Monday, November 17, 2014

Raising Awareness By Walking With Straws

November is PH Awareness month! All around the country and the world, there have been events of all sorts to try to promote awareness of pulmonary hypertension, and to raise funds to go towards research and hopefully a cure one day. Here in Western NY, there was a first-ever fundraiser done by Emily, the daughter of a PH support group member that I run (his name is Scott), and the student athletic committee at the college she attends. It was a 6 minute walk marathon, which is just one of the many tests a PH patient usually does when seeing their PH specialist. It's a baseline test used to see how far a patient can walk in just 6 minutes. It can be done with or without oxygen, and a patient can stop if they need to during the walk, but the timer will still tick if they do.

The 6 minute walk marathon fundraiser required participants to use straws. Why straws? Well, trying to walk breathing only through a straw simulates exactly how a PH patient feels on a daily basis. The shortness of breath felt trying to breath through a straw while walking hopefully gives a person a sense of how a PH patient feels trying to get dressed, or walk up a flight of stairs, or down a short hallway. The walkers had a choice in straws: a short straw, a long one, or a skinny straw. Each had a different degree of difficulty, with the shortest straw being the easiest, and the skinny straw being the hardest.

All the participants registered to do the walk, totalling a little over 100 people. The huge majority of people were athletic students, including almost the entire baseball team! After a wonderful welcome and introduction as to the purpose of the PH walk, everyone went outside and began the marathon. The path of the 6 minute walk was around the student center, near the library, and back to the student center. There were PH facts along the entire path. There was a timer counting down the minutes, and paramedics on stand-by just in case breathing through a straw caused a medical issue for someone! Everyone did well, though, including myself and one other PH patient who had attended!

After the walk, everyone gathered for pizza and drinks, and a little more money was raised by selling tickets for several raffle and door prizes. Eventually I joined Emily on the stage, and thanked the crowd for coming and experiencing what it felt like to have PH, if only for a few minutes. The raffles were given away, and soon the crowd had thinned out. While the event was short and sweet, I hope that it served it's purpose, which was to raise awareness of this disease. I do know that at least the athletes at the school are aware of it now! Hopefully another walk in the future can be planned, and perhaps be a bit bigger and involve more of the community!

Side note: Emily and I, as well as a couple other athletes, were filmed for one of the local news stations a couple days before the walk. We each were asked questions about the walk, why we were doing it, etc. I did share some of what I go through living with PH. Three different segments were aired in the early morning hours the day before the fundraiser. I did learn the next day that a few people had written in about the segments, either concerned because they thought they might have PH, or they have had PH for a long time and didn't know there was a support group in the area. I have reached out to these people since, and I'm just glad that a brief amount of TV airtime at least helped a few people!! 

Saturday, November 8, 2014

PH Plus Awareness: Samantha-Anne's Story

This is a long post. If just one person reads this, though, and it helps them to not have to wait 3 years to be diagnosed with Pulmonary Hypertension, then it has been worth it.

The first time I heard about Pulmonary Hypertension was on August 18th during my first appointment with the pulmonologist. It was included in a list of other things I hadn't heard of that might be causing my illness (interstitial lung disease, cardiac asthma, sarcoidosis and PH; I had heard of pulmonary embolism because that is what killed my brother in 1990 at the age of 47.) I knew that all of these things were serious, so I starting learning about them. I'm not sure why it took so long for my doctor to send me to a "lung doctor" when my main complaint for the past 2 years had been shortness of breath (SOB), but I was glad to finally be there.

PH seemed to fit with what was going on with me. However, a lot of other diagnoses had fit before and I honestly didn't want to be disappointed yet again when the doctor told me that I didn't have x,y or z and that he didn't know why my life had changed so drastically since November of 2011. After doing pulmonary function tests, an exam and having me walk in the office while my oxygen saturation level was monitored, the doctor said I would need to have a CT scan to rule out blood clots in my lungs. That honestly was not scary to me because I've been checked for that so many times due to my family history. He said that if there were no blood clots, then I would have to have a right and left heart catheterization procedure to see if I had PH. I had a left heart cath a year ago so I wasn't nervous about that, and since I had no idea what PH was, I didn't worry about it either.

