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zoeh
@zoeh

Posts: 1
Joined: Sep 28, 2016

lung transplant

Posted by @zoeh, Oct 13, 2016

I am at the beginnings of investigating the pros and cons of a double transplant. My pulmonary dr and I have been talking about it for the past two years and this years pulmonary function tests showed 29% putting me into state 4 of bronchiectisis. I am on 24 hr oxy/ 3 ltr…always short of breath just getting dressed is exhausting some days. I am 62 have had my disease since infancy and have been pretty healthy and active most of my life. God has blessed me with a full life. Is there anyone who is living with transplanted lungs? How are the inti rejection meds working for you? What was your process like? any input is appreciated

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Colleen Young, Connect Director
@colleenyoung

Posts: 3882
Joined: Jul 23, 2014
Posted by @colleenyoung, Oct 13, 2016

Welcome to Connect @zoeh. We have a few members who have either had a lung transplant or are waiting for transplant. Please meet @muskiemama @inspiration @hlweber1 @pd02 @powderpuf.

We’ve also have a few Live Chats with patients and experts from Mayo Clinic that are archived on the site.
– “Patient & Doctor Chat 15 Years Post Lung Transplant” with Richard Oppelt, the first patient to receive a lung transplant at Mayo Clinic’s Florida campus and his wife and caregiver, Janice Oppelt, and the doctor who did the transplant Cesar Keller, M.D. http://mayocl.in/29W8WAa
– “Interstitial Lung Disease and Lung Transplant: What Patients Need to Know” You can watch it here http://mayocl.in/2eb7DPJ

You can also read this story “Double Lung Transplant Recipient Beats Cystic Fibrosis to Become a Running and Fitness Enthusiast” http://mayocl.in/2b2VvmW

What is your biggest concern of a double transplant?


Rosemary, Volunteer Mentor
@rosemarya

Posts: 1275
Joined: Aug 30, 2011
Posted by @rosemarya, Oct 19, 2016

@zoeh, I am a liver/kidney transplant recipient, so there is not much that I know about lung transplant. I just want to drop by and tell you that I know how confusing this time can be for you.
I see that you and your pulmonologist have been talking about this for the past two years, but have you had the opportunity to discuss it with a transplant specialist? I would encourage you to begin there, with the person ‘at the top’ . He/she is best qualified to answer your questions and concerns in a factual manner. He/she might even be able to connect you with someone who shares a similar case. Remember that everyone is different and responds differently to various treatments.
Wishing you the very best.
Rosemary


Rosemary, Volunteer Mentor
@rosemarya

Posts: 1275
Joined: Aug 30, 2011
Posted by @rosemarya, Sat, Feb 18 6:20pm

@zoeh, I have not seen anything from you for a while and I want you to know that you remain in my thoughts (and prayers). I do know that a lot can happen during the course of time since Oct.
I sincerely hope that you and your pulmonologist have decided on an acceptable plan for you.
Sending you a virtual hug.
Rosemary


dthoodjr
@dthoodjr

Posts: 1
Joined: Mar 09, 2017
Posted by @dthoodjr, Fri, Mar 10 10:22am

I have my initial appointment for lung transplant eval in April. Was told to be prepared for 2 weeks of testing and evaluation. What takes so long?


Terri M., Volunteer Mentor
@windwalker

Posts: 1390
Joined: Nov 18, 2016
Posted by @windwalker, Fri, Mar 10 9:54pm

Hello, my name is Terri. What is yours? I completed my two week eval for a double lung transplant last Dec. 2016. It takes two weeks because they check out every organ to make sure there is no other disease going on in your body; plus to make sure your organs are healthy enough to withstand a major surgery. Some tests are two day processes. You will get MRI’s, CAT Scans, Nuclear testing, Left and/or right heart catheter, lots of lab work, swallow tests, reflux test, lung function tests, social worker visit, psychiatrist chat, mini-seminar about transplants, education class with a pharmacist, meet with the surgeon, etc. Believe me, when dealing with a vital and delicate surgery like lung transplantation; you want them to be as thorough as possible. Best of luck to you,. Please keep us posted about your progress. I recommend joining a physical support group if you can. Being around long time survivors and hearing their stories may give you courage and comfort. It did that for me anyway.


