So worried - spouse needs a lung transplant but he is so sick now

My spouse Robert was diagnosed with Sarcoidosis in 2010. He had been working in a foundry as a sandblaster using a paper mask and a welders helmet he was provided with. He was seeing a respiratory specialist in our hometown until 2016 when I asked that he be referred to Hamilton or Toronto. Robert was given Prednisone for over a year but it did not stop the progression of this disease. He was placed on oxygen at home...24 hours a day but his breathing continues to deteriorate. He was also given Methotrexate a few months ago but nothing seems to be helping. In January, the specialist he sees in Hamilton told him that he needs a lung transplant or only has up to 2 years to live. The doctor also said that he could not believe how much his breathing has deteriorated in the past year....I told him I have really noticed a decline in the past few months. The doctor then weaned him off of the steroid he was taking as he said it wasn't helping anyhow although he continues to take the methotrexate.

He became so ill in February that I drove him to the Toronto General Hospital where he would go when the time comes for him to have a lung transplant as I believed the doctors there would know best what was happening with him. He was admitted and underwent numerous tests. The doctors told us that they were working to bring him back to his baseline then he would have to return to his specialist in Hamilton to be referred for a lung transplant. Robert has Stage IV Pulmonary Sarcoidosis complicated by numerous cavitary lesions. 

?After being discharged from Toronto hospital we went for a follow-up with his specialist in Hamilton. The doctor had not yet referred him to the Transplant team but was going to do so. He explained that Robert would have to undergo a variety of preliminary tests that could take up to 6 months before he can even be placed on the waiting list.

?It has been 3 months now since we heard the news that Robert would need a lung transplant and despite my calling the specialists office - we have not heard of any appointments to begin these tests yet. Robert cannot even walk across the room now without loosing his breath and he is not able to perform even the simplest task. He uses his blue puffer constantly throughout the day trying to be able to breathe better however, it only helps for a short time before he is coughing so much that he throws up.

?Robert has just had a retina imaging test and we are waiting to hear from the eye specialist. He complains that his eyes are bothering him and he is starting to get headaches...something he has never had previously. Today he showed me that the skin on his arms are getting dry as well. 

?After our last appointment with the specialist in Hamilton we were told to make a follow-up appointment for 2 months. I asked him if he could tell us what Roberts chances are as I don't want him having to suffer through numerous tests and not make it through to receiving a lung transplant. The doctor said that he has to have a positive attitude and follow all instructions re tests he is to go through, etc. The percentage of people who make it through the first year of waiting for a lung transplant was very low...I cant remember the exact figure as I was in shock and so worried. Robert has developmental difficulties as well and today he was feeling so ill that he told me he was dying. I cant see him being able to be strong enough to pass the psychological tests he will be put through. 

?The specialist just doesn't seem to give us straight up answers so that every time we leave an appointment...I feel as if I am still in the dark about how bad Robert is and what to expect. 

I just needed to put this out there for others to read...I am so worried...

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