Lung Transplant: What can I expect?

I should have added what you feel, is they pain tolerable after, how you felt afterwards and now....

You can read my transplant story for the back story. However, when you first come back to the ICU room they don't ask if you want pain meds, you are just given them and you need them. They took me off the heavy ones in a couple of days, because I wasn't asking for meds very often. I would ask for meds before physical therapy and then go and do what I was allowed to do. I kept pushing myself to walk, to climb stairs anything that I could. I still needed Tylenol when I came home. However, now a little over a year later, I still have some discomfort but don't take anything for it. I would have been dead by now without my transplant, so it is well worth any discomfort. I have had worse pain when I twisted my spine in an accident. At that time, I would actually be in so much pain that I would be throwing up, which I consider a level 9. Nothing like that after the transplant. The worst it got was a level 8 and that is because I don't like to take drugs, so I would hold off as long as I could. The hospital that I went to monitored your pain and would check in with me often to see if I needed anything. Then when I did they would give it to me as quickly as they could. Everyone's pain level is different though.

Thank you. I am nervous and excited to get started and your story helped me as not sure what i expect. So glad your doing better. God Bless

I am beginning my workup for a double lung transplant at The Jacksonville Florida location. I’ve been listed once but removed myself, but now many many years later with no other options I’m back and ready, however my finances are not. My Medicare will cover the expenses but I’m searching g for any type grants or financial aid if out there. I cannot afford the 2 week stay, the food, the gas to get there, or housing. I still have my household bills and rent that needs to be paid. I do recall receiving housing and food vouchers when I went through this process prior. I’ve been reaching out to my social worker as they were the ones that handled the application for assistance but have had no response after about 2 weeks of inquiring. My testing begins in October 17th and my anxiety is in an uproar. I’ve given all my worries to God and know he will provide, but I’m also trying my part as well. Any assistance and guidance will be wonderful. Thank you so much
Natalie

Hi Natalie, Unfortunatly I am not aware of any resources at this time, I have a phone appt. with a Social Worker next week and will ask if there are any resources available and what they are. We are fortunate to live about 2hrs away and right now I am more concerned for my husband driving back and forth as his health is not 100% when I got the transplant. I am scared of some of the tests and hope they have any alternatives as believe it or not I have a fear of needles. I too have given what I thought was all to Your Lord but, now that I in the evaluation process things are looking and feeling much different.

I think you will get use to the needles. When you are in the hospital, it's not too bad because you have multiple IV lines and a central line at first. The tests are really not to bad. The hardest part of the tests for me was just trying to stand up for some of them and getting the oxygen tanks. Since I was on 8 liters at the time most of the tests were being done, I needed a special type of nurse that can do that. Most of the nurses in the hospital can only hook someone up to 4 liters. On top of that due to being on 8 liters a lot of times I needed the big canister unless they were going to switch me to room oxygen for the test. My husband had a hard time pushing the wheelchair and the big canister. However, we developed a system if we didn't have someone assisting us, where I would be able to push it with my feet (as long as my husband was going straight it wasn't too much of a problem).
However the follow up appointments, you will be giving blood each time. So that is up to 4 times a week at first. Then you get some that are really not good at it and my veins are really good. I joke that a blind person could take my blood, because not only can see them, they stick out most of the time.
To make it easier for yourself, make sure to drink a lot of water the day before. If you can drink that day, drink a lot of water prior and after. If you are dehydrated, your veins go in more and it is harder for them to do IV or take blood from you, which means more pokes.

Good morning, have you had your transplant? I appreciate your advise and will drink plenty of water. Thank you for responding. My concern will then be going to the bathroom after drinking water and lying flat for some of the tests. I guess no matter what we do we have to face the many challenges big and small. I have resolved myself to knowing when I do get my transplant there will be a lot of needles in the hospital as the doctor informed me I will have tubes and needles everywhere, but in my mind I am sedated so easy peasy. It's the now that worries me. The many tests prior to knowing if I will be listed. I worry about my husband handling the brunt of caring for me, the back and forth and his workload will suffer. I also think of how we will manage after I am home. I know I am overthinking so many things and keep telling Our Lord I am handing him my fears but, then I start thinking of all the IFs after transplant. The suppressed immune system leaving us so vulnerable to colds and infection, rejection, the many tests after, the possible other diseases you can get. So much issues that can happen I sometimes wonder how worth it is to move forward🙁

Yes, I had my double lung transplant May 2022. When they first place the central line you are asleep, but you are awake for the rest before and after the surgery. Try to keep as active as possible up until the time of your transplant, you will be better off. I wasn't able to do much, so it wasn't very good for me. However, as soon as I could I was up walking with whoever would walk with me and then on my own around the thoracic floor.
It depends on what state you live in. However, my husband was able to take 12 weeks off to take care of me by law and it was paid leave. I really only needed him for the first few weeks, but then I had other complications and started passing out when I was doing little things like getting a glass of water. So it was good that he was still there.
My husband and son have both contracted COVID since my transplant and I was able to quarantine them to a different floor and never caught it again myself. However, there a lot of protocols that I put into place for a couple of weeks around the time that they didn't feel well. As soon as someone has a scratchy throat, I stay away. Whenever I go out, my mask is on. I try to keep away from all small kids and anyone that has any signs of sickness. So far I have been good. I have had three episodes of the start of rejection, which were controlled by medication. There are many signs of the beginnings of rejection, so it's not like your lungs just stop working or that you can't breathe. Two of the times it was caught when I had my bronch and the other time when I had a persistent cough and follow up blood work showed that something was going on.

Wow, you are amazing. Did they tell you why you were passing out as that must have been hard? I am having trouble doing anything as my health has certain

Sorry sent by mistake. My health has certainty become worse and although I try to get as much exercise done from my chair as walking has become more difficult and very short of breath and o2 levels drop considerable. I still try but figuering out my limitations. Its going to be difficult to keep my family away but, I have discussed them all wearing masks when visiting the 1st few months. Right now I am praying for courage to have the strength to move forward. May you continue to do good and thank you for taking the time and adding your info as you have helped me. God Bless