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- At the Docs now waiting from some good test results... 2010-10-26
- @DaynuhDoo Jujube, yummy! in reply to DaynuhDoo 2010-10-21
- @kevinsmith08 I bet a bottle of cab would even sound more enticing! 2010-10-01
- More updates...
Yearly Archives: 2007
Successful Surgery
Hi Everyone,
Before Amber went into surgery yesterday, she asked that I write an update as soon as we got word from the surgeon that the surgery was done with and successful, but true to my nature…I forgot. I’m sure you have all been checking and eager to know how it went, so I apologize for [...]
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Finally, Another Update
I am writing this update from the car headed to Wilmington for a spontaneous overnight for the mid-week holiday with Leah and Rod. The North Carolina beaches have been calling our names for weeks now; finally the three of us have off for a few days to relax on the hot sand under the beaming [...]
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Back To Boston
It’s been a long seven months, five of them here in North Carolina, but finally Amber is healthy and happy. She still has some obstacles to overcome and her health will always be an issue, but she now has new lungs that work perfectly so that she can live, and have a good foundation on [...]
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Nine Weeks Out
Once again a glowing report from the doctors last week. My PFT’s are up still increasing each visit. I am back down to only one IV medicine a day and decreasing the amount of pills first perscribed. My appetite is growing, still trying to reach that 100lb mark. Even all the milkshakes and the fast [...]
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Bright and Sunny Days
Alright ya’ll here is a new update. I went to have my monometry and pH study yesterday to see if I needed the fundoplasty (stomach wrap) that they often perform on lung transplant patients to prevent aspiration in to the newly transplanted organs and cause rejection. The nurse was unsuccessful to place the tiny tube [...]
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Full Of Life
I am finally getting a chance to write my first post-transplant (tx) update. It has been almost six weeks since my surgery and I am doing excellent! I have clinic once a week, and pulmonary rehab the other four days. Clinic consists of blood draws, PFTs, blood gas, vitals, and an x-ray. After all that [...]
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Amber Is Doing Great!
Hi Everyone!
After 70 days in the hospital, 21 of them post-transplant, Amber was finally discharged last Sturday. Sorry for the gap in updates, but things were hectic with medication and equipment deliveries, new schedueling, and sheer fatigue. She was in a week longer than normal because her right lung would not stay inflated off of [...]
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Guess What?
Amber was discharged from the hospital this morning and is on her way home right this minute! The news was an instantaneous relief of pressure and stress for us and although we still have a ways to go, and hurdles to jump, this is a huge step for Amber.
I will write more later, but [...]
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Slow And Steady Wins The Race
It’s March 1st, the sixty-eighth consecutive day that Amber has been in Duke Hospital. She is starting to feel the effects of long term hospitalization: anxiety, claustrophobia, and intense frustration. She is trying to stay positive but her emotions can sometimes get the best of her. Physically however, she is doing extremely well, considering that [...]
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Susie’s Logging Off
Here we are, sitting again in Amber’s hospital room, the 9th room she’s occupied at Duke Medical Center. We’re entertaining ourselves tonight by watching the Oscars- (Ellen’s funny) and passing time until Amber can go home. We know it’s going to be soon. And it won’t be soon enough as today is the 63rd day [...]
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A Couple Of Rough Days
Hi everyone. Amber has had a rough time these past days. She has not been feeling well because of an upset stomach, low energy, and being sore from the surgery. Due to high medication levels coupled with a lack of sleep and many days counting of being in a hospital environment, she has been experiencing [...]
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No One Can Know
It’s been 11 days since the installation of Amber’s new breathing apparatus! Breathing is no longer a difficulty, but her body and psyche are still getting acquainted with this new set-up and is still healing from the trauma of such an invasive surgery. All the medical signs look good and each day another tube, line [...]
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The Latest News
It’s been a couple of days without an update as things have been busy and a bit difficult. Laurie and Fred have been spending each moment at the hospital with Amber, Laurie sleeping overnight in Amber’s room on a chair. Leah is sick and not able to come into the hospital, and I am still [...]
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Leah’s Birthday– What A Gift
Hi everyone- I am sitting in Amber’s hospital room reading aloud the well wishes that hsve poured into the website since her surgery. The love and strength from all of you is so calming to her that she closes her eyes and rests while I read. She is so in need of rest. Laurie spent [...]
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Susie Checking In
Hi all, I’ve been a bit out of touch these past few days (not by choice) and will continue to be on the periphery of the developments at Duke. I am on my way out of town for a week and it is indeed strange that I can be writing an update from the airport, [...]
