In May 1997, I had my first grand mal seizure. I was out with my friends and had a seizure in the parking garage. I had no idea what was wrong with me. I didn't even realize that I had a seizure. So I ignored the problem hoping it would go away. In September, I had my second seizure. I was rushed to the emergency room and had to go through tests. They had no idea what was wrong with me and referred me to a neurologist. He did an EEG and MRI and found nothing. I refused to go on medicines if they didn't find anything. I had my third seizure in October. So I made plans to go to a seizure hospital in November. A week before I was scheduled to go I had my fourth seizure and two days later my fifth. The seizure hospital in NYC admitted me right away. I spent seven days in that hospital with heart monitors on and EEG monitors on. They video taped me and tried to provoke seizures. By the end of the week I didn't have a seizure so they psychiatrist came to see me and told me that he could prescribe me some meds to help. He told me that I was making myself have seizures (YEAH RIGHT, who wants to pass out, shake, make noises, and loose control of their body functions). At this point I decided to check myself out of the hospital even though the doctors didn't approve. I wasn't about to take this for an answer. I had my sixth seizure in December. I was fighting daily with my insurance company to see other doctors. I kept getting told that it was all in my head and then handed prescriptions for anti depressants. I never took anything and kept fighting. In January I got diagnosed with hypothyroidism. I was hoping this was the answer to all my problems but I was wrong. In February I had my seventh seizure. I had my eighth seizure in March and my ninth in April, and finally someone decided to do something about it. I was put on seizure medication and decided to still see more doctors. This was all during my senior year of college. I had to drop out during my last sememster because I couldn't get out of bed without struggling to breath. They finally let me see a pulmonologist who did lots of tests but still couldn't tell me what was wrong. Then I finally got to see a cardiologist who did an echo and saw that the right side of my heart was very enlarged. He scheduled me for a TEE but it never got completed because I choked while they were doing the procedure and hit the doctor. They decided to do a cardiac catherization on May 1, 1998, and that's when they found out that I had pph. I was referred to the pph specialists in NYC (Dr. Barst and Dr. Horn). I saw Dr. Horn once but then she refused to see me again because my insurance company would not pay what she wanted. My insurance company gave me two choices either go to Dr. Gaine and Dr. Rubin in Maryland or go to California for treatment. (Dr. Rubin was still in Maryland when I first went). I decided to go to Maryland and spent two and a half weeks there in the hospital. They did a cath when I first got there and found my pressures to be 100. They also saw that I had about 20 pounds of water weight on me. They found that I was a responder to CCB'S and Flolan. So they wanted to try me on CCB'S but they were afraid my heart wasn't strong enough because it was pumping two liters instead of five. They put me on CCB'S under supervision and they worked. Before I left (two and a half weeks later) my pressures had gone down to the mid 60's. I have been on them ever since. Currently I take 31 pills a day.

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My pph specialists found out that the seizures were from PPH. Most people pass out from pph but I seem to be predisposed to seizures. I think I am the first person they saw like this. I finally got off the seizure meds and have been seizure free for two years in April, 2000.

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Today I went for an upper GI series since I am sick to my stomach everyday. I am also in lots of pain from my stomach to my chest. It was quite a bad experience. They made me put this powder in my mouth and chase it with water. Well I almost threw up. When the water hit the powder it started to bubble and fix. It was just awful. I told the technician that I couldn't swallow it and she said if you don't we have to start the test over. I was not about to try this again so I swallowed the stuff. Then after the test was over the doctor came in and did more testing. He asked me if I had a mental health problem like social anxiety. He was trying to say that I am making myself sick. So I turned around and said no I don't but I am taking 31 pills a day so that could be why my stomach is sick. That really shut him up. He didn't say anything else. I get the results tomorrow.

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I got the results back from the upper GI series. They told me that everything was normal but I am still sick to my stomach and in constant pain daily. I am talking to my pph specialist on Monday to see what he thinks.

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I went to see my pph specialist, Dr. Gaine, in Maryland on Tuesday. He did a catherization on Wednesday. He told me my pressures were 25, the high end of normal. Also at some points during the test it didn't show that I had pph. My heart is pumping 6.5 liters. He was very excited with my results as I am. My only complication was chest pain the following day which made me end up in the ER. They ran a few tests and said that everything was fine. I think it was just from the catherization.

