Sunday, August 30, 2015

SUNDAY'S INSPIRATIONAL QUOTE & SONG FOR THE DAY!


I read this and just related to it on several levels I had to
post it as my Sunday Inspirational Quote. I hope you all
relate to it as well.


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




Monday, August 24, 2015

UPS AND DOWNS, BUT IT'S ALL GOOD!

I am now 9 1/2 Months Post Lung Transplant. I truly can't believe that much time has gone by since I received the Gift of Life. Since then it has been a journey of Ups and Downs, which we were warned would be the case. They did not lie!

I am doing very well, really. They keep telling me how great I am doing and I believe that I am. However, there have been Ups and Downs along this journey called transplant and I expect that is the way it will go as long as my lung keeps me going.

The kidney issues I have written about seem to have stabilized. I am so thrilled to get those good lab reports! It does wonders for my attitude and of course we always want things to go well. Today's labs were all good news and the numbers went down and that's what we wanted. YES!!! Major Up!

Unfortunately, my weekend was not so good. I have suffered from Vertigo most of my life, since I was young. I finally was diagnosed about 5+ years ago with Epilepsy and my Neurologist told me it is not uncommon for Epilepsy patients to suffer from episodes of vertigo. However, since I was diagnosed and put on the right medication I have not had an episode in all this time. 5+ years and no vertigo. So I have been so happy about that. Well, this weekend I was struck hard by a nasty episode of vertigo that kept me in bed and still the room was spinning. Luckily, my doctor has prescribed an anti-vertigo medication to have on hand in case I need it, so I caved and took one yesterday. They put me to sleep which is why I don't really like taking them. But they do the trick so it was worth it.  I woke up today feeling much better, but I always have this sort of "hangover" feeling. It wears off as the day goes on which is good. So that was my Down for the weekend.

I am glad I feel better today. I am working, as many of you know to participate in the Hike for Lung Health sponsored by the Respiratory Health Association in a few weeks.  I need to keep walking if I am to complete the event. This is big challenge for me (I know it's only 3 Miles, but 9 months post transplant makes it a big deal for me), but I am determined to do it! If I do, that will be one of my biggest Ups since I got my new lung.

I can't believe I am rapidly approaching my One Year Anniversary of my Transplant! Here's to hoping all keeps going well (for the most part) because I want to have a big celebration when I hit one year! Talk about a big Up!

Being a Transplant patient isn't easy. No one said it would be. In fact they said it would be the hardest thing I would ever have to do. Again, they did not lie. It is hard and I am, even 9 months later, still going through the recovery process in many ways. But I am recovering. I still have post surgical issues and I'm told the pain from my incision can take as long as a year to a year and a half to go away; or it might never go away. I may have to live with that pain for the rest of my life. We just don't know. 

So it's been a journey of Ups & Downs for sure. But when I look at everything in retrospect, I have to conclude that it's really all good! I was told I would not be here without a Lung Transplant, yet here I am! And the recent birthday celebrations (mine and then my Mom's) where family came together to celebrate our special days was all I ever dreamed about when I was so sick. I wanted time with my family and friends. I just want as much time with them as I can get! Transplant patients never know how much time they have. I guess none of us really do but being a Transplant patient is an added layer of mystery and I am grateful for every day I wake up and can enjoy my family and friends. Just being able to walk, talk, take a shower are things that I love and don't take for granted.

So if I have to deal with a few "Downs", then as far as I'm concerned it's a small price to pay for being alive thanks to the precious Gift of Life that I received. Yeah, it's all good. I remind myself of that whenever I might be struggling. IT'S ALL GOOD!


"Way Over Yonder" - Carole King




Friday, August 14, 2015

BRONCHOSCOPY: WHEN'S THE NEXT ONE?!

It's hard for me to believe that it's been 9 months since I received the Gift of Life and got my Lung Transplant! While you are going through it - the surgery, the pain, the rehab, the medication and recovery, one spends a lot of time in the doctor's office, especially early on following surgery. As time passes, you move away from seeing the doctor at your visits, which are now every 3 months, to seeing the Transplant Nurse Practitioner.

