Before Surgery Evaluations
Right Heart Catheterization (RHC)
A large catheter is placed in the neck with numbing medication to assess the overall function of the heart and blood flow from the heart to the lungs. The catheter is removed shortly after the procedure and the site is monitored for bleeding for a couple of hours prior to be released home the same day.
Left Heart Catheterization (LHC)
A large catheter is placed in the wrist or groin with numbing medication to assess the coronary arteries, which provide blood flow to the heart. Recovery time is the same as the RHC.
Colonoscopy
An exam using a flexible scope with a tiny camera at the tip visualize the tissue of the colon and rectum.
pH Manometry and Impedance A thin catheter (as small as the tip of a pencil eraser) is placed in the nose to assess the esophagus. For a complete assessment to be done the catheter must remain in place for 24 hours.
EGD / Esophagogastroduodenoscopy
An exam using a flexible scopethat looks at the tissue from the esophagus past the stomach to the small intestine. Tissue samples (biopsies) may be taken for testing if any abnormalities are identified.
Caregiver Needs:
Why does the team require that I have caregivers who are committed to helping me after transplant?
Patients who have had a lung transplant must have at least 2 adults in their life that can act as caregivers for the first 2 to 3 months after leaving the hospital. At least 1 of these caregivers must be with you 24/7. Every patient needs help to manage their plan of care for the best possible results after surgery. The transplant team will let you know when you are ready to begin caring for yourself. This will depend on your recovery.
From Q&A, Surgery and After
Can you tell us a bit about the recovery after surgery?
That was really difficult for me because I couldn’t speak. I couldn’t hardly do anything after surgery because of the complications that I had, and I was so weak. It was very hard for me to give up my independence completely – completely! Nobody wants to do that, you don’t have charge of anything! That was probably the hardest for me – to not have any say in what was happening. You just give it all up. You can hear everything going on around you…it was really hard at first because I was so out of it most of the time, and even when I got better and I knew what was going on around me, I still didn’t have too much input into things.
What are some things that were surprising or unexpected for you during your recovery?
Not being able to talk surprised me; I don’t know, maybe I wasn’t paying attention or something, but I didn’t think I wouldn’t be able to talk right afterwards. I don’t know why I didn’t know that, but it caught me way off-guard. I wasn’t able to talk because I had a tracheotomy done since I needed the ventilator to help me breathe for a while after the transplant surgery. Also, some of the drugs were so strong…there was a time I remember writing a note to my sister, and I was writing away and writing away and gave her the paper. She looked at it and said, “Di, there’s nothing here.” She showed me the notebook and the whole paragraph was just scribbles, totally illegible.
Can you talk about needing caregivers – people to help you afterwards, once you get home – 24/7 at first? What kind of work did you have to do logistically but also psychologically to set that kind of support up?
It’s funny – I had a few close friends, and I was actually surprised…because you learn human nature. I was surprised because there were a few people who I thought would step up, that didn’t. People, when they are under that kind of stress…being a caregiver is really hard work. For me, a very dear friend and my sister really stepped up. None of them really knew what to expect. What really threw us was that I had to go home with a feeding tube, and that was hard for all three of us because none of us were expecting that.
How long did it take, after you got home, before you felt like you were recovered enough and strong enough to do things on your own?
For me it was about 3 months. I had to get back a lot of my strength and get a lot of weight on, to where I could actually do things. Even though I went to rehab there was still a lot of strength I had to keep working on. My caregivers were with me at least 3 months before I let them go. It was at least three months before I drove. I really had to work to get my strength back. So, all in all, I was in the hospital for 3 months after the surgery, then about 3 weeks at rehab, and then another 3 months or so before I really turned a corner. I was doing some form of physical therapy that whole time.
Can you share examples of any bumps in the road along the way – have you been readmitted to the hospital, dealt with any long-term conditions?
Through the five years so far, I’ve been hospitalized probably at least once a year with either pneumonia or different types of infections. I was thankful that each time everything got cleared up, whether I was in for one week or a month, or whatever. I did get chronic kidney disease from the medications – they can definitely cause some serious long-term side effects. I have some osteoporosis, I’ve had cataracts. So, there are definitely side effects but I’ve been fortunate enough to deal with things as they pop up. For the most part everything can be dealt with – you just have to handle it when it comes. I’d rather deal with these occasional issues than to have never gotten my lungs – that’s the trade-off. I was told at the very beginning that getting new lungs isn’t really a cure-all, it’s a type of therapy. It might have caused other issues, but I’m still doing really good on the overall scheme of things. But you do live with different infections and stuff but if you get a handle on it quickly they can be taken care of.
ONE Positive paragraph…
Would you mind sharing any memories from these past 5 years that have been meaningful to you that you’ve been able to see thanks to the gift of life?
There are so many things that you take for granted. I stopped singing a long time ago because I couldn’t breathe. Now I love singing along to songs when the music is on (not that I have a good voice mind you) – that to me has been really great. I have been able to travel, which I just couldn’t do before. It was too much. I’ve gotten involved in different organizations. I am just enjoying life again, in every aspect. I can get up and go – I can drive around – I can do everything that everyone else does. It’s just great, it’s like before I got sick. There are trade-offs, there are things that go wrong but nothing has happened to where I can’t do things I enjoy. I’ve done all sorts of things – concerts, music, singing, traveling – and these past 5 years have just been incredible for me.