Parental Observations
“An observant parent’s evidence may be disproved but should never be ignored”, Lancet 1:688, 1951, Anonymous
“True weight” and prescribing medications…
“When Gary was younger the doctors would look at his weight and his height, and they were saying he is too heavy for his height and they were thinking something else was going on. Until we explained to them that if you look at him he is very small (no fat at all) and that his kidneys with the cysts were the cause of the weight and not the muscle or fat in his body. We realized that most medicines were given according to weight — and that they had to be careful with that because he could be given too much medicine because his weight was not true body weight — but cyst weight. Doctors usually go by what is on paper and do not sometimes consider other factors — it is like being book smart instead of street smart.” – from H.S., New York
“Even though your nephrologist thinks to adjust the medication dose accordingly, you still have to watch the prescriptions from other sources: i.e. over the counter medications, primary care doctors, anesthesiologist, etc. When Linda had the T.I.P.S. procedure done the anesthesiologist over-medicated her. Then when she had her first revision of the TIPS, the same thing happened. By the second revision I had wised up and told them she had a terrible time waking up and sick to her stomach. Could it be they were giving her the medication by weight and not considering the extra organ weight (enlarged kidneys, liver, and spleen)? They then took that into consideration and she had no more problems, awoke normally and did not get sick. I wish I had known this ahead of time instead of learning after the fact as I went along.” – from D.R., Michigan
On EPO injections…
“Gary gets EPO shots every day for 2 years. It took the doctors one year to inform us that there is the concentrated form where you only need a ¼ of what he would normally get. We use a gadget called GenJect from Genentech, Inc. You put the needle in and it butts the needle and medicines in within 3 seconds. Gary does it himself thanks to this little contraption. (There are others but they do not put the medicines in – you have to do that manually.) There is a little dial on top where the needle comes out and you can turn it to adjust how far the needle goes in. After a couple of shots you can judge where the dial goes for each type of needle. It would take a long stressful time to “get ready” for the shot – now he does not mind it at all and he doesn’t even feel it. Thank God for small miracles.” – from H.S., New York
“The medicine in the multi-dose vials is thinner then the single dose vials for some reason. Linda definitely knew the difference. The single dose stung and hurt and the multi-dose didn’t.” – from D.R., Michigan
