As with most of the important areas in my life, both good and bad, I believe in getting as much information as possible about the subject. I have never been afraid of asking for help, both from friends and professionals. So it shouldn't be a surprise that when I was diagnosed with PH that I would look for help.
My first stop was the Pulmonary Hypertension Association (PHA). They sent me out a packet called an envelope of hope (remember, hope is my new word for the year). It was so helpful. The first words I read were "a diagnosis of PH is not a death sentence". They talked about the fact that there were many treatments that while they don't cure PH, they certainly work to extend your life.
I get a newsletter from PHA. I was interested in the following article: new PH drug
This drug is the first specifically made to treat Chronic Thromboembolic Pulmonary Hypertension (CTEPH) which is the kind of PH I have. A decision on this drug is expected in October. You can bet if it is approved I will be the first one at my doctor's office asking about it.
I was also interested in the fact that a representative from Texas in the Senate, Rep. Kevin Brady, sent a letter of support to Congress about a possible bill on PH. Bill in Congress So there is much to be excited about.
On the weight front, I lost 7 pounds in the past 10+ days since I started WW again. It felt good to see the numbers going down. My goal is a total of 15 pounds by Sept. 16 when I see my doctor again.
The meds continue to help me with my stamina (another key word in my vocabulary these days). I am feeling better than I have in some time. Thanks again for the continued words of support and prayers.
Each day I wash my face and put on some stuff called Hope in a Jar by philosophy. I am not sure it is doing any good, but I keep doing it.
When I put on my make up I pondered over the name. Hope in a Jar. Hope. What a powerful word!
Hope keeps us going each day. Hope that today will be better than yesterday. Hope that we will have lots of tomorrows. Hope in an everlasting life after this life.
This year, instead of resolutions, I chose a word for the year. My word was joy. Joy, joy, joy! Joy in my heart, joy in my soul.
Little did I know what this year would hold for me. I have had lots of joy and some sorrow also. But a new word has emerged.
Not in a jar, but in life! Hope that I have many years ahead of me. Hope that during those years I will be alive and living, not just alive. Hope that I can enjoy everything life has. Hope that my family and I can spend time together loving each other. Hope that God has some very special plans for me.
Hope and joy. Two powerful words. Combine them and all kinds of things can happen.
Here is to hoping you have some joy in your life today!
My new word for the year is Stamina. Since they told me my breathing won't get much better, I am working on my stamina. Trying to keep mobile without being dependant on oxygen.
I will say the new meds have definitely helped. They are getting fluid off my heart and my lungs. The B/P meds are lowering my extremely high blood pressure and helping also.
We have a plan of action to keep me going as long as we can. Exercise and a new diet plan. Get as much of this weight off as possible.
Today I joined the YMCA (thanks Mom for helping me with it!) and my sister joined also. She has been a great support and I really appreciate her. They have arthritis association approved water aerobics on Monday and Wednesday evenings that I will be participating in.
Getting to the pool proved to be quite a challenge. It is completely on the other side of the building from where you come in. There are not one, but two ramps you have to walk up to get to it. I will be using my walker to help me so I can sit and catch my breath if needed.
And I made a meal plan. I pretty much know the WW plan like the back of my hand so I am doing what worked in the past. This weekend I will be cooking and preparing meals to take with me to work next week. And as I prepare my meals during the week, I will be freezing the leftovers to use the next week.
Lots of fresh fruits and veggies. Buying fresh, not already prepared, meals is expensive. We spent over $500 for two weeks today (this includes the containers for the foods, new spices, bathroom/household stuff & a new individual blender to make smoothies in). Usually we spend around $150-$200 a week, so for two weeks with all the extras it was about $100 more.
I have had great support from all my family, esp. my husband James and from my work friends, not to mention all my FB and other friends. It really helps to know I have been and continue to be prayed for.
I know God has a plan for me. And I know He isn't going to let me go anywhere any time soon. This is just a left turn on my journey of life.
Wow! Cannot believe it has been 2 years since I last blogged. Boy has my life changed since then!
For one, I don't stitch anymore. It got to a point where I had no more wall space and no one to give my stitching to, except maybe the occasional wedding or baby gift. And I stopped enjoying it.
I got more into gardening, but since I don't have a large area to garden in I was doing my garden in pots. Not very successful, but still gave me the opportunity to play in dirt.
I still work for Carter BloodCare and am now the Admin Asst. to the executive director here. I am also in charge of scheduling our mobile staff. It is a wonderful job and I really enjoy it.
Facebook has been my link to "the rest of the world". And while that is fun, I really miss blogging.
So here I am.
Let me show you some updated photos. First is a picture of the family, minus my husband, last summer. It was a celebration of birthdays and a rare time we have everyone together, including mom.
The next one is from my birthday last year. Yes I still believe that birthdays are national holidays! I was a little "lit" in this picture. We had gone to lunch and I found a "punch" drink I really liked. Two of them and I had to have help getting out of the restaurant and then home for a little nap! LOL!
