PHighting for the H1N1 Influenza Vaccine...

Let me first start off by saying that I respect the decision of those who choose not to get the H1N1 Influenza Vaccine. I completely understand that it is scary taking something for the first time, where there could be irreversible side effects.

On that note, I am so sick of people complaining about how "dangerous" getting the vaccine is and how they are promoting that people should not take the vaccine. When people ask me if I got it, and I tell them yes, half the time I get a rationing on how bad it is. Don't criticize me for choosing to protect myself due to my situation. I could careless if you take it or not. I don't control your life and you don't control mine.

As a class 4 PHer, I felt that it was absolutely necessary to get the H1N1 Flu Vaccine to protect myself. When a PHer gets a cold, symptoms seem to be twice as bad as a "healthy" person, so it seems to me. And when a PHer gets the flu, watch out. And it always takes what seems forever to get rid of it. I have spoken to numerous PHers about the vaccine, as well as many medical doctors and PH specialists. All PH specialists that I have spoken to have requested that all their PH patients get the vaccine unless they were allergic to the vaccine. What amazes me is how many PHers have tried to get the shot and are unsuccessful in receiving one. We definitely qualify for the vaccine according to the Center of Disease Control (CDC). I was one of those people at first that was denied a vaccine at my primary physician's office (I could have received one at UCLA Medical from my PH specialist but I would have to wait another month). Dr. Saggar at UCLA encouraged me to fight and get the vaccine before seeing him in 3 weeks to get the vaccine at my PH checkup for the fear that I might get it between now and then. Here is my story:

I called my primary care physician's office last week to see if they had received their shipment of the H1N1 flu vaccine. They were originally supposed to receive it in October but didn't get it until November (like most places in Southern California). I asked the appointment receptionist lady if they received their shipment, she said yes. I told her that I would like to make an appointment with the nurse to get it. She asked for my name and date of birth and then tried telling me that I was not on her "priority list" created by all the physicians in the office of all their priority patients and she also said I couldn't get it anyways because I was not between the age of 2 and 24. Now she didn't just relay this info to me, she had to say it with the biggest attitude under the sun. And I could tell she new NOTHING about PH, so she had no right to deny me a vaccine.

So this, of course pissed me off.

I knew I should have been on the list, so I asked to be transferred to my doctor's nurse (my doctor doesn't work on Mondays or Tuesdays, and of course this was Monday and the vaccines were already flying). I left a voicemail with my doctor's nurse (the woman NEVER picks up the phone or calls you back). So I looked up the "rules" on the CDC website that shows who should get the vaccine. I was pretty sure that you could qualify if you had a chronic lung disease and PH would qualify me as a person that would need to get. Here is what I read:

Groups recommended to receive 2009 H1N1 vaccine first are:

• Pregnant women
• People who live with or care for infants younger than 6 months of age
• Health care and emergency medical personnel
• Anyone from 6 months through 24 years of age
• Anyone from 25 through 64 years of age with certain chronic medical conditions or a weakened immune system.

As more vaccine becomes available, these groups should also be vaccinated:

• Healthy 25 through 64 year olds
• Adults 65 years and older

The Federal government is providing this vaccine for receipt on a voluntary basis. However, state law or employers may require vaccination for certain persons.

So clearly I qualify under the "chronic medical conditions" requirement. So I called the half-wit at the front desk again and told her to hand me over to someone that would answer their damn phone in the office, so I got another nurse in the office. I explained my situation and having PH. She said she new what PH was and she agreed that I should be put on the high priority list. She then made me an appointment to get the vaccine that afternoon. Thank God someone was willing to listen to me for two seconds without an attitude.

Later that afternoon, I got my vaccine and decided to say hello to a friend that works in my doctor's office. I was telling her about how I was shocked that my doctor didn't put me on the priority list, nor did my case coordinator. She was shocked as well. So all of a sudden this nurse interrupts us in mid-conversation and says, "so you got your shot?". I recognized the voice, it was the lady who put my name on the list and made my appointment. I said thank you to her for helping me out but relayed how shocked I was about how STUPID the receptionist was to think that ONLY 2-24 year olds could get the vaccine. I told her that I tried explaining to the receptionist about the other conditions that qualify you for vaccine beyond being 2-24. So to cut a long story short, this lady went on to argue with me about how the medical group was really only allowed to give vaccines to 2-24 year olds and that she did it for me as a "favor".

