Bucky Boy

I've tried to blog numerous times in the last 3 weeks.
Every time leaves me in a heartsick pile of grievous pain.

But I know I would be completely remiss if I did not write this memorial blog to my loyal and loving Bucky. I owe it to him for all the joy he brought into my life. I can't imagine my home without my boy, my baby. Being a very special needs kitty from the get go made me bond with him even more than any other of my loved pets. I could relate to him, both of us being diabetic and insulin dependent. In the end, it was the wretched diabetes that lead to his decline in recent months and ultimately, dying in my arms of heart failure.




My favorite photo of Bucky

After Ziggy passed away in 1999, we said 'no more kitties.' We wanted to travel, and not having a pet to care for while away for long periods of time, would make things easier.

in early Dec 2000, Jen got a frantic phone call from her friend Tara at work. She worked in a large office park next to a very busy mall. On her lunch break, a commotion of people gathered in the parking lot. A litter of very tiny kittens were left in the planter, in the middle of the lot. People gathered them up, Tara included. She brought the tiny black and white kitten to her desk and found a box to put him in. She immediately thought of Jen since she knew we were cat lovers. "What do I do with him?" Tara asked. Jen was at my home when she called, so we offered to drive over to her work and care for the baby until she got off work.

When we looked in the box, there was Bucky so tiny cowering in the box corner. I knew immediately that he was too young to be away from his mother. We quickly put the box in the car and drove to my vet. I knew he didn't have long if we didn't act fast to feed him. The vet said he appeared to be 3 weeks old, weighed 5 oz and needed a special kitten formula, fed from a bottle every 2 hours around the clock.

Tara knew she couldn't fullfil the kitten's needs, living alone and working full time. I offered to care for him until he was weened. Tara said she would keep him after that time passed. Little did we know, that Bucky had other plans.

He soon learned how to eat from the bottle, biting the tip of the bottle nipple off so he could get more formula faster. LIke clockwork, he cried about every 2 hours to eat. He slept in bed with Terry and me, curling up next to Terry who threw off more body heat than me. He grew and grew, and got under our skin. He explored our home, and played like a little wild lion. He slept in Terry's office chair as he worked and sat on his desk, fascinated by the computer keyboard and moving mouse. The days turned to weeks and there would be no way we could give him back to Tara when the time came, she knew too. We named him after the smart alec cat from the comic strip 'Get Fuzzy.' Yep, Bucky was home.

As he began to transition to going outside, he befriended the neighbors and their pets. He loved to play with the other cats and followed dogs out for their walks. He actually intimidated many leashed dogs, as they turned their heads to watch a cat following them. He soon 'owned' the street, welcoming himself to everyone's yards, but they didn't mind. They all liked Bucky and affectionately called him "The Hooligan."

About the time Bucky turned 6, we went on a month long vacation. When we returned, Josh mentioned to us that he had noticed Bucky drinking more water than normal. After a few days of observation, his drinking and peeing escalated to non stop. I knew by his actions, that he could be diabetic. I took him to the vet and it was confirmed. His blood sugar was over 500!!

The vet asked us if we wanted to put him down. He explained that most people don't have a clue how to monitor a cat with diabetes or the time to do it. Also cats usually didn't do well once diagnosed and usually don't last a year. Of course I didn't want to put him down, I was more than willing to take care of him for as long as it took. If me, as a diabetic, couldn't care for him, nobody could.

Bucky seemed to do fine with his diabetes. If we noticed him starting to drink and pee a lot, I'd gradually increase his insulin. Over the years his dose went from 1 1/2 units to 5 units, twice a day. I knew how to gradually increase it as the disease progressed and his insulin resistance increased. The vet was always pleased how well Bucky fared. Bucky was a regular at the vet, spending days on end having his blood sugar monitored all day at the vets periodically and he hated it.

We had noticed in the last 6 months that Bucky was really slowing down . . . not wanting to jump, walking slow, wanting to sleep more, just generally lethargic. He had an infection and surgery on his forehead a couple months ago, and he slowed even more after that episode. His breathing became heavier and we knew that he probably didn't have much more time.

Saturday evening April 9, his breathing became labored. He didn't seem like he had any pain, but was uncomfortable. I called the after hours vet at 8pm and they said I could bring him in, but that they would just monitor him in a cage overnight until the vet came in Sunday morning. I knew I couldn't do that unless he got really bad. He would be much more comfortable staying at home.

