Sunday, February 7, 2016

SUNDAY'S INSPIRATIONAL QUOTE & SONG FOR THE DAY!



I haven't posted one of my weekly Inspirational Quotes in a long time. I've been struggling myself with anti-rejection medication side effects, lots of testing and medication changes. My meds also effect my emotional state in a big way. The Transplant Team is trying to help me with that, but they warned us that this could happen and they were right. I don't like it one bit. Everything - good, bad or even happy - causes a response that is WAY over what is called for. I don't like living like this. These drugs are saving my life, but they're making me a crazy person. 

So I am in need of a little inspiration myself.



"Somewhere Over the Rainbow" - Israel Kamakawiwo'ole



Tuesday, January 26, 2016

WORKING HARD AT TRANSPLANT RECOVERY!

Being an IC patient was challenging enough and made exercising very difficult. But now also being a Lung Transplant Patient, exercising has become so difficult, it would be so easy to just quit and give up.

My IC definitely does not enjoy my workouts, but I must just deal with the bladder pain if I am to recover from being sick for so long and becoming as deconditioned as a person can be. I want my strength back. I want to be able to regain my independence and do things on my own. I want to be healthy and not a lump in a chair. I did that when I was sick. But now I am so determined to workout and do the very best I can to regain as much strength as possible.

My Transplant Coordinator told me it's possible I have reached a plateau and this is as strong as I will get. But she also said it's very possible if I keep doing what I'm doing, which they strongly encourage, I can regain more of my strength. Maybe I won't be like I was before I got so sick, but any improvement will be positive.

I have joined a Health Club affiliated with the hospital where I did my Rehab and they have a special program for patients who have had serious surgeries, strokes and the like. I decided to join. I got to meet with a trainer, who evaluated me and put together a strength training program customized for my needs post transplant.

I am working diligently at this program and on the days I don't do that workout, I go and do cardio, either on the Treadmill, the Recumbent Bike or various other machines. I am trying to go 4-5 days a week. 

It has been SO hard that there were days I felt like crying and just giving up. But I am trying to focus on the positive. Before my transplant, none of this would have been possible at all. So, while it's hard and there are days I feel I'm not making any progress, I try to remind myself of where I was before and I am grateful I can do this at all.

Today, at the Club, there was a gentleman in need of a wheelchair, on oxygen and using one of the machines I used when I had to go to Pre-Transplant Rehab and I nearly broke out in tears. That was me a little over a year ago. So I can whine about how hard this is, but I look at someone like that and it reminds me of how far I have come. And how grateful I am. 

I am committed to keeping up with this training program and seeing how much progress I can achieve. And no matter how much progress I make, or don't, I must keep working out in order to prevent me from going backwards to where I was Pre-Transplant. So this is a new way of life for me. 

I had a good Cardio workout today doing 30 minutes on on the Nu-Step machine and 30 minutes on the Recumbent Bike. Tomorrow I will do my strength circuit. I have 2 off days scheduled this week which means my goal is to workout 5 days this week. 

Like I mentioned, my IC bladder doesn't like this one little bit. It's a struggle, but my post transplant rehab must take priority. So I push on through. I listen to my body and if I need an "easy" day, that's what I do. If I feel I can push it one day, then I do that. I mix things up so I'm not doing the same thing every day and that keeps it interesting.

Music helps me and after all I've been through, I don't care if people stare at me in my face mask, fist pumping to one of my motivational songs while working out. I've busted my butt to get where I am. So whatever I need to do for inspiration and to keep me fighting, I'll do!  Like they say, dance like no one is watching. That's me at the Club!


Check out my Workout Video:


Today's Nu-Step Workout:

Today's Recumbent Bike Workout:

BE AN ORGAN DONOR!




Friday, January 1, 2016

A NEW YEAR BEGINS & IT'S A BLESSING!

Happy New Year one and all! I wish everyone a happy, healthy New Year! As we rang in the New Year last night and I woke up to the year 2016 this morning, I just find it difficult to express my gratitude that I am here and able to celebrate with my family & friends.

I have had the most challenging 2+ years of my life. Finding out I needed a life saving Lung Transplant is not something anyone ever expects to hear. I will never forget being told that news up at the Mayo Clinic. I have never been so shocked in my entire life.