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It's been awhile since the last entry and boy have things gotten crazy. About two months ago I started passing out after my afternoon meds. This would occur daily at work and I had no idea what was happening. I started hallucinating and having some major visual problems during this and called my pph specialist. He didn't believe that the Cardizem could cause this. So I went for a second opinion. I called Dr. Poon in NYC and asked to come in as a new patient he offered me July 22. Well things got worse and I started seeing colors and kept feeling faint. My blood pressure is usually measuring 80/40. So I called Dr. Poon yesterday and begged to come in as an emergency patient. They agreed that something was really wrong and that I had to be seen immediately. Dr. Poon and his pulmonologist (whose name escapes me at the moment) spent 2 1/2 hours taking my history, reviewing all previous records and listening to my symptoms. They both seemed very concerned and decided that a heart MRI and a cath were in order. I am scheduled for the heart MRI on July 24 and the cath July 25. So at this point we aren't really sure if the Cardizem has stopped working or if I am overdosing on it. They decided to slightly lower my dose from 840 mg to 720 mg until the cath is done. Today was my first day on a lower dose and I didn't pass out AT ALL!!! It's really amazing how much I can appreciate everyone else's normal(or should I say everyone without ph's normal). I am very excited to find out what is going on and I am feeling much better with less of a dose so I am hoping it's a possibility that I don't need that much Cardizem anymore. I am not sure what the next few weeks will bring but I am ready!! I can deal with whatever happens and I will keep updating this diary.

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Another quick note for today. I have sent my blood to Dr. Morse in NYC to be included in her study for the gene that causes ph. They think I may familial even though there is no one else in my family diagnosed.

And my side note is that I am going for my first tattoo tomorrow. I have decided not to let pph take over my life so I am going for it. After all I have always wanted one. I am getting an oriental symbol on the back of my neck that says HONOR, it somehow feels very fitting for me with the pph. I will let you know how it goes...after all how bad could it be. Think of all of the tests we have gone through already.

I am a bit nervous but I am ready. It's also to honor all of the ph people that are no longer with us. I think it's going to be pretty cool.

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So I got my tattoo...it didn't even really hurt. I just was so excited to be able to go out and get one. Almost made me feel like a real person. Yes, it's a pity party for me today!! I went to the Northern New Jersey support group meeting today and it was very nice. Everyone was extremely friendly. I just felt very alone because everyone had there support person there and I didn't. My family doesn't like to get too involved with pph. So I felt very much alone tonight. What can you do?

I started having those same symptoms again (passing out, hallucinating, etc.). So July 25th can't come soon enough. I just want to know what is going on and what we can do to fix it. I don't care what the solution is I am ready for it (mentally).

I also got a call from Dr. Morse to get blood from my sister, brother and mother. She also wants blood from my dad who hasn't talked to me in YEARS!! So I had to call his wife and ask if she could get him to participate in the study to help ph research. She promised me that she would get him to give blood and that he would call me. Well that was two days ago and he still hasn't called and believe me he isn't going to. It just amazes me that he could ignore his own daughter (much less a daughter with pph). Oh well let's see how things go.

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Okay so it's been awhile...I've been busy!!...I started Tracleer in October and it's been a big transition for me. It's made my headaches even worse plus in the beginning I was sick to my stomach daily. The stomach issues have gotten pretty much better but the headaches are really driving me CRAZY!! I am getting these headaches/migraines and it seems like they really can't do anything to help them!! I mean I am getting used to them and I always have some aspirin free excedrin with me so I am at the very least prepared.

In October they found some spots on my CT Scan in my lungs. They sent me for a second scan with contrast and my pph specialist is pretty sure it's nothing to worry about but I do have to go back in April for some special MRI. It's never really a dull moment, is it?

Now I have been sick since Christmas week. I am still coughing. So I am not sure if it's still from being sick or it's allergies or what. I think it's time to call the pph doctor. I really hate to call them because they NEVER call me back. It took me almost a week and a half to get my CT scan results. I had to call everyday to see what was going on because they kept giving me the run around about the doctor being on the other line and that he'd call me right back. I just can't believe that his office would do this to a patient. They did the same thing when I started the Tracleer. The nurse told me to call her the day after I started to talk about the side effects and that it was EXTREMELY IMPORTANT we talked that day and it took her three days to return my call. I mean come on now!! It's really crazy. Even the receptionist started to feel bad for me. I am not sure what I should do at this point. I ! am pretty much inclined to go to a different doctor. I just can't deal with not getting answers and being lied to. I think I will give them one more try when I call tomorrow about my cough. We'll see what happens.

