SUNDAY'S INSPIRATIONAL QUOTE & SONG FOR THE DAY!

Look to this day,

For yesterday is but a dream,

And tomorrow is only a vision,

But today, well lived,

Makes every yesterday a dream of happiness,

And every tomorrow a vision of hope.

Look well, therefore, to this day.

Sanskrit Proverb

"Reach" - Gloria Estefan

REFLECTIONS ON MY LIFE!

I am turning 60 in a month. That's an age where people have a tendency to reflect on their lives; often people begin to retire around then; try to slow things down and take it easier - enjoy life more. As we get older we often realize what is really important in life - family, friends, our health.

As a lung transplant patient, I have found myself drawn even more to reflecting on my life and how I ended up where I am. There are no answers.

Especially as I post Throwback Thursday photos of me from a young child throughout my life but all before I got sick. I realize it was a different life; that was then, this is now. There's before I got sick and after I got sick.

Life IS short; often we don't realize it as we go through our lives, work to build a career we like, love if we're lucky. But one day I post a Throwback Thursday photo of me at 28, healthy and enjoying life, when it really hits me I'm turning 60 in a month and I've been sick with one disease or another for 13 years! How on earth did I end up here, like this? Suffering from multiple diseases (Interstitial Cystitis and associated co-morbid conditions; cardiac issues and Epilepsy) has been challenging enough. And then, just to make my life even more challenging, in November 2013 I wake up one day with a bad cough and think I have a cold. Three months, multiple hospitalizations and a trip to the Mayo Clinic later, I am told I have an incurable, rare lung disease called Idiopathic Bronchiolitis Obliterans. WHAT? Now I really want to know how I got here, but the doctors can't tell me. It seems to have happened literally overnight; one day I am fine, then slowly I develop multiple medical conditions requiring I stop working and go on permanent Disability. And as if that wasn't enough, then I get this mysterious lung disease and within 3 months I am told I need a Lung Transplant or I will be out of options.

Luckily for me, I was accepted into Loyola's Transplant Program and finally got my transplant on November 3, 2014. It's now 7+ months post transplant. I am doing well, although there are issues that I must deal with, as do most transplant patients. My anti-rejections meds are causing kidney function problems requiring medication adjustments and weekly blood tests. Also, my body is building antibodies that want to attack my transplanted lung and cause rejection, so that has to be monitored with monthly blood tests. It's a juggling act. They must get the medication levels right so that they prevent rejection but don't damage my kidneys to the point I end up in kidney failure, on dialysis and waiting for a kidney transplant. 

I look at the pictures of myself as a young woman and I just stare at them and can't believe that girl has ended up with all these major health problems. It seems like we are two different people. 

I've said it before; Transplant isn't for sissies. Seven months post transplant and I still suffer from post surgical pain, need wound care and I will be working on my physical rehabilitation for a very long time. Being in a wheelchair on oxygen for a year caused such extreme de-conditioning, it takes a lot of hard work to get back in shape. I am making progress, but it seems so slow. Once, I was the girl who ran so many 10k's I can't count them, 5 Half Marathons and the 1989 Chicago Marathon. I was an avid skier. Loved anything involving the outdoors. Now, climbing a flight of stairs feels as hard as the Marathon did. 

Who is this woman I have become? I don't recognize her. But here I am. I've gotten through things I never thought I could handle and I'm proud of that. I never thought I could handle a surgery like a Lung Transplant, but I did. 

I think all that training I did, helped develop my determination; if I want something bad enough I'll work hard to get it. I have had to work harder than I've ever had to in my entire life over the past two years. 

I am stronger than I ever believed I could be when I was that 28 year old. I think about that too these days. While I never expected to end up being on Disability and a Lung Transplant patient, I have discovered that I am strong enough to handle all those things. When things get tough and I have a moment, I am able to pull it together by reminding myself how hard I have fought to get to where I am today and with the love and support of my family and friends.

As I find myself reflecting on my life, I acknowledge it's been a long and very winding and strange road that has brought me to where I am today. 