I've written before about what the process is like so I won't go through it all again. But I have been through more than I ever believed I could get through. But I got my lung, got through the surgery doing better than any of the doctors thought I would.

It takes a LONG, LONG time to recover from a transplant and I have been diligently working on my rehab and getting my strength back. It's hard work, but it's important to me and I am dedicated to sticking with my rehab program. 


Part of My Rehab Routine!

My Amazing Family Walking the Hike for Lung Health
for the Respiratory Health Association in a Show of Support for me!


It is a long and never ending journey being a transplant patient. Struggling with medication side effects (which I am) is bigger than I can explain. The Transplant Team warned us that having a transplant can be a life saving procedure, but they also told us we would be trading one disease state for another with all the medications we must take. The were right.

Thank heaven for patient family and friends because some of that medication can turn you into a raging crazy person one minute, a crying baby another and a manic happy freak the next! 

As 2016 starts I have SO many people to thank for all their support and encouragement. I thank my medical team at Loyola who literally saved my life and continue to care for me post transplant; my family without whom I literally could not have done this; so many friends who have stood by me and just called to chat and cheer me up as I waited for "The Call". Without all of you I would not be here.

My wish for 2016 is that we can get some sort of control over all these side effects. I want to make more progress on my rehab program. On Monday I go for my 3 month Transplant Clinic visit and I'll get checked out thoroughly. I must go for these check ups every 3 months for the rest of my life. But it's how we keep track of how I'm doing and making sure there are no signs of rejection.

I am so grateful and blessed for being able to celebrate another year. I am hopeful 2016 will be a year of doing well and continuing to improve.  

HAPPY NEW YEAR to everyone!



Auld Lang Syne - Mairi Campbell
There is just something about this version that I love!





Friday, December 25, 2015

WHAT CHRISTMAS MEANS TO ME!

Merry Christmas! We say it so offhandedly during the holiday season, often almost without thinking. And I say it sincerely to all who are reading this Blog. We mean it and we mean well. For many it is a religious celebration, for others not. But when we tell someone Merry Christmas it is usually meant as a happy greeting and I believe it is.

Since I got sick with that mysterious lung disease two years ago, got listed and waited for my lung transplant and then was blessed to receive the Gift of Life 13 months ago I find myself feeling much gratitude all the time. But most especially at Christmastime, I really feel the gratitude and very blessed to be able to spend time with my family and friends.

This is the first year I have been well enough to enjoy Christmas with my family. It has been and continues to be a very special day for me and my family. I have an appreciation for the gift I received and while I think of my donor often, today I have given a special moment quietly to myself to think of my donor with much gratitude. This is likely not as special a Christmas for his family as it is for mine and so I honor my donor and his family on this special day.  If I could see them in person, I would want to give them a hug and thank them for supporting their son's desire to be an organ donor. It has been and will forever be, the greatest gift I have ever received.

This is a special time of year already, as we all gather (when possible) with family and share gifts and be together. It's a time when we all actually stop and take the time to be with those we love and celebrate our traditions and families. 

For me, this is just magnified this year. 2015 has been so very special. I have continued to recover and work on regaining my strength and celebrate the One Year Anniversary of my transplant. And to be able to celebrate Christmas this year is so very special. 

At breakfast this morning we raised our juice glasses in a toast of Merry Christmas and I thanked my family for all they have done for me for the past several years. Now, as we enjoy some pre-dinner celebration, those who can have raised a glass of champagne, while I raised a glass of sparkling cider in a toast of the day. Merry Christmas! We are all sitting together on the couch, all squeezed in tight watching my niece's favorite movie (she is a movie major). It is a small thing, but two years ago it was something I was unable to do. Just to be able to sit with my family and enjoy what we like to enjoy is so very meaningful to me and I don't take it for granted.

It's Christmas Day! A day to celebrate the meaning of Christmas (whatever that means to you). But it's a special day to take the time to be thankful for those we love, thankful for all our blessings and even have some fun and exchange gifts and celebrate our family traditions.

I have a new tradition every day, but at Christmas it takes on special meaning. We exchange gifts at Christmas, but I already have the Greatest Gift of all. I got my Lung Transplant and I am alive to celebrate Christmas with my family. It is a great day and I am so happy to be able to sit with my family, reminisce about Christmases past, laugh and relax and enjoy the day.

