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After Care Requirements for a Lung Transplant
Recently there has been several members who have inquired about the post-operative requirements following a lung transplant. After enduring idiopathic pulmonary fibrosis (IPF) for about a year, I received a single lung transplant on December 4, 2015. The operation was performed at the Cleveland Clinic by Dr. Gosta Petterson. I felt comfortable with this doctor, and I knew I was in good hands. I met him twice from what I can remember. The first time was in the operating room; Dr. Petterson walked in and the surgical team snapped to attention. I was told this was going to happen by the anesthesiologist fellow who had placed an arterial IV in my wrist, however, I didn’t think the doctor’s entrance would be this dramatic. Dr. Petterson then spoke to me and the team while everyone looked at the monitors standing with their hands behind their back and at attention. I said to myself, “I am in good hands.”
The next thing I remember was waking up a couple days later in ICU and my wife standing over me telling me how great I did. I was then moved to the transplant floor and the recovery process began. I was not in a lot of pain; 4 or 5 on the scale of 10, so I had them remove my morphine drip. A fentanyl patch on the incision did the trick. Nurses were amazed, but for some reason I have always had a high tolerance for pain.
Physical therapy would start slowly and eventually evolve into climbing stairs. I was in the hospital for 18 days. They wanted to release me after 10 days but I was draining too much out of the last chest tube. I went home with a drainage bulb, and my wife was responsible for emptying. It is amazing what comes out of our bodies. While recovering in the hospital I was responsible for setting up my medicines everyday so I could get used to the process for the transition home. Having placards and knowledgeable nurses made the task simpler.
I knew beforehand the do’s and don’ts post-transplant. The main ones were no more working in the yard; mainly the dirt because of mold spores . No more raw fish, no runny eggs for at least 6 months, and I had to make sure my meat was was cooked at the appropriate temperature. I had an education session with the transplant pharmacist as well. He went over the various medications associated with transplant and the medications used to fight infection, rejection, and a host of other possible abnormalities occurring in your post-transplant recovery. The one thing stressed the most was the importance of taking your medicine regiment on time. The pharmacist stated there was a 15 minute window before and after the scheduled time slot of taking your medicine. Patients who adhere to this rule greatly increase their chance for longevity.
On other online support groups I have read, there were patients who didn’t want to be evaluated for a transplant because of the requirements for the rest of your life. I can attest this has all been well worth it for me. I have embedded the Cleveland Clinic’s page detailing what happens after a lung transplant.
Would any of you be deterred of being evaluated for a transplant because of the strict requirements?
What are your thoughts on receiving a lung transplant and following rules for the rest of your life?
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18 Replies
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Sorry Mark, I just noticed this post after I tagged you with questions regarding this same subject. Thanks for the information as I found it very helpful. Do the post surgery medications have any negative side affects?
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Hello Michael, I can answer both of your comments. I had to lose weight in order to qualify for the list. So in doing that I followed my pulmonary phase 3 rehab regiment after I completed the pulmonary rehab phase 2 portion. Phase 3, you basically do the rehab on your own. At the Cleveland clinic you had to be physically active in order to be in compliance. I worked out up until the day I received the call for transplant. Be in the best shape possible. You will thank yourself after you recover from surgery quickly. I didn’t have any complications during or after surgery and knock on wood I am doing good after 3 1/2 years. Aftercare medicine does have some side affects. I had diabetes attributed to prednisone for 3 months after surgery. It was controlled and I was told this happens to many patients. Prednisone does have many negative side affects but I have only experienced the short term diabetes. My other anti rejection drug is also nasty but it keeps me alive. Tacrolimus is the medicine. Some people encounter tremors and shakiness in their hands. I had slight but it went away before I was discharged from hospital. I have seen some patients who really shake even years after transplant. The bottom line everyone is going to have a different experience but I go by the mantra I will do everything I can to keep myself healthy. There are many who don’t follow this train of thought and disrespect the gift of life they were given and they put themselves into a position where I would not want to be.
