SUNDAY'S INSPIRATIONAL QUOTE & SONG FOR THE DAY!

"The secret of health for both mind and body is not to mourn for the past, not to worry about the future, or not to anticipate troubles, but to live the present moment wisely and earnestly."

  - Buddha

"Up on the Roof" - James Taylor

THE UPS & DOWNS OF A TRANSPLANT PATIENT!

It’s a long (to say the least) and winding road to becoming a Transplant Patient. I cannot believe August will be here next week and just since November, what I consider a short period of time,  I got so sick that I was told I needed a Lung Transplant or I was out of options.

So your doctor goes into overdrive trying to get you evaluated to see if the either of the only two hospitals where I live will even consider accepting me as a transplant candidate. It’s not enough to just NEED a transplant. Nope. You’ve got to EARN your spot and it isn’t easy. 

Thus begins the Ups & Downs of being a Transplant Patient. Months of trying to even get a proper diagnosis. Then realizing that I am facing life and death. Better buckle up; this is going to be a bumpy ride.

Already being on Disability for another incurable, painful, difficult to treat medical condition, I thought I had figured out how to navigate being a patient. Learned how to cope with chronic disease. This was a whole new deal.

Emotions run the gamut from the depths of being told you will die unless you get a lung transplant to tears of joy when the second hospital finally, finally says they will accept you for a transplant and you are now officially listed with UNOS for a Lung Transplant! 

The Transplant Teams are very honest about the journey you are about to take. Brutally honest. It’s scary. So there goes that roller coaster again. Can I please just get off and take a break? 

There are no breaks. There is always a test or doctor appointment, Rehab and more to deal with. But I am now part of a new community of others just like me. We are all waiting for a Transplant. I have had the pleasure of meeting other Lung Transplant Candidates and you feel a kinship. Just like I did when I was diagnosed with IC and began writing this Blog, being an IC Patient Advocate; we feel a connection to those facing the same thing we face. We are somehow connected.

We have been told to expect “false alarms” when it comes to having a transplant. We’ll get that call that we’ve been waiting for, go to the hospital, get prepped for surgery only to find at the last minute there is something unacceptable about the organ that was to be donated and the transplant is cancelled and we must be sent home. That just happened to a new Lung Transplant friend of mine. Talk about the Ups & Downs! All in one day! That’s rough!

Then there’s the nice man I met at Rehab who sat next to me working out during class. We chatted a little and my Mother and his Wife would have tea together while we were in class. I learned he’d been waiting 10 months for his Lung Transplant. I was absent from Rehab for 1 week for a procedure and when I returned, he wasn’t there. Could it be? YES! He got his transplant and that’s why he’s not at Rehab!

I hardly know him, but I was overjoyed for him and his family! I hope to hear how he is doing and get a good report. 

I have to have yet another test on Monday and a doctor appointment at two different locations. These are exhausting days for me but I will do what I must. I’m trying to learn to roll with the punches; it’s a work in progress.

Yes, there are many Ups and Downs in the life of a Transplant Patient. That’s true of many people with many illnesses. But the journey through Transplant it unique, I think.

We know there is a way save us, but can we get it in time? So we wait and we ride that roller coaster of Ups & Downs and hold on tight to our support team!

I never liked roller coasters or any rides at the amusement park. They make me sick. That’s nothing new. So you can imagine being on a roller coaster that is a Transplant Patient for someone like me is no small feat. But I’m working on it. I hate waiting, but wait I must. 

Buckle up, the roller coaster is ready to take off - again - and the Ups and Downs are ever present!

AN EXTRA SPECIAL POST!

Today is my Birthday. A milestone usually marked with lots of fun, celebration, cards, presents, party and friends and family.

This year for me it is different. Today is my 59th Birthday. I’m not telling you this searching for all those things I mentioned above that generally come with one’s birthday. 