As for personal life...I am going back to school part time at night for my second bachelor's degree in Accounting. I also work during the day full time. It's funny because I work for a company that administrates health benefits (an insurance company pretty much) and they are even giving me the run around. It seems to be my luck lately...lol. They told me in December that starting January our prescription coverage would stop once you hit $2000 a year. Well, that's about two weeks for me. Today is January 20th and I still can't get a straight answer on this or get this prescription coverage change in writing...lol. I am starting to think that they aren't doing it but that they said they were just to get me to leave since I cost them almost $50,000 a year just on drugs. It's okay because I do now have some secondary coverage that will pick up my prescriptions. I just can't believe that they could get away with this kind of s! tuff. It was also pretty funny that the other departments in the company didn't even get told about the prescription drug coverage being changed. Really makes you start to wonder.

I was supposed to go many months ago for my sleep study but I had issues with them too...lol. They couldn't call to get it precertified so I had to cancel. Anyway I have been putting it off. My great aunt who doesn't have pph just had a sleep study and she was diagnosed with sleep apnea. This plus the fact that I just can't get a decent night sleep lately are making me think it's time to go. Lately I have been waking up coughing. I am not sure if it's just this cough I have or if it's more. I am going to call my primary care doctor to see if they can send me for this test locally. I don't want to have to go back into NYC just to have this done. (I only live in NJ so I shouldn't complain but it's very hard to coordinate with work and school).

I am also starting to wonder if the Tracleer is helping anymore. I am having so much trouble breathing outside. It's not too bad inside though. I am hoping it's just because it's so cold here. I think today was 22 degrees. That seems to make me choke. Okay my ranting is over for today. Next time I will only come back with happy things...lol.
To end on a good note...I am getting ready for that second tattoo. I do have a preliminary sketch of it.

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Where do I begin?  My grandma was diagnosed with pulmonary hypertension in June 2003.  Her doctors thought it was secondary to the lymphoma.  She was also on dialysis.  It seemed really strange that two people in the same family could have it for different reasons.  We decided to contact Dr. Morse in NYC and see if she could do a gene study to see if it was familial.  My grandma's doctor's refused to treat the PH, they said it wasn't necessary.  In the beginning of December 2003, my grandma fell down the stairs and was rushed to the hospital.  At first we didn't think it was a big deal...until they had to put the breathing tube in.  They took it out, put it back in and took it out again.  At this point we got the response back from Dr. Morse stating the PH was not familial.  Good news for the family.  It was strange because it seemed like my family members were so afraid to get the test results because they didn't know what to do if they had the gene.  I am the kind of person that would want to know....you know, arm me with knowledge so I can fight the battle, but I guess not everyone is like that.  Shortly after Christmas, my grandma passed away. 

I'm not sure if anyone else can understand this but here goes...my mother recently decided to tell me her views on life, reincarnation, etc.  And her theory is that prior to being born you talk with your angel guides and decide what lessions your soul needs to learn.  She said people that are sick chose to be sick to learn from it.  I can't explain how that made me feel...aside from saying I am still upset over it.  It's not really the point that she thinks that...it's more the point that she said it to me.  I'd never wish anything on anyone but sometimes I'd like other people to live my life for just one day so that they understand it.  I mean how could she look at me and say I CHOSE THIS????  Wouldn't I have chosen a lesser disease or maybe one that had a cure????  I don't know but I really think that people should think and then speak.  You can't ever take back what you say.

So to update my last diary entry...I did get my second tattoo and my third.  Now I am planning the fourth.  I know alot of people on the list do not agree with it and I am not asking anyone to.  It's my choice...and it's something I've always wanted and I don't want PH to stop me.

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A New Challenge

Let's see I never know where to begin...so let me take it from the top.  I started taking new medication for my migraines around December 11th and started to have some side effects from the medication or so I thought.  I felt kinda seasick and had trouble balancing/walking.  I stopped taking the medication on December 18th and the feelings didn't get better they actually got worse.  I was stuttering and just about falling over and I could barely write.  By Wednesday, December 21st, I went to my neurologist and he said nothing was wrong and sent me home.  That night I went to the ER and had an MRI done and was released with inflammation in the brain.  I really didn't realize the implications and was almost going to go to work the next day.  However, I did stay home and went back to the neurologist and he sent me back to the ER for IV steriod treatment with a possible diagnosis of multiple sclerosis.  The next day I went back to the hospital (Dec 23rd) and was admitted for more IV steriods and released Dec 24th.  I had bloodwork to rule out a bunch of things and had some electrical testing...everything came back fine except the ANA bloodwork levels (which show lupus).  They don't feel that it is lupus and have now run more bloodwork to rule it out.  So that leaves me on oral steriods and trying to regain my speech/balance and ability to write.  I've been out of work since 12-22 and planning to return on 1-9. 
We still have no definitive diagnosis.  Both my neurologist and PCP feel that the MRI shows MS but neither can make a 100% diagnosis until the second episode.  So this leaves me looking for an MS specialist to at least get some more information to have some idea of what may be going on.