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Thanks so much Mark for your reply! I admit I’m possibly being overly optimistic that a medical miracle will result in a drug which not only stops the fibrosis but will also reverses the disease. My last breathing test showed my DLCO reading as 30 (I think normal is 80-110) with the FVC 81 and FEV 81 so I realize I’m probably in the late stages of this disease and I need to make a dicision soon.
Again, I really appreciate you sharing your experience! Have a great day!
Mike
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Hello Michael, your fvc and fev are pretty good. I always had the same thoughts as you about a medical miracle happening. Unfortunately I don’t foresee this happening in the near future. It never hurts to start the evaluation process early. Take care. Mark
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@mark-koziol How do you feel after after you recover from the operation? Is it the way we felt before the onset of the disease? Do you have the energy you once had? What are the chances of the underlying causes of the IPF/PF scarring the new lung?
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Hello Cynthia, yes I almost feel normal but I am basically working with one lung. My wife spoke of this the other day. In the conversation I told her some days I feel invincible and don’t even feel like I went through the transplant surgery. I am never fatigued but I must have at least 5 hours of sleep a night or I will feel tired until I rest and nap. Doctors told me there is no chance of PF affecting the donor lung. I do have energy and am currently in Poland. I was up for 36 hours and was still running pretty good. It’s 5am here and I git Almost 7 hrs sleep and right now I feel rested and ready to go. Thank you for inquiring. Mark
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I had a double lung transplant at age 70 a year and a half ago at Mayo Clinic – Jacksonville. I can’t emphasize enough the importance of maintaining the discipline of daily exercise. You need to be ready when rejections, inflections and viruses occur.
I believe my health is now back to pre-IPF state back when I was 68.
Bob
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Hello Robert, thank you for your input. It is always great to hear when a fellow transplant brother or sister is doing well. Best wishes. Mark
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Morning everyone…I had a double lung transplant on May 9 2016 one day after Mother’s Day…why I bring that up ? The donor died of a brain aneurysm on that Friday and officially died on Mother’s Day May 8 2016..I received his lungs 24 hrs. later….I bring this up because his Mother wrote me a letter while still in the hospital telling me all about her first born child and his life(he 36 yrs old)…It’s a miracle…I’m thankful greatful feel very blessed and hopefully will meet his family someday…One last thought there was never a doubt in my mind about having a transplant and now I can see my grandkids graduate and be there…thanks Chet Salisbury
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Hi Chester,
Thank you so much for sharing your story, and I am so happy to hear that you’ve had a successful transplant. Congratulations! I’ve never heard of donor/recipients being able to correspond with one another that soon (usually it is at least 1 year or after) and has to go through a hospital professional, such as the transplant coordinator. I am so glad the experience has been so positive and rewarding for you. It gives many of us hope Chet, thanks for sharing 🙂
Charlene. -
Good morning to all. I am here in Durham, NC / Duke University Medical Center waiting for a new lung. It is important that anyone thinking about a lung transplant MUST understand that this is a lifetime commitment. Exercise, drug management and lifestyle changes. This surgery is not like having your appendices removed where after a time period of being uncomfortable you can forget about it. Everyday you will be thankful for the new lungs and each day do what is necessary to keep those lungs strong. You can’t forget!!
Here at Duke they provide candidates with educational programs dealing with all aspects of the journey. Exercise is a major component of their program. The stronger you are going in the better off you will be during recovery in the hospital and when you get back home. At the same time you meet other candidates who are on the same journey. Having that kind of support is very important because you know that they know what you are talking about.
Everyone please keep up the good work you have done so far and keep those new lungs safe and healthy.
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Hi Carol ( @mom49 ),
Thanks for the update and reminder about the importance of exercise, very important. Are you admitted to Duke right now on the lung transplant waiting list? I’ll be sending good prayers and thoughts to you as I’ve heard this is a daunting wait. Duke is an excellent centre so I know you’re in good hands 🙂
Keeping those lungs and the ultimate gift of life healthy is so important. Kudos to you for sharing!
Charlene.