My pulmonary function tests the year before showed that I have a mild restrictive process in my lungs but no obstructive process, so no COPD (which my mom died of in 2000, so I was glad that was ruled out.) I do have mild Alpha-1 Antitrypsin Deficiency, which can affect the lungs, so I knew that lung problems could happen to me. The PFTs he did on 8/18 showed that my lungs were not moving the oxygen in the air I breathe back into my blood (that's poor diffusion capacity). Mine was about 1/3 of normal. An MRI had already shown that my pulmonary artery is slightly enlarged, so I knew that something was going on and all signs were pointing to PH.

Because I really push to get things scheduled quickly and stay on top of my care, I was able to get the CT scans scheduled for 8/21, just 3 days after seeing the pulmonologist. The CT scans showed some mild lung scarring that I already knew about and thankfully no blood clots.

During these weeks I was dealing with a lot of body wide pain (unrelated to the PH) and swelling in my feet, ankles and legs. They basically were just huge stumps, from my toes to my stomach, with no delineation between the three. They hurt and the stinging in my feet was unbearable at times. I was also having to keep an eye on my kidney status because I have Stage 3 Chronic Kidney Disease. Thankfully, there are 5 stages and my disease is mild.

Let me take a second here to talk about the word "mild". I hate that word now. Everything I had going on with me was "mild". Mild means that the doctors don't do much for you and they basically wait until it's not "mild" anymore before they get serious about talking to you or treating you. At least, that was my experience. So even though "mild" is good, it sucks. My cardiologist told me that my heart issues were "mild" and didn't need to be treated and that I should see if the pulmonologist could help me figure things out. That just didn't seem right to me. I started asking myself a lot of questions and realized that I had a lot of questions for the doctors. My life had changed drastically in the past 2 1/2 years and something was causing that. There is no way I could go from being able to hike 2-4 hours at 7000-8000 feet altitude to being SOB and having a racing heart just walking room to room in my house.

I started believing that PH was the illness that was causing my problems so I made an appointment with the PH Specialist in Denver. Neither my cardiologist nor my pulmonologist told me to do that. I did it because I was tired of not knowing why my life had been turned upside down and I wasn't going to wait on them to tell me what to do to get better (since they hadn't done that anyway.)
At the beginning of September, I went back and looked at the sleep study I had done the previous November. I knew I had sleep apnea and was supposed to wear a CPAP, but it made me feel claustrophobic and like I was suffocating so I didn't wear it. I was diagnosed with obstructive sleep apnea in 2006. I got my first CPAP that same year. I had never used my CPAP consistently in all that time. When asked by my doctors if I used it, I told them how it made me feel and that I was not using it very often. No one followed up, no one did any education, no one did any counseling and no one referred me to a sleep disorders specialist. When I looked at the November sleep study (that I had requested be done,) I noticed that my oxygen level was <90% for >99% of the night with and without the CPAP. That didn't seem right to me. I thought that oxygen levels were supposed to be above 90% all the time. The pulmonologist had mentioned getting me compliant with the CPAP so I thought I should look into that. I called the center where I had the study and no one, to this day, has ever called me back. I just kind of figured that it must not be that big of a deal if no one called me back. I was very wrong about that. 

One of the most fortunate things that happened to me was getting sick around September 7th. I ended up in urgent care for bronchitis and an upper respiratory infection. They gave me oxygen and a breathing treatment and sent me home with a ton of meds. I called the pulmonologists office to let them know about my sudden illness. I spoke with Linda, the doctor's nurse, for 41 minutes on the phone. She was the first person who seemed concerned about the results of the sleep study and that I was so sick for so long without a diagnosis. She asked me to come into the office that afternoon so she could see me. She did a very thorough exam and asked a lot of questions. I left the office that day with supplemental oxygen. I could tell right away that adequate oxygen intake is a good thing. It felt so good to breathe. She took copies of my sleep study and my other paperwork to discuss with the doctor before my appointment the following week. Linda really cared, and her taking the time to evaluate me has made all of the difference in the diagnosis of my illness. Just days later, I was set up with 24/7 oxygen at home, including using it with my CPAP at night so I could get adequate oxygenation. On 9/12, when I had my PFTs done again, my diffusion capacity was 2/3 of normal. That was an improvement. My lung function wasn't as good, but I had bronchitis and the URI so that kind of made sense.