I stayed up with him all night, comforting him. Neither of us got any sleep. I could hear liquid in his lungs and he couldn't lay down anymore without gasping for breath. He sat up all night with me trying to make him comfortable.

At 8am Sunday, we took him in knowing that it was the end. The vet xrayed him and his lungs were full of liquid, he was experiencing congestive heart failure. I held him while they got things ready for him to be put down. But the stress was too much for him, he died in my arms before they could ever give him the shot. It was the saddest moment I have ever witnessed. I still have nightmares about it. I think it would have been much better had he gotten the shot and went peacefully. :(

I will always remember how he loved me unconditionally even though I was the one who took him to the vet, bathed him, shaved him, gave him the majority of the shots and other medication, and all the other things he hated. He still wanted to sit on my lap in the evenings for his daily dose of love. He followed me around the house as my shadow, to see what I was doing. He waited for me at the bottom of the stairs, looking up in anticipation to see when I would appear, to come downstairs. He knew my words, "Good boy" and would respond by contentedly closing his eyes, knowing he was. He head butted and rubbed my legs, owning me as if to say, "You are my Mommy."

Bucky forever changed our lives . . . we will always love and miss him.

Rerun

It's time for a blog rerun.

I wrote this little ditty a couple of years ago, but it is so appropriate for a rerun.

Only now, it's 2 against 1. My kitty has become an old, snoring man like Terry. He often sleeps in our bathroom on the rug, his snoring amplified and echoing in the hard surface bathroom.

Terry and Bucky snore in stereo, to the tune of annoying.

    Even Steven

    We both open our mouths,

    And make a noise,

    That neither one of us enjoys.

    I cough,

    You snore,

    We're even.

    I complain,

    You complain,

    We're even.

    Even Steven.

    That is all.

No News is Good News?

Not always.

I've been in a major funk.

A funk that is hard to explain and overwhelming at best, both mentally and physically. I just want to crawl into a hole and hibernate until the storm passes. I've been in this state a few times before in my life. One in which I isolate myself from friends and family, not wanting to spread my gloom or let people see me like this.

Writing becomes difficult as well, my mind unable to concentrate on the smallest of details let alone forming coherent sentences and thoughts. So there you go, the reason I haven't posted in a while. I'm gradually coming out of the hole, the holidays helping somewhat.

I've dodged the hospital since August, but my disease is changing. My left lung fills up with gunk that just won't come out. I feel like my body is trying to physically cough up my water balloon filled left lung. It's exhausting, frustrating and at times I feel like I'm drowning. No amount of IV antibiotics will stop the gunk production in a non functioning, sorry lung. Dr. R has had me on 3 weeks of oral Zyvox to keep the bacteria at bay, hoping to get me through the holidays without seeing the inside of Casa USC. The Zyvox itself makes me feel like crap too with several unpleasant side effects, adding to my misery.

Thank you to everyone who has inquired about me.
I know when I don't update the blog, people wonder and worry.

I'm hoping the New Year will yield better days ahead and more bloggety-blogging.

Happy 'Funk Free' New Year!!  :)

The Whirlybird Epiphany

One week of IVs under my belt and I'm feeling much better. Both my lungs and sinuses have cleared of most of the infection. Although, the CT scan revealed that my sinuses are still a mess. Tomorrow I'm having sinus surgery to clean out all the infected gunk that clogs my breathing. The Transplant team wants it done now, so I'm good to go if the call comes. I'll be starting September with a clean slate. :)

And then . . .

It came out of nowhere. 

The chop, chop, chop sounds grew closer and louder. 

As I sat in my 6th floor hospital room, the sound is deafening as the helicopter lands just 2 floors above me. There is only one reason a chopper lands on the USCUH roof . . . transplant. Weather it be kidney, liver, heart, lungs, whatever organ needs to be transplanted, the precious cargo is often helicoptered to the hospital. 

And again, it came out of nowhere, the flood of emotions I felt as I heard that chopper land. I sat upright . . . listening, tears welling up in my eyes. A weird, surreal feeling of terrifying urgency, nervous excitement and sadness overcame me. Someone had just lost their life, yet someone else is getting a second chance at life. All because of the most awesome, priceless gift of organ donation. 

