Sunday, July 20, 2014

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!







Friday, July 18, 2014

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, July 13, 2014

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


Sunday, July 6, 2014

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, June 22, 2014

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


Tuesday, June 17, 2014

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.



Friday, June 13, 2014

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.



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