IamA 27 year old female who in January of this year had brain surgery, and now just found out that I will need surgery to fix both my kidney and replace my aortic artery, because of a condition that only 200 other people have.

How are the hospital bills?

Crazy. .Thank goodness for insurance.

So YOU'RE the one who's been causing my heath insurance rates to climb! (Just kidding. Hope the surgeries are a success and everything works out for you.)

https://www.youtube.com/watch?v=KqOBBhRpnxE

seriously though. they charge like $3K/day just for the bed! fuckers.

Yea, their hospital is so nice for a reason!

How are you?

Today is a good day beside, the normal chest discomfort. How are you?

I'm good, happy to see that you're good. Worried about surgery?

Not yet. I know once I know the full details I will be a bit more, and once it gets closer I will but right now I am kinda about just being in the moment.

Why do you have chest discomfort?

From my blood flow being all thrown off. Pulse has also been a little higher than they would like today... it's also allergy and asthma season so it could be many things... they know about it though and it's monitored.

Do you remember dreaming during your brain surgery?

No, the only surgery I can remember dreaming during was my now considered failed kidney surgery as a child. I was about 5, and had a dream about dinosaurs. They were super colorful and I was able to ride them. I guess even when I was waking up from being under I was talking about it.

They probably used a drug called ketamine. It is mostly used in children for sedation because it puts them in lala land, hence the dinosaurs. When it is used on adults it can cause them to freak the fuck out and become combative.

They gave my dad Ketamine when they cut his hand off due to frostbite (in 1983). He said he was awake for the whole procedure, and watched them cut it off finger by finger, but didn't care since it wasn't his hand...

That has to be an extremely interesting experience.

That would make sense, I would fight them too, I had a scope done a few years ago and them had to put me fully under because i tried to pull it out.

What's a scope?

When they stick a camera down your throat to get images.

D:

Sounds horrible! Why'd they do that?

check why I was having stomach issues. This time around I was fully knocked out for it. Your throat does really hurt for a few days but others than thats it's fine.

Strangely enough, I had a Gastroscopy done on me while fully awake (Russian healthcare at its finest) and while it was a bit distressing from a psychological point of view, I had no sore throat whatsoever, just a tiny bit of discomfort that went away in a couple of hours.

damn, yea that would be distressing. I am not sure why my throat was so sore... maybe because you are asleep vs. being awake but that would not be fun.

When I had surgery as a kid I dreamt too but haven't since despite 3 other procedures. I watched the surgery happen from above, in the corner of the room. I dreamt that I was rolling around uncontrollably and they had to get a second bed to hold me. I think of that happened now it would be more discomforting.

My guess who the drugs like the person said above. I know I am just know for making witty comments before they knock my out. like "this tastes horrid, have you tried it? you should try it"

Sometimes people are awake for brain surgery

I was knocked out, they also removed part of my spine so I had to be under.

You know the feeling when you read something and cringe a little?

The question is what part. :P

The removal of part of your spine is what got me

It did not know about that until after... which was prob a good thing, it would have gotten me too.

removed part of your spine? that's sounds intense, can you elaborate how and why?

Its called a spinal laminectomy, and it involves removing part of the bony roof of the spinal canal (the lamina) to increase the size of the spinal canal and relieve pressure on the spinal cord and nerve roots.

What part of your spine did they remove?

They did a spinal laminectomy, which involves removal of part of the arched, bony roof of the spinal canal. It is done to relieve pressure.

What's the first thing you'll do once you are released from your upcoming surgery?

I have not planned that far, but I feel like it should be something cool... any suggestions?

Where are you going to be?

I live in Illinois, surgery will be in Chicago.

Come celebrate with a fellow Chicagoan!

Party time!

Chicago Recovery Party!

"party over here"

You sure like your family guy.

It's most likely because it is on TV right now.

Nice! I work in the medical district in Chicago. Will it be one of the big three hospitals downtown in that area? If so, check out the italian street festival in that area from August 14-17.

Yes and if I am their during that time I will check it out!

Then the obvious answer is to go eat some Hot Doug's before they close forever on October 4th.

NOOOOO!!!

Best case scenario, what will life be like when the surgery is over?

