In November 2015 and at the young age of 54, Ricky was diagnosed with Idiopathic Pulmonary Fibrosis (IPF).
What exactly is IPF? Well, to start, it's a crappy disease that hardens the tissue of the lungs. What exactly does that mean? As the lung tissue hardens, it can no longer process oxygen. When Rick breathes, unlike people without this disease, he struggles to get enough oxygen to support all of his other organs. He will often feel short of breath, tired and fatigued all from something as simple as walking up a couple of stairs. Sometimes, if the stars don't align and he's sick or overdoes it, he can end up hypoxic which means he's not getting enough oxygen to his brain. This condition can often seem similar to someone who's maybe had a little too much to drink (slurring words, stumbling, forgetfulness), however it's life threatening for Rick. If he goes too long without the right amount of oxygen to his brain and other organs, it can end up in significant damage. All in all, it pretty much sucks.
However, Rick has been the model of strength and grace (despite his lack of dancing skills, he excels at gracefully handling his disease). He's shown us what courage and bravery really look like in accepting this illness and doing everything within his power to beat it. And now, it means he needs a transplant. Since the beginning the doctors have told us that Rick is a healthy man with bad lungs. With a transplant, he'll have the opportunity to change his life and literally a get breath of fresh air.
Where is Rick today? Rick is currently in the process of going through testing to get onto the transplant list. He has to have tests and tests and more tests. It's not only a lot of tests but it is also emotionally and physically draining. Right now, there's always the looming question of whether or not he will get on the list and that's pretty scary. At this point, he's had the majority of tests and now needs to have a minor surgery to correct an issue with acid reflux. When it comes to transplants, the doctors want to have all of the knowns addressed so that when the recipient gets the new organ the only unknown is whether the body will accept or reject the organ. With that being said, an issue like acid reflux may be something we all deal with and manage but for someone potentially receiving lungs it could cause him to aspirate into the nice brand new shiny lungs and hurt his chances of acceptance so the doctors want to fix it before that even can happen. Over the next couple of weeks, Rick will have minor surgery to correct the issue and then once that's complete, his transplant team will take his case before the transplant committee. As long as all goes to plan, we are expecting to see Rick on the transplant list as early as late April.
Who is supporting Rick? Rick has a rock star power group in his corner. His wife of almost 35 years, Laura is his primary caregiver, advocate and unwavering rock. Though Laura struggles with her own health issues, she has been a constant beam of support and cheer in his life. She finally got to put those years as a high school cheerleader to use. His only child and daughter, Jessie, has a fabulous job that's providing the flexibility she needs to attend all of her dad's important appointments and support him every step of the way. Jessie is constantly looking for ways to take worry and burden away from her parents as they have so much to deal with just with the disease and upcoming transplant. This site as well as the majority of the posts will be coming from Jessie in an attempt to centralize all communications around her dad. My parents share their home with my mother's mother, Millie, or as I like to call her Granny. Granny provides much needed love, comfort and affection. She's an excellent listener and she provides the mental support that both of my parents so need during this time. In addition, Rick, Laura and Jessie are tremendously lucky that Rick's Aunt Carol is a nurse who is willing to donate a large part of her time to being their medical advocate. Aunt Carol provides insight and medical knowledge that the family is so incredibly thankful to have and use to make sound medical decisions concerning the options that Rick has. Jessie's long time partner, Frode, is providing Scandinavian humor and mispronunciations termed "Frodian Slips" to entertain the family and lighten the mood, in addition to all clean up duties. All joking aside, this is definitely a tough journey for the whole family. We are incredibly grateful for the love and support of all of our family, neighbors and friends. Dad is also incredibly lucky to work for an company who provides unwavering support during this challenging time. Their commitment and loyalty to him has definitely been a beacon of strength for him as he deals with the stresses of this disease. Please feel free to send some love or kindness to any of the family during this difficult time. Any effort is appreciated. Outside of these primary support people, we are hoping to rely on all of you to provide Rick, Laura and Jessie the support they need to make it through this difficult journey, and the Heckman's thank you in advance.
You may be thinking "I really love Rick and his family, but how can I help?"
- Germs: As much as my family wants to see you, stay away when you have a cold or cough or anything more severe. Even if you think you might be coming down with something, it's better to just stay away until you're better. Before transplant, this could potentially impact Rick's ability to receive the transplant. After transplant, worst case scenario this could give him a severe infection due to his compromised to non-existent immune system which could cause him to reject the transplant or worse. Just remember for the first year after transplant, the Heckman's will be overly cautious. Rick will be refraining from contact (no hugs, no kisses, no handshakes) and the rest of the family may limit their contact. We may also become obsessive anti-bacterial users or change our clothes before entering the home. Please don't be offended, we just want to do the best to protect Rick. Please keep this in mind when visiting Granny/Millie who shares my parent's home.
- Kindness: The road to a new lung is going to be long and difficult for all of the Heckman's. Please reach out and provide a kind word, a funny card or a caring phone call. The more cheerleaders Rick and his family have on the way the easier it is for them to keep their spirits up. Your kindness may be their lifesaver on a bad day. There are no wrong words to say when said with compassion.
- Support: If you're looking for more help to provide, we'll be providing the ways in which you can support the family on this site. If you have any expertise in medical billing, insurance, or estate planning, we're trying to get those things under control and would appreciate your assistance.
Still want to do something more?
Normally, in situations like this bringing food or even sending flowers is a lovely gesture. However, my parents have a very strict diet that they both keep to due to their respective illnesses as well as some allergies to plants. And things like chocolate, soup, fruit baskets, even a home cooked meal might be wasted on them or even dangerous for Rick post-transplant. If you'd like to do something more than what's mentioned above, consider donating to the awesome hospital that's guiding my dad through every step, CaringBridge itself or my dad's medical expenses.
- Temple Lung Center: My dad is getting the best care available to him. Not only is the team at Temple Lung amazing at the science behind what they do, but they are also kind and caring. They have helped us all laugh through this difficult experience and they truly care about the success of my dad. If you want to donate to anyone, donate to their program so they can continue their awesome work. (Link in Ways to Help section)
- CaringBridge has a "Donate now" link in the section "Honor Rick with a donation to CaringBridge" which provides CaringBridge money to support the administration of these sites so families like ours can have a free site to use and share information with friends and family.
- Not only are lung transplants very expensive, but all the little things that my parents now have had to buy quickly add up (medical masks, oxygen tanks, medicines, etc.). The transplant itself can be millions of dollars without insurance. Luckily, Rick has relatively good insurance. However, not all of the expenses are included. It's been really hard for my parents to make themselves comfortable with the idea of donations as they feel so blessed with their life. However, I've made them understand that people are looking for ways to help and ease their burden. One of those ways, if you're so inclined is through a donation. For my parents, this money will go to offsetting any of the treatment expenses outside of insurance as well as the additional necessities that Rick will need for his treatment (for example, additional medical equipment and supplies). We've set up a GoFundMe (link in the Ways to Help section) where you can make a donation towards Rick's bills and care. We've chosen this source as a way to donate so that you can be sure that anything you donate will only go towards funding his treatment. If there are additional funds above what is necessary for Rick's care, the Heckman Family will be donating it to the Temple Lung Center as we hope that future families can continue to benefit from their excellent team and care.
Thank you in advance. You'll be finding posts about new milestones as well as any new information we want to share along this journey. Your support and love during this difficult time is the best medicine you can give to both Rick and his family. THANK YOU!