So, at 54 years of age, I was on supplemental oxygen 24/7 and taking diuretics to reduce the fluid overload in my body (hypervolemia). I was feeling older than I am. 

On 9/18, one month after first hearing about PH, I was in the cath lab getting my pulmonary artery pressure looked at. The cardiologist told me that I had PH (the pressure in my pulmonary artery was higher than it should be), that my body was overloaded with fluid and that I probably have hypoventilation syndrome (I breathe too shallow) due to being overweight. It was a bit overwhelming. The pulmonologist confirmed the diagnosis on 10/6. The PH Specialist confirmed the diagnosis on 10/7. They both told me that I needed to treat my sleep apnea, continue using oxygen 24/7 indefinitely, lose a significant amount of weight, consider moving to a lower altitude (I live at 6,700 feet) and definitely not travel to higher altitudes and keep my sodium intake to <2000mg/day and my fluid intake to <1.5L/day to combat the fluid overload. That was VERY overwhelming.

Thankfully, I was seeing a counselor to help me deal with being chronically ill even before I got the diagnosis of PH. She has been wonderful and extremely helpful. I also was dealing with the possibility of having lymphedema (causing the swelling in my legs) and had to work through the process of getting that diagnosis ruled out. I had to have a nuclear scan done where they inject the radioactive dye between your toes! Thankfully, it sounds a lot worse than it is. No lymphedema, so that's one less thing to worry about.

I have had a lot of questions for all of my doctors since being diagnosed with PH. There are 5 different groups of PH. It looks like I am in groups 2 (PH due to heart issues) & 3 (PH due to lung issues, which are sleep apnea and hypoventilation syndrome). Group 1 is the only type of PH that has specific medications to treat it. It is also the most rare and dangerous type of PH. Every single patient's experience with PH is different than every other patient's experience with PH. There are similarities, but everyone has something unique to their illness. That makes it difficult to treat PH. In my case, since my PH is due to underlying conditions, those underlying conditions have to be treated to make the PH get better. I have to treat my sleep apnea, my obesity, my fluid overload and my oxygenation issues. I'm hoping that if I treat those things, that the PH will get better and/or go away completely. I may have to deal with PH the rest of my life. To what degree, I don't know.

I have spent a lot of time on the phone with the PH Specialist's nurse. I wasn't supposed to see him again until April, but they want to follow up with me. So, I am going back up to Denver next week. The difficulty with having PH due to other illnesses is that no one is quite sure who is supposed to treat and follow up with the patient. It is a heart disease and it is a lung disease. It is complicated. Thankfully, the specialist is going to make sure that I get my questions answered and that I understand my PH as best as I can.

David and I are feeling overwhelmed right now. We are considering moving to a lower altitude if it would be the best thing to do. We still have so many questions. I am hoping that my appointment with the specialist next week sorts a lot of this out. I am looking at doing a Pulmonary Rehab Program 3x/week for 3 months to get me active again. I have basically been sedentary for the last 3 years. I'm hoping to get a portable oxygen concentrator (a machine that makes its own oxygen) so I don't have to bring oxygen cylinders with me everywhere and have to constantly be refilling them. I want to be mobile and get out again. I want to understand what my flavor of PH means to me. What can I do to feel better? What can I do, if anything, to halt/reverse/eliminate PH in my life?

I am going to see the ENT/Allergy doctor this afternoon to help with the constant nasal congestion I have. That keeps me from wanting to wear my CPAP mask at night. Wearing oxygen full time affects your nose and sinuses. What can I do to make sure I comply with wearing oxygen 24/7? I am going to see the sleep disorders specialist tomorrow. I know that being compliant with my CPAP, treating the sleep apnea and reducing the amount of time that my oxygen level is below 91% is crucial. I need to know if I do have the hypoventilation syndrome. I'm not sure if he would diagnose that or not but I'll ask him. And I definitely need to sleep better. Being rested is important, too.

