Friday, December 12, 2014

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!



Sunday, November 30, 2014

HAPPY THANKSGIVING (A BIT LATE)!

I have so much for which to be Thankful, I hardly know where to begin. My thanks and gratitude are in endless supply. I am SO thankful for my lung transplant and the Gift of Life I received a mere 3 1/2 weeks ago! It is truly astounding and not something I find easy to put into words. I am thankful my surgery went as smoothly as it did; that I had one of the top surgeons operating on me.
My FAMILY - well, there just are no words to express how grateful I am to have such a loving, supportive, encouraging (even when it must have been hard for them to do it for me) family that lifted me up and helped carry me through this journey, which is by no means over. In some ways, it's just beginning. They have STEPPED UP big time to help me and I love them all dearly.
To so many friends who have visited, driven, made meals, called and just listened when I needed it. I am so grateful!
This Thanksgiving is special on so many levels. Having had to be re-admitted to the hospital this past week due to some post transplant medication side effect issues, and being discharged just in time for Thanksgiving just adds to my happiness.
With much happiness, gratitude, and thanks, I want to wish everyone a Happy Thanksgiving!


Happy to be at Home on Thanksgiving


Thursday, November 20, 2014

356 DAYS - MY JOURNEY TO TRANSPLANT!

Where to start.  Well, marking days on a calendar to track important events is something many of us do. To remind ourselves to do something, to remember important events. Well, I have been marking days on the calendar for the last year hoping that the most important date of all would show up in time. Unfortunately, the single most important date of all was impossible to put on the calendar. It was completely out of my control. 

I like control; those of you who know me well, know this. I dislike not knowing or not having control over most situations and have a difficult time dealing with it when that is the case. I’m getting better at this and if it’s one thing this journey has taught me, is well:

Sometimes we just have to suck it up and deal with it!

This has been a journey of the type I honestly find difficult to explain. I think, if you were to ask my family, watching me deteriorate at a very rapid & scary pace, unable to breathe, needing oxygen 24/7, barely able to speak let alone get out of a chair, I think they would tell you watching me has been hell on earth for them. Suffering through it has been no walk in the park for me either. Anyone with chronic illness and disease knows this, I am not special in this regard, but this Blog has always been about my journey, how I got through it, my successes, feelings of hopelessness, yet never giving up. A real mixed bag of emotions.

Dates I will never forget:

November 12, 2013: The day before I was fine (well as fine as anyone with IC on Disability can be). Then I wake up on this fateful morning coughing and wheezing. I figure I have a cold and will just have to ride it out. Great, a cold on top of my IC; just what I wanted. Weeks go by with repeated visits to my Primary Care doctor, moving up the scale from 1. it’s a cold; 2. well, maybe bronchitis - negative; 3. Probably pneumonia - negative. Next move, go to the hospital.

December 2-9, 2013: I was admitted to my hospital for testing and ended up there a week. I was assigned one of the most wonderful Pulmonologists (let alone doctor of any specialty). Throughout the course of that week, they threw the book at me test-wise. Yet my Pulmonologist said all the results were inconclusive, but felt it was likely Adult Onset Asthma. Discharged with many meds to treat that. Wrong. 

February 11-13, 2014: Between December and February I saw my Pulmonologists many times and each time, my symptoms were worse than before. He no longer believed I had Asthma and he referred me to multiple specialists who all thought they had their finger on it. Wrong again.  So my Pulmonologist calls me to say that he has a colleague up at Mayo in Rochester, MN who is willing, as a favor to my doctor, to see me and evaluate me! No problem; family goes into overdrive getting tickets and hotel reservations and I’m up there in1 day. What an amazing place! No wonder it has the reputation it has; my experience was amazing and everything ran like clockwork, having all the testing in the morning and then after lunch meeting the doctor to review the tests. I’m thinking he will have figured it out and prescribe treatment and I will go home and get better.

WHOA there! 

February 12, 2014 - Diagnosis is Idiopathic Bronchiolitis Obliterans. WHAT? It’s incurable and I will need a lung transplant if I am to survive! I just stared at him. How is it possible in a mere 3 months, I go from being fine to needing a lung transplant?!?!? They don’t know or understand it themselves. It’s rare, though they’ve seen it. A date I will never forget!

