Well, here I am again. I was hoping it would be a while till I needed to post here again but I was wrong. If you’ve read my last post you will know that we’re we’re going to do a gamma knife to get rid of 2 avms in my brain. The surgery was scheduled for April 20th, about 2 days ago. A week before the surgery was scheduled I went in for an mri and blood test. The results showed that my hemoglobin is higher than it used to be (it is now 220), and they needed to do another blood test the Monday before the surgery. We also had a couple more appointments with Dr. Ratjen and Dr. Dirks. After they took 9 viles of blood, all of my teams including neurology, hematology, all the lung doctors, and the transplant team had a very large meeting about the surgery. They decided that the angiogram that goes along with the gamma knife was too risky and they were gonna do it without said angiogram. They then decided it was too risky all together and canceled the surgery. During our meeting with Dr. Ratjen (who usually seems to not show much emotion), he seemed very worried, and upset. He told us I was the sickest patient in the country, and there are only a handful of people like me in the world. He also said that at this point a lung transplant is required and that my chances of living are better with the lung transplant than without, meaning that if nothing is done I have only a 50% chance or less to make it 5 more years. This has all kind of put me in shock, but I think I’m ready to accept it and put myself on the list for new lungs. Lucky for me I’m otherwise very healthy, and according to multiple doctors in the hospital I have the best transplant team on the planet. More updates are to come. Thank you for reading.
I am disappointed to hear this, and certainly has to be difficult for you. As you say shock. It is good you are able to put it out to us, and know we are with you. Your outlook, in such a fact based, matter of fact manner will certainly be crucial and am sure vital in being ready to accept and be put on the transplant list. Your medical team sounds top notch, and has to be reassuring. Hopefully our community is able to lend support. Take Care, John.
May I ask what is wrong with your lungs? Do you have HHT? I’m so sorry. It must be very difficult. Will be sending healing thoughts and prayers your way.
Thank you. The support means a lot.
I have severe hht scattered throughout my lungs and I have 3 avms in my brain. One was removed 4 years ago and the removal of the second and third ones were canceled. Thank you for the thoughts, it means a lot to me.
I’m just going to say “Wow!” again!
There are a couple of ways to deal with this kind of news – by getting really down about it, or by getting really quite pragmatic about it – and again you’re working on the pragmatic end of the scale, which is (frankly) brilliant and amazing.
And I know you’re a young person.
So… I think you’re doing amazingly. It’s really quite the diagnosis, isn’t it? I do like the fact that your doc was very put out about having to tell you difficult news and I’m sure you are in just as rare a circumstance as they describe. It is also great that you’re otherwise nice and healthy.
My niece has cystic fibrosis. She’s a few years older than you: I think she’s 25: and has stared down the gun barrel of CF all her life, with the prospect of getting very poorly and eventually needing a heart/lung transplant. It’s a tough, tough situation to be in and I take my hat off to both of you. If you find you need the support and experience of others who are faced with similar trouble, it may be of value for you to seek out a CF support group and be able to talk to people there: I assume it is a much more common condition than HHT and there should be support groups near where you live.
Thank you for sharing. It’s great to learn about you and how you’re getting on. Do join the PulmonaryHeartHHT group here (look for “Groups” on the Ξ menu). Joining the group means you get notifications of first posts in this category.
Very best wishes,