Everything is suppose to return to normal... they don't know what issues I am having that are Nero related and what are everything else related. Some stuff such as balance issues, and mild dizziness I will have forever but I am attempting to fund for a service dog for that. The hope is that after this surgery I wont have stomach issues and that my pulse and such will return to normal, as well as they can find in my foot again after I move around.

Did your doctor ever think it was lupus?

If he did he or the team did they never told me, but it was the running joke between a good buddy and mine. I would be in the hospital going through test for the day and he would text me, "Maybe it's lupus?"

As a hopeful medical doctor with an underlying desire to sincerely help people, how helpful have the medical staff (doctors and nurses, etc.) been during your endeavor?

My biggest advice to you is listen to your patients. Especially if they have an extensive medical history... we know our bodies a lot better than someone who just got our case and that is no offense to that doctor. An example of this is several months ago I was hospitalized and and had a urine test come back off. As a child I had my kidney fixed for stenosis and was again having some of those symptoms. I told the doctors this and requested a test for this. The doctors said "no" and that there was "no way this can happen again, that I was way too young" several months later I went to a bigger hospital where they listened to me and yes that was one of the caused of my current sickness.

The doctors and nurses where I currently go are great. I love all the staff up there, and wish I had gone up there sooner. The have a great deal of knowledge when dealing with things that are on the "rare" side to the point of where even the tech who draws your blood knows what you have.

SO MUCH THIS. There is a big difference between a patient saying "I read on the internet X and I think it's that" and saying "I know X about myself and it means this."

I sadly have many, many examples of doctors refusing to believe what I was telling them and either miss something or make it worse. I, too, have found that smaller local hospitals tend to be the worst at not listening. However, the worst doctor category for not listening would be neurosurgeons.

Glad you're with a better team now!

I agree, it is hard for them and now with Webmd and such. I am super compex so I know a lot... when I had my ultra sound done and said hey thats stenosis they lady thought I was a med student... not even close, but it does help if they listen just a tiny bit.

thank you!

for all the webmd hypochondriacs out der

webmd does always think it's cancer...

What is your outlook on life?

Right now it's roll with the punches. In life you kinda just gotta deal with what comes. You are however allowed to be pissed off, or sad, or whatever you just cannot dwell on that for too long or it will drag you down. I can say that I am still a happy person, and that I still laugh and makes jokes, but I also have my bad days where I am pissed off at the world and want to be left alone. Especially when I fell like I just keep getting knocked down, but you have to try and keep moving forward.

Did you get any special powers?

I am still waiting on those, but I have a feeling they are coming soon.

Is this Syndrome due to genetics? And if so, what are the chances of passing it to future children?

Because there are only 200 people with it they do not know. I do however have two other things that can be passed down through genetics. One is 50/50, the other for which I had the brain surgery for they do not know. As of right now I do not want children of my own but want to adopt. I do not think my body could handle children and I also do not want them to go through medically what I have go through.

Need a kidney? I've got a spare

I will let you know, but you have to be 0- first. =)

AB+ sorry.. I'll take any blood you happen to have lying around though

The red cross says I can't donate because I have a mesh plate made out of cattle marrow, but there is always the black market....

This is awesome. You are part cow! Science, you crazy.

I totally agree!

With your heart surgery will it be a one off surgery or will you need to get the aorta replaced regularly? My daughter (8 months) has severe aortic stenosis and will need 5-7 in her life time. All the best for your surgeries and I hope that you recover quickly!

Because it is outside my heart the success rate is a bit higher, or so I am told. This is the second surgery I will be having on my kidney and when I was a child I was told it would only be one, so who knows. This time around however this did a much more intense scan of my body to check for thinning of my arteries to make sure nothing else was going on, so they could catch everything.

I hope the best for your daughter, and as few surgeries as possible. The good thing about medicine is that it is always advancing.

Have you tried spanking your kidney or charging it for internet access for chores down around your body?

Also, you might want to make sure your kidney isn't hanging around that good for nothing appendix, he's a really bad influence for the little thing.

I tell it to behave all the time but it does not listen. The appendix had it's very own round of testing ordered by the GI doctor! He is doing just fine. Unless they are sneaking around behind everyone.

You gotta back up you words with actions. Spank your kidneys.

Side note, if your doctors ask who told you to start hitting yourself in the kidneys... it wasn't Reddit.

Hope to see a post recovery AMA!

Doctor: "Why is your side bruised" me: " I have resorted to spanking in into good behavior"

and yes when I finally do have something happen I will do another AMA!