Little did I know, the mere sound of that helicopter could open up all those barebone raw, insecure thoughts and feelings of being listed. Scared, unknown, no it's not time yet, what if, and on and on. I thought I had completely worked through every thought in my head. Clearly, I have more work to do. Then I think, do I ever come to the absolute place of acceptance, that this is how it is?? I don't know. 

I do know this . . . someone in this hospital got 'THE' call of life. 

Someday, that someone, will be me.

Casa USC

Well, it's been 3 months since I've stared at 4 walls and the clock at USC. The good news, they have remodeled our floor since I was in last. New paint, floors, bathroom fixtures, flat screen tvs with a real remote, and new visitor chairs. So now I have 'new' stuff to study for 2 weeks. :) Yes, it is THAT boring. Thank God for wireless internet or I would go stir crazy. Plus, I sneak out of my room to sit outside by a large fountain, shade trees to relax and soak up some fresh air and sunshine. It is the highlight of my day.

I just haven't felt good for over a month now, slowly getting worse. At my clinic appt. last Monday, Dr. R said if I wasn't better by mid week, to plan an admit for Monday. It's all prearranged, I just need to wait for a call from the hospital tomorrow letting me know what time my room will be ready.

My sinuses have progressively gotten more clogged and infected in the last six months. My last surgery was 2 years ago, and it made a huge difference. Since Dr. R is admitting me, he wants me to have an ENT consult and CT to see if I may need sinus surgery again. It will be my 7th, ugh. He also wants my sinuses in good shape going into transplant. With all the problems I've been having, I suspect I will  have surgery scheduled while in house. More CF fun!!!!

One thing I am looking forward to, I'll have plenty of time to work on my family tree, so for that alone, it will make my stay tolerable. My ancestors dating from the 1600s will keep me company. : )

Officially Official

Yep, yesterday was the day.

8-9-10 . . .  a memorable day and easy to remember.

I had my CF clinic visit and had a great clinical visit and heart to heart talk with Dr. R. He is not only a great Doc but a caring, communicative, 'hearing' doc. He listens to what I have to say, understands, and takes what I have to say to heart.

He understands my point of view concerning transplant. My feelings of timing and the question if the time is right for me. He knows my hesitant thinking, being always told I was such a healthy CFer. It's been drilled into me, since day one of diagnoses, that I was different, healthier, and well, indestructible, (so I thought, he he). 

Dr. R is great at explaining from a clinical point of view, from a doc's eyes, how fragile and precarious, the state of my lungs are in. He looked at me, saying, "I don't want you to miss your opportunity to list. If you wait too long and your health takes a turn for the worse, you could slip out of the prime window of listing." He said since my left lung is virtually non functioning, I have no reserves if my right lung decides to go south. In other words, I'm a ticking time bomb.

I've told Dr. R  I'm a realistic, tell it to me straight person. I want no sugar coating or beating around the bush. My mind wants to know what is at hand, turn the situation over every which way I can, analyze and re analyze, and come to a conclusion, of what is right for me. Then and only then, can I come to terms and face whole heartedly what I need to face.

I'm there. 

I need a lung transplant. 

I embrace it. 

I'm ready.

After a surreal couple months of evaluation testing, doc visits and mostly my mind analyzing, the time is here and now. I'm on board 1000% and optimistic that the outcome will be great.

As of 8-9-10, I'm officially listed for a double lung transplant. 

Let the waiting begin.

Impressive!

Wow, what a word. I've always associated 'impressive' with something totally spectacular, like seeing an incredibly awesome medieval castle or the Eiffel Tower for the first time. I've certainly seen my share of impressive sites and know them when I see them. 

I'm probably one of the most unimpressive people around. I don't try to impress anyone nor am I easily impressed by others. Imagine my surprise when the word impressive was used to describe me, or something about me. It completely caught me off guard, in an unexpected situation. When all was said and done, the word 'impressive' used to describe me, left me, well, impressed. And definitely, made an impact on my thinking.

Today was my surgery consult with the Transplant surgeon, Dr. H. This appt. is the last stop before listing for transplant. After all the testing, many appts meeting the whole transplant team, this is it, the day of reckoning.

Dr. H came into the room, introduced herself to Terry and me, and first thing out of her mouth, "You don't look sick enough for transplant." HA!! Exactly what everyone says. But she assured me, I would not be there, sitting in that room, talking with her, if it was not necessary for me. She had read my case, history and entire file, so only had to ask me a few questions about my wedge resection in 2000. She explained a few things about the antibody issue I have in my blood that could possibly reduce the number of donors I could match too. The antibodies could also change and go away, if the antibodies were showing up because of an infection or virus I had at the time of testing. 

