First Month Checkup

The good news is that Dave and I were much more prepared to speak with the nephrologist this time around.  Logan's blood pressure is still too high so we are upping the dosage starting tomorrow.  Here are the questions we asked him:

1. How bad is his condition: The size of his kidneys are more than 2 standard deviations away from the norm.  The number of cysts he has in each of them is too many to count.  How severe is it on a scale of 1-10? 5
2. Due to the size of the cysts and the number is there scarring? How do we test for this?  There is no way to know how badly the scarring is without a biopsy.  We are not performing that test.
3. We read between the ages of 2-4 the kidneys can stop growing causing function issues as he grows.  How do we know if his kidneys have stopped growing?  The ultrasound will be done to compare size every six months.  It has been said that the liver can also be impacted along with other organs.  What can we look for as a symptom of it spreading? The ultrasound will be a complete abdominial scan and will be looking for cysts in other organs.  If found, this is an indicator that the form of the disease is dominant and not recessive.  Currently all symptoms for Logan point to the recessive version. 15% of all PKD dominant cases are spontaneous genetic mutations versus inherited from a parent.
4. When do we need to start thinking about a donor? How does donor testing work? 30% of kidney function is when we will begin discussing the donor testing process.  Insurance companies will not consider paying for a transplant until the patient is at 15% kidney function. "That's stupid" The process consists of multiple steps:
1. Must be 18-50 years old
2. Being a blood type match
3. Being a tissue type match
4. healthy person:
1. no smoking
2. no diabetes or other diseases
3. no obeisity
5. CT Scan of vascular makeup
5. What should we be looking for as indicators that his kidneys are starting to lose function? Swelling in various areas of the body, blood in the urine, reduction in need to go to the bathroom and urinary tract infections can become common.

I realize this is long and if you made it to the end thank you for reading and caring about our little Logan.

Dave and Ann test results

Neither Dave or myself appear to have the cysts. We have Logan's blood pressure test next week.if the blood pressure has dropped there is a likelihood the cysts growth will be managed.

Best possible news.

Logan came back with all normal bloodwork. This means he has to be monitored once a month for high blood pressure, once every six months for bloodwork, and once a year ultrasound. I am surprised at how thrilled I am that we found this so early. The last few weeks have been tough. I truly appreciate everyone's kindness and best wishes. I have my test on Thursday morning. I will post one last time after mine and then update next month after Logan's checkup.

The wait continues

Sadly No news today. Called three times. Left a voicemail. Nothing. Trying to tell myself it doesn't mean anything.

Waiting game

We got news on Friday that one of the three blood tests came back normal.  we find out the rest on Monday.  He seems to be in such good spirits.  we are hopeful all turns out normal.  If this is the case then he will only need to have monthly high blood pressure tests and quarterly bloodwork done to ensure things stay the same.