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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...
Author Archives: Susie
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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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 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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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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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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Finally Listed
Late last evening Amber was “listed” with UNOS, United Network of Organ Sharing. The staff here at Duke worked past normal hours to get all the paperwork and test results processed so that she could be listed before the Holidays. This means that she can be called for a transplant, at any time day or [...]
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Time For Time
No time is being wasted getting Amber ready for transplantation. She had more testing done today, consisting of a pleasant barium beverage for breakfast and your yearly women’s exam, topped off by an hour of physical therapy (with several “rest breaks”) and more needle sticks to the artery. Sound like a day’s worth of fun? [...]
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Great News!
WORD IS OUT; we got the wonderful news today from the Duke lung transplant team that Amber has been accepted for retransplantation! The transplant coordinator let us know that they were very impressed with Amber and her committment to move here for a year to be near her doctors and for her follow up care. [...]
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Over The Weekend
The past 2 days have been quite stressful. On Saturday Amber had to be taken to Duke Medical Center’s emergency room. She was having a lot of difficulty breathing over the course of a few days, and was exhausted from the week of testing. Her lungs aren’t able to expire the carbon dioxide that gets [...]
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Assessment Completed!
Testing at Duke Medical Center was completed yesterday afternoon. After all the blood tests, pulmonary tests, cardiac tests, radioactive eggs and toast, isotope IVs, rehab program activities, numerous meetings and questionairres, we are more than convinced that Duke is the place to be! They are so thorough, professional and supportive. The week of testing has [...]
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Hosptial Bed To The Running Track
Last night Amber spent the night in a VIP private deluxe room at Duke Medical Center. She was looking very comfortable there. The first thing the pulmonologist said to her was, “Ms. Wesemann, we don’t want you to think all our rooms are like this”. She did get VIP treatment though, as it seems all [...]
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Update From Duke
Yesterday began Duke’s week-long lung transplant program assessment. For the first test, Amber had to eat radioactive eggs and toast so they could watch how her body digests food. This test is called gastric emptying. After about 4 hours, her stomach was empty, then she had labs drawn. They took 23 viles of blood to [...]
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We Made It
After 16 hours of pleasant travel, we arrived yesterday in Durham, NC. Traveling in the 25′ RV, “The Chalet”, was nice- us passengers could sleep on a comfortable bed, make lunch, sit at the table and play games, listen to CDs, read and talk. The pilot drove expertly for 10 hours the first day and [...]
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On To Duke
After Amber’s scary episode on Monday, things are looking up. We are now full tilt boogey making plans for a road trip to North Carolina. She is looking good, feeling better and her white blood cell count is higher. She doesn’t need the Medi Vac, but commercial airline travel is still not a good option, [...]
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Roller Coaster Ride
Thank you Lindsey for your update- it truly has been a packed 24 hours. Amber has had an even more difficult time breathing these past couple of days and yesterday morning she couldn’t “catch up” after eating breakfast and walking to the bathroom. These are activities that most people take for granted, but it required [...]
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As Things Progress
Posted – 12/02/2006 : 1:00:16 PM
Greetings! During these past days we have met with a thoracic surgeon and a lung transplant doctor at Brigham and Women’s Hospital. They were both very helpful, supportive and informative. At this point, another lung transplant is what Amber needs. Although there exist several different procedures to try and [...]
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What’s Happening Now
Hello family and friends; thank you for your calls, messages, thoughts and prayers. Amber would like you all to know that she is very appreciative and is having a difficult time responding right now. She is in chronic rejection of her new lungs which makes it difficult for her to breathe, and therefore to go [...]
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Strength In Numbers
The waiting game is amping up, people. Besides the “routine” hospital events, you know, like, needle sticks, nasty medicinal mouthwashes, neighboring patients who moan and groan, breathing treatments, hall walking and stationary bike riding (now in the room!), trips to the cafeteria, and more, we are dealing with the increasing pressure of WHEN. The staff [...]
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She Is Out!
Hi all. I just finished speaking with Amber and Laurie and wanted everyone to know that Amber has been released from MGH and is now residing at her mom’s house in Marblehead. It is truly a very Merry Christmas for Amber, her family, and all of those who love Amber. You can hear the excitement [...]
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First Shower
Amber wanted to let everyone know that she took her 1st shower yesterday (45 minutes) and said it has never felt better! She seems back to her normal self, calling me several times a day, placing food orders with us to bring in when we visit and as always asking a million questions about THE [...]
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She’s Amber
To all who love Amber: I am Amber’s aunt and I’ve known her for her entire life. It’s been my sincere pleasure to provide you with information about how Amber has been healing, and to some degree, try to relate to you what she’s experiencing. We’ve gotten wondeful feedback from many people who are following [...]
