New Joe Update

[wgoforth]

I apologize for not having more updates, but there just hasn't been anything dramatic to occur since coming home. Some of this may
be a repeat for some of you, as we don't know who knows what and we have sent the info out in various bits.
We have gotten him setup with a local cardiologistwho is to be the eyes and ears on the ground for the Drs in Dallas, doing simple
re gular blood tests and EKG's and checking his defribulator locally without always having to drive 4 hours to Dallas. Also he has been having home health
2-3 times a week. They clean and dress the port where his lines go in his chest, check heart rate and blood pressure and a test that measures the thickness of
his blood for adjusting his blood thinner.

He has been going to cardio rehab twice a week. It is monitored cardio workout involving treadmill, elliptical and stationary bike.
The first time he was dizzy afterwards, but found it was due to his blood pressure being too low due to his blood being too thin. Standing it would drop
to 70/60. Upon decreasing his dosage of the blood thinner, he has had no more problems and the Tech has said that he can begin some light weights next. He has to plan where he will be at certain times due to having to replace his I.V bag and batteries for the pump every so many hours. Each week he receives a FedEx Overnight box with his I.V. bags chilled in an insulated container along with other supplies that Home Health needs to use on him.

He is to go back to Dallas in early June and then in August. He goes to Dallas every other month, and to the local Dr the other
months. In August he is to have another echocardiogram to see if his heart is improving or just the medicines making it work, as it is a heart stimulant. We
are anxious to see the results of this. It is still very possible that he may have to have the LVAD (heart pump) at some point, but so far he appears to be
doing decently. Here is a Today Show interview that had the same condition as Joe (Viral Cardio-myopathy) and had the LVAD.

http://today.msnbc.msn.com/id/37354143/ ... /#37354534" onclick="window.open(this.href);return false;

Apparently this has only been used in non-test cases for the past three years, and Baylor has done the majority of the early ones. We feel very fortunate that he was at the right place for his treatments. I have heard cases of these patients slowly getting better, and cases where the patient seemed to do well then overnight theheart failed the rest of the way. So we can never feel fully secure in this.


We had not realized that his story was picked up by UPI and has been in newspapers and medical sights around the world,
http://www.upi.com/Health_News/2010/04/ ... 272600720/" onclick="window.open(this.href);return false;


He is now back to driving. Because of all of the Dr appointments, it doesn't seem feasible for him to return to Tarelton this fall,
but he plans to go to Howard Payne University here in Brownwood for at least the fall semester and play it by ear. The 4-H Foundation notified him that they will
make an exception in his case, and let him continue his scholarship at another school even though he had to drop out of Tarelton (which normally would have
permanently terminated his scholarship).

He is still trying to find what he can eat and what tastes ok without salt and what spices he can use to make things palatable. He
decided to go fishing one morning and enjoyed being out for a couple of hours outdoors by himself


With help of the brethren, we have been able to convert our extra room which had been my office and Gina's sewing room into a
bedroom for him. The brethren worked together for us to convert a storage room at the church building into an office for me, and I am currently moving my
things into there. That will be better all around.


I have been asked about finances. He currently has Medicaid which is covering everything medically except for his cardio rehab
which is minmal in cost. This expires though in October, and unless he is ruled disabled, will not be able to continue the medicaid. He has applied for
disability, but Social Security has said that it will take 6-8 months IF there are no problems. If we have to get a lawyer (as I am told you have to 50% of the
cases) then that's another story. In a worst case scenerio, we can get him enrolled into the Texas High Risk Pool insurance which will run close to $800 a
month, but will cover him from day one. Considering his monthly prescriptions alone are over $10,000 per month, that is cheap in comparison. Only hitch is
that he is still on the heart transplant list. These run around $500-$600,000 and the insurance only pays the first $300,000. So we hope he can get set up for
Medicaid to continue. Thus the main expenses we have extra are his special diet; the extra trips to Drs and hospitals (gas; meals, etc); and just the normal
added expense of a child moving back in (which we are delighted to have this as a "problem").

As for money that has been sent, it has been used to offset our living expenses in Dallas for three weeks; the conversion of the
work room into his bedroom; the cardio rehab; some expenses of his (clothes...he lost 40 lbs and has only put back on around 5; vehicle repair; insurance, etc).
The rest has been put into a reloadable credit card that will be used for expenses related to him.

Thanks to everyone for your continued thoughts and
prayers.
Wayne