| Author |
Message |
conniez
Member
Username: Zeracen40
Post Number: 2
Registered: 02-2011
| | Posted on Tuesday, April 05, 2011 - 10:11 pm: | 
|
Hi everyone, My name is Connie and on June 22nd of 2010 I started having heart attacks. Within three weeks I had three that left me on an LVAD that pumps the left side of my heart and left only 10% of right side working. I started all of this in Lake Charles, La. and was brought to New Orleans Tulane Hospital. Three hours away from each other and the difference in technology is amazing. New Orleans saved my life. A little background on me. I am 42 years old, wt. 152, 5'5" and have rheumatoid arthritis diagnosed at age 33, no other health issues. I have been on the transplant list in New Orleans since September 2010. I have tried the IVIG and ended up with aseptic menigitis. Have done the plasma pherisis three times and my blood pressure has bottomed out all three times and have yet to finish one treatment. I have done chemotherapy treatments and nothing seems to lower my immune system. On my last visit my Dr.s told my that they no longer think I am a good candidate for transplant. I am having a very hard time with this. I know that I can live 5 to 6 years with the VAD and it could be replaced which would be another 5 or 6 years. I don't know why this news has depressed me seriously. I knew they were having trouble getting my body to cooperate. I wanted a new heart but I wanted to be healthy and not sickly. I have received a miracle and am so grateful for the extra time with my children. I guess I was hoping for another one. If any of you have had trouble or have any suggestions about lowering my immune I would love to hear them. God Bless. |
Rocket Heart
Member
Username: Rocketheart583
Post Number: 499
Registered: 08-2007
| | Posted on Wednesday, April 06, 2011 - 08:55 am: |
|
Hi Connie - I sure don't have any answers for you, as a matter of fact I had to do some research to see what IVIG is - it sounds like you have a compromised immune system for sure.
I was also on an LVAD until my transplant and it really helped get me back to a healthy state for my transplant operation. During the time of my VAD there was no attempt at lowering my immune system - that doesn't generally occur until after transplant with immunosuppresent drugs such as Prograf, Cyclosporine, and Prednisone etc. just to name a few.
Bottom line here is that I don't understand why they are trying to lower your immune system before transplant?
Best of luck to you. God Bless
Rocket Heart
Tom Emahiser
Waterville, Oh
Heart Failure
Heart Txplt 1/26/05 University of Michigan |
|
Russ
Member
Username: Rjwitte
Post Number: 81
Registered: 06-2009
| | Posted on Wednesday, April 06, 2011 - 10:19 am: |
|
Connie,
My goodness you've been through a lot so far! If I understand you correctly, you are having issues with your PRA (Panel Reactive Antigen) levels being too high for the doctors to feel comfortable with a transplant. The most common treatment is of course plasma pherisis which you're not tolerating. I'm so sorry ... I may be wrong, but I believe in most cases time should clear up the PRA's. They are most often elevated from previous blood transfusions, and I assume you've had quite a few due to your surgeries. It is common for the PRA levels to come down over time as your body replaces your blood. I would definitely get more clarity from your doctors, they may have been saying that UNTIL your antigens drop they can't recommend you for a transplant.
I too was on an LVAD (absolutely amazing technology!!!) and initially my PRA's were elevated, but after about 5 months (in my case) they could transplant me. Please don't lose hope, another miracle could happen. I know this seems like a very long time to wait, hang in there.
My prayers are with you.
Russ - Heart Txp, 1-1-1999
Univ. of Michigan |
|
Rocket Heart
Member
Username: Rocketheart583
Post Number: 500
Registered: 08-2007
| | Posted on Wednesday, April 06, 2011 - 12:45 pm: |
|
Thanks for the answer Russ - I was lost!!
