A RETURN TO MY IC DOCTOR!

Since coming down with this mysterious lung disease began, I have been unable to go see my IC Doctor. It was just too much; dragging along all that oxygen and it took 3 people to get me there. I couldn't sit in the waiting room not knowing if I would run out of oxygen even though we'd brought all I had. So I just had to stop going for treatment. Doing my at home instillations became too difficult. I literally didn't have the strength to mix them up then administer them to myself. I managed to continue to self-catheterize throughout this lung journey, but it wasn't easy.

Ever since this whole thing began, my IC has not been happy with me. But I just had to learn to live with it. My lungs were taking control of everything and trying to care for my IC became impossible. I learned to just suck it up and deal with it as best I could. 

Well, it's 3 months post transplant and my Transplant Doctor has given me the OK to start getting out and about (mostly to Rehab). So the first thing I did was make an appointment to go see my IC Doctor! What a welcome return to care that was! The entire office staff was giving me hugs and told me how great it was to see me. When the doctor came into the exam room, he gave me a huge hug! It was enough to bring tears to my eyes. He spent 45 minutes with me and wanted the entire transplant story, every detail, along with how it has impacted my IC. Has any or all of my transplant medication helped or hurt my IC? He even wanted to see my incision and check out my not yet healed wound. Then he checked my InterStim, did an exam and gave me my first instillation in over a year! AHHHHH!!! I know they don't work for everyone but they are my life saver and to not have one in over a year has been rough. It was like a gift from heaven when that instillation went in and my bladder has felt better these past few days. 

He is going to write to my Transplant Doctor and give her the full update on my IC situation, much detail regarding my status so they understand better what is going on with me, how the instillations work for me etc. I am so blessed with so many wonderful doctors. 

A Return to my IC Doctor was truly a blessing and I am so grateful to have him caring for me. I am encouraged that I am thinking I may be ready to start giving myself my instillations again at home. 

This week is one year since I came down with this mysterious lung disease and my Blog morphed into the journey through Bronchiolitis Obliterans, being told to get my affairs in order, but finally being blessed to received the Gift of Life and get my new lung. That journey is not over. There are bumps in the road we are treating right now. It's still scary and I am still not completely healed even though I am going to Rehab and told to start going out more. 

And so I am. I went shopping for new walking shoes over the weekend and I have an appointment this week to get my hair cut. I am making progress for sure. If we can just get the kidneys back on track and stop this rejection episode, I will feel much better.

But I have made much progress and I am grateful that I could finally make a Return to My IC Doctor! 

WHEN IC & OTHER ILLNESSES COLLIDE!

Since starting this Blog about my journey with IC, as most of you know if you follow me, this Blog has morphed into more about my mysterious lung disease that required me to have a lung transplant if I was to stay alive. So my IC took a backseat. This was much more serious, life threatening, scary as you know what and extremely debilitating. So I told myself that my IC would just have to "be". I'd have to just live with it as my lungs continued to deteriorate and my need for oxygen became more and more necessary and the amount ever increasing.

With my lung disease, my inability to breathe, even with oxygen, well enough to remain mobile became near impossible. As a result, what happens to sick people who can't get out of their chair or bed and continue walking or just doing their daily routines? You become de-conditioned and then you really can't do anything. It's a vicious cycle. The harder it is to breathe, the less you can do and the less you can do, the worse your de-conditioning gets and on the cycle goes.

My IC requires that I self-catheterize at least 7 times a day due to retention. It was never a problem, but continuing to do it when standing is near impossible when you can hardly breathe, and made it very difficult. I had to come up with alternative methods to getting this done. No small task.

Going anywhere was always a challenge with my IC as it was (as any IC patient knows); now with the need for oxygen 24/7, dragging tanks (even portable ones) was no small task. I needed a wheelchair to get anywhere we went, as getting from the front entrance of almost anywhere one goes, to where you want to be, was impossible as my condition worsened. When the Transplant Team insisted I go to Pulmonary Rehab in preparation for my transplant, I thought - how on earth will I ever manage that? But with help, I did it. However, my bladder couldn't get through an hour of rehab class, but I couldn't walk to the bathroom, so I'd have to get help, get the wheelchair and then hope I could self-catheterize once I got there. It took time away from class, was very tiring and I would have to increase my oxygen after I was finished. Then go back and try to finish my class.

