Gordon had a double lung transplant in 2017. His wife Lynn cared for him throughout the process. We asked them to tell us about their experience of the transplant process, from assessment to recovery.
These videos are intended to show the experiences of one person, and their carer, going through the transplant process. Please remember that everyone is different, and that this process might be very different for you.
Video transcript
0:08
[Gordon] Hello my name is Gordon and this is my wife Lynn. We’re retired and live on the southern outskirts of Sheffield. We have family in this area and down in Cheltenham.
0:26
[Gordon] Having been diagnosed with IPF in 2012 I had two pre-transplant assessments at the freeman hospital in Newcastle in 2012 and another one in 2017. Both paved the way for me to have a double lung transplant in November of that year.
0:55
[Gordon] Just thinking back to the assessments that I had I can remember how anxious we were, particularly about the first one. We’re registered at the northern general hospital in Sheffield so quite unfamiliar with the Freeman hospital and in fact very unfamiliar with Newcastle. So we really weren’t quite sure what to expect.
1:21
[Gordon] However what we were acutely aware of was the importance of the outcomes of the assessment. So whilst I was at the Freeman, if I was asked to jump, my natural response was ‘How high?’
1:40
[Gordon] After 3 days of intensive testing, x rays, breathing tests, bone density tests, blood tests, lots of other assessments. [Lynn] And a lot of sitting around for myself so make sure you bring a good book. [Gordon] Then we had an exit interview with the decision-making panel, and I can’t begin to tell you just how elated we were when we were given the news that I would make a suitable lung transplant candidate. I wasn’t at that time poorly enough to be added to the waiting list. But I was told that I would be monitored closely over time and if my condition did deteriorate then I would be invited back assessed again and added to the transplant list.
2:36
[Gordon] That was in 2012 and for the next 4 to 5 years I did reasonably well. There was some deterioration in my condition, but it was very gentle and steady up until 2017 where it worsened quite considerably. So, I was invited back at that time I was reassessed then considered poorly enough to be added to the waiting list and in the spring 2017 that’s exactly what happened.
3:11
[Gordon] The waiting period was probably the most stressful part of the whole process. I’ll let Lynn describe to you what happened between May and November 2017.
3:30
[Lynn] There’s no doubt that this was a very stressful time, Gordon was getting worse by the day and I was willing the phone to ring. During our 6 month wait we had 3 false alarms for different reasons before the ideal donor organs came along. Each time was a huge disappointment, but we turned them into positives, saying if the lungs weren’t 100% right, we’d be better of waiting.
4:00
[Lynn] When the day finally arrived we received a call early in the morning from our specialist nurse coordinator. She said that suitable donor organs are now available and an Ambulance would be with us in half an hour. And it was. We were blue lighted from Sheffield to Newcastle in a world record time of 2 hours 10 minutes. This was stressful in itself. We received a full briefing on arrival and Gordon was prepared for surgery and I will let him tell you the next steps.
4:32
[Gordon] So after the customary short back and sides, and the application of some deeply attractive surgical stockings I finally made my way down to theatre around tea time on the 25th of November 2017. I was accompanied by Lynn and step daughter Cheryl and we said our very nervous farewells at the theatre door. And that was it largely for me until 10:30 the next morning, but our experiences from that point were very different.
5:17
[Lynn] It was a very surreal situation going down to theatre I didn’t know what to say when I left Gordon at the door, and my daughter and I didn’t know what to do, or what we should be doing. We had rented a flat a couple of miles away so we went back had cheese on toast, gin and tonic and watched strictly come dancing. Then we tried to sleep, that was impossible. Until the phone rang at about 3am in the morning to say that all had gone as well as could be expected. We could have gone to see Gordon then, but he would be asleep and we were advised that we were better off trying to get some sleep ourselves. Which we did, and we made our way down to the hospital later that morning. To find Gordon sat up in bed, he still had the ventilator on but that was removed within half an hour It was amazing.
6:06
[Gordon] My experience on the other hand was short and sweet. It started with an injection in the back of my hand as I entered the operating theatre and concluded when I woke up in the recovery ward. Ready for my breakfast, ready and eager to know whether the mighty Sheff United had beaten Lynn’s team Birmingham City the previous day. I was able to sit up, the most remarkable thing, I was able to sit up in bed and have something to eat within an hour of coming around. Truly amazing.
6:48
[Gordon] I’d already anticipated that when I cam around I would have some enormous pain. But I didn’t in fact, I had only a mild discomfort in my throat where I had a ventilator fitted during the course of the operation. Then afterwards I do recall that they was some discomfort when I coughed. And then almost excruciating discomfort when I sneezed. But I only ever did that once.
