Friday, December 21, 2012
Thursday, December 20, 2012
Wednesday, December 19, 2012
Tuesday, December 18, 2012
It has been fun in recent years to go back and watch Christmas morning after Christmas morning as we moved through our childhood. It's hilarious to see how much we've changed...and how much we've stayed the same. We were lucky that as children, we had parents who were always able to make that day pretty magical.
Monday, December 17, 2012
Sunday, December 16, 2012
Saturday, December 15, 2012
Friday, December 14, 2012
Thursday, December 13, 2012
The final night, Christmas Eve, we'd deliver a Christmas wreath and sing a couple carols and reveal ourselves as the sneaks. There was always a lot of laughter as we discussed near catches and strategy.
Wednesday, December 12, 2012
Tuesday, December 11, 2012
Monday, December 10, 2012
A few days before Christmas, after Provo had emptied of my friends and family, I received a call from a tire shop in town. The man on the phone told me that tires for my car had been purchased, and that he needed to schedule an install appointment. An anonymous donor had made arrangements for me to get the tires I needed and with enough time to drive to Denver to make it home in time for the holidays. It was incredibly humbling. The shop owner refused to reveal the name of my Santa Claus, and all I could do was sit in the waiting room and write a Thank You note and hope it was sincere enough.
The past two years have been tight, but I have been blessed again to have enough to take care of the necessities. I look forward to being well soon and paying things forward.
Sunday, December 9, 2012
Saturday, December 8, 2012
I know that Arizona and Florida still celebrate the holiday, and talk about reindeer and snowmen...but it just can't be the same when you do it in shorts and flip flops. I like the white stuff.
Friday, December 7, 2012
Thinking of him led me to a Christmas memory that may have been the conclusion of the Denneys going anywhere for Christmas. The station wagon was packed tight with hidden gifts for the road trip to Vegas, and the Colorado weather was typical for winter. I remember cold and dark. The rest of this gets a little foggy...we either drove to Vegas on Christmas Eve???...or home to Denver on Christmas Day??? I don't know, it was 30 years ago!!! And speaking of 30 years ago, the holidays meant that stores were closed on those days so that everyone could spend time with family. Well, all stores except 7-11. Which is where Christmas Eve/Day? dinner came from. I guess my foodie side can be credited for the vivid memory of eating soggy gas station, pre-packaged sandwich for Christmas. It was disgusting...but 30 years later, kind of funny.
Thursday, December 6, 2012
Wednesday, December 5, 2012
There is one year that really sticks out to me. It was a Saturday morning at the Stake Center, I don't think my youngest brother had been born yet. I remember a really convincing Santa and Mrs. Claus and purchasing terribly cheap presents for my family in "Santa's Shop". I also remember going home with a stocking full of unshelled peanuts. I think my siblings and I were all wearing 80's style sweat suits...weird that I remember (or think I remember) all of this.
Tuesday, December 4, 2012
Today was nothing like those former birthdays. It was a whirlwind of activity and friends and I can't believe how fast it flew. I'd love to return to my old tradition soon, but today was a great day of celebration. My 30-something birthday's have had a "blech" feel to them (my own bad attitude), and I used to mourn all of my missed opportunities and failed efforts. But this year is different. This year I feel lucky to be alive. I feel fortunate to be in a situation where I can hope for a better future. I am anxious to have many more birthdays...so it was fun to celebrate and be celebrated!
Monday, December 3, 2012
Sunday, December 2, 2012
Saturday, December 1, 2012
Friday, November 30, 2012
Thursday, November 29, 2012
Wednesday, November 28, 2012
Tuesday, November 27, 2012
Monday, November 26, 2012
Sunday, November 25, 2012
Saturday, November 24, 2012
Friday, November 23, 2012
I am also grateful for my own imagination. Man does that keep me entertained! For hours!!
Thursday, November 22, 2012
Wednesday, November 21, 2012
My brother Brett and I might be the only ones brave enough to eat it tomorrow, but I don't mind leftovers...I'll eat it for breakfast, lunch, and dinner!
(Besides, how cool is it that I have a great grandma named Effie?!)
Tuesday, November 20, 2012
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He was sent home today with recovery instructions, but he's in surprisingly good condition, considering the circumstances, and I think we are all feel very lucky.
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Monday, November 19, 2012
Everything is calm now, but my dad was in a fr-reaky accident this afternoon and is now recovering in the hospital overnight. After a mysterious crash, 30 minutes into a bike ride, he spent the next 2 hours weaving his bloody way home. None of this information came from him, it came from a mapping app he uses during his rides. After the last update from my mom, he still had no recollection of his afternoon or the passcode to the garage.
