Wednesday, July 8, 2015

Whew!  Been a long time since I have blogged.  But a friend suggested I do it, so here I am again.  Hopefully I will be more faithful to it than I have been.
Good news:  I AM STILL ALIVE!  And while that might sound a little dramatic, well that is who I am and how I feel.
Back when I first started blogging about having PH I wasn't sure at this time I would be alive. My breathing was horrendous, and I didn't have a good feeling about life in general.
Things have been up and down.
I went through pulmonary rehab right after my diagnosis.  I did very well and gained better breathing.  But insurance on this ran out and I stopped.  Plus I had started not doing well physically (it was winter) and I kind of gave up.
I slowly stopped the Weight Watchers and went back to old habits.  I stopped going to the YMCA to walk in the water because it became too difficult to walk to the pool, do the water stuff and walk back to the car.
Life just continued on.  My breathing got much worse.  Going from my car to the front door of my office building sometimes required 2 or 3 stops along the way.  And once I got in the building, I was so out of breath that I had to sit before continuing on to my office.
I wasn't sure which one was worse:  Winter or Summer.  Both were horrible on my breathing.
I was on FMLA and seemed like sometimes I was out more than I was in.  It was difficult to get ready in the mornings.  I would have to shower, rest, do my hair, rest, get dressed, rest.  You get the picture.  Sometimes I felt like I needed a nap after getting ready.
In November-December 2014 I started having severe chest pains.  It didn't matter if I was doing anything or not.  The doctor scheduled me in December for an echocardiogram and stress test.  We did these and really didn't find anything more than we knew already (that my pulmonary pressure was up).  They scheduled me for a heart cath on January 29th.
We started making plans for me to go out on disability soon.  My boss was retiring in March and since we had opened Carter BloodCare Central Texas together, it made sense to leave with him.
But God had different plans for me. 
On January 27th I was laid off.  Somehow I was prepared for it in some ways.  But it was still hard. 
I went on unemployment, not sure if I could work or not.  No jobs came my way, so we haven't had the chance to find out.
The biggest issue was that my health insurance ran out on the day of my departure.  I got picked up by my husband's insurance but not in time for the scheduled heart cath.  It took until February to get that going and the heart cath was scheduled in March.
Funny thing happened.  I went from being an employee at a blood bank to being a recipient of blood from a blood bank.  The first of March my breathing became extremely difficult and I had significant chest pain.  On a Sunday afternoon, an ambulance was called and I went to the hospital.
Come to find out I had an extremely low blood count that was causing the shortness of breath and chest pain.  My blood count was too low to have the heart cath scheduled the next week.  The decision was made to give me a pint of blood.  My blood count went up almost immediately.
So I was discharged from the hospital and the next week I had the cath.  Good news.  I had no blockages and other than what we expected with the higher pulmonary pressure, everything looked good.
They put me on a new medicine to help with the chest pains and almost immediately I had some relief from these.  My doctor put me on oxygen as needed.
While being unemployed I found I was bored easily.  Online shopping became both my friend and enemy.  I slept more than I wanted.  Cried off and on.  Depression would come and go.
In March we started planning a family vacation for June to San Antonio.  All of us, my sister and her family, my daughter and her family and my husband.  I thought about this vacation night and day.  We talked about it night and day.
During this time my blood pressure went up and up.  173/110 at the highest.  I had an appointment with my cardiologist June 15, but still...
The time for the vacation finally came and it was a great trip.  We all got along (pretty good with 10 people and a baby).  Besides it being hot and me having a few breathing issues due to the heat and humidity, I did pretty well. 
I went to the cardiologist the day after the vacation and my blood pressure was really up.  He increased two medications by double and told me he wanted to see me in 2 months.  If my blood pressure wasn't down by then he would add a FOURTH blood pressure medication.  He told me to continue to try to lose weight and to walk indoors as I could.
Cooking had become difficult for me.  Standing was excruciating.  Working in the kitchen was taxing.  So we had become reliant on fresh and frozen casseroles that I could stick in the oven or microwave and take out food.
About a week after the doctor's appointment a fire started under me.  I could not go on anymore blood pressure medications.  I read about sodium having an impact on bp (something no one had really ever talked to me about) and made the decision to cut my sodium.
We went to the grocery store and bought fresh foods, frozen veggies and fruits with no added sodium, and cut out take out food.  I found bringing a chair into my kitchen helped with food preparation.  We were eating delicious, healthy foods.  And fluid started coming off.  Boy did it come off.
About 4 days into the new healthy eating program I felt awful.  Tired and weak.  Took my blood pressure.  It was 80/63.  I had never had it that low.  I called the doctor's office and waited for them to call back.  My blood pressure stayed low, but a little better.
When the doctor called back we discussed my low blood pressure.  I told her about my new eating habits vs. my old eating habits. thoughts on sodium causing blood pressure issues was correct.  We had gone from taking in a TREMENDOUS amount of sodium from take out foods and frozen casseroles to very little sodium.  And with the loss of fluid I had been experiencing, my potassium was down.  That caused the low blood pressure.
I added some potassium and tried not to be too drastic with my low sodium diet.  My average bp is now 110/72 which is great.  And I have wrinkles on my feet where I have lost so much fluid I was hanging on to.  I feel better.  I haven't weighed yet, but I am sure I have lost some weight.
Now we are concentrating on portion control, lower fat, lower calories, and sodium.  I am finding new ways to cook that don't absolutely wear me out (no Julia Child).  My grill my husband got for me is getting used quite a bit.
I still don't know what is on the horizon for me.  I started the process of filing for disability, but it can be a long and difficult process.  We are cutting back on expenses until we know how that is going to go.  I am a little afraid of the financial future.
But as with everything, God will get us through it.  He always has and always will.  God is good.  ALL THE TIME!
Check back and see my progress.  I will probably start posting some of the simple recipes of the food I am making here.  Thank you for being my friends.  You have meant so much to me!

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