I have shared this story on two different websites now, so I thought I would share it here. It is on Beautiful Beyond The Pain and on the Atypical HUS website.
I would like to share my story and to keep record so that I can reference it in the future if need be.
Please ask any questions you may have. This has been a VERY scary time for myself and my family.
My health story September 2014 to current
Early in September, I started not feeling
well. I was tired all the time, dizzy, getting headaches, brain fog, dark
urine, and overall not feeling well. I kept telling myself that I needed to go
have blood work done, but I kept putting it off.
Sunday, Sept 6th, I knew something
wasn’t right. So off to the ER we went. After waiting forever to see a doctor.
I had blood work drawn, got one bag of IV saline and was released with
“dehydration” and told my lab work was normal. I asked for a copy of the lab
work on the way out. Once I was in the car, I looked over the blood work. It
was far from normal. So I figured I would check with my GI and make an appt
soon. This was at a small ER that I thought I could trust, but not the one my
specialists were at. Just closer to home.
Monday and Tuesday of that week, I was
getting worse and assumed that I had a stomach virus because I was now vomiting
as well as now having bloody noses and worse headaches than before.
I worked through it on Monday and Tuesday.
Wednesday, there was no way I could even get out of bed. So I called in sick to
work on Wednesday and Thursday. Thursday, Ben made me go to the ER were my
specialists are. He knew something was bad wrong, but we weren’t sure what.
We get to the ER, I am projectile vomiting in
the room. Blood pressure and heart rate shooting through the roof. Nose
bleeding and the headaches were so bad that I could barely breathe through
The ER doctor recognizes me from my many
visits due to Crohn’s and immediately knows something isn’t right. I am yellow.
My skin, my eyes, etc. She orders lab work and heart monitors and does it on a
stat. She also asks to see the lab work from the other ER. This is where the
problem comes in. The previous ER only ordered simple, basic lab work even
though they were advised I was on chemotherapy medicine. I needed the extensive
Back to Plano Presby. The doctor is pacing
and waiting for the lab work. She is already working on admitting me, as she
knows something is bad wrong. This is about where I black out and don’t
remember anything for 7 days.
The next 7 days, I relive through what Ben,
my mom, and other family has shared. It was bad. I was in acute liver and
kidney failure. My platelets were low. My blood counts were all low. Extreme
migraines. Something bad was wrong. Something very bad. I was near death many
times during these 7-10 days. I started receiving blood transfusions. We were
later told by multiple doctors, that had Ben not gotten me to the hospital when
he did, I would have been dead within 24 hours.
Fast forward to 7 days later (Sept 18), I
have a bone marrow biopsy, kidney biopsy, and draining of the lining of the
right lung due to fluid. When the kidney biopsy comes back on day 8, it’s not
good. There are clots in my kidneys. It is immediately determined that I must
be treated for TTP, or Thrombotic thrombocytopenic purpura.
This is a rare blood disorder that causes
small blood clots in various organs in the body. The testing is very extensive
and requires 14-21 days for confirmation. We didn’t have time for that. If TTP
isn’t treated immediately, it will kill you. That night, Sept 19, the OR team
was called back in and into my room to do an emergency central line in the
jugular vein of my neck. I was given a local (lidocaine) and surgery was done
while I was awake. It was a bit traumatizing.
The next morning, Saturday Sept 20 at about
4am, I started treatment for TTP. The treatment for TTP is plasmaphoresis, or
plasma exchange. Basically, this is where your blood is pulled out of your body,
filtered, and your plasma is spun out as it is bad. As this is done, they spin
donor plasma that is clean back into your body. So out with your bad plasma and
in with new donor plasma. This transfusion process takes 4-6 hours to complete
and is done through the central line in the neck.
I did this process every day for 5 days. My
platelets started coming back up, I was still getting blood transfusions, but
things were starting to look up. My liver and kidney functions were improving.
I was feeling a million times better.
Sept 25, it was determined by all specialists
that I was ok to go home and to check in for blood work several times a week
with all specialists. I was doing ok. I was on new meds. I was relaxing at
home. And checking in with my doctors for multiple appointments. I was going to
This is where things take a spin!!! Nothing
is normal with my body. Just when they think things are figured out, my body
does a tail spin and puts all the specialists in shock again.
Friday, October 10, I was feeling weird
again. I had gotten my lab work back that day and my platelets had totally
crashed. So the renal doctor suggested I meet her at the hospital for direct
admit, just in case.
When I got to the ER, the ER doctor was
waiting for me at the door. He had already been educated on TTP and was told to
get me in a room ASAP. So that he did. I was admitted. My renal doctor finally
comes in and tells me that they had just received the final results for the TTP
tests done in September. The kicker? My tests came back negative for TTP. We
were back to square one.
I was in the hospital until Sunday, October
12th, then released to go home and rest. Not do anything except go
to specialist appointments.
Hold onto your pants! This is where the spin
Wednesday, October 15, I go to an appointment
with my mom at the hematologist/oncology office. I had a bad feeling about the
appointment. You see, Dr Le and I had not seen eye to eye many times and we had
rubbed each other the wrong way more than once. She is very abrasive and we all
know that I don’t do abrasive well.