I have a lot of huge lifestyle changes to make. I'm working on making those changes every day. I am looking at every option from surgical weight loss to moving from my beloved Colorado back to sea level (or as close as I can get). Being diagnosed with PH has changed my life. It has changed David's life, too. I am sad knowing that I cannot go back to Waldo Canyon to hike. My goal since I got sick 3 years ago was to get back to Waldo Canyon to hike again. It's at 7000 feet, though, so that is not an option right now. I can't go up to the summit of Pikes Peak, 14,114 feet, and get a "high altitude" donut (they just taste different up there!). Life is different now. I'm relieved to finally have a diagnosis so that I can move forward with my life, but it's slow going right now. I know that, quite honestly, one of my options is to do nothing and just get worse or at least, no better. I don't think I will do that, though. My pulmonary rehab program evaluation is next Thursday. I may be able to start the program on Friday, Monday at the latest. It will feel good to be active again.

The PHA website has been an invaluable resource since hearing about PH. Not only do they provide lots of information but they also provide a lot of support through online chats, telephone support groups, one on one email and telephone support and educational resources. I can't thank the people and other patients on the PHA website enough for being there for me and helping me to navigate through all this since being diagnosed with PH.

Thank you for reading this very lengthy post. I hope it helps you to understand the journey to a PH diagnosis and the affect it has had on my life. I hope it helps someone who needs to be diagnosed or has been recently diagnosed with PH. 

Written by Samantha-Anne Wagoner

Saturday, October 25, 2014

Making A Difference

Making A Difference Day is Saturday, October 25th. This nationwide day of community service began 20 years ago by USA Weekend Magazine, in collaboration with Points of Light. It is a day when just about anyone can go out and do something to help someone else! Clean up a park. Volunteer at a homeless shelter. Visit an elderly neighbor. So many options are out there to do something meaningful for another person. Of course, this is something that should be done daily, but at least there is one day people can share how they've helped a fellow human being.

When the the topic of making a difference was brought up for the PH Plus blog, I immediately thought of something entirely different that I could write about. I must start, however, with a very brief summary of my PH journey for those out there who do not know it. I was born with a congenital heart defect, and by the time it was discovered at 9 months old, I had already developed PAH. So this disease has been my entire life, 39 years of it so far! I was always short of breath growing up, had a blue tinge most of the time on my lips, fingers and toes, and napping was my middle name. At school I was not allowed to take gym or play sports, so when my classmates when to gym, I would help the 1st grade teacher. It was then that I figured out I wanted to become a teacher! Fast forward to years later when I received a Bachelors degree in Elementary Education. I eventually started teaching in a preschool classroom, which I totally loved! I thought I'd be doing it for a very long time....until those adorable little kids started giving me way too many of their germs. By my third year, and my third major respiratory illness, my primary doctor told me to quit teaching. It was a heartbreaking thing for her to do, and for me to hear, but I was 24 at the time and never thought of quitting a job. So, all of a sudden, I didn't have a purpose. At least, that is how I felt. What was I going to do now that my dream of teaching was pretty much down the tubes??

Enter a phone call from Accredo, one of the specialty pharmacies that supplies PAH medications and support to patients living with pulmonary hypertension. I wasn't really new with Accredo, having been on Tracleer for a couple years since seeing a PH specialist after quitting my job. But I was newly introduced to the idea of starting a support group in my area. It was really overwhelming to me, to be a leader of a group. And a bit terrifying, if I'm going to be honest! I was not a large crowd, people person. I had mostly been a shy person growing up, and even though I broke out of my shell a bit since leaving college, I still was really NOT fond of talking to a group of adults. Kids? Sure! Just not the grown ups!! I told the Accredo advocate that I would definitely have to really think about it. She said that was ok, and to let her know what I thought in a week or two.

