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Robert
Member
Username: Azone
Post Number: 18
Registered: 05-2010
| | Posted on Friday, August 05, 2011 - 03:52 pm: | 
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Just had my 2 yr annual clinic everything was going good till my chest x-ray indicated that there was some spots. After a biopsy the doctor told me I now have Hodgkin Disease. Now I have an appointment with a new doc. in 3 weeks. I was wondering if anyone has had the disease and what is going to happen? On the other side my heart is doing very good. I guess I'm bummed out!
Robert
Heart Transplant 8/1/2009
Stanford Hospital & Clinics
Happy To Be Alive |
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gratefuldeb
Member
Username: Gratefuldeb
Post Number: 153
Registered: 05-2009
| | Posted on Saturday, August 06, 2011 - 06:22 pm: |
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Hi Robert,
Sorry to hear that you received some bad news at your annual. I don't know much about Hodgkin's, but I know you will be in good hands at Stanford. On a positive note, I'm happy that your heart is doing well. I guess we never really know what kind of challenges will confront us as transplant recipients, and sometimes we get hit with news that can set us back on our heels a bit. Take good care of yourself, and let us know how your treatment is going.
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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Holly
Member
Username: Holly
Post Number: 493
Registered: 09-2007
| | Posted on Sunday, August 07, 2011 - 07:13 am: |
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Robert,
Sorry to hear your news. Good thing is it is a very treatable cancer. I know personally 3 people that have been treated and are cancer free. Good luck with the next round of tests. I'm sure you don't want to have to face any of this. But God has made us all very strong people that fight the adversities given us even if we think they are TOTALLY unfair. Know we are here for you. You will be in my prayers.
God Bless
Holly Mulkerin
Medina Ohio
Heart transplant 1/28/09 I have a Happy Heart
Be kind. Remember that everyone you meet is fighting a hard battle. Harry Thompson
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Robert
Member
Username: Azone
Post Number: 19
Registered: 05-2010
| | Posted on Wednesday, November 09, 2011 - 10:54 pm: |
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Ended up in having Posttransplant Lymphoproliferative Disease (PTLD). After having chemo therapy docs say I'm in remission. They want me to have radiation treatment also. They have been fine tuning my Prograf and no more Allomap for now. They want to lower my Prograf to the lowest without having any rejection. So far it's been lower by 30% with no rejection . Back to heart biopsy at clinic every other month for now. So far my heart is in good working condition. Got to say thumbs up for Stanford doctors and staff.
Robert
Heart Transplant 8/1/2009
Stanford Hospital & Clinics
Happy To Be Alive |
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ajs
Forum Leader
Username: Ajs
Post Number: 666
Registered: 03-2008
| | Posted on Thursday, November 10, 2011 - 09:12 am: |
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Robert,
Glad to hear you've stepped over that bump in the road. Let me ask you a question; do you know if you were EBV (Epstein Barr Virus) negative before your transplant? People who are negative are at greater risk for developing PTLD post transplant.
Continued good health to you.
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.
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gratefuldeb
Member
Username: Gratefuldeb
Post Number: 157
Registered: 05-2009
| | Posted on Thursday, November 10, 2011 - 12:21 pm: |
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Hi Robert,
I'm so glad to hear that you are in remission, as I've been thinking about you and wondering how things were going. I'm sure you're not too thrilled about hitting the cath lab for more frequent heart biopsies, but they seem to be doing a better job of getting us in and out more quickly these days- at least that has been my experience over the last year 
All the best with your next round of treatment, and please continue to let us know how you are doing. Have a joyous holiday season. You will be in my thoughts and prayers.
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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