Do you plan to make a meeting with these 200 other peoples affected by your condition?

It would be really cool but I have no idea how to even start that. I am sure their is a way though. Right now their is not even a foundation.

What was the recovery process like from the brain surgery?

Really long. I am still considered recovering, but things are finally getting to were I can say I have reached a new normal to where I can live like this. I had so many issues after my surgery and am still on a lot of medication that I hope to be off one day, but it is a lot better than before.

How has this affected the relationships you have? Have you lost some people you thought were good friends? I have a chronic illness, and I know how it can add stress to relationships. I hope everything goes as smoothly as possible from here on out! :)

It defiantly puts stress on relationships. I have also lost people that I though were really close friends and than they just stopped talking to me, even though I tried talking to them. It took awhile for me to comes to terms with that is their issue not mine. I also had some people that I did not consider that close who really stepped up.

The biggest thing right now is not staying in the "sick" mindset, because I know their is more to me than that. Some days I feel like it consumes me both emotionally and physically, and other days I feel like I hardly even think about it besides "oh it is med time"

I have no idea why but I have read every single one of your responses In the voice of cortana

Ninja edit

Have you ever met anyone else with the same condition?

Good luck and enjoy your day!

My best friend has NF like I do, and I recently came into contact with someone who a Chiari. I have never meet someone with Mid Aortic Syndrome. The doctor I see has amazingly operated on one other person with it before, and she was 19 at the time. I don't remember how many years ago that was. There is nothing really out their on it though. All I know it that it is rare, there are about 200 cases of it, and you do need surgery for it by the time you are 40 or it will cause heart failure.

NF as in Neurofibromatosis? And Chiari as in the cerebellar malformation? I'm a third year medical student and I just saw my first NF case a few weeks ago!

Yes and Yes. What can I say I am one special person. NF 1 and Chiari 1 btw.

Holy crap that's scary. I also have a very rare condition. So little is known about it too but its not life threatening. Hope everything turns out good for you :)

Thank you, I wish the same for you.

Can you elaborate on how your body tried to "fix" itself?

Yes. It pretty much grew new blood vessels and turned smaller blood vessels into arteries. One of the doctors I see studies this but he says he has hit "gold" with me because he has never seen it this intense before. For instance one vessel that you would never see on a measures bigger than an artery. and vessels around my spine have grown bigger. My Aortic artery at one point is about the size of a coffee stirrer so it was adapt of die.

Wow! Thanks for answering and i hope all goes well!

thank you!

I an in pre-nursing school. That is called Angiogenesis

Thank you! I know he dropped a name, he brought me back to their office to show me some pictures of the test, they had taken over 1000 images but I did not remember what it was called. They were just all really excited about the finding but trying to hide it because it was like "she is kinda really sick" They lightened up though when they realized how cool I found it. I did however look a bowl of spaghetti at my kidneys they had tried to grow so many different pathways!

Your photos aren't public, just so you know.

What was your favorite test they performed on you? If you don't know what to call it, could you describe it?

Thanks, I just made them public. I do not know what I is called but pretty much they put goggles on me that blacked everything out. Theses goggles also recored your eye movement. Then they had you fallow a light as it moved up and down and across, as well as a picture. They were doing it because I told them I know at times my eyes do not tack right, but they could not catch it with just fallow my finger. This guy caught it and has it recorded. Funny thing was it is only my left eye that does it and now I have a proper glasses script that should help with it.

That sounds kind of fun as far as medical procedures go.

It was. The good part is that even through I have to travel several hours I do go to a really good hospital, and I can say that even the guy you did my two hour MRI found a way to make it enjoyable and I hate MRI's.

[deleted]

He was funny, so funny. And made sure he could do whatever he could to make you at ease. Also music helped a lot.

I once drank radioactive chocolate milk, then got on a bed and watched Porco Rosso while they used the radioactivity to analyze my digestive tract. Hospitals are strange places.

I remember that crap from childhood... nasty... I got in trouble for trying to dumb in town the bathtub drain.

how these things have affected your sexual life?

It's nonexistent but that does not mean the doctors have said "don't do it" I think they just don't want me to get pregnant, because right now this is a concern.... http://mchoi7.files.wordpress.com/2013/02/in-defense-of-comprehensive-sex-education-l-qdoaxm.jpg

Have you gotten to meet/talk to/ exchange dialogue with anyone else with the same diagnosis?