A favor, what the heck? I have the right to get this vaccine!

So I showed her the piece of paper that the nurse just gave me about the vaccine where it lists all of those that can get the vaccine first. I told her I have a chronic disease and I qualify and it is not up to the medical group, a nurse or a receptionist to decide who doesn't qualify for the vaccine. She even went on to say that she didn't even get the vaccine and that there were to few vaccines available to give it to everyone. My point was not that everyone should get the vaccine, but those who qualify for the first round, like myself, should be able to get it if their are vaccines available and I am willing to get it. I just shook my head and told my friend I would be call my doctor and my case coordinator to tell them about the terrible treatment I got from her staff and the lack of H1N1 vaccine protocol education that they obviously have.

Listening to other PHer's H1N1 flu vaccine stories, I have learned that I am not alone. Many PHers that want the vaccine, are being denied the shot. Don't let them deny you. You qualify!! PHight for your vaccine PHers. If you want, go get it and don't take no for an answer.

As a follow up note: my doctor's nurse called me the next day and I relayed my experience with trying to get on the priority list. She was shocked that my doctor didn't have me on the list already. I told her that I was disappointed that my doctor didn't take the time to put me one the list. Let it be known, I will be expressing my disappointment with my doctor and case coordinator directly. These people are suppose to be looking out for me, what is going on?

If you would like a copy of the rules and guidelines of the H1N1 Influenza Vaccine please continue to the link below:

http://www.cdc.gov/vaccines/pubs/vis/downloads/vis-inact-h1n1.pdf

Today is the 2nd Annual PH Blogging Day!

Hi PHers and other fellow readers!

Today is the 2nd annual PH Blogging Day! I am exactly a month away from my diagnosis anniversary this year as well. It is amazing how fast 5 years passes by and I feel awesome! Of course, over those 5 years I have had my ups and downs. And boy, have I sure learned a lot about having PH over the years. Even though I can't possibly list all the things I have learn over the years in this one entry, here are some of the most predominant ones that I can remember:

Drum roll please....

1) Line infections from IV Remodulin are no fun and they almost guarantee you a week long vacation at any hospital of your choice. If you think you have a line infection, go to the doctor's right away. It won't go away on its own, and antibiotics are your friend, REALLY!

2) Do what your PH doctor says...within limits. I really love my doc, but sometimes I have to push the boundaries to show him that I can really do stuff he thinks I can't. Like surfing in the Caribbean with a PICC line, and snowboarding, and backpacking around Europe for 3 weeks...you know, stuff like that. Now he is more lenient and lets ME control my medications and how I want to be treated for my PH.

3) Only email your doctor when there is MAJOR issues. Don't email him/her all the time, because when you really need their attention, then they will respond. If you email them all the time, they will start ignoring your pestering, "junk-mail-ish" crap you send. When I send a SOS email, he knows I am really sick to be writing him and he usually calls or emails me back within an hour.

4) If you don't like your doctor, then switch. PH is rare, but not that rare. There is more than one PH doctor out there. You just need to find the right doctor for your lifestyle. I am 26, my doc is in his 30s. There is no major age gap, so I think he relates better to my lifestyle. :)

5) Not every PH med is right for everyone. I will admit it. I hate Revatio with a passion. Who loves waking up to a red tomato face, swollen sinuses, and headaches?? Not me! So I stopped taking it. It might increase my pressures a little bit more than if I were to take it, but my quality of life is soooo much better now. No stuffy nose (unless I really am sick) and a lot less flushing now (only the flushing from my Remodulin which many people think is a sunburn, even in the winter). I was also on Flolan. The symptoms were horrific for me, so after a week I was transitioned to Remodulin and there are a lot less symptoms. Woohoo!

6) We have a rare disease but there is so many of us PHers out there! We might be years apart in age or a totally different sex, but we still go through the same emotions, anger, etc. My PHriends are like second family to me!

