Transplants

This group is for people interested in transplants. Join the discussion! Post your question, share your story, or just say hello and introduce yourself.

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lindami

Thu, Apr 21 at 5:49pm CDT by @lindami in Transplants · View  

how many hand transplants have been performed at mayo

lindami

lindami responded 5 days ago · View

I am not sure about the hip, I am going to set up an appointment for an x-ray to find out how it is progressing. Actually I use a stylus in a cuff, and then I employ the old hunt and peck system.

colleenyoung

Colleen Young | Connect Director responded 4 days ago · View

LOL, I have to admit I had a bit of a chuckle from the "hunt and peck" phrase. I got an immediate visual of a chicken tapping a smartphone. Do keep us posted on the hip.

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buttons

Fri, Apr 22 at 3:52pm CDT by @buttons in Transplants · View  

Lung transplant possible for a person with dermatomyositis with ILD?

I have dermatomyositis with ILD for over 13 years. Since dermatomyositis is an autoimmune disease could a patient like me be able to have a transplant or would my body attack the new lung also?

Edited: 04/22/2016 @ 4:38pm

buttons

buttons responded Fri, Apr 22 at 6:56pm CDT · View

Hi Colleen, none of my doctors have said anything at this time. I was checking out my options for who knows when I might need a transplant. Dermatomyositis is a disease that's somedays I believe has a mind of its own.

colleenyoung

Colleen Young | Connect Director responded 4 days ago · View

Good morning Buttons. Wise to do your research now. We put your question to Dr. David B. Erasmus, pulmonologist and transplant specialist at Mayo Clinic, Florida. He said: "Patients with dermatomyositis can be evaluated for lung transplantation. Some of the other organ involvements may pose problems, especially if there is significant muscle weakness, but each individual case should be assessed on its own merits. All lung transplant recipients require lifelong immunosuppression, but the risk of [...]

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bink

Oct 26, 2013 by @bink in Transplants · View  

I am now ACTIVE on UNOS for a liver transplant

Hi All ,
I have been accepted and am now ACTIVE on UNOS as of Thursday for a liver transplant ! and wow i thought my feelings and emotions were out of wack before now they are running rampid ! i was told to get caught up on my sleep and as much rest as possible but i am finding it hard to do 🙁 i cant turn off my mind and i am afraid i will miss my calling . Anyone else been through a liver transplant at Mayo in Jacksonville ??

Edited: 04/06/2016 @ 3:57pm

coastalgirl

coastalgirl responded Wed, Apr 6 at 2:00pm CDT · View

Hi There. I was fortunate enough to have a kidney transplant at Mayo in Jacksonville, FL on 6-1-10. I had a live donor so I was lucky enough to have everything scheduled and didn't have to wait on a phone call so I can't imagine the anticipation you must be going through. I can tell you though that Mayo is phenomenal in all things that they do and completely has this process down to an [...]

Rosemary A likes this
colleenyoung

Colleen Young | Connect Director responded Wed, Apr 6 at 3:59pm CDT · View

Hi @coastalgirl and welcome to Connect. I moved this discussion thread to the Transplants group because I think people looking for first-hand transplant experiences will look there first. So amazing to have tips from someone who has "been there". Thank you.

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deirdosh

Sun, Apr 3 at 10:48am CDT by @deirdosh in Transplants · View  

Planning for a Mayo kidney transplant. How long is the wait time?

how long wait time is usual for a Mayo kidney transplant after being placed on the list? I am on the list now, and have been for 18 months. The main concern I have is finding temporary housing on "immediate" notice when I am notified that it's time. Is there any way to get this set up in advance? I was able to find possibilities during the screening process, but the immediate nature of this is what concerns me. Maybe members might have suggestions. thank you.

Edited: 04/03/2016 @ 12:33pm

deirdosh

deirdosh responded Tue, Apr 5 at 2:51am CDT · View

Thank you for your reply. I will take your suggestion and start getting the housing situation resolved. I have been on the list for 18 months now, so I need to get everything in order quickly.

deirdosh

deirdosh responded Tue, Apr 5 at 2:53am CDT · View

thank you, Lauren, for your reply. I’m sure glad I found the Mayo Connect forum, and will start checking the info from several responses I have received.