The two diseases do not get along very well at all. I found I had to stop giving myself my instillations at home as it was just too much effort to get them mixed and then give it to myself being so de-conditioned; even with the oxygen, I'd end up huffing and puffing.

Being able to go see my IC doctor was too much effort. We did it once and that was the end of that. It was just too hard and took too much out of me. The same can be said for trying to go visit my Psychologist or any of my doctors. The amount of oxygen it took to get me to where their offices are, what I would need to be able to sit in the waiting room, get through an appointment, then get back home again took so much oxygen it was a major effort! (We also had to take at least one spare tank-we never went anywhere without at least one back-up tank in case of emergency, which proved necessary on at least one occasion-this was just so much work and took 3 people).

Since my transplant, as I recover, my IC is still a problem but for different reasons. As many know I am working very hard on my at-home physical therapy twice a week, plus doing the same exercises at least 3 days more by myself so that I can regain my conditioning.  But the exercises I must do cause my bladder pain to get worse. But I don't have a choice if I am ever to regain the strength I need to be able to just walk. Besides, the rehab is a mandatory requirement of being accepted as a Transplant Candidate. We are told "we are not giving you a new lung so you can become  a couch potato." It makes sense. As we all know, transplant organs, lungs especially, are very hard to come by. The Transplant Team isn't going to give a rare gift to someone who is just going to sit around and do nothing. They don't expect me to run a marathon, but I am expected to work at my rehab enough so that I no longer need assistance with daily living; so that I can do some level of exercise to keep my lungs healthy and my body in shape. So I am dedicated to following my orders and getting back in shape as much as possible. In fact, I am extremely determined. My bladder yells at me every time I do my exercises, but I just tell it to be quiet. It's even possible that strengthening my core will be good for my bladder and my IC. So I continue to work.

I know there are many IC patients with more than just IC who have to deal with multiple diseases that conflict with each other. I am not alone in this. None of this has been remotely easy. A lung transplant is the most difficult transplant (more difficult than hearts even) and also one of the hardest to recover from. Recovering from any kind of transplant is hard and there are always bumps in the road. We are told to expect them and they didn't lie; I'm struggling with several issues since my transplant.

All the medications don't help my IC either. One of meds is affecting my kidney function which affects urine output which makes my bladder hurt as the urine becomes more concentrated and causes the increase in pain. 

My IC and my lung disease have literally collided. It's challenging enough getting through a lung transplant and managing that pain. Then when part of your recovery requires exercises that cause your IC to flare up - well, to me that's a major collision. 

I don't have a choice. I could curl up in a ball and waste the Gift of Life I've been given  because it hurts too much to work on getting my strength back. Or I can choose to fight and be a compliant patient and do all I can to make this new lung stay healthy and keep the rest of me healthy too. Someone gave the greatest gift one can get and I do not take it for granted. Yes, it's making living with my IC even harder (I was already on Disability from my IC), but after what I've been through to get to where I am, it's worth the effort. 

So, while having two very serious medical conditions that are at odds with each other is no fun, sometimes I just have to tell myself to suck it up. I've had to tell myself that countless times as I go through the transplant process. I've had my moments. But my IC isn't going to take me down and I am going to do all I can to keep my new lung going strong.

Yes, some days feel like I've been hit by a truck. But then I remind myself I am still here, breathing and not needing oxygen. I know what it's like to be told I was dying unless I had a lung transplant. I am lucky and blessed. That "truck" will likely hit me again and I'll take it and remind myself why it's worth the fight!I get to live!

Live Like You Were Dying - Tim McGraw

TRANSPLANTS AREN'T FOR SISSIES!

Since I was given the Gift of Life and received my Lung Transplant on Nov. 3, 2014, my life has changed in many ways, many of them very dramatic. What I have learned, and yes, I was warned by the Transplant Team, is that Transplant isn't for sissies! We are told up front that there WILL be bumps in the road but that they can be managed. We must be ever vigilant to watch for signs, follow our medication regimes and all our instructions to the "T". When they say to take a certain medication 12 hours apart, they mean 12 hours! NOT 11 1/2 hours; NOT 13 hours - 12 hours! If they say take your medication with food, do it!