Christmas has always been a special time for me and my family. It has become even more special since I received my lung. 

So on this Christmas Day, I give thanks most of all to my donor and his family. I give thanks to the medical team that has taken care of me and literally saved my life. I give thanks for a wonderful family that has gone above and beyond and supported me through the worst time of my life. I am blessed and grateful on this Christmas Day. 

I will work hard to keep this spirit in me every day throughout the rest of the year. We talk about that, many of us; keeping the spirit of Christmas throughout the year. I will do my very best to honor and remember the great gift that I have received. 

To all who have supported me and my family, I thank you. This is such a special day and I am lucky to enjoy it. 

Merry Christmas to all. May you all feel the true spirit of the season and enjoy your day however you celebrate Christmas!


Standing by our Tree!

"White Christmas" - Bing Crosby


Sunday, December 20, 2015

SUNDAY'S INSPIRATIONAL QUOTE FOR THE DAY!

THE UPSIDE OF DOWN

I'm bound for a place called The Upside of Down
It isn't a city nor is it a town.
It's a chink in the darkness where the light filters in
Or the hint of a smile turning into a grin
I'm searching and seeking Oh! Where can it be?
An astonishing find - it is hidden in me.
The Upside of Down is the yes side of no.
It's just round the corner I'm ready to go.
I'll get there much sooner if I don't hesitate.
Now is the time - before it's too late!
For the Upside of Down will not come into view
If I don't lift my head and decide what to do.










Tuesday, December 15, 2015

THE GOOD, THE BAD AND THE UGLY!

It's that time of year when we reflect on that for which we are grateful. We spend time with those we love and share time and gifts, give to those less fortunate, put up decorations and enjoy the season. I am doing all those things. I am so grateful to be able to say that I have passed the one year anniversary of my Lung Transplant. This Christmas season is so very special for me this year. It's the first time in 3 years that I have been well enough to enjoy it. We decorated the house a few weeks ago and it made me so very happy and joyous that I was here and well enough to participate. Some nights I just sit in the living room, lit only by the lights on the Christmas tree and mantle with a smile on my face enjoying the decorations and feeling of the season. For the first time in 3 years, I have also been able to return to one of my loves of the season: baking. While it's still hard to stand for long periods of time, I have been able to bake up some cookies and make some candy and will gift them to friends and share with family. The sense of accomplishment of being able to bake this year is big. It made me very sore, but very happy!

That's the good!

Unfortunately, even after 13 months of recovery and working hard at rehab, I am not fully recovered from the transplant. I keep getting told not to forget what kind of surgery I endured and how long I was unable to move around and needed a wheelchair, which de-conditioned me so much that I could not stand unassisted. So rehabbing from that level of de-conditioning isn't going to come easy or quick. It's frustrating but I am determined to keep at it and keep trying. I am working with a trainer who put together a training plan for me that I hope will help me regain my strength and help with my breathing. I still can't climb the stairs to my bedroom without falling to my knees at the top and huffing and puffing to catch my breath. I want better. I'm impatient I know. The same was true of my baking for Christmas. On just one of the days I baked, I was on my feet for 5 1/2 hours straight plus bending over to decorate the cookies. My back was killing me when I was done and I needed a two hour nap afterwards. Even when I come home from working out with the trainer, I am exhausted and need a nap. Yet I still have no trouble sleeping at night even after a 2 hour nap. I am determined to work to get stronger and healthier. But in the meantime, it's HARD work to do so many things still.

That's the "bad".

Then there are all the side effects from the medications I have to take to prevent rejection along with other things. We were warned before transplant, but all these meds wreak havoc with our emotional stability so it's like being on an emotional rollercoaster. Well, I'm on it and I can't get off and it doesn't take much for the ugly cry to show up. I've also been very frustrated with communication issues with the transplant team regarding various issues. I am working this out, but it's been challenging enough to deal with everything being a transplant patient means, adding other outside frustrations doesn't help.