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linda59

Wed, Mar 23 at 4:06am CDT by @linda59 in Transplants · View  

Life expectancy after heart transplant for GCM

Hello there, I'm new to the site. Can you help? I'd like to know "what's the longest time a GCM heart transplant patient has lived for, post op? I know each case is unique.. Etc etc but I really would appreciate an answer to this question. Thank you.

Edited: 03/23/2016 @ 9:02am

rosemarya

Rosemary A responded Fri, Mar 25 at 11:50am CDT · View

Hi Linda, I am replying as a mother, and as a transplant (liver/kidney) recipient. While I do not have any experience with your son's condition or heart transplant, I hope that I might be able to share some insight gained by my experience. I understand the need to search and search for statistics etc. I do the same thing. But, as I made my self accept early on - those are numbers, not people. It [...]

rosemarya

Rosemary A responded Fri, Mar 25 at 12:26pm CDT · View

As far as moving; is there someone near/with your son to provide support and care if needed. And is he comfortable with that level of support? It sounds like you are in a situation where a move is possible, if necessary. How does he feel about it? My personal experience is that when I catch a cold, get a sprain, sinus,etc. is that I take longer to get better. Sometimes a 'routine' ER visit leads [...]

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uneeq1

Tue, Mar 22 at 1:06pm CDT by @uneeq1 in Transplants · View  

Living Kidney Donor Advice

Living Kidney Donor Advice

Hello-
Is anyone there able to offer advice for a living kidney donor? I am in the
process of being approved to donate and I am having some unsettling
feelings about the recipient's choice of hospitals. She is a patient at
Lutheran Hospital in Fort Wayne, IN. I have never had anything done at this
hospital, but the facility seems to be a bit older than some. I looked at
their rate of success and it was only 84% compared to a national average of
over 90%. The transplant coordinator told me that they had a review team
come in and they changed some of their practices and that the number should
go up next time they publish. Should I be concerned about the facility? I
have a family member who had her transplants done at Mayo, so my confidence
is high for Mayo Clinic.
Thanks so much!

gregorytremblay

Gregory Tremblay responded Tue, Mar 22 at 1:33pm CDT · View

It was Anon. Trillium Ontario chose the location.

uneeq1

Lisa S responded Wed, Mar 23 at 8:26am CDT · View

I spoke to her a bit about the hospital choice last fall when we first talked about me donating. She is someone I know from being neighbors at the RV park we stay at in the summer, so it isn't anonymous. There are 500 people in my area waiting for a kidney and I know in larger metropolitan areas the number is in the thousands. I hope by donating it will show people that they [...]

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gregorytremblay

Apr 11, 2015 by @gregorytremblay in Transplants · View  

I am an Anon Kidney Donor - wonderful decision

I am an Anon Kidney Donor, and will offer advise to verify that I made a wonderful decision to donate.

Edited: 01/13/2016 @ 9:45am

colleenyoung

Colleen Young | Connect Director responded Wed, Jan 13 at 5:22pm CDT · View

Good for you! That's one of best "why I quit smoking" stories I've heard yet. When do you donate your kidney and how long was the recovery period?

Edited: 03/22/2016 @ 1:18pm

gregorytremblay

Gregory Tremblay responded Wed, Jan 13 at 5:32pm CDT · View

Confidential on where and when. Sorry. I have to guess as to the recovery time as I am retired and required regular pain medications for years, so I don't have actual dates to refer to. To return to the career I had before my accident, I think about 2 months. That is a long estimate, as I needed to be very agile in that job. If it helps, I was fine being alone after returning [...]

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jenrico

Sun, Mar 13 at 12:06pm CDT by @jenrico in Transplants · View  

Diagnosed with AL Amyloidosis. What can I expect?

Diagnosed with AL Amyloidosis. Would like to hear from someone about what to expect. Have not started treatment yet.

