Lung transplant: investigating the pros and cons of double transplant

Posted by zoeh @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

Interested in more discussions like this? Go to the Transplants Support Group.

@timfair

@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.

Jump to this post

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

REPLY
@timfair

@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.

Jump to this post

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

REPLY
@dthoodjr

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?

Jump to this post

@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

REPLY
@dthoodjr

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?

Jump to this post

@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

REPLY

Hi there. I just turned 63 on Dec 13. Was told yesterday that I need to get listed for a transplant. I am in the same boat you are in. I was almost listed in 2016, but was put on the wait and see list. I am also at 29%. Living with a transplant is no picnic either. It is hard work to stave off infections, cancer, and organ rejection. I want to fight to stay on this earth as long as possible for my daughter. Are you being seen at Mayo?

REPLY
@windwalker

Hi there. I just turned 63 on Dec 13. Was told yesterday that I need to get listed for a transplant. I am in the same boat you are in. I was almost listed in 2016, but was put on the wait and see list. I am also at 29%. Living with a transplant is no picnic either. It is hard work to stave off infections, cancer, and organ rejection. I want to fight to stay on this earth as long as possible for my daughter. Are you being seen at Mayo?

Jump to this post

@windwalker, Hi, Terri. I was happy when I saw that you made a post on Connect this morning, but I did not expect to see the message that you shared. This is not the kind of belated birthday gift anyone would ask for.

When I read that you will need a transplant, my mind immediately reverted back to the time when I got that same message. Terri, while I have a different transplanted organ(s), I understand the waiting, the stress. the many tests and procedures, and the feelings of aloneness that can accompany the evaluation for being listed and all of the waiting. I wish that I knew more about lung transplant to share with you. One of the most positive things to keep in mind is that the entire transplant team is going to be fully focused on you and they are dedicated to your best health and success.
Were you taken by surprise at this news, or had you expected it? Will you be at Mayo JAX?

REPLY
Please sign in or register to post a reply.