Tuesday, February 28, 2017

Hope - Rare Disease Day

This past weekend we went to San Antonio for The Atypical HUS Foundation conference. It's always such a good time. Seeing those that have become family. Seeing those that KNOW what we go through. Knowing that we are not alone.

Since we have been home, I have been thinking about where I was 2 years ago in this journey called Atypical HUS.

I thought I would share my thoughts and feelings for others. What better day to do this than on International Rare Disease Day?!

Two years ago, I was fairly new in my diagnosis of aHUS still. I was diagnosed Sept/Oct of 2014. That first year was HARD. There were a lot of changes. Life saving meds were administered. I was literally fighting for my life.

After learning what I could from the very limited information on this disease, I was overwhelmed and hopeless. I told those closest to me that I would not be alive in 5 years. Whether it be the disease taking me or me taking my own life after tiring from fighting the disease.

At that time, it was the truth in my mind. I had no hope.

In the late fall of 2015, Ben and I attended a luncheon put on by Alexion (the pharma company that makes my life-saving drug, Soliris). We heard a patient story, we learned a ton from the doctor that spoke, we met others that are in the same journey as us. WE FOUND OUR HOPE!

I knew at that time that with the support of those with this disease, the information that we could find by going to these conferences, the people we would meet...that I would survive this. I had found my hope.

Since that first luncheon we attended...I have been to and spoken at so many conferences. I have shared my story in hopes of helping others get through the rough patch and grieving stages of a rare disease diagnosis.

Without these conferences and people to share this journey with, I was honestly lost. I was staring a life threatening disease right in the face. It's a very scary journey to be on with rare disease.
There aren't many people who have the disease or understand what you are going through.

But the people at these conferences, these people get it! They are currently living it as well!

There is hope out there. There are researchers working to find treatments and cures for this awful disease. We are one of the few rare diseases that actually has a treatment. We have each other. I have made some incredible friends that are now family. I have hopefully helped others somehow along the way.

We met several people this past weekend that were very recently diagnosed with aHUS. You can always tell how overwhelmed people are with this disease. It's so much to take in.

To those new patients, and even the experienced patients, please don't give up.

Please reach out to those that you trust. Reach out to those that are experiencing it as well. Hang in there. We are a team, a family. A family...that will fight together and love you through each set back and step forward. We are here!


Thursday, February 2, 2017

spleen infarction

I wanted to post an update here as I have had a lot of people asking why I was having scans done earlier this week and for those in general who want an update on my recent health scare.

Please know that I don't post this type of updates for attention. It is strictly to help others that might have a similar situation, or to update those who want an update.

Also, having an ultra rare disease, it is helpful to see the issues that others have, to know you aren't alone, and to see what type of treatment others have been through.

I really do appreciate all of the thoughts and prayers. They really do mean more to me than I can tell you all.

With that said...my last week has been interesting, to say the least.

At the middle of last week, I started having pains on my left middle back and left side. I just assumed it was my Crohn's, because I have been having some minor issues with it. 

This past Monday night, the pains traveled to the abdomen area as well and became extreme. I was doubled over in pain. So, I called my GI's office first thing Tuesday morning, thinking that I may have a blockage or obstruction. My GI ordered an emergent CT scan for that day. I went, had the scan. Came home. Wednesday morning, I had an appt with my GI. 

The good news is, I didn't have an obstruction. As a matter of fact, my intestines look pretty good. There are some things we are keeping an eye on, but that is typical for Crohn's patients.

The bad news is, I have an infarction on my spleen. This means that a blood clot traveled to my spleen and cut off the blood/oxygen supply to part of my spleen. This portion is about the size of a walnut. Because it cut off the blood/oxygen supply...this part of my spleen is dying. 

This is something that can happen with aHUS (atypical Hemolytic Uremic Syndrome). It's not too common though. I am actually my hematologist's first patient to have this particular issue.

I have learned a lot about the spleen in the last few days. Your spleen filters the red blood cells, platelets, and helps your body fight infection. Because I am immuno-suppressed, I need this help! You can live without a spleen, but for someone with my conditions, it's not ideal.

So, the dying/dead part will remain, and the rest of the spleen will do it's normal job. 

The worse part about this is the pain. My hematologist told me that he cannot believe that I am able to work while having this pain. I just do what I need to do. 

