| Author |
Message |
Marjolein
Member
Username: Marjolein
Post Number: 210
Registered: 08-2007
| | Posted on Thursday, June 09, 2011 - 03:35 pm: | 
|
Hi everyone
I have a question.
I am almost 5 years post double lungtransplant.
At the moment my EBV is is too high again, for the second time it is as high that it will need treatment. First time was 2 years ago.
I will have a PETscan done on Wednesday to check for PTLD. Hope that will be clear.
When the results are in and are clear we will start Rituximab, had the same things done 2 years ago.
At that time the scan was clear and the Rituximab worked very well.
Have any of you had this happen twice? I know it can and probably will happen when your EBV has been far too high, that it will be again.
I am just wondering how the second time went, if you had it again.
Thanks in advance!
Marjolein
27y/o, from the Netherlands
Cystic Fibrosis, Dxed at birth
Bilateral lungtransplant, August 2006
Dxed with emphysema, May 2007
http://marjoleins65roses.web-log.nl |
|
ajs
Forum Leader
Username: Ajs
Post Number: 582
Registered: 03-2008
| | Posted on Thursday, June 09, 2011 - 04:47 pm: |
|
Good Luck, Marjolein.
Double-Lung transplant at Duke on 10/27/08
Pulmonary Fibrosis with traction bronchiectasis
Live each day as if you were living forever, and live each moment as if it were your last.
|
|
Hostess Rise'
Board Administrator
Username: Rise
Post Number: 16236
Registered: 05-2003
| | Posted on Friday, June 10, 2011 - 10:25 am: |
|
Wishing you well Marj
|
vajohn
Member
Username: Jfarel
Post Number: 283
Registered: 02-2008
| | Posted on Friday, June 10, 2011 - 11:41 am: |
|
I hope it works well for your Marjolein. Sorry your are dealing with this again.
30 years old with Cystic Fibrosis
Bilateral Lung Transplant INOVA Fairfax hospital (June 23, 2010)
|
|
Marjolein
Member
Username: Marjolein
Post Number: 211
Registered: 08-2007
| | Posted on Saturday, June 18, 2011 - 08:37 am: |
|
I had the PETscan on Wednesday.
They found a spot in my right lung, not sure what it is yet.
It can be an infection but no signs of infection anywhere. It may be PTLD.
They did a CTscan yesterday to check the exact location and will do a bronch Tuesday to really check what it is.
Hope to know by Thursday..
Marjolein
27y/o, from the Netherlands
Cystic Fibrosis, Dxed at birth
Bilateral lungtransplant, August 2006
Dxed with emphysema, May 2007
http://marjoleins65roses.web-log.nl |
|
Lee
Member
Username: Lee
Post Number: 19
Registered: 02-2011
| | Posted on Saturday, June 18, 2011 - 10:29 am: |
|
Hope everything goes well for you. I will say a prayer for you.
Lee
copd with severe bronchitis-13 yrs
need lung transplant |
|
Hostess Rise'
Board Administrator
Username: Rise
Post Number: 16248
Registered: 05-2003
| | Posted on Saturday, June 18, 2011 - 11:00 am: |
|
Dear Marjolein
My heart goes out to you and I will pray for you.
LOVE
Rise'
|
Marjolein
Member
Username: Marjolein
Post Number: 213
Registered: 08-2007
| | Posted on Tuesday, June 21, 2011 - 12:44 pm: |
|
Bronch went well. They took 6 biopsies from the spot they found on the scan. Started to bleed a bit and they got 50cc out but I think the bleeding stopped quickly as my lungs are clear and I don't feel anything bubble. Not from when I woke up. Bronch took about 30 minutes.
They also did a lavage just to do some cultures as well. Also said that my lungs generally looked good :-)
Hope to have the results by Thursday, but nothing is certain
Marjolein
27y/o, from the Netherlands
Cystic Fibrosis, Dxed at birth
Bilateral lungtransplant, August 2006
Dxed with emphysema, May 2007
http://marjoleins65roses.web-log.nl |
|
ajs
Forum Leader
Username: Ajs
Post Number: 591
Registered: 03-2008
| | Posted on Tuesday, June 21, 2011 - 01:03 pm: |
|
Ik wens u het beste.
