Winter Time Preparedness

It's nearing the end of January, and boy has it been a brutal wintry season already! Blizzards, bitter cold, and something called a "polar vortex" entered into the vocabulary of over half the country in the last several weeks. Places that do not usually see very much in the way of chilling temperatures and feet of snow have been crying uncle!! People are already counting down the days until spring, but honestly, I would just love to see a day above 25 degrees!! I happen to live in an area notorious for dealing with the cold and snow, but that doesn't mean I ever get used to it! In my humble opinion, I would rather be in the middle of summer with hotter temperatures! But that is just me!!

So, how does one with PH deal with the winter weather? I posed this question a couple weeks ago to phriends, and I got some great responses! Since it's still pretty bad out there, and not letting up yet, here is a compilation of their suggestions!

~James: In cold weather, I stay in if I can. I read where I could experience pump problems in extreme cold temps, do not want to tempt fate. But if I have to go out, I run my 02 tubing under my clothes to keep it from freezing, and I bundle up in multiple layers. Also, have the heater in the van warming things up before I get in.

~Alex: For inclement weather, I always keep extra pairs of socks and gloves in my purse starting in October. Keep them in a ziplock so they don't get wet or dirty. Usually wear 2 or 3 pairs of gloves and socks due to Raynauds. Layer on tops and wear tights under pants or jeans. Always scarf up and wear a hat. But with Raynauds so bad, I tend to not go out when weather is bad.

~Rita: The cold here in Montreal has made it impossible for some of us PHers to go outside for more than a few minutes. When I absolutely have to go to an appointment, I wrap a scarf around my face and limit the amount of time (mere minutes) spent walking from public transport to the hospital door. Otherwise, I cab door to door.

~Cindy: I try to pick days to go out that will be the warmest of the week. Otherwise, I just wear coat, gloves, and hat.

~Jenn: I don't go out if I don't need to. If I do need to venture out, I dress as warm as effortlessly possible. Several years ago, I made the decision to stop caring about my appearance in the winter and just bundle the hell up. Leggings, warm pants, double socks, 3 shirts, bulky winter jacket, scarf, mitts, hat, huge winter boots. Even though it's hard to move wearing that many layers, I at least feel like I'm trying to keep warm. (When I see people wearing shoes in the winter I don't understand what they must be thinking - also t-shirts are incomprehensible to me during these months ((unless, of course, it is my first layering of shirt)). lol I do everything I can to try and stay warm. But mostly, I wait for spring.

~Stuart: Well I am probably not one to answer the winter question, but I always keep a blanket and some food in the car and make sure I have plenty of water at home.

~Stacey: I have Raynaud's too, and when I lived in the mountains, I made sure I had a warm hat and kept my core warm. Instead of wearing gloves, I wore special mittens that zipped open at the fingers with very thin gloves inside. Mittens tend to keep hands warmer than gloves. Neck warmer or scarf and ear warmer headband. Sunglasses to block wind. Ski type socks and waterproof boots with plent of good tread. Warmed up the car for several minutes prior to leaving the house and made sure I always had gas in the car. Always had a stash of air activated hand/foot warmers in extreme cases. Thin long underwear under all of my clothes (top and bottom). Hot drinks, salve for under my nose as I always got super dry, good lotion (Aquafor), chapstick, ice scraper with brush...I think that about does it!

~Erin: For winter which I always have, lol, I do soup for lunch regardless because it keeps me warm for the rest of the day and tea is my best friend besides my husband...I hope this helps.

~Bonnie: I get hubby to warm the car and always keep extra gloves in the car.

~Susan: On surviving the winter, here is what I do: 1. Wear Cuddleduds under my regular clothes; 2. wear mostly sweatsuits or warm sweaters; 3. use Hot Hands when needed; 4. use a space heater in my drafty house; 5. wear a coat that's certified for really cold weather; 6. cover my head when I go out.