On a normal person, they would recommend aspirin and/or blood thinners to prevent clots. Because of my GI issues, we are choosing not to go this route.

However, my treatment for aHUS should be preventing this. 

At the beginning of January, I was doing really well with my treatment and my blood levels were where they should be. So we moved my infusions from every 10 days to every 14 days. My hematologist believes this is what caused this to happen. My body just isn't able to handle 14 days in between infusions.

So, I am going back to every 10 days on infusions. All we can do at this point is watch closely for symptoms of another clot. And with a spleen infarction, the pain will probably last several weeks. My hematologist is very concerned but said basically the only thing they can do in this situation is remove the spleen if the whole thing dies off. He said with a partial infarction, the pain is the worst part. The pain, it can mimic a heart attack. It hurts to take deep breaths, etc. 

So there it is. Effective, immediately, I am back to every 10 days on infusions. I am to immediately call my doctor and head to the ER if anything changes. I am to take pain pills as needed for the pain. We will do scans again in a few months to monitor the spleen. 

Please, please, please listen to your body. If you have a weird or different type of pain, please have it checked out ASAP.

Thank you all again for the thoughts and prayers!


Monday, October 17, 2016

June didn't turn out as planned. Life can change in the blink of an eye.

I came to my blog, thinking "I haven't posted in a while!  I need to fix that!" Then I saw my last post and my heart sank.

You see, June turned out to be a very, very hard month for me.  Maybe it's time I posted about it here.

June 10th, I woke up early and flew to Pittsburgh, PA for the meet up that I would be speaking at for The Atypical HUS Foundation.

I got to my room and desperately needed a nap.  For once, I didn't check Facebook. Something just told me to sleep for a bit.  I wasn't sleeping long when my phone started ringing.  It was my Mom. She wanted to know if I had been on Facebook.  "No, no...I've been sleeping".

Jeff had passed away very early in the morning on June 10th. Before his wife had a chance to call me, it was posted on Facebook.  I'm so thankful that my Mom caught me before I saw the heartbreaking news on Facebook.

For those that don't know, my Mom was married to Jeff for about 10 years.  Jeff was my father figure for many years.  When Mom and Jeff were no longer married, Jeff still insisted that I was his daughter. Jeff moved away to Atlanta in my late teens. I visited there, he visited here. There were a few years were contact was very sparse. You see we both had addictions. We both put ourselves through so much.  There were times of hate.  But mostly, we loved each other as father/daughter.

Over the past year, Jeff and I had re-connected and had a strong relationship. We talked on the phone quite often....and for anyone that knows me or knew Jeff....those conversations were long winded. HAHAHA! A lot of my personality and sense of humor comes from Jeff.

On June 8th, Jeff and I had an hour plus conversation.  We caught up, shared with how we were both clean and sober, talked about life, and the future. Jeff told me how proud of me that he was that I was making a difference in this world. We talked about planning a trip this year for Ben and I to fly out to ATL so Jeff and MaryAnn could meet Ben finally.

On June 9th, Jeff went to work that evening as normal.  Very early in the morning on June 10th, Jeff suffered a massive heart attack at the age of 58 and passed away.

My heart shattered.  I lost a parent.

Next month, I am flying to ATL to spend Jeff's birthday with his wife MaryAnn. I can't wait to give her the biggest hug.  There will be tears, there will be laughter, and most of all...we have each other, just as Jeff would have wanted.



Wednesday, June 1, 2016

updates and pictures

It’s been a while since I have posted an update here.


We have had a lot going on.


In November 2015, we attended an Alexion aHUS luncheon in Dallas, TX.



In December 2015, I spoke at an aHUS meet-up in Phoenix. I shared my story with aHUS and represented The Atypical HUS Foundation. After the meet-up, Ben and I stayed in Phoenix for a few days to celebrate our 4th wedding anniversary. It was a great time!






The holidays were a bit sad this year without Grandma LaVerne there. It’s always hard to have those first holidays, birthdays, events...after the loss of someone you love.

In February, Mom and I made a quick weekend road trip to Louisiana to see family. It was so good to see them. Can't wait to go back!

In March, Ben got a new car!




In April, we traveled to South Dakota for Ben's cousins, Josh and Sherry's wedding reception.




