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.
This quote really speaks to me, as I feel I must do exactly what it says: "That which I cannot." I must gather myself and find the courage to face my fears and find the strength to move forward through this Lung Transplant process. So I chose this quote today as it expresses exactly how I am feeling.
"When You Believe" - Mariah Carey & Whitney Houston
I wrote recently that I had gotten the call that I have officially been listed on the UNOS (United Network for Organ Sharing) waiting list. Well, a few days later, a letter from Loyola arrived in the mail and I couldn't imagine what it was for. Of course I opened it quickly and there it was - in writing - really real:
"This letter is to officially inform you that on 6/10/2014 you were placed on the UNOS (United Network for Organ Sharing) lung transplant waiting list." There was a lot more in the letter but seeing those words, in writing on paper made it so much more REAL! I have been working, fighting, and waiting for so long, to see it in writing made it really sink in. This is really real! I'm on the list! I can't believe it's true. No one could diagnose me. No one knows why I have this awful disease. The first transplant hospital denied me. But with the help of my doctor, I kept fighting. It's taken so much to get here I almost can't believe it's real. It's surreal. I can't believe this is my life. It's interesting how we adjust. You have a "new normal" and learn to live with that. I'm going to learn more about what my "Lung Allocation Score" means at the second Lung Transplant Education Class next week. I'll learn more about Accepting the Organ, Medications, and so much more. Then I'll have two different Support Groups to attend. So much to learn. They really put you through your paces. But for now, it's REALLY REAL! WOW!
STATISTICS
Although there have been advances in medical technology and donation, the demand for organ, eye and tissue donation still vastly exceeds the number of donors. For more information, read the summary below or create a detailed data report on the UNOS Web site.
-More than 122,000 men, women and children currently need lifesaving organ transplants.
-Every 10 minutes another name is added to the national organ transplant waiting list.
-An average of 18 people die each day from the lack of available organs for transplant.
-In 2013, there were 14,257 Organ Donors resulting in 28,953 organ transplants.
-In 2013, more than 47,000 corneas were transplanted.
-More than 1 million tissue transplants are done each year and the surgical need for tissue has been steadily rising.
-According to research, 98% of all adults have heard about organ donation and 86% have heard of tissue donation.
-90% of Americans say they support donation, but only 30% know the essential steps to take to be a donor.
Yesterday, along with my Mom, Brother and Niece I attended the first of two Lung Transplant Education Classes that I am required to take in preparation for a Lung Transplant.
It has been a long and difficult journey just to get accepted for a transplant and finally put on the Lung Transplant Waiting List. The class was 3 1/2 hours long and there is so much to learn it is overwhelming. We all have an idea of how organ transplantation works but there is so much more to it, you’d be amazed.
The Procurement Nurse conducting the class told us up front that this was going to be a lot of information that was not going to be sugar coated. We were getting the cold, hard facts about what we would be facing if we get a lung transplant. And it is a lot to take in.
OPTN (The Organ Procurement and Transplantation Network) oversees all organ transplants in the United States working on conjunction with UNOS (The United Network for Organ Sharing). Here is a link to both web sites where you can read more about how the two organizations work together in the process of organ procurement and donation.
The class was very detailed, explaining what indicators are considered in determining if a Lung Transplant should be an option in an individual’s situation. They explained much about the Thoracic Anatomy and how our lungs function and the other organs that are impacted by a transplant, the nerves involved and what can happen during surgery. They explained all the potential risks involved in having a transplant, and there are many.
We learned about the difference between a single lung transplant and a bilateral lung transplant. How the incisions are made and the actual procedure. We were told about how, following surgery, we would be intubated for a period of time under sedation, the chest tubes and their purpose. We learned about all the complications that can happen following surgery to each of us. It’s intimidating to say the least.
Learning about Organ Rejection and how to prevent it was so informative. Our bodies will NEVER recognize and accept our new organ(s) - NEVER! It will constantly be trying to attack and reject the new organ. This is why we will be taking so many anti-rejections medications FOR THE REST OF OUR LIVES!! In addition, because those anti-rejection medication suppress our immune systems, we are vulnerable to getting other things like infections. So we must take more medication to help prevent infections. We were told we will be taking somewhere between 40-50 pills every single day.