No one with Mid Aortic Syndrome. My doctor has operated on one other person, but I have not asked about the possibility of getting connected with her.

So what kind of cool testing did they do?

I wore blackout goggles that i had to fallow a light but recored my eye movement. I was hooked up the a machine that pumped up like a blood pressure cuff and than they tried the find the pulse in my legs and feet. I had some ear testing done but they would plug an ear but a device behind the unplugged ear and than start the test... you would ear sound in the plugged ear.... at one point I started to feel like I was in some sort of SciFi movie.

Were you ever afraid of becoming a different person as a result of brain surgery?

yes I was. Like I knew my frontal lobe was not being operated on which is where your personality is, but I still had the chance of stroke and such. I decided not to dwell and that and push forward with getting better. I knew the people who stuck with me, were going to be their no matter what.

You are so brave, thank you for your response and your time

thank you!

Hello and thanks for doing this ama! My husband was diagnosed with Arnold Chiari Malformation type 1 a year ago and had decompression surgery toward the end of last year.

My question is how did you know something was wrong after surgery and that you needed further testing? What sort of symptoms did you have? I ask because my husband has had kidney issues and random rapid arrhythmia. It's frustrating when the doctors run ekgs and ultrasounds and say everything is fine but you know it isn't.

I'm glad to hear they know what's going on with you and that you can take the necessary steps to move forward with treatment. Thanks for your input and time!

Edit: clarification

I am a persistent little devil. After my surgery I had a gut feeling something was off. I live 4 hours outside Chicago and the doctors around here were giving me the run around. I went to a bigger hospital and they still said " well we don't know." As a child I had seen a specialist for my NF in Chicago so I called his nurse and they got me in. About 5 minutes into the nuro exam he did not like what he say and ordered more tests and more doctors. The more tests I had the more specialist I ended up seeing. Eventually they ordered the right round of tests together and they found it. My advice is to always be " Patiently, Pleasantly, Persistent"

For over 2 years i had a gut feeling and an mri later bam atnold chiari

Always fallow your gut, and if you doctor tells you no, keep going. I just spoke with a women with Chiari who the doctor told her she had to be in a wheelchair before he touched her.... she is now headed up north.

Hey I am 40ish guy with something different .. yet similar I have and ascending aortic aneurysm I have not had the repair surgery for it yet and Im hoping I never will have to. I do get crazy tests twice a year and take a ton of meds. I also work in Cardiology.

Do you know what the procedure will be like ?

is it something you have to have asap or will the watch and wait for some signal from your body?

Im guessing you would need anti clotting / blood thinners after?

How much do you understand about how your Cardio Vascular system works?

I remember how scared I was at first .. I had to do a ton of research and reading to kind of calm myself down. even though I already had extensive experience in the field.

I still get a scared .. sort of time bomb feeling sometimes.

I am very curious about the procedure.

Please mark me as a friend and PM me anytime. I am guessing I am going through many similar things to you.. with that uncomfortable ? in the back of the mind all the time. I would be happy and even grateful to talk with you anytime.

Best of luck with everything

My kidney has an aneurysm. One of the things they talked about possibly doing was removing the kidney cooling it, fixing it and then reattaching it. I have been learning more about the whole system, what makes mine unique is that my stenosis is outside the heart but still of the Aortic artery. 99.9 percent of the time it happens inside the heart.

I have a team of doctors and from what it appears right now they are kinda bickering on what they want to do. Some want to wait and see, others want to treat it. The aneurysm is big at 2 cm and needs to be treated. I will def mark you as a friend. =)

How long have you been in treatment/known about these problems?

I have been being treated for my brain issues since December. While I was placed on a meds to help with some heart issues around March they did not find it until last about 2 weeks ago and than do a test to confirm it with a round a scans until last week. The original test was just an a special kinda of ultra sound. So while I was able to look at it a say "hey thats stenosis" by reading what the blood flow was doing. they did not know how bad it was and how until and MRI and a CT scan. They also had to do some odd testing on my legs and feet to check blood flow.

Whether your religious or not, I'll be praying for you.

thank you!

How does it feel to be one in 35 million?

like maybe I should play the lottery more.

be well and good luck :)

thank you.