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Day 4
Hello to all!
Life can sometimes feels like an uphill battle for all of us. Right now for Amber, the battle feels like Everest, and she’s climbing it in a hospital gown, without food or water, carrying an IV tree, with six chest tubes in her side, on no sleep. Today is day 4 and [...]
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Day 3
Today Amber continues to make progress. She was able to walk 800′ without rest, on room air. She says it’s a relief to “be on the other side” of the surgery and that this time around it’s a lot easier than the first time. The reasons for this are that she is much more aware [...]
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More Progress
Hi everyone- It’s Mackenzie. I arrived at Duke yesterday morning just as Amber was waking up from her 6 hour surgery. I knew the protocol here was very differnet than at MGH, but still expected to enter a very tense and fragile environment. Boy was I wrong. Although Amber still has a long road of [...]
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Unbelievable!
It’s truly amazing! Amber is fully awake, extubated, and breathing on her own! She is talking and is also very surprised at her rapid progress. They may get her up tonight and into a chair. She is having some pain, but that’s not a surprise.
We were told that the recovery process here will be [...]
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She Opened Her Eyes
Amber is in ICU now and has even shown some signs of waking up. She opened up her eyes and responded to some questions with a nod of the head. Laurie told her that the surgery went well and that she is such a brave woman. She shook her head knowlingly. Laurie told her [...]
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In Recovery
Amber just came out of surgery and is in recovery. She will be in ICU in a few hours. The doctor said she didn’t bleed as much as they expected, which is good. There isn’t much more to tell at this point, but I will pass on the information as it comes. Amber, we love [...]
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Retransplantation Underway!
Thank you God, thank you Goddess, thank you Universe, thank you dear departed spirit for your gift, thank you dear grieving family and loved ones- we are thinking of you. Thank you Duke Medical Center. Thank you dear family and friends, our familial circle, and extended well wishers and thoughtful people. Our angel Amber just [...]
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Still Waiting…
…and we’re still waiting. Haven’t heard anything from the doctors yet but we expect to at any time. As soon as we get word we will let everyone know. Thanks for sticking with us!
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Rumor Has It…
…that my new lungs are here! I got a call this afternoon from the transplant coordinator that there “may be potential lungs.” At this point it is still a rumor. I am waiting to see the doctor/surgeon for the official word. I have however begun the work-up, blood tests, x-ray, ekg, etc. We sould know [...]
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She Got The Call!
Just got a text message that she got the call, im sure Susie will update this recent news to all with more details, but just wanted to let everyone else know of the good news……..
Good Luck Amber, Waltham will be praying for you,
Kevin and Dutchie
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Monday Monday
Yesterday Amber soared back up to her baseline and even a bit better. She went from mostly sleeping for 3 days, being in pain and not having enough breath to even talk (it’s not a pretty sight), to having a Sunday outing in the car and eating in a resturant! When she got back to [...]
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Not Yet
Amber has had a couple of tough days, being short of breath and having back pain, caused from a medication that boosts her white blood cell count. Earlier in the week she was feeling good enough to leave the hospital to go home to the apartment for a few hours where we enjoyed a Laurie’s [...]
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Hang Time
This weekend brought us sunshine and loved ones from Boston, but no new lungs. Quality time with family and friends, cards and gifts and excellent take out food helps to pass the time, but it remains a strain to be waiting, waiting, waiting. Amber had a couple of tough days with being short of breath [...]
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Still Waiting…
We’re here, still, in room 7816. Although it IS the most spacious room on the floor and feels pretty darned homey, it is still the hospital. Each day we think of new time-burning strategies. I’ll share a few with you, so you can imagine being here in Amber’s hospital room with us.
The first and [...]
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Anything But Routine
Of the past 30 days, Amber has been a resident of the Duke University Medical Center for 22 days, and counting. She will be here until she gets her transplant. Hospital life is a normal routine for her, at this point, and feels almost like home, or at least familiar. She is back in the [...]
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Amber
Life is a journey. Here we are at Duke University Hospital waiting for a suitable transplant donor for Amber. She has a great team of doctors and therapist working hard to get the best match for her. Today we received the good news that the pool of possible donors has been expanded based on something [...]
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Hi Ya’ll
Hello friends!! I’ve been pretty busy lately, so I haven’t written on this forum yet. We’ve had the good fortune of my sister Susie being here and keeping you all abreast of the journey we’ve been on. She will be back here in N.C. next Sunday, but until then hopefully I can fill in.
Amber was [...]
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Amber’s Back At Home