The time has come... — Lung Story Short...

Aug 8

Aug 8 The time has come...

During our trip to Maine I knew I had to have a tough talk with Rima. Over the last month her health had gone down even with being in the hospital and on IV's. We had decided on getting her listed at the end of October but in my head we needed to get her on the list sooner. When we were at MNU in April they said this would be the time to get her listed before other health issues arise that would make the recovery time and process more difficult. Of course putting off the inevitable was going to come to an end sooner or later.

I was going to have to have the uncomfortable truth talk. Everyone likes to avoid things they know are true sometimes. Not everyone want's to look in the mirror and admit it's time to climb whatever "mountain" they have been putting off. Unfortunately during our mini family reunion in Maine I would have to be the mirror for Rima. Unexpectedly the conversation came up naturally one night before bed. Rima agreed it was time to get listed on her own. The courage for her to see that, admit it, and decide to face the lion almost broke my heart. Calm cool and collected she sat across from me ready and aware.

So, we're getting listed (I've now started saying we since Rima and I are in this together, no matter what). The next morning Rima called our transplant coordinator at MNU and told her she's ready to be listed at the end of the month. There are a number of things we have to get done before she can get on the list.

She has to get various paperwork from doctors confirming her health/vaccinations to MNU.
She needs to get a letter from her Dentist stating she has no issues pertaining to her teeth, so that they know there wont be issues in that area during anesthesia.
We have to have our Med flight cost coverage confirmed by her insurance. When the time comes we will have to be fly to Minneapolis in a small medical plane. This can be very costly so it's crucial that her insurance covers this costs.
She has to join pulmonary rehab. Which is a program where she works with a specialist to improve her physical condition. She needs to gain as much muscle and weight beforehand.
We need her to gain as much weight as possible before and during being listed. Once she has the transplant and is in recovery she will lose weight and muscle mass, it's vital that we get her to the best place weight wise before so her body has some reserve. This will prove to be difficult since Gilbert the Grape is still the reigning king of her appetite, I'm up for the challenge though.
We have to get our "action plan" in order. This is the plan for when we get the call to get to MNU and quickly.
I have to research places to stay short term and long term while we are at MNU just incase the housing we would like is unavailable due to capacity. They rent out a certain number of apartments by the hospital for transplant patients and if these are full when we go I will need to have some back up choices.
I need to come up with a phone tree of sorts or notification system to inform people when we get the call and when she is about to have surgery.
We need to have bags packed for the both of us and waiting by the door. When you're listed it's like you're nine and a half months pregnant. The call could come at any time and you need to be ready to grab and go.
We need to have a non verbal communication system set up between the two of us. When she gets out of surgery she might not be able to speak for a few days do to the tube down her mouth. So we will have to come up with a card system so she can communicate with me. Suggestions are welcome.
We need to order her a mattress topper. Hospital beds can be uncomfortable and not the best so for her to be as comfortable as possible I suggested my amazing foam mattress topper. We think this will be a game changer for her.
We need to reach out to a number or charities and CF/transplant related organizations. Many of these offer financial assistance which will be needed since the two of us wont be working for at least four months.

I'm sure there will be a few more things to add to our list but so far that's it. Once we're listed life will change. We can't go far from Denver so no more weekend trips exploring, so sad. We also need to have service with our phones at all time, I will no longer be going hiking in the mountains, so sad again. Drinking is going to be a no no. We and by we I mean I can't be drunk or tipsy when the call comes to get our butts to MNU. We will need to be able to execute our "get to the airport plan" quickly and efficiently.

We will find out what the list looks like before we are officially listed, meaning how many people are on it before her. We hope we wont be waiting for a long time. When we were at MNU in April the doctor estimated three months max but he can't officially state this, this was his guess. He told us he has had patients get listed and then a week or two later get the call. I'm not going to lie when we get listed my anxiety level will probably be at a boiling point at all times.

Life is about to change forever for they two of us. The next few weeks we're going to enjoy and savor as best as possible. I'll be returning to Denver by August 23rd. Until then I'm going to enjoy my friends and "freedom" in Brooklyn. Rima is in MA till the 9th and then she has a few friends visiting her in Denver till the 19th. She will also be enjoying her friends and "freedom". Once we get listed and once we get the call and Rima is in recovery I know we will see life differently. Things that use to bother us or seem important will no longer. Mundane every day worries or stresses will be inconsequential to us. Until then I want Rima and I to revel in these worries because once everything happens who knows how we will see life. Maybe we will both grow in wisdom by 20 years?!