tag:blogger.com,1999:blog-6231807689994491595.post8495195831994673655..comments2023-10-20T10:24:21.847-04:00Comments on The PHight or Flight Project: How My Diagnosis is Hurting Me Anonymoushttp://www.blogger.com/profile/01807807585432203749noreply@blogger.comBlogger6125tag:blogger.com,1999:blog-6231807689994491595.post-25980046106273468012016-06-24T10:01:40.864-04:002016-06-24T10:01:40.864-04:00Hi Kathy,
It sounds like you are in good hands. I...Hi Kathy,<br /><br />It sounds like you are in good hands. I am glad to hear you have an array of specialists for your different medical needs. (PH isn't an always one size fits all box or diagnosis, and sometimes we need individual treatment and research.)<br /><br />Thank you for the kind words.<br /><br />all the best<br /><br />- sAnonymoushttps://www.blogger.com/profile/01807807585432203749noreply@blogger.comtag:blogger.com,1999:blog-6231807689994491595.post-65444022516829826852016-06-24T09:59:48.821-04:002016-06-24T09:59:48.821-04:00Hello,
I have not seen a geneticist.
Thank you ...Hello,<br /><br />I have not seen a geneticist. <br /><br />Thank you for sharing your story with me. It sounds like you have had quite the fight your whole life. I am sorry to hear about your frustrations trying to piece everything together. I understand how hard, and even how hopeless that can feel.<br /><br />Thank you for the kind words and encouragement. I hope you get the answers you need as well.<br /><br />all the best<br /><br />- s Anonymoushttps://www.blogger.com/profile/01807807585432203749noreply@blogger.comtag:blogger.com,1999:blog-6231807689994491595.post-30199663026216213372016-06-24T09:57:49.085-04:002016-06-24T09:57:49.085-04:00I live in Canada and things are a little different...I live in Canada and things are a little different here in terms of treatment and PH centres. (We have less access to PH medications here.)<br /><br />I am glad to hear that you have a multi blended team looking after you. I hope that you are in good hands :)<br /><br />Thank you for your kind words and encouragement.<br /><br />all the best<br /><br />SAnonymoushttps://www.blogger.com/profile/01807807585432203749noreply@blogger.comtag:blogger.com,1999:blog-6231807689994491595.post-72206302048370779502016-06-23T23:57:22.184-04:002016-06-23T23:57:22.184-04:00Hi Serena,
You sound a lot like me except they fo...Hi Serena,<br /><br />You sound a lot like me except they found my reason for my PH, lupus and a blood clotting disorder. I wish you could come to Chicago and see Dr. Roberto Machado and his team. He doesn't stop and will get every specialist involved that needs to be. When I am hospitalized I see him (pulmonary), the hemotologist, the rheumatologist, and the Med team. And internal radiology as needed along with anyone else he throws at me. <br /><br />I wish you nothing but the best in your search and hope you have your answers soon. Good luck and God speed. Anonymoushttps://www.blogger.com/profile/16796445990066181802noreply@blogger.comtag:blogger.com,1999:blog-6231807689994491595.post-82342953616362153932016-06-23T22:10:13.228-04:002016-06-23T22:10:13.228-04:00Hi Serena,
Have you seen a geneticist? I am cur...Hi Serena,<br /> Have you seen a geneticist? I am currently working with a geneticist to see if we can find a common link to my lengthy medical history - it could be another option if you haven't already seen one. I was born with a heart murmur, was diagnosed with cancer at 7 months old, was on chemo, was told I would only have 3 months to live, but ended up beating the odds and making it. I have had endocrin issues growing up, have had 3 open heart surgeries, and have recently been having lung issues (I am right on the line of my pressures being bad enough to have PH). It's been a frustrating past few years trying to figure everything out so I can totally relate to that feeling of hopelessness. I would really encourage you to not feel bad for "stepping on toes" because it's your body and you are allowed to fight for yourself. I'll be thinking of you and hoping that the next dr. appts get you in the door and get you the answers you need!!!Anonymoushttps://www.blogger.com/profile/06078038391800362442noreply@blogger.comtag:blogger.com,1999:blog-6231807689994491595.post-796155141196489762016-06-23T21:38:35.630-04:002016-06-23T21:38:35.630-04:00Serena, your story makes me sad beyond words. I do...Serena, your story makes me sad beyond words. I don't know where you live, but if you contact the local chapter of you Pulmonary Hypertension Association, they may be able to refer you to a specialist who will reconsider your situation. I understand the feeling of wasting precious time trying to get a proper diagnosis. It is desperate. You need someone who specializes in PH and autoimmune diseases. I have PH secondary to limited systemic scleroderma. My PCP wrote me off as idiopathic and never connected the dots to get the big picture of what my other symptoms were trying to tell him, even though a close relative worked as a nurse in his office and also had scleroderma. My team consists of a specialized cardiologist, a pulmonary specialist, a rheumatologist who is actively involved in research and treatment of patients with my disease combination, and an endocrinologist. I'm considering the addition of a metabolic specialist as well. <br />You are not crazy. You're a zebra. So am I. So are both of my daughters. Medical zebras. And the doctors waste your time because they are still expecting a horse, not a zebra. Don't lose hope. Keep your own records. And keep plugging away. You are your own best advocate. <br />I wish you peace, courage, strength, and a doctor who will listen to you. That word in your chart is just a word until proven otherwise. Anonymousnoreply@blogger.com