I spent about a week talking to my family and friends about the possibility of leading a support group. I prayed about it a lot, wondering what I should do. I mostly was worried about being in front of people, but a part of me thought, come on, just try it. So after a week, I called the Accredo rep back and told her I'd like to try running a support group! It was then that she also got me in touch with the PH Association, and the plans were in the works to find a place to have the first meeting and ways to reach out to those in the area who might like to attend.

My first meeting was in October 2005. I had a small group of people attending, and I was beyond nervous! All I did, though, was introduce myself and share my PH journey. I asked others to share their stories as well, and before I knew it, the 2.5 hours were up! The first meeting was such a success, and everyone thanked me for gathering people together to discuss this illness.They were all in the same boat as me, and none of them knew there were others out there like them, too. I went home and cried a little from happiness, and knowing that I was able to help others!! And then I took a much needed nap!!

In the years since I began a PH support group, I have become more involved in the PH community online as well. I host 2 of the online chats a week, and I am a PH mentor. I also belong to many PH-related groups on Facebook. I try to help anyone who has been diagnosed, including the random calls I get once in awhile from someone who happened to find me online. I was so worried when I had to quit teaching that I would not have a purpose anymore, and yet, I do. I have found my purpose! My "classroom" was not as I imagined it would be, confined to a room with 4 walls. Instead, it's everywhere I can help someone, and educate about this disease!

I am making a difference. I am helping others diagnosed with PH in so many ways. I get thank yous every single time a meeting is over and people start going home. I have gotten emails from totally scared and newly diagnosed patients thanking me for taking the time to respond to their copious amount of questions. I think people who return to chat often means in some way, I've made a difference in their life by being so welcoming and trying to understand and listen to their concerns. In turn, being a support to people has also helped make a huge difference in my life. I don't feel so lost anymore, especially when I've helped a person find answers and I've possibly calmed their fears. I don't feel so alone.

In the spirit of Make a Difference Day, I share my story with many of my phriends who may have lost their purpose since their diagnosis. It is not impossible to find a new story, a new way to help others, even if they don't have PH. There are so many ways to make a difference in a person's life. It just takes a little time to figure out how.

Saturday, September 13, 2014

Positive Thinking Day!

September 13th is Positive Thinking Day, and this is a special day in my eyes. As a person living with two illnesses, positive thinking is my way of life. It's my lifestyle. I can remember it like it was yesterday, hearing life-changing news that could have broken me down, but all I could think about was keeping a positive mindset.  

Before my diagnosis, I had always been a fan of popular quotes. I liked to read through them, and they would make me happy. After I was diagnosed with Lupus, and then pulmonary hypertension, these quotes energized me. I felt a deeper spiritual connection with the words I was reading. I also felt like it was my new purpose in life to help all people live a positive life. 

At the time of my diagnosis, I also let go of all of the stress I was carrying with me. Until this point, I had no idea how much I let stress control my life. I didn't want any unnecessary stuff in my life. I felt like I already had so much to deal with, and why add on more. I always say that I wouldn't trade my diagnosis, it changed me, but in such an amazing way. It was like I could finally see the beauty in everything, and the wonderful in the small things.  

I started to have better relationships with my friends and my family. I started to experience life more. I mean, I wasn't scared of death anymore. I feel like I faced death when I was diagnosed. Although I never believed I had an expiration date, I thought that if I truly did, then I wanted to live my best life. Here I am two years later, and I can say that the past two years have been some of my favorite years. There has been so much change and growth, and I owe it all to positive thinking. 

When negative events happen, I think it is natural to react in any way that is right for the person experiencing them, but when these events come up, I like to be the healthy reminder that there is always a positive side. I am considered "Positive Polly" among my friends. I noticed that it is difficult to see through the negative, and I think everyone is entitled to be reminded that life has so many beautiful gifts that are hidden among the craziness of daily life.  

I am happy to be able to live a positive lifestyle. This has given me so many little gifts that I cherish everyday. I hope to be an inspiration to others, so they know that with a positive mindset, you can push through any hardship. Life is going to throw curve balls, but luckily we are strong, and we are able to create the happiness in our lives. My wish is that everyone can live the positive life that they choose.   

Happy Positive Thinking Day! 

Written by Elisa L. 