Getting so many diseases and needing a Lung Transplant were not on the list of things I wanted to do in my life. But as I reflect on where I am, it's better than the alternative. So, while I've had my share of challenges, I am glad I am here and will keep fighting and doing whatever my doctors tell me to do.

Here's to life and the long and winding road that has brought me here. I am looking forward to celebrating my 60th birthday, the one year anniversary of my transplant in November and lots more family birthdays, anniversaries and special events!  Sometimes reflecting on your life is a good thing. While my life hasn't turned out as I would have expected or even wanted, I am here and for that I am blessed and grateful! 

"Way Over Yonder" - Carole King

SUNDAY'S INSPIRATIONAL QUOTE & SONG FOR THE DAY!

"I Won't Back Down" - Tom Petty & the Heartbreakers

LEARNING ABOUT LUNG TRANSPLANTATION!

I have written a lot over the past year and a half about my experience with lung transplantation. I thought it would be informative (my goal is to educate as often as possible) to share some videos from Loyola where I was lucky enough to be accepted and had my lung transplant. None of the videos are long but they give you excellent insight into what the process is like for those of us that go through it.

I hope you'll take a few minutes to watch and learn. This is my Team that I trust with my life; they are simply the best. 

http://www.loyolamedicine.org/transplant/newswire/news/loyola-sets-state-record-lung-transplants-2014

"While You Wait for a Lung Transplant"

http://loyolamedicine.org/newswire/features/while-you-wait-lung-transplant

"Evaluation for a Lung Transplant"

http://loyolamedicine.org/newswire/features/evaluation-lung-transplant

"Time for Lung Transplant Surgery"

http://loyolamedicine.org/newswire/features/time-lung-transplant-surgery

"Recovery from Lung Transplant Surgery"

http://loyolamedicine.org/newswire/features/recovery-lung-transplant-surgery

Sitting Up for the First Time with my Brother!

Home Post Transplant!

The Never Ending Blood Tests!

AN IMPORTANT ANNIVERSARY!

Today is a very important anniversary to me and as I look at the calendar I cannot believe it's been a year. I take a moment to stop and be grateful for today is the day, one year ago exactly, that I got the call from Loyola that I had been put on the UNOS Waiting List for a Lung Transplant!

June 10, 2014. It had taken multiple stays in my local hospital, a trip to the Mayo Clinic, being denied as a candidate by the University of Chicago, finally being given an appointment at Loyola Medical Center to talk to the Transplant Doctor about being accepted into their program. Followed by a week long stay in Loyola undergoing more testing than I thought was even possible, more blood taken I surely thought I'd run out. Then the Transplant Team had to meet to review the results of all those tests and decide if they would accept me as a Transplant Candidate in their program. 

It had been since November, 2013 since I had gotten sick. And all this time I kept getting worse and no one could tell me what was wrong. When I was finally diagnosed at Mayo and told I would need a Lung Transplant, I naively believed I would return to Chicago and just get accepted by one of the Transplant Hospitals. But no, it was not that easy. Sometimes it felt like I could get an appointment with the President easier than I could get accepted for a Lung Transplant!

Finally, one of the Transplant Nurse Coordinators called me with the news. After 7 months of struggling with this mysterious illness that came out of nowhere and was threatening to take my life, I was given the great news that I had been accepted into Loyola's Transplant program and was now officially on the UNOS Waiting list for a new lung!

So today is a special day. Getting on that list is so important. If you don't get on the UNOS list, you won't get a transplant. It's that simple. It was great news and I will never forget the tears streaming down my face at the POSSIBILITY that I could get a new lung and my life would continue.

The waiting for that new lung also began that day. Because while I was just given great news, there's no guarantee that I would ever get my lung. We need more organ donors. It's that simple. We all think we're going to live to be old and gray, but you never know and should the worst happen, do you want your legacy to be one of helping others live? I hope so.

So my request on this anniversary of being listed on the UNOS Waiting list for my lung (and I am now 7 months post transplant and doing well), I'd like to ask everyone to consider being an organ donor. Many who think they can't be a donor, actually can. And even if all your organs can't be used, often many can be; corneas, tissue and more. 

