I had a meeting with my consultant plus another who came down from the Brompton this week. I am pretty sure my lungs have been declared clot free but apparently I still have some. They are going to arrange a trip to the Brompton for an MRI and other tests and then possibly a trip to Papworth to have clots removed. I didn't ask much at the time and haven't been able to find much out.
Does anyone know anything about this procedure?
Not something l am familiar with but just want to wish you well. Xxxx
Yes. It is called Pulmonary Endarterectomy. It is serious surgery. They have to chill your body to slow everything down. Then they have twenty minutes to go into the pulmonary arteries and pull out the endotheliased clots, clots that have become embedded into the linings of the blood vessels. Then they keep you in a coma until they are satisfied that everything is working again. This can take a while, the longest was 42 days!! The outcomes are good. And improving all the time. Papworth is the only hospital in the UK that can do them and is third in the world for the procedure. They have done two in Holby City, but that is TV for you! They cannot do it if the damage is too far down into the microvasculature. They will sometimes do it for patients who do not have pulmonary hypertension, but usually they do it because they do have PH and are in danger of right heart failure. CTEPH (Chronic Thromboembolic Pulmonary Hypertension) patients are the only PH group who have a chance of a cure. I assume you have PH? I was assessed for it but they said my condition was not severe enough to do it. Also I do not — or did not then — have PH.
Please let me know how things go, I am fascinated by it and would love to hear more about your case.
All the best
Kate
That sounds horrific! Yes I have PH.
Well, no point in saying it's a trivial procedure. The surgeon who does it is David Jenkins. He wrote an excellent paper in 2012 about it, look it up. The focus of the paper vis more about the diagnosis of CTEPH, and how the scans "underestimate" the severity of the disease. He is insistent that patients be referred to his team. There is stuff about the op on the Papworth website. If it had been an option for me I would not have hesitated. But it is easy for me to say that, isn't it? It's quite demanding on the family as well.
k
Letter today from the brompton. I shan't be having the operation, too risky with the state of my health.
Happy Update .
Bronchoscopy
Pulmonary Fibrosis and Hydroxychloroquine shortage. 
Perifidone and the royal Brompton?
