Wednesday, December 29, 2010

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!!  :)

Tuesday, August 24, 2010

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.

Sunday, August 15, 2010

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. : )

Tuesday, August 10, 2010

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.

Wednesday, July 21, 2010

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.

Friday, July 9, 2010

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. :)

Sunday, June 27, 2010

Busy, busy, busy!!

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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!!!

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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. :)

Wednesday, May 26, 2010

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

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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. :)

Monday, May 17, 2010

In Honor of Emily

I don't even know where to begin. 


My dear friend Emily Haager lost her battle with CF 

on Saturday May 1.




When I heard the news, I was stunned and overwhelmed to the point of curling up and hiding in my hospital room. This can't be true, no not Emily, I still can't believe it. It took me days to process what had happened. It was even more surreal because I was in the hospital, just 2 floors below her. I finally feel that I'm in a place to write about her and my feelings of her untimely passing.


Emily and I go back probably 8-9 years. We were both patients at CHOC and I met her when she transitioned over from peds @ 18. She began attending the Family Education Days, picnics, and the other events our clinic held. She was at first shy, but she soon opened up and we exchanged our CF stories, our common bond. We often saw each other at clinic and caught up with our lives. 


We were both invited to speak on an adult panel at CHOC clinic Education Day. We told our CF stories and answered questions from parents of CF kids. These events really gave us time to socialize and get to know each other better. After years of attending our Ed days, our clinic discontinued seeing the adults as patients and we were told to transfer to an official adult clinic. We both ended up at USC, and again, saw each other often. We laughed that we were on the same 'sick' schedule being admitted at the same time and having our follow up clinic check ups the same day.

 

Emily's story is one that not only is heartbreaking but also a wake up call to me how quickly CF can take an unexpected, ugly turn. She was extremely active, compliant, and always on the go between being a college student, working, involved with church, CF and just living and loving life. Emily was also the CF ambassador for Pipeline to a Cure, surfing, fundraising and raising CF awareness. Last summer her FEV1 was in the 70s and she was well. 

 

She contracted H1N1 in October and admitted to the ICU at the same time I was in for a tune up. We emailed back and forth, she was very sick, but eventually got better. By Christmas, she was very sick again and shortly after diagnosed with MAC, Absessus. She came to me, knowing I had MAC 10 years ago and beat it. She wanted to hear my experience and treatment for MAC. 

 

In late January we were both at clinic and she told me that she was being admitted for another exacerbation and to begin MAC IV treatment. Within a couple days, she had a severe reaction to Colymycin IV that shut her kidneys down. Dialysis began as her kidneys slowly healed, but the many weeks of hospitalization took it's toll and she ended up on a vent as her lungs began to fail. She had been making some baby step positive progress, but one thing after another happened and her body finally gave up after 3 months in the ICU.

 

Emily had an incredibly supportive and loving family who was by her side 24/7. Their unending faith gave them the strength and tenacity to be there and help her in any way they could.


I take deep comfort in knowing that Emily is in a much better place, breathing easy, free of suffering, and in the arms of the loving Lord. A wonderful place that someday I hope and pray, I meet her again. Rest well, sweet Emily.

Saturday, May 15, 2010

The Great, The Ugly and The Overwhelming in between . . . post 1 of 3


 Home sweet home!! :)

I was released from the hospital late Wednesday 5-12 and got home around 8:15pm. After 2 weeks, I was so ready to be home, in my own, bed, smells, comfort and familiarity. It felt so good to walk through the front door, having the grandkiddos screaming, "Grandee!!!!" fighting for my hugs . . . I so missed the little boogers. :)

To say this hospitalization was different from any other admit, would be an understatement. It started with me being very sick and being told you "will stay in the entire 2 weeks until the IV course is finished." I settled in and adjusted my thinking to that fact from the get go. I usually stay in about a week or so until I turn the corner, and then come home to finish my IVs. But with all the circumstances leading to this admit, Dr. R knew I needed the bed rest this time. I didn't argue or ask to go home early, I knew it too. Little did I know what this admit had in store for me. It encompasses 3 story lines, so I will post my stories in 3 separate posts.

