There are a lot of things that I have considered so far. Firstly is how much people really care about me. My entire family has been very, very concerned and loving about this. I think they're more scared than I am! I really appreciate their efforts (taking my husband and I's names to the temple, praying and fasting for us, researching the disease, and sending me informational links.
Second, I considered what effect this would have on my ability to get pregnant. It's weird how you don't really care about that until there is a possibility you won't have it anymore. Turns out, it is generally okay unless you develop high blood pressure (which happens). It's considered a high-risk pregnancy and they recommend genetic counselling to prevent passing it on to your kids.
Third, I considered my mortality. Depending on the site you look at (oh internet...), I have a significant or 40% chance of developing brain and/or heart aneurysms. Those seem really scary. I guess if I die right away though, it wouldn't hurt! Some people don't have the luxury of a painless death.
Fourth, I've already been told to start going to church in order to be healed. I believe that faith-healing can work and there is no harm whatsoever in asking for help, strength, or healing from God. However, I'm quite sure this is not some form of punishment for not going to church. I think people who don't go to church can be healed and helped just as much as those who do. Anyway, I'm just concerned that this will be exploited to help whatever agendas - be it science or religion. It's simply health, and it's simply a genetic mutation. These things happen. If I pray really hard and die, it's not God's fault. If I don't pray and get healed, it could very well have been achieved with the help of my family's prayers and fasts.
Fifth, and least concerning is health insurance and paying for this thing.
Anyway, I just want to thank you all very much for your help and love! I appreciate it!
Wednesday, July 31, 2013
Tuesday, July 30, 2013
Update: July 30th 2013
So, I went to the doctor for my first follow up!
Here is what I learned:
1: My kidneys are disgusting.
When you Google this sort of thing and look at the pictures, you see some really disgusting stuff. Most of what I saw were some black cyst-covered kidneys. They looked wrecked! Well, I found out today that mine look just like those (on a smaller scale).
Seriously! The largest one is on my right kidney. It's 3cm. My kidney is 12cm. That's right. 1/4 of my kidney is a cyst. The left kidney has one about the same size, but that kidney has enlarged to 14cm. The findings say: there are too numerous to count varying size cysts scattered throughout the renal cortex bilaterally. The largest cyst on the right is in the 3cm size range. The largest cyst on the left measures approximately the same. Several of the lesions are complex with septations. There is no hydronephrosis. The right kidney measures approximately 12 cm and the left kidney 14cm.
Here is what I learned:
1: My kidneys are disgusting.
When you Google this sort of thing and look at the pictures, you see some really disgusting stuff. Most of what I saw were some black cyst-covered kidneys. They looked wrecked! Well, I found out today that mine look just like those (on a smaller scale).
 |
| I'd post one to save you time, but you may be eating. Here's a puppy instead! |
Septations meaning walls within the cyst - that usually indicates a higher chance of them being cancerous.
Hydronephrosis meaning water in the kidney.
I saw the scan myself (with the doctor). There were cysts everywhere. It was seriously gross.
There is no cure. There is no way to slow the growth and progression of the cysts. One day, they will replace my kidney tissue and I will need new ones or dialysis.
That's all for this update! Thanks for reading! I will do my best to keep you all posted.
Hello!
Hello there! I made this blog so I could more easily communicate what's going on with my newly discovered PKD!
It all started last April, when I began getting weird bowel problems. The problems persisted and more symptoms appeared and progressively got worse. After a colonoscopy and many, many doctor visits, one decided to actually look into my problem instead of dismissing it as "not enough fiber" and period pains.
Thus, my PKD was discovered on July 26th 2013.
As you could imagine, it was very left-field and unexpected. It is apparently genetic and, if it is traditional, my siblings each have a 50% chance of also having it. There is a 10% chance that I am the first mutation and none of my family has it.
So anyway, here it is! Welcome and enjoy...I guess :)
It all started last April, when I began getting weird bowel problems. The problems persisted and more symptoms appeared and progressively got worse. After a colonoscopy and many, many doctor visits, one decided to actually look into my problem instead of dismissing it as "not enough fiber" and period pains.
Thus, my PKD was discovered on July 26th 2013.
As you could imagine, it was very left-field and unexpected. It is apparently genetic and, if it is traditional, my siblings each have a 50% chance of also having it. There is a 10% chance that I am the first mutation and none of my family has it.
So anyway, here it is! Welcome and enjoy...I guess :)
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