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