Any disease I suppose places a lot added stress on your close family. There are a lot of things to contend with. I think the overriding sense from family is helplessness. There really isn’t anything anyone can do to help. They can give emotional support and fetch and carry medication or whatever you need. But that’s where it ends. That kind of help is no doubt very valuable, but one always feels like one wants to do more. I used to be the one on the sidelines of my Sister’s infertility journey, I so wished there was something I could do, but there wasn’t. All one can do is cheer the person on and give support where needed, and hope for the best.
During my sickest times, Pete could fetch and carry things for me, but there was nothing he could do to make me feel better. I really thought life on dialysis was going to be THAT awful all the time! Luckily my Nephrologist realised my solution was too strong and lower my dosage. Landing up in ICU is not my idea of a good day! Things have stabilsed for me now. I’m not dizzy anymore, my blood pressure is finally normal. It used to be so low I couldn’t stand up.
Although I really still hate dialysis, it’s so much better for me than getting up at 4:30 in the mornings to get ready for the 6:00 am shift. And then to deal with grumpy staff and noisy machines. I used to get severe tachycardia (racing heartbeat) on those damn machines, and my blood pressure inevitably dropped too low time and time again. It was such a relief to get off heamo. I don’t think I could have done that for much longer.
One of our fellow patients died right there in his heamo bed one day. Heart attack. Boom he was gone. Shocked us all quite a bit. Then a few weeks later another fellow patient almost died. He lost conciousness and his breathing was very erratic, all the staff jumped around trying to revive him. Thankfully they were successful. But gave us all a huge fright again.
It just goes to show how fragile our bodies really are. When I told Pete and my Sister what happened they were really unhappy about that. Both of them felt I needed to get off heamo as soon as possible. Which I did. Doing PD is much easier on a person’s body, it’s not nearly as taxing as heamo. I would really recommend renal failure patients to try PD before just going for heamo dialysis.
When my Sister and her husband comes over for a braai or to watch the rugby and it starts getting late, I just attach myself to my ball and chain (PD machine) and carry on chatting. It’s not a big deal anymore, my mobility is a bit hampered, but because it’s on a trolley I’m really not stuck. I wheel it around everywhere.
I know my family and my dear friends cannot wait to see me free from this prison, and their support and love and kindness means so much more to me than any words can describe. Pete is my anchor, he is the most patient and helpful husband, I am truly blessed to have him. I would not want to do this without Pete and my family and my dearest friends. Without their love and support I would not be this happy during this stage of my life. I am so thankful that God put them on my path.
My friends and family are my support system. They tell me what I need to hear, not what I want to hear and they are there for me in the good and bad times. Without them I have no idea where I would be and I know that their love for me is what’s keeping my head above the water.