1/19/10

1/19/10 Well Joe has been doing pretty good for the last week his complications from the shingles have subsided, still having some nerve pain but nothing compared to when he first had the shingles. One more month and we go back to Boston for testing and to see if Joe is in remission we both are very nervous, but hopeful that we get good news. Please keep praying that Joe gets a complete response from his treatment. The doctors here are going to continue to monitor Joe's liver and spleen but dont feel it is anything we need to worry about. Blood pressure is still very low which is causing the dizziness. Hopefully Joe is turning the corner and on his way to feeling better. We love you all and God Bless.

1/03/10

1/03/10 Sorry if my last update was brief, some days are harder than others and I think it was tough with the holidays coming up an having Joe so sick. He has started feeling a little better the last couple of days which is good to see him actually up and having some good days again. So he has had some complications from the shingles, the shingles themselves have gotten better he only has a few left that need to heal the nerve pain is much less than it was. But where he had the shingles like I explained in one of my previous post was in the perineum region which on a male runs the distance between the anus and the base of the penis well the shingles follow a nerve path and effects parts of the body that the nerve path controls. Well it effected Joe's bladder and this caused urinary retention, so Joe was unable to urinate on his own and had to have a catheter inserted in order for him to urinate. He left the hospital with it still inserted we were hoping he would of been able to urinate on his own within a few days. We had to follow up with a urologist after a few days, well after removing the catheter (which they had me do six hours before the appointment) they tested his bladder and it still was not functioning. Well we left there with a big box of catheters and instructions on how to self cath. So this was on December 14th and Joe had not urinated on his own since the 9th. We have been doing the catheter since then 4 to 5 times a day until this weekend Joe has started to urinate partially on his own he still is not emptying all the way so we still have to use the catheter a couple times a day but we think hopefully in the next week it will come back totally they told us it could be 4 to 8 weeks. So this is where we are at with the shingles. Joe started having severe stomach pain the week before Christmas so they sent him on Christmas eve for a cat scan of his abdomen and pelvis area and what they found was that his spleen is enlarged, they also found that the lesions on his liver has have changed in density and size. Joe had the liver lesions before we left for Boston and they wanted to biopsy them but when we got to the hospital they were unable to do the biopsy due to his bleeding issues. So now he will have to have the biopsy done. Also with the enlarged spleen we are waiting to talk to the doctor on Wednesday to see what needs to be done with amyloidosis and factor X deficiency there is always a chance that spleen will need to be removed. So we wait to see what will be done with these two new issues in the mean time they increased his pain meds. Well like I said Joe has had three good days in a row so hopefully he is back on track to feeling better. Just want to remind everyone to keep praying that in February when we return to Boston Joe will be in remission and we get good news that he has had a complete response to his treatment. Please remember there is no cure for primary amyloidosis there is only remission and we can only hope and pray that Joe gets a complete response from the treatment. Also remember that amyloidosis is one of the most undiagnosed diseases and anyone can get it though it is rare and only eight people out of a million are diagnosed, that is about 2400 people each year in the United States they say another 4800 go undiagnosed and it is usually discovered during an autopsy. For more information on this disease please go to www.secureharbor.org and read what the symptoms are they also list other websites you can go to for more information. Well God Bless and we love you, Happy New year to you all!