Please consider being an organ donor and letting your family know that this is your wish; put it in writing. Here's a link to the UNOS website where you can read about the urgent need for more organ donors. 

http://www.unos.org

Be An Organ Donor

This Anniversary of being put on the UNOS Waiting list is a date I will never forget. It ended up saving my life thanks to the generosity of an anonymous and selfless person who  gave me the ultimate Gift of Life!

Me After my Transplant Enjoying Life and my Family!

"Thank You" - Keith Urban

SUNDAY'S INSPIRATIONAL QUOTE & SONG FOR THE DAY!

It is now 7 months since my Lung Transplant. While there are and have been bumps along this road, I am alive. A year ago I still had not been put on the UNOS waiting list. That anniversary is in a few days. You've probably noticed that I take note, celebrate in small ways the many milestones that come with being a transplant patient. It seems to be a transplant "thing". But we have so much for which to be thankful, for without our transplant, there would be nothing to celebrate. By the time I got my lung, the doctors were extremely concerned that I would live long enough to get my organ. So these milestones are very important to me. Every single morning that I wake up, I think of the anonymous donor that gave me the ultimate Gift of Life and the lung that saved my life. I will think of the day that I was finally put on the UNOS waiting list. I will celebrate every time I make it one more month; June 3rd was my 7 month anniversary of getting my transplant. As the months tick off, the Transplant team tells me how great that it is. I am working so hard to make it to the one year mark and hope everything continues to go well, or is manageable, so I can celebrate my one year anniversary of what I am calling my "Re-Birthday"!  

So, when looking for an Inspirational Quote for today's post, I came across this and it really seemed appropriate to me. I am grateful every single day to be alive and enjoy spending time with family and friends. That's what is important to me and what makes me smile!

“If you're reading this...

Congratulations, you're alive.

If that's not something to smile about,

then I don't know what is.” 

― Chad Sugg

Me and my Family!

"What A Wonderful World" - Tony Bennet & K. D. Lang

IT'S A ROLLERCOASTER!

Having a Lung Transplant is one of the most complicated and serious surgeries a person can have. They are more complicated and complex than a heart transplant. The outcomes are not as good as other organ transplants. They were the last organ to be taken on for transplant because of the complexity of the surgery. All of this is to explain that along with such a difficult surgery, the recovery is also very challenging, slow and really requires a lot of hard work.  Not that this is a surprise to me; the Transplant Team does a great job of preparing you and telling you what to expect. They did not exaggerate!!

Step on up to the roller coaster. There are so many ups and downs that I'd swear I've boarded the biggest roller coaster out there. The good news is my lung has been doing fantastic so far. Every test and Bronchoscopy and culture we do, to check it, comes out great. I am told my lung function is fantastic and that's hugely important! Wheeee! The roller coaster just went down a steep drop with the good news.

But then there are the side effects from all the medications I must take for the rest of my life. All transplant patients must take immunosuppressants to prevent organ rejection. As the doctors explained, our bodies will NEVER, that's NEVER, accept the transplanted organ. Without the anti-rejection medications, our bodies would attack the organ because it thinks it's an invasive thing there to do us harm not save our lives. So immunosuppressants are going to be part of my life forever. I knew that too; they explained all this. But as that roller coaster heads up the steep climb to the top, problems with side effects from those immunosuppressants start to pop up. For me, it has been liver and kidney issues. We managed to get my liver function stabilized, but my kidneys are not cooperating.

I am told the lab reports show that I am dehydrated. I am shocked because I've been drinking about 64 oz. of water a day! They tell me to drink another bottle! Seriously?! I don't think there are enough hours in the day to drink that much water! Plus with my Interstitial Cystitis disease, my bladder is not enjoying this one little bit.