Taking our medications as instructed, ON SCHEDULE, is vital. If we are to take a medication at specific times of day or at certain intervals, we MUST do so or risk rejection. NO, oops I forgot so I’ll take it now.
We will have to monitor our own vital signs every single day; weighing ourselves, taking our temperature, taking our own blood pressure, spirometry, blood glucose testing. We must document this information every single day for the rest of our lives. This is how we can be on the lookout for early signs of rejection.
That’s the key. Catching signs of rejection early is so important because it can be treated. We must be detectives.
Following very specific dietary guidelines, avoiding certain foods altogether, cooking foods a certain way, washing produce.
It is, we were told, a strong likelihood that 8-9 out of 10 patients will go through a rejection episode; it’s inevitable. Catching it early is how to beat it back. So we must follow our instructions, be vigilant and never hesitate to contact our Transplant Coordinator even with the smallest question.
You can see why the Class was 3 1/2 hours long. I’ve barely scratched the surface of the information we got yesterday.
There is so much more to learn. Class #2 in two weeks and I am to attend two separate Support Group meetings as well.
So the process is underway. I am going to Pulmonary Rehab twice a week. I have the second Education Class to attend and the two Support Group meetings. And I wait.
It’s intimidating for sure. It will be the biggest challenge of my life, if I am lucky enough to get the call that they have lung(s) for me!
I’ve been writing a lot about waiting. Waiting for phone calls. Getting that phone call. Well, I’ve been waiting for yet another important call. The one that tells me that I am actually, officially ON the Lung Transplant List. I thought it would come late this week, maybe even next week.
Well, today, Tuesday, June 10th at 12:58PM, THE call came. I am OFFICIALLY ON the Lung Transplant List! This has been a long, difficult, emotional and challenging journey to get to this point so when I got the news, I burst into tears! I am overjoyed to have this chance at the gift of life.
I have overcome so many obstacles to get to this point and I am proud of that! This hasn’t been easy and being turned down by the first Transplant Hospital made the journey even longer and more difficult.
Trying to live with the knowledge that if you don’t get a lung transplant that you are out of options. Let’s just say it - I would die - is very hard. There is no road map to tell you how to live with this information.
So you fight. You fight hard. I am blessed with a doctor who fought hard FOR me! He sent me to Mayo where I was actually diagnosed and told I needed a transplant. He’s the doctor that got on the phone and started calling the only two hospitals here in the Chicago area that do Lung Transplants. He never gave up fighting for me. Never. When the first hospital turned me down, he got feisty and started calling the other hospital and nagging them to take a look at me at least. I owe him everything.
Getting on the Transplant List was not an easy task. It was incredibly hard in fact. What I have had to go through - the testing - is demanding to say the least. SO many tests. But I complied and did whatever they asked of me. It wasn’t easy. But I did it. All the time, never knowing if I would be accepted.
I Blogged recently that the Call came that said they would accept me for a transplant but I still had more testing to do before they would actually put me on the list. So I went at it again. More tests, Faxing reports. Then wait - again - for that other call.
Today that Call came! I am officially on the waiting list! If I thought this has been a difficult journey, well now the hard part begins. Now we wait. I am told waiting for your organ can be the most difficult part of the journey. I have no idea how long I will have to wait. The truth is I may never get my new lungs. But I refuse to believe that! I believe I will get lungs. I pray it will be sooner rather than later.
The hard part now begins. Now we wait. But today I am on the list and for now my family is celebrating this chance at life I have been given!
“I learned that courage was not the absence of fear, but the triumph over it. The brave man is not he who does not feel afraid, but he who conquers that fear.”