She then proceeded to describe the whole Tx process from getting the call to exactly how the surgery is done, what to expect, pain management, recovery, medications, post check ups, etc. Most of the info, I knew already from many online CF friends who have already had Tx. Nothing she told me surprised me at all. In fact, having already gone through a lung surgery, I probably have a sense of what I'll be going through to some degree. 

The surgery and recovery itself does not scare me. The whole issue with me is TIMING. Like my healthy appearance, I still don't feel sick enough for Tx. I want to get the most use out of my own lungs, before resorting to Tx. I know it is in my future, but not sure if it is time, now.

I told Dr. H that I had seen my CT scan and even with an untrained eye, I could tell that it was ugly. I then proceeded to tell her how I felt about timing. She looked at me and said, " You have B blood, the most uncommon blood type. You have an antibody issue that could reduce the donors even more. Your short stature, again limits the donors." Dr. H tilts her head, raises her eyebrows and says, " Your CT scan is IMPRESSIVE "

There it is, that word!!! 


My mind quickly raced. The word impressive has always been used in a positive light to me. 

Dumbfounded, I said, "Impressive, meaning what?" She said, "In the very worst way. Your outward healthy appearance, does not portray the seriousness of what is going on inside. You could be in for a long wait and there just are not many B donors. You are in good health and your recovery would be excellent. I would suggest to list now to increase your odds of a donor match. If you wait too long, when you're really sick, a donor may not be available to you at all. And that would be a shame."

Finally she said, "You really need to wrap your head around the idea that this is the best chance for you. And then, and only then, be on board, 100%. It is now your decision."

I told her I had an appt with Dr. R on Aug 9, in 2 weeks. I would like to discuss this with him one more time and mull over everything she has told me. She smiled and said, "Fair enough. I have a meeting with Dr. R in about a half hour. I'll let him know I saw you today and what you have decided."

I know what Dr. R will say, since he started this ball rolling. I already know what I must do, add myself to the list on Aug. 9. I just want to be with my familiar Doc and surroundings to make the final decision to go with it. 

The next couple weeks will be filled with some intense, thinking, praying, accepting, and 'wrapping of my mind.'
I want to be in a mental place of 'Yes, I need to do this now and I'm ready." 

I want to know that I'm ready to let go of my God given, impressive lungs. 

And ready for my mind to be impressed by a new set of shiny, breathing lungs.

A sunflower kind of day

In honor of my very dear Aunt Roseanne, I changed my summer blog design to sunflowers!!! Why? Because she and my favorite cousin Cindy, *wink, wink* from my Dad's side, came over for a visit and lunch Wednesday. They brought me a beautiful bouquet of tall, majestic sunflowers. I've been admiring them so much, forgetting how much I truly enjoy them. Their gorgeousness definitely inspired my creative streak to create my own version of summer-y sunflowers, love it. Thank you Aunt Roseanne and Cindy!! 

Our visit was, as always, awesome yet too short. We can never really touch on everything to catch up. We always have a ton to talk about between our kids, families, anything and everything. One common constant that always comes up is our memories of our childhood and family gatherings at our Grandpa's house. The incredible smells of his Italian kitchen still lingers in our memory. Attempts to duplicate his famous roast beef never live up to his secretive recipe, if there ever was one. His delectable cooking and tastes are forever lost in his grave.

Along the same lines, we both discovered our interest in tracing our family tree. Especially our Italian roots that almost seem illusive and mysterious. The stories we have heard over the years about our Grandfather's birth and upbringing are varied and confusing. The stories include him being an illegitimate baby, his Mother dying in childbirth @ 16, being adopted at a very young age, to him being raised by a stepfather. He refused to talk about his years growing up in Italy. We know for a fact he left his roots in Italy to immigrate to Colorado through Ellis island @ 20 years old on Jun 20, 1913.

My father and Cindy's father were brothers, both of whom had horrible childhood memories during the depression living in rural Colorado. Cindy's Dad, Uncle Pete to me, passed away when I was 13 (?) and my Dad was never close enough to my Grandpa to shoot the breeze about his past. Nor did my Dad really care to know. I asked him to tell me as much as he knows, which isn't much. For that, I regret never sitting down with all four of my Grandparents, to 'hear' their life stories. 