Well, let me tell you, since coming home from the hospital after my transplant, I've had my share of bumps (twice re-admitted to the hospital due to side effects from medications, just to mention a few!)

We are told that our bodies will NEVER - that's NEVER - accept our new organs. Our bodies are going to spend the rest of our lives trying to reject our new organ because it thinks it's an invading foreign object there to do harm, so without all the medications we are given and immunosuppressants, our organs would be rejected.

But along with all the medications (about $7,000/month) - I take about 60 pills per day - the thing is; they come with side effects. We are constantly having to have blood tests to find out how our liver function is, how our kidney function is, what our white blood count is; what is the level of this drug or that drug. It's a delicate balance and many changes are made to our medication routine. This means going to my pill box (which takes an hour to fill!) and either adding in or taking out medications that have either been added or removed. I have a 7 page list of my medications that I am constantly updating so I can properly keep track of what I am to take and when. This is no small task.

Recently I came down with a bacterial infection that is making me cough and is producing a very unpleasant green colored mystery goo that I had to take in to the lab to have cultured. Turns out it's a very unusual bacteria and there is only one antibiotic that can treat it and I'm allergic to it. So the call comes that I must come to Loyola immediately, get admitted and begin what they call de-sensitizing me to this drug so that they can give it to me to treat this infection. They prescribe a super high dose that I must take twice a day for 14 days. Shortly after starting it, all sort of unpleasant things start happening that I will spare my readers, but suffice to say we thought it was possibly a virus, but I didn't get a temperature. That's possible. Also, it could be side effects from the medication; there's no way to know for sure. So I suffer through these symptoms for nearly a week.  Apparently, transplant patients sometimes have their "thermometer break"; in other words, we can't get a fever, but we still have all the symptoms (body aches, chills, sweats etc.) So, it's a mystery trying to figure out what I've got. Oh, and after 14 days of taking this super-max dose of antibiotic, the infection isn't gone! So now I have to try to cough up another sample to take to the lab. I wish I could produce one on demand!

This morning I had to go for my weekly blood work which has to be done at 8AM. So I must get up at the crack of dawn because they require one blood test to be done at a specific time. So, we do that and I wait for the call from my Coordinator. This is how it seems to go lately. My liver function is not good; my kidney function is way out of whack; my white count is seriously too low and I need to report to the hospital tomorrow for an infusion that will take two hours; then I need to see a nurse for another test where they insert a tube down your nose and put saline in but you can't swallow (and try not to choke). So much fun. Then back to the lab at 8AM on Wednesday for more blood work to see if any of the things we are doing are working. 

Oh yeah, and let's not forget the wound on my surgical incision that won't heal that is requiring constant wound care at home and regular visits to the wound care nurse. 

And on it goes. Yet, I am one of the lucky ones. It is hard to go through all of this. It has seemed no sooner do we get one thing taken care of, another pops up. I've had my moments, but I'm lucky to be alive. And compared to some transplant patients, I've had it easy. There are some that two months post transplant (as I am) are still in the hospital due to complications. I was released 7 days after my transplant and my bumps have mostly been medication related. My Transplant Team is learning what I warned them about before my transplant: medication and I do not get along! I think they believe me now!

It's been hard, but I still feel lucky. But with that said, I'll say it again: Transplant Isn't for Sissies! And so I'm going to share some pictures that aren't for sissies either. This is my life as a transplant patient.

At Home Spirometry

(Or as I Call It; My Personal Torture Device)

My Pill Box

Surgical Incision

(Over 2 feet long)

Surgical wound that won't heal!

IT'S A VERY HAPPY NEW YEAR!

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

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

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

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

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

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

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

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

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

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

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

Auld Lang Syne - Mairi Campbell

IT'S A MERRY CHRISTMAS!

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

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

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

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

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

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

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

This Picture Is Truly a Miracle!

I ALREADY GOT WHAT I WANTED FOR CHRISTMAS!

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

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

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

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

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

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

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

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

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

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

MERRY CHRISTMAS

& 

HAPPY & HEALTHY NEW YEAR!

MY EARLY CHRISTMAS PRESENT!