Double-Lung transplant at Duke on 10/27/08
Pulmonary Fibrosis with traction bronchiectasis
Live each day as if you were living forever, and live each moment as if it were your last.
|
|
Hostess Rise'
Board Administrator
Username: Rise
Post Number: 16251
Registered: 05-2003
| | Posted on Tuesday, June 21, 2011 - 01:46 pm: |
|
Hi Marjolein
I am thinking of you and praying all goes well.
|
Marjolein
Member
Username: Marjolein
Post Number: 224
Registered: 08-2007
| | Posted on Monday, June 27, 2011 - 01:42 pm: |
|
No results... I went home on Friday and they called me today just past 6pm.
They couldn't get anything from the biopsies they did. We knew it was a very difficult spot to reach with a bronch but because a bronch is not as invasive we still tried that. They did come very close, as they did find active cells. But probably cells that just had a reaction to what was going on very closeby.
It can still be everything, from any kind of infection to something malignant.
They will now do a punction, go inside my lung, from the outside. Soon as possible.
Marjolein
27y/o, from the Netherlands
Cystic Fibrosis, Dxed at birth
Bilateral lungtransplant, August 2006
Dxed with emphysema, May 2007
http://marjoleins65roses.web-log.nl |
|
Hostess Rise'
Board Administrator
Username: Rise
Post Number: 16290
Registered: 05-2003
| | Posted on Wednesday, June 29, 2011 - 06:21 pm: |
|
Hi Marjolein
I am sorry you are going through all of this. You are in my prayers daily.
xoxo
Rise'
|
vajohn
Member
Username: Jfarel
Post Number: 287
Registered: 02-2008
| | Posted on Friday, July 01, 2011 - 07:23 pm: |
|
I'm sorry as well Marjolein. Definitely be praying for a good resolution. Stay positive
30 years old with Cystic Fibrosis
Bilateral Lung Transplant INOVA Fairfax hospital (June 23, 2010)
|
|
Marjolein
Member
Username: Marjolein
Post Number: 228
Registered: 08-2007
| | Posted on Friday, July 08, 2011 - 01:27 am: |
|
I got the results yesterday.
It's not good, not good at all.
I have lung cancer. It is very difficult to treat. But I can do this, I can.
Will hear the final treatment options for now, on Monday.
Marjolein
27y/o, from the Netherlands
Cystic Fibrosis, Dxed at birth
Bilateral lungtransplant, August 2006
Dxed with emphysema, May 2007
http://marjoleins65roses.web-log.nl |
|
Brian
Member
Username: Belizeangaijin
Post Number: 34
Registered: 06-2007
| | Posted on Friday, July 08, 2011 - 01:34 am: |
|
Well crap. I'm sorry to hear that Marjolein. Good luck and keep your chin up. Attitude is half the battle. I and my wife will be thinking of you.
Brian |
Jack R
Forum Leader
Username: Jack_r
Post Number: 493
Registered: 08-2010
| | Posted on Friday, July 08, 2011 - 03:24 am: |
|
Hello Marjolein,
i'm regret that you received such news. Draw on your exceptional strength and character for this battle and remember how many battles you have won over these many years.
Please stay with us here and you are in our thoughts and prayers.
Cardiac history going back to 1993. Heart Transplant received in Oct. 2004. Interesting first year and have been very physically active ever since. I currently am pro-active with the SE PA. Gift of Life and a member of Johns Hopkins patient administered Heart Transplant Foundation.
Exercise - look around you and don't tell me you can't -Blog |
|
Hostess Rise'
Board Administrator
Username: Rise
Post Number: 16320
Registered: 05-2003
| | Posted on Friday, July 08, 2011 - 04:38 am: |
|
Dear Marjolein
I was thinking and praying for you last night and hoping that we would hear from you. I am very sorry to hear this news. What are the plans to treat you? Are they going to further reduce your drugs?
Please stay in touch with us often.
Sending you much love and support
Rise'
CF- dx at 2yrs. 2nd double lung tx-05
Debra Fertel MD- Jackson Memorial
Si Pham MD, Professor of Surgery
Anas Hadeh MD, Cleveland Clinic, Weston
My Photos on Transplant Friends
|
|
ajs
Forum Leader
Username: Ajs
Post Number: 598
Registered: 03-2008
| | Posted on Friday, July 08, 2011 - 09:24 am: |
|
So sorry to hear this, Marjolein. Is it possible for them to give you a second set of lungs, as it was their fault to give you the ones with emphysema? Has that even been mentioned?