No, it’s my Birthday and it’s a milestone that six months ago I wasn’t sure I would see. After being diagnosed with Idiopathic Bronchiolitis Obliterans back in February and told I needed a Lung Transplant or I was out of options, I wasn’t so sure I’d be here today.

I am. So I celebrate life. I celebrate being accepted for a Lung Transplant. I celebrate the love and support of everyone who is helping me on this journey.

Today is my Birthday. And I have everything; except the most important present of all - new lungs - that I could want for now. 

So I will celebrate my Birthday today with my family albeit very low key. And when I blow out that imaginary candle on my cake (no candles around me with my oxygen!) my quiet wish will be that I am here a year from now to celebrate turning 60 with a new set of lungs!

Close your eyes, blow out that imaginary candle and wish my wish comes true!

MY BLOG HAS HAD A CHANGE OF TUNE!

This was supposed to be a Blog about my IC illness, and it was until the beginning of this year. My journey through living with life altering IC has taken me places I didn't think I could go but we do what we must and try to move forward. Learning to live with chronic pain and illness isn't easy, but I was doing it. Even though I had to stop working because of my IC, I felt like I was handling it; doing what I needed to manage my disease and try to help others.

Well, clearly this Blog has morphed into the story of my lung disease. Being diagnosed with a rare disease that no one could figure out was life altering. My IC friends must be feeling neglected, but when something like this happens, the road takes a sharp turn and you can crash and burn, or you can follow the road and see where it leads.

When I was finally diagnosed with Bronchiolitis Obliterans and told I needed a Lung Transplant to survive I was beyond shocked! And my writing ground to a halt. This Blog was never intended to be about self-pity but a sharing of my journey, encouragement, and support.

I wanted to keep writing, but even doing this takes energy I rarely have. Deconditioning and side effects from medications make my hands tremble and shake which makes it difficult; medication side effects also now make it difficult to concentrate and have affected my short term memory some. It literally takes energy to sit up with my computer and actually write a Blog. Plus, it has been a journey to process this medical news and figure out how to handle it.

Three stays in the hospital and a trip to Mayo also interfered with posting. Then trying to get accepted for a Lung Transplant has been like preparing to climb Mt. Everest. The testing and demands made of Transplant Candidates is truly monumental. One hospital turned me down. I was running out of options. Finally being accepted by Loyola and getting that letter that says I am Officially listed in the UNOS system and given my Lung Allocation Score gave me hope.

Based on my most recent Pulmonary Function Test last Friday, my condition is continuing to worsen, but the good news is that increased my Lung Allocation Score which pushes me up the system and hopefully will mean I get my transplant sooner rather than later.

But I wait. I go to Rehab and keep my doctor appointments, which are key to making sure your UNOS score stays Active. I have a wonderful family that is supporting me and going out of their way to help me. I have wonderful friends who support me. All of you help me in ways big and small. I am fighting, but there are ups and downs. Medication side effects, being permanently attached to oxygen. It truly "takes a village" to get me anywhere. It's been a learning experience but we've kind of figured it out and are getting "systems" in place for all the different things I must deal with.

Calling the Fire Department, Police Department, Electric Company to let them know there is a person living in the house on 24/7 oxygen is recommended so in an emergency they know where to go first to help that person. Who knew?

I could go on. But this Blog that started out to Support my friends in the IC Community is now mostly focused on my battle to get a Lung Transplant. My IC isn't happy about this either which is another challenge I'm trying to deal with.

Yes, this Blog has had a Change of Tune I'd say.  I still want to share my journey and will do so whenever I can manage.

Most days, I feel a bit like Wile E. Coyote who never sees it coming!

SUNDAY'S INSPIRATIONAL QUOTE & SONG FOR THE DAY!

Today's quote really spoke to me; it is exactly how I am feeling. So I wanted to share it with everyone. I am doing this every day now. 

Courage is simply the willingness 

to be afraid and act anyway. 

- Robert Anthony

I Dreamed There Was No War - 

The Eagles

NO ONE SAID THIS WOULD BE EASY!

