Genetics Project

Just last week, I received the following email:

Hi! I'm doing a genetics project on cystic fibrosis. Each member of the group has a different role and I have "patient." I read in your blog that your husband has CF. I was hoping you could tell me some things the websites didn't and your blog didn't..like how cf effects both his and your emotions and what toll it takes on married life and mental well being. if you could write back, I'd appreciate it! Thanks!

Yes, I can answer to the individual back in an email but how will that help all of the other people out there dealing with this disease. So, I figure - why not answer in on my blog. :)

The emotional effects of Cystic Fibrosis (CF) on our relationship has never been easy. Shortly after we began dating, I was visiting him in college and I am not sure what caused the discussion of his disease but I remember that I ended up screaming and crying. The message was clear: I loved him, hated his disease, and wondered how God could give someone such a beautiful soul and such an ugly disease at the same time. Not only do you deal with the illness through the physical acts of being sick but you also have a lack of intimacy and closeness that occurs from the disease. First off, and I am being blunt here, intimacy includes heavy breathing and long kisses - how in the world can you do that when the person cannot breath correctly? I cannot even begin to count how many times Greg has coughed in my mouth when kissing or has had to stop in the middle of some "intimate" act because he had to run to the bathroom to cough up stuff. How would that make any partner feel to have someone have a major coughing fit, to where they are coughing up junk, turning red, gagging, etc. when you are being intimate? It crushes you because even though you know it wasn't anything you did, you feel bad and emotionally it is draining.

Now for the married life. (smile) When you enter a relationship with someone with CF, you have what I call a "triangle relationship" - you, your mate, and the CF. It is like the little brother that just wont leave you alone. You have not only your feelings for the person to think about and the commitment to them but a commitment to hospitals, sickness, and possibly being left a widow by the age of 30 years old. Then there is medical insurance to think of, career paths that may have to be put on hold, responsibility of maybe being the only bread winner in the family if the other one should no longer be able to work, and then there is the nursing you may have to do. Me, the person who hated blood, has had to do things I never even imagined to keep my husband alive long enough to get him to his transplant - inserting (popping) a trach tube in his throat, cleaning the trach area every day, hooking him up to a vent, bathing him, suctioning him (and all that come out of CF lungs), cleaning up body fluids, cleaning g-tube area and all growing tissue, etc. Then there are the mountains of doctors appointments and trying to work full time and get some sleep/food. Right before Greg's transplant, I was working full time, the only bread winning, carried the insurance, took care of our house, went to grad school, etc. all at the same time. Not an easy feat.

So, is this all meant to discourage someone from being in a relationship with someone with CF or waiting for a transplant - no way! But, I will admit it takes one heck of a strong person to do it. Someone should not be shamed for walking away from a CF relationship in the early days of it - I give them credit because they know they are not strong enough and it gives the person with CF the opportunity to find someone that will love them no matter what. It is kind of like bringing all the bad things (illness) that can happen out in the relationship right away rather than being married for 20 years and then it happening. A number of people divorce because of this type of stress so it is good in a way that they know what they are up against from the beginning. And, lastly, I would like to say that any person that gets into a relationship with someone in this situation is being blessed. People with CF are the most wonderful people I have ever met and have the most beautiful souls - people say that I am a blessing to my husband but I truly believe that we are both blessed. Would I enter this relationship again, knowing what I know now, in a heartbeat! My husband - with or without CF - is worth it!