This is adapted from a Facebook post, with some big updates, so please read through even if it sounds familiar. 

Most of you know in some capacity that Nick has a heart condition and has had a whole journey within that fact of his life. Most of you also know that this past year, his symptoms of pulmonary hypertension have returned and worsened. The journey has started once more. We’ve been adjusting meds, doing tests, driving to SF, Oakland and Vallejo trying to get Nick back to where he was for many years. It’s been hard. Really and truly a struggle.

Nick’s heart and lungs are working overtime, and the output is just not enough to be able to function very well. His body is constantly adjusting to new levels of medication, some of which don’t appear to be working, trying to find a “new normal.” And that’s not even the mental battle. Nick has been doing an incredible amount of work to simply keep going. Move to live, he’s always told me.

The results of the tests have been hard. Each one chipping away at the hope we’ve held onto so hard. Under exertion, or just walking really, Nick’s heart and lungs are at about 30% capacity. Thirty percent. Putting a number to it makes my stomach sour. We knew he wasn’t doing great, but it appears to be a longer road ahead than even his doctor thought.

We’ve slated a surgery for Nick on January 21st to put in a central line for IV meds. The meds will be flowing straight into his heart all the time; it’s a slightly different line and slightly different medication than he had when he was a kid, but the idea is the same. 

If these meds work, he’ll be on the IV line for an extended, but undetermined period of time. Years, most likely. But he will feel better, the quality of Nick’s life will greatly improve. If these meds don’t work well enough, there’s a high probability that Nick will go back on the transplant list. But we are trying to stay positive and not think too far ahead.

We’ve been in the scary part of this for a few months, but the IV line will truly change the lifestyle we have. We’ll have to be militant, regimented and sterile with how we handle the line, the entry point into Nick’s chest, and the area where we prepare the meds. It will have to become a ritual; as so many small things in life are. Wash hands, brush teeth, put toys away after playtime ends, turn on the oxygen line before bed. 

We have an 18 month old daughter, Charlotte, to keep alive and happy. She’s been pushing our buttons, but she also gives us so much love and happiness and smiles and snuggles and it’s what we need at the right time.

On top of all of this, I have been laid off. This blindsided us last week and we are vastly unprepared. Nick has had to stay home from work a lot when he's really not feeling good, which has exhausted his PTO, and now we only have one income. Between Nick taking two weeks off for the surgery, and childcare, regular bills, possible medical expenses (although our insurance is very good, thank God) we also have new and exciting things like needing new tires on my car, a scary check engine light I need to have checked out before the back and forth to see Nick in the hospital in SF. Gas and diapers are expensive, and we need to be able to keep us all fed and warm. 

I won't be able to really get a job for a couple weeks after the surgery, to help with our daughter and to make sure Nick is actually recuperating and not pushing himself too hard. (Said with love, honey.)

We are trying to be ready for all possibilities going forward from the surgery. One of those more terrifying possibilities is that Nick May have to go out on disability or may not be able to return to work. We’re trying to build up a bit of a cushion for whatever lies ahead of us. 

We both struggle a lot with asking for help; it's just not easy for us and we both wish we could handle life by ourselves right now. That said, we're underwater here, and we need a life preserver. 

Thank you all and we love all of you so much, 

Heather, Nick and Charlotte Clifford