As someone with chiari malformation, can you talk to me more about the procedure to decompress your spine? How is your mobility? The healing process? How well did it help the symptoms? Is your life affected by it or restricted by it?

I am 7 months out I can say I am now semi getting back to normal. I do have a lot of issues that others did not have. I have balance issues, and i cannot look up or down without getting dizzy. I also have issues with bending down to pick things up, and with my left eye tracking at times. It's not that it is a lazy eye but when it gets over stimulated it gets whats called nystagmus. It's all livable stuff but can make the day a little harder at times. The surgery was done when they removed part of my skull and than but a patch over it and than did something called a Laminectomy.
http://www.mayoclinic.org/tests-procedures/laminectomy/basics/definition/prc-20009521

Have the doctors given you any idea of how confident they are that the surgery/surgeries will go well? Getting an aortic artery replaced sounds pretty bad.

You're a very brave person to be willing to talk about this so casually. Thank you for doing this, and good luck with your recovery!

Thank you. It depends on what they want to do. If they want to wait a year and see and wait for my blood pressure to start getting bad or if they want to be proactive and tackle it now. Some think it wont get any worse other think it will. My kidney no matter what has to be treated, so they are kinda bickering right now. I would rather be proactive. The surgery itself is pretty successful as they know of which people vitals and what not returning to normal after.

What are your thoughts on death?

It happens. Do I want to die? No, but we can really control that no more than we can control the sun going up tomorrow. I think what is important is that we try to be the best person possible in the moment we are now, and let the rest unfold as it does.

Are your disorders all related? Like can they now say, "Oh, that's why you had the first two issues!"

There is a like with some people having NF and having mid aortic syndrome but also there is only about 200 people who have it. With Chiari no. I am never one to point a finger a blame one thing though because with science you can never know.

If you had to pick one, would you say that your greatest wish or your greatest fear is more often on your mind?

Given your uncommon perspective, what would you say each is?

I would say greatest wish, and that is just for stability. I would do anything just to be able to work a normal job, not have to take 20 pills a day, always be on the phone making doc appointments. I don't live my life out of fear because I don't really see the point of it. We really have little control over what happens to us, apart from trying to met our basic needs ect. But for once getting some stability would be really nice.

How did you endure a two hour MRI? Open or tube? I just can't imagine...

I know some things can't be done in an open one. Even being in an open one really, really bothers me while my husband will take a nap in the tube.

I had some meds that helped, and no it was not opened. They also gave me music to listen too, which was a HUGE help. I also had an amazing tech. Like this guy needs an award. By the time I went into the tube all worry was gone. He had me cracking up. He called the MRI the beast and when I asked if it had a name he said "well I always call it beast, but its big old Bertha now!" He was also good about warning you when the dye was coming and when the test was starting again so you were not jumping all the time, and was still cracking jokes through the test. I think it would have been a lot worse if it were not for him.

He sounds amazing!! Really special! I'm glad he was there for you.

I have freaked out in the tube before. My last MRI/MRA/MRV was in an open machine. This place allowed someone back with you. My husband and the tech both had to calm me down more than once. I had plenty of meds, too, but I still had a really hard time. I'm terrified of feeling trapped (no fear of tight spaces, just not being able to escape if I need to - 15 years ago I was in a wreck and couldn't get out for what seemed like ages but witnesses said it was only seconds) and I have some kidney issues that cause excruciating pain during things like IV contrast.

My first one I had to leave and come back with meds. So he was great to have. I am seriously going to see if their is some sort of award they can get.

What do you do in your free time? Also best of luck.

I am a big reader and movie watcher. I also really like cooking and baking. Me and some people close to me have some food allergies so it has been fun learning how to master cooking and baking to a point to where people cannot tell that something is gluten, egg, and dairy free. I am also a big animal lover. For awhile I was in the works of getting a service dog to help me, but than lack of job and funding stopped that. I tried fund raising but it was a bust so it is kinda on hold so now, but when I can I like to stop by the animal shelter. I went through a phase where my hearing sensitivity was really bad but my meds were upped and it seems to be working better so I hope to be able to get back their again soon.

