Thursday, August 21, 2014
Ever since I was diagnosed with terminal lung disease and told I needed a Lung Transplant, my life has revolved around my health, medications, hospital stays, doctor visits, tests, tests and more tests. As I was already on Disability for another medical condition already, I didn’t think it was possible to spend more time at doctor appointments etc. Boy was I wrong!
I don’t know how anyone else would react when told they need a Lung Transplant, but for me it was a very scary prospect. Very scary. Yet at the heart of it, it’s the only answer to staying alive and so for me, the answer became clear. YES, I want a transplant. Then you go home and begin to question your decision. Well, at least I did. But I want to live; I want more time. For me, there is only one way to get that - a Lung Transplant. It wasn’t on my “bucket list” - it is now!
It’s been a process. A process of going through all the testing and finding yourself fighting and fighting hard, to get the hospital to even accept you as a Transplant Candidate. As I went through all the steps of this very lengthy process, more and more I began to really want it.
I need a Spirometry test. No problem. I need another Chest CT. Let’s go. I need a MUGA Scan. Well, whatever the heck that is, I’m ready. I need a Coronary Angiogram AND a Pulmonary Angiogram. Bring it on and - no I will not do it with any sedation; just a local anesthetic for me please as I don’t want to spend the rest of the day throwing up! So suck it up, and just deal with it! I need an Arterial Blood Draw - 3 times (NOT fun!!). Let’s do it! I need a surgery to have a Feeding Tube placed before my transplant because of my swallow dysfunction. Oh for crying out loud - fine, let’s go. How soon can we get it done!! Six weeks later I naively go to get the feeding tube shortened only to find out the way that gets done if I want the little button type is to YANK the original one out of my stomach and I’m told it will hurt. The doctor says it will be fast, but it will hurt. Seriously? Really? Close my eyes, hold my breath and on the count of three, go for it! The man did not lie - HOLY MOLY - that hurt!
They don’t make getting a transplant easy. It shouldn’t be. But man, if someone had followed me around with a camera I am confident you’d be surprised by the process. And this doesn’t even count the mandatory Lung Transplant Education Classes and mandatory Lung Transplant Support Group meetings, meeting with the Transplant Psychologist, Dietitian and Social Worker; get an updated PAP Test, Mammogram and Dental Cleaning. Get family members to commit to being my Primary & Secondary Care Givers and sign a document from Loyola that says they are committed to this. I must do Pulmonary Rehab to regain as much conditioning as possible before my transplant so I can do the post transplant Rehab. It isn’t easy. I have to crank the oxygen up but I’m doing it and I’m getting some strength back.
I need a Bipap to sleep at night and I am hooked to Oxygen 24 hours a day. And as time ticks by, I am finding my baseline “at rest” oxygen needs keep going up. When I first got Oxygen, I was on 2 liters. Slowly, over time I had to increase it to 3 liters, then 4 liters. Now it’s 5 liters. Dragging portable oxygen tanks everywhere I go is no small feat. It takes a team to get me anywhere these days.
Time takes on a whole new meaning. Waiting is hard. Will I get my transplant in time? These are the things a Transplant Candidate thinks about. The very things the Transplant Team said would be hard. Waiting.
Nothing has ever been as hard as waiting for the phone to ring telling you your organ is here and come to the hospital for your transplant.
Stay positive is what everyone says. I’m trying; it’s hard. I speak in the affirmative to reinforce that positive attitude. “When” I get my transplant. “When” I am recovered. I took the word “if” out of my vocabulary months ago. We all talk about “when”.
I have been told the call could come at any time. So every night I go to bed wondering if tonight will be the night. I take my cell phone with me everywhere I go. I’ve taken everything they’ve thrown at me; more than I ever thought I could handle and come through it feeling pretty proud of myself.
I want that Transplant! Bring it On!
Monday, August 18, 2014
Milestones. We all mark various milestones in our lives: birthdays, anniversaries, and so on. These days my milestones all revolve around one thing. Getting a Lung Transplant.
It's been 9 months since I got sick. I cannot believe it was last November that I woke up one morning with a cough and thought, darn, I've caught a cold. If only.
It's been 6 months since I went to Mayo Clinic and was finally given the correct diagnosis for what was wrong with me. Idiopathic Bronchiolitis Obliterans. Six months since they said those words followed up by "and you need a lung transplant". Say what? Shock doesn't begin to describe my reaction to this news on that day.
It's been 3 months since I was discharged from Loyola Medical Center after spending a week there being evaluated to see if they would accept me for a Lung Transplant and being stepped down on my Prednisone dosage in a medically controlled environment. What a long week that was.
It's been 2 months since I got the call that I had been accepted as a Transplant Candidate at Loyola and listed in the UNOS http://www.unos.org/ system. That date will stick with me forever.
There have been many dates along the way that I will never forget. I know exactly the date I woke up coughing and my life changed forever. I know exactly the date the doctor at Mayo said I needed a transplant. I know exactly the date I got listed with UNOS.
And yet, I cannot believe how time has flown by. Some days it feels like it's dragging as I do what the Transplant Team said would be this hard - wait. Wait for the call to come that they have a lung for me. And then I cannot believe it's been 9 months (moving in on 10 rapidly) since I got sick.
Time really does fly. Especially when you are fighting for your life. Every day seems at once an eternity and yet also seems to whiz by in the blink of an eye.
I'm as ready as I'll ever be. I want to get on with this. It's a scary prospect having a lung transplant but it's what I need and what I want. I want more time, so I want a transplant.
I am hoping time continues to seemingly fly by and the call will come that they have my new lung. In the meantime, I wait. Anxiously waiting, going to Rehab, taking my meds, coughing, struggling to breathe. I wait. Tick tock, tick tock. Let's get me that lung please!
Sunday, August 10, 2014
Today concludes my 7 Days of Thankfulness. I hope it has given us all food for thought. I wondered if I could come up with that many things, yet I did when I took time to think about it. Things big and small, people and more. I may be extremely sick, but still have much for which to be grateful. This made me think about that and appreciate them. I hope it did the same for you.
Usually Sunday is my Inspirational Quote and Song for the Day. Today I am morphing that with this. So, here is my final 7 Days of Thankfulness post along with a song I like that I felt fit, at least for me.
It can never be said enough, so I am taking a some liberty here with Day 7's things for which I am Grateful:
Saturday, August 9, 2014
1. I am thankful for the generosity of others; friends driving me to appointments, bringing us meals and running errands.
2. I am thankful for my wonderful hair dresser who has come to my home to cut my hair for me since it’s difficult for me to go places, and on her day off!!
3. I am thankful for my family’s sense of humor; it’s amazing what laughing can do for you!
Friday, August 8, 2014
Thursday, August 7, 2014
Wednesday, August 6, 2014
1. I am thankful for all the people I have met through the ICA and social media that, despite their own medical problems, are going out of their way to pray for me and send me encouraging messages.
2. I am thankful for each day that I wake up.
3. I am thankful to be making progress in physical therapy to prepare for my transplant.