On Friday April 30th, Dr. R felt it was a good time to address the lung transplant issue again as he had in clinic weeks earlier. With the continuing progression in my left lung causing my infections, he is worried that it will in turn start affecting my right lung. If that happens, my only reserve to breathe would be compromised, with no other options, transplant or die. He wants me to start the process, having the physical evaluation testing done while I'm in house to make it easier for everyone, especially me. Ok fine, let's do it.

Also, I came into this hospitalization with a new diagnosis of Pulmonary Hypertension. (PH) The echocardiagram ultrasound done the week before indicated problems, but I would need to have a right heart catheterization to confirm the PH diagnosis by measuring the artery pressure in my lungs. The Transplant evaluation also requires this test to be done. Dr. R thought it best to kill 2 birds with one stone, and move forward. The cath was scheduled for Friday the 7th @ 8am. The plan was to have the cath, determine the extent of the PH, and them meet with the PH Dr. who is also a pulmonologist on the transplant team. How convenient, one stop shopping. :) And, oh goody, a whole week to stress about the right heart cath test I've heard so many CFers talk about.

The cath procedure itself actually wasn't as bad as I had thought thanks to Versed. The stressful part was lying on the table, watching the staff set everything up in the OR, me naked from the waist down as several people buzzed around me. Uh yeah, check your modesty at the door, please. The Dr. walked in and asked how I was feeling. "Nervous," I said. "Not for long," he answered, "I need you to be fully awake to follow instructions yet comfortable, give her 1 Versed."

The nurse came over and pushed Versed into my port line. Hello, woozy head rush! Two minutes later, Dr. asked again how I felt. I said, "just a little woozy." I looked at the clock, it was 8:35. He told the nurse, "give her another." Shoot in my port, la la land, yet still hearing the music and conversations. I felt the sting and burning of the 4 or so lidocaine shots in my right groin, ouch. The Dr. said, you are going to feel pressure." Yeah, what ever, I don't care, just do it. Good drug, that Versed, I wasn't nervous anymore. :)

He jammed a guide line and tubing into my main groin vein and threaded it all the way up into my right heart followed by the contrast dye. I had an xray looking device hovering over my chest taking pictures on 3 screens beside me. The Dr. maneuvered, recited numbers to the nurse, had the tech take pictures from different angles, then told me to hold my breath, push down, like having a baby or bowel movement. They put O2 on me, and did the whole drill again. I heard the tech ask if it was time to go to the second level, and the Dr. said, "nope, I got it, we're done." (I gleaned from the OR convos that there were 3 levels to measure the artery pressures) The Dr. Snapped his gloves off, leaned over my face, and said, "everything looked great."

Really?, as I thought in my foggy brain trying to process what he had just said to me. Was I dreaming this or was this for real?? I laid there while the techs cleaned me up and put a nice, heated blanket on me. Ahhhhh, felt great, I was done and warm. I glanced up at the clock, 9am on the dot . . . that was quick!! As the techs wheeled me towards the door, the Dr. said again, "your pressures are in normal range and looked great for your age and considering you have CF." I didn't dream it, I'm more awake now, and I HEARD it, woo hoo, no PH!!!!!!! As we exited the room, Terry was at the door waiting for me to follow me to the recovery room. Two hours of laying flat on my back, which is really hard for me to do. My lungs got really junky and I coughed up crap the whole time. Finally, they wheeled me back to my room.

My hospital pulmonologists were waiting for me with smiles on their faces, and reiterated again, normal pressures and no PH!!!! YES!!!!! But, now you need to lay flat for 4 hours, no exceptions. Ugh, here I was thinking the 2 hours were hell, now they tell me 4 hours. Dr. R came into my room shortly after, and he said, "nope, I want you to lay flat for 6 hours." He said, "we really don't want you to get a blood clot in your lung after an invasive procedure." Hrrrrrrummmmfff. I couldn't wait to get out of the bed, coughing like crazy and feeling like I was laying in a puddle of OR goo and blood.

