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- At the Docs now waiting from some good test results... 2010-10-26
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Category Archives: Transplant Journey
ICU Psychosis
Subject: icu psychosis
Message: There is not much information on the web about ICU
Psychosis. A week ago today, my dad underwent a double lung
transplant. He is doing well except for this psychosis. We as a family
feel helpless. We have not been allowed to go into his room, and we
can only watch him from a glass window. [...]
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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Updates
Posted – 12/05/2006 : 12:10:20 AM
Hi all. Thought I would try and post here to let everyone know whats going on to the best of my knowledge. In case you’re wondering who I am, this is Lindsey, one of Rick’s daughters and a resident of 49 Vine St. – Amber’s homebase these past few [...]
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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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No MGH
As some of you may know Amber went to MGH last Wednesday and expected to be admitted. The doctors decided that she would be getting the same treatment there as she would at home- and therefore preferred her not to be admitted. So Amber remains with her Mom, Dad, sister, and family in Saugus. Susie [...]
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Back To MGH
This afternoon I am headed back to Mass General Hospital. Over the weekend my breathing seemed to diminish and it became harder and harder to breath without oxygen. Even walking flat surfaces and in the sitting position was difficult. I am now on oxygen full time. We think it is best that I be re-admitted [...]
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Hello
For the past 26 years (well, 23 for me), we’ve had a plan or a next step in treating Amber’s illness, which has made dealing with it slightly more manageable. At first we held out hope for a cure, trying to contribute as much as we could by participating in CF walks and other fundraising [...]
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BOS
Posted – 11/03/2006 : 08:35:19 AM
This article is a bit technical, but I think you can read it and understand the main points.
http://www.jhltonline.org/article/PIIS1053249802003984/fulltext
Less technical article:
http://ajrccm.atsjournals.org/cgi/content/full/166/4/440?ijkey=2ef0dca324e0bdea7535bbac80967c611bd7522a&keytype2=tf_ipsecsha
Some innovative therapies:
cyclosporin: http://www.jci.org/cgi/content/full/115/5/1133
fundoplication: http://www.dukemednews.org/news/article.php?id=5499
photopheresis: http://jtcs.ctsnetjournals.org/cgi/content/abstract/117/6/1063
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Facing The News
I am sorry I am not able to personally call all of you and explain the situation– good reason for this site. I know there is a large phone tree out there though. The news still hasn’t fully sunk in with me either. It seems so unreal that I walked 3 miles on the treadmill [...]
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Unfortunate News
I am not sure how Amber would want me to present any of this news to you, but I guess it’s kind of like ripping off a band-aid. Amber’s doctor’s appointment on Wednesday was not one of the more positive visits she has had. Through process of elmination the doctors have determined that Amber is [...]
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Bitter Sweet Discharge
This afternoon I am being discharged. I am excited to go home, but at the same time a little ambivalent. I had PFTs this morning and they were not improved– lower at 27%. The docs tell me “not to be so worried about the numbers but to base it on how I feel. For now [...]
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Wednesday Night at MG
Now all is quite here at the good ole’ MGH. Company has left and I now have time to return emails and write this update. Stuffed from all the food people have been briging or sending in (thank you!). The good news…..I am feeeling much better. The SOB is subsiding slowly, walking a little farther [...]
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Update From Mass General
I am finally up to writing an update. It has been a long and rough three weeks. I know Mackenzie and Leah have sent out emails so you have some idea what is going on…..and don’t worry thats about as much as I know too. There are few answers about what is actually wrong with [...]
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Email From Leah
Hi Everyone,
Mackenzie forgot to mention that Amber did not get the surgery as planned yesterday. After waiting all day, without food or water, her doctor came in her room around 8pm to tell her that her x-ray looked better than her previous one, and that they did not want to risk doing the procedure [...]
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Email From Mackenzie
Got this from Mackenzie today.
Hi Everyone- Amber wanted me to send a quick email to give you an update on things. She is currently in Mass General due to a shortness in breath and decrease in lung function. The doctors are having a little trouble figuring out what is causing her condition so they are [...]
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February 2006
It has been almost ten weeks now since I got the “call of my life.” I must admit I never in a million years thought I would have come this far so quickly. The doctors, my family, and other transplant patients are stunned when I tell them I was in and out of Mass General [...]
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Minor Setback, Not My Lungs
Originally posted by Amber on 2/15/2006 at 8:07:58 PM
On Sunday morning I woke up with a headache and a mild fever. About an hour later I started to get severe chest pains, curling up in the fetal position for comfort. Of course, it was the middle of a Nor’easter (about 12″ at that point) here [...]
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Rommies Again For Now
I hope everyone has been enjoying the first week of 2006. I have found the start of the year to be more rewarding that any year past. Of course, I attribute this to Amber’s success in her healing process. I am staying with her at her house in Waltham this week. Steve is visiting the [...]
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Home In Waltham
Today I am exactly eight weeks out! Feeling better than ever. I am home to my newly “remodeled” apartment, driving, and back to doing my daily shopping excursions. Still wearing a mask in crowded public places and avoiding children, even though I miss the kids I sit for dearly. I have another doctor’s apontment tomorrow, [...]
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Breathing Easy
It seems silly but these days seem to fly by. Each day my mom and I try to get our for lunch and errands or shopping, and each day I last a little longer. On a few occasions I have even worn her out and she had to tell me it was time to go [...]
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Stronger By The Day
I am progressing to recovery quite quickly as I mentioned before. The doctors have already cut my twice-weekly apointments down to once a week, on Wednesdays, although it is still a long day at Mass General with blood work, x-ray, PFT’s (breathing tests) and the transplant doctor, plus any other approintments (endocrine, eye, etc). This [...]
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Happy New Year
Hi everyone and Happy New year from Diedre!
It certainly is a happy one here in Marblehead! I’m at Laurie’s visiting Amber and it is so wonderful!! The last time I saw Amber, it was just a week after the transplant when Alli and I made the trip from Oregon and Amber was still intubated and [...]
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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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Home For Christmas
We couldn’t believe it when Dr. Ginns came into Amber’s room today and said that Dr. Wain was so impressed today with her bronchoscopy, done this morning, that she could go home! He said that Amber is way ahead of the usual healing process. The home health care team spent the better part of the [...]
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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, [...]
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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 [...]
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Nine Days Later
It’s amazing to see the progress Amber has made in the last week. last Thursday wew were begging to see her baby blues open- now we can’t get her to stay asleep for more than a couple of hours at a time. As Susie has said, the chest tubes are coming out gradually. hopefully this [...]
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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 [...]
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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 [...]
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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 [...]
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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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Continuing To Do Well
Amber is continuing to do well. She has been taken off her blood pressure medicine and is doing fine without it so far. The doctors are hoping to gradually reduce her reliability on the ventilator over the next couple of days. The nurse told Laurie that she woke up again during the night, even though [...]
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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 Remains Heavily Sedated
The latest is that Amber is doing very well. her primary doctor said that she is extremely optimistic. Amber remains heavily sedated (not conscious) and stable. She remains on the breathing machine.
My opinion is that this means the concern of post-operative bleeding or complications from the surgical technique are minimal if not eliminated all together. [...]
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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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First Transplant Surgery
Laurie called me and gave me updated information. She will call back periodically to update me so I can update the forum.
Amber went into surgery around 1:00 PM today. The lungs arrived around 6:00 PM. She is doing very well and the nurse said the emvironment in the operating rom is very positive. The first [...]
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