Hello,
I just wanted to ask the community whether they had been through the process of being assessed for a lung transplant or not? What was your experience with the assessment? Did you get accepted as a transplant candidate? What condition did you have that led you to get assessed? Where their any potential stumbling blocks to you being accepted?
Thanks
Hello Mr. Blue. There are a few people here who have been through the process. I hope they will also chime in to tell of their experiences too.
The testing for transplant is probably the most thorough and rigorous health assessment you will ever undergo. I think some of this may vary from hospital to hospital but some of the tests include, x-rays, CT scans, heart catheterisation, desaturation studies, lung function tests, echocardiogram, colonoscopy, endoscopy, six minute walk test, VQ scan, blood work and, kidney function test and dopplers. I stayed in the hospital for a week or so to complete all these tests. Some people do it as an outpatient.
After all these tests, they wait for the results and if there is nothing concerning about them they will proceed to make a decision. You will need your caregiver to accompany you to the doctor's visits so you can all get on board with what will happen and all the medication you will need post transplant. There is a lot to take in.
Some issues that may cause a patient to be deferred or ineligible are weight, either too high a BMI or too low. In which case they will want the person to lose or gain weight before being listed. Cancer is unusual but sometimes they find cancer during the testing. In which case it must be treated and the patient must be cancer free for a couple of years before being able to list again. Being very frail and not strong enough to survive the operation and after care of transplant is a possible demerit but sometimes with some rehabilitation this can be rectified. Oral health is also important. If they find any cavities those must be treated and sometimes they require wisdom teeth / bad teeth to be removed. A serious infection, history of heart attack or stroke may also be a cause for concern. Dysphagia can also cause complications. For me personally, I had to have a deviated septum in my nose corrected before I could proceed.
It's not an easy assessment to go through but it is doable. The condition that caused my lungs to fail is Bronchiolitis Obliterans. I have had Rheumatoid arthritis for decades and this eventually caused my lung disease.
It is important to be fit enough to undergo the operation so please keep as active as you can. Eat healthy because post transplant what you eat greatly contributes to kidney health. Our kidneys take a serious hit due to the anti-rejection medication. Some of us will end up on dialysis or needing a kidney transplant at one point or another.
Right now though the important thing is to be well enough to get through the testing and qualify. Please, please ask your doctors as many questions as you can think of. Go into this with your eyes wide open. If you have any more questions for me I will happily help you.
Vest wishes to you.
Cas 🙋♀️🐕
hello mr blue
I have IPF and diagnoses about four years ago after a VATS biopsy.
I was offered tests for lung transplant , unfortunately my angiogram showed I had coronary artery disease and this would mean I would need a graft making me unsuitable for transplant.
I wish you well
Deborah.
I'm sorry to hear that you weren't a candidate for a lung transplant.
How is your health holding up beside?
I went for pulmonary rehabilitation assesment and while doing the six minute walk test my oxygen dropped to 84 so had to stop.
I have had oxygen delivered and also now have a scooter. Seeing my consultant mid April.
I wish you all the best.
Thank you and the same to you.
I have been under Harefield for a tx for two years. I went every six months for a barrage of tests, as Caspiana wrote, and a consultation with the team. However, as I have remained stable, orherwise healthy and improved my lung function I have been provisionally discharged! 🎉 I have copd. Harefield's cut off age is 70, most other units are 65. They usually wait untill your lung function drops to 20 before considering putting you on the 'live' list. With copd a tx will only improve the quality of life, not extend life. Other tx units may have different criteria.
Hi mrblue12, I'm 5 years post double lung transplant from Wythenshawe Manchester. Bit busy at the moment, but I will get back to you tomorrow. Hopefully answer anything you need to know if I can.However no two patients are the same, so it will be from my perspective.
Further to my reply yesterday. Is there anything that you want specific answers to, or may be a concern? If so feel free to ask and I will do my best to answer.
Hi Simplesprout,
I just wanted to get a general idea of what the process was like for people that have undergone the assessment.
I'm a relatively young guy, but I'm concerned that I won't be a viable candidate because of some health issues I have like varicose veins or a histamine problem that I have.
Did you have any other health problems that put your assessment into doubt?
Thanks.
Before any assessment i would think you will be asked to meet a transplant consultant for a chat. Its at this point you need to ask any questions or voice any concerns you may have. They will be able to answer anything you may wish to know before the process is taken to the next step. If things are OK then you will be invited to the couple of days medical screening.
The only problem that was discovered during my assessment was I needed a tooth filled.
(yep the screening is that thorough ) I was on full time oxygen and couldn't walk more than 20 paces let alone do a 6 minute walk test, but was still listed, I was 54 at the time.
Best wishes
Aspergillus post lung transplant.
