October 19, 2018 at 2:22 pm #14911Marta RibeiroKeymaster
To be considered eligible for an organ transplant, patients will often go on a long and difficult journey. Candidates are put through a series of tests and actually receiving an organ will include a lot of waiting and hoping. To make the road to transplant a little easier, we’ve put together some advice from the Pulmonary Fibrosis Foundation, so patients know what to expect.
- Evaluation: If a patient decides to make themselves a transplant candidate, they’ll have to be evaluated first. Usually, the evaluation team includes a pulmonologist, a transplant surgeon, a transplant nurse coordinator, a transplant social worker, a dietitian, a psychologist, a physical therapist and an insurance coordinator. The key areas they’ll be looking at are physical and mental health, along with the patient’s support system.
- Eligibility: Overall, to be eligible for a lung transplant, a patient ought to be in good health (excluding the lungs), have an ideal BMI, be willing to comply with any prescribed meds and medical recommendations, be aware of how a transplant would affect them psychologically, have a steady support network, be aware of the financial effects (including how it would involve their insurance) among many other factors.
- After the Evaluation: After the team has evaluated the patient and made the decision to go ahead with the transplant, the patient will be provided with a lung allocation score (LAS) that will be based on many factors, including age, how severe the disease is, and how key organs are functioning. This LAS will decide the patient’s place on the organ waiting list.
- Waiting List: As soon as the patient has been approved, they’ll be put on the list. The wait is one of the hardest parts of the process and can take its toll on the patient’s (and their family’s) mental well-being. It’s important the patient maintains every aspect they were evaluated on, like their healthy lifestyle and their rehabilitation program. It also may be a good idea to check if the transplant center has a support group. The patient should remember that their transplant team may have to contact them at any time with regards to an available lung, so they will need to be easily contactable.
- Surgery: Lung surgeries of this nature can take anywhere from four to 10 hours. The exact length of surgery will depend on various factors, including whether it’s a single or a double transplant, the patient’s current overall health and the location of the surgery.
- After Surgery: There are a lot of steps to follow after a surgery, but even more so for a transplant. The team will be there to monitor any issues that may pop up after the operation. The main thing is to keep an eye on the anti-rejection meds and make sure the patient takes their immunosuppressants on schedule. Caregivers will also want to watch for certain side effects or bad reactions that may occur. It’s good to keep in mind that a transplant is a huge shock on the body and everyone handles it in different ways and at different paces.
Have you had a lung transplant or know someone who has? If so, what’s your experience? Share it below!
October 22, 2018 at 6:52 pm #14932Steve DaggettParticipant
I just had a single lung transplant 3 1/2 weeks ago, and I’ve been off oxygen since the day after the surgery!
I was in the hospital 14 days, partly because I was having some heart arrhythmia that they wanted to monitor. Otherwise I could have gone home earlier.
The difference was dramatic! There are 16 stairs to get into our house. Before surgery I would have to stop 2 or 3 times on the way up, then it would take me 5-10 minutes to recover afterward. I was on 5L of oxygen.
The day I was discharged and came home I was able to walk right up the stairs without stopping, and no recovery time!
The trade off is definitely the amount of meds I need to take, but each week my pulmonologist has been reducing the amount. First week in ICU I was on 50mg of Prednisone (yikes!). Next week was 40, then 35…now I’m at 20 and it will probably reduce to 5 or 10 soon, thankfully. Each day I take around 40 pills, but as of today my doc took me off several of them, so the amount is decreasing!
I was accepted for a single lung transplant in April 2018 at UCLA. UCLA’s typical protocol is if you’re 60 or over (I’m 61), they only do single lungs. Studies show that the outcome is virtually the same at that age as a double lung transplant. This way they can help 2 people with one donor. I found out that my donor was a young man under 30…very sobering!
We live in Oregon, so I had to move to SoCal to be closer and ‘on call’ 24/7. Fortunately I have family with a big house that is only 12 miles away! But with LA traffic it usually takes close to an hour to get there!
Now that I’m post-op I have to return to UCLA 2 to 3 times per week. That will soon go to 1-2 times, then once, then monthly, etc. I should be able to return to Oregon 3 months post op.
Recovery is going a little slower that I’d like – I still get tired out, but in a different way than before. I’m still a little ‘wobbly’, but that will go away soon. Can’t drive yet, probably in a week or two (can’t wait!)
I’ve had a marvelous experience at UCLA…I mean EVERYONE I’ve had contact with has been phenomenal! I highly recommend them!
Now I have to re-learn how to breathe correctly. I was on oxygen for 3 1/2 years, and struggled breathing for about 8 years before that. I do breathing exercises to increase my lung capacity. I had my first post op pulmonary function test today and it was remarkably higher than before…and it will only get better!
I was on the waitlist for exactly 5 months (to the day). My experience has been great (so far!). It sure is better than before! There were other transplant patients on my ward and a few of them weren’t doing so well – each one is different.
I’m happy to have my life back, with no tubes and cannula!!
October 23, 2018 at 7:44 am #14937
I am so happy to hear that you continue to do so well, and even more so, that you’re willing to share this experience with so many of us! What an incredible whirlwind this must have been for you, but I am so happy to hear you aren’t needing your oxygen anymore and that you are doing so well. This is wonderful news and gives so many of us so much hope!