Friday, August 29, 2014

More Herbs, Less Salt Day

August 29th, 2014 is More Herbs, Less Salt Day. This is a day that encourages people to use more herbs, more home cooked meals, and less salt. In a world where less healthy meal options are so easy to come by, it is difficult for most to eat healthy and balanced meals. Adding more herbs is a simple solution to over salted options. Herbs will add to your dishes, and can be just as satisfying as salt.  

Living with an illness in which you are advised to eat a low-sodium diet can be difficult. One day you are able to eat what you want when you want, and the next day being put on a low-sodium diet can be hard to get used to, especially when most people use salt in many dishes. It was strange at first for me to eat low-sodium. I have always been a healthy eater, but low-sodium was an eye-opener. There were a lot of food items I had to cut out of my diet. After some time, eating low-sodium became natural. Now if I eat foods high in salt, I can taste it right away.  

I have been able to find many delicious recipes for healthy dishes on Pinterest. I simply searched "more herbs, less salt" and I was able to find so many great food recipes and options! Once I had to alter my diet to low-sodium I started to cook more for myself, and I realized I love cooking healthy food! It is nice to have control over what I am eating. I know that many people are very busy, and healthy eating can be a bit tedious, but in the end it is so beneficial. One of my favorite options to make is crockpot chicken. You can cook this so many different ways. I like to use homemade marinara sauce, spinach and chicken. I put it all in the crock pot and let it cook on low for several hours, and then I have delicious chicken that will last me a few days. 

Herbs are easy for me to come by, we always have them available in my house. You can get dried herb and spice racks almost anywhere, which are great for trying out new herbs. Another good way to get herbs is to have an herb garden. You don't need too much space; since herbs are pretty small you can grow a few in your house or backyard. I have seen retailers like Wal-Mart, Target, Home Depot, and Lowes selling little herbs and herb boxes. They are pretty inexpensive, and easy to grow. There are also ways of saving and freezing herbs. I have seen people freeze them in ice cube trays, this is great because they freeze in single servings. Again, you can find so many different ideas on Pinterest. You can check out my own personal more herbs, less salt Pinterest board for more ideas!

I think More Herbs, Less Salt Day is so important. I think too often we focus on faster rather than healthier. I hope that more people will start to incorporate more herbs and spices into their meals. Living with illnesses sometimes bring more awareness in all-around health, and our diets are so important. I will be honest, sometimes I wish I could eat the unhealthy fast food items, but once I do I feel bad and sick after. I feel better when I eat fresh foods, and less salt. I do like to go out for meals occasionally, but I am still cautious about what I order.

Eating healthy is extremely popular right now, which is great because there are so many resources out there for healthy eating tips and recipes. I hope you find some resources that will help you to incorporate a healthier diet.  Here are a few resources I have found helpful: 

Written by Elisa L.

Monday, August 18, 2014

Sister's Day

We recently celebrated Sister's Day on August 3, 2014. No matter how close you are with a sister, I think you will always have some special bond. I am nine years older than my sister and we have never been extremely close, but we do have a connection that I wouldn’t trade. We are so different, yet oddly the same. I have never talked to my sister about my lupus and PH, but sometimes my sister will come along to my doctor appointments. If anyone has seen me at my worst, it has definitely been my mom and sister. It is a part of my life that I let few people see.

With these illnesses, I have done my very best to maintain an extremely positive attitude. I want to be a role model to all who enter my life, but I especially want my sister to know that nothing can stop you. You can have the life that you choose, you can do anything. I asked my sister some questions about my lupus and PH, and how she feels about this whole situation. We have never had a conversation like this, so it was out of both our comfort zones.

My interview with my sister:

Do you worry about your risk for developing PH or lupus because I have them?

Having a sister with lupus and PH, I am concerned that I could potentially be at risk. From what I know both illnesses can be hereditary and I've never been checked for either one.

How has my illness impacted your life?