Any fun post doctor traditions?

none quite yet, but I am a big Marvel fan and just to make myself feel better I always wore some sort of Marvel shirt ( Capt American, Avengers ect) for all my testing and doc visits. I started to become know in some departments as the Marvel girl. At my hospital you can communicate with your doctors online, and one of my favorite doctors requested for me to wear a specific shirt when I saw him which I found really funny and cool. They are really good with reaching patients even though they are a huge hospital.

edited bc my spelling was horrid

I love the Marvel theme, that is such a great idea! Plus with all your medical conditions it sounds like you were dropped into a vat of toxic waste as a baby, so who knows, maybe superpowers will be coming soon?!

That is a joke with one of my friends... that we are waiting for the superpower to activate at any point.

Marvel girl. Sweet. Highfive 👋👋. You just gave me the most brilliant idea. I will wear my Captain America shirt for my surgery this Friday!!

Good luck!

What medications are you on?

I will spare the list because I take about 20 pills a day. I am on two meds for my stomach. A med for my ear because I have a crazy hearing sensitivity, a heart medication, a medication for headaches, a medication for depression, and than one for anxiety, a medication for nausea and vomiting ,which is a side effect of the meds and from one of my conditions. Pain meds when needed. Lot of the meds are taken more than once a day.

Do you get more pros than cons out of your medications?

Yes, I am lucky enough that I work with a team of doctors who if I say can I try something new I don't like it. They listen. It would prob not work for my heart meds, but it does for everything else. Also some of the meds have really changed my life. The one I am on for my ears have made it some I do not have to wear ear plugs 24/7, and I no longer have a high pitched squeal in my ears anymore.

Do you have any tattoos?

yes i have two. I have an arrow on my right forearm as a reminder that I am a fighter. It also on the right side as meaning to protect/ defense and is pointed down for peace and direction. There is also an anchor with a bird and a star on my right ankle in memory of my mom who passed from cancer when I was 9. (the bird and the star) The anchor is a reminder that even when things feel like they are going to shit something is always holing us down.

What does the surgeries to repair your kidneys/aorta entail? How long of a recovery is expected after these operations? Are there any permanent impacts that you will have to deal with?

Recovery would be at a mim three months after a week in the hospital. To fix the kidney they would remove it, cool it down, fix it and then reattach it. The artery would be fixed by replacing it with either a vein from my leg, a donor one, or a fake one.

The hope would be that everything including blood flow to my legs and such would return to normal. I would have to have regular scans still and most likely remain on my beta blocker though.

Did they consider a stent for the aorta?

Best of luck. The doctors these days can pull off some crazy stuff, as I'm sure you're already aware.

Because the aorta is thinning and not blocked they can't. Right now it is the size of a coffee straw stirrer. Stenting it or trying to ballooning it out is to great a risk to cause a rupture.

I have a rare condition as well, do you try and make the best of it?

Yes, I think it is the only thing you can do. I am sick of being sick, but I am too stubborn to throw in the towel. How about you?

I enjoy playing with the kids in the hospital during my visits. I always try to get them to smile. I go to a children's hospital because I have a physician studying my condition and a specialized surgeon.

My head doctor is a children's doctor but the adult and children's are right by each other. The Children's also has crazy tight security.

I'm sorry this is happening to you. I'm sure it's hell. Is there anything that eases the fear/anxiety/frustration? What simple advice could you give someone who is very sick and hospital bound?

Having some good friends and some good outlets. Also being ok with "Hey my anger/ fear is ok" " I accept my anger/ fear"

I am not in the hospital as of now but have spent time in them, they are hard and can be lonely. It is important to not be afraid to speak up, they are their for you... it what they are getting paid for. Also things like TV, books are your friends. I cannot tell you how much amazon prime, and Netflix and helped me this past year. My tablet has also been amazing. It's really the small things. You will also remember the good nurses and techs for years to come, more than your doctors even. The ones that take you outside or help you do things you though was too soon to do. Nurses and the techs are amazing Also it does get better so hang in their. =)

I noticed in the last post you said something about having to regain motor skills and walking and talking. Was it like starting all over again? And how have you come along with it all?

My talking was because I developed a stutter and was extremely frustrating. It took a lot of work and some therapy sessions but my speech is normal now. When I am really tried, super mad, or stressed the stutter will come out. It is something I will have for life but now I have the tools to handle it. There are also sometimes randomly world I have trouble saying, but if you hear my talk now you could never tell, except for maybe a speech slur here and their.