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Thank you Charlene for the kind words and prayers. Yes I’ve been on the Duke transplant list for 22 days. Days have gone by fast. When I mentioned exercise, Duke requires you to do 2 hours a day / 5 days a week at your own pace. 20-30 minutes walking, 20 minutes bike / new-step, 30 minutes of floor exercises and 30 minutes of weights. This is from day 1 till the day you get your transplant. Walking requirements in the hospital and a final session of 23 days back in rehab before you can “go home”. And they’d like you to keep up the good work you’ve learned and continue at your local gym. And they worked three 6 minute walks into the program also. So waiting is tough but with exercise every day your time is well spent!
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Wishing you all the best Carol! Glad to hear the days have gone by fast, and it sounds like Duke is setting you up for as much success as possible for post-transplant recovery. Keep us posted on how you’re doing, and kudos to you for working so hard 🙂
Warmest regards,
Charlene. -
It’s so good to hear from several lung transplant recipients about their experiences – I will add mine to this thread in the hope that it too might encourage others who may be undecided :
I received a single lung transplant at Cleveland Clinic in Feb 2014 (at age 71) – I was also listed simultaneously at Duke University but switched to CC at the last minute and am glad I made the decision to switch. I can provide the reasons for any one who may be interested. I am 76 years old now and lead a near normal life with no co-morbidity, no travel restrictions, lift weights with a trainer 3 times/week, sleep 8 hours a day, spend winters by the Altantic Ocean in Florida and summers on a lake in Michigan, follow the usual diet restrictions listed in the original post by Mark, occasionally drink a glass or two of wine with dinner, take around 30 pills/day without having missed a dose in over 5 years and monitor my vital signs daily. I have access to the Cleveland CLinic’s very responsive post-transplant care center 24 hours a day and have been assured that they will arrange to fly a jet down to any part of the country to bring me back to Cleveland for intensive care if I experience a lung organ rejection. During my semi-annual check up at Cleveland Clinic, they advise me to keep doing whatever I’m doing because it is working perfectly. So far, I have had no acute or chronic rejections, nor any signs of major co-morbidity resulting from the side effects of the drugs I am on. In short, life is a lot better now than when I was in a wheelchair on 12-15 l of oxygen around the clock.
The bottom line is that IPF patients should at least explore the lung transplant alternative because, if successful life can be very enjoyable post transplant. I would be happy to answer any questions that pre-transplant patients might have from the viewpoint of someone who has had a very successful and rewarding experience.
Les
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Hello Les, my fellow CCF lung transplant brother. There is not much I can add to your post. I am so happy you are doing great and everything you mentioned is right on point. Keep doing what you are doing and glad you are enjoying life. Best wishes. Mark
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Thank you for sharing, Mark & other posters!
Questions..
1) How long post surgery before you’re able to go out (with or without mask)?
2) What determines if you get a single or double transplant?
3) How well does one lung do? My father had 1/2 of one lobe removed due to lung cancer. He lived for many years, however, his breathing was diminished. Curious, if you were on O2 before the transplant, wouldn’t your one diseased lung still require O2?
Thank you,
Barbara
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Hello Barbara, I am happy to answer your questions.
1) I guess this one is a preference and knowing your immediate environment. On my hospital visits I wore my mask but when in office with doctor I didn’t. For about the first 2 years areas I deemed dangerous I wore my mask, funerals, church, visiting family members in hospital, in airports, etc. I just took a trip to Europe for three weeks and I didn’t put the mask on once. Every one has their preference on when to wear your mask. My doctor is ok with it. I will put it on visits to hospital or nursing home to visit people.
2) Every transplant center has their own criteria for distribution of organs. I had an esophageal motility problem and this is the reason I received a single lung transplant.
3) My saturation is somewhat diminished but I can walk freely and I am not in a wheelchair. My sats at rest are from 96-98 and my sats at exertion are at 92-94. I do pretty good on one lung. The optimal situation would be for my native lung to die off and not require 02. I don’t know if this has happened. I work very hard to keep in shape. On vacation I just walked up the acropolis and I was very proud of this fete. I wrote a column about this. I will provide the link. I also wrote a column on how I amped up my workouts. This link will also be provided.
https://pulmonaryfibrosisnews.com/2019/07/17/dealing-pressures-vacationing-lung-transplant/
https://pulmonaryfibrosisnews.com/2019/05/01/physical-fitness-workout-routine/
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