That's the "ugly"

But ultimately, I am doing well. Better than I think anyone thought I would be doing and for that I am blessed and grateful. Often people think we get our transplant and if you're lucky enough to do well and get discharged and you look so much better, people think that's it. I'm fine. Unfortunately that's not the case. While I am doing well, there is always something to deal with. Side effects of medication is a constant. Dealing with kidney function problems that require IV Saline Infusions for 3 hours 3 days in a row; having a white blood count so low I needed medication injections in my stomach three days in a row. Being so immunosuppressed that I have had to deal with multiple infections and viruses, fevers and the like. It's not easy. But it beats the alternative.

So I am so grateful this Christmas season and am savoring every moment. None of this would be possible without the support of my family and friends who have stood by me and supported me through the worst time of my life. You are all my rocks and I am so grateful you are all in my life and that I am here to enjoy time with you all. I'm having lunch with friends to celebrate over the next few weeks. Family time together for Christmas. 

I will probably write again on Christmas Eve/Day. But as the season is well underway, I wanted to write about what I am feeling during this special time of  year.  The good, the bad and the ugly. It doesn't matter. It's all good really, because I'm here.


Our Christmas Tree 2015!

Our Fireplace Mantle


"Mary Did You Know" - Pentatonix



Wednesday, November 25, 2015

HAPPY THANKSGIVING!

As we all go through the preparations for celebrating Thanksgiving, I get teary eyed thinking about Thanksgiving this year. This is the first Thanksgiving in 3 years that I am well enough to enjoy the holiday and BE with my family.  That's all I ever thought about when I was sick and waiting for my life saving lung transplant - more time with my family.

To have that time now, just brings tears to my eyes when I think about where I was the past two years and where I am now. Last year I had gotten my transplant but had only been home from the hospital for about 10 days and stairs were still off limits so, while the family was in the house and they all brought my tray up to me, I had to eat alone and spend a lot of the day alone as they all worked to prepare our dinner.

This year I get to be with everyone and spend precious time with my family. I treasure that time more than I can say.

I have so very much for which to be Thankful that I will be thinking about tomorrow. I am thankful for a family that stood by me, supported me, encouraged me (still does) and STEPPED UP to help out while I was sick and recovering after I finally got my transplant. Without my family, it simply would not have been possible. I am blessed to have such a loving and supportive family and I am so grateful for each and every single one of them.

I am so grateful for my organ donor and donor family. There really are no words that properly express how grateful I am that they believed in organ donation and gave me the ultimate Gift of Life. I would not be here without such generosity. I hope to meet my donor's family one day so I can thank them in person. But tomorrow, on Thanksgiving, I will have a quiet and special moment of thanks for my organ donor. 

I am thankful for how well I am doing one year post transplant. It's really hard to believe it has been one year since my transplant and to be doing as well as I am is a blessing. So many transplant patients struggle with so many complications. I have had some bumps in the road, but my lung is doing well and any of the issues I've had to deal with are medication side effects which my amazing transplant team always manages to get straightened out.

I am thankful for the many doctors, nurses, and medical staff that took care of me pre-transplant, during my transplant and stay in the hospital and the post transplant team as well! Each and every single one of them has been wonderful, caring and literally life saving. Without them, I would not be here.

I am thankful for all my wonderful friends who stood by me when I was sick and waiting for my lung. Many driving long distances to spend time visiting with me, keeping me company and doing their best to cheer me up and distract me for a period of time. It's a short list of people, but it's a high quality list. My friends called, visited, emailed and stayed in touch and supported me through the most challenging time of my life.

Thanksgiving is a special holiday where we are supposed to take the time to acknowledge the things in our lives for which we are grateful. Being a Lung Transplant recipient really puts an added dimension to the holiday for me. I am thankful for the Gift of Life every single day, and I think of my donor every day, but I will really take time tomorrow to think about all the things I wrote about above and acknowledge what they all have done to help me get where I am!

So tomorrow, when I am with my family just hanging out, having dinner, there will so very much for which I will be grateful. I likely won't be able to get words of thanks to my family out without crying (I cry at the drop of a hat!), but they will be tears of joy!

Thank you to everyone mentioned in this Blog; thank you to everyone who reads my Blog, follows me on Twitter and social media. I am SO grateful for this wonderful and special day. 

May you all have time with loved ones and take a moment to let those people in your lives know how important they are to you.

HAPPY THANKSGIVING one and all!

Me and my Amazing Family!





"The Thanksgiving Song" - Mary Chapin Carpenter