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kim1985
Member
Username: Kim1985

Post Number: 2
Registered: 04-2012
Posted on Thursday, April 26, 2012 - 11:03 am:   Edit Post Delete Post Print Post

Hi there,

I found the forum after typing in a general search about chronic rejection after double lung tx. I am 26 years old and I am approaching 5 years post tx on July 1st this year. I am English but had my transplant in Valencia, Spain after moving to Spain a few years previous. I needed a tx due to CF as I caught flu at the ages of 18 just as I was leaving England to start a new life in Spain. Everything went well, obviously a few ups and downs along the way but I was told last year that I am in chronic rejection after numbers were falling very slowly. I was taken into hospital last year for a bronc and told my lungs looked good, however I am told that the small airways are being affected by inflammation. I was put on corticosteriods through the vein which got me back a bit of my lost lung function. I then stabilised up until I caught a cold early this year and the numbers have started to fall slowly again. I am very concerned about this and was wanting to hear of others who are currently in chronic rejection and what treatment you received. I am currently taking Everolimus (certican) and mycophenolate sodium (myfortic) along with 10mg prednisolone. I have started taking Azithromycin a bit more now to try and help the inflammation too. I am back to see my doctor in June and hope that things have stabilised or if not I would like to go back into hospital to try the corticosteriods again to see if this has any effect. I have lost 500ml of lung function in 2.5 years and realise if this continues that I won't be in a very good position in another 2 years or so.

As I said before, I would really like to hear from others and their experience of chronic rejection and if has been stabilised and if so, what medication was used? Many thanks and hope everyone is well :-)
Lindsey
Member
Username: Lindsey3

Post Number: 94
Registered: 06-2007
Posted on Sunday, May 06, 2012 - 12:04 pm:   Edit Post Delete Post Print Post

I can't really offer much advice on what helped me stabilize, as I am going through the same thing right now. I just wanted to extend a "virtual hug" to you and say I know where you are coming from. It is stressful trying to be patient and wait for a treatment to hopefully work. I hope they are able to find something to stabilize you this second time around.

I was diagnosed with Chronic Rejection February of this year after a slow drop n pulmonary function as well. I am 5 years out this month (May 2012). My docs changed my meds from Prograf and Cellcept to Prograf and Rapamune, increased my prednisone dosage from 7.5mg to 15mg and added Zithrmoax and that seemed to have me stable. Then I ended up with an active CMV infection last week and that has taken its toll on me too. I am hoping that the new med change will still work at keeping me stable once I get over this CMV infection but we shall see.

I hope that you have some success with the new treatment and that your appointments in June show that they are working.
Lindsey
28 with Cystic Fibrosis
Double Lung Transplant at Mayo Clinic ~
May 2, 2007
muppditt
Member
Username: Muppditt

Post Number: 1
Registered: 06-2012
Posted on Monday, June 11, 2012 - 11:53 am:   Edit Post Delete Post Print Post

Hi Kim, I am new here and just went through several treatments for acute and then chronic rejection. In my case, my FEV1 plummeted rapidly. The rejection was swift and violent....I went from dancing 4 times a week up until February 2012 to being basically homebound and eventually on 24/7 oxygen starting in April. I have also lost about 1 liter of lung capacity.

People's episodes of rejection are different, so keep in mind that treatments that work for some won't for others, and vice versa. Your treatment will be based on your doctors' findings specific to you.

That said, since mid-March my treatments have been Solu-Medrol (more than once) and then Rituximab to treat the corticosteroid-resistant chronic rejection. The acute rejection responded to the Solu-Medrol, but the chronic rejection did not. The Rituximab was used to treat the antibodies that were causing the chronic rejection...that worked and for the moment I have stabilized.

My doctors also spoke of some 'dialysis' type treatment to treat the antibodies, but that didn't happen since the chronic rejection responded to the Rituximab.

I also take azithromycin to help with inflammation.

Since the bronchiolitis obliterans has now advanced significantly, I am awaiting a 2nd transplant here in Switzerland.

Stay well, be sure to eat enough as your body needs a LOT of calories to deal with labored breathing. Do what you can to keep your spirits up....I hope your treatments are successful.
Joanne Schum
Member
Username: Joannebutterfly

Post Number: 293
Registered: 11-2011
Posted on Monday, June 11, 2012 - 01:01 pm:   Edit Post Delete Post Print Post

Hi Kim,

I have a friend who is 14 years post double lung due to CF who also lives in Spain and received her lungs there. She is also in chronic.