March 17-22, 2014 - Admitted to the hospital due to severe respiratory distress. My Pulmonologist comes to visit me, sits by my bedside with my Mom and delivers the news no doctor likes to deliver. I need that lung transplant or I am out of options. Well, at this point, one of only two hospitals specializing in lung transplants where I live in Chicago has turned me down and won’t consider me for one; says I’m too complicated. There is only one option left. My doctor promises to keep calling them until he gets through to them. Boy, did he fight for me!

April 1, 2014: I finally get an appointment with the Transplant Doctor at Loyola University Medical Center. It was a sobering appointment. They don’t sugar-coat what having a transplant entails: the good, the bad, the ugly. And it includes ALL of those and more. But at least he would take my case to the entire Transplant Team and they would decide whether to accept me. There would be further testing to do and once that was completed, they would make their decision. None of this moves fast. In fact, when your life depends on it, it could not seem to move more slowly. Another date I will never forget.

June 10, 2014: The call finally comes. I have been accepted and am now listed on the UNOS Transplant List! I cried tears of joy! At least now I had a fighting chance. Without this, there would be no chance. But as happy as one is to be listed, now it gets hard again as the waiting for “MY” lung to become available starts. There is no “date” that I can put on my calendar that says “Lung Transplant Day”. I must simply wait and hope that the call comes in time. Again, not easy for a control freak like me. But wait I do while watching the days on the calendar tick off.

In the meantime, I am required to go to pre-transplant Pulmonary Rehab, which was brutal and required much oxygen to get through it. But I did it! I told Loyola I would do everything they threw at me if it meant I could get my transplant. 

Tick, tock. The days on the calendar move slowly yet rapidly all at once. I get a call to come to Loyola as a “Back-Up” for a potential transplant. So off we go, only to discover, as I was the back-up in this case, the person in front of me got the lung and I could go home. This time my expectations were low so I was not too disappointed. Then in September I get called to come again and off we go to repeat the routine we went through before. We’re hopeful. Unfortunately, upon receiving the organ at Loyola and further examination, it was deemed “not worthy” of transplant, so I get sent home again. This one was tough to take.

So, the wait starts all over again. Every phone call that rings makes us jump. Is this the call? No, not today. Day after day, no phone call and each day that goes by with no phone call, gets harder and harder. You begin to doubt it will ever come. Staying strong through this is proving more and more challenging. But I want my transplant. So I continue my rehab and try to believe my turn will come in time. 

September turns into October and no call. Doubts and fears creep into your thoughts. Time is running out. Try to keep the faith.

NOVEMBER 2, 2014 - 11:30PM: I am getting ready for bed. Turning off the TV and my laptop when suddenly my cell phone rings. By now I know a Loyola phone number when I see one and this is Loyola! 

Mom hears the phone ring and comes running down the hall. Who would be calling at this hour on a Sunday, right?

Yes, it’s Loyola and my Transplant Coordinator telling me they have a lung for “ME”. We are to get to Loyola as SAFELY but quickly as possible. I am told that this looks good; my hopes are high and with good reason.

This time when we arrive at Loyola, the process is moving much faster. They are putting me through the process very rapidly. 

It’s what I’ve been waiting for but it’s scary, exciting and nerve wracking. But I want it. I am with my family and we decide to to send me into the O.R. with our favorite positive family saying ‘It’s All Good!”. 

And off I go to the O.R. Much of the first few days are a blur and my family has had to fill me in. But I woke up happy, smiling (well, once the intubation tube was pulled) and breathing! 

YES, 356 DAYS AFTER WAKING UP COUGHING,  I GOT MY TRANSPLANT!

My family tells me that the actual implant date is MONDAY, NOVEMBER 3, 2014! Put THAT on my calendar!  My family tells me it’s my “Re-Birthday” and we will celebrate this date too!


356 Days. 9 days short of one year to the day, I received the Gift of Life and I am so blessed, happy and grateful. Now, as I work at staying healthy and doing all I am supposed to do to keep my new gift healthy and strong, the next journey begins. 


                                                                          



Sunday, November 2, 2014

SUNDAY'S INSPIRATIONAL QUOTE & SONG FOR THE DAY!

While I struggle to cope with this lung disease and with waiting for “THE” call that never seems to come, I work hard to keep fighting to stay strong. I don’t win that battle every day, but there are days I do. So for the days I feel strong and to help on those when I do not, I found this poem very inspirational.