I need a Lung Transplant. I’ve written about this before. But I have multiple other health challenges, so many that the only other hospital here where I live that does lung transplants turned me down.

If it weren’t for my personal Pulmonologist calling Loyola and never giving up fighting to get them to evaluate me, I wouldn’t be here. It was such a long, complicated, complex journey, but I was accepted and I am finally on the UNOS Transplant List! Now I have a chance. All I want is a chance. You have no chance if you can’t get on the list. So now that I’m on the list, at least I have a chance! No one could ask for more.

So one would think I sit at home waiting for the call to come. If only. The Transplant Team keeps you very busy. I haven’t written a Blog in so long because I haven’t felt up to it or had the energy. I am required to attend Pulmonary Rehab twice a week. What it takes to get me up, dressed, fed, and ready to go is no small feat. Everything takes twice as long now that my lungs are so bad. By the time all that is accomplished, I get to Rehab and get back home, settled in and have lunch, over half the day is gone and I’m exhausted. I almost always fall asleep at that point.

I’ve been required to attend several different Lung Transplant Education Classes, so add those to having to go to Rehab.

I just had surgery last Wednesday that the Transplant Team wanted. I have a swallowing dysfunction that causes me aspirate thin liquids. So since being diagnosed I’ve been adding that thickening powder to all my drinks. It works great. But the Transplant Team is very concerned about me aspirating into a newly transplanted lung. If I did that, the odds are high that I would kill the new lung and we don’t want that. So their work around was to put in a feeding tube. So I had that done last week. I am still recovering and it’s going slow, but moving in the right direction. Today is better than yesterday so I’ll take it. I have to see the surgeon who did it in two weeks.  It’s not in it’s final “form”. Right now I have a tube over a foot long, but in several months, once it becomes a real “part” of my body, they can shorten/remove the tube and I might even just have a cap. I look forward to that day. We have to flush the tube every day and clean it. Today I even took a shower! 

Having to have surgery when you are suffering from a life threatening lung disease is no small feat. It’s been rough going. But I’m glad it’s over and I’m recovering. I must see the surgeon in two weeks, so I must call to see about making that appointment. They never tell you that until after your surgery (on the Friday of the 4th of July weekend!), so I have to wait until Monday to call, and then you can never get in to see the doctor when the doctor tells you to come see him!

Getting a transplant isn’t easy. It shouldn’t be. But, boy, what I have been through to get to this point; well, honestly I feel by the time I get mine (thinking positively), I feel I will have earned it!

So, whatever I am asked to do, I will do. At least so far, I haven’t hit anything that would make me say - no, that’s too much and we’ve reached a place I no longer wish to go to. So far, I’m game for whatever they’ve thrown at me.

Don’t get me wrong. It’s all very scary, intimidating, overwhelming. I need to dig deep each time I am faced with another hurdle. So far I’ve managed to do that.

Now, I focus on recovering from this latest surgery to put in the feeding tube. I have Rehab to resume in about a week (per doctor’s orders, wants me to skip this week and even then resume slowly and with caution); a few more classes and keeping up with regularly scheduled doctor appointments.

No one ever said this would be easy!

Me in the hospital after my feeding tube surgery!

SUNDAY'S INSPIRATIONAL QUOTE & SONG FOR THE DAY!

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

IT'S REALLY REAL!

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.

THE BIGGEST CHALLENGE OF MY LIFE!

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.

http://optn.transplant.hrsa.gov/optn/

http://www.unos.org/about/index.php

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!

"LET IT BE" - The Beatles

WAITING FOR PHONE CALLS!

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!

http://www.loyolamedicine.org/transplant/lung

SUNDAY'S INSPIRATIONAL QUOTE & SONG FOR THE DAY!

“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.” 

― Nelson Mandela

"HAPPY" - Pharrell Williams

THIS IS IT!

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!

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.