Rosemary, Volunteer Mentor
@rosemarya

Posts: 1275
Joined: Aug 30, 2011
Posted by @rosemarya, Sun, Apr 9 6:25pm

@dthoodjr, I hope that you are doing okay. It is April, so I am guessing that you are either at your appointment or getting ready for it. I send you my thoughts and hopes, for some satisfactory results for placement on the transplant list.

I know that the road to transplant can be confusing and frightening. Remember that you can come here anytime you want. You do not have to be alone. And your family and caregiver also are welcome to come here, too. Anytime.
Rosemary


Rosemary, Volunteer Mentor
@rosemarya

Posts: 1275
Joined: Aug 30, 2011
Posted by @rosemarya, Sat, May 13 3:19pm

@dthoodjr, I hope that you are getting the answers and diagnosis to aid in your treatment.
If you don’t mind me asking, did it take the full 2 weeks that you were prepared for? Other patients ask this same question, perhaps they can benefit from your experience.
Rosemary


Rosemary, Volunteer Mentor
@rosemarya

Posts: 1275
Joined: Aug 30, 2011
Posted by @rosemarya, Fri, Mar 10 12:18pm

@dthoodjr, Hi, My name is Rosemary, I am a liver/kidney transplant recipient. I would like to welcome you to Connect. My first thought is that it might be a scheduling thing. Or it is allowing for diagnosis or treatment for any underlying condition that needs to be treated prior to eligibility.

Here is the Mayo Lung Transplant page that might be helpful. There is some information under Eligibility.

http://www.mayoclinic.org/departments-centers/lung-transplant/home/orc-20211835

@windwalker , Do you have any information about this question about pre-evaluation time to share?
Rosemary


Colleen Young, Connect Director
@colleenyoung

Posts: 3882
Joined: Jul 23, 2014
Posted by @colleenyoung, Fri, Mar 10 5:54pm

Welcome @dthoodjr.
In addition to the links Rosemary provided, you might be interested in these 2 videos on Connect.

1. Michael Womack, LCSW, liver transplant social worker, walks viewers through their first liver transplant evaluation at Mayo Clinic, providing insight on what to expect, what you should bring with you, what you don’t need, and other helpful tips. http://mayocl.in/2dWkEjY
While this is specific to liver transplant, it may help give you a picture of what to expect or questions to ask your coordinator.

2. Patient & Doctor Chat 15 years Post Lung Transplant Cesar Keller, M.D., a transplant physician at Mayo Clinic in Florida, talks with Richard Oppelt, the first patient to receive a lung transplant at Mayo Clinic’s Florida campus and his wife and caregiver, Janice Oppelt. http://mayocl.in/29W8WAa

@dthoodjr, do you have to travel to the transplant center and find accommodation for the 2 weeks?


Terri M., Volunteer Mentor
@windwalker

Posts: 1390
Joined: Nov 18, 2016
Posted by @windwalker, Fri, Mar 10 10:08pm

Hi there Zoeh! I completed my eval for a doub lung transplant 4 months ago. They suspect my bronchiectasis was congenital too. I have been ‘deferred’ for now as I am not bad enough yet to warrent a transplant . I am doing my best to stay healthy, keep a positive attitude, and enjoy my life while I still can. (I am 58). Is there any way you could attend a lung transplant group? The Mayo Clinic in Jax has one. I schedule my dr appts on Tuesdays so that I can pop in and listen to other’s stories. I find it very helpful and to wrap my head around the fact that I may need that surgery some day. Medicine has come a long way and going further still with advancements in the surgery, in the antirejection meds, and in the way post surgeries are handled. Survival rates just keep getting better and better! Best of luck to you, keep us posted on how you are doing. Hugs -Terri M.


Rosemary, Volunteer Mentor
@rosemarya

Posts: 1275
Joined: Aug 30, 2011
Posted by @rosemarya, Sat, Mar 11 7:18am

Good morning, @dthoodjr. I hope that you will have a nice day. You have received some great information, already. And I caution you against being overwhelmed by all of it. There is a lot to absorb, and I know, thru my own journey, that you are already in a most stressful situation. So, it is okay to step away for a bit and then return when you are ready to deal with it.
There is a discussion: Transplant 101: Preparing for Your Journey on this transplant forum that you might find of interest.

https://connect.mayoclinic.org/discussion/transplant-101-preparing-for-your-journey/