~Neeta: Winter care: I am fortunate to have a wonderful husband who gives me door to door service. This comes in handy since my shortness of breath does not allow  me to wear heavy clothing to be comfortable and walk even a few feet! However, I will always cover my nostrils with a warm scarf so the air I breath is warm going into the lungs. MN (Minnesota) winters are very harsh. Even for 10' or less of walking to the door, I make sure gloves are on and a something covers my scalp. No long johns...or other heavy clothing in layers. Even my shoes are easy to take off - backless ones since bending to put them back on, is not a joke! I pray that my hubby outlives me so, selfishly, can be cared for him like a Princess!

I happen to follow many of the suggestions provided above in order to deal with the winter months! In the last couple weeks, I have only gone out twice, since the temperatures here have mostly been in the single digits with well negative degree windchills! When I do have to go out, and I'm by myself, I make sure my car is heated (thank you to the person who invented the car starter!!), and I wear layers. I makes sure I have my hat on, hood up over that, and scarf wrapped around my hood and my face. My gloves are on, and I'm ready to go! I also try to carry several days worth of my medications with me in case I get stuck somewhere. But mostly, I try to stay home where it's warm and if I really, really need something, I ask family and friends if they are able to get it for me.

And I also THINK SPRING!!!!

~Written by Colleen Schnell

Carson's Journey with PH+

    Carson Smith was diagnosed with Pulmonary Hypertension (PH) and Pulmonary Veno-Occlusive Disease (PVOD ) her freshman year of high school and has not let the disease slow her down. She is currently enrolled in a Masters of Public Health degree program.  Upon graduating this will be her second Master’s degree.

   

    Since we last heard from Carson in her “PHA Journey’s” article, she has faced a number of great achievements, difficulties, and eye-opening experiences, all allowing her to grow as an individual.

   

    In 2009, Carson graduated from Washington University with a degree in Anthropology. She worked for a year and used this time to adjust to her limits. During this time she was faced with the stress of having her files transferred from a children’s, to adult hospital, and meeting with new doctors who were not aware of her medical history.  Being a natural born athlete however, physical activity helped her cope. Soon, Carson was alerted that she was no longer considered sick enough to remain on the lung transplant list. The news left her with bittersweet feelings. While there was a breath of relief to know she was healthy enough to be kept off of the list, it also left her with a lack of security. Carson had already experienced the process of being added to the transplant list. With this background she knew that if one day she did need a transplant, she would have to go through the strenuous process of getting back on the list, and waiting for a donor.

  

  In August of 2010, Carson enrolled in Morehead State University in Kentucky where she pursued a Master’s degree in Public Administration.  By December of 2010, she found herself being rushed to an emergency room and later airlifted to a hospital in St. Louis. Doctors had discovered an accumulation of fluid in Carson’s lungs, leaving her sedated for 6 days and in the hospital for a total of ten. Carson had always considered herself lucky because she did not experience a lot of the things other PH patients did. She was never reliant on oxygen, and was always able to take oral medication. Upon being discharged from the hospital, Carson realized once again that while she was not on oxygen, and was able to continue in certain physical activity, she still suffered from a severely dangerous disease. Even with this setback, she graduated in 2012 and enrolled in a Master’s in Public Health program in August of 2012.

   While faced with the complications of living with a chronic disease, Carson has sustained a positive attitude, and has learned to appreciate the little things in life. She has maintained an attitude of resilience, and believes it is a trait that all PH patients should adopt. She states “it is so much better to try and have to quit, than to not try at all. You have to continue to fight, and use your support network.” For doctors, Carson believes you should “allow patients to test things.”

Kullie's Journey with PH+ (as told by her daughter, Lakesha)

“Continue to fight and educate, get involved and make life comfortable.”

Kullie Sanders was diagnosed with Pulmonary Hypertension and Pulmonary Veno-Occlusive Disease (PVOD) in November of 2010. Her journey was one of determination and fight.