My Lung Pillow Sent by a Dear Friend

"I Didn't Know My Own Strength" - Whitney Houston

SUNDAY'S INSPIRATIONAL QUOTE & SONG FOR THE DAY!

I never would have thought I’d be using a quote from John Wayne, but after being told I have been accepted for a Lung Transplant, I need to dig deep to find the courage to face all this brings with it. I liked this quote; it’s how I feel.

Courage is being scared to death... 

and saddling up anyway.

 ~John Wayne

"Brave" - Idina Menzel

THE CALL FINALLY CAME!

I met the Transplant Surgeon on Wednesday afternoon. We really liked him and were very impressed. If you must have a Lung Transplant, this is the guy you want doing it. I’ve had all the tests and this was the last piece of the puzzle so the entire Transplant Team could meet to review my case and decide whether to accept me or not. I was told I would get a call on Friday (yesterday, May 23rd) between 3-5PM. So as I wrote in a previous Blog, I waited for the two days to pass and the call to come.

Finally, on Friday, May 23rd at 3:45PM the call came. I knew it was them by the phone number, so I knew this was it. My hands were shaking as I answered the phone to hear the voice of my Transplant Coordinator.

She tells me the Team met and discussed my case. And the decision was YES; they will accept me for Transplant and put me on the list! I burst into tears! I have hit so many road blocks since I came down with this awful disease, and this was by no means a sure thing, to finally be told they would accept me for transplant was just so overwhelming and now I have a shot at life!

Life! I want more of it. There are no guarantees when it comes to transplantation, and it is certainly a complex health situation to manage. But without it, I have no chance. With it, I have a chance. 

A chance to see my niece and nephews finish college, maybe get married. See my nephew and his wife have their baby this October. A chance is all anyone can ask for. I now have a chance.

There are still some tests I have to have - mostly blood work - before I will actually get put on the list. But that should not take too long and soon I should be on the list. The Transplant Surgeon I met with on Wednesday told me I was so sick, I would likely be very high on the list. I don’t know how that will play out, so that remains to be seen.

I am grateful and overwhelmed by the outpouring of love and support from my family, friends and loved ones since I started sharing the good news.

There is a long and challenging journey ahead of me. It won’t be easy. But for now, we celebrate.

The call finally came and they said YES!

WAITING!

I’m waiting. So it’s been over two weeks since I was in the hospital being run through massive testing to be evaluated to see if I will be accepted as a Transplant candidate. When I was discharged, I was given a list of out patient tests that I also needed to complete on my own and have Fax’d to the Transplant Coordinator that the team had to have before they will meet to discuss my case and whether or not to accept me.

I also am required to meet with the Transplant Surgeon before the team meets. And there’s the hold up. He’s so busy getting an appointment has been tough. I finally have one next week, but they are TRYING to see if there is any way to squeeze me in this week so the team can discuss my case at their weekly meeting this Friday instead of next Friday. As each day passes and that doesn’t happen, i figure it will be next week when I meet him.

I don’t know how soon after the Transplant Team meets and makes their decision that they will notify me. My hope is that it would be the same day. I’m going to call and ask my Coordinator that question. More waiting.

Waiting. Lots and lots of waiting. So many tests. One blood test I need to repeat. Lung Transplant Education Classes I must attend. A series of shots I must get. 

And I wait. And the waiting won’t stop even when I get an answer. If I am accepted and put on the Transplant list, a new level of waiting begins. That’s when I have to wait for lungs to become available that are a match for me. That waiting could be quite a long time. I better get used to waiting.

Right now I just want to be accepted and put on the list. This has been such a long and drawn out process that has included a trip to the Mayo Clinic and three hospitalizations. 

So I wait. Hoping I get the answer I want; the answer I NEED at least by next Friday.

INSPIRATIONAL QUOTE & SONG FOR MOTHER'S DAY!

My Mother has always been there for me and my brothers. Always. Whatever advice, support, love or help we needed she has been there.

