Losing Weight While Dealing With PH -Tami's Story

My name is Tami Arnold. I have pulmonary arterial hypertension, right side heart failure, a large painful arteriovenous malformation, and Cowden's Syndrome.  I had early stage breast cancer in 2002 and colon cancer in 2008. I like food, especially ketchup, tomato sauce and chocolate. Sunday evening was date night for me and my husband. That meant Chinese food. It got so bad the staff knew what we want before we told them. I never met an ice cream I didn't like. For a long time I ate way too much so...I gained weight.

I like working out. Exercise class was fun. Having thirty minutes on the treadmill listening to my music is great. The feeling I got completing a personal workout goal was great.  I grew up in an active family.  My dad was a distance runner. We were on the swim team in the summer. Swam during the day. Fall was swim team at the Y and gymnastics after swim practice. As an adult I did exercise classes, worked out and did spinning class with my husband. For along time I didn't see the connection between what you ate, exercise, and how much I weighted. Lots of things helped me put everything together. A big part was when I found out about my PAH and right side heart failure. Over the years my arteriovenous malformation  needed embolismed to help with the pain. In 2007 I had an emblozation. I left the hospital with an upset stomach, shortness of breathe and heart palpitations. Before the end of the week I was back in the hospital. After a two week hospital I had a PAH and right side heart failure diagnoses.

Two thing helped me realize I needed to do something about my weight.  I felt really bad. So bad that when anyone mentioned my weight I didn't care. While recovering I realized I didn't weigh that much when I was pregnant. Who ever thought my weight would be almost 200 pounds. Our health insurance was offering a rebate to anyone who joined Weight Watchers. You had to pay in full, were only allowed to miss three meeting and the insurance company got your results. The rebate made me want to give it a try. After talking to my husband he wanted to join to. That was great. We had support at home.

Because I was working we ended up going to different support meetings. My first  meeting was not bad. You stand in line and step on the scale for a total stranger. I am 5 ft 5. My starting weight was 189. I was upset with my self and grateful no one saw the scale. The lady who saw my starting weight was very encouraging. She told me I didn't have much to lose, then pointed to her before and after picture. The weeks I gained weight because of fluid retention she was understanding.  Every week I got in her line. My first meeting, I was the only newcomer. After telling the instructor about PAH, her first words were follow your doctors advice first. All she knows  is the program. I still follow her words today.

The first couple of weeks were frustrating. Along with counting points I had to look at sodium. Yes we got starter recipes.  We didn't have most of the ingredients in the kitchen. I never liked math let alone counting points and keeping track of what I ate. So I decided to try new things with an open mind. We bought bananas, carrots and any fruit in season on sale in the house to snack on. I tried lots of new things for dinner. Who knew chicken could taste so good. I marinade chicken in mustard and lemon juice. Before 2007 I didn't like any kind of mustard.  I made fish for dinner using just the microwave.  I can make  three kinds of chili, better than my mom. We still have steak. Now we have one steak and split it. Yes there are time I think I'm going to scream if I see another baked potato. But I make great baked steak fries. Fried rice takes time but I getting good at making it.  Because of right side heart failure I don't have much of an appetite, so I started eating only when I was hungry and stopped when I was full. That seemed to work for me. I did not count points.

Because of fluid retention my weight loss was up and down. That made losing weight  very hard and frustrating. My husband Dave lost weight every week. Doing it together helped. Dave learned to cook. If I found a recipe I liked, one of the first things I looked at was the  sodium contain. Who knew ketchup and spaghetti sauce have so much sodium. We now have a kitchen full of spices. It had been a long time since I used the crock pot. The last time I opened the canned soup, added water and put the meat in. Crock pot cooking has come a long way since them. Now a days you brown the meat, add fresh vegetables, spices. No more canned soup. That adds way to much salt. Last Thanksgiving we cooked a small turkey for two in the crock pot. It turned out great and we had leftovers for a couple of days.  Don't get me started on healthy microwave cooking and why I like fish.

I have to do whats best for me when it comes to exercise. Because of  PH, heart failure issues, and  I can not feel the bottoms of my feet an issue left from chemo. After breaking my foot I do things at my pace. The walks might be slower by I'm walking.   In Ohio there are lots of reasons its hard to exercise every day. As the days get shorter I'm only about to go with hubby and the dog on the afternoon walk. Snow and bad weather will make even that walk harder for me.  In bad weather I try to use my environment for more exercise.  If possible I make an extra lap around the store. 

My doctor keeps telling to to focus on what I can do not what I use to do and quit letting pride get in the way. That is really hard for me.  We went to an Indians baseball game this July. Our last row seats were hard for me. Baseball games mean LOTS of walking. The last two flight of steps were straight up. I had to stop twice. My brother saw that. 

I am learning my mom and dad had good ideas about food and exercise. My mom only bought one box of cookies every two weeks. We had one box of sugared cereal every two weeks. That's enjoying something you like while eating healthy. I still eat chocolate and ice cream. Just not every day and in smaller amounts. I like to cook again. Since 2007 I found out fast food isn't fast. What I can make is fast, tastes good and low in salt. I have given up the salt shaker. Found is better with less salt. Exercise is what you make of it. Start small and do something every day. My husband Dave and I have kept our weight off since 2008. Teamwork helps. He loves to cook. I get new food ideas from all kinds of places. On Twitter I found someone who's blog had the best ideas about easy,cheap, low salt homemade pizza. We had pizza for dinner last night. Reward your successes. I like the occasional peanut butter cup. Shopping for a smaller size never gets old. Yes I still look at my skinny reflection whenever I can and smile. My weight today is 153. Tonights dinner is opened back fried chicken made with corn flake crumbs with my baked steak fries and cole slaw.