    In efforts to cure through surgery what doctors thought to be a pulmonary embolism, Kullie Sanders and her daughter, Lakesha Jones were flown out to California by the University of California Hospital and flight for life. After 10 minutes of surgery, the doctor approached Lakesha, explaining that her mother had something much more serious than a pulmonary embolism. Kullie was now diagnosed with PH and PVOD. The doctor went on to explain that he would be surprised if Kullie survived another month.

    In the months succeeding surgery, Kullie faced a number of challenges. Having been such an active individual who was so full of life, and often worked multiple jobs, it was difficult to adjust to becoming so short of breath so quickly. The disease had essentially stopped her life. Kullie was now on 22 liters of Oxygen and had trouble breathing after taking only two steps. She was now dependent on a wheelchair, and needed transportation to be mobile.

    Although Kullie was faced with these challenges, she did not give up her fight. She had a strong determination, so strong that her doctor stated “I have never seen a patient fight so hard.” With the progression of her disease, it was now an accomplishment to take four steps without becoming short of breath, or to be able to get dressed on her own. One of Kullie’s biggest accomplishments took place at Church one Mother’s Day morning. She stood out of her wheelchair for a prolonged period, singing and clapping her hands along to the music.

    Throughout her fight, Kullie found an extreme amount of strength and support from her family. Although she was facing a life threatening disease, her biggest concern was always her children, and six grandchildren. They kept her going and fighting, she always wanted to make sure that before anything, they were okay.

    On May 21st 2011 Kullie Sanders lost her fight with PH and PVOD. Through her battle, she continued to keep her faith in God, and determination to keep fighting. Her daughter, Lakesha shares, “The most frustrating part of this experience was to find out that there is a PVOD specialist right here in Colorado after being sent to California. Make sure you talk to doctors and find out information. I think we put a lot of trust into doctors, but we need to make sure doctors are giving us the best care. Continue to fight and educate, get involved, and make life comfortable.”

                                          

A New Year, A New Beginning...Or Is It?

Happy New Year! It's hard to believe that it's the year 2014 already. Where does the time go to anyway?? As I prepared to write this blog post, I asked some phriends (friends who have PH) out in Facebook-land if they had any New Year's resolutions, and if so, what were they. I was all ready to hear about healthy new goals, breaking bad habits and creating better new habits, and becoming a better human being. I was not expecting a mixed collection of responses. Some people had one or several resolutions, and others had none. Here are a few comments from several phriends on why they haven't made resolutions:

Alex - I don't make resolutions, never have. They just seem to put us on a fast track to failure.

Jenn - I do not make resolutions. If I want to do something, I don't need January 1st to kick me in the butt and make me do something. I've never understood the point of New Year's resolutions.

Stuart - No New Years resolutions because they are just things to fail at. Set goals instead. Realistic attainable goals.

I will admit it, I have not made resolutions in the last few years. I have found it very hard to keep myself focused on the things I want to start doing (or stop doing), and I end up failing and feeling badly about it. So I figure, why bother? The only thing I do try to do every day throughout the entire year is be a good person, be helpful to others, and to try to maintain my health in the best way I know how. I don't really rely on the beginning of a new year to become the person I'd like to be!

Now, not everyone feels that resolutions are pointless. I did have some phriends who shared their resolutions for the new year, and here they are below:

James - Stay out of the hospital, was in the hospital on average every 6 weeks last year and that is too many. Also going to get out and walk, when the temperature is 45 degrees or above, that's when I can tolerate the temps. 

Rita - I did make a New Year's resolution: to try to find some kind of low impact exercise I can manage.

Stacey - I wouldn't call it making a resolution, but I do goal setting and reflect if I am doing things that support those goals. I do this throughout the year, but at New Year's, it's my time to re-evaluate.

Erin - So I have made resolutions my whole life. I have decided to do my 5 miles every day. That is a leap for me, I hope I can do it.

Bonnie - I try to make resolutions, but always break them. This year I'm just going to make sure I try and eat healthy and am there for my family. I'm close to God but would like to understand the Bible better.