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Moving Forward
Amber continues to move forward on her healing path. She is off the sedation medication completely and is more lucid than she’s been since surgery. The nurses insist that she get out of bed and into a sitting chair several times per day and she has to breathe into a spirometeer, which measures her lung [...]
Posted in Transplant Journey 3 Comments
Breathing On Her Own
Amber had her breathing tube taken out this morning and she’s breathing on her own, with her new lungs
Today will be an anniversary for her and we will remember it, vividly. We have been excitedly awaiting this day, knowing that now she can proceed more rapidly with her recuperation. She is doing really well, [...]
Posted in Transplant Journey 1 Comment
Breathing Tube Out?
Hello everyone, Amber is doing really well, considering that she is still intubated, sedated and in the ICU. She is quite weak and still goes from being “awake” with her eyes open to asleep the next minute. All her vitals are great – she has less secretions, her temperature has been normal, her kidneys are [...]
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Waking Up
Over the past several days, Amber’s “waking up” has been a difficult process. The nurses work to find a balance with the medication to allow her to be up, yet not aggitated. Since she is not yet ready to have her breathing tube removed, her awake times are very uncomfortable. Her medications also make her [...]
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ICU Psychosis
The nurses said that Amber was awake much of the night last night. Today she is rather tired and seems to be in a state of what’s called “ICU psychosis”. It is normal for someone to be disoriented when they’ve been on narcotics and their sense of day and night, or time, is confused. Dr [...]
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Ventilator Turned Down
Today, Friday, Amber is sleeping and resting on and off. Her ventilator settings have been turned down today and the doctors will be watching how her new lungs respond to having less resistance support. As the ventilator settings keep getting adjusted down and it supplies less and less support, she will eventually be breathing under [...]
Posted in Transplant Journey 1 Comment
Her Eyes Are Open
Hi everyone, today Amber is the most awake that she’s been since surgery. her eyes are open, she is communicating more with her nurses and she is still very uncomfortable with the breathing tube and her position in bed. It’s a positive thing that she’s more cognizant, though she will probably remember this [...]
Posted in Transplant Journey 2 Comments
Her Signs Are Good
Today Amber remains in stable condition. Her signs are good, she is breathing with minimal help from the ventilator and she moves in and out of various stages of awakeness. The doctors removed 2 of her chest drain tubes, but there are no other changes planned for now, that we know of. The nurses use [...]
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We Love You
Today Amber continues to float between sedation and awakeness. It is in her best interest to spend more and more time awake, however, it is very uncomfortable for Amber. She has been lying basically in the same position since her surgery so she is sure to feel stiffness and discomfort. The breathing tube in the throat [...]
Posted in Transplant Journey 3 Comments
We Will Remember For Her
Amber continues to do well with her recovery. Her tidal volemes have improved, her oxygen saturation is good and her pulmonary artery pressure is stable. The doctors were able to remove a line that was monitoring this pressure, which is a good sign. Each monitor and line she is able to shed moves her closer [...]
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The Lion Sleeps Tonight
“The lion sleeps tonight”, and today. The nurses have had to give Amber mega doses of sedatives to keep her down. They are amazed at her levels, given her small body mass. As a child, she hated having to go to sleep. Her parents tell a story about how one night she cried and kicked [...]
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Vulnerable State
Today Amber is sleeping restfully due to the heavy doses of sedatives she’s being given. Is is still important for her to remain in this induced coma, (as we like to call it, sleeping) state and will be so for a couple more days. We patiently await the time for her to be extubated (remove [...]
Posted in Transplant Journey 5 Comments
Vital Signs Are Holding Steady
Today Amber’s vital signs are holding steady and everyone is still impressed, relieved and amazed at how well she’s doing. She continues to try to wake up from the incredible amount of sedation she is under, but at this stage, she still needs to be kept asleep while the doctors slowly wean her off the [...]
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Amber Remains Stable
Amber remains stable and well cared for in the Surgical Intensive Unit (SICU) at MGH. Her room is a positive pressure room designed to keep out germs since her immune system is suppressed in order to prevent rejection of the new lungs. We are able to watch her sleep from behind glass doors and send [...]
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Email From Aunt Susie
Hi all, we wanted to let you know that Amber is doing very well. All the love and support is amazing and the energy is most definitely felt here. Last night 20 membes of the family and friends were at the hospital until after midnight waiting to hear the results of her transplant surgery. Today, [...]
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Amber’s Operation Finished
Amber’s operation finished around 12:15 AM. Her surgeon said she did very well and they are very peased with the function of the new lungs. She did have to go on cardiopulmonary byupass for a while during transplantation of the second lung.
Currently she is in the surgical intensive care unit and stable. She is receiving [...]
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Susie’s Logging Off