IT'S A VERY HAPPY NEW YEAR!

I  cannot believe that it is December 31, 2014. Where has the year gone? When I came down with this mysterious lung disease in November 2013, I thought it was a cold and it would be a pain in the neck but I'd be fine in a week or so. HA!

Time moves at a different pace - or it seemingly does - when you get seriously ill. As my condition continued to decline and we couldn't figure out what was wrong with me, time seemed to stand still. I was miserable, finding it harder and harder to breathe, we could get no answers and so time seemed to drag on.

After our trip to the Mayo Clinic and finally getting a diagnosis, time started to feel like it was moving so fast and I was going to run out of it. My disease was incurable. They had no idea how I got it, but the only way to survive was to have a Lung Transplant! Shock is an understatement. Deer in the headlights is how I would describe my reaction to this news.

Being told you need a Lung Transplant and actually getting one are two completely different things. Just because you need one, doesn't mean you're going to get one. One hospital turned me down, saying I was too complicated and they wouldn't take me on! WHAT?? Isn't that what you do? Give people transplants that need them? Well, doing a little research one finds out that certain hospitals only take on cases they know will have good outcomes so their statistics stay up high, which can impact their federal funding.

I was very lucky that my doctor fought for me and he got the second hospital to at least meet with me. They agreed to evaluate me and next thing I knew they had accepted me into their program as a transplant candidate. I was listed with UNOS on June 10, 2014, a date I will never forget. Now the waiting begins for an organ to become available. Time is ticking away and it feels like it's moving at lightning speed because I'm running out of time as I get sicker and sicker. And yet, waiting is slow agony as well. You never know if an organ is going to become available for you. Will I get my lung in time? I've been told I'm running out of time.

Finally, the call came and I got my Lung Transplant! It's my Re-Birthday - November 3, 2014! I have a new lease on life.  Having a transplant isn't an easy thing and it's not the perfect answer but it is a life saving procedure if all goes well. There have been bumps in the post transplant road, but we are told to expect that. The Transplant Team knows how to handle them. So I must constantly monitor myself for any signs that my body is rejecting my lung.

The thing about transplants is that your body will NEVER, and I mean NEVER, accept the new organ as your own. It is constantly going to try to reject it and so fighting rejection is something we must do for the rest of our lives. I take about 60 pills every single day, a nebulizer treatment, I must check my vital signs every day and record them, I must do my Spirometry and right now, work on my physical therapy to regain the strength I lost while sick.

I look at time differently now. It's precious. I don't take a single minute for granted. I said before I got my transplant that all I wanted was more time. I'd take what I could get, but I hadn't had enough time yet. I have a wonderful family and I want more time with them.

For now, I've been given that extra time and I am so grateful. As everyone celebrates the New Year, I will be celebrating too, but in a different way. My New Year is also my New Life! The fact that I am still here, writing this Blog, enjoying my family and able to breathe on my own is truly a miracle!

I certainly will be celebrating the New Year, but not like most of you. I will be taking care of myself and my lung and probably be in bed when the clock strikes Midnight. 

So from someone who is truly happy to be celebrating the coming of the new year, I wish everyone a very HAPPY NEW YEAR!

Auld Lang Syne - Mairi Campbell

IT'S A MERRY CHRISTMAS!

I'm 7 weeks post transplant and things are going about as expected for a transplant patient, given we know there will be bumps in the road to recovery, but we just don't know what those bumps will be.

I've had my share. Side effects from medications, wound issues from the incision, pain, and we're waiting to get culture results to see if I have a lung infection. I'm on an antibiotic because the preliminary tests show something so they don't mess around when it comes to transplant and the Cipro was started immediately. 

This Christmas is so special. A year ago, I was sick. I had come down with this strange lung disease but we didn't know what it was or how to treat it. Now a year later, I've been blessed to have gotten my lung transplant and I am on the road to recovery. 

Like I said, there are bumps in the road to recovery. I had to be re-admitted to the hospital due to some medication side effects back in mid November. Now we're fighting what looks like it might be a bacterial infection; we'll see. 

But, this Christmas is not for reflecting on what I almost lost this past year but instead what I gained - my life. I am working on my rehab so I can get my fitness level back. I can breathe without oxygen. I am so grateful for the Loyola Transplant Team who got my my Lung and continue to take care of me even after discharge. 

Christmas is a time for being thankful and reflecting on the year gone by. I'm glad it's gone by. I do not wish to repeat it. I am so thankful for my new lung and the fact that I am on my way to recovery. My family has helped me more than I can say. There is just so much for which to be thankful that I run out of words.

I am blessed and thankful. My Christmas gift to my family is a huge hug and my love for standing by me. I could not have done any of this without each and every one of you!

This Picture Is Truly a Miracle!

I ALREADY GOT WHAT I WANTED FOR CHRISTMAS!

The Christmas Season is upon us. I can't believe December is half over and we are rapidly approaching 2015! I don't know what happened to the past year. My life changed forever but not in a way one wishes for.

It's been over a year since I developed the mysterious lung disease that would mean I needed a lung transplant. I still can't believe that this happened to me. Such a mysterious and rare disease requiring a lung transplant; where the heck did I get THAT?!

Idiopathic Bronchiolitis Obliterans; not something I ever expected to hear of let alone get! The doctors still don't understand how or where I got it. They never will and I guess it will remain a mystery from here on out.