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

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

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

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

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

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

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

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

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

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

My Medication Table!

My Pill Box!

My Spirometry Device!

Doing my Spirometry!

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

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'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

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'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

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.

HOW IT FEELS!

Today I had an appointment with my Transplant Doctor. He is encouraging that my transplant is coming, although as doctors do, it's always tempered with the warnings of "but you never know". I believe him; he has to be right. 

He answered all my questions. One lung not two. Left is first choice but they could do the right depending on circumstances. I don't care, just so long as I get one!

After that appointment I had to call my regular Pulmonologist to refill a prescription and I had some questions about oxygen so I asked to speak with his Respiratory Therapist who was kind enough to take the time to talk to me. After answering my questions, he made some very key points I wanted to share.

He explained that it's AIR that is not passing through my lungs properly, making it very difficult for me to breathe. I have been unable to describe what this feels like. He told me to tell people if they want to know what it feels like for me to breathe, try one of the following:

1. Layer 2-3 hand towels and cover your nose and mouth and try breathing for 5 minutes. No, really, try it.

2. Put a close pin on your nose and try to breathe through a straw (no cheating and letting any air in on the sides; tight seal).

3. I am moving air through my lungs at the same capacity as that of a small toddler. I am only using 35% of my capacity. 

That really drove it home to me and helped me understand what was going on inside my own body.

That's what it feels like to have Idiopathic Bronchiolitis Obliterans!

MUSINGS FROM A LUNG TRANSPLANT CANDIDATE!

I spend my days listening to the constant hum of the oxygen machine to which I am attached 24/7. At bed time, add the air from my BiPap to that noise. Makes going to sleep a challenge. Not to mention the side effects of my medication which cause insomnia. Sleep is elusive; sometimes it comes, sometimes it doesn't. Last night it didn't.

50 feet of oxygen tubing curled like a snake in my room that everyone is always trying to avoid tripping over, or even better, standing on and stopping the flow. I have to drag it around with me wherever I go, but am limited by how much distance the tubing gives me. I can only make it to the bottom of the stair case, so going downstairs means using portable oxygen but those tanks take over 3 hours to refill. With so many appointments I don't like using my portable oxygen at home; I want to keep those tanks filled and ready to go at all times. Trying always to avoid having the cannula yanked off my face; not as easy as one might think too!

Keeping track of the schedule of changing the nasal cannula, the oxygen tubing, washing the filters, adding water to the humidifier on the oxygen machine and the BiPap. Taking my meds. There is a never ending list of chores related to needing oxygen and being sick. If it weren't for my Mom none of this would get done!

The feeding tube the Transplant Team wanted me to have surgically put in because of my swallow dysfunction requires daily maintenance. I'm not using it yet but it needs to be cleaned, flushed, rotated. Post transplant it will go into use. But until then, I must keep it clean.

Every time a phone rings our hearts skip a beat. Is THIS the call? No, not yet.

Dealing with a trip to anywhere is a monumental undertaking requiring portable oxygen canisters and since they only last so long, figuring out how much we need to bring, how to transport it, can I get switched over where I'm going or will I have to stay on my own portable tanks? Depends on where I'm going. My brother has become my "expert" at handling all the tanks and I have dubbed him "Tank Man". He is a huge help with this!

I try to distract myself. I'm working on positive affirmations, listening to music to relax and take my mind off of it. It's hard.

The days go slowly when you are waiting for something you so desperately need. It's worse than being a child waiting for Christmas. And yet, here I am already 10 months into this; I'm shocked by that! How did that happen?!?! Yet, here we are.

Coughing fits that seemingly never end. Pain, exhaustion, I can't breathe.

Tomorrow I have a doctor appointment that will require two people to help get me there and manage my oxygen. Tuesday and Thursday are always Rehab. Each week a repeat of the one before, marked only by which doctor I may be seeing.

I'm listening to the humming of the oxygen. And waiting for the call. 

***   ***   ***

Bronchiolitis obliterans is a disease that causes destruction and scarring of the small airways of the lungs. As the scarring and hardening of the lungs gets worse, it becomes harder and harder to breathe.

This condition is essentially irreversible and treatment is mainly supportive. The lungs can never return to normal.