I have been an Interstitial Cystitis (IC) patient since 2002. Since then I also developed a rare lung disease and had a life saving Lung Transplant (Nov. 2014). I decided to create this blog to share my journey through IC and Transplant and hopefully help others as they deal with either IC or Transplant. This is meant to be a place of support, information & encouragement.
I am turning 60 in a month. That's an age where people have a tendency to reflect on their lives; often people begin to retire around then; try to slow things down and take it easier - enjoy life more. As we get older we often realize what is really important in life - family, friends, our health. As a lung transplant patient, I have found myself drawn even more to reflecting on my life and how I ended up where I am. There are no answers. Especially as I post Throwback Thursday photos of me from a young child throughout my life but all before I got sick. I realize it was a different life; that was then, this is now. There's before I got sick and after I got sick. Life IS short; often we don't realize it as we go through our lives, work to build a career we like, love if we're lucky. But one day I post a Throwback Thursday photo of me at 28, healthy and enjoying life, when it really hits me I'm turning 60 in a month and I've been sick with one disease or another for 13 years! How on earth did I end up here, like this? Suffering from multiple diseases (Interstitial Cystitis and associated co-morbid conditions; cardiac issues and Epilepsy) has been challenging enough. And then, just to make my life even more challenging, in November 2013 I wake up one day with a bad cough and think I have a cold. Three months, multiple hospitalizations and a trip to the Mayo Clinic later, I am told I have an incurable, rare lung disease called Idiopathic Bronchiolitis Obliterans. WHAT? Now I really want to know how I got here, but the doctors can't tell me. It seems to have happened literally overnight; one day I am fine, then slowly I develop multiple medical conditions requiring I stop working and go on permanent Disability. And as if that wasn't enough, then I get this mysterious lung disease and within 3 months I am told I need a Lung Transplant or I will be out of options. Luckily for me, I was accepted into Loyola's Transplant Program and finally got my transplant on November 3, 2014. It's now 7+ months post transplant. I am doing well, although there are issues that I must deal with, as do most transplant patients. My anti-rejections meds are causing kidney function problems requiring medication adjustments and weekly blood tests. Also, my body is building antibodies that want to attack my transplanted lung and cause rejection, so that has to be monitored with monthly blood tests. It's a juggling act. They must get the medication levels right so that they prevent rejection but don't damage my kidneys to the point I end up in kidney failure, on dialysis and waiting for a kidney transplant. I look at the pictures of myself as a young woman and I just stare at them and can't believe that girl has ended up with all these major health problems. It seems like we are two different people. I've said it before; Transplant isn't for sissies. Seven months post transplant and I still suffer from post surgical pain, need wound care and I will be working on my physical rehabilitation for a very long time. Being in a wheelchair on oxygen for a year caused such extreme de-conditioning, it takes a lot of hard work to get back in shape. I am making progress, but it seems so slow. Once, I was the girl who ran so many 10k's I can't count them, 5 Half Marathons and the 1989 Chicago Marathon. I was an avid skier. Loved anything involving the outdoors. Now, climbing a flight of stairs feels as hard as the Marathon did. Who is this woman I have become? I don't recognize her. But here I am. I've gotten through things I never thought I could handle and I'm proud of that. I never thought I could handle a surgery like a Lung Transplant, but I did. I think all that training I did, helped develop my determination; if I want something bad enough I'll work hard to get it. I have had to work harder than I've ever had to in my entire life over the past two years. I am stronger than I ever believed I could be when I was that 28 year old. I think about that too these days. While I never expected to end up being on Disability and a Lung Transplant patient, I have discovered that I am strong enough to handle all those things. When things get tough and I have a moment, I am able to pull it together by reminding myself how hard I have fought to get to where I am today and with the love and support of my family and friends. As I find myself reflecting on my life, I acknowledge it's been a long and very winding and strange road that has brought me to where I am today. Getting so many diseases and needing a Lung Transplant were not on the list of things I wanted to do in my life. But as I reflect on where I am, it's better than the alternative. So, while I've had my share of challenges, I am glad I am here and will keep fighting and doing whatever my doctors tell me to do. Here's to life and the long and winding road that has brought me here. I am looking forward to celebrating my 60th birthday, the one year anniversary of my transplant in November and lots more family birthdays, anniversaries and special events! Sometimes reflecting on your life is a good thing. While my life hasn't turned out as I would have expected or even wanted, I am here and for that I am blessed and grateful!