Tiffany - I make at least one resolution a year because I become better, feel a sense of accomplishment and am moving forward. 

Susan - I did not make any official New Year's resolutions this year. I am however going to try walking 7 miles a week. 

Neeta - I have always made resolutions, set goals and kept them. Over the year, I re-evaluate at any special occasion (like Indian religious new year in March-April at the onset of Spring, onset of another season, etc., or whenever I simply feel like it) and add or take away the resolutions. This year, I want to get rid of a few pounds since my nose bleeds are a bit better. So, I started pulmonary rehab again. My goal is to be able to exercise without any monitoring.

So, how do you feel about New Year's resolutions? Did you make any resolutions for yourself? Or do you feel they are a waste of time? No matter how you feel, I do hope that each and every one of you have a terrific 2014 full of happiness, good fortune, and an abundance of healthy days ahead!!

-Colleen Schnell

The Importance of Caregivers

November is an incredibly important month for pulmonary hypertension, since it is the month where so many in the PH community try to spread awareness everywhere possible! But November is also special to many people who have caregivers, because it is Caregiver Awareness Month as well! A caregiver is defined as a family member or paid helper who looks after the care of someone who is sick or disabled, whether that person be an adult, a child, or an elderly person. A caregiver provides emotional and physical support as much as possible, and their helpfulness, thoughtfulness, and caring can be a blessing to the person being cared for. The following comments are from PH patients after they were asked to share what their caregivers mean to them. It is quite obvious that most of the caregivers play a huge roll in providing comfort for the PHer!

Jen C: Great - we all love our caregivers that are blessed to have them ! My hubby Manny (cg) is my rock - always there in good and bad days when it seems like the rest of the world has walked out on me !

Tiffany G: My caregiver (my fiance Mike) loves and accepts me unconditionally. There is nothing that he would not do for me and the PH cause. He takes me to all of my appointments, helps me understand the Doctors, picks up my prescriptions and eats the diet that I choose to make us more healthy. He also holds me when I am sad, crying and frustrated.

Barbara H: My caregiver who is my husband has been with me ever step of the way during this illness, I am so grateful for his kind, loving care, he has done without to make sure I get my medications and whatever I may need to survive.

Kevin B: Joann, my caregiver does everything for me, days I cannot get off the couch she is their, every doctor's appointment she is their, times I am mad at the world she is their to show me the good in my , when I'm ready to give up she helps me carry on. With out Joann I would not have the strength or courage to make it day to day, with out Joann I could not make it through this terrible sickness.

I want to also mention my son Josh who time after time has helped me through troubled times like when I awoke from passing out to find him laying next to me caressing my arm telling me "it's OK dad your OK" or the numerous times he has helped me while I was having a seizure or the times he has explained what PAH is to a doctor and EMS people that were unaware with what it was. To the day to day chores he does because I cannot. Between he and my wife I would never make it without them. I also have to include you folks my PHfamily and friends because you ALL help me even when your not with me because your always in my thoughts!

Kit B: My caregiver/partner has really stepped up at home where I need it. He cooks more, goes shopping for groceries, and tries to help see that I'm able to eat nutritious food even if I'm unable to cook it! In addition to that, he provides emotional support that others cannot. He never questions my struggles -- he accepts them and we work together to try and fix what we can.

Angie E: My caregiver, my husband, has fought for me through thick and thin and has saved my life so many times when there were too many doctors on the case and he was my point person, not taking "no" for an answer. He is always there when I need him even when I scream and yell because I am so tired of trying to breathe! God Bless Our Caregivers!!

Sylvia T: My caregivers, my husband and son, are always there for me, pushing me when I am down...loving me when I am having a hard day...making me laugh. They cook and clean and pay the bills. I always feel the love!

Bonnie H: My hubby, Brian, is my best friend and caregiver. If I can't do something I want to do, he'll figure it out so I can participate and not get left behind. He designed a garden closer to the house so I can grow my tomatoes and beans something I really enjoy. But just being there to make me laugh helps more than anything. I am loved.