Sounds like you are on some good drugs. Also, they are willing to retransplant you?
I would like to share with Sandra what treatments you are receiving...hoping she is also on the same. I don't think she mentioned retransplant, seems they felt there are so few organs available, that you get only one chance. Hope that has changed.

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
Hostess Rise'
Board Administrator
Username: Rise

Post Number: 17451
Registered: 05-2003
Posted on Wednesday, June 13, 2012 - 06:06 pm:   Edit Post Delete Post Print Post

Just wanted to say hello to all our new members.

I have CF and received my first set of precious lungs in 96 and my second set in 05.

The best advice that I can give you all is to exercise and eat only healthy foods. Your body will thank you.

Sorry so short- I will write again soon.
CF- dx at 2yrs. 2nd double lung tx-05 JMH
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kim1985
Member
Username: Kim1985

Post Number: 3
Registered: 04-2012
Posted on Monday, June 18, 2012 - 12:09 pm:   Edit Post Delete Post Print Post

Hi again everyone,

Thank you for your messages...well I went back today for another check and my FEV1 & FEC has declined again. Its all very slow and have been told that if it doesnt stablise then I am looking at re-transplantation in the next 2 years possibly. Thankfully my centre in Valencia does this & providing all tx assessment tests are OK I have been told I am an 'ideal candidate'.

My doc listened to my chest, can't hear any infection, im not coughing anything up, the inflammation seems to be better in the lower airways but after a CAT scan today it does show more areas of chronic rejection at the bases of both lungs.

They have upped my Everolimus (certican) immunos & increased my steriods to 15mg. I am back again in 1 month to see if anything has stablised. After that, Im not sure. I currently have FEV1 of 1.49 & FEC of 2.54.

I am worried about a 2nd tx, but i am very lucky that this could be a possibility for me. Are there any other complications of a 2nd tx? I suppose again, everyone is so different.

To Joanne...I am at hospital La Fe in Valencia, if your friend Sandra would like to ask me anything, please let me know.
Hostess Rise'
Board Administrator
Username: Rise

Post Number: 17465
Registered: 05-2003
Posted on Thursday, June 21, 2012 - 07:49 am:   Edit Post Delete Post Print Post

Hi Kim

I had a second double lung transplant. My first tx, I was out in one week while my second tx took a lot longer. Regarding post tx treatment, I am doing better with the second tx than I did with the first.

Take the best care of yourself and what will be will be. I believe we can all improve our chances if we take care of ourselves body, mind and spirit.

You are in good hands! Thank you for sharing your story.
CF- dx at 2yrs. 2nd double lung tx-05 JMH
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wejr
Member
Username: Wejr

Post Number: 1
Registered: 06-2012
Posted on Thursday, June 28, 2012 - 03:11 am:   Edit Post Delete Post Print Post

Hi
I am 4 yrs post double Lung plant due to cf. (harefield, UK) No rejection as yet, and I really don't know what to expect when I do get it- It is all very well the advice is that fever/lung pain etc is a symptom...Does sickness ever occur? I was feeling unwell all yesterday and was a little sick (felt nauseous all day) - this morning have stomach ache. Lungs feel a bit tight but not coughing and no pain...Any advice on what symptoms you had when you rejected? Also, I did not realise a second plant was a possibility? Has anyone had one in uk?
Jack
Forum Leader
Username: Johnhollenbach56

Post Number: 578
Registered: 12-2009
Posted on Thursday, June 28, 2012 - 07:10 am:   Edit Post Delete Post Print Post

Hi wejr,

Rejection is usually found with a drop of PFT's or shortness of breath, don't think from what you describe that is it, though I would get in touch with your center if the symptoms persist as with the supressed immune system, little bugs can turn into big monsters quickly.

Not sure about second transplants on your side of the pond . . .

