibody mediated or chronic rejection. This type of rejection can be slowed down, and haulted, but not cured. I spent a week in the hospital. I had more antibiotics, and another new medicine, to try and treat the rejection. The med that I had works on the immune system. It reduces it dramatically, and attacks certain parts of it, in an effort to get rid of the antibodies that are causing the rejection. Again, this is not a cure, but a way to hopefully hault things for a while, and keep me from getting worse. I finished that Med, the week before Christmas. I have follow ups with both my CF doc, and transplant doc this month. We will see if the new treatment did it’s job or not. I have felt better in terms of my breathing. I’m not as short of breath as before, and my coughing decreased. I am still struggling very hard with my weight though.
I am scheduled to see my transplant Doc, the week of the 21st this month. while I am there, we will be talking about a second double lung transplant, and going through evaluation testing all week, to see where I am at in that aspect. I certainly didn’t want to be thinking about this, this soon. It’s been frustrating and nerve-racking. But here I am, facing this battle the best I can.
We are kicking the fundraising back up, into full gear. We are now facing a second lung transplant, on top of the usual medical costs that my first transplant brings. I can honestly say that I would not have been able to afford, or get through my first transplant, and aftercare without the generous and selfless donations, and support from you all. I am forever grateful for your outpouring of love.
I just want to continue to raise and love my son, make memories with my husband, and be with the ones I love for as long as possible. I have accomplished so much since my first transplant, but I still have SO much more to do in this life.
We are asking that you help spread the word. Help us reach our funding goals. We have an easy donate tab right on this page. There is no faster and more convenient way than that. We are also established at all “Roopers” locations in Lewiston, Auburn, and even oxford, for bottle drive donations. Just tell them that you want your return to go to the Second Chances Foundation. We will be doing event fundraisers as well. The easiest way to see and access those, is through our facebook page. www.facebook.com/2ndchancesfoundation
As always, I am sending my love to all of you. ~Aimee~