7:23
[Gordon] After the operation I was out of hospital within 3 weeks with 4 weeks we were walking up and down the sands of Tynemouth and 2 weeks after that having completed some physio work and tested on a regular basis I was discharged. I was at home back in Sheffield on the 7th January 2018
7:54
[Gordon] People who know us often ask ‘So what’s your life like now?’ really to do that question justice I have to think back to what it was like before my operation and it was pretty bleak. I was on 24/7 oxygen, I was in a wheelchair, I wasn’t able to dress myself, had to move my bedroom from upstairs to downstairs and I took up residence in our dining room. Taking a shower was absolute purgatory, it was awful. And now, post recovery, within a few weeks I was able to walk 20-30 miles around the peak district, we’ve been able to rekindle our passion for travel, we’ve been to Florida, we’ve been to France, we’ve been on a cruise to Sri Lanka and India. We’ve even made preparations to move home and crowning all this I’ve even got my seat back at Bromwell Lane.
9:06
[Gordon] Life’s not entirely normal now. 3 years after the event I still take up to 20 tablets a day every day and I am required to go up to Newcastle to the clinic about 4 times a year. But then I put that in the round and consider is this a price to pay. Most certainly is. [Lynn] Definitely.
9:38
[Gordon] What advice can we give people who have been lucky enough to be referred for a transplant assessment. Well first of all consider yourself to be very fortunate and go for it. The second is listen very carefully to what’s being asked of you and adopt a can-do attitude. Thirdly, trust in your consultant and your nursing team, because they really do know what they’re doing and they have a real care for you personally and whatever discomforts and obstacles you encounter along the way, keep your eye on the prize, because it is considerable.
10:28
[Lynn] As a carer you are very important person in the process so look after yourself. Have someone to confide in. Don’t bottle things up. There’s lots of things that I wanted to talk about that I couldn’t talk to Gordon about, the main one would be preparing myself for the worst. You hopefully have a support group near you. So this is the carers as well as the patients. It’s important for carers to have some me time. I used to go out and try to play golf a couple of times a week, but always make sure there was someone with Gordon when I did that. Don’t be afraid to put off visitors, this is both before transplant when your patient is ill and also post-transplant when you’re in hospital and accept help when it is offered. It’s hard work being a full time carer, both physically and mentally, but the end result is well worth it.
11:26
[Gordon] In conclusion we wish you well with your assessment and urge you to accept it for what it is. It’s a means of insuring that you receive the best possible care and treatment that’s available for you r illness. And if that means a transplant, then do embrace that as an opportunity. Our very best wishes to you and to your families.
[Gordon] Hello my name is Gordon and this is my wife Lynn. We’re retired and live on the southern outskirts of Sheffield. We have family in this area and down in Cheltenham.
0:26
[Gordon] Having been diagnosed with IPF in 2012 I had two pre-transplant assessments at the freeman hospital in Newcastle in 2012 and another one in 2017. Both paved the way for me to have a double lung transplant in November of that year.
0:55
[Gordon] Just thinking back to the assessments that I had I can remember how anxious we were, particularly about the first one. We’re registered at the northern general hospital in Sheffield so quite unfamiliar with the Freeman hospital and in fact very unfamiliar with Newcastle. So we really weren’t quite sure what to expect.
1:21
[Gordon] However what we were acutely aware of was the importance of the outcomes of the assessment. So whilst I was at the Freeman, if I was asked to jump, my natural response was ‘How high?’
1:40
[Gordon] After 3 days of intensive testing, x rays, breathing tests, bone density tests, blood tests, lots of other assessments. [Lynn] And a lot of sitting around for myself so make sure you bring a good book. [Gordon] Then we had an exit interview with the decision-making panel, and I can’t begin to tell you just how elated we were when we were given the news that I would make a suitable lung transplant candidate. I wasn’t at that time poorly enough to be added to the waiting list. But I was told that I would be monitored closely over time and if my condition did deteriorate then I would be invited back assessed again and added to the transplant list.
2:36
[Gordon] That was in 2012 and for the next 4 to 5 years I did reasonably well. There was some deterioration in my condition, but it was very gentle and steady up until 2017 where it worsened quite considerably. So, I was invited back at that time I was reassessed then considered poorly enough to be added to the waiting list and in the spring 2017 that’s exactly what happened.
3:11
[Gordon] The waiting period was probably the most stressful part of the whole process. I’ll let Lynn describe to you what happened between May and November 2017.
3:30
[Lynn] There’s no doubt that this was a very stressful time, Gordon was getting worse by the day and I was willing the phone to ring. During our 6 month wait we had 3 false alarms for different reasons before the ideal donor organs came along. Each time was a huge disappointment, but we turned them into positives, saying if the lungs weren’t 100% right, we’d be better of waiting.