You may see me struggle 
but you won't see me fall. 
Regardless if I'm weak or not 
I'm going to stand tall. 
Everyone says life is easy 
but truly living it is not.
Times get hard, 
people struggle
and constantly get put on the spot. 
I'm going to wear the biggest smile 
even though I want to cry. 
I'm going to fight to live 
even though I'm destined to die. 
And even though it's hard 
and I may struggle through it all. 
You may see me struggle...
but you will NEVER see me fall.

(Source: http://www.familyfriendpoems.com/poem/you-will-never-see-me-fall#ixzz3HvVyzSyj 
Family Friend Poems)


"I Will Not Fall Down" - Tim McGraw



Thursday, October 30, 2014

AT A LOSS FOR WORDS!

I haven't written in quite some time. For the first time since I started this Blog about Interstitial Cystitis, I have found it difficult to write. When battling IC and Volunteering as a Patient Advocate, I felt motivated and easy to find topics about which I wanted to write.

Since being diagnosed with Idiopathic Bronchiolitis Obliterans last February, and being told I needed a Lung Transplant, it has become harder and harder for me to find topics to write about without sounding like all I was doing was whining.

This is a journey unlike any other. I know there are others out there who are transplant patients that can relate. Much like when I Blogged about IC, other IC patients could relate. There are many people struggling with multiple serious and life threatening conditions. So I don't want to just write about how miserable I am. But I find it difficult and so I don't write.

I must go to Rehab every Tuesday and Thursday until I get my transplant. It's rough and I come home from each class feeling like I was hit by a truck. There are never ending appointments and tests to be done and getting anywhere takes a village with all the portable oxygen I need to take with me and the need for a wheel chair.  It's exhausting.

Now I got a call that I have to have another Angiogram in November. It's a UNOS requirement that certain tests be repeated (if they have not already done so) every six months. So it's already time to repeat this test. Let's get that done and over with as soon as possible. I can't believe it's that time already!

I'm told my Lung Allocation Score is good and the UNOS system is "looking" at me all the time but just hasn't found a match. The Transplant Team feels good it will come. I like their confidence because the longer I go without getting the call, the harder it is to feel confident. But I want to, so I try. Some days are better than others.

Emotions are all over the map, but they tell me I wouldn't be normal if that wasn't the case.

I have been at a loss for words.

I am doing everything they throw at me in order to get my Transplant. So let's get that Angiogram done. Got my flu shot today, Rehab Thursday today. Taking my meds as I am supposed to etc. Being the best compliant patient one can be!

I feel at a loss for words beyond expressing the same thing all the time. This is hard. One day at a time is all I can do.




Sunday, October 12, 2014

SUNDAY'S INSPIRATIONAL QUOTE & SONG FOR THE DAY!


As I wait for the call to come, I am constantly struggling to keep hope alive, so that's why I chose today's Inspirational Quote.

"Shine the Light" - Sugarland





Saturday, October 11, 2014

I'M TIRED!

I'm tired. Physically tired for so many reasons. I don't sleep many nights from side effects of medications. This disease is exhausting; just trying to do anything leaves me gasping for air even wearing my oxygen and with it turned up. 

I'm tired. Mentally tired of battling the never ending fight of trying to staying positive that I will get my transplant in time. My Transplant Social Worker tells me this is perfectly normal and I shouldn't beat myself up for not feeling positive every minute of every day.

I'm tired. Tired of waiting for the call to come that never comes. Every time the phone rings my heart skips a beat and it's never the call. On the one hand time seems to have come to a complete standstill, while on the other I am rapidly approaching the one year mark when I came down with this awful, life threatening disease. How did THAT happen!

I'm tired. Tired of the never ending trek to Rehab twice every week until I get my transplant. Of course it's necessary and so I go. But it's exhausting and I come home each time feeling as if I was just hit by a truck.

I'm tired. Tired of the never ending doctor appointments and tests, being poked and prodded.

I'm tired. Even if I had a "good" night and actually slept, I get up, get dressed, have breakfast and seemingly minutes after that I find myself falling asleep and fighting it all day long. When I want to sleep I can't, and when I want to stay awake, I can't. So I'm tired.

I could go on but I'm sure I've made my point. I'm tired. I don't want to sound like a whiner; there a lot of people struggling with many different diseases who are fighting every day much the same as I am. I am blessed with a wonderful and supportive family. I am grateful for that.

But I'm tired. I no longer remember what it felt like to be well; to take breathing for granted. I'm tired.