3pm rolled around and Terry helped me to my feet. I was unsteady and a little sore but determined to clean up and get dressed into my comfy garb. I felt a thousand times better, crawled back into bed and finally got to eat my lunch. Terry went home once he realized I was fine. I stayed in bed the rest of the day except to go to the bathroom, but overall felt OK. I was thrilled beyond belief that the echocardiagram was wrong and that I didn't have PH. I kept thinking that over and over, thanking God for taking that horrible problem away. Apparently the echocardiagram, is not a fool proof test, but rather an indication only that the cath needs to be done. I wish someone had told me that before I had already stressed so much about thinking I had PH. Oh well, it's all ancient history now. :)

I slept good for the first time that night. Relief that PH was not, the worst test was done and I could concentrate on getting better. Thank you God.

This was my GREAT news, which I wanted to write about first. I'll back up in my next post to Saturday May 1, to the horrible news, the shitty reality that is CF. It deserves a post by itself.

To be continued, in a couple days . . .

Thursday, April 29, 2010

Bad, bad blogger

Oh how I wish I had something fun and exciting to blog about. Unfortunately, I've been sick the majority of this year. Everyone keeps asking what's going on, so to keep from repeating myself to many, here is a synopsis of my 'interesting' couple of months. And if you want to to stop reading here, completely understand. It's all medical related, lol, you've been warned. :)

To be honest, it's been stressful and overwhelming for me since I got out of the hospital in beginning of March. Usually my writing helps relieve stress for me, but this time, I've been sidetracked learning about new health issues for me. A lot has happened which I hope to catch up on, here and now. Gosh, where do I begin . . . I have a feeling this will be a long one . . .

I last blogged about being in the hospital. Once again, it all began by me catching a cold from the kids in February. Even Terry got it this time, Jen was the only one to escape it this round. And of course, as I was in the middle of the cold, I had a clinic visit Wed March 3rd. Dr. R was not sure if I truly was just having virus issues or if it was leading to an CF exacerbation. It was hard to tell at this point, since it blurs together into one big sickness. But my FEV1 (lung function) was down to 45% from 48%. He put me on oral Zyvox, a powerful antibiotic that targets both my MRSA and Steno, hopefully to keep it from settling in my chest.

By the weekend, I was toast, very sick, a coughing couch potato and useless. I shot off an email to my CF nurse on Sunday evening. First thing, Monday morning, she called me to come in for a check up, packed and prepared for admit, just in case. In case? LOL, I knew better, I spent all day Sunday packing my bags, just knowing where I would end up. Long before my email ever went out. We cystics just know these things, Terry knew it too, that I had hit the wall. Our bodies tell the whole story of when to cry uncle.

My FEV1 had fallen to 41% in just a few days. The call was made to the hospital and off we went, across the street to check in. One of my nurses commented that, "I must hate when I have to go in." I told her, "no, that actually when I feel this bad, I just want to feel better and I know this is the only way I will." She said I had a refreshing attitude, unlike many of the younger cystics who fight tooth and nail going into the hospital.

I was put on Zyvox IV, and Minocycline oral. I took full advantage of staying in bed and resting while I could. I didn't seem to be bouncing back to feeling good right away this time. After 9 days, I felt good enough to go home and finish my IV course.

Went back to clinic on Mar 22 for a recheck before the IV was to finish on the 23rd. My FEV1 had only gone up one measley % point to 42%, not good news. Dr. R ordered another week of IVs plus added in oral Levaquin. And to step up any exercise I could tolerate, even trying to walk every day and boost my lung function up a few %. I promised I would.

By then though, Dr. R was suspecting that something else was brewing, he ordered some tests for the next week. Lung CT revealed a severe, progression in my left lung, which I knew because of how I felt. It is at end stage disease, where my right lung is still moderate despite pulling the lion share of my breathing.

So then he ordered a Echocardiagram, an ultrasound of the whole heart/lung area. The results were NOT what I wanted to hear. I was diagnosed with Pulmonary Hypertension (PH), abnormally high blood pressure in the arteries of the lungs. The PH is a secondary disease caused by CF. Because my left lung is almost non functioning, my right lung and heart are working overtime trying to keep up. My heart is enlarged, lung arteries constricted and working too hard trying to get oxygen in the blood. My doc referred me to a doc who specializes in PH, just last week. I have yet to see her.

