04/15/09 Follow up visit

Ron had his follow up visit post hospital stay on Wednesday. Ron is battling bronchitis so she prescribed an antibiotic and nebulizer. They both seem to be helping tremendously. The appointment was pretty routine. We are doing a slow taper of his steroids back down to probably 20mgs. The most notable part is that his doctor wants us to go visit the Cleveland Clinic. The experts on this condition are located there. There has been a doctor with the clinic consulting on his case since the beginning however his doctor thinks it is time to actually go. We aren't sure when, but probably in May sometime. His coordination and speech are almost back completely to normal, however some of the residual balance issues can be attributed to the fluid in his ears from the cold. We go back in 3 weeks for another follow up. I will keep you posted. Thank you all again for the positive thoughts!

Update on Ron

Ron was released from the hospital on March 27th after spending 6 days in the hospital. They did 5 days of high dose IV steroids and put him back on the oral chemo. He has a small amout of coordination issue on his left side but that is improving daily as is his speech. We won't know for another week or two the extent of any long term effects from the newest strokes. I am already noticing some new changes in his personality however I am sure a lot of that can be attributed to the higher dose oral steroids. I will update again after his follow up visit with his doctor. Thank y'all again for all the positive thoughts and encouragement!

March 23,2009

Ron is back in the hospital. His symptoms started on Friday the 20th. He fell a couple times and was a little confused. He had to wake up early for work on Saturday and he fell a few times getting ready for work. There were a few other symptoms and Ron left work early. When he got home I asked him if he thought it was time to go to the ER and he agreed. We got to the ER and they immediately started with blood work and withing half an hour they were taking him back for a CT scan. The doctor came in a short while later and said that there were new stroke lesions on his brain and he was going to be admitted. He was finally put into a room early Sunday morning. He also had an MRI done on Saturday. The MRI confirmed 5 new strokes and a very high level of inflammation in the brain. The inflammation number should be 5 or less. His is 45. They started high dose IV steroids and chemo. This was all triggered by the tapering of his steroids. Obviously he is going to be on it longer. He was already showing improvement withing a few hours of the steroids. They are doing an angiogram Monday morning. He will be in the hospital until at least Wednesday. Thank you again for all of you love and positive thoughts. I never would have made it thru this battle with you ya'll! I will keep you posted!

August 14, 2008 Update on Ron

I apologize for taking so long to write an update but we have been very busy with moving and everything.
We went to the doctor last week. She told us that Ron's MRI from June showed a lot of improvement in the stroke areas and there were no new strokes. His spinal tap results were also good. His protein levels and his spinal pressure levels are all down, inching closer to normal. We started tapering his steroid last week and have seen no ill effects so far. The doctor is having us taper 5mg at a time unstead of 10mg. He will have another MRI in 6 weeks or so to make sure that his body is tolerating the lack of steroids and their are no new strokes. Once he gets down to 10mg or less of the steroid, the doctor said he can go back to work. He is super excited about that prospect. He will continue taking the oral chemo for an undetermined amount of time for now. He will be allowed to work while on the oral chemo.
He is feeling pretty good and is enjoying our new apartment. Neither of us have ever lived in an apartment so it is an adventure. He really enjoys the swimming pool and the workout room. Thank you so much for all of your support. I do not know what we would have done without all of you behind us.

March 24,2008

NO CHEMO INFUSION TOMORROW! The doctor just called and after conferring with Ron's other doctors they have decided to not do another infusion and instead start him on the oral chemo medication. They will also be trying to schedule the spinal puncture this week. Needless to say, Ron is THRILLED to not have to go thru another infusion tomorrow! I will keep you posted!

Pictures From our New Mexico Vacation

Wanted to share some pitures of us

March 23,2008

I wanted to post a little update for everyone. Ron had a MRI/MRA done on March 11th. The doctor called that afternoon and told us that the radiologist had located 2 new tiny strokes, less than 4mm a piece in size. The doctor was concerned but not overly so. We hoped Ron was finished IV chemo but the doctor has ordered at least one more, which he will receive on Tuesday March 25. The doctor has also requested we get a second opinion from another Rheumtologist. His doctor has never had a patient with this disease and she wants another set of eyes to look at his case. The doctor wanted us to go to the Mayo Clinic in Cleveland to consult with the experts on this condition. However we have decided to go to a local Rheumo first and then if they still feel it necessary, we will go to Cleveland. The doctor also wants us to make a decision about Ron having a brain biopsy. Before that though, the doctor is conferring with Ron's neurologist about getting another spinal puncture done to see how his spinal fluid looks. We will be meeting the new doctor and have the spinal puncture done sometime in the next few weeks. Ron will also have another MRI/MRA done towards the end of April. Ron has been feeling pretty good and is improving each day. He was hoping to go back to work at the beginning of April, but now we are not sure when he will be able to.
In happier news, we just returned from a week long vacation in Ruidoso, New Mexico. Ron's mom has a house there. It was Ron, his mom, his brother and I. We had a blast and actually had the chance to relax and enjoy ourselves. We had planned the trip to celebrate the end of chemo but it was a wonderful trip regardless. I will write again soon. Thank you so much to everyone for your positive thoughts and prayers!