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