Of course, as soon as I learned about my PH diagnosis, I googled like crazy trying to learn as much as I could. I wanted to be somewhat informed about what I was faced with before I see the doc. There was not a whole lot of info what part PH played with CF, so that I will learn from my docs. But I do know, that standard therapy for PH is oxygen, to take the stress off the heart. Oh boy.

In the meantime, this whole last week has been miserable, fighting bugs again and being extremely short of breath (SOB). I got to where I couldn't walk far without coughing, heaving, and trying to catch my breath. The stairs loomed as my worst enemy in my own house. By Tuesday 4-27, I emailed my nurse, I had hit the proverbial wall again. She emailed right back, but unfortunately, the hospital was full with not a bed in sight. Great. She told me to hang tight and wait for a call when a room becomes available. Finally, USC called Wed evening, and here I am, admitted again.

In light of my recent PH diagnosis, my clinic decided to admit me to start another round of IV antibiotics and do more tests for a better understanding of my PH. The PH doc is supposed to see me in house, hopefully soon. They also want me to have an invasive diagnostic Cardiac Catheterization where they put a catheter up the large vein in the groin, thread it into the right heart and shoot meds in to test lung pressure to determine severity of the PH. Ugh, not looking forward to that!

I have also been researching O2 options. There are many options and overwhelming at best, taking on another challenge unfamiliar to me. I'm actually not too bummed at the O2 idea, which surprises me. I fought getting an IV port for so long, as a sign of 'progression.' I soon realized that fighting for what I need is ridiculous, lol. My port has been one of the best decisions in my CF care. Honestly, I just want to feel better and breathe for a better quality of life. If that means I have to have O2, than so be it. :) I'm prepared to be released with O2, but if I don't, then fantastic. Better be mentally prepared than not. I guess I've finally learned to roll with the CF punches. Besides, the last thing I want to do is damage my heart, making me ineligible for transplant, or needing heart/lung transplant.

In a nutshell that's the deal, at least for you, the readers. For me it's been another long chapter in my journey. One that I hope calms down soon, and allows me some normal life for a bit.

Saturday, March 20, 2010

clinkity clank



it arrives like a storm.
it hit, again.
like a vengence.
gradually building strength,
hovering over me,
like a dark cloud.

robbing me of my energy,
sapping my drive,
me losing steam as it generates power.
eventually overcoming my ability to breathe,
to function,
to think clearly.

surrender
resigned to relinquish my freedom
so depressing
yet so liberating.
conceding means
feeling better.

off I go,
to clinkity clank
sterile white,
noisy, bland,
scheduled, boring
day after day.

Yes, I was in the hospital. Went in March 8th for 9 days. I'm home again on continuing IVs, which are throwing me for a loop this time. I'm extremely tired, nauseated, fuzzy headed, and not able to do much. I hope by the time I finish next week I feel better. But for now, I'm not quite myself, so I'll write later when I can think more clearly.

Cheers to better days ahead. :)

Sunday, February 14, 2010

Saying Goodbye with Grace

This has been a whirlwind of a year so far. I've got lots of things swirling through my head all competing for space, wanting to bust out in words. I've got tons to blog about, but the fingers can't seem to type what my mind feels and wants to say. It feels like my mind is firing thoughts a mile a minute, jumping from one thing to the next. I start to write and overwhelm consumes me. What the heck is wrong???? I've never been like this, never unable to write what I feel.

But I do know this, I owe a blog dedicated to a very special, vibrant, remarkable, loving woman named Eva Markvoort from Vancouver, Canada. I've never met Eva nor directly interacted with her. But in the CF world, you would have to live under a rock to not 'know' Eva. She has made herself a very public face of CF, with her LiveJournal blog and subsequent moving documentary film, showing her struggles with end stage CF and receiving her double lung transplant.

The cameras followed 23 yo Eva as she waited for her new lungs that would save her life. The lungs did come in Oct 07, she had the successful transplant surgery, and regained her glorious, flamboyant love of life.

She spent her new found health and time promoting her documentary, CF Awareness, and organ donation. All the while being surrounded by her unending support circle of family and friends. She became a very public figure in Canada, between her documentary '65_RedRoses' many newspaper and magazine articles, and TV news and talk show interviews. Eva became the face of CF and of organ donation.

Life was good for her again, until 9-09, when chronic rejection set in. Who knows why a body all of a sudden rejects a donated organ after welcoming and celebrating it's arrival 2 years earlier?