In April, I spoke at a Carter Bloodcare event in Mesquite, TX at he Resistol Arena. This was by far the biggest crowd I have ever spoken in front of. It was very emotional for me. I was able to share my story with aHUS and thank the many donors that possibly helped to save my life. This event was for the top donors in 2015.




The weekend of May 20th, I traveled to Orlando, FL for an aHUS meet up. I shared my story and represented The Atypical HUS Foundation at this event. Orlando is BEAUTIFUL and the atmosphere is so happy there!!!



Hotel pool

Hotel pool

Hotel lobby from the floor I was on

Talking parrot in the hotel lobby

View from my hotel room


This weekend (June 3-6) is the very first conference that The Atypical HUS Foundation is putting on. It is in Nashville, TN. Ben and I will fly in on Friday, and meet up with my Dad. I’m so happy that my Dad is able to join us for this one! And, I can’t wait to meet some of the aHUS’ers that I haven’t met before.


Next weekend, (June 10-12) I am flying to Pittsburgh, PA to share my story and again, represent The Atypical HUS Foundation at a meet-up.

I am so honored that I have been given these opportunities to share my aHUS story and represent The Atypical HUS Foundation. It’s wonderful to meet other aHUS’ers and know that we aren’t alone.

Thursday, December 10, 2015

What's the difference?

I have had several people talk to me about my health lately and have said "I can't believe Crohn's gave you aHUS"....or "I can't believe you had to get your thyroid removed due to aHUS." 

The above are not the case AT ALL. So I wanted to take a few minutes to tell you the differences in these and my health history with the 3 of them. 

Let me first start this by saying, ALL THREE DISEASES ARE DIFFERENT!

Crohn's Disease - diagnosed 2012. 

https://www.nlm.nih.gov/medlineplus/crohnsdisease.html

Crohn's disease causes inflammation of the digestive system. It is one of a group of diseases called inflammatory bowel disease. Crohn's can affect any area from the mouth to the anus. It often affects the lower part of the small intestine called the ileum.

When I was diagnosed with Crohn's Disease, I had been ignoring it for a very long time. It wasn't until I had bleeding for more than a week before I contacted a GI and ended up at the ER. 

Because of this, I had a lot of scar tissue in the small intestine, which caused narrowing in the intestine. I got MANY obstructions.

In 2013, I underwent a lower right colectomy. This basically means they removed about 18 inches of my small intestine, my ileocecal valve, my appendix, and a few inches of my large intestine. 

I do still have some issues with my Crohn's, but for the most part....I follow the diet I know works for me and I keep up with my symptoms and see my GI regularly.

This is something that has no cure. 

Grave's Disease (autoimmune hyper thyroidism) - diagnosed 2013.

https://www.nlm.nih.gov/medlineplus/ency/article/000358.htm

Graves disease is the most common cause of hyperthyroidism. It is due to an abnormal immune system response that causes the thyroid gland to produce too much thyroid hormone. Graves disease is most common in women over age 20. But the disorder can occur at any age and can affect men as well.

After having crazy moments (literally), high heart rates, hot flashes, hair loss, drastic weight loss, major swelling on my neck; I went and got checked out. After multiple blood tests, it was confirmed that I had Grave's Disease. 

For 2 years, I tried the medications. I failed the medications. My Grave's was not treatable with medication. So June 2015, I had a total thyroidectomy. Since, I am on medication because I now have no thyroid to produce the hormones needed.

atypical Hemolytic Uremic Syndrome (aHUS) - diagnosed October 2014.

http://www.ncbi.nlm.nih.gov/books/NBK1367/

Atypical hemolytic uremic syndrome (aHUS) is a rare syndrome of hemolysis, thrombocytopenia, and renal insufficiency. Genetic mutations in the alternate pathway of complement are well recognized as the cause in more than 60% of patients affected by this thrombotic microangiopathy.

September 2014, I was on a medication for Crohn's (a low dose chemo drug) and had liver failure from it. Because of this, it triggered the genetic mutation I didn't know I had, called aHUS. This put me in kidney failure. Caused my platelets to crash. Blood counts dropped, etc. 

I currently get treatment for aHUS every 10 days via IV. This is something that has no cure. 


So, please take note that while there are some similarities in my diseases, they are not causing each other. They are all very different and are treated very differently.