A LOT SEEMS TO HAPPEN IN NOVEMBER!

I don't know what it is about November, but practically all my medical woes began or were diagnosed in November. Some bad, some good but I recently realized that November, which will be here in a few days, has many health "anniversaries" in it.

13 years ago this November I was diagnosed with a rare, incurable, painful bladder disease called Interstitial Cystitis (IC). To learn more about IC, check out the ICA website:  http://www.ichelp.org

Luckily, I was referred to one of the most excellent doctors in the field and this November it's been 13 years since I have been under his care. He has worked tirelessly to help my IC and get me some relief. If there was/is a treatment we tried it. Unfortunately, medication and I do not get along and all the pain meds that many IC patients take, I cannot. I finally opted for the InterStim Sacral Nerve Stimulator to help my frequency and we found the right instillation cocktail that helps my pain. I can even do them at home. Unfortunately, as hard as I tried, my IC and the associated pain and exhaustion from lack of sleep, forced me to apply for Social Security Disability (SSDI). My doctor wanted me to apply 2 years before I did, but I wanted to keep working. I tried for 2 more years before talking to my doctor and he actually told me he was glad I was going to apply and he would do all he could to help me. It's been a long and winding IC journey, but I am so lucky to have the doctor I have and can't believe I've been seeing him for 13 years in November!

Two years ago in November (November 11, 2013 to be exact) I woke up with a cough that seemingly came from nowhere. The cough got worse and worse and after seeing my Primary Care doctor multiple times, he wanted me admitted to the hospital. After a week in the hospital, all the tests were inconclusive. I was referred to many different specialists who were convinced they would figure it out but none of them ever did. By February, and another week long stay in the hospital in December, my doctor said he had a colleague up at the Mayo Clinic in Rochester, MN who had agreed to see me if I could get there. My family scrambled and we were at Mayo late afternoon the next day with all the tests and doctor appointment scheduled for the day after that. It was a trip well worth making, as I was finally given a diagnosis. Not one any of us expected to hear. In just 3 months I had gone from, being as OK as someone on SSDI could be to being told I had what was called Idiopathic Bronchiolitis Obliterans and that I would need a Lung Transplant to live before the end of the year in all likelihood based on how fast the disease was already progressing. I've never been more shocked and scared in my whole life. 

My doctor back home went to work trying to get me appointments with transplant doctors. The first one I met with turned me down and would not accept me into their transplant program. He said I was too complicated. But my doctor never gave up on me and got me an appointment with the Transplant Doctor at Loyola University. By this time it was April. Nothing in medicine seems to happen fast and I was getting sicker by the day. By this time I was on Oxygen 24/7 and could not walk without using a walker. If I had to go a long distance, I needed a wheelchair. Having to be pushed around in a wheelchair while pulling oxygen around with you is no small feat. I was finally accepted by Loyola  for a Lung Transplant and listed with UNOS in June 2014. So the waiting for my transplant began. Summer came and went as I waited very anxiously for a life saving lung transplant. It seemingly was never going to come.

But again, on Sunday, November 2, 2014 I finally got "The Call" (9 days short of one year since waking up sick); they had a lung for me and I was to get to Loyola as safely but as quickly as possible. The official date of my transplant is November 3, 2014. So once again, another medical milestone in November. I'll be writing about my one year anniversary on that day.

But, whatever it is about November, lots of medical things seem to happen in that month. Of course there have been many more. I have been sick for 13 years now; dealing with my IC, then the Lung Transplant. 

Getting a Lung Transplant, or any organ transplant for the matter, is a major surgery. About as major as they get. I am still recovering but now I'm experiencing what the Transplant Team warned us about before our surgeries. Side effects from all the medications I must take to keep my body from rejecting my lung. Kidney function issues requiring IV saline infusions, low white count requiring medication injections in the stomach, constant blood tests. Getting sick because I am immunocompromised and running a fever; antibiotics for the infection I got. Taking 35 pills every single day. 

Yes, November seems to be a very popular month for me to get sick, have surgery etc. There is always something going on since my transplant all year long: a bronchoscopy every 3 months, a Clinic visit with my team every 3 months for life, scheduled and unscheduled blood tests, reacting to problems that arise. It's never ending. 

Don't get me wrong. I am blessed and thankful to be here and treasure the Gift of Life I was given. But often people think, we get our transplant, take our pills and all is fine. If only that were true. As the doctors explained, we will be facing a whole new disease state from all the medications we must take and it's challenging, not fun and some days you just don't feel like being a pin cushion, or having a tube shoved down your throat to check your lungs and make sure there is no infection or rejection. Some days you just want to be normal again. But if I want my lung to stay healthy and stick around for a long time, I must do whatever the Transplant Team tells me to do. 

I'd like to stop the November trend. Unfortunately, as I move forward as a Transplant recipient, there will be plenty of doctor, labs and hospital visits for the rest of my life. So I am learning to adjust. Some days are better than others. I'm getting used to it; well, I'm working on it!