But for me, in recent years, Mom has had to not only be my Mom, but my chauffeur, chef, primary care giver and all around nurse and source of support. If anyone ever deserved recognition on Mother's Day, it's my Mom. I am blessed and I do not take it for granted. So Sunday's Inspirational Quote and Song for the Day today is for Mother's Day and dedicated to my "Sainted Mother"!

 “A mother is the truest friend we have, when trials heavy and sudden fall upon us; when adversity takes the place of prosperity; when friends desert us; when trouble thickens around us, still will she cling to us, and endeavor by her kind precepts and counsels to dissipate the clouds of darkness, and cause peace to return to our hearts.” 

― 

Washington Irving

"I Turn To You" - Christina Aguilera

THERE ARE DOCTORS THAT TAKE IC SERIOUSLY!

I haven't been writing a lot lately, but when I have it's often been about my battle for a Lung Transplant and not a lot about my IC. This Blog was started as you all know because after being diagnosed with IC I became a passionate patient advocate, ICA volunteer, Fundraiser and because I wanted to help raise awareness about IC.

All of that has had to take a back seat since being diagnosed with end stage lung disease and told my only option was a lung transplant. My life was turned upside down in the blink of an eye. All my energy and focus have been going toward my lung disease and 3 hospital stays. Trying to get accepted for a lung transplant. So I have not been actively participating or writing about my IC.

Recently, if you've been following me, you know I just spent 10 days in the hospital being evaluated for transplant. The process is still ongoing but as I have gone through this process, been admitted to the hospital on 3 separate occasions, something jumped out at me that those of us in the IC Community often talk about.

Yes, it's true: I realized I knew more about IC than MOST of the doctors or nurses that I dealt with in the last 6 months. In most cases, though not all, I knew more than they did. This was not a surprise and we all often talk about this.

But here's the thing. This ended up NOT being a negative experience. As an educated IC patient, I was able to communicate with the medical staff clearly about my condition and what my special needs were while I had to be in the hospital. I have to self-catheterize regularly and I needed supplies to be able to do so.

But I cannot say enough about how seriously every single doctor and nurse took my IC. Every single doctor I came in contact with wanted to be sure my IC was being properly taken care of. They didn't talk down to me and asked me intelligent questions and took it very seriously. The staff bent over backwards to get me catheters and supplies so that I was able to continue to self-catheterize while I was in the hospital and still be comfortable.

I was particularly impressed with the Transplant Team's interest and how seriously they took my IC. They want to insure that if I am accepted as a transplant candidate that they can manage my IC and keep my comfortable.

I was so pleased to see so much interest, care and concern for me and my IC as I've gone through this process. My IC is not happy these days but there isn't much I can do about it as I struggle with my lung disease. I manage it as best I can.

But it seems we hear so many negative stories - and I know they are out there - about the lack of knowledge about IC. I felt it was important to write about my experience and how positive it has been. 

I think this is evidence that being an educated patient pays big dividends. I was able to talk to them about IC with confidence, knowledge and expertise. At no time was I unable to answer a question about IC and it's treatments, research and why or why not I was not being treated a certain way. They took me seriously because it was clear I was a knowledgeable patient. 

So if ever there was a case to be made for getting educated, my situation should be it. I have seen more doctors than I have been able to keep count of - something like 20 at this point. Each was impressed with my knowledge of my IC and my medical condition, my history, medications I was taking, allergies to medications, ability to talk about my reactions to medications and more. 

We can help doctors understand IC if we ourselves are educated. Be your own best advocate and keep good records on your medical history, medications, surgeries etc. Be able to talk about IC with confidence, knowledge and facts. 

Here's a link to the ICA's Healthcare Provider Toolkit. This is a great tool you can give to your doctor to help with IC Education. Some of the tools even offer the 

CME/CEU/CE credit for physicians, physicians’ assistants, nurses, pharmacists, and other providers. 

http://www.ichelp.org/page.aspx?pid=613

There ARE doctors out there that take IC seriously! Let's help more do the same! 