Rocket Heart
Tom Emahiser
Waterville, Oh
Heart Failure
Heart Txplt 1/26/05 University of Michigan |
|
ajs
Forum Leader
Username: Ajs
Post Number: 533
Registered: 03-2008
| | Posted on Wednesday, April 06, 2011 - 04:40 pm: |
|
Hi Connie,
Don't know much about hearts (other than how big some of our board member's are!), but I would ask about Rituxan. After transplant, I developed one pesky donor-specific antigen they wanted to get rid of. It was a low amount, but you are better off with none. So I've had two courses of Rituxan in 2 1/2 years. Both times it got rid of all antibodies, even though it cropped back up once. Best of luck, and glad Russ could give you some hope.
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.
|
|
conniez
Member
Username: Zeracen40
Post Number: 3
Registered: 02-2011
| | Posted on Wednesday, April 06, 2011 - 08:47 pm: |
|
Hi Everyone,
My dr.s seem to think the rheumatoid arthritis is the problem. It's an autoimmune disease which basicly means your immune system is attacking not only the bad but good cells. My PRA was at 82% Feb/Mar after 3 treatments of plasma pherisis ( was supposed to do 5 but couldn't tolerate) and 4 weeks of chemo my PRA as of Mar 26th was at 84%. Went up!!! Dr.s say they would like it around 20%. They say with my immune system so high it would eat a new heart up. Ajs I will ask about the Rituxan. Rocketheart I can't believe I stumped you. You and Russ are very knowledgable and I enjoy reading your post. There are some really, really, really smart dr.s working hard everyday and there is no telling what they'll come up with next. |
Rocket Heart
Member
Username: Rocketheart583
Post Number: 501
Registered: 08-2007
| | Posted on Thursday, April 07, 2011 - 09:00 am: |
|
Connie - wow thanks for the compliment but you give me way too much credit....lol. Russ was the one the with the answers on this one. I try not to post unless I have a correct information - I hadn't even heard of what you fighting.
So my motto of "learn something new every day" held true in your case.
Will keep you in my prayers. Keep us posted.
God Bless
Tom
Rocket Heart
Tom Emahiser
Waterville, Oh
Heart Failure
Heart Txplt 1/26/05 University of Michigan |
|
Hostess Meagan
Forum Leader
Username: Newheart14
Post Number: 1837
Registered: 01-2009
| | Posted on Thursday, April 07, 2011 - 09:10 am: |
|
Hi Connie,
I don't know anything about this but I just wanted to wish you the best and hope things work out for you. You have been through a lot.
Meagan
Forum Leader
Heart-Liver Transplant - February 14, 2008
Toronto General Hospital, Toronto, Canada
Idiopathic dilated cardiomyopathy 1991 and CHF
- Most of the important things in the world have been accomplished by people who have kept trying when there seemed to be no hope at all - Dale Carnegie
- Bumps in the road can sometimes be mountains, so I have learned to climb mountains - Meagan
Meagan's Blog |
|
Russ
Member
Username: Rjwitte
Post Number: 82
Registered: 06-2009
| | Posted on Thursday, April 07, 2011 - 09:16 am: |
|
Hi Connie,
Pardon my 'french' but that sucks! I've met a nurse from Tulane and was very impressed, so I'm sure you're in great hands ... I'm still praying for a miracle. It's perfectly normal to be upset and depressed with news like this ...very tough to deal with and so very unfair! I do encourage you to treasure each and every moment. The memories you make with your family now are very important.
I remember how good I felt physically while on the LVAD, I wasn't completely sure I wanted a transplant, was afraid it would lower my quality of life! If it's giving you renewed energy take advantage of that where ever you can. I was up helping other patients, visiting with anyone that felt lonely and doing little things for the staff ... in other words helping out where I could. It also helped in getting my mind off of the situation. I'm sure you're already doing these things, keep it up!
Please let us know how things are going ... I think you're going to be teaching us and I'm sure the doctors will figure out something.
Russ - Heart Txp, 1-1-1999
Univ. of Michigan |
|
LynnJ
Member
Username: Lynnj
Post Number: 46
Registered: 09-2010
| | Posted on Saturday, April 09, 2011 - 08:36 am: |
|
Connie,
Why don't you get a second opinion with Ochsner in New Orleans? Good luck to you.
Lynn J
hubby with double lung TX 10/2/10 |
|
