February 20, 2019

Wedding & 65 Roses : Rob & Jen Chapter 2

Wedding & 65 Roses : Rob and Jen Chapter 2

You may remember "Jen and Rob" from the “First Breath After Lung Transplant" video that went viral on October 2017. Well, since then Jen has made an astounding recovery. Next week they are tying the knot, on live tv and in style with David Tutera designing their dream wedding!

If that wasn't enough we've also teamed up with the duo to make a very special limited edition mask, called 65 Roses. To help raise awareness for cystic fibrosis. Read on to learn more!

Jen, Rob, please give our readers an update on how life is going since the surgery?

Jen ; So the first 3 months after my transplant were the most critical, loads of healing to do, and trying to avoid rejection to the new lungs in my body - all the changes I had to make took some getting used to! What didn’t help much either is that prior to the surgery, I was super sick. Even my muscle mass had declined. During the 3 months following the transplant I went to rehab every day, and required 24 hour care as well.

I even had to learn a new way of cooking and eating! There is a big ol’ list of foods I cannot eat anymore; it’s sort of similar to the rules when you are pregnant, and a few more! For instance, I cannot eat anything uncooked, like deli meat. No pomegranate or grapefruit, because they can cause my anti rejection medicine not to be absorbed into the body.

Another strange one is I cannot use pepper shakers because it can contain fungus spores that I could inhale. Same with gardening, I cannot garden unless I’m wearing gloves and a mask. Again because of the the spores and bacteria. No ice, because you don’t know how clean the ice is. Now I have to pretty much only drink bottled or filtered water. No buffet food, and even certain vitamins - the list goes on and on, but luckily I have a great nutritionist who helps me with that.

Rob ; Another thing that happened since the surgery is that the amount of steroids you were taking caused you to develop diabetes, so thats definitely new. However, this aside things have been great - got the all clear in May last year, and now you’re past the most critical time.

Jen ; Since the surgery life just feels so different. I was pretty sick for about 5 years before that, so now it feels great to have my health back and get into my passion again as a Photographer. We have also sent the donors family letters, and we heard back from them a few times, spoke a little on the phone. My donor was called Lacy, and it’s been good to understand who she was and ever since, we have been trying to honour her as much as we can.

So you are having your wedding live on tv and it’s just 2 weeks out! Exciting stuff, tell us how this came about?

Rob ; Super excited about the wedding! Almost a year and a half ago after Jennifer had her lung transplant and the first breath video went viral we were contacted by a media company who was pitching a new show, the lifetime channel. They said they were looking to gift and design dream weddings by celebrity wedding planner - and would we be interested? We for sure thought it was maybe a big joke, probably for about 3 months actually, but we played along. And it went from a couple of Skype calls and sending photos to having our wedding in 2 weeks time, go figure. David Tutera will be designing our wedding and we are super excited!

Do you know what to expect? or is it a surprise?

Rob ; It’s pretty much one big surprise, David Tutera come to see us and us in Minnesota and we talked with him about our dream ideas, and discussed some color swatches. But we pretty much just arrive to our wedding and get a huge surprise. It’s like being guests at our own wedding, we did pick a few songs but thats about it. Jennifer doesn’t get to see the dress until a few days before, but mine did show up in the mail just recently.

How about the honeymoon?

Rob ; No plans yet, I mean we weren’t even planning to get married this soon! Hopefully the dream is that we can do a Walt Disney world Florida, vacation - just the two of us. It’s so much bigger and better than California Disney. We’ve never had a vacation together besides a business trip, but some day we do plan to have a huge trip together!

65 Roses Mask Rob and Jennifer Ronnenberg

So let’s talk about the 65 Roses mask. Why did you design the roses pattern specifically? Give us a little back story.

Jen ; When we were approached by you guys about the first blog, purple has always been my fav colour and is also the color for CF. I said to rob, there is nothing purple! I would love a purple mask. The story of the term 65 Roses is that there was a boy who couldn’t pronounce the word. He always thought his parents and the doctors were talking about 65 Roses, but actually it was cystic fibrosis. So this combined with my love for purple seemed like a super cool idea. My own logo for my company happens to be a purple rose, designed by my cousin. So I took the rose and incorporated it into a repeat pattern for a new mask.

As some of the readers may know, we are donating 10% of the profits to CF Foundation.Can you tell us why you chose this particular foundation?

Rob ; Jen chose the CF foundation because CF has been such an integral part of who she is. As a baby her CF test actually made a false negative, and she always thought she had asthma and allergies. She only found out about her CF at 29 years old, when her son tested positive as a carrier.

From what I am told, there are different mutations and the most severe cases have a double delta 508. Mine is a one copy delta 508, and symptoms show later in life. Up until age 29 I maybe had an upper respiratory infection every year, but other than that I was really healthy. It wasn’t until very recently maybe 5 years where things got really bad.

Rob ; Mutations Jen has on many cases are showing up as false negatives in kids, which means a lot of cases are going undetected. In fact just recently Jen took part in a presentation at a CF Conference that was organised by the Mayo Clinic to present the case of later diagnosis in life. There is just still so much research to do.

Jen ; To be honest when I found out it was a strange kind of blessing to understand what was wrong and why I always had a cough, some people would just e saying that the cough was a nervous tick, or in my head, finally I had answers. So to go back to your question, the CF Foundation do a ton of research. Furthermore, they have so many schemes that help to support people in my situation.

They provide a lawyer who actually has CF herself, and she helps other patients get certain benefits from the government, this is all facilitated through the foundation. Believe it or not, this disease is not cheap, in order to stay alive all the things we need are critical, for example the vests we need to wear can be up to $10,000. I remember at one point, my Mayo Clinic bill was hundreds of thousands of dollars. The foundation helps us get medication and resources, because to be honest our insurance system is kinda crazy, one month my medication is approved, next month it isn’t, even though the same company approved the transplant - insane.

So in short, Ian so grateful for all the CF Foundation has done for me and my friends, and I want to give back.

What other work have you been doing with different foundations? Whats next after the big day?

Jen ; Our focus right now is to get the word out there, and being involved in as many events as possible. A neat thing is the mayo clinic - social workers sometimes ask Jen to go visit the patients waiting for a transplant, and offer some kind of reassurance. Another thing we are working on is we have become ambassadors for the donate life organ foundation, trying to get as many people to sign up for organ donation as possible.

We continue to work with the CF Foundation, they do these walking events called great strides on weekends and everyone walks for charity. Raise awareness and support families. Rob is working on something called Project CF Spouse, which helps adult spouses of CF sufferers. Of course we are super excited that 10% of the profits on from the 65 Roses mask will be donated to CF Foundation too.