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Posted by SusanT on 8/23/2006 4:58:16 PM (711 views) | | Modified by SusanT on 8/23/2006 5:11:28 PM | | You are not logged In [Login] [PH General Discussions] [PHA Message Boards] | | In reply to RE: Newly Diagnosed PH posted by Teresa on 8/23/2006 12:11:32 PM (644 views) |
Hi Teresa,
It's not your brain, lol.......there is nothing about me that is normal or uncomplicated. To answer your question, my Pulmonary Hypertension is secondary to my MCTD and Lupus. I was diagnosed with the MCTD about 10 years ago, give or take and it started with the talangiectasias on my face and hands. They are red broken capillaries under the skin that are flush with the skin and look horrid, but with everything that is going on now, 80 spots on the face is not to be worried about. It actually looks like a very bad rash or measles, nothing to touch, but only the skin. You can run your hand over my face and all you feel is skin. Alot of people think it is acne or such, but its not and too hard to explain, so to others, it is just a sun sensitivity. When my PCP saw this, he sent me to a rheumatologist and he did a huge workup of blood tests. The ANA came back positive, as did alot of other tests, which I can't remember. The next thing to appear was Raynauds. My fingers and toes turn the darkest shade of blue. Very painful and then, when they start to warm up, they get like a mottled red/blue. Then, the osteoarthritis came along with the positive rheumatoid factor. I was so tired all of the time and they have done many tests for sclerederma, but part come back as postitive and part come back as negative, so I guess the jury is out on the one. A couple years ago, the tests started coming back positive for Lupus. I had Discoid Lupus many years ago and then now Systemic.
I had not felt right since the beginning of the year and maybe even before that. But, around Easter, we went out to bring my grandaughter home (a 200 mile ride one way) and she stayed with us for 9 days. I could barely take care of her. I was in alot of joint pain. I was so tired that I couldn't function. I was incredibly short of breath and kept blaming it on my asthma. I was calling my PCP from the turnpike asking for an antibiotic because I was terrified of getting bronchitis again, as that shortness of breath combined with the unexplained that I already had, I felt would make it totally uneasy to breathe at all. We were getting ready to take my grandaughter back home and I was not able to help pack the car, the breathing was getting worse. I was coming down the outside stairs of my house and I was almost to the bottom and it felt as if someone had completely shut off all my oxygen and put a bag over my head. I had bluish tinted nailbeds and I kept ignoring it and thinking that it was spring and my asthma was being "really bad". We got Serenity back home and stayed over in a hotel and left first thing the next morning to go home. I felt a tad better in the morning, I was wheezing and using my nebulizer and still kept thinking it was my asthma. But, I kept putting it off until the beginning of May, when I went to my PCP. I had packed a suitcase before I left because by then I knew something was wrong and I knew I was bad enough to be hospitalized. He saw me and said that I had a horrible exacerbation of my asthma and had very little air moving in my lungs. So, into the hospital I went. They did a chest Xray which showed congestion in my bronchial tubes, and then I had a CAT scan of my lungs/heart/chest done that night too and that is when the clot showed up in my pulmonary artery. They figured that when we were taking my grandaughter back home, that is when I passed it. What they do not know is if it came from a leg.......they did bilateral venous and arterial doppler studies and everything was fine and no evidence at all that it had come from my legs. So, they still are stumped. This hospitalization was when I was diagnosed with the PH. They did an echo and it showed my pressures were extrememly high, and they didn't want to take those results, so the third day I was in the hospital, I had a RHC. It showed that my pressures are in the mid 80's, which is pretty bad. I am not sure what the pressure has to be to alert of HP. Does anyone know this? I was in the hospital for a week and got an appt. with my PH specialist within a week after disharge. I was very lucky. My PH doctor's partner thinks that the clot actually formed in the pulmonary artery and severe SOB I experienced coming down the stairs that day, was it moving just a very very tiny bit. I walked around with that thing in there for much too long and I would like to say something to all of you. If you ever experience any unexplained shortness of breath like that, out of the blue, and not like something you already had been feelng, call your doctor and go to the ER immediately. My PH doctor said that if that would have moved anymore, it could/would have been fatal. I did not use good judgement and I will never make that mistake again. I have learned so much since being diagnosed about my body, my breathing, my lab tests.....etc. And, everyday, I am reading more about PH and trying to understand more and more about everything associated to it. The endothelin, how the connective tissue can cause PH and affect it. I am like a new student in nursing school again. I was an RN years ago, back in the 70's and 80's. I had never heard of this before.
Well, I have to get off here and go finish packing. My PH doctor gave me permission to go visit my daughter and grandaughter. They just delivered my liquid O2 tank and concentrator for our trip tomorrow. My husband and I are going. I have a long list of instructions and the big one was no driving. I can't wait to see them, they are staying in a hotel with us. My daughter's stairs are too steep for me to climb. We are coming home on Monday, so I will talk to you then. If you have anymore questions, just ask and I will do the best to answer.
I, again want to thank you all from the bottom of my heart for being so kind and caring and informative. It's been a pleasure talking to so many of you.
Oh, I am so glad that I found the PHA site also.
Sue |
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SusanT's signature:
Sue:
DX: May 2006
Secondary to MCTD/CREST
O2 24/7
Tracleer
Plaquenil
July: Revatio
Nov: Bumex/Zaroxalyn
Ventavis 11/06-4/07
Cellcept
Aranesp Injections,
severe anemia
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