7) Get active with PHA. The first few years I would read the website once in a blue moon and visit the message boards but now I am much more active in the PH community, especially with PHA. At first I didn't know what to think of PHA (I was only 21 years old and didn't know much about having serious medical conditions). But I have come to realize that PHA is here to help us through our PH journey. They are here to fight for us on Capital Hill, they're here to collect information and data to improve our lives, and most of all, they are here to encourage us to keep fighting when we all know that we could easily give up. Now, I am on a super long list of PH activity stuff (Young Adult Advisory Board, Generation Hope, South County PH Support Group, etc... the list could really go on forever), and it has made a HUGE difference in my life. I know more patients that ever, I have new friends (I like to call them PHamily though), and I am constantly up to date about new PH meds/treatments/stories, etc. Plus it just feels good to know, that in some small way, I am helping out all of us, someway or another.

8) Having PH is difficult, but it is just as hard on people around you. I can tell my parents have a hard time with me having PH. I can see it. They don't hide it very well. And sometimes I just have to remind them that I am not "normal" and not to set their expectations too high. But they do push me. Mom encouraged me to go to work full time, and not to give up and just stay home. I really do think that encouragement has what led to me being as active as I am (looking back...in the beginning, I thought she was forcing me but now I know the difference, it was tough love!).

9) People around you can tell when you don't feel well and don't try to fake it. I used to tell my mom that I felt fine, and she would start after me....nag, nag, nag...she can always tell when my dose needs to be increased, when I take my Lasix, when I have a line infection, and there is no way to hide it. Even when I lie and say I'm fine. Mom calls it "mother's intuition"....I think I just don't hide it well.

10) Become B.F.F. (best friends forever) with your case coordinator. I send that woman flowers, cookies, cupcakes, email updates, random phone calls, whatever I need to do to keep her on my good side. When I need an emergency PICC line change she is on it. When I need meds, she is on it. She pushes paper through faster than anyone else I have ever met in the medical field. She can get my referral approved within 10 minutes. I swear that woman has saved my life a million times. Make sure to make your case coordinator your BFF.

11) Learn your own PH tips and then share them (newbies need our help). Over 5 years I have learned a lot of tips. From nurses, to doctors, to my own findings. For example, I know I can't have Hickman Catheters. After 3 Hickman line Infections in my chest, I now know that isn't the answer for me. Now I know PICC lines are the way to go. I have NEVER had one line infection in a PICC, they are quick to replace (10 min in outpatient), no surgery is needed, and with a PICC and IV Remodulin you can disconnect and go swimming. It's not for everyone, put I like them, and they work for me. I now know when I have a site infection and when I have a line infection. Yes they are 2 separate things (I didn't realize this before 3 years ago). Oh and never buy pants without a pocket. I gotta have somewhere to put that Chrono 5 pump. Oh and if you don't like your pump, ask your doc if you switch, you have options. :)

These are just a few things I can remember for now. If I can think of more I will scribble them down. And if someone asks a question, I will try to answer the question on here as well so everyone can see the answer (your name won't be mentioned of course). You can shoot me a private email if you want to keep it between us. I am down with that too!

Happy PH Blogging Day and Happy PH Awareness Month! Keep up the good work my little PHighters!

But You Don't Look Sick...

After being diagnosed and treated for Pulmonary Hypertension (PH) for over 5 years now, I feel great and I can finally say I feel the way I did before I starting having symptoms. To say that is a very large hurdle for me. I have been across the "Pain Chart" spectrum over the years (many days being towards the sad/angry face). Some of the pain has been caused by the PH and some caused by the side effects of the drugs that I take to treat my PH.

When I was first diagnosed, I thought I was just out of shape and gaining weight. I was tired 24/7 and all I wanted to do was sleep, sleep, sleep! I was out of breath all the time and eventually it was even difficult to walk more than 10 feet to answer the door, go to the restroom, or even crawl into bed.

Once diagnosed, I was put on Flolan, Revatio, Digoxin, and Lasix in the hospital. The Flolan during the first week was terrible. It felt like I was burning up inside, I was hot all the time, I was achy beyond belief and was so weak I couldn't walk anywhere. Thank God for Morphine. In week two of treatment, I was transitioned to Remodulin. My hot flashes seemed to die off and it seemed like there might be light at the end of the tunnel. I was now having side effects from the Remodulin, and they were unique on their own. I had a shooting pain in my jaw every time I took my first bite of eating something. I was up walking around but after awhile, my shins and feet would burn like crazy. I was red as a tomato from all of the flushing and I had constant diarrhea. I had a crazy headache from the Revatio that always lingered around. The Lasix was making my potassium low and I had zero energy. At this point, I was praying that this wouldn't be the way my life was going to be forever.