4:00
[Lynn] When the day finally arrived we received a call early in the morning from our specialist nurse coordinator. She said that suitable donor organs are now available and an Ambulance would be with us in half an hour. And it was. We were blue lighted from Sheffield to Newcastle in a world record time of 2 hours 10 minutes. This was stressful in itself. We received a full briefing on arrival and Gordon was prepared for surgery and I will let him tell you the next steps.
4:32
[Gordon] So after the customary short back and sides, and the application of some deeply attractive surgical stockings I finally made my way down to theatre around tea time on the 25th of November 2017. I was accompanied by Lynn and step daughter Cheryl and we said our very nervous farewells at the theatre door. And that was it largely for me until 10:30 the next morning, but our experiences from that point were very different.
5:17
[Lynn] It was a very surreal situation going down to theatre I didn’t know what to say when I left Gordon at the door, and my daughter and I didn’t know what to do, or what we should be doing. We had rented a flat a couple of miles away so we went back had cheese on toast, gin and tonic and watched strictly come dancing. Then we tried to sleep, that was impossible. Until the phone rang at about 3am in the morning to say that all had gone as well as could be expected. We could have gone to see Gordon then, but he would be asleep and we were advised that we were better off trying to get some sleep ourselves. Which we did, and we made our way down to the hospital later that morning. To find Gordon sat up in bed, he still had the ventilator on but that was removed within half an hour It was amazing.
6:06
[Gordon] My experience on the other hand was short and sweet. It started with an injection in the back of my hand as I entered the operating theatre and concluded when I woke up in the recovery ward. Ready for my breakfast, ready and eager to know whether the mighty Sheff United had beaten Lynn’s team Birmingham City the previous day. I was able to sit up, the most remarkable thing, I was able to sit up in bed and have something to eat within an hour of coming around. Truly amazing.
6:48
[Gordon] I’d already anticipated that when I cam around I would have some enormous pain. But I didn’t in fact, I had only a mild discomfort in my throat where I had a ventilator fitted during the course of the operation. Then afterwards I do recall that they was some discomfort when I coughed. And then almost excruciating discomfort when I sneezed. But I only ever did that once.
7:23
[Gordon] After the operation I was out of hospital within 3 weeks with 4 weeks we were walking up and down the sands of Tynemouth and 2 weeks after that having completed some physio work and tested on a regular basis I was discharged. I was at home back in Sheffield on the 7th January 2018
7:54
[Gordon] People who know us often ask ‘So what’s your life like now?’ really to do that question justice I have to think back to what it was like before my operation and it was pretty bleak. I was on 24/7 oxygen, I was in a wheelchair, I wasn’t able to dress myself, had to move my bedroom from upstairs to downstairs and I took up residence in our dining room. Taking a shower was absolute purgatory, it was awful. And now, post recovery, within a few weeks I was able to walk 20-30 miles around the peak district, we’ve been able to rekindle our passion for travel, we’ve been to Florida, we’ve been to France, we’ve been on a cruise to Sri Lanka and India. We’ve even made preparations to move home and crowning all this I’ve even got my seat back at Bromwell Lane.
9:06
[Gordon] Life’s not entirely normal now. 3 years after the event I still take up to 20 tablets a day every day and I am required to go up to Newcastle to the clinic about 4 times a year. But then I put that in the round and consider is this a price to pay. Most certainly is. [Lynn] Definitely.
9:38
[Gordon] What advice can we give people who have been lucky enough to be referred for a transplant assessment. Well first of all consider yourself to be very fortunate and go for it. The second is listen very carefully to what’s being asked of you and adopt a can-do attitude. Thirdly, trust in your consultant and your nursing team, because they really do know what they’re doing and they have a real care for you personally and whatever discomforts and obstacles you encounter along the way, keep your eye on the prize, because it is considerable.
10:28
[Lynn] As a carer you are very important person in the process so look after yourself. Have someone to confide in. Don’t bottle things up. There’s lots of things that I wanted to talk about that I couldn’t talk to Gordon about, the main one would be preparing myself for the worst. You hopefully have a support group near you. So this is the carers as well as the patients. It’s important for carers to have some me time. I used to go out and try to play golf a couple of times a week, but always make sure there was someone with Gordon when I did that. Don’t be afraid to put off visitors, this is both before transplant when your patient is ill and also post-transplant when you’re in hospital and accept help when it is offered. It’s hard work being a full time carer, both physically and mentally, but the end result is well worth it.
11:26
[Gordon] In conclusion we wish you well with your assessment and urge you to accept it for what it is. It’s a means of insuring that you receive the best possible care and treatment that’s available for you r illness. And if that means a transplant, then do embrace that as an opportunity. Our very best wishes to you and to your families.