All of a sudden, at 25, Eva's gift of life turned against her, gradually losing function. Within months, her lung function plummeted to the 16% range of function, barely enough to sustain life. She was listed for a 2nd lung transplant and put on the waiting list. The waiting has come to an end, and the inevitable, unspoken end is near. Eva knows this, her doctors telling her she has just days left of her life. In typical Eva-fashion, she chose to share her courageous final goodbye's to the very public she drew close to her.

Her bravery and acceptance in the face of death is an inspiration. Her message of love and be loved touches everyone who watches this heartfelt video. Surrounded by her family and speaking from the heart, it is clearly evident that she is loved by so many people. She posted this on her blog Thursday, Feb. 11.




God speed and peace Eva as you travel your final journey. May God wrap you in his open loving arms, take your pain away, and welcome you into heaven. You will be truly missed.

Eva's Live Journal blog


Here is the trailer for her documentary made in Canada. It has not been shown in the US yet.
65_Redroses Trailer

Monday, January 25, 2010

Out with the old and in with the new


Time to post a short one, if nothing else to rid my blog of the last negative entry about 2009 . . . LOL.

The year has started busy as usual. Packed up all the Christmas schtuff, and cleaned the house like crazy. I can't wait to return my house back to normal after the holidays, even though it looks bare.

Jen celebrated her 30th BD on Jan. 19th, yikes!! It just seems like yesterday I turned 30. I can't believe I have a 'child' who turned the corner into her 3rd decade. Other than feeling old, Jen is actually doing very well. She is finally letting go of her marriage, accepting that fact that her and Brent are over. She's looking forward to her 30s as a new chance to start fresh.

She has been attending a divorce care support group at church, it has been a tremendous help. Her friends are a great support to her, helping her to move forward. Plus she started a new job as a dental asst. which she really likes. I still watch the kiddos while she works which keeps me and Terry both hopping.

I had a clinic visit on Wed 1-20. Not too bad, but could be better. My FEV1 numbers are down a little bit to 47%. The numbers drive me crazy, because I feel pretty good. When the numbers don't reflect how I feel, it's frustrating because I expect them to be higher. Dr. R assures me to not focus on numbers so much, rather how I feel. I agree, but still . . . The good news, if you want to call it that, about my numbers being down, is my FEV dipped down to 1 liter. : ( That number officially qualifies me for a handicapped placard for parking in a handicap stall. There have been a few times when I don't feel well or on IVs, that walking distances is a chore and makes me SOB. I will use it for those times I'm under the weather. Dr. R gave me the necessary paperwork and I'll take it to the DMV this week. UGH, hate going to the DMV.

So, I'm up to speed, I'm going to try to be a good blogger and keep this more up to date. For now, I took a cue from Jen and rearranged my attitude, to start 2010 anew as well.

Friday, January 1, 2010

Good F*ing Riddance 2009

*to the tune of It's My Party by Lesley Gore*


"It's my blog, and I'll rant if I want to,
rant if I want to, rant if I want to . . .
you would cry too, if my 2009 happened to you!"



Yep, this is a bitch session for which I think I'm entitled. I usually try to stay upbeat, but my outlet is my blog. I'd rather spill it here than to take it out on someone. Plus, I'm not one to hide my feelings, I am transparent. I speak my mind, I don't sugar coat or ignore how or what I feel and I try to be honest. Hopefully this blog, will wrap up my 2009 bad attitude and I promise to follow up with a positive blog in the next week. Because after all, through all the hard times, comes lessons learned and positive outcomes. For now, here's the nasty, raw deal that was 2009.

2009 has been one of the most stressful years of my life. I feel like the year as a whole chopped 5 years off my life, both physically and mentally. I blogged about just some of what the year brought us back in March, here. I could see then that the year was setting up to yield a doozy. Little did I know that the bad news year was not done with me yet. It still had a few more surprises for me to chew on, spit out and chalk up to the stinkin' list.