Have they been able to get the arrthythmia’s under control now for you? I’ve heard of this happening before post lung transplant, likely just due to the stress of the body in surgery. Hope it is all managed/better now 🙂
So glad to hear the amount of medications is being reduced too. I know there is a lot due to the immune-suppression you need to be on to keep your body from recognizing the ‘foreign’ lung. However, sounds like the benefits outweigh the negatives; the story of you being able to do stairs with so much ease gave me goosebumps. I can’t wait for that day! It must feel so good though to know you’re tapering down on the Prednisone!
I can’t imagine the difference you feel in terms of the independence you will be able to get back. What organ donors give us all is just so incredible. Please let us know (me at least) if you have the opportunity to meet your donor’s family. I think this would be so incredible.
I am so happy for you Steve, please do continue to share with us how your recovery goes. I can’t wait to hear for when you get the approval to go back home to Oregon! That will be wonderful for all of you 🙂
Best wishes on a continued amazing recovery!
October 23, 2018 at 8:44 am #14942Mark MattisonParticipant
I had a double lung transplant 9 weeks ago. Best thing I could have done. Getting back to my normal self. I had IPF for 4.1/2 years and I was on O2 for 3 years and going down fast. I am 63 and was still in fairly good shape other than loosing muscle mass from not being able to do the things I wanted when sick.
I did not feel that the evaluation week was that bad. Just something you need to do. I was blessed with a high number and a 99.9 percent tissue match. I had the team put my self on the list immediately and was called with a set of lungs in 2 day. Unbelievable. I rented an apartment near the hospital for after the surgery which the hospital rents out for people out of town, which helped for the post surgery checkup appointments. Back at home, out and about but avoiding crowds. Best thing I could have done. Highly recommend to at least check out the program , see if you could be a candidate for a lung transplant and you can decide later if you want to go forward with the evaluation. But do it before you are to old, to sick, and not healthy enough to recover.
- This reply was modified 3 years, 1 month ago by Charlene Marshall. Reason: formatting
October 23, 2018 at 9:08 am #14944
Thank you so much for getting in touch and sharing this experience with all of us. It is so wonderful to hear what a great experience you and Steve have had with your lung transplants. I am so happy for you both!
Did you have a good experience with your transplant centre as well Mark? Did you receive a double? lung transplant or single lung? Sorry for all the questions! Just to clarify, you were on the list for 2 days? That is absolutely amazing news! Congratulations!
Wonderful encouragement and advice, thank you again Mark!
Continued best wishes for your recovery.
October 23, 2018 at 10:37 am #14951Patricia HaydenParticipant
Thanks for the positive sharing. I go in for evaluations on December 4. All my appointments will be on one day. I have been on O2 for 1 year (24/7) 65 year old. I want to have a better life and enjoy retirement with my wonderful husband.
October 25, 2018 at 10:06 am #14990
Patricia, thank you so much for giving us a timeline on when you go in for your evaluation for transplant. I will keep you close in thought as you endure those tests on December 4th. I hope you’re able to get all the testing done in one day, that’ll be tiring for you as the evaluation is done over a week here at my transplant center. Sending you best wishes and a positive outcome. Do you know when you’ll know the result of the evaluation (ie. whether or not you’ll be listed)?
Hang in there and thanks for writing, as always, it is great to hear from you!
October 26, 2018 at 9:18 am #15016PDKParticipant
I had a double lung transplant the end of April 2015 after waiting 23 months, however I had 5 dry runs during that time as well. Just bad luck with the matches and donor lung condition. The breathing tube had been removed and I had a cannula with 2 liters of air. I was sitting up in the bed when my Doc came in. He looked at the monitor which was showing 98% saturation and told the nurse to disconnect it. Everyone was astounded when it jumped to 99% on Room Air! Well, he said, don’t need that anymore.
The candidate screening, waiting and jumping out of your shoes every time the phone rings – is this “The Call”, the surgery, post op protocol at your center, and subsequent recovery, pills are all part of the package. I will add that exercise is crucial to recovery and longevity. Your team will monitor everything.
Getting a transplant is like getting on a horse for the first time. It does not take very long before you realize the horse is in charge.
October 29, 2018 at 8:38 am #15050
Thank you so much for sharing this experience with us! I always appreciate having people who’ve been through the lung transplant process on this forum as you have such valuable information to share for those of us facing it in future. I can’t imagine the feeling of seeing your oxygen levels be 99% on room air after struggling for so long with this cruel disease… it must have been absolutely amazing. I am so happy for you! Congratulations on such a successful surgery, especially after 23 months of waiting and 5 dry runs. Wow!
I suspect that my team will bring this up for me very soon, and I am pretty anxious about it as I’ve now been consistently under the cut-off FEV range for transplant for almost 3 months. Your story really makes me feel more confident in this process. Were you happy with your team and the transplant center that your surgery was performed at?
I love the analogy of transplant and getting on a horse, also very important to remember! 🙂
Thanks again for sharing, your story impresses me every time I hear it.
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