Tuesday, December 8, 2009

Week in Review

Hello and again thank you to you all. I cannot tell you what it means to know that I have support and prayers from so many loving friends.

On Monday, November 30th, I arrived at Reston for my appointment with Dr. Abdallah. I had already had 2 ‘near fainting’ episodes earlier in the day but had managed to stay conscious both times. I was very sick and very tired when we arrived. We waited for about an hour and then I was called back to do Orthostatic blood pressures. This is where my blood pressure is taken laying, sitting and standing. These reading are very important for Dysautonomia patients because depending on how the blood pressure and heart rate react with each change of position it can be a sign of underlying Dysautonomia problems that need to be addressed. When I stood, I was able to do so for a couple of minutes and that is all I remember. The next thing I know, I am on the floor with my head wedged between the wall and chair. I didn’t hurt myself too bad. Just a sore head and arm. The nurse didn’t finish the standing pressure readings and had me lay down. After a few minutes of resting, I was taken to another room, to have an echo-cardiogram done. (It is sort of like an ultra-sound of the heart.) This too, is done laying, sitting and standing. Now, when you have this done, you must completely disrobe from the waist up and put on a small, paper shirt that is unbuttoned in the front. I am used to be poked and prodded and after so many years of being sick, honestly my modesty has gone out the window. As the male technician was completing the scan, I had to stand. Basically, all I remember is him asking me to stand. The next thing I remember is this burly man holding me in his arms putting me on the exam table and that horrid paper gown is just not doing the job at this point! ha! He was so kind though, and immediately got my jacket and covered me. I was thinking, "Great, twice in one visit? What are they going to think?" There is still an honest fear that people-including my wonderful doctor-won’t believe me. It is a horrible feeling.
I was then taken to the exam room. My Mom comforted me and we both agreed that we hated that I had fainted at all but if I was going to faint -and twice at that- it was great that I did it in the office so that Dr. Abdallah could see and hear about it firsthand. Last Monday was the first time that I have ever fainted in any doctor’s office.
Dr. Abdallah came in shortly and sat down. I am always a little "fuzzy" after fainting. I couldn’t answer his questions very well. But fortunately Mom could. He only spent about 2 minutes talking and then he looked and me and said, "This is out of control. Out of control. We are going to have to admit you for a few days." Oh, gosh, I lost it. I hadn’t planned on this at all! I just wanted to go home. After he left, Mom came over and reassured me that this was for the best. She reminded me of the last time that Dr. Abdallah admitted me to the hospital. That was several years ago and I literally came home a completely different person. He made me feel so much better. I was sad but my hopes were high. I had/have great confidence in Dr. Abdallah.
So, within about 30 minutes I was in my room at Reston Hospital. I was really happy because I was on the pediatric floor and the nurses are always so very nice on the floor. Reston’s staff is one of the greatest hospital staffs that I have ever encountered!
I was on IV Saline the entire week. Fluids help me tremendously. Many Dysautonomia patients receive fluids at home as part of their treatment plan but that is something that my doctors have never been comfortable with. (I wish they did!) Tuesday was a very long and very rough day. Dr. Abdallah didn’t allow me to take any medicines so that I could start with fresh meds on Wednesday. I was really sick and terribly uncomfortable. I was so happy when bedtime finally came around. I took some medicine to help me sleep and that was the first night that I got a full night’s rest in weeks! I woke up Wednesday feeling like a different person just because I got some decent sleep!
There were several things that Dr. Abdallah found in blood work.
1. My Vitamin D and Calcium were low.
2. My blood count was low. (Borderline Anemia.)
3. And the few blood cells that I did have were very poor quality. They were low on iron and oxygen. So that could explain why I wasn’t feeling well.
Dr. Abdallah began treating me with Procrit injections. You may recognize the name. Procrit is advertised as a medication for post-chemotherapy patients to raise their blood count and allow them to have more energy. The Procrit works by stimulating the bone marrow’s production of red blood cells.
I was on Procrit once before in the Summer of 2001. It didn’t go so well, then. But, things have changed since that time and I am willing to give this a try again. I know what side effects to look for this go-around. I will be giving myself a shot 3 times a week. So, we will see.
Right before we left for Virginia, I wore a heart monitor for 24 hours. I fainted 3 times while I was wearing it. Again, we all hated that I fainted but glad that it could be caught on the monitor. Dr. Abdallah was honest when he explained that he couldn’t tell us what happened during that 24 hour period and he doesn’t know why I am fainting so much because my blood pressure are not dropping significantly.
By the end of week, my Mom and I both knew that I would not be coming home feeling a lot better. As much as I hate to say that, it is the reality. We both cried and tired to encourage one another. We knew it was true when I got in the car on the way home and within 10  minutes, I was dizzy and sick to my stomach. We both started crying.
And then last night, I fainted. Yes, I fainted again. I am really in shock. I am not sad, yet. I know it will come. I know the disappoint will set in a few days. However, I do KNOW that I will feel better again! I ALWAYS do! I just have to wait!
I don’t want to sound like "Debbie Downer". On the contrary, God showed me unconditional love from the four corners of the Earth last week. I am so thankful for my family. They sacrifice so much for me. I can’t explain the miracle that exists in our family.
I do have prayer request. I feel that it will work out but it is still upsetting, nevertheless. The day before we left the hospital, a hospital representative came to my room and dropped a bombshell. Our insurance, denied coverage of my entire hospital visit. The state of health coverage is a huge debate in the US right now. I know everyone has their opinions. Right now, I just want the insurance to pay because it is the right and just thing to do. I honestly feel that God will take care of us, in this situation. Again, maybe I am just choosing not to think about it too much.
Thank you all for reading this post. It is entirely too long and I hope it made some sense! I have a few more things that I would like to share but I think I will save them for another day!
Merry Christmas everyone! and love.


Superdud said...

I am happy that you are home. I am praying things will be better down the road. Merry Christmas!

Miss Breezy said...

I'm glad you are finally home! How wonderful it must feel, even though you're doing poorly. :(

I wish I could send you a hug!

Emily Rose said...

Oh Heather! I'm so sorry about the insurance. We have fought them a lot lately with my grandparents. I'm sure it will work out somehow. Things usually do eventually. I'm sorry you are feeling bad. You have such an amazing attitude through this, you are an inspiration. I hope you get some rest and feel better soon. Maybe the new medication will work. At least you are at home now, that's the best place to be. <3

Kelly said...

Praying that the Procrit helps and that you get good news form insurance (I hate them!). <3

alli michelle said...

Heather, I hope & pray that everything will work out for you. Thinking about you this Christmas!

Yasmin said...

Heather, I wish I could do more than say that you are in my prayers. I weep with you in this trying time and I look forward to rejoicing with you when God comes through, as He always does. (Romans 8:28 / Romans 8:32)

kat said...

i am just catching up on your posts and came to this one. It was very moving and i think you were brave both in writing about it and coping with it.
Its something that you try not to dwell on isnt it. But still i just wanted you to know, i can appreciate what you are going through and understand.hugs

I pray you will have some rest from the severity of this soon
take care lovely, and hope you like your post at my blog
Kat xx
ps sent a longer reply to you on FB

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