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Jennie
Member
Username: Jennie
Post Number: 36
Registered: 03-2010
| | Posted on Tuesday, January 03, 2012 - 10:11 pm: | 
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What a frustrating situation! My pfts have been falling for a couple of months. This winter I just keep getting sick, and being short of breath. Two weeks ago was coughing up really bad stuff and was so short of breath. Called my transplant center and they told me to go to an urgent care facility, the were short of docs. Was treated for bronchitis, just finished antibiotics and got worse right away. Today went to the clinic and my FEV-1 had dropped 30 points! Had a catscan today and will have a bronch tomorrow. Kind of scary. I have been having a great time the past five years, ups and downs for sure but this has me a little worried. It would be good to hear your brave stories of recovery. |
gratefuldeb
Member
Username: Gratefuldeb
Post Number: 161
Registered: 05-2009
| | Posted on Thursday, January 05, 2012 - 03:12 pm: |
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Hi Jennie,
I'm a heart recipient, so I can't speak to your specific issues, but I just wanted you to know that I am thinking about you and hoping you have received some reassuring news by now. I know how scary it can be when problems crop up, as I have a dear friend dealing with multiple lung infections. Do your best to stay positive-and please keep us informed when you find out what is going on.
All the best,
Deb
Debra
Heart Tx 9/08
Stanford University Medical Center
Dx: Right sided heart failure due to a rare form of muscular dystrophy
I have a beautiful new heart from a wonderful donor named Robin, to whom I will be forever grateful.
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Jay Lackritz
Forum Leader
Username: Jay_ny
Post Number: 495
Registered: 01-2007
| | Posted on Thursday, January 05, 2012 - 08:04 pm: |
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Jennie,
So sorry to hear about your situation. 30 points! Really sounds like you were hit with some serious infection for your numbers to drop so radically. Sounds like the antibiotics were starting to work, but you weren't on them for long enough.
I am a little over 4 1/2 years out. I had a couple of acute rejection episodes in the first year that were handled with the standard 3 days of 1,000mg of Pred. My maximum FEV1 was around 76% a couple of weeks after transplant, and it began to fall until it was in the low 50's and they were preparing me for the chronic rejection treatments, and I had an appointment to get my blood washed out, but I was lucky, and came down with shingles, so they sent me home. By the time the shingles were gone, my FEV1 had stabilized in the mid 50's and they cancelled the treatments. Now, about 3 years after that, my FEV1 is still in the mid 50's, so they let it go and so far so good.
I would love to hear your outcome and what they plan on doing, such as the RAT-G treatments or anything else.
I wish you the best, and hope your numbers start to rise.
Good breathing, Jay
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ajs
Forum Leader
Username: Ajs
Post Number: 707
Registered: 03-2008
| | Posted on Thursday, January 05, 2012 - 08:13 pm: |
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Hi Jennie,
I know how scary that can be. The first year, I like Jay, had some ongoing minimal rejection. I felt great, but was scared my FEV would never come back up. After a year, I insisted they put me on Azithromycin, and my FEV went up 15% in a month. So, if you are NOT on AZ, I suggest you get assertive about it. I also had a RATG treatment which was not fun (at least the first day), but after that my FEV went to new heights.
I just drove back this afternoon from Duke and my 6-month check-up, and for the first time, they skipped the bronch! Rest assured, you CAN come back but they have to be aggressive. What hospital are you at?
Armand
Double-Lung transplant at Duke on 10/27/08
Pulmonary Fibrosis with traction bronchiectasis
http://healthierlungs.com
Live each day as if you were living forever, and live each moment as if it were your last.