As I grow older, my 'need' to know my ancestry in more depth, has tugged at me since our 2004 trip to Germany, Austria, Switzerland and Northern Italy. We visited the small town of Castellamonte, Italy 40 miles north of Torino and just south of the French/Swiss borders. This is the last known residence of my Grandfather in Italy from his Ellis Island manifest. My need was further fueled since the day my Dad gave me the boat load of old family photos about 5 years ago. I know I have 100% Italian from my Dad's side, but my Mom's side is a mixed bag. I feel a sense of responsibility to learn as much as I can to pass the info on to my grandchildren. I don't want their ancestry and what I know to go to my grave like my Grandpa's recipes.

I also feel a inner calling to find out more about my CF genetic links, possible kids who were sick and died, most likely of CF. And boy have I found some, on both sides, who died of 'pneumonia.' 

I've been an absolute mad woman examining photos, notations on the backs, clippings, and memorial cards. The internet has been invaluable . . . I've googled, stalked other's family trees & dug into their family histories, delved into Ellis Island immigrant files, reviewed so many lists of names from death records, census, birth records, & cemetaries, and finally gleaned limited info on ancestry.com. Remembering stories relatives have told me over the years have filled in some of the blanks. 

In the end, I have learned a lot dating back to around 1800 on my Mom's side. But there is still much more to learn and discover. It's interesting that the reason that brought me to this place, my grandfather's Italian ancestry, still comes up with a dead end at his birth and death. I guess my Grandfather wanted his past to die along with his Italian recipes. But that doesn't mean my stubborn trait, that I inherited from him, will give up looking until I finally find some answers.

I'll find them, buried somewhere. :)

Busy, busy, busy!!

I can't believe this post has taken me 3 weeks to write!

I've been going non stop since last time I've blogged. Just when I think I have a spare minute to sit down and write, something else comes up. Lots has happened in the last month, both good and bad. So here we go.

Memorial Day Weekend - Terry's birthday and the big move. 

We went out to lunch at Red Robin with my Dad, as usual. Poor Terry didn't get quite the celebration he deserved with our house being torn inside out. This was the weekend Jen and kids move out. We felt like we moved too, juggling furniture in every room. 

Josh kindly gave up his condo for Jen and the kids to live in so that they could not only have their own space but also their independence. But mostly, the move was to help slow down the progression of my CF that has been crazy out of control. The 24/7 non stop kiddos, baby sitting and the germs they brought home, took it's toll on me. Something needed to be done, to keep me from the germs that always landed me in the hospital with yet another exacerbation. 

Jen and Josh hatched the idea my last hospitalization. When they approached me with the idea, at first, I said, 'no way.' It killed me that a decision made by my X SIL Brent leaving Jen and grandkids, uprooted and homeless, would also now leave Josh affected too. But Josh assured me, that he wouldn't have offered if he didn't want to help me, giving me the time and space to recoup my health. Clearly, something needed to be done, and in their minds, seemed like an easy option. I agreed to give it a try. So far, so good, I've been feeling MUCH better having the opportunity to rest when needed.

I had the last of my TX tests, the left heart cath, on Mon June 14. Since I went through a similar right heart cath just 3 weeks ago, I kind of knew what to expect. Only this time was outpatient. We left the house at 5:30am for an ETA of 7:00am. Checked in, up to pre op and turned out the first procedure was cancelled, so they were able to get me in early. Done, in recovery and out the door of the hospital @ 1:00 pm - fantastic! The Doc said my heart looked perfectly normal with squeaky clean arteries. He said he would have never known I had a lung disease by looking at my heart. Great news all around. At least I know my heart is in tip top shape with no blockages, leaks, or plague!!

This procedure though was much more painful in the days ahead. Because they went into the heart through the femoral artery instead of a vein, they had to put a closure device on my artery to keep from bleeding out. Constant hard pressure was put on the site for 15 minutes. The closure device stays inside and dissolves within 6 weeks. Boy is it still tender in that area. I hobbled like an old woman for almost a week with strict instructions to not lift, or climb stairs. Um my bed is upstairs??? So I very carefully made my way up, and only one trip a day for a few. :)

Saturday 6-19 was little Miss Audrey's 2nd Birthday!!!! I can't believe it, she is getting so big. So of course Jen had the party here, inviting family and friends. We had a great time, eating, visiting and watching Audrey open gifts. Terry and I got her a talking Jesse doll, which she absolutely LOVES!!!