Double-Lung transplant at Duke on 10/27/08
Pulmonary Fibrosis with traction bronchiectasis
Live each day as if you were living forever, and live each moment as if it were your last.
|
|
Marjolein
Member
Username: Marjolein
Post Number: 230
Registered: 08-2007
| | Posted on Friday, July 08, 2011 - 10:26 am: |
|
Thank you all for the message. They really do me good.
Rise'
They will most likely reduce anti rejection meds.
Do surgery to remove the upper right lobe where the bigger tumor is (2.5/3cm). There is a smaller tumor (1cm) in the lower right lobe. They will most likely treat that with radiation and do chemo therapy.
And when I am healed from the surgery give me something to slow the growth of the tumor. But they can't start that too early as that will slow down the healing.
This is the first plan. They are having talks today, and will have another on Monday, with a bigger team. Thoracic surgeons, oncologists.
They will call me Monday evening. That is when I will know for sure.
Marjolein
27y/o, from the Netherlands
Cystic Fibrosis, Dxed at birth
Bilateral lungtransplant, August 2006
Dxed with emphysema, May 2007
http://marjoleins65roses.web-log.nl |
|
Marjolein
Member
Username: Marjolein
Post Number: 231
Registered: 08-2007
| | Posted on Friday, July 08, 2011 - 10:37 am: |
|
Ajs, yes that has been mentioned, but it is not possible.
It happens sometimes, that recipients get cancer in their new lungs, all over the world. My team has experienced it a few times and placed people on the tx list again. Every time the cancer was back within a year, and was spread throughout the body in no-time...
Also, I don't believe it is my teams fault I have emphysema. They truly didn't know. All they know is, there was a chance, that my donor had smoked in her life but not in previous years. All tests done at the time of tx were ok, nothing to see in a bronch, x-ray, bloodgasses, all good.
There is a huge donor shortage in the Netherlands. So teams have to take the chance and take lungs from people who have smoked. They need to. They needed to with me, I waited almost 5 years and most likely wouldn't have lived for another 3 months.
My docs gave me my new lungs, gave me a new chance to live. That is what they did. And here I am. Almost 5 years later. Living. Can't do everything. But so, so much more. And that is what it is all about. The quality of life, and that is much much better
Marjolein
27y/o, from the Netherlands
Cystic Fibrosis, Dxed at birth
Bilateral lungtransplant, August 2006
Dxed with emphysema, May 2007
http://marjoleins65roses.web-log.nl |
|
Lee
Member
Username: Lee
Post Number: 21
Registered: 02-2011
| | Posted on Friday, July 08, 2011 - 10:44 am: |
|
I am so sorry you are going thru this. It is a heavy load but you are a fighter and you can do this. I will be praying for you.
copd with severe bronchitis-13 yrs
need lung transplant |
|
ajs
Forum Leader
Username: Ajs
Post Number: 600
Registered: 03-2008
| | Posted on Friday, July 08, 2011 - 10:56 am: |
|
I understand. You never know what might happen on this journey, you just plow ahead with as good an attitude as you can. Keep your head up and win another battle. You can do it!
Double-Lung transplant at Duke on 10/27/08
Pulmonary Fibrosis with traction bronchiectasis
Live each day as if you were living forever, and live each moment as if it were your last.
|
|
Tamara
Member
Username: Heppygirl
Post Number: 20
Registered: 05-2011
| | Posted on Friday, July 08, 2011 - 10:58 am: |
|
@Marjolein
That's why explained to people I told. You have lived 5 years extra (en better qualtity) than before, that was a great gift. But it just sucks that you have to go through all of this, as if Emphysema wasn't enough 
Tamara
24y/o, from the Netherlands
Cystic Fibrosis, Dxed at birth
Bilateral lungtransplant, September 2010
http://muffinmeetsworld.blogspot.com
Anywhoo... |
|
LynnJ
Member
Username: Lynnj
Post Number: 53
Registered: 09-2010
| | Posted on Saturday, July 09, 2011 - 07:58 am: |
|
Marjolein,
I am so sorry. I will pray for you. I don't post often but I read all posts.