After speaking with my mom shortly after he arrived home, and hearing first hand how absent he suddenly was, I was pretty ticked at God and the universe for giving my family one more stupid hurdle. Seriously, can a girl and her dad just get a break?! But it didn't take too long before I recognized how lucky we were that he made it home at all. And the CT scan came back clean and clear from any bleeds or tumors, new or old, so that's a miracle too. And I'm feeling plenty wound up, but somewhat relieved that while he may never remember the accident, he should recover fairly well.
Sunday, November 18, 2012
There is a guy down the hall that is doing his very best work to cough up all of his internal organs and gagging on them the whole way. And the lady right next door just LOVES her call button and is giving the CNA a run for her money this morning.
I would probably earn a criminal charge on my first day, but the nurses just keep coming back for more. I feel grateful that there are individuals, who are much better people than myself, who are willing to do this hard work!
Friday, November 16, 2012
It's an odd scenario for me to be calling anything normal. Hospital room, Friday night, three single friends drop by to help me kill some time. And we talked and laughed like everything was so normal.
Here's to hoping the normal moments keep coming!
Thursday, November 15, 2012
But when every stitch is washed, folded, and put away...down to the linens and bathroom floor mats....yeah, those are some of my most favorite moments in life!
When I was in student housing, it wasn't unusual to have to do wash at a laundry mat and it was such a pain. Now I have what I need right in the house and I think that is a blessing worth celebrating!
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Wednesday, November 14, 2012
I try to fool myself into believing that I have low expectations and consequently, I'm rarely disappointed but (shhh...this is a secret), I really do hope for the best. Pretty much all the time. I like it that way.
Tuesday, November 13, 2012
It's cold in Utah and I've responded with flannel pajama pants, a hoody with the hood in use, an electric blanket, my favorite old quilt, and my favorite new quilt (lazy, point-of-view picture above (THANKS MOM!💗)).
I remember making 20 quilts for "Access Housing" as a service project when I was in High School. I imagined what it might be like for someone in poverty to be cold...I don't think I really understood. And so far in my life, I've never really known the bitterness of enduring cold, I most likely will never have to.
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Monday, November 12, 2012
Sunday, November 11, 2012
Saturday, November 10, 2012
Friday, November 9, 2012
I feel lucky that I feel comfortable doing just about anything on my own, for me it helps minimize the number of times I feel like a victim of loneliness.
Thursday, November 8, 2012
That is a picture of my 5 year old nephew hocking Gatorade to High School students at $8.00/bottle. He needed to earn $8.00 to buy some toys he wanted, and he figured inflated prices would mean he only had to sell 1 bottle. He's a genius..right?! (I think he had to negotiate down to move product, but I'm looking forward to writing his biography some day and sharing this story.)
Stories from friends and family about their kids are some of my favorites to hear and repeat. Nothing is funnier or more inspiring than life from their perspective.
Wednesday, November 7, 2012
When I saw my first cardiologist, 24 years ago, my condition was not named or even known. Since then, not only has non-compaction been identified, but hundreds of treatments and medications have been developed to assist heart failure patients. The greatest miracle is the advancement of human heart transplant. Something that wasn't really an option for me not long ago is now the thing that gives me hope...and maybe even a shot at SCUBA someday soon!!
Tuesday, November 6, 2012
I am so glad that I have been blessed with empathy. At times when I don't get my way, or I am wrong, I am usually able to eventually see another side, and find peace and hope.
Monday, November 5, 2012
Sunday, November 4, 2012
Saturday, November 3, 2012
Friday, November 2, 2012
Thursday, November 1, 2012
My current funk isn't so ugly, but it is a funk, and I'm ready to shake it.
Wednesday, October 10, 2012
Wednesday, September 26, 2012
Monday, September 17, 2012
Saturday, September 15, 2012
Friday, September 14, 2012
Thursday, September 13, 2012
Sunday, August 19, 2012
I have spent a lot of my thoughts with my future donor. I have offered many prayers in their behalf. Somewhere out there, in a 1,000 mile radius around Salt Lake City, some generous person is living the last days of their life. That person has no idea that time is short. My hope is that they have plenty of opportunity to say "I love you", I pray that there is little unfinished business, I need their loved ones to feel peace.
I feel a responsibility to live a life worthy of such a generous gift and I intend to bring honor to my donor and everyone they have loved.
Tuesday, July 31, 2012
I have followed every bit of counsel I have been given regarding application to additional programs, but a dying girl with mountains of integrity still struggles to get approval for government assistance. I have an attorney who is confident in my case, but I have been told that best case scenario will be a 4 month wait for answers...and 4 months are way past September 1.
The past week has been a chance for me to resurrect the tough professional and play advocate for myself, but it's exhausting! Between naps, I'm adopting an "abundance" perspective and looking forward to pieces falling in place over the next few weeks. Things will totally fall into place...right?