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Jennie
Member
Username: Jennie
Post Number: 37
Registered: 03-2010
| | Posted on Friday, January 06, 2012 - 09:21 am: |
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Thanks all for your posts. They really help and I need to remember to respond to other folks having trouble. I'm at University Hospital in San Antonio. After the bronch on Wednesday they decided to treat me with prednisone, 40mg a day for the first week and then down 5mg every week. The most surprising thing to me is that they switched me from Rapamune back to Prograff. Ive had two episodes of severe renal failure so in late Oct. i began taking Rapamune instead ofPrograf. Because of the timing of my beginning to have problems coinciding with starting Rapamune and the dramatic drop in pulmonary function they switched me back to Prograf. Apparently very rarely Rapamune can cause very serious lung problems.Too bad for kidneys but they thought it was the right thing to do. I have been taking Azithromycin for about a year. |
Jennie
Member
Username: Jennie
Post Number: 38
Registered: 03-2010
| | Posted on Saturday, January 07, 2012 - 09:53 am: |
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By the way, what is an RAT-G treatment? I can't find any info on this. |
ajs
Forum Leader
Username: Ajs
Post Number: 708
Registered: 03-2008
| | Posted on Saturday, January 07, 2012 - 10:44 am: |
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Hi Jennie,
Here's the most plainly written explanation I could find. It's commonly used as a first line of defense when FEV becomes reduced.
http://www.medscape.com/viewarticle/437182_6
There is a woman on the board named Joanne who was diagnosed with chronic rejection like 7 years ago, and she's still here compiling books, etc. She takes Azithro every day. That might be something you ask about.
Here's her quote from my AZ. thread.
"On Azithromycin 250mg everyday. Have been since 2004 when went into chronic. I believe in it."
Double-Lung transplant at Duke on 10/27/08
Pulmonary Fibrosis with traction bronchiectasis
http://healthierlungs.com
Live each day as if you were living forever, and live each moment as if it were your last.
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Jay Lackritz
Forum Leader
Username: Jay_ny
Post Number: 496
Registered: 01-2007
| | Posted on Saturday, January 07, 2012 - 12:59 pm: |
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The RAT-G treatment has been used for chronic rejection for about 2 decades now.
Here's a study from 1999 that suggests its use for acute rejection:
http://chestjournal.chestpubs.org/content/116/1/127.full
Here's an interesting note from someone on their experiences with the RAT-G treatment, just as an FYI:
http://colormehealthy.blogspot.com/2010/03/my-experience-with-ratg.html
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ajs
Forum Leader
Username: Ajs
Post Number: 709
Registered: 03-2008
| | Posted on Saturday, January 07, 2012 - 03:38 pm: |
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Hi Jay,
I know Christy Hamilton who's blog that is. A fellow Duke-ee. She just passed 10 years in November. I also met a woman at my visit ion Thursday who must have been 70, who is 7 1/2 years out. I love talking to people in the waiting room at clinic who are on the list. It gives them concrete proof of how many people get their lives back, for however long.
Double-Lung transplant at Duke on 10/27/08
Pulmonary Fibrosis with traction bronchiectasis
http://healthierlungs.com
Live each day as if you were living forever, and live each moment as if it were your last.
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Jennie
Member
Username: Jennie
Post Number: 39
Registered: 03-2010
| | Posted on Monday, January 09, 2012 - 07:27 am: |
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Good information and I'm grateful to all. Still feeling crappy, maybe a little worse. I'm on Azithromycin and have been for about 7 months. Will probably hear soon if anything developed in cultures taken from bronch on Wednesday. Keeping my spirits up. Thanks to all. |
ajs
Forum Leader
Username: Ajs
Post Number: 710
Registered: 03-2008
| | Posted on Monday, January 09, 2012 - 11:11 am: |
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Hi Jennie- Are you on AZ EVERY day? Or just three times a week like lots of us? What I was saying is maybe you ought to ask about going every day for a while. Like Joanne has done.
Double-Lung transplant at Duke on 10/27/08
Pulmonary Fibrosis with traction bronchiectasis
http://healthierlungs.com
Live each day as if you were living forever, and live each moment as if it were your last.
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Jennie
Member
Username: Jennie
Post Number: 41
Registered: 03-2010
| | Posted on Monday, January 09, 2012 - 04:02 pm: |
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I'm on every day. Have been for quite a while. I just called the transplant center to tell them that after 6 days of 40mg prednisone I still wasn't feeling any better. Hmmmmm. They just don't know. These are the times when I feel like I get better in spite of my doctors. They just won't make it clear to me what might be going on. They don't follow up after putting me on a treatment, they told me to come back in two or three weeks. No info about when I should be feeling better or when I should call if Im not feeling better. It's so frustrating. They make me feel like I'm just whining about being so short of breath all of a sudden and coughing and ha ing a real heavy feeling in my chest. It just doesn't seem like I should have to work so hard to get answers. |
Keith
Member
Username: Kbloomer
Post Number: 174
Registered: 12-2009
| | Posted on Monday, January 09, 2012 - 06:32 pm: |
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I had a drop in PFT's about a year out. After about 3 months of repeat visits, x rays, ct scans, blood tests, and bronchs, fluid finally showed up on an x ray.