Edited: 03/13/2016 @ 7:45pm

tmousetis

tmousetis responded Tue, Mar 15 at 10:35pm CDT · View

Do not worry Jenrico. Your symptoms are common for AL but will improve the more you get chemo. As far as not qualifying for transplant, many folks do not have a transplant and the newer drugs seem to be as good as getting a transplant. It is important to eat prior to chemo and make sure you training yourself to drink a lot of water. You want to be well hydrated on chemo. I do [...]

Edited: 03/18/2016 @ 7:26am

jenrico

jenrico responded Fri, Mar 18 at 6:44am CDT · View

I am fortunate to live an hour away from Rochester. mn. Am having the attention of great Amyloid specialists.

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60121951

Sun, Mar 13 at 8:48pm CDT by @60121951 in Transplants · View  

How long does it take a kidney transplant recipiant to recooperate?

wmoser2613

Wmoser2613 responded Mon, Mar 14 at 8:15am CDT · View

Y had both a liver and kidney transplant in Oct. 2012. I am doing very well. How about you?

Edited: 03/14/2016 @ 8:38am

rosemarya

Rosemary A responded Mon, Mar 14 at 11:50am CDT · View

I received liver and kidney in April 2009. Organs functioned immediately. No more dialysis after transplant. After months of inactivity, I needed to slowly regain my strength and stamina by exercise, mostly walking. I was able to do some hiking in Great Smoky Mts in October. I continue to do well. Getting ready to celebrate 7 years. I hope this helps you.

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shawnbishop

Dec 9, 2015 by @shawnbishop in Transplants · View  

Bone Marrow Failure and Bone Marrow Transplantation

On Wednesday, Jan. 20 at Noon CT, Mayo Clinic will host an interactive webinar on bone marrow failure and bone marrow transplantation for adult and pediatric patients. Shakila Khan, M.D., Chair of Pediatric Hematology-Oncology and Director of the Pediatric Bone Marrow Transplant Program, Vilmarie Rodriguez, M.D., Associate Director of the Pediatric Bone Marrow Transplant Program, and Mrinal Patnaik, M.B.B.S., Assistant Professor of Medicine and Oncology, will discuss bone marrow failure symptoms, diagnosis, and treatment options, including bone marrow transplantation. A live question and answer session will follow the presentation. Sign up for the webinar now to receive email reminders and post questions for the doctors.

Register Here

Would you like to:

Learn more about bone marrow transplant

Schedule your appointment

Edited: 01/29/2016 @ 8:37am

LaurenSpiceland

Lauren Spiceland responded Fri, Jan 29 at 8:49am CDT · View

Hello, here is a response from our physicians: We are still learning about telomeres. They are important in cancer, aging, response to drugs, etc. Shortened telomeres are on the chromosomes, so they are technically in the whole body. Patients with aplastic anemia don’t respond well to immunosuppression and are more sensitive to transplant conditioning, but do fine with reduced-intensity conditioning.

LaurenSpiceland

Lauren Spiceland responded Wed, Feb 17 at 9:57am CDT · View

Autologous stem cell transplants can produce long term remissions in follicular lymphoma, better if done earlier in the course of their disease. This type of transplant is not curative for most patients. Allogeneic stem cell transplants can be curative for some patients but are more risky and in general are recommended for younger patients.

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charba1

Jul 23, 2011 by @charba1 in Transplants · View  

Pancreas and Kidney transplant - share experiences

Does anyone know 

Edited: 01/29/2016 @ 8:47am

sandras

sandras responded Mon, Feb 1 at 12:12am CDT · View

Oh so sorry. To. Here. That

sandras

sandras responded Tue, Feb 2 at 2:10pm CDT · View

Hi, I waited for a year and also had many calls. It is frustrating but hang in there! I personally know what is is like to wait.

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bobbutler

Jan 12, 2015 by @bobbutler in Transplants · View  

How do I get on multiple transplant lists for a liver?

I have been added to the transplant list for a liver at Yale new haven. I understand I can get on other list in other parts of the country. How do I go about this?

