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Cystic Fibrosis Foundation

Transplant info

Become an organ donor

Stages of time

Stages of time

Time sure does fly by. Time is a strange point of perspective, even though I feel that time is going by quickly, it also feels like it's crawling by in ways. It's been a year since Rima and I embarked on this transplant journey. Our road began back in Boston and then took us to Colorado, shortly after up north to Minneapolis. Every day that passes we mark of a dash on the calendar. Another day without the call. Spring is starting to work its way into the earth and air. Birds are chirping socially, beckoning the warmer weather. This past week also marks six months of Rima being on the list. Wow, if you had told me we'd be waiting this long six months ago I would have laughed at you and thought it was a joke. You can't blame us since the doctors here all told us the long end of our wait would probably be around three months. 

Rima and I don't like to complain. People wait on the list for years sometimes. Some sadly don't make it that long and pass away while waiting for new organs. So in the grand scheme of things six months is barely a blip on the radar, we know this. My main concern is that it's just a matter of time before Rima get's sick again. I'm not knocking on wood after saying that because a piece of wood won't stop it. It's a fact, it's just a matter of time unfortunately. So time better get on the right side of our fence and bring some healthy lungs her way and soon!

Doctors and nurses from both Colorado and here have said that the call could come at any time. They would give us examples, some people can wait a day or a couple weeks, some wait longer. After hearing this spiel countless times from numerous people I've noticed one thing in particular and it really bothers me. All these people would highlight the short end of waiting. For instance "the call could come tomorrow, or even in a few hours" or "I know someone who got a dry run call and then a week later got the real call" or "I have a feeling the call will come soon, it always does for people". This is a mistake, all these people are giving false hope and feeding this mythical beast. Yes, some people wait a day or a week, but many or I should say most don't. The majority of people on the transplant list wait months or even years. 

In my eyes, this is a great disservice, giving false hope to people who will cling onto it immediately. Yes, of course your nurses and doctors want to keep things positive and hope alive, but what's wrong with a little honesty and perspective. If you're going through a transplant then you already know some real deep shit. You already know what can go right and wrong. So why not have your doctors do you the service of maybe concentrating more on the longer end of the waiting game. For example, explaining that yes some people have a short wait, but you should prepare for the long end. Prepare to be waiting for months if not a year or longer. It's better to prep for the long game and then be pleasantly surprised with a call a week in vs waking up every day thinking this is the day.

Sugar coating anything in this stage of the game is a little offensive. Anyone going through a transplant is incredibly brave and strong. By giving false hope to these fighters they're stripping them of their bravery and stamina. I'm in awe of all CF fighters, especially ones who are pre and post transplant. It takes unbelievable strength physically and mentally for these beings to go through their daily lives. By creating a short imaginary timeline even if it comes from a good place should be balanced with the unpleasant end of discussing your long term plans with waiting. The medical community needs to change the way they approach this uncomfortable subject. Uncomfortable is a perfect way to describe the interaction between patient and doctor when discussing hypothetical waiting periods for transplants. The major elephant in the room is that you're waiting for someone to pass so you can live. The second elephant in the room is that your doctor is not a magician and does not have a crystal ball. Take whatever they have to say in terms of waiting on the list with a grain of salt. Their guess is as good as yours and that guess is a shot in the dark. 

I feel the conversation needs to take a major shift. From false hope to helping patients, caregivers and families prep for a long wait. To make sure these humans take care of themselves mentally and physically while waiting. To not jump up every time the phone may ring and have their hearts start beating quickly. The shift needs to start at conception of a transplant by focusing on the reality that waiting for longer than expected will happen. If you don't end up waiting long at all then that's amazing and wonderful but you're the exception to the rule. To not leave every clinic appointment with words of your medical team ringing in your ear "any day now, any day." Bless them for being so positive, but it's a handicap that's hindering their patients.

This past week Rima and I have been taking it pretty easy. On Tuesday the weather app reported that it was going to be a beautiful sunny day so Rima and I had to make the most of it. Even though she was having a sloth like moving day and didn't feel very well she pushed through it. I commended her on our drive to Franconia, a sculpture park about 45 minutes north of us. If I had felt like she did you best believe we would still be at home. Actually I'm pretty sure everyone I know would have stayed in bed if they had felt like she did, but Rima's a super hero so she sucked it up. I'm glad she's built this way because we had a great time at the park. 

 Smoke fountain from  Sparkle Rock Pop

Smoke fountain from Sparkle Rock Pop

Franconia is an outdoor sculpture park that's a nonprofit and is on 43-acres of land. They have artists from all over who have their work displayed on the grounds. A majority of the work is very large in scale. Some of it you can even climb, sit or walk on. We only saw about a quarter of the park since Rima was having a hard breathing day so walking around proved to be difficult. I was swearing at myself for forgetting to bring the wheelchair. Next time I'll remember! 

Thursday Rima had an eye appointment to make sure her eyes were okay since she's on medications that can damage her eyes. We were unaware that her appointment would take longer than say 45 minutes, the person who scheduled the appointment failed to mention that it would take 2- 4 hours. Or that they would dilate her eyes, so to be sure she had a driver. Trust me I let the doctors hear it from me about the lack of information that was provided to us from the scheduling person. We ended the day with some art therapy and some good old binge watching of Weeds. 

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F U April Fools'

F U April Fools'

Bonding creatively

Bonding creatively