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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
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Yearly Archives: 2006
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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Set To Go…
I was dischcharged from the hospital today from my “tune-up.” I got my fluids topped off and my white blood cells charged up. Ready for the long haul down to North Carolina!
We will be leaving tomorrow morning. I anticipate a week of testing for the evaluation at Duke, all of which I have done before [...]
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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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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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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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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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Another Year Later