Edited: 01/13/2016 @ 9:51am

LaurenSpiceland

Lauren Spiceland responded Tue, Jan 19 at 11:37am CDT · View

Hey Bob, here are a couple links that explain organ allocation and multiple listing really well: https://www.unos.org/wp-content/uploads/unos/Multiple_Listing.pdf and https://optn.transplant.hrsa.gov/learn/about-transplantation/how-organ-allocation-works/. You can view the average waiting times for different regions here: https://optn.transplant.hrsa.gov/converge/latestData/stateData.asp?type=region. The average preservation time for a liver is 8-12 hours, so that could make it difficult to receive a liver from a transplant center that is a great distance from your home. To be added to the list at another transplant center, you have [...]

sandras

sandras responded Sun, Jan 31 at 10:41pm CDT · View

Agreed!

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er1nel1zabeth

Jan 20, 2015 by @er1nel1zabeth in Transplants · View  

Why doesn't Mayo in FL currently perform living donor liver transplant?

Why doesn't FL currently perform living donor liver transplant and any plans on horizon to start?

Edited: 01/13/2016 @ 9:46am

LaurenSpiceland

Lauren Spiceland responded Fri, Jan 29 at 3:15pm CDT · View

While transplant from a living donor is an excellent alternative to a deceased donor, each procedure comes with certain risks: http://www.mayoclinic.org/tests-procedures/liver-transplant/basics/risks/prc-20014076. The risks of living donation should be weighed against the risk of waiting for a matching organ from a deceased donor. Mayo Clinic Florida is in a region of the country that is fortunate to have a higher rate of liver grafts from deceased donors compared to other regions of the country. As a [...]

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nancyligon

Jun 30, 2015 by @nancyligon in Transplants · View  

I was Dxed with IPF 2014.

Hello All. My name is Nancy. I was Dxed with IPF 2014. I know am going to go thru the process of being placed on transplant list . I am hoping I can get advice from the get go on this .Afraid and stupid and otherwise in good health ( end stage lung disease in right lung) 61... Help. What can I expect?

Edited: 01/11/2016 @ 8:11am

colleenyoung

Colleen Young | Connect Director responded Wed, Jan 13 at 9:37am CDT · View

Hi @nancyligon, I'm the new Community Director on Connect and am catching up on some conversations. If you would like to connect with other people with pulmonary fibrosis meet @mairi and others on this discussion thread: http://connect.mayoclinic.org/discussion/pulmonary-fibrosis/ Are you on the transplant list? How are you doing?

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magrand48

Sep 8, 2015 by @magrand48 in Transplants · View  

I had a Liver transplant 5 years ago

I have had a had a Liver transplant 5 years ago and now need a kidney transplant. I have no, repeat no energy. Should I expect an energy boost from the kidney transplant? Anyone else have both transplants?

Edited: 01/11/2016 @ 8:10am

colleenyoung

Colleen Young | Connect Director responded Wed, Jan 13 at 9:24am CDT · View

Hi @magrand48, Connect members @rosemarya and @wmoser2613 had both a liver and kidner transplant. You can connect with them on this thread http://connect.mayoclinic.org/discussion/liver-transplant-for-primary-biliary-cirrhosis-pbc/ How are you doing today? Are you waiting for a kidney transplant? Colleen Young Connect Community Director

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kariulrich

Aug 26, 2011 by @kariulrich in Transplants · View  

Liver Transplant for Primary biliary cirrhosis (PBC)

Would like to hear from anyone who has been through a liver transplant. Both donor and recipient. Thank you- Kari Ulrich

surfah00

surfah00 responded Oct 16, 2013 · View

My mother had a liver transplant in 1996 at VANDERBILT hospital in Tennessee.

deeann

DeeAnn responded Sep 12, 2015 · View

How tough was it on your son and how long was his recovery? What state?

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user_chcbc919c

Sat, Jan 9 at 2:41pm CDT by @user_chcbc919c in Transplants · View  

On hold for liver transplant

Am at Barnes on hold for liver.supp to be#/1 but not hearing a word. 