~~ 2 more hospitalizations on IV antibiotics, one in August and another in October, just 8 weeks apart. Both started as a cold/virus I caught from the grandkids, went directly to my lungs and the rest is par for the course. I was very sick in August, I should have stayed the whole 2 weeks in house instead of coming home to finish the IVs the last week. I don't feel like I fully recovered from the first bout before the second one began. The year tallied up with 3 hospitalizations total.

~~ We sold the cabin in October. I was not prepared for the bittersweet heartache it caused both Terry and I letting it go. It represented the embracing, embodiment of us . . . our peace, quiet and respite from real life. Snatched away from us, certainly not by choice. Not to mention, the $$ ass whipping we took on it, selling out at rock bottom. :(

~~ Work for Terry continued to be non existent until late in the year. Some dribbled in, couple days here and there. But we managed to survive on a fraction of a normal year in addition to taking in 3 more people. How did we do it? I still wonder. But after being a single Mom myself for many years, I retreated into the all too familiar 'ultimate frugal mode', buying only the absolute necessities.

~~ Extreme drama on the home front. I haven't blogged about this family problem previously but I think by now, everyone I know has heard the story. In a nutshell, Brent up and left Jen and the kids last Feb. Said he didn't want to be a husband and father anymore, spun out of control with other women, drinking and used bi-polar as his 'excuse' for bad behaviors. Hmmm, don't think so. Jen, a stay at home Mom, had no job and no place to go, so she and the kids moved in here. Almost a year later, they are still here.

The drama coming from him, his family, and him not taking responsibility for the kids is unbelievable. Brent wanted his 'freedom' and filed for divorce June 1. He is a deadbeat living with his parents for free, not working since last March and living off the fat of the land. His naive, loser parents support him at all cost and let him loaf. The court awarded Jen a temporary child support order for a whopping $57 a month from Brent!!!! That doesn't even pay for diapers. BLECH!

Meanwhile, Jen is doing everything she can by getting 3 jobs and going back to school. This means I'm watching the kids while she tries to get her life back on track so she can support them. I'm struggling physically trying to babysit kids, having them live here and trying to stay healthy. I can no longer protect my health and stay away from the kid's colds. My life has been non stop, not getting the rest I need to regroup. The whole situation has taken a deep toll on me, healthwise. My PFT numbers reflect the toll beginning last Feb.

I could certainly write a book about all the sh*t we've had to deal with on this chapter. The continued sheer pain and grief he has caused Jen and the kids is unfathomable and inexcusable. To say I'm bitter towards Brent and his family, is an understatement. There are no words harsh enough I can use to fling their direction. And believe me, I have given them a HUGE piece of my mind, I don't mince words at all. Not many people have had the pleasure of seeing my 'passionate Mama Mia' Italian persona erupt and spew, but they sure have. Thanks Dad, for that genetic gift? ; )

~~ Lastly, nothing is as devastating as a death. As I have said in previous posts, our CF community suffered a overwhelmingly sad year, losing too many young lives. I have known a total of 6 online and real life friends pass away in 2009.

The last was most definitely the one online friend that meant the most to me. Dear, sweet Melissa who passed away in early December. I haven't even been able to blog about her because I was weary of death, in denial, unbelieving that this could happen to her. Not her, not now, no way. In my mind she wasn't that sick, just going in for another routine round of IVs and tune up just before Thanksgiving. She started having complications, not being able to breathe in the hospital. She made the decision to stop all treatment, to fade away and let her die. She was done. She still had so much to live for, to keep her going. It just didn't make sense.

She lived in a small town in New York, was 41, married and had a 12 y/o daughter. She was the heart and soul of the cf.com support forums. One of it's first members, she was the unofficial greeter to all those who joined. She became a friend to everyone and spent hours a day responding to posts, blogs, and threads. She chatted in the evenings to anyone who would talk and got along with everyone. I loved her sense of humor, her honesty when warranted, her supportive nature and her empathy towards our fellow CFers. She was truly a gem and will be sorely missed in our online family. The silence left behind by Mel's absence is deafening.
RIP Melissa, I think of you often friend.

I believe that is enough, I'm emotionally drained and I'm done.
See ya 2009, I'm not looking back.
You are history.
*Rant over.*

Tune in for a more positive 2010 blog.
2010 HAS GOT TO BE a better year.
Nowhere to go, but up.



See, with all that out of my system, I can now smile again. : )