Sunday Father's Day, took Dad to breakfast @ Mimi's . . . mmmmmm. Their breakfast never disappoints, we love it. Other than that, with Terry's son in Oregon, no other celebrations. Just a lot of clean up from the party the day before and getting back to normal.

I go for my first Tx appt on this Tuesday 6-29. I see the nutrionalist, financial and Dr. G, one of the 4 pulmonologists on the Tx team. Wednesday, my file goes to committee for review, and I should know if it's time to list or wait. But there is a problem that needs to be discussed and decided with the surgeons.

At my hospital followup 2 weeks ago, I asked Dr. R to please show me my CT and xray and explain to me exactly what he sees that made him decide it was time for Tx. Besides frequent infections, he showed me on my CT, frame by frame, how my left lung is pretty much non existent, about the size of my fist. My right lung has curved around, to almost completely fill up my chest cavity. It was ugly!!! He proceeded to tell me how complicated a Tx would be, because everything has shifted so much in my chest. More than likely my puny left lung, is fused to the chest wall and will need to be scraped out. Yuck!

I point blank asked him, "Are you telling me that maybe the Tx team can't even do a Tx on me?" He hesitated, looked very seriously at me and Terry and said, "not necessarily, but we need to find out now, before things get worse. Since I'm not a surgeon, and your case is unusual, I need their input as the best way to proceed." Great! So there is a chance . . . of it not happening at all.

This week can't come quick enough for me. I'm nervous about hearing the news the docs tell me, I hope it is what I want to hear. I don't think Dr. R would have said anything to me about the possibility of no Tx, unless I came out and asked. But I'm the type that wants to know the truth and what I'm dealing with, hard or not. I hate the not knowing, I just want to find out. I've had a feeling all these years that maybe my prior surgery could come back and bite me in the butt down the road. Well, here we go, I'm on the road. But I have to be grateful for the years of life that surgery gave me. After all, I wouldn't be here otherwise.

Yes, I am grateful and I am blessed. :)

The ' T ' word

I’m finally wrapping up my 2 week hospital stay. Between my PH diagnosis and testing, Emily’s death and now lastly, transplant, my mind feels like blubber and I’m still exhausted.

Transplant Evaluation.
Did I just say that?
Or did my head shake and wake me from a dream.
Maybe some sort of denial is preventing me from actually believing that my doc is suggesting it’s “T” time. Time to think about being listed for a double lung transplant.

Now I have always known that the transplant decision was in my future. But it always seemed so far off in the distance. A place I saw myself physically and slowly moving towards, knowing that the time would be crystal clear in my thinking. So why do I feel like the timing is not right? I don’t feel THAT sick yet. Usually, lung transplantation is recommended when a patient’s lung disease is so severe that their chance of surviving with their original lungs is estimated to be two years or less. Am I actually there? The lung transplant itself carries it’s own risks and set of survival rates. About 1/2 of recipients will last 5 years or more post transplant. So of course, it would only make sense that I would want to get the most use of my own God given lungs, for as long as they are still able to function. After all, they have given me 54 years, and counting, of life.

Yes, I have been pretty sick this year, with 4 hospitalizations in 8 months, which is too much. My left lung is at end stage lung disease, there’s just not much left to function. My right lung is still functional, still feels clear. But I, of all people, should know not to get to comfortable in that thinking. To think my right lung will carry me, for a while longer. De ja vu.

I was at that place 11 years ago, when MAC was driving, 100 MPH and taking me to the grave. I was dying and I knew it, I could feel it. I had all the symptoms of end stage lung disease . . . constant, unrelenting infection and coughing, fevers, chest pain, high heart rate, losing weight, couldn’t eat, no energy, couldn’t do anything! My left lung was consumed with MAC in places while my right lung was fine. Wedge resection surgery was my last ditch effort to remove all the life sapping sections of my left lung  . . .  hell bent on killing me. Lung transplant surgery was still a fairly new procedure at the time, so wedge resection was decided instead. My surgery worked, it restored my health and life, it was my saviour. It gave me 10+ years of quality life until now, some of the best years of my life. I never once regretted having that surgery, I’d do it again in a heartbeat. It was high risk at the time, but a risk I was willing to take. Either that or die.