Edited: 01/13/2016 @ 8:31am

user_chcbc919c

user_chcbc919c responded Mon, Jan 11 at 12:09pm CDT · View

no my son is preparing for liver transplant and he is trying to get over flu but he will need a  liver very soon and his score is 32 and high on the list. He is in barnes but hopefully can acquire a liver any where in U. S. or close enough to transport a liver in time to Barnes. What reccomendations do you have for this case?

Edited: 01/13/2016 @ 8:31am

colleenyoung

Colleen Young | Connect Director responded Wed, Jan 13 at 8:52am CDT · View

It is difficult to watch our children suffer. I hope your son beats the flu soon, and more importantly, gets the call asap for a liver that he and your family are desperately waiting for. My thoughts are with you. It is impossible to comment on specific cases here on this forum. But if you would like to speak to someone at Mayo Clinic in Rochester, Minn, you can contact our liver transplant program at [...]

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shawnbishop

Jun 9, 2015 by @shawnbishop in Transplants · View  

What Patients Need to Know About Hilar Cholangiocarcinoma and Liver Transplant

On Tuesday, Aug. 11 at Noon CT, Mayo Clinic will host an interactive webinar on hilar cholangiocarcinoma (cancer of the bile ducts). Julie Heimbach, MD, Liver Transplant Program Surgical Director, and Sumera Rizvi, MBBS, Gastroenterology and Hepatology Fellow, will discuss hilar cholangiocarcinoma symptoms, diagnosis, and treatment options, including liver transplantation. A live question and answer session will follow the presentation.

Would you like to:

Request An Appointment

Learn More About Bile Duct Cancer

Edited: 08/11/2015 @ 9:23am

liljeanie

liljeanie responded Nov 3, 2015 · View

Should I have an ERCP to see if I have cancer? IMPRESSION: 1. Findings within the liver and biliary tree consistent with patient's history of primary sclerosing cholangitis. There is enhancement and thickening of the biliary tree in the hilar region. Cholangiocarcinoma cannot be excluded. 2. Prominent periportal lymph nodes. DISCUSSION: Abdominal MRCP performed before and after the intravenous administration of 14 mL MultiHance. Comparison is made to CT dated 12/22/2010. Indication is PSC. Imaging [...]

LaurenSpiceland

Lauren Spiceland responded Nov 4, 2015 · View

Our doctors are now longer taking questions from this webinar. You might try posting your question on our Connect transplant or cancer pages: http://connect.mayoclinic.org/group/transplants/ and http://connect.mayoclinic.org/group/cancer/. Someone with a similar experience may have some insight. Or, you can visit this page to learn more about making an appointment at Mayo Clinic: http://www.mayoclinic.org/appointments. Best of luck!

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kelseydm

Jul 28, 2015 by @kelseydm in Transplants · View  

A Minnesota woman, who was the first bone marrow transplant recipient at Mayo Clinic in 1963, returned to Rochester more than five decades after her procedure to visit the doctor who performed the transplant.

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karenmaryanne

Jun 14, 2015 by @karenmaryanne in Transplants · View  

WHAT FOODS ARE TO BE AVOIDED AFTER LIVER TRANSPLANT

kelseydm

Kelsey Mohring | Community Manager responded Jun 15, 2015 · View

Hi Karen! Here is an article about diet and nutrition after a liver transplant: http://www.mayoclinic.org/departments-centers/transplant-center/liver-transplant/living-after/diet-nutrition. Hope this helps!

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linda59

10

Life expectancy after heart transplant for GCM

Latest reply Fri, Mar 25 at 12:26pm CDT by Rosemary A @rosemarya

uneeq1

3

Living Kidney Donor Advice

Latest reply Wed, Mar 23 at 8:26am CDT by Lisa S @uneeq1

jenrico

10

Diagnosed with AL Amyloidosis. What can I expect?

Latest reply Fri, Mar 18 at 6:44am CDT by @jenrico

charba1

20

Pancreas and Kidney transplant - share experiences

Latest reply Tue, Feb 2 at 2:10pm CDT by @sandras

bobbutler

2

How do I get on multiple transplant lists for a liver?

Latest reply Sun, Jan 31 at 10:41pm CDT by @sandras

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