Pulmonary Hypertension Journey

I have no idea where the time went. We spent about the better of 3 weeks of it in and out of the hospital with infection in Steven's line. First in May; they put in a picc line. We went home after about 4 days, and he spent a week on antibiotics. 3 days after the antibiotics were done... BOOM, fever and heart rate of 170. So BACK to the hospital we go... the end of the picc line touched the Hickman when they inserted it... and BAM the infection was transferred. So after about another 4 days up there and the insertion of a midline in his other arm we went home to be placed on 4 weeks of heavy antibiotics... cephapine and tobramyacin (sp????)... Steven started to feel like his equilibrium was off a bit and his ears were popping so we stopped the Toby 3 days early with the blessing of the doctor. Went in for cultures the following Monday and WHAM... KIDNEY FAILURE because of the toby. Less than 10% of the kidneys were functioning. They started pumping him with fluids which is dangerous because of his CHF, but he did not retain any of it and the kidneys have now returned to normal. 

I am so thankful to God but feel so beat down. It was like, give us a break here, and please God! Give STEVEN a break. He doesn't deserve this! And then I started feeling so damn selfish because he had people to help take care of the farm and chores while we were gone all those times. But every time we returned, there were always the dishes, laundry, and yard that needed to be mowed. I'm not mad at Steven; I just feel overwhelmed and don't know where to start sometimes when things get backed up. And now school is starting next week, and my classroom is in disarray because of new carpet and computer desks, so I have a lot of stuff to do in at school as well. 

I hate this disease. I hate how it interrupts people’s lives like it does. It is so awful and people just don't understand it. I wish I knew how to make them understand! Again I will try to write another letter to the editor during Awareness Month to at least EXPLAIN the disease. Our doctor tells us we could pretty much start our own support community with as many people who have it around our area. Isn't that lovely... MANY people have this "RARE" disease. What the f-ck?

I'm sorry; I know I haven't written in a super-long time, and I'm sorry that all I did was vent and complain... hell, pretty much just bitch!