After I got stronger over the next few weeks, I went home but I still was having the same side effects as I was having above but was starting to gain some tolerance to them. I went home after 4 weeks of treatment at UCLA Medical Center in Los Angeles, California. After 2 weeks of resting at home and what I call getting my "bearings" back, I went to work and started my new full time job. The first weeks there were hard, but I needed the health insurance to cover all my new medications, surgeries, and treatments. I had flair ups of gout from the Lasix. I was bruised from all the blood tests and line placements. A lot of people asked if I should even be at work.

Five years later, I am still at the same company but instead of a sit down job as a customer service representative, I am in a highly active sales and market researcher position. I travel to numerous states a year, and I love going shopping on a weekly basis to look for new, hot, trendy products our company should research in. I pack product and attend trade shows multiple times a year and you can often find me running around the office trying to meet strict deadlines.

Nowadays, if I wear the right clothing, you can't see my PICC line that runs from my left arm to my pump in my left pocket. I still feel sluggish some days, and I still have every darn symptom that I had above. I still have a nice glow (which everyone tends to think I got sunburned, even in the dead of winter) and I still hate Lasix with a passion. I have learned to take it on the days that I don't have meetings, traveling, or shopping to do. The headaches and the flu like symptoms such as a stuffy nose, burning eyes, and post-nasal drip, all stopped once I stopped taking the Revatio. The shin pain, first-bite syndrome, and other Remodulin side effects come and go as they please (they often visit when I increase my dosage). I have tamed the side effects with the usage of Tramadol and Immodium AD. Overall, life seems good.

Now when people ask about my PICC, such as, "What is that for?", I explain that I have PH and I have it for my medications. Often people don't realize that it runs 24/7 until I explain how the drug works. I always tell them it is a lifestyle that I have just gotten used. Then they always say, "But you don't look sick, you look awesome, you just look normal". In someways that is a blessing and a curse. Sometimes people just don't understand that I am just too tired to do stuff. Sometimes people just don't understand that I don't feel well enough to even go to work in the morning. But I make it happen. I drag myself up, crawl my way into the office and make it happen. I think having my job and forcing myself to get up and go, having a commitment to meet and to be held accountable for something, has forced me to live a more "normal" life. It pushes me not to think about "why me?" but to think of ways of saving up my paycheck to go on my next excursion or even buying property. I don't just sit around and watch TV day after day. I work to earn my money, when I can easily go on disability. And I think this motivation to go to work, to be held accountable for something is what has actually made me healthier. I don't dwell on my illness but focus on other things that make me happy, like having a purpose in this world. I feel great and I believe I look physically better than I did 5 years ago. Even though I have PH, I believe all of my patience, reconditioning, and determination is what has gotten me to this point in my treatment and caused many to respond by saying, "But you don't look sick...".

November 1st, 2009: Day One of PH Awareness Month

Pulmonary Hypertension Awareness month has finally arrived!! In my adventures of spreading the word of Pulmonary Hypertension through Facebook, Twitter, Myspace, Blogger, etc. I have met numerous PHers, caretakers of PHers, friends of PHers, parents of PHers, brothers and sisters of PHers, grandchildren of PHers, and even just supporters of pulmonary hypertension awareness. I am up to over 900 PH PHriends on Facebook and it has been truly inspiring to hear other's journeys with PH and how they still persevere today no matter what step of the journey they are in; newly diagnosed, early treatment, stable, treatment decline, pre-transplant, post-transplant.

Over the past year, we as a PH community have lost some close PHriends who's battle with PH has surely ended too soon. But we must keep them in our PHighting spirit and hearts, during this year's awareness month, as well as all of the rest of the months in the year, while we wait patiently for a cure to this disease that has touched all of us, one way or another.

As a small part of my dedication to PH awareness this month, I will post articles, links, stories, and any other PH news in this blog as I come across it. I will also be writing about my journey with Pulmonary Hypertension and how I have come to this part of my diagnosis.

And on that note, I wish all my PHriends out there a healthy month of November and a successful PH awareness month. Keep blogging and spreading awareness about PH!