Ruby Nan M: Louis, my husband, does every thing I need and never complains! He does the shopping, he does the cooking, cleans the kitchen, does most of the laundry, mixes my veletri, changes my cassette every night, sorts my pills once a month, etc. And he NEVER complains. I am very blessed. He always tries to lighten my load. He's the love of my life and my best friend and he always brings humor into the situation.

James R: My caregiver is my best friend, through thick and thin, she is also my wife. She never complains, and for that reason sometimes I forget I can be a handful to take care of, She is always there, even when I don't need her to be, She is my one true love and has been for close to 24 years now. I cannot imagine doing things without her, much less her not being a part of my life.

Tara S: My Caregiver/Partner Michael has been a blessing in my life. He has taken over so much of the housework (with a little bit of complaining)  but I know how much he loves me. He has to help me shower. He has to help me change my medicine out every two days. He does it all without complaint. He carries the laundry out of the laundry room for me so that I can put it away if I am feeling up to it and if I am not when he gets home he will take care of it. There is nothing that he won't do for. We are waiting right now for the call for Transplant. It is very nerve wracking. He has switched shifts at work to be home with me at night in case we get the call. We have been together for 7 years. I hit the lottery when I found him.

Alice Marie J: My care giver is my husband Dean, he helps me physically, emotionally and spiritually, he is my best friend, when I finally drop of to sleep I wake listening to him reading the bible to me! He is truly truly truly a gift from the Lord!

Shannon W: My best friend Susan. She has been there from the min I found out and has been there physically,emotionally,and spiritually. She took time to learn about PAH and how to help. The are days she has to keep me on my toes cuz I feel so down.

Neeta P: He knows it when I am ill or well. He knows it when I am blue or pink. He will help when the time is right. That is just when I am in need. This one is for all our caregivers. We are so very blessed to have them in our life. He is the only one who understands what I am going through and does whatever is needed to keep me comfortable, feeling better. On my good days, he lets me do what I can, on my bad days, he does it all and more without a peep, always cheerful and smiling, counting his blessings that I am alive and giving him company. Yes! he too reminds me when I forget to take my meds in spite of the alarm. He is the one who carries all the grocery, whether I accompany him or not, he is the one who is my moral, emotional, physical and spiritual support reminding me at the appropriate moments to be positive, to be thankful and to be happy. Its not how many breaths we take but, how many moments of happiness we have together in life that matters! I thank god for my caregiver every day of my life, for this beautiful gift He bestowed on me as my husband!

Stacey G: My hubby is my true partner in life in all ways. He caregives by giving me emotional support through the many ups/downs of having 2 chronic illnesses. He steps in when I can't and takes care of things to make my life easier, tells me I am beautiful despite my oxygen tubing and a line coming out of my chest and never gives me any worry that he won't be here for me when I need him.

Barbara T: I literally would not be on this Earth had my husband & caregiver, Chuck, given up on me. He took me to 14 different doctors prior to a correct diagnosis.

Lorrie T: I could not live w/o my caregiver! Joy has stood by me all along this crazy ride since dx 2 years ago. When I can not take care of me, she always steps in and mixes my meds. She is the most understanding of what we as patients deal with on a daily basis. I love her so much, she can't be replaced!!!!!

Elaine W: My caregiver helps me out in all situations, no matter how big or how small. I couldn't do it without her, she is special and deserves an award!!

Rozanne C: My caregiver is my partner, the love of my life for over 30 years. He is there for me, supporting me through physical, as well as spiritual challenges. And, I love him more each day.

Jennifer S: My caregiver and loving husband is my rock and the best advocate and partner anyone could wish for. I have no idea how it would face all of life's hurdles without him.

Kim F: My caregiver is my husband and he has been my rock for the last 5 years. He gladly took over all the daily house chores that I can no longer do and he waits on me hand and foot. He also learned how to mix my drugs and does that more then I do. I don't know what I would do without him he has been my best friend for over 30 years but in the last 5 has shown what better or worse really means.