This appointment, she came in the room and I
could immediately tell she was different.
She sat down and explained that she had been
racking her brain since I was in the hospital originally as she wasn’t
comfortable with the TTP diagnosis, but she had not been able to pinpoint what
was wrong with me. In a sleepless night, it hit her. I needed to be tested for
Atypical HUS, or Atypical Hemolytic Uremic Syndrome.
So, she got together with her specialists
buddies at a conference that Tuesday before my appt and presented my case to
them. She wanted to know what they thought. It was a unanimous vote between
them that I more than likely have aHUS.
Atypical HUS is scary stuff. It’s not for the
light hearted to read, for sure. My hematologist had never diagnosed it before,
nor had her mentors. There are only 300ish cases in the USA with the diagnosis.
Most people with aHUS go undiagnosed because it is so rare and they die from
end stage renal disease. I got blood
drawn for the genetic testing for aHUS on Thursday, October 16.
Because I have been in/out of hospitals, doctor’s
offices, etc…..I have no veins left. They are all blown and not useful. It was
taking 3-10 tries to get a vein for an IV or even a blood draw.
On Thursday, October 23, I underwent surgery
to have a medi port installed in my chest. This will give them one shot access
for IVs and blood draws.
On Friday, October 24, the genetic testing
was returned. I tested positive for Atypical HUS. We needed to get the ball
rolling on treatment, ASAP.
Atypical HUS is a genetic mutation. I have
had this my whole life. Currently we believe that the trigger factor that
brought it out was the chemotherapy drug that I was taking for another illness
I have called Crohn’s Disease. My body just couldn’t handle the medication and
this triggered the aHUS to come to surface.
There is no cure for aHUS. There is currently
only one treatment for it. It is IV infusions once a week for 5-6 weeks, and
then every other week indefinitely. This drug is called Soliris. It’s pretty
new to aHUS, so the side effects aren’t well known.
On Monday, October 27, I got vaccinated for
Meningitis, Pneumonia, and Tetanus. I also started very strong antibiotics to
protect me so that I could start the treatment before the vaccines fully
Wednesday, October 29, I started Soliris
treatment for aHUS.
While I would like to be very hopeful (and I
am trying to be), the rare-ness of this disease frightens the hell out of me.
The new drug is scary. Not knowing side effects are scary. Not knowing what my
future holds for this disease is scary.
This is my story to present date.
PLEASE DO NOT SHARE MY STORY WITHOUT MY AUTHORIZATION. I DON'T MIND IF IT IS SHARED, I WOULD JUST LIKE TO TRACK IT AND BE NOTIFIED AND TAGGED IN IT.
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.
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!!!
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!
(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.
Sitting at home trying to recover has gotten me thinking about things I would like to do and I've been making a ton of lists.
So I would like to put my goals out there and hope that it is the push I need to do these things.
So here we go.
My goals for this October are:
get healthy enough to return to work. Let's face it, I can't stay home long or the house will be remodeled and we will go broke from me shopping.
Drink more water and/or G2. Would like to drink 80-100 ounces of water and/or G2 per day. hey, I need the electrolytes in G2.
Take lunch to work 4 days per week.
make a Fall/Halloween wreath for our front door.
Decorate our front rooms (living room/fireplace/dining room) for Fall.
Read TEN books for pleasure. Just mindless reading. It soothes my soul.
Read TWO books on health/wellness.
Make Fall breads and desserts. I think I will start this one off tomorrow with some pumpkin bread with cream cheese frosting. My local family and friends should prepare for this, we can't eat them all.
Cook more meals during the week. Try new recipes. Chicken with goat cheese vinaigrette, orzo, and green beans. http://www.realsimple.com/food-recipes/browse-all-recipes/chicken-goat-cheese-vinaigrette
Shop around for a sectional sofa for our living room.
Buy bookshelves and organize hardcopy books.
Carve a pumpkin.
Go to a pumpkin patch. Clean out the garage Deep clean the following: master bedroom master bathroom guest bedroom office kitchen guest bathroom living room dining room Clean and re-organize pantry/laundry room
Start Christmas shopping!!!!!
*that's all I have for now, If I think of more, I will add them in*
I've had a lot on my plate lately and even more on my mind. Think it’s time I finally speak up.
I'm not well. I have two auto immune diseases and they are both pissing me off. I have Crohn's Disease and Grave's Disease. Look them up if you are interested.
Right now on top of that, I have a sinus infection. While that may not seem like a big deal to some of you. Think again for those of us with one of the above diseases or both.
I had to make a conscience decision today on whether to take the antibiotic to clear it up, or whether to let it "clear itself up". I wish number two were an option.
Instead, I begged the doctor not to send me to the ER because my heart rate was low and my O2 level was super low. I begged her to give me 30 minutes to get the O2 up as I knew that I was cold when I came in and those stupid finger monitors suck. I knew that I had just taken my beta blockers 2-3 hours earlier, so my heart rate was at its low for the day because the meds were actually working for a few hours. I won that battle. O2 came up, and well....my heart rate stayed at 60.