So this is it. The last Phase of Transplant Evaluation is today. I have to repeat one blood test that was done when I was in the hospital; I have to have an Arterial Blood Gas done; I have to get the second in the series of 3 Hepatitis B Shots and I have 4 Blood draws for some antibody testing. Once the results of all these tests are in, I will be put on the actual Transplant Waiting List and told where on the list I stand. One of the blood tests has to be sent out to a special lab so it could be a week to 10 days before the results are in, so I likely won't get the information until then. More waiting. But after all the testing I have been through, this is it. The last of what I need to have done to get put on the Transplant Waiting List. If I only take into account the Evaluation Process I have gone through with Loyola, which began back on April 1st, this has been a long and stressful process - two months just to get to today. Add a few more weeks for the lab test results and we're closer to two and half months. This really began back in November, so it's been 6 1/2 months to get today, and as I've gone through this process, my condition has continued to worsen. It still is. I'm fighting. I'm doing whatever the doctors tell me to do to get a lung transplant. I have to do Pulmonary Rehab twice a week from now until I get a lung transplant. I have to take my medications. I have to follow a special diet to try to lose some of the weight I gained while taking high doses of Prednisone. I have to have family members commit, in writing, to being my Primary and Secondary care givers. We have to attend 2 Lung Transplant Education Classes with my Primary & Secondary Care Givers and any family that wants to attend. We(Care Givers & Family) have to attend 2 different Lung Transplant Support Groups (one geared toward patients like me who are still waiting for their transplant; and one geared more toward patients who have already had their transplant). This has been a VERY long journey and it's nowhere near over. This is just Phase I. I am waiting for Phase I to end; to get that call that says "You are on the list" and tell me how high on the list I am. Then Phase II begins. That's what I am told is the hardest part; waiting for the call to come that your organs have been procured. But that can't happen until we finish this first Phase. So this is it! Let's get on with it. Take my blood, give me my shot and get me on that list!
This is hard. My life with IC was hard enough as anyone living with it knows. I had worked very hard to learn to live with my IC and find coping skills, volunteer, advocate for others. Then out of the blue for no reason anyone can determine, I came down with this incurable lung disease of unknown origin - Idiopathic Bronchiolitis Obliterans. How did this happen? We'll never know. And I really have stopped asking that particular question. But nonetheless, the thing that hits me smack in face every single day is - this is hard. The good news is I have been accepted for a lung transplant. I still have a few lab tests to be done before I actually get put on the waiting list and told where on that list I am. So I am anxious for that to happen. Pulmonary Rehab is hard. I began last week and must go twice a week for as long as it takes to get a lung transplant. The doctors want me to regain as much conditioning as possible before I get a transplant so that I will be as strong as I can possibly be for the surgery and post surgery rehab. Again, hard. But I am committed. I actually look forward to regaining some of the strength I've lost since becoming sick. All the side effects of all the medications I am taking are hard to deal with. They mess you up in so many ways. My sleep has been effected since this all started and there are many nights I don't sleep at all or don't fall asleep until 3-4AM. That was last night. When that happens, the next day is just awful. Aside from feeling so tired from not sleeping it impacts the symptoms of my disease, making me more short of breath and weak. This is hard. It's a roller coaster of emotions and physical symptoms. My "good" days are not really good but a good day is better than a bad day. A bad day is the worst, with my symptoms as bad as they can be and finding it difficult to stay awake. Which then impacts my ability to sleep at night. So it's a vicious cycle. "Good" days and "Bad" days; sleep one night; none the next. This week I have rehab on Tuesday and Thursday and multiple lab appointments on Wednesday which, when the results are in, will finally get me placed on the transplant list and tell me where - or how high - on the list I am. My IC continues to be a never ending struggle, made all the more challenging by this lung disease. I have to find a way to learn to deal with all of this. But, it's a lot. I know even when I get on the transplant list, I have no way of knowing when, or even if, I will ever get lungs. Waiting, they tell us, is the hardest part of being a transplant patient. You never know when the call will come, if ever. I met a man at rehab last week who has been on the list for 10 months; he's still waiting. And still going to rehab so he can be ready when he gets his call. I wished him well. This is a journey for sure. And yes, this is hard. I have a lot of support who never give up on me when I feel weak. This is hard, but one day at a time and slowly but surely, I will find a way to get through it.