The fluid was outside the lungs but compressing the left lung. I stayed in the hospital to have a pleurex catheter installed to drain the fluid. I was able to drain the fluid at home myself for a month. The fluid never returned and we don't know what caused it. I am now over 3 years out and doing well with no recurrence.
Unfortunately it seems that sometimes they don't know the cause of things or when to expect improvement. Just be persistent and be sure to keep on top of things.
Good Luck.
Bilateral Lung Transplant 11-12-08
Brigham and Womens Hospital, Boston, MA
Scleroderma, Pulmonary Fibrosis, Pulmonary Hypertension
www.caringbridge.org/visit/keithbloomer
Volunteer: RI Organ Donor Awareness Coalition, New England Organ Bank, RI Blood Center |
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Jennie
Member
Username: Jennie
Post Number: 42
Registered: 03-2010
| | Posted on Thursday, January 12, 2012 - 04:03 pm: |
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Yup, good advise, Keith and everyone. Today was my third day of 500mg IV Solumedrol. Still have crap in my lungs, but do feel better. I also won't be surprised if it takes a while because thanks to my precious baby granddaughter tested positive this morning for RSV. I'm so relieved that she's doing better that I feel better. She got it fast and furious. Went down for a nap and my daughter checked on her and she was gasping and had dusky lips! She was admitted but is responding to treatment. Thank God.
Thanks for all of the great information and stories. |
Joanne Schum
Member
Username: Joannebutterfly
Post Number: 281
Registered: 11-2011
| | Posted on Friday, January 13, 2012 - 11:30 am: |
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I have had chronic rejection "label" since 2004. Immediately my center ADDED more meds to my list of anti rejection. I HAD been on Prograf, Cellcept, Prednisone. They ADDED - Rappamune and every day 250mg of Azithromycin. My PFT's went from a low of 26% FEV1 to 65% over the next 2 months. Stable since then. I did go off Rappamune in 2008 as I developed pneumonia for the first time since I got lungs in 1997. Have been fine since that removal. My team will start Rappamune if I have a drop again, and also try some other new things out there.
So happy for all the new drugs, here and now, and the one's in the "works" and available soon.
Joanne
Joanne Schum
Bi-lateral Lung Transplant, Sept 12, 1997,due to CF
University of North Carolina, Chapel Hill
Web Site: http://health.groups.yahoo.com/group/LungTransplantSupportForPatients/
Chat Site: http://xat.com/LungTransplantSupportforPatients |
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Jennie
Member
Username: Jennie
Post Number: 43
Registered: 03-2010
| | Posted on Friday, January 13, 2012 - 06:30 pm: |
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So now I have another lung infection and they prescribed Levoquin. Finished Solumedrol yesterday, still on 40mg prednisone. Hopefully now I'll turn around. I always have so far. I'm also taking 250mg of Aziyhromycin.
Just found out from the pharmacy that the nurse didn't call in the prescription, it's 5:30'and the pulmonary specialty nurse is suggesting i go to the ER. What a day! |
Jennie
Member
Username: Jennie
Post Number: 44
Registered: 03-2010
| | Posted on Saturday, January 14, 2012 - 05:07 pm: |
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Was admitted at 3:00 a.m. With double pneumonia. At least it's not triple pneumonia! Ha! |
gratefuldeb
Member
Username: Gratefuldeb
Post Number: 162
Registered: 05-2009
| | Posted on Saturday, January 14, 2012 - 10:20 pm: |
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Hi Jennie-
You have a great attitude!
Sorry to hear that you are in the hospital, but that may make it easier to get some good I.V. antibiotics into you. When I had my lung infection, they hit me with several different medications until they figured out what kind of bug they were dealing with. Much easier to do as an inpatient. In any case, I hope you are feeling much better soon!