Walking just took time. If I had had my surgery where I am now I would have been in physical therapy but the original place wrote me off, so by the time I got to them I was at a point to where pt would not help me but I could have used it. I just had to work on balance and stuff at home. My balance still sucks and I cant look up or down without getting dizzy, but its a lot better than it was before and I have not had an instance when I have gotten up and almost fallen over in awhile.

That's great. Was it hard to keep high spirits through it all?

At times it was. To be honest it helped that I had a lot of pain meds in me, but also that I am a laid back easy going person. I think if I were not a roll with the punches, get back up keep going it would have been a lot harder.

Glad you're doing well and recovering!

thank you!

After these next upcoming surgeries, hoping that they are successful, will you be able to live a normal life?

I will always have some limitation, but it will be pretty normal.

Do you experience side effects from any of the medicines you take? If so, how bad are they?

Some of my meds can give me nausea, but I do have another medication for that. It is at this point hard to point to one drug and say this is it because I take about 20 pills a day.

Don't know If your comfortable answering this but which hospital are you at? I worked and trained at Rush and was just curious if that's where your were?

I am not in the hospital right now but when I am getting testing done and for my surgery I will be at University of Chicago.

This will sound rude but I don't mean it to be.

Have you ever given thought to how much effort has gone into keeping you alive? Have you ever wondered how many more people might have, with some small portion of that effort, been kept alive instead of you? Do you feel like you have a duty now not to waste your life but instead do something awesome to help society?

I do not feel one should have to justify their life over another. All life has the same value as another.

If anything I feel that I have a new way of seeing life. I don't get mad when stuck behind a slow driver, I take my time more, and value things more. I have always liked giving. In college I studied a field so I can give and one day I know I will. To quote Viktor E. Frankl "For the world is in a bad state, but everything will become still worse unless each of us does his best.” So yes I plan to help, but everyone should. ― Viktor E. Frankl

What is your life like, are you able to live a mostly average kind of life or are there limitations?

It's pretty average but my doctors are trying to get me to realize that I will always have limits. I just wont listen. I was just offered a job but when they found out my doctor did not want me limiting past a 20lbs the said they could not do it. I also can't be on my feet so too long, and still have trouble walking really fair and with balance and such. I don't like to live life with limits though or the things you cannot do, my doctors are just worried I will end up hurting myself I think.

Hopefully you will be back on your feet and not need limitations soon.

Thanks! I hope so too.

What makes you take your mind off these things/what do you do for fun?

Friends really help, also when I get really pent up I play the walking dead shooting game, to vent. Also just getting out and going for walks. I really enjoy reading and movies, I would love to say I do these super crazy things but when you spend your life growing up sick you kinda have to take a step back, which sucks but there is still a lot of awesome stuff to enjoy. I also really like baking, me and my godson both have food allergies so it was fun learning to cook and bake and get good enough to where people could not tell stuff was gluten, egg and dairy free.

What are your thoughts on obamacare?

While I do not think it is a fix and that we need something better I can say that for people like me who have these crazy medical stuff that insurance companies are like "hell no" it has helped. The cost of medical expenses in the States is crazy compared to that of other countries. Partly because we are private and insurance companies, doctors, and even patients and choose what for example when they are getting a knee replacement. If you were in the UK places put a bid in and the the winner of that bid is what they go with, and that is partly why it is cheaper. I am not saying that is what the US needs. I have talked to people who have the same genetic disorder that I have that wait 4 months to get a scan when they are having issues in the UK and in the US we wait a 2 weeks tops.

Obamacare has helped people but it has also hurt people. I do not think it is fair to fine people for not having insurance. The biggest issue is that all he did was made it illegal for insurance companies to say "no" to you but there is not much of a price difference and if you need good insurance for something you still are paying a LOT out of pocket each month. States are not forced to give the poor insurance it is still up to them, so it is still leaving people trapped.

I really wished you lived in the UK and got your treatment for free. Did you ever consider that as an option?

or Canada, trouble is I don't have much money to get their, but yes I have considered it. UK, Canada, Finland.....

I live in Australia and all I know about obamacare is that people bitch about it online all the time. Could someone please explain what's good and what's bad about it?

this video tell you what it is and what it is not.... better than I can explain it... https://www.youtube.com/watch?v=wBr3fniyb4w

Maybe answer some of your question. I know one of the issues is that people think it is too socialized.