Re: hello friends

[Guest guest]

... your last line really hit my heart, talking about how you and your son miss playing together. I also miss what I cannot do anymore with my great grandkids. They don't really understand. How old is he?

I think I'm looking at a right heart cath. as well. I'll see the cardio-gal on Thursday and will know then.

I too get sick and tired of being sick and tired!

Love,

MamaSher; 71, IPF 3-2006, OR.Don't fret about tomorrow, God is already there!

hello friends

Yesterday I had an appointment with a Pulmonary hypertension Specialist and his team in New Orleans, Doctor Bennet De Boisblanc. I got good news and bad news.

The good news is that I may not have Pulmonary Hypertension, the team of doctors that evaluated me yesterday think that there is not enough evidence to confirm I have PH, they want to do a Right Heart Catheter, to find out if indeed I do have PH.

In the EKG's it shows Right ventricular systolic pressure is at 35 mmHg, (this is the blood pressure going from my heart to my lungs). this pressure seems to be in the upper normal level. Considering that 27 mmHg is normal pressure and 41 mmHg is severe.

The PH specialist told me that most of the times the EKG overestimates the pressure by 50%, the only way to know for sure which is the real pressure is by doing a Right Heart Cath.

They told me is an outpatient procedure and I should not be afraid, ( I am scared already) The procedure takes about 30 minutes. I may have this done next Monday.

Also good news is that they do have Lung Transplant services at Ochsner New Orleans, that means that in case I need a transplant I don't have to go all the way to Houston to have one. Still we want to keep that appointment with the transplant specialist in Houston, on Nov. 30th.

The bad news is that they think that my shortness of breath is due to the increasing of honeycombing (fibrosis) in my lungs. this means that my scleroderma is progressing rapidly.

yesterday was a really difficult day, my blood pressure was 99/55, very low, and they made me walk for 6 minutes to check my O2 levels, well it didn't drop too much, I was walking slowly on 4 liters, when I finished the test I was out of breath, had fast heart beating and pain from my knees down. Also my feet were freezing. While walking my heart rate went up to 101 and my oxygen went down to 95. I was so tired I could have gone to sleep right there.

Hopefully the whole team of doctors will help me to get better. I am tired of been tired, I don't want to be sick anymore. I want to dance Salsa, Tropical, Rock but most of all I want to be the play mate my autistic son needs, he and I miss the days when we use to play and run around the house, I am his only friend.

[Guest guest]

/SherI had a right heart cath 7 months ago and it was not scary at all. They had a anesthesiologist on hand just is case even though all I had was the happy iv stuff (always makes me mad cuz sometimes I want to watch whats going on, I know Im weird) I had horrible bruising but only because the collagen plug didn't work on me and they had to put pressure on the artery the old fashion way! Laying on my back after wards for 6 hours was the worst. Take care an usually Bruce is right, the pressure is a lot lower than what the echo shows.Dyane Phoenix, ipf 02>> ... your last line really hit my heart, talking about how you and your son miss playing together. I also miss what I cannot do anymore with my great grandkids. They don't really understand. How old is he?> > I think I'm looking at a right heart cath. as well. I'll see the cardio-gal on Thursday and will know then.> I too get sick and tired of being sick and tired!> Love,> > > > > > > > MamaSher; 71, IPF 3-2006, OR.> Don't fret about tomorrow, God is already there!> hello friends> > > > Yesterday I had an appointment with a Pulmonary hypertension Specialist and his team in New Orleans, Doctor Bennet De Boisblanc. I got good news and bad news.> > The good news is that I may not have Pulmonary Hypertension, the team of doctors that evaluated me yesterday think that there is not enough evidence to confirm I have PH, they want to do a Right Heart Catheter, to find out if indeed I do have PH.> > In the EKG's it shows Right ventricular systolic pressure is at 35 mmHg, (this is the blood pressure going from my heart to my lungs). this pressure seems to be in the upper normal level. Considering that 27 mmHg is normal pressure and 41 mmHg is severe.> > The PH specialist told me that most of the times the EKG overestimates the pressure by 50%, the only way to know for sure which is the real pressure is by doing a Right Heart Cath.> > They told me is an outpatient procedure and I should not be afraid, ( I am scared already) The procedure takes about 30 minutes. I may have this done next Monday.> > Also good news is that they do have Lung Transplant services at Ochsner New Orleans, that means that in case I need a transplant I don't have to go all the way to Houston to have one. Still we want to keep that appointment with the transplant specialist in Houston, on Nov. 30th.> > The bad news is that they think that my shortness of breath is due to the increasing of honeycombing (fibrosis) in my lungs. this means that my scleroderma is progressing rapidly.> > yesterday was a really difficult day, my blood pressure was 99/55, very low, and they made me walk for 6 minutes to check my O2 levels, well it didn't drop too much, I was walking slowly on 4 liters, when I finished the test I was out of breath, had fast heart beating and pain from my knees down. Also my feet were freezing. While walking my heart rate went up to 101 and my oxygen went down to 95. I was so tired I could have gone to sleep right there.> > Hopefully the whole team of doctors will help me to get better. I am tired of been tired, I don't want to be sick anymore. I want to dance Salsa, Tropical, Rock but most of all I want to be the play mate my autistic son needs, he and I miss the days when we use to play and run around the house, I am his only friend.>