Diagnosed with IC/Volunteered for ICA as Patient Advocate

Lung Transplant 

Rehab

The Hike for Lung Health

The Horine Family All Supported Me!

Be an Organ Donor!

SUNDAY'S INSPIRATIONAL QUOTE & SONG FOR THE DAY!

"What A Feeling" - Irene Cara

IT'S NOT LIKE THEY DIDN'T WARN ME!

Before you get accepted as a Transplant Candidate, you go through a lot. You meet the Transplant Pulmonologist, go through a battery of tests that take over a week. Some centers require we attend pre-transplant education classes, which I did. And if you're lucky, you get accepted for that life saving transplant and put on the UNOS Transplant Waiting List. And the waiting begins.

Part of that process, the very first meeting with the Transplant doctor and the pre-transplant education classes, is where you learn what having a Lung Transplant REALLY means; what it's really like. Frankly, they basically scare you to death telling you what to expect before, during and after. I will never forget the very first words the doctor said to me at that first meeting. "While transplant can be a life saving operation, make no mistake, you are trading one disease state for another."

Trading one disease state for another. Those words ring in my ears to this very day.  And the doctor did not lie. He was right to warn me what to expect, especially since I hate surprises anyway. I knew what could happen, what to expect. I was prepared for the possible negative issues that could come up post transplant. Or so I thought.

I keep telling myself, it's not like they didn't warn me. I should not be thrown or upset when I get told I'm battling to keep my kidneys functioning and trying to avoid kidney failure. After three rounds of IV Saline infusions to treat elevated kidney function levels, I should be taking it in stride. It's not like they didn't warn me. Easier said than done it turns out.

I should be prepared when I get told that my White Blood Cell count is way too low, even for a transplant patient. We were told ahead of time that the anti-rejection medications might affect our kidneys and our white blood count. So I shouldn't be surprised. It's not like they didn't warn me. Again, easier said than done.

The fatigue, headaches, tremors, getting back in some sort of physical shape, dealing with post surgical pain nearly a year after surgery that you find out may take a year to a year and a half - or never - to go away. 

I keep telling myself how much I have for which to be grateful. I am still alive and a year ago that was no sure thing. I have been blessed with the Gift of Life from someone who believed in organ donation and saved my life. I am happy about that.

But then the medications start to do what they do, and all the side effects you are warned about start rearing their ugly head. Emotional swings. And as time goes by, reality sets in about dealing with some of the more serious side effects. 

Being a transplant patient means we must endure a lot. Lots of pain, lots of blood tests, lots of being poked and prodded. A Bronchoscopy every 3 months for the first year post transplant. 

IV Infusions multiple times. Now injections to help raise my white blood count to an appropriate level and hope in the meantime I don't catch anything from anyone. I am more at risk now than I was post transplant. 

I should take it all in stride. Again, easier said than done. I trust my Transplant Team. They know their stuff and are monitoring me and taking action when appropriate. But there are those moments that just scare you as much as you were scared waiting to see if you'd get your transplant. I have faith most of the time. But then sometimes when I realize the challenges I am still facing, it hits me. And I get scared and anxious.

I am positive and grateful most of the time. But then when the next thing comes up that is serious enough it needs treating, anxiety sets in. Then I'll remember how knowledgeable and talented my Transplant Team is and I feel better. I ask lots of questions and the answers make sense. Then late at night, I worry. 

It's a roller coaster ride for sure. So many ups and downs, twists and turns. And it's a ride I'm not allowed to get off. I have to learn to live on the roller coaster. 

It's not like they didn't warn me. But sometimes knowing what could happen and then being faced with what IS happening is a whole different ballgame. But I'm working on it. Trying to be strong and learn to roll with the punches. I'm not very good at it, but I'm trying.

SUNDAY'S INSPIRATIONAL QUOTE & SONG" FOR THE DAY!

I love this quote. I have faced so many challenges that it would have been so easy to just give up. When I was told I needed a Lung Transplant to live, I went through a phase of thinking there was no way I could handle that. But I wanted life more. So I chose to fight. This quote speaks to me about my struggles both pre and post transplant.

11 Months Post Transplant

After my 2 Mile Walk!

"Bridge Over Troubled Waters"  - Simon & Garfunkel

SUNDAY'S INSPIRATIONAL QUOTE FOR THE DAY!

Yesterday it was 11 months to the day since I received my Lung Transplant. 11 Months. 30 more days and I hope to celebrate the One Year anniversary of receiving the Gift of Life. I have a bazillion tests over the next few weeks to check how things are at one year. I am expecting good news, since things have been going well so far. I am working hard on my exercise rehab and doing all the doctors require of me. I'll be counting the days until my one year anniversary like a child counts the days until Christmas and hoping all those tests will be the best presents I could get!