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Another cardiac cath.....

Well I just went to go see Dr. Lewis Rubin at the University of California, San Diego.  I flew in Wednesday February 8th.  On February 9th I had my appointment with him.  Now I used to see him 8 years ago when I was first diagnosed and he was in Maryland.  He was so nice, it was great to see him again.  They had me do a 6 minute walk test and I really thought I was going to do really good.  The tech explained that if my oxygen went to low that they would have to stop me until it went back up.  Anyway I started my walk and I was doing great.  AND THEN...I had to stop probably 3 times because my oxygen sats were about 80.  They almost immediately went up but right then I knew something was wrong.  I tried to ask the tech but she said she couldn't give me any answers...I would have to talk directly to Dr. Rubin. 

Well my catherization was the next day and I was nervous.  I don't know why but I was.  I've had like 5 caths so I shouldn't have been nervous.  Well the results weren't good.  My last cath was 3 years ago and my pressures were 33.  Now they are 58-60.  So we discussed treatment options like viagra, ventavis and a trial study.  The trial study would require me to go out to California in 6 weeks, 12 weeks, 3 months, 6 months, 9 months and a year. 

Well at this point I decided to try the ventavis...although I don't know much about it.

Then I had an overnight pulse ox study to see if my oxygen drops and it did drop to 80 because I woke up and saw it.  So I am waiting for the doctor to call with the results and what to do next.  They may prescribe oxygen at night or a sleep study.  I guess that may be why I keep getting migraines at night!!

So right now I am waiting for the ventavis and the pulse ox test results and what to do next.

But let me mention before I go that I did get another tattoo on the back of my neck under my symbol for honor.  I will try to post the picture.

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my lower back tattoo

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my ankle

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my neck tattoo before the dragon

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a new picture of me

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Some test results

Well I got the call from the nurse regarding my pulse ox sleep study and it came back normal.  I swear my sats went down to 80 because I woke up and saw it but they said nothing is wrong. 

I am still waiting to start the ventavis.  I hate dealing with insurance companies and I used to work for one!!  LOL.  It's just the entire precertification process that annoys me.  I want my new medication already so I can start feeling better!!  I know I have to learn patience.

As for the possible MS, I hated the first doctor and have made an appt for 3/29 to see a new doctor.

On a final note, my sister is pregnant with my nephew and due in 2 weeks.  The baby is almost 8 lbs already...LOL...he's my little whopper!!  It's my first time being an aunt and I am so excited!!  Don't worry I will post with a picture very soon!!

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Catching up.....

Okay so it's been awhile....

Let's start out with the positive.  I am officially an aunt.  My nephew David Joseph Jr. was born March 9.  He was almost 9lbs at birth.  Of course I am overjoyed to have a wonderful and adorable little nephew. 

I tried the Ventavis at the end of February and it only last one or two weeks.  It wasn't that I wasn't trying because I really was.  I just kept coughing and wheezing and oh yeah, I got some pain in my lungs.  Not to mention, it takes forever to set up, take the treatment and cleanup.  So I am off to the next treatment option right now.  I am going back to Dr. Rubin in California on Sunday to start in a clinical study of a new inhaled medication....more to follow!!

I did get a second opinion from the MS doctor and it is confirmed that I have MS.  The only treatment options are all injectible so I started the meds on Tuesday.  The first dose wasn't too bad however, I gave myself the second dose last night and got a headache, fever and chills for about 8 hours.  Now, I guess I shouldn't be surprised because flu like symptoms are a side effect.  I am just hoping it will get better.

Now, remember how I had that overnight pulse oximetry test?  Well I got a local pulmonologist at the request of my PCP and he did a sleep apnea test.  Guess what?  I have severe sleep apnea...so I am waiting to get seen at the sleep center so they can test me on the CPAP and then it takes about another week to actually get the machine.

Can I say I am very overwhelmed right now???? 

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