One of the many tests a Transplant patient must undergo every 3 months (more if there are signs of rejection) is a Bronchoscopy. You are sedated so it's not an unpleasant procedure.  The scope is gently passed through your mouth, and into your lungs. The doctor takes about 10 tissue samples from the transplanted lung which are sent to the lab to look for infection or rejection. They also do a bronchoalveolar lavage where fluid is squirted into a small part of the lung and then collected for examination. This is all done to check for infections (viral, bacterial or fungal) as well as rejection.

I have gotten so that I look forward to this procedure every 3 months. I find them reassuring, as my results have all been good, but if there is something we need to know about, then it's important this procedure be done so we can discover whatever it might be and treat it. So I have always been more than happy to have to go through this procedure. I made my Nurse Coordinator laugh when I told her this, but she understood what I was saying.

Well, as the time has rapidly (in many respects) flown by, I could not believe this past Monday was to be my 9 Month Bronchoscopy! Already! It takes a few days to get all the lab results back from this test, but I have heard from my Coordinator and it's all good:  NO INFECTION & NO REJECTION!

That's what we want to hear! Making it to 9 months with such good test results in Lung Transplant is a big deal, as Lungs don't statistically do as well as other organs. So I am thrilled! They also drew blood to check on my kidney function, which I've previously written has been elevated, requiring me to go for two IV infusions. We are checking it every 2 weeks. Well, I got basically good news. It's unchanged since the last check. It's still a bit high (certainly for a healthy person), but for me, since it did not go up but stayed the same, that's good news! I'm drinking my water religiously, and hopefully that will keep things holding steady.

I can't believe it, but the next Bronchoscopy will be done around my one year transplant anniversary! I can't believe that is only 3 months away. A year ago I didn't know if I'd even get my lung and here we are doing well 9 months post transplant, with my one year anniversary rapidly approaching! 

Making it to one year in Lung Transplant is a Super Big Deal! I hope to get the same results in November that I've gotten all along and have even more reason to celebrate making the one year mark! So, I actually look forward to my next Bronchoscopy. Call me crazy, but I like knowing what's going on and this is how we know! Here's to the next Bronchoscopy in November and continued good results!

Bronchoscopy Procedure!



"Fight Song" - Rachel Platten







Monday, August 3, 2015

ANOTHER MILESTONE!

So today I hit another Milestone in my post Transplant life. Today is my 9 month Transplant Anniversary when I was blessed and given the Gift of Life!

I find it so hard to believe that 9 months have gone by already. I am making good progress in my recovery and, while there are issues here and there, things seem to be going well overall. There will always be bumps in the road being a Transplant Patient and I know I ask my Coordinator SO many questions, I'm sure there are days she'd like to trade me in for someone who wants less information.

But I find my Coordinator to be such a fantastic resource, with never ending patience and so helpful with all my questions and anxieties when they pop up. The entire Transplant Team is simply the best and I would not be celebrating this milestone without each and every one of them!

Next week I have my 9 Month Bronchoscopy and hopefully that will show all is well with my lung. The next one will be on my 1 year anniversary! That's rapidly approaching - November 3rd. I plan on having a big celebration to mark that date, which I am calling my "Re-Birthday"!

Before then, I plan on hitting another milestone as I will be doing the Hike for Lung Health sponsored by the Respiratory Health Association on September 20th with my brother. I am raising funds for them and so far I am the #1 Individual Fundraiser for the Hike! I am so close to reaching my fundraising goal, I hope I get there.

I have hit so many milestones along this Transplant Journey and that makes me so happy. I wrote my Donor family back in April which has very strict guidelines and you never know if you'll ever hear back. Over this past weekend I was so surprised and pleased to received a letter back from the Donor family in which they express their desire to meet. I have contacted the Transplant Team and they are starting the process of putting us in touch. I consider it a very special second gift that to have received a letter from them telling me about my donor. I am so blessed and grateful and hope to meet them someday soon.