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
Paul
Member
Username: Paul_palmer1963

Post Number: 1
Registered: 01-2014
Posted on Thursday, January 02, 2014 - 08:07 am:   Edit Post Delete Post Print Post

Hi im tim, ive got chronic rejection. Lost 25% of lung capacity over a 12 month period... change of tablets did not work so they are now arranging radiation treatment in February.

i just would like to know if anyone has any advice to offer on radiation treatment.

also should i carry on with my job as a plasterer? Regards
Raquel
Member
Username: Rcasas

Post Number: 1
Registered: 01-2014
Posted on Monday, January 06, 2014 - 12:57 pm:   Edit Post Delete Post Print Post

Hi my name is Raquel and my husband has had 2 single lung transplants, neither of which have gone well. Now after his second he too is in chronic rejection, since March 2013. He is on rapamune, prograf, azithromycin and double strength septra. He was also recently put on a statin, pravachol, which they say helps reduce inflammation. Last April, my husband was offered photopherisis treatment, which is a "dialysis like" treatment of the blood. It is done during a 3 month period, every other week over 2 days as an outpatient. What was explained to us is that the white blood cells are separated and exposed to UV rays to kill them and then placed back into the body.

I'm not really sure how much of a benefit he got from it but he was declining rapidly and this appears to have put him in what the docs call a "plateau". This doesn't mean he is well...he just has not continued his rapid decline. Apparently, there are some studies that suggest this treatment helps reverse rejection in some people. Our center has done it to several patients but I don't know if anyone has had good results.

It isn't offered more frequently because most insuraances don't want to pay for it. We were lucky in that ours did. Right now my husband's FEV1 is 1.44, so as you can imagine he is quite winded and fatigued. He is not on oxygen yet because his SATs are in the mid 90s. However, he feels pretty sick most of the time.

Tim, I have never heard of radiation treatment for rejection. Pls keep us posted on your results. Good luck and God bless.....
Hostess Risé
Board Administrator
Username: Rise

Post Number: 17975
Registered: 05-2003


Posted on Monday, January 13, 2014 - 04:27 pm:   Edit Post Delete Post Print Post

Hi Paul
I never heard of radiation treatment for transplant patients in regards to declining PFT's.

Raquel- I am glad that your husband did well with the photophersesis- I do not know for sure if this treatment helped me but I do not believe it hurt me either. I only tried it for two months and quit.

I would focus on his diet- cutting out foods that create inflammation within the body.
CF- dx at 2yrs. 2nd double lung tx-05 JMH
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Eve
Member
Username: Esmetherat

Post Number: 1
Registered: 09-2014
Posted on Friday, September 12, 2014 - 02:07 pm:   Edit Post Delete Post Print Post

Hi There

I just ambled into this whilst looking up Chronic Rejection! I'm 26yrs post heart and lungs and I have CR too... (amongst a truck load of other annoying problems).

Paul and the rest of you if you want to know about the radiation - I have had it. I was fine until 2005 (transplant done in '88) and then I had 3 Acute Rejections in 18 months - all grade 2. I was hospitalised and drip fed the delightful Solu-Medrone! My cardiologist at Harefield suggested the TLI - or Total Lymphoid Irradiation to give its full title.

I was rehospitalised for 2 weeks to have it done. In the first week, Mon-Fri, I was carted over to another hospital in Hillingdon and zapped from neck to groin. I felt absolutely fine; it is only 1/8th of the dosage given to a cancer patient. By the end of the weekend I was nauseous, but ok. By the end of the following week, I was shattered and my white cell was on the floor. I was only allowed to go home, because I promised not to go out and not to see anyone. They told me, someone at home should look after me. I live by myself...and have done so, since '03.

It took about three weeks for me to be ok and about 6 months for me to be normal. The biggest shock was that the back of my hair fell out, but that was ok; I shave an undercut and dyed it bright colours (I'm a goth ;p) and the power surges (hot flushes) lasted about two years. BUT and this is a BIG BUTT (snigger snigger), I have not had one episode of acute rejection since AND (and this is a big AANNDD) my chronic rejection disease progression *seems* to be balanced. I'd lost 10% function and I wobble between 88-90% function on most tests these days. The TLI was done in August 2007. As I type this it is September 2014.

I would have it again in heart beat - no pun intended.

My heart also has Chronic Rejection. They haven't told me that as such, but they have told me I have all the symptoms - 'You have Coronary Heart Disease'...'You have...." Again, the ticker seems stable at the moment.

Considering I was given 20% chance of surviving the operation and 50% chance of getting to five years, I will take 26yrs :D

Eve x

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