Hi all, need a little reassurance. My husband has just been to see the chest specialist regarding a couple of bouts of pneumonia over the winter. He is awaiting a kidney transplant and has dialysis 3 times a week. His original diagnosis was “Good pasture syndrome “ an autoimmune decease. He is 3.1/2 years on the list now, we were feeling quite positive, until this appointment. The specialist has told him he now needs a biopsy as his lymph nodes are quite large and they need to rule out cancer, another worry? Can anyone shed some positivity on this latest medical drama.
Sending positive vibes that the biopsy happens soon and shows no cancer, @Jenelliot! x
Hello. Wishing your husband good luck with his results. Is a 3 1/2 year wait the usual time to wait for a transplant? I have no knowledge or experience in this field. My lymph nodes were deemed to be enlarged a few years ago but, nobody appeared to think it necessary to investigate further. Hope all oes well Best wishes B
Hi Beanbag, thank you for a quick response. I really don’t understand how this was not mentioned before. He spoke with the consultant who is his main contact three weeks ago. He said all was well he checked his chest x-rays and all was good. This latest appointment was after an mri last week. The doctor today did say it could be related to the meds, although the card he was given by nurse reads lung cancer nurse. I’m confused. Waiting to speak with her. In answer to your question beanbag apparently 2-3 years is normal wait. He has been called 3 times to receive a kidney only for it not to be suitable last minute. We are north west of England. Hope you are doing ok, tough journey.
Thank you purple haze, me too. I am feeling deflated for him at moment. Fingers crossed.
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I can just imagine the scare that a mention of a ‘lung cancer nurse’ caused. I think that was bad and needed an explanation there and then. Fingers crossed all is well in that department. I would be confused as well. Chin up , we must all try to remain positive. My thoughts are with you both, Best Wishes B
Hi beanbag, I spoke with the nurse this morning. My husband went for a dialysis session last night ( after his appointment to discuss his mri) fortunately the consultant was there and told him it was nothing to worry about, probably inflammation and that he will be allowed to remain on transplant list, while the biopsy goes ahead. We feel more positive beanbag! I explained to the nurse we have had cancer in our family and is it not usual to have tests /biopsy first before the mention of cancers? I was disappointed that they left my husband with that information, and thoughts when the man is already at Rock bottom. I did get an apology, but some people live alone to deal with these issues and it is not good enough. All is ok for now, let us get on with the biopsy now. Positive thoughts!
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Hello. You are correct ,it is not good enough just apologising after a scare like that. It should not have happened in the first place. However, the indications are good, so you should both sleep better tonight. Right on…positive thoughts, Best wishes B
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