The final one is of my daughter and her family with James and I. We went to Grapevine Mills Mall for a little vacation. It was Jen's, Trent's and James' birthdays. While we were at the mall we visited Legoland and the aquarium. The night before we celebrated at a place called Magic Time Machine that has been around longer than I can remember. The waiters and waitresses dress up in costume and it is a fun place. We tried three times to get this picture right, but we just couldn't. Jen and I couldn't keep our eyes open during the flash. The drinks we are holding come out with smoke coming up (thanks to dry ice). The adult ones have a little something, something in them!
You can see my boys have really grown.
Ok, so why now am I starting to blog? Well, as with everything, it starts with a life changing event. I have found in the past that blogging helps me "sort out" things and communicate my feelings with everyone. While FB is great, not everyone wants to hear what is really going on with me. This gives my friends an opportunity that if they want to read more, they can simply click a link and come here.
Many of you know I have had a past history of blood clots in my lungs due to clotting disorder that I have. That has led to scar tissue in my lungs. The first one occurred 16 years ago.
Being severely overweight, I have always been somewhat short of breath. But it never really affected my life. I went where I wanted, did family vacations, worked, and generally enjoyed life. Occasionally if we were at a theme park or something like that I would use an electric cart. Mostly that was just a convenience to help me keep up with everyone and not "fall out" due to my fat body doing all the walking.
About two years ago, I noticed I was breathing a little heavier than usual, but figured I was just getting older.
I have always fought with my weight and have tried many times to lose weight. Sometimes I have had success, but in the end I have put the weight back on.
Last year, around this time, my family started a discussion about us going to New Orleans the last of November. There was a comic book convention my husband wanted to go to and it sounded like a fun time.
I knew the only way I could go would be to get to a point I could walk around without having to use a wheelchair. So I started a walking program. The first time I walked around the floor of my office, I almost had a heart attack. My breathing was horrible. I made it around once. And I sounded like I was dying.
But it didn't stop me. I had the support of many friends who would walk with me. I got to the point I could make 3 laps around the office without stopping, and a total of 10 laps. But I still never got to the point where my breathing was much better.
The doctor ordered a walker for me. While that helped with my knees and gave me something to lean on when I stopped, I still had trouble breathing.
After 4 months of continuing the walking plan, my breathing was still not much better.
We went to NOLA. And we had a great time. And I walked most of the time. But it was very hard. I had to stop a lot and catch my breath.
When we got back, I pretty much stopped the walking. It was just too hard.
About 3-4 months ago I noticed I couldn't walk hardly any distance at all without being very short of breath. Going from my car to the door of my office building, I had to stop before I got inside the building. From that door to the elevator, again I had to stop. From the elevator to my office door, I had to stop. You get the picture.
I decided I had to do something. So I went to my doctor to get permission to do water exercises. We talked about what was going on and he didn't feel it was a good idea for me to do the exercises. In fact, he said he thought my problem was pulmonary hypertension due to my past problem with blood clots and that he wanted to send me to a pulmonary specialist.
And so began my journey of fear. Pulmonary Hypertension. A death sentence. No cure, and your life is cut very short. At least this is what I found on the internet.
Tears, sharing this with my family and friends, more tears.
I had to wait a month before I could get in to see the pulmonary specialist. A month of pure agony.
Then I saw her. She said she didn't think it was PH, but rather my heart. But she wouldn't take PH off the table. She ordered a echo cardiogram.
When those test results came back she said there were issues with my heart. It was stiff and the blood wasn't pumping correctly. She sent me to a cardiologist and said he would do a heart cath. She said if it was my heart they could probably give me medications to help. I breathed a sigh of relief. But still she wouldn't say I definitely didn't have PH.
More waiting. A heart cath. I worried about the complications. I worried what they would find.
Well, yesterday I saw the cardiologist. He said he wasn't doing a heart cath. For now. He could see what was going on from the echo. My right side of my heart is pumping at 55% efficiency and my heart is not relaxing between beats. Mild heart failure.
And then those words I dreaded to hear. Pulmonary hypertension. Mild now. But still.
I asked him about my life expectancy. He said, yes, my life would be cut short. But he wouldn't give me a time span. He informed me it was up to God about that.
I left his office with a handful of new prescriptions to lower my blood pressure and help my heart. And he said that my breathing won't get much better and will get worse over time, I can still do pretty much what I want. Walk as long as it is comfortable. And I can do water aerobics. Just stay in the shallow end so if I get out of breath, I won't drown. LOL.
So what now? Well, today is my official "pity party" day. I am allowing myself today to take it all in. Take my new medications and see if I have any side effects.
Tomorrow, I pick my heavy breathing self back up and begin my life again. Enjoy every stinking moment of it, good or bad. Hug my mom. Kiss my husband. Laugh with my friends. Do mundane tasks. And never forget to tell each family member and every friend that I love them. EVERY DAY!
I am made out of the same stuff that keeps my mother going even though they didn't give her much hope 40 years ago. Tough stuff.
Hugs to all of you and check back here. This is where I will update my life's ups and downs.
I am 55 glorious years old and married to a wonderful man. I have one daughter who lives in Houston and 2 grandsons (ages 12 & 14).
I love traveling locally and chatting with friends.
I am retired and loving it!