It's hard not to worry about kidney failure as it's a common problem for transplant patients, many of whom end up on dialysis and then needing a kidney transplant. I'd seriously like to avoid that. I am told by my team that I am nowhere near that yet and they will tell me when I need to worry if it even gets to that. I have blood tests coming up in about a week and we'll see how my kidneys are doing since the last test. I'm hoping they are at least stable and not any worse. They will check them again when I see the Transplant Team in July. So they are monitoring me. But it's hard not to be anxious, but I am working on it. I trust my team and they know what they are doing. So I close my eyes and hold on tight as the roller coaster makes its way up and down and around.

Then there's my physical rehab. I am working so hard on my physical rehabilitation. I was in a wheelchair and on oxygen for over a year, so I was completely deconditioned. By the time I finally got my transplant, I could not stand without assistance or even walk without a walker. Forget about stairs completely. So to get back in shape was going to take a huge commitment on my part and a lot of hard work. It also wasn't going to happen overnight.

I am working so hard at it. It began with in-home physical therapy until I was strong enough to begin going to out patient rehab. Out patient rehab was twice a week for 12 weeks. When you begin rehab you are required to do a 6 Minute Walk Test (I've also done these for the Transplant Team; before my transplant I could barely walk 100 ft.). They test your oxygen saturation during the test and your blood pressure. When I started back to Rehab after my transplant I was able to walk 684 ft. which at the time was a big deal! When I completed my 12 weeks of Rehab, I had to repeat the 6 Minute Walk and on my final 6 minute walk I was able to walk 1,337 ft.!!!! I was so excited by the improvement! So another big downhill on the roller coaster as I can see the progress that I am making. 

Now I am on my own for my rehab and must be dedicated to keeping up with my exercise. If you follow me on Facebook, you will often see posts about my workouts and how I am doing. It is HARD work, let me tell you. There are many days I wish I could skip it and just sit in my chair and be lazy. But I cannot. I promised the Transplant Team that if I got a lung, I would do everything I was supposed to do to take care of this great Gift of Life! So that's what keeps me going. Knowing I must do all I can to take care of this precious gift. 

I am making good progress when I walk or use the treadmill or bike at our Fitness Center. However, the stairs in our house up to my room are still like climbing Mt. Everest to ME. When I reach the top I am totally out of breath and need to sit down. Stairs, really no matter where, still do me in. This is the roller coaster making its way up the steepest climb on the ride. I feel I have made no progress at all when it comes to climbing stairs! It's frustrating. I have an app on my iPhone that tracks things like climbing stairs, how far I walk etc. So I carry it with me all over the house so I know how many times I've climbed the stairs in one day. Often it's as many as 10 times up and down. And yet I still struggle every single time I must climb them. Will it EVER get easier?!?! 

My wound (the part of the incision from my surgery that did not close) is still not completely closed. My Mother still has to scrub it every day and put on a clean bandage. That hurts like the devil. It hurts, really, all the time. The whole incision still hurts, although part of it is just numb. When oh when will this heal and the pain at least begin to dissipate?!?!

These are the ups and downs of the roller coaster ride that is being a Transplant patient. Nothing comes easy and I must remind myself every day that I am here; I am alive thanks to the ultimate Gift of Life given to me by an anonymous stranger. So I keep going, and keep fighting. One must learn to take the not so good with the good. 

So, I got on the roller coaster and I'm hanging on for dear life. I always hated roller coasters; never could ride them as they make me sick. So this feels a lot like that. I don't want to be on it; the ups and downs are not fun. But they ARE part of the deal when you become a Transplant Patient.

Oh, and I can never get off the roller coaster. It's like Groundhog Day; it just keeps repeating itself over and over and I must keep up my efforts to stay on it. This is hard, but it's worth the effort. And that's what I keep reminding myself as I climb those stairs!

MY IC BLADDER VS. MY KIDNEYS!

My Transplant Team keeps telling me how great I am doing. And, most important, my lung function is excellent and I have no rejection issues at this point. All good stuff.

However, the immunosuppressants I must take for the rest of my life are giving my kidney function fits. The most recent kidney function test was the second highest number I have recorded since January. But my Coordinator tells me there is nothing to be done about it and I am nowhere near the stage where we have to worry or send me to see the nephrologist. It's hard not to worry, but they keep reassuring me and so I must trust my team. They saved my life and they know what they are doing. I need to work on trusting them and not worrying when they tell me it's not time to do so yet.

