Tuesday, November 6, 2007

Not Something I Want to be Posting About My Child.....

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But November is Pulmonary Hypertension Awareness month. Basically Pulmonary Hypertension is high blood pressure in the lungs. When Rhett was born he had only three chambers of his heart, a valve that was not formed right, another large hole, as well as one of the arteries going to his lungs that was almost completely closed off.

When one small boy has all of these issues, then his blood does not go where it should. Before he had his open heart surgery at 4 months old, alot of his blood went straight to his lungs when it pumped, rather than to the rest of his body like in a typical person. This caused his blood vessels in his lungs to enlarge. Once his heart was fixed, and the blood pumped where it should, those vessels did not get all of that extra blood anymore, so they started constricting. Now it became extra hard for his blood to pump through these constricting vessels, thus causing high pressures in his lungs.

His heart has to work extra hard to get a sufficient amount of blood through these vessels. In turn, with the heart being a muscle it becomes enlarged, but only the right side. It eventually works so hard, and becomes so enlarged that it fails. There is no cure.

However there are many treatment options, and one can live a fairly good life while being treated for Pulmonary Hypertension. There are alot of different options out there as well. Oxygen is one of them. The more oxygen you get into your system, the less the heart has to work. There is also a bunch of medicines that you can take. Both orally and intravenously.

Rhett is on oxygen at night to help those vessels relax so that his little heart doesn't have to work so hard. He also is on Norvasc, (or Amalodipine) which is a calcium channel beta blocker to help lower his pressures. This only works in about 10% of PH patients. He is also on Prevacid for silent reflux. This in itself can cause higher pulmonary pressures.

This little cocktail of treatments seems to be working well for him. His pressures have gone down, and his heart is on the "larger" side of normal, rather than significantly enlarged.

I have just joined a new message board that is specifically geared toward Pulmonary Hypertension. I have wanted to make sure that Rhett is getting the very best care that he can. Thus far his cardiologist has been addressing all of his PH issues. But after speaking with some wonderful people from this board, I think that we are going to see a specialist.

With that comes the fact that there is not a pediatric PH specialist in our state. The closest one is in Denver, and I hear that he is a really good doctor, one of the best. Rhett definitely deserves the best. I have not discussed this with Medicaid, but I am hoping that they will pay for this Dr. I am working on getting a case manager to help with this. I am not sure about the rules in our state for traveling to see a specialist, but even so if they will not pay for it, then we will find a way to get there.

As I said before Rhett deserves the best.

So if you get a chance this month, wear the color purple for a day. Wear it in honor of Rhett and the many other people out there who suffer from Pulmonary Hypertension, and pray.....pray that some day they will find a cure.


Colleen said...

I have been on Medicare/Medicaid for years. My PH specialist is out of state for me, and so far everything has been covered between the two. I truly hope Medicaid will help with an out-of-state specialist for Rhett! I think it's Dr. Ivy you'd see? I know several people who are so happy with him! Good luck with all this!
~Colleen :)

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