new POSSIBLE diagnoisis

By vrswesley Latest Reply 2014-04-09 23:33:59 -0500
Started 2014-04-04 05:42:07 -0500

They are sending me to another specialist. They thinki have a rare condition call pulmanary hypertention. serious stuff. All I know is its getting harder and harder to breath. Cant walk and talk and breath.

9 replies

vrswesley 2014-04-09 23:33:59 -0500 Report

update on my breathing…I unfortutnatly dont qualify (according to insurance-and they say they dont practice medicene) for 24/7 oxygen. my doc does think it would be helpful..he has me on K|LIMITED exhersion.. so my syptoms will not be as bad—i need more help so can go on my walks!. and feel ok.!..I wish the insur. people lived in my body! Im struggling. Dr didnt quit give me a diagnosis but he did explian to me with a pic of a heart, what he believes is going on. He called it Transient Heart Failure(not real dignosis, more a phrase he made up that explains whats going on). he also told me in not so many words that the Pulmonary Hypertension is a definate possibliity, again based on our discussion. (Blood is backing up into the heart),…And with this breathing problem Im having.. and what he told me today…I get why they think I have PH. He said you know you need the heart cath? I said yes. (that is how they diagnosis it) I do want to look up the medicaid omnibudsman see if theres any hope-probably isnt-to get oxygen…I also have more arthritis in more of my spine : ( had it in my lower spine, now I also have it in my upper spine.(he did an xray because of again the breathing.

vrswesley 2014-04-06 16:15:56 -0500 Report

well it looks like life expectancey is higher than I fisrt thought, although , honestly I dont know what it is..I do know Im getting worse..w/o treatment..its named Pulmonary hypertension ..PH for short.., right now Im just trying to get oxygen 24/7 til they can decide on a treatment.. it will kill me.. just maybe not as soon as I though.

Dr Gary
Dr GaryCA 2014-04-05 23:23:57 -0500 Report


Really sorry to hear this. It always hard to hear about a diagnosis, or a potential diagnosis. All that uncertainly.

Sounds like you are taking good care of yourself, including standing up for yourself. And getting educated.

I hope you will stay in touch with us. Keep us posted on how you're doing.


vrswesley 2014-04-04 17:25:21 -0500 Report

more info…well Im back he isnt ready to give me the dx yet, wants to do more tests first.. for blood clot first. so mon and tues lots of tests-taking spectran, dont need babysitters. not putting me out. ct scan and I believe echco. which I had a in dec and was fine, last time. which is why grimm think it the ph…this guy was mildly iritating but you would havre been proud of me! I stood up for myself! didnt let him get away with some crap.. I do think hes a good doc..just a few biases I need to break him of : ) Ill try to be patient and just stand up for myself ..not easy but today it was needed.

the dx thatr he is trying to avoidBut im betting is true…is the ph.. and

folks its fatal in 2-7? yrs. with treatment.. I think..Im not sure of that but…need to do more study..thats why hes looking other places first. but folks this guy tried to tell me my symptoms were all because of my weight!! BS! ythankyou! and
I told him so(more politly) because I know hes wrong!

vrswesley 2014-04-04 16:55:13 -0500 Report

well Im back he isnt ready to give me the dx yet, wants to do more tests first.. for blood clot first. the ph dx is a fatal woiuld take about 7 yrs..w/treatment..sorry about being so blunt…I just scared…why Im putting it this way.

GabbyPA 2014-04-04 13:06:03 -0500 Report

I am glad you are getting it looked at. Sorry that it's sounding so serious. Are there treatments for it?

vrswesley 2014-04-04 09:05:30 -0500 Report

Update : I am seeing the speaclist today! This afternoon! He happened to have an week he will be on vacation..I got lucky and prayed and spectran is taking me! the sheduler was very hassles-hes worked there along time. now maybedoc can set up some tests for next week even with him being gone.

Next Discussion: whey low experience »