They want me drinking LOTS of water. All the lab results show that I am dehydrated even though I am drinking over 90 oz. of water every day! They said, drink more. Drink more! There aren't enough hours in the day to drink over 100 oz. of water in the day! But I'm pushing fluids as best I can.

And this is where my IC hates my transplant & kidneys. My poor IC bladder does not like me drinking THIS much water. Of course, I always made sure since getting IC to stay well hydrated, but not to flood myself. I feel like this is flooding and my bladder is screaming at me. And with my retention, that means even more catheterizing. The labs showing that I am dehydrated are because my kidneys are not functioning properly so my body is asking for more water. 

This is hard. It's hard to drink as much water as they want me to.  It's hard not to worry about my kidney function, especially since it's one of the most common problems transplant patients must deal with, often needing dialysis and ultimately a kidney transplant. They tell me I'm not there yet. I'm anxious to see the next set of test results. I go in two weeks for another Complete Metabolic Panel which will show what my kidney function is. I am hoping it stays level and doesn't go up. That would be a good thing.

Then my next appointment with my Transplant Team is July 6 and they will check it again then. So they are monitoring me.  My Coordinator keeps telling me, no news is good news. If she has something serious or important that I need to know, she WILL call me. Otherwise, I can assume all is well. This is hard for me; I want info. It helps me and I cope better knowing no matter if it's good or bad. So I must get used to this way that they work. It's hard for me.

But this is a real challenge and they warn you before your transplant that it will be like this. They warn you of potential medical issues from all your medications. So I expected this. But no one wants to hear the words renal failure. So here's to my test results holding steady the next two times we test them.

In the meantime, my IC is making it even more challenging than it would already be. It's interrupting my sleep as I am getting up constantly to pee (even more than before, if that's possible). I was already on Disability for my IC, so it was pretty bad. All this water isn't helping. But I have no choice and I will do my best to follow my instructions and be a compliant patient. I've been given the greatest gift, so I will do what I am told and everything I can to insure a successful outcome.

I already had IC when I came down with this mysterious lung disease. Seriously?! I didn't have enough medical woes (IC, Epilepsy, Cardiac Issues to name a few) that I needed another! And of course it had to be life threatening; if I didn't get a transplant, I would die. Gee, I wasn't having enough fun already, I needed this too!

Well, I never imagined I could get through a major operation as big as a Lung Transplant, the post surgery Rehab and all that goes with being a transplant patient. But I am doing it. So my IC will just have to take a back seat while I try to keep my kidneys functioning. I'll cope; my psychologist is a big help.

Sometimes I feel my body has turned on me and I just want to give up. But once I asked and was granted acceptance to being a transplant recipient, giving up was not an option. So I fight on; every day. I take my meds on schedule, I work on my exercise and my diet. And, yes, I drink all that water! I think I'm going to float away. 

I envision my bladder cursing at my lung and my kidneys. My poor IC bladder is not happy. Well, that's life. I'll have to cope with it.

My Water Bottle!

SIX MONTHS POST TRANSPLANT - THE GOOD, THE NOT SO GOOD AND EVERYTHING IN BETWEEN!

I haven't Blogged in a few weeks for several reasons. We've been moving (not that I'm any help) and Comcast screwed up the change-over to the new house and we didn't have ANY phone, Internet or TV for nearly two weeks! It was such a cluster**** you wouldn't believe it. But leave it to my Mom to never give up and she finally got it straightened out and got us a bunch of free stuff too.

I also had my 6 month Post Transplant Bronchoscopy. It went well and got all good news from all the labs taken from the procedure! So that's the good. However, I had a delayed reaction to the Bronchoscopy, which was on Monday. When I woke up Wednesday morning I had a fever of 101.8! Time to call my Transplant Nurse Coordinator. It's not unusual for this to happen, although the 2 day delay is a bit out of the ordinary. I was given permission to take some Tylenol (I'm not allowed to take ANYTHING without permission) which I did. And while the fever went down over the next 24 hours, it did not break until Friday. I was WIPED OUT for the whole week! It really knocked me on my butt. So I've been slow to recover from that.

