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| Good news?! |
| Friday, December 11, 2015 |
No JSK is not going to have a little baby sister or brother. :--P
I had my Nephrologist appointment today. He said what I sort of expected he would. In fact he was very funny about the whole thing.
Gross alert start
I have a lot of cysts and bigger sized individual cysts in my kidneys for my age. My largest is 5cms in diameter. My kidneys are slightly bigger, 1-2 cms bigger than normal size.
Gross alert end
If not for my mom's history and the fact that she is close to renal failure at 57, doctor said he would be reluctant to put PKD on paper. Apparently lots of people have cysts that they never know about. Most of the population develops kidney cysts past a certain age.
My cysts and kidneys are very very benign. As of now.
Phew!
Kidney has a lot of pumps. Blood flows into the pumps and small tiny waste molecules goes through while the rest is pumped back into the blood. This PKD gene is such that the pumps do not operate correctly. Hence when they pump back into the blood, it doesn't go to the blood stream. Instead molecules dont have an outlet and hence cysts are formed. Cysts are these fluid filled sacs on the kidneys. I couldnt help feeling fascinated by the genes. Genes are what determine how your nose, eyes, face, hair is. They also determine how our organs operate. Small anomalies are genetic. So fascinating! Our body is fascinating. Evolution is. Nature is, but lets not go there now.
There are various mutations of the gene. Some cause severe PKD, kidneys get incapacitated at 20 or 40. Some are benign and you will die before PKD kills you. Doctor said mine is most likely benign. Because both my grand parents are alive and kicking at 80+. I wish and pray my Mom will be fine too. I hope she doesn't have to go on dialysis. I hope and pray.
These are the doctors recommendations.
- Limit caffeine. Because caffeine is known to cause cysts grow bigger. It enables the pumps to be active all the time, Research has found this.
- Most likely my kidney function is normal. He ordered tests anyway. I will be doing them tomorrow.
- My kidneys are not touching any nearby nerves/parts. So all my back ache is really back ache. :--P - And all my fatigue is Vitamin D/Iron deficiency. Which I need to work on.
- PKD patients have a tendency to have brain aneurysms. Aneurysm is a bulge in the blood vessels, thinning of the vessels in certain places. Rupturing of a vessel is basically it bursting hence blood gushing out of the vessels. Not good. Not sure why. Apparently 10% of normal people have aneurysms in their brain. It just doesn't do anything to them. They can live with it forever. He wants me to get an MRI scan done. If they find an aneurysm, it is not possible to know if it is normal or because of PKD. So he will leave it and watch it if it is small. And if it is big he may get me operated! And he is mostly sure I will be fine.
- I can eat normally. Salt, sugar, etc. Darn! Now I have to really eat consciously. :--P My kidneys are mostly functional so I dont have to limit phosphorus etc.
- I can eat protein but limited. Animal protein produces nitrogen in the body which makes the kidney work harder to get rid of. Why make the kidney work harder than it needs to? I plan to stick to vegetarian protein.
- I dont have to get JSK tested right away. I can tell her when she is 18 and let her make the choice.
- Insurance gets complicated when diagnosed with PKD. Because there is a kidney transplant indication.
- Oh oh my blood pressure is an awesome 119/79. I saw 130+ for the first and last time, last time and I hope to keep it that way. My Amma used to have 160 :--(
- There are drugs for the disease but they do more damage than the disease. He doesnt recommend it.
- There are trials for new drugs and he doesnt want to put me on them.
- I can go back to the happy normal life I used to lead (!!) before I did the ultrasound and found out about this, it seems. Atleast for another 10 years. The cysts will grow as will the kidneys. I will have back pain. Sometimes a cyst may rupture and I might bleed into my stomach. Blood is apparently very aggressive outside its vessels. And it would hurt bad for a few days. And then life would get back to normal. For another 20 years?
Looks like I have put my entire medical history on this blog, I plan to remove it in a couple of days.
I will see a different doctor in January for cross reference.
Happy Friday!
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posted by SK @ 6:51 PM  |
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