Double Jeopardy -Rare disease x2

In 1973, at age sixteen, while living in Jamaica, WI, I noticed strange things happening to my body. My athletic, lithe self was slowly becoming tight, stiff and painful and I was tired all the time. This phenomenon could not be seen by anyone, but I definitely felt it. Over the next few months, my lack of speed was obvious in my track and field competitions and in my basketball practices. The pain and fatigue became overwhelming and as a result I had to drop out of high school my senior year.

A diagnosis of scleroderma (rare disease #1) was made about a year after my initial symptoms and the doctor told my parents I had two years to live. This time frame was kept secret from me for about 10 years. I spent 4 months in the hospital and my dramatic physical decline coupled with what I now realize was a deep depression kept me in a downward spiral to the point where I essentially became an invalid. During a period of about 8-10 years after my initial diagnosis, for no apparent reason, I began feeling better. The darkness cleared and I slowly began to regain my independence. With family support and by the grace of God, I was able to finish high school (at 26), get my driver’s license (a big deal at the time), graduate from college (at 34) get my master’s degree (at 35), travel extensively over Europe and the Caribbean, purchase my own house, mentor numerous children, and work in a career as an accountant for 25 years before being hit by PAH in 2009 (rare disease #2).

My house is right around the corner from the bus stop and one cool March day, as I left my home to run an errand, I heard the familiar diesel engine sound of a bus slowing down. So, like I had so easily done countless times before, I ran to catch the bus. But this time even though I caught the bus, I was completely and almost totally out of breath the point of near fainting. Luckily there were available seats on the bus. After a few minutes the palpitations slowed and I was able to relax. At my next doctor’s appointment I mentioned the incident to my rheumatologist who immediately knew that it could probably be pulmonary arterial hypertension (PAH) and referred me to a PH specialist.

Dr. Roxanna Sulica from Beth Israel Hospital in NYC did a right-heart catherization and determined that I indeed had PAH. Since then my life has taken a different turn. I retired a year after my diagnosis and, after repeated allergic reactions to Letairis and Tracleer, I am now stable on Adcirca, and I get tremendous benefit from pulmonary rehab, support groups and the educational conferences and forums.

To everyone with PAH and/or scleroderma, realize that there are going to be stages to your life and you will have to keep making adjustments to your “normal” every time you experience a setback or a disappointment. However, your life can still be rewarding and full even with 2 rare autoimmune diseases.

Somebody once said, “If you choose to sing, you will always find a song,” and I choose to sing.

MY BIO

I was born and raised in Jamaica, WI.  I moved to the United States in 1983.

I retired in 2010 at 55 years old from a 25-year public service career as an accountant with NYC government.

I now volunteer with an organization called New York Cares and support community service projects close to my heart, especially those that benefit the well-being of the disabled and other disadvantaged groups.

My PAH is secondary to scleroderma. I have experienced practically all the manifestations of both diseases. I do not travel out of the country as extensively as I used to, primarily because of the many adjustments needed for air travel with PAH. There are times I cannot get out of bed, but when I can I make sure I get out of the house. I am determined to keep a song in my heart because it makes me feel better and reinforces my usual positive, hopeful outlook on life.

I live in Brooklyn, New York and I have a host of family members and friends close by for support.

Josiah's Journey with PH+

by Jan Windz

When we met Josiah he was living in a group home for medically fragile children. At that time he was 4 years old, very tiny, non-verbal and had just started to walk. He was wholly g-tube fed and on oxygen 24/7. He would become cyanotic when you took off his oxygen to pull his shirt over his head. He was considered to be terminally ill and non-adoptable. His prognosis was that he would be dead within a year without a heart lung transplant. However, he was not considered a candidate for a transplant because he was in the foster care system. He carried diagnoses of primary pulmonary hypertension, complex congenital heart disease, severe infantile scoliosis, and Noonan's syndrome. He was also, at that time, thought to be autistic.

We had been approached about adopting Josiah because we already had some experience with transplantation. On August 31, 2001 I was blessed to be our adopted son, Felix's kidney donor!

As soon as we brought Josiah home I got him in to the pediatric cardiologist at UC Davis Medical Center in order to have them prepare the packet for transplant evaluation at Stanford. About a month after we sent the package to Stanford I received a call from Dr. Jeff Feinstein, at the Wall Center for PH, Lucille Packard Children's Hospital. He said "before we jump to transplant, why don't we actually try treating the PH!"

Since Josiah has begun being treated by Dr. Feinstein he has become a new child. He has now been on Tracleer (Bosentan) for almost three years. For us this has been an absolute miracle drug. He has never had any side effects. The child who became cyanotic in moments of being off of his oxygen now needs to be reminded to wear it. He can go outside without it and ride his bike for 30 minutes at a time! He still gets most of his nutrition from his g-tube feedings, but he is taking food orally as well. He hasn't stopped talking in the past two years (except when he is asleep)! He is learning, loves school and has only had one, very brief hospitalization since he has been with us. A year ago Sildenifil was added to his regimen. While the affect hasn't been as dramatic as with the Tracleer, it does seem to be helping as well. We are currently anticipating surgery in December for his scoliosis. Dr. Feinstein will work with the surgeon, also at Stanford, to be sure that Josiah will tolerate the surgery.

We don't know what the future will bring. Josiah still has severe pulmonary hypertension. However, he is currently doing incredibly well. And every day brings new advances in medicine.

We are truly blessed.