I have written a lot over the past year and a half about my experience with lung transplantation. I thought it would be informative (my goal is to educate as often as possible) to share some videos from Loyola where I was lucky enough to be accepted and had my lung transplant. None of the videos are long but they give you excellent insight into what the process is like for those of us that go through it. I hope you'll take a few minutes to watch and learn. This is my Team that I trust with my life; they are simply the best.
Today is a very important anniversary to me and as I look at the calendar I cannot believe it's been a year. I take a moment to stop and be grateful for today is the day, one year ago exactly, that I got the call from Loyola that I had been put on the UNOS Waiting List for a Lung Transplant! June 10, 2014. It had taken multiple stays in my local hospital, a trip to the Mayo Clinic, being denied as a candidate by the University of Chicago, finally being given an appointment at Loyola Medical Center to talk to the Transplant Doctor about being accepted into their program. Followed by a week long stay in Loyola undergoing more testing than I thought was even possible, more blood taken I surely thought I'd run out. Then the Transplant Team had to meet to review the results of all those tests and decide if they would accept me as a Transplant Candidate in their program. It had been since November, 2013 since I had gotten sick. And all this time I kept getting worse and no one could tell me what was wrong. When I was finally diagnosed at Mayo and told I would need a Lung Transplant, I naively believed I would return to Chicago and just get accepted by one of the Transplant Hospitals. But no, it was not that easy. Sometimes it felt like I could get an appointment with the President easier than I could get accepted for a Lung Transplant! Finally, one of the Transplant Nurse Coordinators called me with the news. After 7 months of struggling with this mysterious illness that came out of nowhere and was threatening to take my life, I was given the great news that I had been accepted into Loyola's Transplant program and was now officially on the UNOS Waiting list for a new lung! So today is a special day. Getting on that list is so important. If you don't get on the UNOS list, you won't get a transplant. It's that simple. It was great news and I will never forget the tears streaming down my face at the POSSIBILITY that I could get a new lung and my life would continue. The waiting for that new lung also began that day. Because while I was just given great news, there's no guarantee that I would ever get my lung. We need more organ donors. It's that simple. We all think we're going to live to be old and gray, but you never know and should the worst happen, do you want your legacy to be one of helping others live? I hope so. So my request on this anniversary of being listed on the UNOS Waiting list for my lung (and I am now 7 months post transplant and doing well), I'd like to ask everyone to consider being an organ donor. Many who think they can't be a donor, actually can. And even if all your organs can't be used, often many can be; corneas, tissue and more. Please consider being an organ donor and letting your family know that this is your wish; put it in writing. Here's a link to the UNOS website where you can read about the urgent need for more organ donors.
This Anniversary of being put on the UNOS Waiting list is a date I will never forget. It ended up saving my life thanks to the generosity of an anonymous and selfless person who gave me the ultimate Gift of Life!
Me After my Transplant Enjoying Life and my Family!
It is now 7 months since my Lung Transplant. While there are and have been bumps along this road, I am alive. A year ago I still had not been put on the UNOS waiting list. That anniversary is in a few days. You've probably noticed that I take note, celebrate in small ways the many milestones that come with being a transplant patient. It seems to be a transplant "thing". But we have so much for which to be thankful, for without our transplant, there would be nothing to celebrate. By the time I got my lung, the doctors were extremely concerned that I would live long enough to get my organ. So these milestones are very important to me. Every single morning that I wake up, I think of the anonymous donor that gave me the ultimate Gift of Life and the lung that saved my life. I will think of the day that I was finally put on the UNOS waiting list. I will celebrate every time I make it one more month; June 3rd was my 7 month anniversary of getting my transplant. As the months tick off, the Transplant team tells me how great that it is. I am working so hard to make it to the one year mark and hope everything continues to go well, or is manageable, so I can celebrate my one year anniversary of what I am calling my "Re-Birthday"!
So, when looking for an Inspirational Quote for today's post, I came across this and it really seemed appropriate to me. I am grateful every single day to be alive and enjoy spending time with family and friends. That's what is important to me and what makes me smile!