The decision for my last surgery are the same reasons as for transplant now. My left lung will eventually spread the frequent infections to my right lung. My right lung is keeping me going at this point. It too is progressing downhill, just not as fast as my left. As Dr. R tells me, transplant (Tx) will be my safety net when my right lung begins to fail. It is a given guarantee that it will happen, just don’t know when. For now, Dr. R wants to play it safe, get all the Tx testing out of the way, while I’m still healthy enough and put me active on the list me when the timing is right. *shakes my head again*

The Tx coordinator and the Tx social worker both visited my room for introductions and some lengthy talks. They basically described the process, how it works, answered any questions I had, evaluated my mental stability and home life, wanted a complete ‘life’ history both medically and just in general how I’ve lived my life. This is so important because a Tx is such a life changing experience they want to make darn sure that I can mentally adjust to the changes and responsibilities of upkeep post Tx. I have many more meetings to be scheduled with other members of the Tx team, including the surgeons. All this will happen when my evaluation testing is complete. Then a determination will be made if the timing is right for me to be actively listed or wait a while longer. I just have to put trust in the docs that they know the right time based on my test results. Ugh, it is all overwhelming for me.

While I was in house, I got most of the physical testing I needed done.
Here are the tests I completed:
1. Complete PFT aka Spirometry. Pulmonary function testing measures lung volume, small airways, % of lung function, and liters of O2 I can take in and out in one big breath. A complete explanation is here

2. The 6 minute walk test. Simply, see how far and fast I can walk in six minutes, up and back in the hospital hallway. They also measured my O2 sats to see if I need supplemental oxygen. The lowest my sats went were 91, I passed. :) Anything under about 90, indicates supplemental oxygen may be necessary.

3. The blood sucker test. I call it this because the Phlebotomist from lab came into my room and stole about 22 vials of blood. A multitude of tests are determined by my blood. Blood typing for donor matching, kidney function, liver function, vitamin levels, drug and tobacco screens, and to rule out other maladies such as active chickenpox, TB, Epstein-Barr virus, hepatitis, herpes, AIDS, & HIV.

4. Arterial blood gas aka ABG. A blood test taken from an artery instead of a vein - ouch! ABG is mainly used in pulmonology, to determine oxygen and CO2 exchange levels in the blood related to lung function.

5. 24 hour urine collection. Tests kidney output and function.

6. Chest Xray


These are not my xrays. 
The left xray is of normal lungs, the right are CF lungs, they turn white when damaged.

7. Chest CT scan

8. Electrocardiography aka EKG. Used to measure and diagnose abnormal rhythms of the heart.

9. Echocardiogram with bubbles. Ultrasound of the heart while injecting saline microbubbles into the venous system. This shows any abnomalities in the cardiovascular sytem such as diseases of the heart valves, any damage to heart tissue, and severity of any present coronary artery disease.

10. Right heart catheterization - to check for artery lung pressure. I described this procedure in my prior post.

Tests I still have to do:
1. Left heart catheterization with angiogram, scheduled for 6-14. Assesses any cardio damage or coronary blockages. I only need to have this done because I’m over 50. If the test shows any abnormalities in my heart, such as a small leak or hole, it will be fixed during transplant surgery. Barring any complications, this will be outpatient, but will require me to spend a full day at USC.

2. Complete and current gynecological exam - I was due for this anyway and have an appointment scheduled in July.

3. Mammogram - ditto for this, appointment scheduled in July.

4. Complete oral exam - I’ve been waiting for authorization for this appt to be checked at the USC Dentistry school.

Between all the physical tests and mental ping pong I played, this hospitization was exhausting. I’ve been out now 2 weeks, and I finally feel somewhat normal again. I’ve been reading transplant info whenever I can and making lists of ?? I have for the Tx team. I’m also going to attend a Tx support group at USC the first Tuesday of every month. I know several online groups too, which I plan to start participating in. And lastlly, I have other CF friends who have had a Tx or are on the waiting list. I will defintiely pick their brains too.

One more step of my journey, that I must embrace. I can only think positive thoughts that the Tx will work out great for me. I’m hoping for many more years of good life left, to spend with my family and friends.

Now if only I can finish wrapping my head around the whole idea and accept it wholeheartedly. But I know, I will, it takes time. :)