WHAT IT TAKES TO GET A TRANSPLANT!

I have been offline for over 10 days because I have been in the hospital because of my End Stage Lung Disease/Bronchiolitis Obliterans. Finally Loyola Medical Center agreed to Evaluate me for Transplant and I was transferred from my hospital to Loyola where I spent a full week going through the most monumental series of tests; it blew my mind.

Part of the process was also to get me stepped down, in a medically supervised situation, to a lower dose of Prednisone. In order to be a transplant candidate it is required that a candidate be on no more than 10mg of Prednisone for an extended period of time. I have been on a super high dose to manage my symptoms and weaning had proven difficult. So Loyola felt if it was to be done, it needed to be done in the hospital. So that was also part of the process.

My Work-up included the following:

-Blood Tests (30 vials of blood were drawn): Complete Blood Count, Blood Type; Electrolytes, kidney and liver functions, lipid profile, blood sugar, hepatitis and more

-Ventilation Perfusion Scan

-Angiogram #1 where a small catheter was inserted into the groin and checked the blood pressure in my heart.  They wanted to sedate me (narcotics!!) and I wouldn't let them. Said just give me a local and I'll be fine. SO glad I did this, as I was done faster and no puking. I felt like I should get a Gold Star for that procedure!

-Angiogram #2 where a small catheter is inserted in the wrist and checks the coronary arteries for blockages. Again, they wanted to sedate me and I wouldn’t let them! Gold Star #2! Both doctors who did these procedures were impressed I was able to do this and I am proud of myself for doing so!

-MUGA Scan http://en.wikipedia.org/wiki/Radionuclide_angiography

-Chest X-Ray

-Chest CT with Dye Contrast

-Echo cardiogram

-TB Test

-Six Minute Walk Test

-Nasal Swabs

-Consultations with: Transplant Dietitian; Psychologist, Social Worker

This was above and beyond the medically supervised controlled step down of my dose of Prednisone. 

It was a tough week but well worth it if it gets me new lungs! I still have more to do for the Transplant Team in order to be considered. A series of out-patient tests they require I have done. I must have a Pap Test; Mammogram; Bone Density Scan; Dental Cleaning and Exam. I needed to have my Colonoscopy and Upper Endoscopy test results Fax’d to the Transplant Team. I am required to start Pulmonary Rehabilitation for 12 weeks, 3 days a week to try to get back into a decent fitness level (within reason given the limitations of my disease) because I am so de-conditioned from being so sick for 6 months.

In addition, the Transplant Doctors would not discharge me until I had a Bipap machine at home. They had me use one in the hospital and want me on one when I sleep. This is not the same as a C-Pap but very similar. I didn’t think I’d be able to sleep with such a machine, but once I was properly shown how to use it and select a comfortable nasal cannula I was pleasantly surprised to discover how great it is. It helps me sleep comfortably, and this was a huge problem before getting the Bipap! Not to mention, they tell me it’s good for me. I’ll take it. Just to be able to sleep again is such a relief!

I am REQUIRED to have a designated Primary Care Giver and Secondary Care Giver who must not just say they will do this, but sign a form committing to doing so that I give to the Transplant Team. These Care Givers then MUST attend a series of Transplant Education Classes with me.

This is no easy process to be sure. The Transplant Team will wait for ALL the results of everything and once they have them, then they will meet to discuss my case and decide if they will accept me for transplant. I do not expect this to happen for about 3-4 weeks but that is just my guess.

So I schedule tests, make phone calls and I wait. I am doing every single thing I can to get accepted. Bring it on I say! If it means I can get Lungs, I’ll jump through whatever hoops they ask me to! 

It's astonishing what is required to be accepted as a transplant candidate. I never thought it was simple, but to see what goes into it is eye opening indeed. 

My Bipap Machine