Improper Diagnosis: The Challenge of PVOD

Improper Diagnosis: The Challenge of PVOD

Pulmonary Veno-Occlusive Disease (PVOD) is a disease of pulmonary venules and small veins, characterized by fibrous thickening and abnormal intimal cellularity, leading to vascular obstruction and pulmonary hypertension (2013, Istanbul, Pulmonary Vascular Research Institute Workshops and Debates). It is an incredibly rare form of pulmonary hypertension. With doctors knowing so little about the disease, it is often improperly diagnosed, or completely undiagnosed. Patients and caregivers share their stories and reflect on their journey.

Mysterious Symptoms—

“I started being seen by numerous doctors who all had different diagnoses. I spent hours sitting through medical tests and waiting for results. I felt like a lab rat always being poked and prodded. My freshman year (of high-school) the doctors’ suspected severe asthma. Today, they, and I know they were mistaken. I actually have Pulmonary Veno-Occlusive Disease (PVOD.” –Carson; St. Louis, Missouri    

 “..At every move, I was still gasping for breath. In late August we all knew I had reached a plateau as far as getting better. I was terribly worried since I could not breathe if I did anything strenuous – just walking and talking were exhausting. Finally in November, after many medical tests, and visits to various specialists, a biopsy and heart catherization needed to be done. Armed with those results they sent me to Boston to see another specialist. By the end of November, we had a diagnosis – Pulmonary Hypertension Veno-Occlusive Disease.” –Marie; Maine

“In November of 2010, my mom and I were flown out by Flight for Life and the University of California hospital for surgery of what doctors thought to be a pulmonary embolism. After 10 minutes of surgery, the doctor said it was something more serious.” –Kullie (as told by daughter, Lakesha; Colorado)

“We had spent the last year of her life (2009-2010) trying to sort out why she did not feel well, why she was so thin, why she didn’t want to eat, and why she complained of not being able to get her breath. We watched her slow down physically, finding new hobbies like reading lots of books instead of riding her bike or playing soccer. She had many appointments with several doctors... wrongly she was given a clean bill of health.” –Aine (as told by family)

Challenges and frustrations…

“Adjusting from having my parents around to take care of me, to taking care of myself during my first year of college was difficult. I struggled to do things for myself, and realized that I needed to take better care of myself. I also struggle with knowing when to tell people of my disease, or who I should tell and who I should not.” –Carson

 “For years, life had been too busy – I had lived on a diet of promises to myself that my time to relax would come when I retired; so I was ready and eager to start my new life. Instead on May 2 I found myself in the hospital emergency room.” – Marie

 “We know now that had the doctors looked further into just that one symptom—shortness of breath with exertion—or had the cardiologist seen her for a follow up; or had they not ignored her low blood states; or had they not labeled her with anxiety; or had the pediatrician followed up where the specialist left off, they would have found pulmonary hypertension...a lung transplant could have saved her life had they not ignored her.” – Aine’s family

Coping…

“Being physically active helped me adjust with stress.” –Carson

“My mom turned to her family, specifically my brother and I; we were her pillars, her strength and support.” –Lakesha

Why do you believe it is important to keep looking for answers?

“I think we put a lot of trust into doctors, but we need to make sure doctors are giving us the best [care]. We need to press doctors to keep working and finding information. It was a nightmare to find out there was a PVOD specialist right here in Colorado after being flown out to California for treatment.” –Lakesha

 Advice for Others…  

“Always keep a positive attitude and appreciate the little things. Cherish being able to do things and be optimistic. Keep trying to do things, it is so much better to try and have to quit, than to not try at all. You have to have an attitude of resilience.” –Carson

“My attitude was good and maybe that’s what helped me cope. I discovered there was life after diagnosis. This acceptance does not mean I liked it, I can dislike something and still accept it.” –Marie