You are on the Transplant list…. Now What?

Are you facing having to undergo a lung transplant? The “Good News” that you are on the transplant list may have been a long time coming… or, may have happened so quickly you were surprised.

Either way, the events leading up to being on the list are grueling, and scary… so many tests, so many days of poor breathing.

There is much to do now, but here are 5 Things to consider and pay close attention to while you are waiting.

First, your oxygen requirement. Every little movement at this point likely requires you to bump up your oxygen liter flow. Don’t fool yourself that you are ‘just going into the kitchen’ – if you desaturate going to the kitchen, then you need to wear your oxygen to go into the kitchen. Allowing your sats to drop below 88% makes your heart work harder.  If your heart is worn out, you will not get a transplant.

Second, your strength. You will need to keep exercising and working out while you are waiting. The better shape you are in, the faster you will recover. Again, this means staying on top of your saturation levels. Low levels of oxygen will cause you to slow down, which will not give you any aerobic benefit. Keeping your sats up mans you can exercise longer, increasing your endurance and the overall benefit.

Third, your weight. This is not the time to crash diet, but it’s not the time to stress about your health and eat poorly. Fuel yourself well, and exercise.

Fourth, Depression. You’ve been through a lot. And you are about to go through a whole lot more. The good news is, if you keep up with the exercise after the transplant, soon you will feel like a million bucks. Don’t let depression or anxiety talk you out of exercising and eating the right foods. Surround yourself with supportive people – go to Better Breather Club meetings, spend time with people who are there for you. Ditch the unsupportive people….. you need positive healing energy right now. You can join my Facebook group here: Breathing Specialist Page

Fifth, The delicate balance of medications. After the transplant, you will have a lot of medications to take. Make sure you will have a way to remember to take them all. The good news is, likely after the transplant you can lose the oxygen and possible some of your inhalers.

Lastly, make sure you are reachable! Keep your phone on and charged, and if they give you a pager, wear it– don’t let it fall to the bottom of your purse or backpack. I once had a guy in my Pulmonary Rehab group who was on the list. All during class one day, I kept hearing this faint, intermittent ‘beep’. I couldn’t figure out where it was coming from. He was kind of a big guy, and, although his pager was attached to his waistband, his belly draped over the pager….. drowning out the page sound.

I just happened to go back to my office to grab something when the phone rang.. it was the hospital asking me if I knew where this patient was, because they had a lung waiting for him and had been trying to reach him for an hour!

You will have an entire transplant team to help you through this- make use of them, they are there for YOU.