It’s Aimee! I’m back for a long overdue update. I truly apologize, as I often end up updating our Facebook page, more so than this one.
I’m always juggling multiple plates, and often miss a few. But I get it all together once in a while.
I am now 4 years and 4 months post transplant. Incredible, I know! I am always in awe of how far I’ve come.
I’ve kept busy as usual. Raising a son on the Autism spectrum, taking care of my health, daily demands of home ownership, being a good wife, friend, family member, community contributor, etc.
the past year has brought some bumps in the road. I’ve dealt with reoccurring infection in my sinuses and lungs. I’ve been off and on Antibiotics for treatment. some pill form, some IV form. I’ve had a couple of hospital stays as well. Back in April of this year, I dealt with Flu and Pneumonia at the same time. I had a hospital stay for that, with lots of meds. It was pretty rough for a week or so, but I made it through.
Last Month, I spent 3 weeks in the Hospital, in North Carolina (where I had my transplant). I recently tested positive for something called Donor Specific Antibodies (DSA), and was getting aggressive treatments for it. “DSA” can be hard to understand, but it is basically my body recognizing that I have “foreign” cells (from my donor) living in me. If left untreated, it can lead to organ rejection, and major complications.
I went through multiple tests, to make sure I was not going into rejection, or having other complications from this new finding. My lung function tests were slightly decreased, my CT scan looked funky, and I had a bit of a cough. I also had an enlarged lymph node in my neck. A bronchoscopy showed that there was no rejection in my lungs. Afterward, a PET scan ruled out any chance of Cancer in my lymph node.
I began antibiotics and steroids as a precaution, until my test results came back. I then went through process of plasmapherisis therapy, to begin to treat the DSA in my body. Plasmapherisis is the process of filtering blood out of the body, taking out the unwanted plasma (containing the DSA), and replacing it with healthy plasma. My body seemed to handle it well.
There are 3 parts to treating the antibodies. Plasmapherisis, and two different Chemo style IV drugs. the Chemo drugs are used to treat my DSA only, I do not have cancer. I have finished my Pherisis, and one of the Chemo meds recently. I only have one Chemo med to finish up at this point. I’ve been getting the IV’s at the local hospital’s infusion center. I’ve had a few side effects from the meds so far, mostly muscle aches and tension headaches. but I’ve been dealing with them.
I will have to go Back to NC, for a check up, a month after my treatment is done. They will test to see if the DSA is gone, and if my lungs are looking better. We are hoping all will look good. If not, we will come up with a plan of action from there. In the meantime, I will have monthly IVIG infusions, at the local hospital. This is the last step in the DSA treatment plan. I will continue to have this monthly, until I have two negative DSA tests in a row.
I am hopeful that this all works out, and that the treatments do their job. Aside from all of this commotion, I have been in generally good spirits. I try to enjoy life, no matter what is going on. I may be tired, and slightly overwhelmed some days, but God made me strong enough to withstand the storm, and is always seeing me through it.
The other downside to all these health concerns, is that I have to go to NC much more frequently now. They need to do tests and check-ups on an often basis, to make sure we stay on top of things, and prevent me from having rejection, and other potential life threatening issues.
Between travel, hospital and doctor’s office bills, med costs, and so on, It adds up fast. We are by no means rich, and we do what we can, but we are only capable of so much. Surprisingly, it is not the physical struggle, but the financial one, that is the hardest part of this journey. I hate having to rely on others, in all aspects. But have often been given no choice. I cherish every single moment that I get here on this earth. And I cherish all those who help Me on my Journey!
We continue to try to raise funds, to keep up with the cost of my healthcare. We are always accepting of, and are humble to donations, of any amount. I can not stress enough, how grateful I am to all who play a role in these efforts. You are my heroes, and my angels!
I will end this post with a huge Hug, and Love to all who are reading. I hope to be better about updating soon.