Minnesota and more
Hello everyone! Happy nearly spring! I figured it’s about time I get off my duff and get you an update on health things. I know several of you have been waiting patiently. Thank you.
Frankly, it’s taken me some time to figure out what to type. A lot has happened in the last six months; and it’s hard to figure out which parts people will want to hear about. CF is pretty ruthless; but I know people want good stuff too. And I cannot survive this without a little good stuff as well.
So first thing’s first: the biggest news. I was thinking, “What can I do to help myself?” After all, so much is left in fate’s hands right now…the progression of CF, the call for transplant. And one day in October, I figured it out; “I could get double-listed!” What this means is to get on two transplant lists to increase my odds of getting a phone call.
Just like Denver, it’s proving to be quite a process. Long story short, Craig and I just went to the second center this past week – The University of Minnesota, Fairview. This is a remarkable hospital. They did the first double-lung transplant in the 80’s, and have a long, long list of “world’s first” credits to their name. They have a very large Cystic Fibrosis program, and extensive knowledge and protocol setting treatments for the CF community.
I could know as early as March 22 as to whether I am on their list, or if they want more testing done from Omaha (which is what Denver did). So I will get the word out to you all when I find out.
I’m not going to lie; the progression of CF is difficult. The big thing, which I don’t think many people know, is that it can affect almost every system in the body – no joke – not just the lungs. So I won’t bore you with my personal issues, but the last six months have been full of side issues on top of the progression on the lungs.
What I will tell you for your education is this; here’s what CF can do…besides destroy lungs…malnutrition, ulcers, gall stones, kidney stones, anxiety, depression, liver disease, diabetes, make you sterile (especially men), sinus blockages and polyps, severe fatigue, weak bones…oh and that’s just the stuff I can think of off the top of my head. It affects the lymphatic system, digestive, respiratory, skeleton...the list goes on. One would swear, if CF could have a personality, it’d be hypochondriac! So…I bet you all learned at least one thing from that paragraph.
I continue to go with the flow. I am tired a lot. But I am bound and determined. I go to work everyday, and it keeps me mentally healthy. I love my job! I come home to Craig and the kitties and they help with mental health at home. In the meantime, we just hope and pray and positive juju and all that good stuff for lungs everyday.
Thanks for reading this update; of course I have to throw in the reminder that you can donate to my campaign: www.cotaforlaram.com. Every little bit helps.
And another update will go out when we hear on the Minnesota listing.
Thank you all for your love and support,