Just wanted you all to know how Den is doing right now. He is OK. He has good days…and then he has really bad days.
The really good news is that since the LVAD surgery, Den has had no shocks from his Pacemaker/ICD. I dread the day he does.
He has no cartilage in his knees, so walking is very painful. We have tried cortisone injections, they only give him relief for about a week. We have tried off-loading knee braces, they give him no comfort…he actually has more pain when wearing it than without. He was scheduled to have knee replacement surgery before all this started, but it had to be put on hold due to risk factors and finding a doctor willing to do the surgery with the LVAD. No an easy search.
Den had a RAMP done in February. You could call it his 50, 000 mile check up. The procedure is done thru the right jugular vein. They insert a sensor and then change the speed on his pump. They measure the pressures at each setting until they find the best one. After his last one, we had lots of issues with daily dizziness. The LVAD team reduced his speed at his next appointment and we thought we were done with the dizzy’s.
We have always monitored Den’s weight…for the last 16 years. This is our first warning sign of problems. If his weight goes up more than 2 pounds in a day, diuretic pill to be taken or an extra one if necessary. If he drops more than 3 pounds in one day, we hold the diuretic to prevent dehydration and the dizziness and pump fluctuations that go along with it.
For the last week, Den’s knees hurt all the time. He takes Tylenol like tic-tac’s (every 4 hours). The team is trying help us get something done about this, but it is difficult to get some doctors to listen. We have also been walking that fine line between dehydration and too much fluid in his system. It seems that he can be fine..no dizziness…one day and the next, without any med change, dizzy all evening.
Sometimes it seems we run, hop and skip thru the days and sometimes we limp, crawl and claw our way thru. We never quite know what the day will bring, but I can say, Den is never boring…he always keeps me on my toes.