I had some blood work taken this past Friday and am anxious to talk to my Coordinator on Monday, as the kidney function numbers are not good. Whenever they've been this high before, I got a phone call about it and what my doctor wanted to do. My potassium level is also extremely high, which is likely the result of the renal function problems.

I have been so excited to have marked the six month anniversary of my Transplant. I've been told by my Transplant Team how great I am doing (although that was before these recent blood tests showing the poor kidney function). I feel pretty good and keep adding things to my daily routine. I'm making all my meals myself; doing laundry all by myself; keeping up with my exercise since graduating from Rehab. 

I feel confident that the Transplant team can take care of my kidney issues; they have before. It's usually a matter of adjusting some medication. It's a challenge for many transplant patients, so I'm not unique in this regard. I just want them to get it controlled as I would like to avoid the total kidney failure many transplant patients go through. I don't think I'm ever scheduling lab tests on a Friday again; waiting to talk to my Coordinator about this the whole weekend is nerve wracking. But I'm keeping up with my routine and trying to stay positive that all will be well.

Six months is a big deal in Lung Transplant vs. other organs. So having made it to this milestone as well as I have, is very positive. 

A year ago, I wasn't even listed on the UNOS Organ Transplant Waiting List yet. Now I am 6 months post transplant! Truly a blessing for which I am ever grateful. I wake up every single day and think of my donor, grateful for their generous gift of life that saved mine. 

I am confident the Transplant Team will get this kidney issue under control and I will continue to do well. I refuse to think otherwise. I am looking forward to marking other milestones and continuing to enjoy this wonderful life.

Celebrating My 6 Month Anniversary

I Walked a Personal Best on this Day of 1.55 Miles!

My "Bravelet" Bracelet for Raising Awareness

for Organ Donation & Transplantation

A Gift from a Dear Friend

"Be Brave"

"Win" - Brian McKnight

HONORING THOSE THAT GAVE THE GIFT OF LIFE!

As a Lung Transplant recipient, I have been truly humbled to have been given the ultimate Gift of Life. I have been grateful to the anonymous individual whose lung I received and think of them often. I have written my letter of thanks following the guidelines provided by my transplant team. It is anonymous and the donor family may or may not reply. I'm OK either way. I felt compelled to write to the family and express my deep gratitude for their supporting organ donation and to let them know that I think of my donor often. I will also never forget that person and will honor their gift every year on the anniversary of my surgery.

April is UNOS National Donate Life Month, so there are many activities going on around the country at transplant centers to honor organ donation and organ donors and their families. The other day, Loyola, where I had my transplant, held their 23rd Annual Candlelighting Ceremony to honor organ donors and their families.

It was a beautiful, moving, humbling and emotional ceremony. There were speakers who had received a heart transplant, lung transplant, liver/kidney transplant, but the most emotional was the mother who spoke about her children. One, a daughter, who needed an ankle transplant, having been born with a club foot. The other, her only son, who upon getting his driver's license signed up to be an organ donor because as his mother told the story, "our family recycles everything". Here was a mother who was waiting for so long for a transplant for her daughter's ankle and then the worst thing that can happen does. Her son is killed in a car accident and, per his wishes, saved the lives of multiple individuals. Her son's ankle was too big for her daughter, so it went to a basketball player who was then able to continue pursuing his basketball career. Her daughter finally got her ankle transplant and this mother spoke of what it's like to lose your only son, but have him save so many others, and then have your daughter be the recipient of a much needed transplant. It was the most emotional and amazing story and she received a standing ovation among many tears being shed in the audience.

Then it was time for organ donor families, organ recipients (like me) to go light a candle in honor of our organ donor and all organ donor families. When I was handed my candle, lit it and placed it among the other lit candles, I thought of my donor and was filled with gratitude and much emotion. Tears ran down my cheeks.