Debra
Heart Tx 9/08
Stanford University Medical Center
Dx: Right sided heart failure due to a rare form of muscular dystrophy
I have a beautiful new heart from a wonderful donor named Robin, to whom I will be forever grateful.
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Paul
Member
Username: Bullion78
Post Number: 1
Registered: 01-2012
| | Posted on Friday, January 20, 2012 - 08:46 am: |
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Good Evening/Morning all
First time poster here, been lurking since just prior to Christmas reading up on everybody's experiences and trying to gain some knowledge on how others have dealt with chronic rejection.
Late in November after 8 years of PFT's between 85% - 90%, my lung function has suddenly taken a battering, I was admitted over the Christmas period and hit with IV ABs and Methyl pred, changed to cellcept from Imuran, had my follow up PFT today and it has dipped another 10% down to 50% which is kinda freaking me out a tad. I am being admitted next week for Atgam treatment so keeping everything crossed that this will stabilize by lung function. I notice a few on this forum have spoken of Photopherosis, I did mention this to my consultant today yet her response didn't seem too favorable to the idea and she intimated that it hadn't been too successful, should I press her further on giving this treatment a try?
Thanks for listening guys. |
Jack
Forum Leader
Username: Johnhollenbach56
Post Number: 547
Registered: 12-2009
| | Posted on Friday, January 20, 2012 - 09:07 am: |
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Morning Paul, I have not gone through it though a friend is currently doing Photopherosis, and she says she feels better and has noticed a marked improvement. Not sure where you are, my center does not use a 'consultant' - we have transplant coordinators, nurses, doctors and surgeons, is a consultant a medical or support person? I'd take it to the next level and get another opinion as I would want to explore all viable treatments . . .
As a first timer here let me welcome you to TB, when you get a moment you might want to add a signature box letting folks know where and when you were transplanted and your underlying condition for tx, this saves others from asking . . .
Stay well,
Jack Hollenbach
Received double lung transplant August 2 & 3, 2007 for COPD at UCSD Thornton Hospital, San Diego, CA
Live each day to your fullest, for it is a gift to be treasured |
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ajs
Forum Leader
Username: Ajs
Post Number: 712
Registered: 03-2008
| | Posted on Friday, January 20, 2012 - 12:04 pm: |
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Paul- Have you been on Azithromycin all along? If not, I would insist on getting on that once a day, as opposed to the maintenance dose of three times weekly. Go up about six posts and read Joanne's post in this thread. Good luck!
Double-Lung transplant at Duke on 10/27/08
Pulmonary Fibrosis with traction bronchiectasis
http://healthierlungs.com
Live each day as if you were living forever, and live each moment as if it were your last.
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Paul
Member
Username: Bullion78
Post Number: 2
Registered: 01-2012
| | Posted on Friday, January 20, 2012 - 10:11 pm: |
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Thanks for your responses Jack and ajs, I am a CF patient post bi lateral tx patient from Australia, was done back in 2003.
I have been on AZ 3 times a week but only since the rejection started back in Nov, I have taken it periodically over the years with infections but never continually. I am actually quite annoyed that my centre have not advised that I should have been on it constantly but I guess I have had such a good run up until the rejection that I had become so complacent about my health and had this mindset that I was virtually cured, I had forgotten that I was even sick. I am going to up my AZ dose to 250mg daily immediately and keep everything crossed that the Atgam does the trick next week. |
Paul
Member
Username: Bullion78
Post Number: 3
Registered: 01-2012
| | Posted on Friday, January 20, 2012 - 10:26 pm: |
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Thanks for your responses Jack and ajs, I am a CF patient post bi lateral tx patient from Australia, was done back in 2003.
I have been on AZ 3 times a week but only since the rejection started back in Nov, I have taken it periodically over the years with infections but never continually. I am actually quite annoyed that my centre have not advised that I should have been on it constantly but I guess I have had such a good run up until the rejection that I had become so complacent about my health and had this mindset that I was virtually cured, I had forgotten that I was even sick. I am going to up my AZ dose to 250mg daily immediately and keep everything crossed that the Atgam does the trick next week. |
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