Seth had another visit to hospital today. Over the last week as the steroids have been cut down, he has developed the symptoms of graft v host disease again. Luckily this time the doctors are not allowing him to get sick and hospitalised. They have listened, taken note and are raising his steroid levels again. Seth has been getting nausea, lack of appetite, red hands, feet and ears and mouth ulcers. All the signs that his GVHD is about to take over again. His blood pressure is now well under control. He has been getting cramps in his feet and legs, he is getting bruising along his legs and feet and swelling in his feet also. This is causing him some pain, particularly at night and early morning.
As said in my previous post, Seth is having issues with his bones. Due to his symptoms, the strength of steroids and the length of time he has been on them and the need to continue with no end in sight, the doctors believe that it is almost certain that Seth will be developing AVN (Avascular Necrosis). To refresh your memory, this is when the blood flow to the bones stop - usually in the ankles, knees and hips. The bone then dies and cells come in and eat the bone away. The bones then crumble and they either need to be replaced surgically with prosthetic joints or if left, new bone forms incorrectly causing terrible arthritis. Neither of these outcomes are very enviable. Now for how they plan to help Seth: there is a drug they can give patients with AVN to prevent the bone eating cells from taking hold. They normally give it to people that have AVN. It is rare to give this to people before they have developed it. As Seth is what they called a "sitting duck" today. They have decided to give him this drug now in the hopes that when AVN hits him, his bones won't crumble as they are protected from the bone eating cells. Eventually, the blood flow will come back to the bones and what they hope will happen is that this will cause new bone to form over the dead bone and it should retain the shape of the joint and it is hoped that that will mean no arthritis or joint replacement. As with all drugs, there is a price to pay. There needs to be a dental appointment as it can cause problems in the gums. Also, it will make him pretty sick. He will need to be admitted to hospital for 3 days. He is likely to get a temperature and the doctor said he will get flu like symptoms. Not the man flu kind but the one that feels like you've been hit by a Mack truck. This is why he will be admitted so they can keep an eye on his temp and his reaction. Then a month or two later he will have a second dose of this drug, but he shouldn't have the same nasty reaction second time round.
So, big day today as he was required to have IVIG (blood product filled with immunity), long time spent talking to doctors and nurses and a lot to take in. He will be getting the fluvax next visit and we have been told to get the fluvax organised ASAP for ourselves and the girls. His dentist visit is next visit and two weeks after that, admission for AVN treatment.