There was a lovely reception afterward and I was able to speak to many on the Transplant Team that saved my life and are still working to help me be a successful transplant recipient. It was truly great to be able to thank them for all they do and for accepting me into the Lung Transplant Program. There were lots of hugs all around. If you just stood and quietly watched, you would notice how every member of the Transplant Team knows every patient by name; the patients all want to hug and take pictures with their medical team. It's a special bond we have with each other as patients and with our medical team that saved our lives.

The event was even covered by our local CBS affiliate, Channel 2 News; here's a link to their story on the event.

http://chicago.cbslocal.com/2015/04/23/tragedy-followed-by-organ-donations-gratitude/

Getting Ready to Head Out for the Candlelighting Ceremony

Wearing my Blue & Green, the colors of Organ Donation & Transplant Awareness 

Please consider being an Organ Donor!

http://www.unos.org

This candle is lit in honor of the individual who gave me the Gift of Life;

I am forever thankful and will honor them and remember them always.

"Tears in Heaven" - Eric Clapton

SUNDAY'S INSPIRATIONAL POEM & SONG FOR THE DAY!

The Victor

by: C. W. Longenecker

If you think you are beaten, you are.

If you think you dare not, you don't. 

If you like to win but think you can't, 

It's almost a cinch you won't. 

If you think you'll lose, you're lost. 

For out in the world we find

Success begins with a fellow's will. 

It's all in the state of mind. 

If you think you are out classed, you are. 

You've got to think high to rise. 

You've got to be sure of your-self before

You can ever win the prize. 

Life's battles don't always go

To the stronger or faster man. 

But sooner or later, the man who wins

Is the man who thinks he can.

"Defying Gravity" - Idina Menzel

THE DAILY RITUAL OF THIS TRANSPLANT PATIENT!

Post transplant is a lot of work. My daily ritual goes something like this:

- Get up at 7:15-7:30AM
- Take Vital Signs and Log for Transplant Coordinator (Weight; Temperature; Blood Pressure)
- 2-3 times a week check Blood Sugar
- Use my Spirometry Device and record outcome; need 3 successful tests (the machine talks to you so if you don't blow hard or long enough, it tells you your tests was unsuccessful and you must do it again) - my torture device!
- Anti-Fungal Nebulizer (takes about 1/2 hour) - Awful tasting and makes me cough!
- Shower and change Wound Bandage; while in the shower, I must sit on the shower chair and my Mom must scrub the wound, and run the hot water over it to get it clean and healthy; put on new wet to dry bandage once out of the shower - yeah, that's fun.
- Take Nasal Spray
- Take Daily Morning Medications (11 different pills just in the morning; 33 pills total for the day)
- Take the one Medication that is a Suspension Liquid - Disgusting doesn't begin to cover it!
- I am required to wait one hour after I have taken my pills before I can eat my breakfast.
- Get Dressed and check the clock; can I eat yet? Usually take pills at 8AM, so breakfast can be at 9AM. Oh look at that; it's taken so long to get all this done, it's actually 9:30AM and yes, I can eat breakfast.

The morning ritual takes about 2 hours. None of it can be skipped and all of it must be recorded for my Transplant Coordinator to review when she sees me. 

On the days I go to Rehab I have to make sure I get it ALL done, including breakfast so I can get out of the house by 10AM to head off to Rehab. By the time Rehab is over and we get home, it's noon and it's time for more medication and lunch.

By now I need a nap. My wound is sore from Rehab and I'm usually worn out from the exercise, so I have my lunch and take a nap.

Before you know it, it's 4PM and time for more medication. I finally have some time for getting on Facebook, maybe working on my Blog, Twitter or trying to talk to friends.

And then the before you know it it's dinner time. 8PM is time for my final round of medications. I try to stay up until 10PM so I don't go to bed too early and then wake up too early. But my sleeping is all over the map. If my cough wakes me up, usually that means getting out of bed and coughing for two hours. 

Sometimes, like the other night, I was in pain and couldn't sleep. I have pain medication, but if I take it I'll be a zombie in the morning and yesterday's morning routine had to start early because I had a doctor appointment and couldn't be running late because I overslept.  So I sat up from about 1:30AM until 3:30AM before trying to go back to bed and fall asleep.