Sunday, July 15, 2012
Monday, June 18, 2012
Thursday, June 7, 2012
Friday, June 1, 2012
Thursday, May 24, 2012
I keep waiting for the happy ending so that I can write an entertaining note about how crazy the ride has been but how great it ended...we're not there yet.
I did have my second Cardiac Ablation on April 27, 2012 and I've managed to stay in normal rhythm more than I have been out of it. That allowed me to have the big procedures this morning which were originally scheduled for March. The intent of these tests were to determine if I qualified for transplant.
My parents came to town and we hit the hospital early this morning. I'll be honest, it was a rough day and required more bravery than I thought I had in me. In addition to the complications and chaos of the procedures, it turns out that although the tests were informative, they were inconclusive due to severe water retention common with Heart Failure patients. So...the short-term plan is to aggressively address the water retention over the weekend and return to the hospital Tuesday. At that point we will re-run the procedure and possibly admit me for a couple of days for additional testing and observation.
Although I don't have any definitive information, I do have a 7 day plan...and that's the best news I've had since February!
Wednesday, May 9, 2012
When I first became friends with Nalene, we connected immediately. She was everything I liked about myself and I immediately identified her as “my kind of girl”. Over the past few days, I’ve listened to many share stories which echo that same sentiment. It is clear that my bond with Nalene is not unique...it is the bond that Nalene has with all of those whom she loves.
Like I mentioned, I felt like I had so much in common with Nalene when I first met her. However, during this past year, as I have battled terminal illness, I have allowed some of those qualities to fade. Uncomfortable with my circumstances and my emotions, I have become more closed off than I ever have before. But with impeccable timing, Nalene was consistently supportive and unquestionably cheering.
I was incredibly fortunate to have some time to visit in my home with Nalene the night of May 3rd. I had only been home from my last hospital stay for a few days when she sent a text asking if I was up for visitors. In the “midst of ick” (Nalene’s words), I had ignored texts and emails and phone calls from others asking the same, but that afternoon I saw her text and responded. Somehow I knew I wouldn't want to pass up this opportunity to talk and visit with Nalene.
Nalene and Jana Evans stayed for a couple of hours and we chatted and laughed like friends do. There was nothing so profound in our conversation, but a profound mark was left on me. As I had the blessing that evening, to look into Nalene’s Mirror, I was reminded, and lovingly encouraged, to be “my kind of girl” again.
I have found it difficult to articulate my thoughts and feelings from the past few days.
A verse from the New Testament has stayed with me, Matthew 25:40, “And the King shall answer and say unto them, Verily I say unto you, Inasmuch as ye have done it unto one of the least of these my brethren, ye have done it unto me.” I am humbled that as she lived her life in testimony of the Savior, she thought to share that testimony with me. I am honored to step up to the challenge to live as Nalene lived, and feel lucky to have the imprint of her example so firmly stamped on my heart.
Wednesday, April 25, 2012
Last Monday I thought I was so clever to write a note and refer to an old adage...now I just think it was kinda lame. Specifically because it turns out that neither taxes, nor death, seem to be my biggest concern.
The short of it is that I'm back in A-Fib and scheduled for my second Cardiac Ablation this Friday the 27th. Because of this, I had to postpone tests with the transplant team until late May.
The long of it is as follows:
Following my visit to the hospital on Monday, the 16th (the last time I posted a note update), I came home and struggled to regain any energy. While my rhythm had returned to normal, the symptoms continued to bother me. Sure enough, on Friday evening, my heart flipped back into A-Fib. I called the hospital and was counseled to wait through the night and if there was no change, to take myself to the hospital the next morning. I woke up early and traveled an hour south to the Provo ER hoping that might increase my chances of seeing my actual doc, even on a Saturday.
The ER staff was clearly freaked out by my case, but treated me well, as they replenished my potassium and prepped me for another Cardioversion. Dr. Hwang happened to be in the middle of a procedure in that hospital and, after being notified that I was there, asked that I just be kept for observation so that he could determine then administer treatment.
Dr. Hwang soon arrived, and the Cardioversion was successful after one attempt! My breathing was immediately improved, but my vitals were not rebounding as quickly as they would have liked and I was admitted for bed-rest and overnight observation.
My "frequent flyer" miles on the Cardiology floor won me a corner suite and I really do get the royalty treatment from the staff! (Although, I'd rather be nobody at home, than royalty in the hospital.) After an uneventful night, and 24 hours in a hospital bed, I was thrilled to be discharged and back in my own bed by 10:00 a.m. Sunday morning.
All of that relief disappeared in an instant when at 6:30 p.m., Sunday evening, just 34 hours after the last Cardioversion, I WAS BACK IN A-FIB!!!!!!!!!!