Your health issues do impact my life because I worry about you. I don't always know what is going on with you being sick, so it is hard when I see you some days and I can just tell from looking at you that you’re in pain. When I can hear you having a hard time breathing or coughing, it’s scary because I don't know what's causing you to have these problems. I personally don't know much about your illnesses or what you are going through, so I don't really know what I could potentially do to help when you’re having a bad day. It’s just hard when you know someone you love is sick, it’s just worse when you can see the effects the illnesses have on them.

 I can understand how any person who has a sick sibling could feel scared and at risk. Even though we have no family history of lupus or PH, it is still something that could show up. I think that family plays an important role in my health and my wellbeing, and it is good to know that I am supported, but I also want my family to know that even on a bad day I will always fully support them.

I also have a sister-in-law that I have become very close to over the past few years. She lives in North Carolina, and I try to visit her, my brother, and their three kids as much as possible. Jena, my sister-in-law, has lupus. She was diagnosed at a much younger age than I was – she was only 14, whereas I was 24 at diagnosis. In my opinion, her journey with lupus was much more difficult than mine. I can't imagine having to go through high school with the aches and pains and fatigue! I asked her a few questions about PH, too.

My interview with my sister-in-law:

5/1000 lupus patients may have PH. Had you heard of PH before you met me?

I didn't know about PH, and I also didn't know that 5 out of 1000 may have PH. Once I learned this info, I realized that I could be at risk for PH, too.

You have three sisters who don’t have lupus or any other chronic conditions. Does your lupus impact them?

I don’t think my lupus majorly impacts their lives. Our grandmother did die at the age of 28, and she had scleroderma, which is another disease that can be associated with PH.
I am so happy for Jena, she has been able to marry a great guy, my older brother. They have three incredible children, and they are such a joy to be around. She is also becoming a teacher, and has about a year left of school. It is so great to see how people in my life push through the pain, literally.

Sisters are so important to me. I learn so much from them, and I do count my friends as my sisters too. Not everyone will know the joy of fighting with their sister, and the craziness that is involved with having a sister; it’s an experience that is hard to describe. I am blessed to have a sister, a sister-in-law, and friends who are sisters. I try to celebrate these people every day in some little way.
Written by Elisa L.

Do you have a sister or other person in your life who helps support you? Be sure to share PHA's resources for caregivers with them! Learn more at

Tuesday, July 15, 2014

Summertime Survival!

Bright sunshine.

Hot days.

Warm nights.


Pool time, air conditioning!!

It's summertime around the United States, which means a whole other way of surviving everyday life due to the weather outside. Much like dealing with the winter weather, many PHers need to take precautions and make adjustments to make sure they can get through the summer months with no problems. Once again I have asked fellow phriends (friends with PH!) to provide some survival tips for the summer. Here are their ideas! Many thanks to everyone who participated in this blog post!!


*Kevin B: Well anything I could offer would be getting up early to get my yard work done or waiting until late evening in A/C and going from A/C to A/C lol although it's pretty nice down here in Terre Haute right now.

*Jen C: On the Texas Gulf Coast, I stay in the AC most of the summer, try to do errands early if I can, and take frequent AC breaks if I am out for any period of time! Cool pool helps me cool off when I can and drinking cold liquids! Also dress light lol

*Pat F: I want to continue walking as I did in pulm. rehab. I can do it on a treadmill...but I really like to walk for 30 minutes or so walking around Wegmans or Target. Both stores are clean, air conditioned..FLAT! I stop when I need to, pick up anything I need, or nothing at all. They both have clean restrooms. LOL (for those on diuretics) I can go to Kohls, but their carts are terrible, aisles are narrow...but it is clean and friendly.

*Anna A: Stay hydrated, I know we are limited on liquids, but we still have to make sure we don't pass out from the heat. We all keep our meds with us when we leave or we should and they should be kept in a cool spot, I like to have a mini ice chest in my car. Try to stay in shady areas, we can't be in the sun too long because of the type of medications we are on. If we are going for a walk, tell someone, just in case you don't make it back. Try not to talk and walk, we could lose our breath and pass out.

*Tiffany G: A/C and plenty of ice water.

*Guy M: Beer and some shade (I like how Guy thinks! lol)

*Alex F: Carry water with you wherever you go. Don't over exert in humidity, knocks me down for days! Go inside when too hot. Look at weather report. If it's bad for eldery or allergy sufferers, it's bad for us too.