As we approach Christmas, I am still recovering from my life saving lung transplant. I still can't believe I got my transplant! I seriously still find it hard to believe my lung came and I got my transplant! It is truly a blessing and a miracle. Just having doctors that can perform such a complicated surgery as a lung transplant is a miracle. And I got one of the best in Illinois. I am so lucky. My Christmas present arrived early and I cannot express how grateful I am.

We are going to have a VERY low key Christmas this year. No presents and just one of my brothers and his wife and my niece. My other brother and his family have issues and they, too, will be having a low key Christmas. We'll get to see them at some point and that's all that matters. All I want for Christmas I already got. I got my lung and that means if I take care of it, follow doctor's orders, take my meds and do all I'm told, then I get to live and be with my family. All I want is to sit with my family, share memories of Christmases past, enjoy our tree and rest. 

So I have many to thank for getting here this Christmas: 

-I have my family to thank for so much I can't even list it all, but without each and every one of them, this would not have been possible.
-I have so many friends to thank for calling, visiting, sending cards and gifts to help support me as I went through the process of trying to get on the list and then supporting and encouraging me while I waited for my lung.
-So many friends and neighbors who have driven us to countless appointments and brought us meals-this was so much help I cannot say, especially for my Mom.
-I have Loyola University's Transplant Team to thank for even taking my case when no one else would and saving my life! They are the "A" Team and I had a top notch surgeon, that things could not have gone better than they did. I was able to meet and shake the hand of the surgeon who saved my life. That will move a person to tears, let me tell you.
-Finally I have to thank the family of the individual who gave me the gift of life and donated the lung I received. I have no idea who they are but I am grateful beyond words. One day, Loyola will help me anonymously thank them and if they want to respond they will; if not that's OK too. I just want them to know how grateful I am.

This will be a very special Christmas; the best ever really. I am doing well after my transplant and we are so grateful. 

I already got what I wanted for Christmas - my family did too. I got my transplant. We will raise our glasses (mine filled with water) in a toast to my new lung and life. 

I have much joy in my heart to share with so many. Take time to be with those you love; you never know how much time you have. We will be enjoying Christmas in a whole different way this year; grateful for the gift of life!

MERRY CHRISTMAS

& 

HAPPY & HEALTHY NEW YEAR!

MY EARLY CHRISTMAS PRESENT!

I just realized it's been almost two weeks since I Blogged! It's been a BUSY two weeks; so much so that the days get away from me. There is so much to do every single day to take care of my post transplant needs, that it seems we do nothing else all day long but take care of me.

The morning ritual is the most complex. I am required to take my vitals every single day: weight, temperature, blood pressure, blood sugar, spirometry (not fun), medications. In addition, there is a place on my incision that is not healing well at all and causing me a lot of pain.  This requires wound care twice a day. My Mom has to put this special prescription ointment into the wound and that debrides the wound, then she has to pack it with a damp piece of gauze followed by covering it with a dry piece of gauze. In the morning, I must get in the shower so that the wound can be showered clean before being re-dressed. We have to change the dressing twice a day, although I do not have to shower in the afternoon. The wound care nurses at the hospital said if it does not look better this coming week, then I will have to see the surgeon. Fingers crossed we see some improvement!

The meds must be taken 4 times a day, so I must set alarms so that I don't miss taking any of my meds, many of which must be taken at very specific times - no excuses - (14 pills 4 times a day - close to 60 pills every day)!

There is at home physical therapy twice a week, but I am also expected to do my p.t. every day, twice a day - if I can find time for that second time that is! There is a medication that I must take via nebulizer, which requires mixing the medication from the vials and then using the nebulizer to administer the medication. This is not for my breathing, but one of the medications most transplant patients take is an anti-fungal, however, the one I was taking caused my liver enzymes to increase to dangerous levels, so we had to stop that medication and switch to a different one. The only other one happens to be this one that you take via nebulizer. It tastes AWFUL and burns the back of my throat and often makes me cough. A necessary but unfortunate side effect that I must just learn to deal with!

I have had multiple doctor appointments, lab tests, my first Bronchoscopy. There are constant changes to my medications which means updating my 6 page list so I get it right; making sure my pill box gets updated with every medication change. Just filling my pill box takes 2 people over an hour to fill! 

I have the best team helping me and I am so thankful. My medical team, my family whose help is SO invaluable. This is a lot of stuff to remember and it really takes a team to help me get it all done and done right.

The Transplant Team told us it would be like this; they didn't lie! It is a never ending process on which I must focus and it's key to keeping my new lung healthy and working for me as it should. 

It's been a bumpy month since I was discharged after getting my new lung, I'm not going to lie. But it is definitely worth the effort. I see that I am making progress and the doctors are extremely happy with how I am doing. I like hearing that! Now if we could just get this wound to heal and the pain to subside, I'd really be happy. 

But this Christmas is a far cry from last Christmas when we didn't even know what was wrong with me. Here we are a year later and I got my Christmas present early and I have my new lung and I'm breathing on my own with no oxygen. It's all I ever asked for. I couldn't be happier about that!

Yes, I got my Christmas present early! I have lots to celebrate this year!

My Medication Table!

My Pill Box!

My Spirometry Device!

Doing my Spirometry!