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.








Monday, October 6, 2014

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!




Sunday, September 28, 2014

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.

Sunday, September 21, 2014

MAN, THIS IS HARD!

Staying positive. Man, this is hard. I've had a super rough week and felt myself sinking in the swamp of negativity. 

It started with Rehab this past Thursday. I got home and did not feel well at all. They are pushing me, I am trying to push myself so I regain as much muscle strength as possible and I feel I overdid it. By the time I got home I was struggling to breathe, was in pain, exhausted and could hardly hold myself upright. I went to bed that night and for once I actually fell asleep right away.

Thursday, midnight. The house phone rings. Mom comes to tell me it's Loyola calling for me. They have a lung and I should leave for the hospital right away. So the family plan kicks into high gear and we gather what we need and get on the road to the hospital. We were instructed to go to the E.R. and tell them I was there for a Lung Transplant and when we arrived I was whisked right through, taken up to a floor and, as before, preparation for surgery began. Put on the hospital gown; put in TWO I.V.'s, draw blood, get a chest X-Ray and meet with the anesthesiologist. I felt very encouraged after talking with the anesthesiologist and we were all expecting this time was my time.

Of course, as we all know, they always warn us there is a chance it might not happen, and the fact that I am writing this Blog should be your first clue that I did not get my transplant that night. By 6A.M. the Transplant Coordinator called and said she had bad news. The lung was not worthy of being transplanted so I would not get my transplant tonight. I could go home.

The last time I was called in, I was a back up and had no expectations. But this time, the call was for ME. This was to be MY lung. Everything seemed to be going according to plan. I actually began to believe it would happen. So when it didn't, it was a lot harder this time than the last.

They moved quickly this time to let me get out and get home. The I.V.'s were removed and I got dressed and we headed out for home. I got to bed around 7:30AM and slept for several hours.

Friday was a hard day for me. I was very down in the dumps. I really felt this was my turn and the disappointment hit me hard.

Yesterday was not a good day. I felt physically worse than ever. I couldn't breathe, had a headache, felt sleepy even though I had slept well the night before. I nearly fell down on my way back from the bathroom I was so wobbly. 

Time for me to dig deep. Dig deeper than ever before. I must climb out of the swamp of disappointment and negativity and muster the power of positive thinking. So I've been working on putting together a Positive Affirmation, using listening to my music to lift my spirits. Before bed, I asked my Mother to take my hands and together we repeated three times: "I WILL get my transplant!"; "I WILL get my transplant!"; "I WILL get my transplant!". I am going to do this every night before I go to bed until I get my transplant.

I typed up my positive affirmation and it sits by me on the table next to my chair where I can see it all day and reflect on it as often as I want. This is it.

My Lung Transplant WILL happen;
I am strong;
I can heal;
I am healing;
I am  getting healthier;
I am getting better;
My health is improving;
I am healthy;
I am peaceful.


It's been a rough week for sure. It feels like I'm sinking in quicksand. But I am doing everything I can to stay positive. 

Man, this is hard.

"Think Good Thoughts" - Colbie Caillat





Monday, September 15, 2014

FINDING THE POSITIVES!

It's hard to find positives as I go through this Lung Transplant journey. Of course, the most important positive is that I was accepted as a transplant candidate so that's good.

But after that, it's hard for me to make a list of positive things. Of course, they're there if I stop and think about it. It's just very difficult to find them through the fog of pain, fear, shortness of breath, and the never ending waiting for THE call to come.

Well, I actually got very happy yesterday when I weighed myself. As many know who have ever been prescribed Prednisone, one of the lovely common side effects is weight gain. When you are given super high doses for extended periods of time, it really packs on the pounds. It didn't matter how hard I tried to stop the weight gain, it just kept coming. When I was in the hospital being evaluated to see if I would be accepted for a transplant, I met with the Transplant Dietitian. My instructions were to try to at least lose 10 lbs. By then I had been stepped down to the mandatory low dose of Prednisone required for all transplant candidates so I was told that should help make losing the weight easier. 

Being a compliant patient and wanting to do everything possible that I could so I would be accepted, I attacked the diet full force and have been working at it since I was discharged from the hospital back on May 3rd.

I am happy to report that I have now lost a grand total of 20.9 lbs.! I am so proud of myself. Being on this medication regimen, not able to exercise made it hard to accomplish this goal, but I did it. I called my Transplant Dietitian today to report in and she gave me an enthusiastic "atta girl!" She even told me to stop trying to lose weight and now I am supposed to work on maintaining my weight! WOW! That was good news! So there's another positive!

So I got that going for me. It does make doing the Rehab easier than when I started which is good. Another positive.

I got to see my Interstitial Cystitis doctor last week and get some much needed bladder treatment which was a big positive. My IC has had to take a back seat to my lung disease and I've just had to suffer through the pain. Even though it's very challenging I am going to resume doing at home treatments (bladder instillations). These are very helpful and while it takes a lot of energy for me to mix them up and administer them to myself, the relief is worth it. I'm going to give it a try and see if I can do these periodically. So that's a positive - well, for the time being.

My sister-in-law from California flew in over the weekend to visit me and that was a huge positive. My family is just rallying around me and showering me with support and love. I am truly blessed. The biggest positive of them all - family!

The list may not be long, but the positives are there. I have to focus on those to help get me through this most challenging of times. This waiting is SO hard, but wait I must. So in the meantime, I need to focus on the positives to help get me through.

The Positives.  They're there. I just have to look for them!