Finally, Some Answers

What does FIGHTER mean to you? To most its means someone who fights, a soldier, boxer. And to some it means A person who figuratively fights. Or a person who is determined to persevere or not give up.

To me the #1 Fighter I have ever met is my beautiful wife Liz. And she is a person who perseveres and does not give up. Even with all of the crap she has had to endure in her life, she keeps her head up and pushes forward. She is a great mother to McKinley and such an example to me. 

As most of you know she has had years of health issues and has been in and out of the Hospital with-out any sign of relief. Well recently we found the source for all of her pain and problems and its called Hereditary Angioedema.

 

 Its a very rare autosomal dominantly inherited blood disorder that causes episodic attacks of swelling that may affect the face, extremities, genitals, gastrointestinal tract and upper airways. What it mainly does is make blood vessels leaky, allowing fluid to build up in the tissue. Most of the time it affects: Extremities (hands, feet, arms, legs) Intestines (abdomen) Face, Throat, and Genitals.

And of course Liz has the rarest one. Type III: In type III HAE, C1-INH lab tests are normal, but the person has symptoms of HAE. This is an extremely rare type, and is not entirely understood. Type III HAE occurs most often in women. McKinley also has a 50% chance of having it as well.

While we are glad to have found out what has been going on, we are also sad and a little upset that all of the surgical procedures she has had were for nothing. When the Dr told us that she could have avoided having a Hysterectomy that really hurt us. We do not want another baby right now, but just the notion that we could have and it was taken from us upsets us.

So now the fun part starts. The Dr we have is great. He is one of only 2 Dr’s in our area that covers, Oregon, Washington, Idaho, Utah, Wyoming, Colorado, and part of Nevada that deals with her Type III HAE. We are so thankful to have been referred to him and that he specializes in her type.

Liz also has to deal with lots of tests and upcoming hospital visits to get the medicine she deserves, since it is such a newly recognized disease and not much is known about it. Pretty much the Dr’s are learning along with the patients.

So as for now we are happy to know what is going on. This is going to be a long term, life long struggle, and could end up in the end taking her life early or in many years. But we are going to continue to live day by day and continue on our life journey together, where-ever it may lead.

We hope you are well and are enjoying the Fall Season. We would love to hear from you.