*Vernon G: When it's too hot I stay in the AC.

*Patty F: South Jersey here...wear loose clothing and if you use liquid oxygen, take an extra tank to allow for evaporation in the humidity.

*Catalina L: I'm out and about a lot on buses and that means waiting at bus stops on HOT days. I take umbrella, frozen water bottle, the cooling rag that my PHriend Bonnie sent me, sunglasses. And in between I will go into cool A/C stores just to look around until I cool off. Then I come home and take everything off and relax in my own A/C cool home.

*Lisa T: As everyone else said, to keep hydrated. I know myself being on water pills I can get dehydrated easily. Also to keep cool. Not to eat anything heavy.

*Janet P: I love being outside...and I don't have anyone who needs me at home, nor much to do during the day other than housework. So I can be out in the heat and recover when my body gets too hot. I hydrate, use the AC when it gets way too hot or muggy.

*Cathy M: I use ac all the time because of the humidity. Being on the ocean we tend to have high humidity, as in 90%, most of the time.

*Jennifer K: Coming from Florida, summertime means bad storms in the afternoons and the potential for tornadoes and hurricanes. We, as PAH patients, should always be ready in case of emergency but when you add those pesky little natural disasters, we have to be even more diligent! Extra back-up supplies, generators in case you lose power, knowledge of where the closest "special needs" shelter is, phone lists including your Specialty pharmacy number, oxygen company number, etc...Extra cash! AND having a designated spot to meet at if you can't go home, and a previously planned place to stay in case your home is not livable...Anyone else from the coast want to add anything? Oh yeah, homeowners insurance!!

*Susan T: I hate air-conditioning because it freezes me, and I hate humid heat because it zaps me. It's not too bad at my house because I can keep the AC where it is comfortable for me. When I go to other places, though, I have to make sure I have a jacket or sweater for inside. Sometimes I still get too cold and have to go outside in the heat for awhile to get warm and then go back inside. I keep an afghan at my church because it is always too cold for me - summer and winter.

*Evelyn C: Go to the water, beach or pool with the highest sun block. Maintain in the water to refresh your body from the heat. Bring some cookies and cakes with lots of drinks of all kinds.

*Mary W: I get up early and do all my outside work early in the morning or late in the evening.

*Deborah W: Popsicles, ice cream, water (lots of water) and a/c. When it is too hot to go out during the day, I make it a point to sit on the patio in the evenings when it cools off some.

*Pat K: I use flexible ice packs. I take them with me in a small insulated nylon cooler with a bandana and apply to neck when I feel myself becoming overheated. Also in addition to sun block (apply often when you're outside), I take a large golf umbrella for daytime outdoor concerts, picnics, etc.

*Joellen B: Do your running around in the morning or evening to avoid the hottest part of the day. Also ask for help with some stuff that is too hard to do!!

*Regan S: I'm in the Mojave where it's regularly in the hundred and teens in the summer. I like to suck on ice cubes. Since I have to limit my water intake, sucking on ice makes my water allowance last longer! I take cool showers in the middle of the day. I exercise early, like 6am. I have a special car seat cover that holds ice packs to keep the car seat cool while I'm shopping. I carry a small misting bottle and tiny hand held fan in purse. I wear minimal clothing when it's hot and I'm at home. I just have to remember not to answer the door in my I keep a beach umbrella in my car, too.

*Pam M: Stay in the house during the hottest time of the day! A/C, fans, lots of H2O.

*Tammy D: Keep hydrated.

*Kathy B: Stay hydrated. Drink water and avoid caffeinated drinks as they dehydrate the body. Pace yourself in the heat. Don't try to do everything in one day, spread the chores/errands out through the week. Do a check on each other, we do that here anyway, but if you live by phamily, check up with each other. Help each other out. Be careful of aerosol bug spray. It messes up the lungs. Use lotions, no aerosols.

*Lynne C: I love Outshine Fruit Bars...25 calories and 0 sodium. Very refreshing.


If you have any summer survival tips of your own, please post in the comments below!