I continue to fight whatever comes my way. Right now I am fighting a virus that is making it hard to work out, but today I pushed myself and went for a walk anyway. I did not go far, only 1 mile, but it's better than nothing and I could not have done as much one year ago. So it's another celebration of my 9 month Anniversary!

I have so much to be grateful for. When I was waiting for my lung, it was hard to imagine ever getting it, the wait seemed so long and yet it finally came and I got my beautiful new lung. As I woke up in recovery still intubated, with 2 chest tubes and line in my neck and IVs it was hard to imagine moving past that to even get home. But I recovered quickly, getting extubated after I finally was awake and they determined my vital signs were good enough to remove it. The chest tubes came out soon after along with the line in my neck. I never would have guessed I would go for my first walk 4 days post transplant. Everything seems so far away but each item gets checked off and I was discharged from the hospital only 7 days post transplant! I never would have imagined that was possible. At that time, rehab was SO challenging but I did it. I could never imagine that 9 months later I would be planning to walk 3 Miles to raise awareness for lung health!

But here we are; 9 Months Post Transplant! It's another Milestone for me that is worth taking time to celebrate and acknowledge! 


First Walk - 4 Days Post Transplant

First 3 Mile Walk - 8 Months Post Transplant







Sunday, August 2, 2015

SUNDAY'S INSPIRATIONAL QUOTE & SONG FOR THE DAY!

As I have gone through the most challenging time in my life over the past nearly 2 years, discovering I needed a Lung Transplant, I also discovered that I had to dig deep and face my fears and do something I never thought I would have to, let alone COULD do.

But with the support of my family, friends, fantastic Loyola Medical Team, and so many others who provided all kinds of support, I found the strength to go through my Lung Transplant, Rehab and Recovery. I am still working on Rehab & Recovery; it's a long, slow process especially being as de-conditioned as I was. But this Inspirational Quote speaks to me and the ability to do what we think we can't. One step, one day at a time and you will get to where you need to be!



"It's A Beautiful Day" - Michael Buble
While this song seemingly is just about a breakup, I believe it
also sends a message that no matter what's going on in your life,
there is so much to be thankful for.



Sunday, July 26, 2015

RECOVERY, INSPIRATION AND THE HIKE FOR LUNG HEALTH!

One year ago, I was suffering from an incurable, terminal lung disease, on the UNOS Waiting List for a Lung Transplant. I was in a wheel chair and on oxygen 24/7, needing a Bipap to sleep at night. I had been admitted to the hospital too many times to count in respiratory distress. Flew to the Mayo Clinic to get a diagnosis. It was July and my 59th birthday was nothing to celebrate. I didn't know if I would even be here to see my 60th Birthday.

But while it took 4 more months, I got THE CALL and received the Gift of Life and my Lung Transplant.

It has been a long journey to where I am today. Recovering well, getting back in shape and working on my physical therapy. As I have progressed, I decided I wanted to do something I thought I might never do again - a 5K Walk. But not just any Walk; one for Lung Health.

So I have committed to participating in the Respiratory Health Association's Hike for Lung Health on September 20th in Lincoln Park (Chicago).

I'd like to ask all my readers to please consider supporting me in this important event. This is so important to me. The fact that I got my Lung Transplant that saved my life and that I can even consider doing a walk like this is a miracle!

The past year has been the most challenging time of my life. I have worked so hard to get through my Lung Transplant, work on my recovery and rehabilitation. To get to the point where walking 3 miles is even a possibility seemed so far away. But here I am working on my rehab and signing up to walk 3 miles to raise awareness and fundraise for research for lung disease.

I hope you will consider supporting me (no matter how small) and this worthy cause by making a donation to my fundraising page! If you are unable, no explanation is necessary, but if you can help in any small way, it will mean the world to me and you will be helping others suffering from lung disease.









"Don't Give Up" - Josh Groban