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