Lab results/medical update for me

Lab results/medical update for me:

I have been debating since I found out this morning on how to post this, so I'm just gonna put it out there. PRAYERS ARE NEEDED.

My blood work is back and I have tested positive for Atypical HUS.

What is this, you ask? well, this is the best explanation I have.

http://ghr.nlm.nih.gov/c…/atypical-hemolytic-uremic-syndrome

There are a lot of big words in there and I understand if you have questions, PLEASE ASK ME. I will answer any and all questions that I am able to.

I had a medi port installed in my chest yesterday. This is to do blood draws from and get IV medications through it.

I am meeting with the hematologist on Monday to discuss the results, get my vaccines, and schedule the treatment.

There is only one drug for treatment for aHUS at this time. It is called Soliris and its done via IV infusion. From what I understand, I will get this once a week for 5 weeks and then every 2 weeks for possibly forever, depending on how I respond to it. It's a fairly new drug and the long term side effects aren't really known yet.

This disease is not common and I am the first diagnosis for my specialist. She had suspected this and took my case to a conference of doctor's to review before my appointment last week. (I do think its kind of neat that my case has been reviewed by multiple doctors at a conference lol). All of these specialists were in unanimous agreement that I have aHUS. After this, we did the blood work for genetic testing to confirm.

So, what do I need from you? I need prayers, and lots of them. Not just for myself but for my family as well. This isn't an easy pill to swallow. There is no cure and I do have all the symptoms/signs. Please add me and my family to your Church prayer lists. Please donate blood/plasma when you can. Please just pray.

discharge day - Going home!!!!

After a 3 day stay, I am being discharged from the hospital.

My kidney and liver levels have moved to the normal range. WOOOOOOOOOHOOOOOOOO! Praise the Lord!

As of right now, my hemoglobin and platelets are still low, but not critical low.

The discharge hospitalist just came in and told me that I am not to do anything that could cause potential bruising. (Guess I will buy a bubble to live in. lol.)

He did make sure to include that I am not to do any contact sports. Um, yeah, I can pretty much guarantee that will never happen. Only "contact" sports I have are when I accidentally run into a wall, which seems to happen way too often. LOL

So, I will be doing daily blood work to check the hemoglobin and platelet levels. Any drop and I am being admitted again.

Still can't go back to work yet. Hopefully I can soon though!

Happy Sunday! Praise the Lord for this day and what he is doing to improve my health!!!

Quick health update

Just going to do some bullet point updates on what's going on with my health right now.

• I'm back as inpatient at the hospital. 

• Been here since Friday afternoon. what day is it now? How do we lose so much track of time in the hospital?

• Hemoglobin and Platelets both dropped a bit over night. 

• Kidneys and Liver are at normal levels now. 

• Doctors appear to be observing me at this time and a little stumped.

• I got a "blood bank" bracelet this afternoon with my number that they use for transfussions. So I am assuming something is about to happen.

• Hematologist is re-visiting tomorrow to decide about central line placement and plasma exchange. 

• I will update as I know more.

• If you have any questions, please email me at asimm24@gmail.com

Thoughts for Thursday

http://eastcoastnat.blogspot.com/2014/10/thoughts-for-thursday-life-lately.html

I am linking up with East Coast Chic today for Thoughts on Thursday! This is my first time, so I hope I am doing it correctly.

My thoughts for today:

So irritated that my lab work came back badly, I can't go back to work, and there is a huge possibility that I may have to go back through installation of a central line and treatment again.
This picture is super blurry and poor quality. Sorry.

I have been cooking dinner a lot lately. I like it. Trying new recipes is fun!

I have made honey sesame chicken with rice/orzo and homemade baked sweet potato fries.

Also, Chicken with Goat Cheese Vinegarette with orzo and green beans

I am in love with my fall decorations in the house. I can't wait to make a fall wreath for the front door!

What are your Thursday Thoughts? Be sure that you link up with East Coast Chic!

http://eastcoastnat.blogspot.com/2014/10/thoughts-for-thursday-life-lately.html

Afraid

(photo above from Real Simple http://www.realsimple.com/ )

When you think about being afraid, it is feeling that you normally don't want to feel. I mean, who really wants to be scared or afraid? It's not a feel good type of feeling for us.

I am slowly learning that it is OK to be afraid. It means that I am feeling the complete emotions of a situation.

I thought this would be a good opportunity to talk about what I am afraid of and why. Would you care to do the same in the comments section?

Things I am afraid/scared of:

health. I am constantly living with the fear that my health is going to take a turn for the worse again (or still). This is something that could happen very easily and this is scary to me. I don't dream of being in the hospital for days, weeks on end. The thought of central lines, IVs, fluids, blood draws, transfusions...honestly scares me beyond belief.

being a wife. I am always afraid that I am not going to be the Godly, amazing wife that God meant for me to be. I want to be a wife that is ALWAYS there for my husband. One that prays with him. One that makes him laugh. One that makes him happy. One that fulfills all of his needs.

being a good employee. Do we always put our best foot forward at work? We all have good and bad days at work. I am afraid that the bad will sometimes over take the good. It is my job to make sure this doesn't happen. I think that I do a good job at this most days.

relationships with others. I am always afraid that I am that friend that I fear. The one that takes but doesn't give. I always do try to be available and give 100% in my relationship with others. But, let's be honest, this is hard. I am afraid of hurting someone unintentionally. This would honestly break my heart.

goals. I am afraid that I will not achieve the goals I have always wanted for my future. I am getting older and college seems so far out and an unrealistic dream. I am afraid that I will never work in the healthcare industry as I have always wanted to do, to help others.

future. I am afraid for what the future holds. Not just health wise, but with everything. The who, what, when, where of it all.

God. I am afraid that I am not living up to what I should be as a Godly woman. I want to find that Church to attend and a Church family to live life with.


I believe that it is OK to have fear, be afraid, be scared...as long as it is not overwhelming us. We cannot let these fears overwhelm us, or they win. We have to do what we need to do and fight for it.

So tell me, what are you afraid of?