Sep 15, 2017 Latest post:
Jan 24, 2018
Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting. Where to begin? As many of you already know, Mike is in need of a kidney transplant. We were caught completely off guard when finding this out, even though Mike has had kidney issues for the past 12 years. This was something that had been discussed at routine doctor visits as something that 20 yrs down the road we may be faced with. So, as some of you may be just as shocked as we were, I will attempt to fill you in from the beginning until now. During the end of our honeymoon in 2005 Mike noticed his ankles and lower legs were swollen and felt tight. When we got back home Mike followed up with his PCP and after a few visits for the same symptoms they decided to do another simple test. The results showed that something wasn't right with his kidney's and he was referred to a nephrologist. Mike was later diagnosed with Nephrotic Syndrome. His doctor was unsure what led to this because usually this is caused from having other medical issues and up until this point Mike had been a healthy 25 year old. From that point up until a few months ago Mike had tired different treatments. Mike was put on prednisone (a anti-inflammatory / immunosuppressant) to induce remission of the disease. Then because it was thought that his body was suddenly attacking his own kidneys as if they were foreign and he was put on a immunosuppressive drug (this drug is actually given to people after having a transplant to prevent the body from rejecting the organ). He was later put on oral chemo medication to lower his body's natural immunity, again to help prevent his body from fighting off his own kidneys. The last treatment option was Acthar gel injections which Mike gave himself or I gave him 3 times a week. This is not a steroid but it produces natural steroid hormones that help control inflammation. Some of these treatments worked for periods of time over the last 12 years, and his kidneys would appear to remain stable. There was actually a point where he was told that he was doing good and was in remission from Nephrotic Syndrome. This was great and we continued on like nothing was ever wrong. Mike had followed up with his nephrologist as needed and it was at those times that if he needed another course of treatment he would be put on something else. Fast forward to this past June. Mike had a routine follow up appt with his nephrologist. His nephrologist, who we love by the way, I don't want it to ever come across otherwise :), then decided that he wanted Mike to follow up with a kidney specialist in Boston just for another set of eyes to review his chart and discuss any possible treatment options. On July 10th Mike met with Dr Denker at the BI in Boston, it was then that he was told his kidney's were functioning at 12% and the only other treatment option aside from having to go on dialysis would be that he needed a kidney transplant. He was told that someone would be contacting him soon to set up appointment to start meeting with the transplant team.