Most nights something wakes me up several times a night. My IC bladder is often one, so if it isn't transplant related, it's my IC. I know many can relate to the sleep problems; it's not fun for sure.

And the whole thing starts over again the next day. Tuesdays and Thursdays are always Rehab. This week I have a doctor appointment on Monday, then Rehab on Tuesday and Thursday and the Wound Care Nurse down at Loyola on Wednesday. So I have an appointment every day but Friday. This is typical. The same thing is on the calendar the next week. 4 out of 5 days I have either Rehab or a doctor appointment.

Then there's the side effects of all that medication that has to be dealt with.  Having a transplant is like having a full time job. They told us it would be like this. They didn't lie or exaggerate that's for sure!

Yes, it's a lot of work. Saturday or Sunday I must fill my pill box for the week and that takes about an hour to fill the 28 slots in the box. But it's worth it. I am here, I am alive and I am blessed and lucky. But getting a transplant isn't easy and takes a lot of dedication from not only the patient, but their support system as well. 

The daily ritual is time consuming and often feels like a job. But it is work well worth doing and I am grateful to be doing it!

"Coming Out of the Dark" - Gloria Estefan

SUNDAY'S INSPIRATIONAL QUOTE & SONG FOR THE DAY!

I just realized that I haven't written a blog since last Sunday's Inspiration Poem. It's been a rough week for me; my wound is not healing and giving me pain, then I bumped it on the staircase railing as I was going upstairs - OUCH!  This cough is driving me nuts and keeping me up at night. I've had seemingly endless appointments and Rehab, so I'm out a lot. Next thing you know the week is gone and I haven't written anything. I'm working hard at Rehab and trying to get stronger, but I am tired and in need of inspiration, so here the usual Sunday Inspirational Poem & Song for the Day. May we each find the inspiration and motivation we need to keep going even when it's hard.

Magic Wand

I wish I had a magic wand

To make it go away;

I'd wave my scepter over you

Until you were okay.

I'd think good thoughts; I'd send you love;

I'd transmit healing vibes;

My wand and I would surely beat

Whatever the doc prescribes.

But there is no magic scepter, so

I cannot cast a spell;

Just know you're often in my thoughts,

And I hope you'll soon be well!

By Joanna Fuchs

"Keep Holding On" - Avril Lavigne

SUNDAY'S INSPIRATIONAL POEM & SONG FOR THE DAY!

DESIDERATA

Go placidly amid the noise and haste and remember what peace there may be in silence.

As far as possible without surrender be on good terms with all persons. Speak your truth quietly and clearly and listen to others - even the dull and ignorant. They too have their story.

Avoid loud and aggressive persons for they are vexatious to the spirit.

If you compare yourself with others you may become vain and bitter, for always there will be greater and lesser persons than yourself.

Enjoy your achievements as well as your plans.

Keep interested in your own career however humble. It is a real possession in the changing fortunes of time. Exercise caution in your business affairs for the world is full of trickery. But let not this blind you to what virtue there is. Many persons strive for high ideals and everywhere life is full of heroism.

Be yourself, especially do not feign affection. Neither be cynical about love; for in the face of all aridity and disenchantment, it is as perennial as the grass.

Take kindly the counsel of the years, gracefully surrendering the things of youth. Nurture strength of spirit to shield you in sudden misfortune. But do not distress yourself with imaginings. Many fears are born of fatigue and loneliness. Beyond a wholesome discipline be gentle with yourself.

You are a child of the Universe no less than the trees and stars. You have a right to be here, and whether or not it is clear to you, no doubt the Universe is unfolding as it should.

Therefore be at peace with God, whatever you conceive him to be, and whatever your labours and aspirations in the noisy confusion of life - keep peace with your soul.

With all its shame, drudgery and broken dreams, it is still a beautiful world.

Be careful.

Strive to be happy

Max Ehrmann (1872–1945)

"Angel" - Sarah McLachlan