Here’s my experience
I had to go thru 2 pre-evaluations at 2 different facilities. And there were some similarities, and some differences. This was due to individual transplant centers’ requirements and also my own health situation at the times involved. My first experience was at my local (45 miles from my home) center. I was scheduled for 2 full days of outpatient testing, and they were scheduled 8 days apart. This was convenient because we could easily drive and my health situation was uncomplicated. But, three months later, complications put me in a serious situation where I needed to be transferred to Mayo Rochester (800 miles away) by plane from the ICU. Now things changed completely for me. After treatment and while recovering, I began the process all over again. In addition to liver pre-eval, I needed kidney pre-eval, too. Many tests were done at the end of my hospital stay, and some were scheduled after my release as outpatient. I guess what I want to say is that each of us might have or need different set of tests in addition to the routine pre-evaluation requirements for eligibility.
There were also no support groups at my first center, although I was routinely asked if I would like to meet someone to talk to.

If your schedule is questionable to you, you can always call your transplant center and ask them to help you out and answer your questions.

I welcome you to come back with any questions or concerns about your journey. We are also here if you just want to chat. You are not alone.
Rosemary


Tim
@timfair

Posts: 1
Joined: Sep 11, 2015
Posted by @timfair, Tue, Mar 14 1:44pm

@zoeh I received a double ling transplant at Mayo Clinic in July 2016. The eval process is long but thorough as others have stated. The transplant centers are very cautious and want the best outcome for you they can accomplish. I am not having any issues with the anti rejection medications. The Drs. keep adjusting them post transplant until they find the right balance. 81/2 months out from transplant and they just adjusted my prednisone again yesterday.

My journey started with a diagnosis of Idiopathic Pulmonary Fibrous in April 2013 and being placed on the transplant list in Dec 2014. The battery of tests before being placed on the list took 6 days. It seemed like a lot at the time but it went pretty fast and was mostly painless, but tiring. My health remained pretty good and I continued to work until May of 2016 when my oxygen needs got to high to stay outpatient anymore. In the hospital they kept me doing pulmonary rehab (treadmill and recumbent bike) up to the day before surgery. There was also exercise using elastic bands to keep the arms, legs and core muscles as strong as possible. On July 4th we received notice that lungs were available and on July 5th the surgery was performed. Recovery went well mainly because they had kept me physically active as possible before surgery and I had a great surgeon. I was discharged on July 13th and back to pulmonary rehab on July 14th. Had to stay near the transplant center for 90 days post transplant to continue rehab, blood tests, x-rays, consultations and other tests. It started out as daily blood tests, rehab and twice weekly consults. Then it starts to taper off and gets to be further between appointments. After 90 days they basically released me to go home and continue recovery. Returned to work part time in October and am basically back to full time now. I continue to exercise and do home monitoring of blood pressure and spirometry. My appointments are basically two to three months apart now because I have a bronchialmalcia, part of the bronchial tube collapsed where it attaches to the esophagus. This is fairly common in lung transplants as they can not connect the small veins in that area. They do bronchoscopies to monitor for rejection, knock on wood so far no signs of that. All in all it has been a great journey and we are so thankful for the donor. With out her there is a good chance I would not be here today. Stay strong, think positive and exercise as much as possible. Best of luck to you.


Rosemary, Volunteer Mentor
@rosemarya

Posts: 1275
Joined: Aug 30, 2011
Posted by @rosemarya, Tue, Mar 14 3:12pm

Thank you, @timfair, for coming to Connect with this firsthand account of your journey. And what a journey you’ve been on! I am going to tag @dthoodjr who inquired about this 4 days ago. I hope that he will see it and gain some idea of what lies ahead.

I am happy for you and your loved ones that you are doing well. You speak volumes to all of us transplant patients when you say, “Stay strong, think positive and exercise as much as possible”.

Tim, I would like to welcome you to Connect, and I invite you to return to any of our discussions about transplant anytime you want. It is always my pleasure to meet and greet a fellow transplant recipient. May you continue to enjoy life as you move forward.
Rosemary


Terri M., Volunteer Mentor
@windwalker

Posts: 1390
Joined: Nov 18, 2016
Posted by @windwalker, Tue, Mar 14 8:14pm

Thank you for sharing your transplant experience. Which location did you
have your surgery at? Terri M.
 

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