Instead, I went over the one antibiotic I could take and the new risks that are in research over this one med and my conditions.
You see, not only do I have Crohn's Disease and Grave's Disease, I also have a crazy high heart rate without beta blockers (which is caused by Grave's). I also have a huge inflamed thyroid....that is swelling both on the outside of my throat and the inside, which makes swallowing pills, food, liquid, and spit pretty exciting (this is also the Grave's Disease). I also have low potassium without medications (this is due to Crohn's disease). I also take chemo medication to try to keep my Crohn's under control. I also have days where my brain doesn’t seem to function correctly due to Grave’s. The Grave’s gives me tremors on my right side that are similar to Parkinson’s.
Because of these things, the simple antibiotic that I was given can be life threatening to me. As mentioned above.
“ The U.S. Food and Drug Administration (FDA) is warning the public that azithromycin (Zithromax or Zmax) can cause abnormal changes in the electrical activity of the heart that may lead to a potentially fatal irregular heart rhythm. Patients at particular risk for developing this condition include those with known risk factors such as existing QT interval prolongation, low blood levels of potassium or magnesium, a slower than normal heart rate, or use of certain drugs used to treat abnormal heart rhythms, or arrhythmias. This communication is a result of our review of a study by medical researchers as well as another study by a manufacturer of the drug that assessed the potential for azithromycin to cause abnormal changes in the electrical activity of the heart.”
Do you see that above? Because of this, I have to cut my beta blocker dosage in half so that I don’t get a “potentially fatal irregular heart rhythm”. Because of this, I have to monitor my blood pressure and heart rate every 2 waking hours to make sure my heart rate doesn’t get to high because I have to decrease my beta blockers or too low because I have to take the antibiotics. Win-win? More like suck-suck.
And before you ask, yes, I have to take the anti-biotic. Because as mentioned above, I am on chemo pills to suppress my immune system so that something else doesn’t take over. If I ignore a simple sinus infection, things could become VERY bad and VERY QUICKLY.
So for those of you that think I exaggerate or am lying about my conditions, research. Ask questions. Listen to me. Take the time to be my friend or my family, instead of talking behind my back. Either accept that this is my life and stand by me or walk the hell away, because I am tired of two faced “friends” or family. If you think this is about you, it just might be.
I do have some true family and true friends that have stood by my side for me and for Ben (you know who you are). And for those people, I am forever thankful. There aren’t too many of these people that have been there for us through these tough times, but they are there forever. Some of them I’ve never even met. Some of them have been in my life for all of it.
So, while this seems like I am pissed, I am grateful for those that show that they are there. Sometimes all it takes is a simple phone call or text or email or FaceBook message or comment. Just to say you are praying and you care.
I really really appreciate and love the un-conditionals in my life. Thank you!
It's easier to post my health updates here and then share the link then to post the update 20 different places.
So here we go....
Went to the Endocronolgist today.
I am still hyper thyroid and my heart rate was high AGAIN.
So we are increasing my dosage on the anti-thyroid pills (much more increasing and she may want to just remove the thyroid; she told me to start considering surgery) and we doubled the dosage on my beta blockers to get my heart rate to a more normal rate.
After that, I went to my GI.
My Crohn's is very aggressive and I have ulcers on my surgery site.....SO, I get to go back on my fun (not!) chemo pills, 6-MP (aka Mercaptopurine). I will start out at a slow dosage and work my way up to where I need to be. I have taken these before and I get extremely nauseous with them. so we start slow this time.
After 3 months (and another set of scopes) if things aren't better, I will pair the 6-MP with a biologic drug such as Cimzia or Remicade. Cimzia is injections that I would do myself. Remicade is an infusion done at the hospital via IV.
So keep me in your prayers! Hope everyone is doing well.
It's been a while since I have updated this thing.
What's been happening in my world of health?
Well, I had surgery for my Crohn's in August. This past Friday I had my first endoscopy ever and my first colonoscopy since surgery. Fun times, right? At least it's a good nap. lol
After 8 months, I learned that my Crohn's is back and in flare. This time, its attacking my surgery site. More fun. I have a follow up appointment next month and we will decide the plan of action for immuno suppressants.
I learned from the endoscopy that I have chronic gastritis, inflammation of the stomach. So add 2 more meds to the mix.
In other news, I have Grave's disease as well. Man, my body is having a party and its a dirty one. lol
Grave's disease is an auto immune hyper thyroid disease. So, I am currently on anti thyroid meds and beta blockers to keep the heart under control. I have had some very scary times with this thyroid issue. Including a few forced days off work per my doctor's orders.
My thyroid is swollen on the outside of my neck and on the inside. Having trouble swallowing pills and food.
The endocrinologist is having a hard time regulating the thyroid and there has been talk of removal. Not so much fun, but right now, I just want to feel better.
So there you have it. I've had a lot of people ask for a health update lately and this seemed like the best way to post it. Other than this, we have been spending a lot of time with family lately. It's nice living closer to the family.
If you could keep me/us in your prayers for health answers, that would be great! thanks!