Lynn J
hubby with double lung TX 10/2/10 |
|
Marjolein
Member
Username: Marjolein
Post Number: 233
Registered: 08-2007
| | Posted on Saturday, July 09, 2011 - 10:59 am: |
|
Thanks everyone
Messages really mean a lot right now
Marjolein
27y/o, from the Netherlands
Cystic Fibrosis, Dxed at birth
Bilateral lungtransplant, August 2006
Dxed with emphysema, May 2007
http://marjoleins65roses.web-log.nl |
|
Hostess Rise'
Board Administrator
Username: Rise
Post Number: 16330
Registered: 05-2003
| | Posted on Saturday, July 09, 2011 - 11:40 am: |
|
Hi Marjolein
I was going to ask you if you wanted my help in placing up your beautiful picture here and there you have done it. Are you a mind reader LOL
You look a little like Cheryl Tiegs (model) but I think you are much prettier.
You have a lot to live for!!!
CF- dx at 2yrs. 2nd double lung tx-05
Debra Fertel MD- Jackson Memorial
Si Pham MD, Professor of Surgery
Anas Hadeh MD, Cleveland Clinic, Weston
My Photos on Transplant Friends
|
|
Dewwd
Member
Username: Dewwd
Post Number: 91
Registered: 02-2005
| | Posted on Saturday, July 09, 2011 - 09:43 pm: |
|
Marjolein I commend you for your strength in facing this challenge.I am sure it is the last thing that you expected. Like others have mentioned before and I am sure you already know, you are a fighter. I am sure growing up with CF all you know is fighting for your life. This is just another challenge for you and you can face it . You are very strong to have made it thus far in life and I am sure you will fight this like no other person can. Be strong and know that there are many of us praying for you. Be strong!
Heart Transplant
Transplanted 2/20/2003 UCSD Medical Center
Currently at Tampa General Hospital |
|
Marjolein
Member
Username: Marjolein
Post Number: 234
Registered: 08-2007
| | Posted on Tuesday, July 12, 2011 - 10:26 am: |
|
My doc called me yesterday evening.
For now, the plan is only surgery.
But we won't know if chemo is necessary till after the surgery.
They will remove the upper right lobe where the larger tumor is and part of the lower right lobe where a smaller one is.
They hope to be able to remove enough that chemo will not be needed. But we will not know for sure till after surgery.
Chemo is a huge risk post transplant. Leaving you with very very little immune system and very susceptible to infections. That might be bad. With a low lungfunction and emphysema.
Before the surgery they will do a stamina test to really see what my lungs can handle.
And they will also do an MRI of my head to check for metastasis. They have done a PETscan and don't see any on that. But the brain is not fully visible on a PETscan. To know for sure they need to do an MRI.
Of course those results could change the plan.
The tests and surgery will be somewhere in the coming weeks, but don't have to be very quickly.
I think I will keep this thread to update you all on what is happening.
Rise', thank you! I think I did read your mind ;-)
Marjolein
27y/o, from the Netherlands
Cystic Fibrosis, Dxed at birth
Bilateral lungtransplant, August 2006
Dxed with emphysema, May 2007
http://marjoleins65roses.web-log.nl |
|
Hostess Rise'
Board Administrator
Username: Rise
Post Number: 16341
Registered: 05-2003
| | Posted on Wednesday, July 13, 2011 - 12:20 pm: |
|
Hi Marjolein,
You are in my thoughts and prayers daily. Thank you for updating us.
Even though we are a million miles away we can all be connected close to our hearts through spirit.
I must say that this is true for me. Whenever I think about someone who I have not heard from on this site, they often appear within a few days (call me strange.
"Keep seeing yourself as the beautiful woman that you are."
CF- dx at 2yrs. 2nd double lung tx-05
Debra Fertel MD- Jackson Memorial
Si Pham MD, Professor of Surgery
Anas Hadeh MD, Cleveland Clinic, Weston
My Photos on Transplant Friends
|
|
laura
Member
Username: Lovemymom
Post Number: 4
Registered: 06-2011
| | Posted on Wednesday, July 13, 2011 - 03:00 pm: |
|
I just wanted to send you my thoughts and prayers. You truly are an inspiration to all! All my best to you always! |
Dewwd
Member
Username: Dewwd
Post Number: 92
Registered: 02-2005
| | Posted on Wednesday, July 13, 2011 - 06:28 pm: |
|
I will pray for you and I am sure many others here will also. Stay strong!
Heart Transplant
Transplanted 2/20/2003 UCSD Medical Center
Currently at Tampa General Hospital |
|