Since Sunday evening I've had changes to my medications, and a cardiac MRI, and Dr. Hwang has scheduled my second Cardiac Ablation for this Friday evening. I remember that I didn't love recovery from the procedure back in September, but the specifics are hazy against today's discomfort. It's funny what we're sometimes willing to "forget" for a little relief.
Through all of this chaos, my greatest disappointment is that the Heart Failure clinic has determined that the testing and transplant list placement must be put on hold...again. And I'm suspicious that this won't be the last time that I have to adjust my expectations and timelines. In my clinic visit today I was told no less than a dozen times that my case is really complicated...like really, really complicated. I don't have a medical degree, but I think that translates to "nobody is sure what is going on".
The only thing that I am sure of is that for nearly every person who has a transplanted heart, there is a story of delay and discouragement before the happy ending. I guess I am in that part of my story.
Tuesday, April 17, 2012
Friday, March 30, 2012
Saturday, March 24, 2012
Friday, March 9, 2012
Thursday, March 8, 2012
Wednesday, March 7, 2012
Tuesday, March 6, 2012
Monday, March 5, 2012
Sunday, March 4, 2012
And Alma and his people did not raise their voices to the Lord their God, but did pour out their hearts to him; and he did know the thoughts of their hearts.
And it came to pass that the voice of the Lord came to them in their afflictions, saying: Lift up your heads and be of good comfort, for I know of the covenant which ye have made unto me; and I will covenant with my people and deliver them out of bondage.
And I will also ease the burdens which are put upon your shoulders that even you cannot feel them upon your backs, even while you are in bondage; and this will I do that ye may stand as witnesses for me hereafter and that ye may know of a surety that I the Lord God do visit my people in their afflictions.
Saturday, March 3, 2012
Friday, March 2, 2012
Thursday, March 1, 2012
Wednesday, February 29, 2012
Tuesday, February 28, 2012
Monday, February 27, 2012
Sunday, February 26, 2012
Saturday, February 25, 2012
As my parents drove me to the hospital Tuesday, February 21, my greatest fear was being told that I would need a heart transplant. After hours of testing and waiting, everything changed when I was told that I needed a new heart, but was too sick to receive one.
My mind is a great big fog. And that feels like a gift. I keep thinking that "when my head clears, I'll sit down and send an email or post a blog or make phone calls", but I'm not sure my head will clear anytime soon. Many of you have given me your love and support and although somewhat impersonal, this seems the best way to update.
I had been told last Thursday that my tests indicated that I might need a heart transplant. Although I have seen a cardiologist since my early teens, I never thought that a transplant would be in my future. I was shocked and afraid, but suspected that this could be a false diagnosis like so many I have received over the past year. A Right Heart Cath was scheduled for this past Tuesday to confirm the situation, and I began praying that they would find a functional heart.
I received great counsel Sunday afternoon and although the words spoken were not what I had hoped to hear, I left the meeting with a sense of peace. While speaking with my parents late Sunday night, they decided to drive from Denver on Monday to be with me on Tuesday. I am grateful for many reasons that they were with me that day.
I was conscious for the procedure, and could sense that there was some uncertainty regarding the results they were seeing. I kept reflecting back on the words from Sunday's counsel, suggesting that no mysteries would be left undiscovered, and I offered up a prayer that the technicians would have sufficient discernment to move through the procedure. Although a bit chaotic, we were able to complete a thorough test. The technicians and nurses were all very vague regarding the results, so my parents and I used it as an opportunity to stay optimistic and hope for good news. Consequently, we were floored when they informed me that I did need a heart transplant, but that I was currently too sick to receive one. In just a few hours, our prayers had changed from wanting to avoid a transplant to now hoping that I would soon be well enough to qualify for one.
I was born with a birth defect only recently understood as Non-Compaction of the left and right ventricles. Over the course of my life, my heart has become so diseased that it has caused high pressures in my lungs (Secondary Pulmonary Hypertension). If I were to receive a new heart in my current condition, my lungs would quickly blow out the new organ, so I cannot be listed until those pressures are controlled. I am receiving pulmonary drug therapy at home for the next month, and the doctors seem hopeful that if it can be reversed, we will know soon.
As I first mentioned, I am definitely in shock, but feel that the shock is a blessing in itself. I also feel a great deal of peace as I reflect on words spoken to me, and impressions I have felt, these past few days. There is little to be done now beyond waiting and praying, and I feel blessed to have the support of so many friends, family, and even strangers. I will do my best to maintain updates and welcome calls and emails from all of you.
Wednesday, February 1, 2012
Tuesday, January 31, 2012
Monday, January 30, 2012
Sunday, January 29, 2012
"Adam fell that men might be; and men are, that they might have joy."