Welcome to our new diarist!

Welcome to the PHC Diaries, Edna Goodman!

Comments ()

Newbie to the diary forum

Greetings to all, let me start by saying that I am glad to be able to have an online diary about my personal experience with PH. I know that I will also learn a lot from the others diaries.

Let me start at the beginning, my lung doc did all sorts of test on me and finally ordered an eco. The results of the eco showed my pressures to be in the 50's. At that point he put me on Advair, Abuteral, O2 at night and upon exertion. This was on July 01 06. It was not till January that I had my RHC. The pressures showed to be at 60. Shortly after that he put me on cumadin.

I also have a heart doc and he was the one that did the cath. He says he does not understand why I am so SOB.

Well to make a long story short neither of these docs wanted to give me a referral to see Dr.Torres in Dallas. So I took matters into my own hands and went to my PCP, I told him my DX and asked if he would refer me. Without any further discussion he gave it to me.

I have my appt. with Dr. Torres on May 1st. I am very excited about it. They sent a request to my other 2 docs for all the info from my record about what they had done as far as PH testing on me. So I guess now they know I am going to a PH Specialist.

Well that is it in a nut shell till now, happy reading.

Comments ()

Good & Bad Day

I started out this morning feeling very tired and SOB, had a doc appt. at 9:15 with my heart doc. Found out I had gained weight from the steroids I am taking. He was glad when I told him I was going to see Dr. Torres. He gave me copies of my ecos and heart cath for the doc.

After that I went to a cookout where I volunteer for a hospice company. It is volunteer appreciation week. By then I was really tired. Went home to take what I thought would be a good nap. Once I laid down my chest started to feel tight. After a while I took my Sat's and they were in the 80's. It really concerned me because I was laying down. I called my lung doc and talked to his nurse, she told me to wear my O2 for 24 hours. I only use it when I am walking and at night.

The highlight of my day was when I went to the support group meeting in Ft. Worth tonight. I have many friends there with PH.  It was at the Garden Restaurant in the Botanical Gardens it was awesome. The topper was the guest speaker none other than Dr Torres. I got a chance to introduce myself to him and told him I would see him in 2 weeks.

Comments ()

It has been a while

I have not posted in a while, I had forgotten my password. So much has gone on since my last entry.

I finally had my appointment with my PH specialist. Dr.Torres in Dallas. It turns out I have left heart failure as well, so I was not out on any PH meds as of yet. I go back on the 12th hopefully they will tell me something about teatment.

Meanwhile I have developed tarsal tunnel on my left ankle. Very painful. go back to the doc today to see if I need surgery.

My little 11 year old nephew has moved in with us, it is very exciting for all. His mom was the same way always wanted to live with me so she totally understood when her son asked to live with me.

Well that is all I can think of for right now, I have to get ready for my appointment.

Comments ()

Pulmonary Venous Hypertention

Comments ()

Comments ()

My Heart Cath

This past Monday I went and had my 2nd RHC at the hospital. Dr.Chin whom is my PH Specialist performed it herself. It was not long after I got back to my room that she came in with the results. She said I have a stiff left heart and that is causing my PH. I them asked if my SOB can get better, to that she said no. Later that afternoon I called her office and left a message for her telling her that I had no energy at all and was wondering if I can take something. The next day I got a call from her nurse who told me that there was nothing for me to take.

I know that I am venting but I can't think of anywhere else to do it if isn't with my PHfamily. It is very frustrating just knowing that I can't get any treatment right now for my PVH.

At my last visit the doctor had told me to see about getting on Long Term Disability.  So today I went to pick up my belongings at work. It sure was nice to see my co-workers again. I even had lunch with my two best buds.

The best advise she gave me was to continue with weight watchers, watch my sodium, fluid and EXERSIZE. I plan to follow doctors orders for it can only do me good, wish me luck, thanks.

Comments ()

Doctor Visit

Well I had a doctors appt. on Tuesday. My son came in from Fl. to attend with me. So we get to the doctors office and to my surprize the nurse was the one who saw me.

It would of been ok except that she said totally opposite things then what the doctor had said in the past. One being that I would be able to go back to work, although that was flattering my doc had told me to look into long term disabilty. I have been off work since March and I do miss my coworkers of many years. But right now I can't imagine getting up at 5 am and working all day with no energy and no nap. Not too mention that I am always tired. I also asked her about my prognosis and she said 15 to 20 years. I have read on line that with my condition I would be around no longer than 5 years, She said that info was for PAH and that I have PVH. I assured her that what I had read was about my stiff heart and not the PH. Well nothing else was said about it but I guarantee you I still ask the doctor the same questions when I see her next time.

Thank you for letting me vent I appreciate you all very much.

Comments ()

Echo

Greetings, it has been a while since I have posted. I had an echo yesterday. Although I had echos before this was done at the hospital I go to see my PH specialist. I believe they knew what to look for and it was longer than usual, so I hope it was not too bad. One Tuesday I will have the results.

I am not on any PH meds due to left heart problems and that concerns me. I have no energy, which I had Revatio or something for energy, but my doc says I can not take any PH meds.

Well although short I just wanted to post a little something. Hopefully next time I will have good news.

Comments ()

Advanced Search

Home

About PHC

Contact Us

Site Map

Disclaimer

Volunteer

Donate to PHCentral

Register for WebBoard - Online Support for Patients and Caregivers

Already registered? Log in here

Need Webboard help? Frequently asked Questions

Contact the Webboard Moderators