Finally some good news

[JBJBJB]

Yesterday I went to Chicago to visit a well known scleroderma doctor. He carefully examed me and told me my skin looked very normal and he wasn't convinced I have scleroderma. He also mentioned that I may have organ involvements but he wasn't sure if it was due to my chronicle bronchitis or fibrosis. He will have to discuss this with my new IU pulmonary specialist. (**** Please pray for me****)

This past Wednesday, I went to Indiana University to see a pulmonary hypertension specialist. He said by just looking at my first CT Scan, he would not conclude I have pulmonary fibrosis. He said he would like to run some “major tests” on me which means I will have some Pulmonary Function tests, walking tests, echocardiogram, and the last one I don't know if I spell this right, cardiac catheterization (CC) and some blood tests.

However, the Chicago doctor believes CC is very invasive and I should not do it unless I really have to. So I will need to discuss this with my IU pulmonary specialist.

It was such relief. I was so excited….. I left my purse in the doctor's office. After driving half way, about 2 hours, we stopped for dinner….. ONLY THEN I realized I did not take my purse. Good thing was the security people took my purse to the near by hospital which opens 24/7….. we had to drive back for another 2 hours one way to get my purse….. we got home midnight…

I want to share this with you who have been praying for me. I really appreciate your prayers.  JB

 

[Maz]

JB, this is such exciting news! Thank you for the update and so, soooo happy for you.  Does this mean you were misdignosed or do you think you just managed to get this under control nice and early with AP?

Candle is still burning in CT for you!!!!!!!!!!! 😀

Peace, Maz

[JBJBJB]

Maz,

I am really confident that AP will help me. I am not out of woods yet until the pulmonary doctor gives me some answers on those “fibrosis alike” CT Scan. I am hopeful.

If I indeed do not have scleroderma, I will do pulse dosage, which will give my liver and kidney a break.

So it's very exciting. Thank you for holding the candle for me and praying for me.

JB

[Kim]

Hey JB,

Great news, for sure.  I'm sure your head is still spinning. 

If it were me, I'd need a better reason before consenting to a cardiac cath.

Take care and keep us posted…..kim

[JBJBJB]

Kim,

I was really worried. I was told by three different doctors I had SD, including Dr. S in Iowa. To be told by this scleroderma expert that I may not have SD means a lot to me.

I totally agree with you about this cardiac catheterization. I am going to discuss this with the new pulmonary specialist. I really don't want to do it. I had it in 1992 in Houston. It was pretty painful, not fun at all, ended up I did not have any heart problem. It is also very dangerous. Some patients could die from this procedure. All they need to find out is if I have pulmonary hypertension which could be measured by repeated echocardiogram.  JB

 

 

 

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