Hey, what's one more doctor to see, right?...

i saw the cardiologist Monday...good news...they don't see a need in doing anything to my pfo. bad news...over the last few years Ive been getting dizzy faint like spells with chest pain. every time i go to the ER they do a chest xray and send me home. obviously to me they weren't looking into it closely enough. Ive went about 15 times in the last few years. you would think they would see that...well at least my cardiologist did. so he's sending me a neurologist to do an MRI on my brain to see what's going on. he thinks they could possible be seizure or mini stroke related. and since i have chronic migraines, the neurologist can help me with that too. who knows, maybe he can help with my insomnia too. So Im going to do some tests to check the oxygen flow and blood flow in my heart and see the neurologist and hopefully then we will know more. ill keep you posted. Pray for good tests results, some relief and for me to continue staying positive. that part gets hard when you just turned 27 a week ago and all of this is my life and it's for life, not goin anywhere lol..i have my bad days just like any other but i know through the power of everyones prayers Im going to keep pushing through and keep my head and my spirits up! God will get me through. He's the reason Im still here after all Ive been through and he's the reason ill keep going! so keep me in mind when you pray! :) Thanks to all my supporters! and please keep my friends Raechel from Michigan and Aly from Louisiana in your prayers as well. they mean the world to me and i know the pain they're suffering from their Crohns and related health problems. Both also have a child and they need to be able to be strong for their little girls. Help them do that by praying for their health and well being! I love you girls!" Crohnies for life! :)

Update: One Year Followup Coming Up Fast

Sorry it's been so long since I've posted. Of course as you know, things should be slowing down as the process continues. I celebrated my one year 2nd birthday aka the one year mark of the day i received my sister's cells. So here's how I'm doing: I've been great Crohn's wise up until the last few weeks while I'm having a minor flare. Since I'm not on any Crohn's meds, I can't complain but they are keeping me on my transplant meds longer than usual. Since my transplant, I have been diagnosed with Fibromyalgia, Severe Anxiety Disorder, Manic Depressant, Bulimic (ongoing, I'm just finally able to speak out about it), PTSD (from my previous abuser of over 2 years), Asthma, a conginital heart defect called PFO, basically a hole in my heart, Osteopenia,chronic insomnia and migraines (apparently caused by debris getting into my brain from the PFO) and a bunch more. My memory is still off and sometimes I find myself not able to recognize where I am, even in my own home. Sometimes I find it hard to find the right words. That gets very frustrating, but I'm hoping as time goes on it'll wear off. I have made the decision to get my tubes tied this year under the advisement of my gynocologist. It's a thought I'd considered for years but didn't think any doctor would do it because I'm only 26 and have no children. But with my crohn's as bad as it was I'm terrified it will get worse and hurt me or the baby, not a risk I'm willing to take. Also no fybromyalgia meds are approved during pregancy which means I'll be in 10x the amount of pain im in now if not more. Also with osteopenia, carring a baby means broken bones, including in my back and spine. With all the risks involved, I can't imagine bringing a child in this world with a mother under my health condition, not to mention what's hereditary. This is just not an option for me. It's not a decision I WANT to make, it's one I HAVE to make and at 26, I'd consider that a fairly mature decision to make. A lot of weighing the benefits vs the risks and unfortunately the risks are too high. and there's always adoption. I've always wanted to adopt anyway. There are millions of children in this world who need good homes and good parents and one day maybe I can provide that. Well, theres the update. Hope to not keep you waiting so long for the next one!!

Sorry For My Long Break

Hey guys! Wow! I am so so sorry for not updating in forever!

My Crohns is currently flaring but not bad. I go to Chicago for my one year followup in November so we will see more on how thats doing!

It has been confirmed I have fybromyalgia  and its so severe theres not much they can do for me. Im trying muscle relaxers now and they help a little.

Still battling insomnia regularly and am having bad luck with my osteopenia. AlsoIve had a cough since February so Im seeing a pulmonary disease doctor Wednesday..say some prayers! Im also starting with a nee therapist today for my anxiety, eating disorders, self harming, and ptsd issues.

Lets see...guess thats all for now! Will update again this week!!!

Love all my supporters. Thank you and God Bless! I hope each of you is blessed as much as I have been!

7 months post transplant already!

Im still having bad daily migraines. Im taking a headache prevention med daily but still getting them at least once a day :( Im calling my PCP tomorrow about it. My cmv lab came back negative finally! So yay for that! I will go off the valcyte now and back on acyclovir. Hemoglobin is still low and Im seeing it..aka bruises galore! My body wrap helped me instantly lose an inch and a half in my waist alone and 2% of my body fat! How cool?! Plus it helped tremendously with my arthritis pains!! Now i just need a solution for my abdomenal cramping..which isn't constant or completely unbearable but it does hurt really bad. Except Im not entirely sure if it's crohns related or female related..very frustrating. I have 5 more body wrap treatments with my next one on Thursday. So maybe those will help with my pain too. They also detox you so that'll be a nice benefit as well. If any of you want more info about them, let me know and ill tell you all i know. I definitely recommend them even if you're not in it to lose fat cells. They work wonders for joint pains and back pains too. They're hot as everything and you sweat alot but its worth it to feel that good after it. I actually felt better than after a full body massage haha My diarrhea is getting better but you know how it is...good days, bad days, worse days. At least now Im having only good and bad days instead of bad and worse days! God is good

Spring is here and Im dying to get out and enjoy it

Been feeling sick the last few days. Nausea. can barely hold food down. But i think there's just aminor bug going around so... Plus my white count is only 2.1 right now  and my hemoglobin has dropped to 9.9 again. Which isn't too bad for me but still low.Also my hair has stopped growing. I only shave like once every couple of weeks and its still just stubble. Plus my eyelashes are breaking again too. Just like after chemotherapy. Does anyone know what could be happening?? I told my GI, my PCP, Dr Burt and my ob gyn but none of them have checked any of my hormone levels or anything. I mean i don't mind it but it not normal so of course it concerns me. I asked my gyno to check my hormones so see if Im experiencing early menopause from the chemo but he said We could check now but lets wait a year or two! Im like what!? Im 26! Its time for me to know if Im able to have kids!! So needless to say Im seeing a new dr. Plus come to find out, my mom saw him too and he's known for not taking patient concerns seriously and missing things. Wish i knew this prior to my visit! Like i need extra bills! Lol

crohns and birth control

Im over the pneumonia except a cough. I just found out that birth control pulls may not be as effective in patients with crohns because of the absorption issues. I switched to the patch but am changing to the depo shot next week. Regardless of my sex life or lack there of lol i want to be careful because a pregnancy could trigger a flare and i can't risk that right now. Or ever really. Ive been through too much. But with Gods good grace and love i will get back to being normal soon enough! :)

6 month follow up complete

My colonoscopy showed several pseudo polyps. This is because i was so severely ill and this is my bodys reaction to healing itself. They shouldn't be cancerous however they do show signs that it is very likely i will develop colon cancer at some point in the next 15 years or so. Dr Barrett (GI) in Chicago is moving to work at the university of Kentucky. He is adamant about taking care of me and doing cutting edge blue dye cancer screenings every year or more. So i will be going to see him in Kentucky from now on. I don't mind. He's an incredible doctor.Dr Burt however infuriated me. I haven't spoken to him in 6 months and he literally spent my entire visit with his hand on the doorknob trying to rush me out because i was his last patient of the day...after i already came in an hour early! and he told me not tp worry about my arthritis, it'll go away! Wow. So Im supposed to suffer in the mean time?? And he told Mr not to worry about my ulcers in my colon...they'll go away on their own!...what?!? Needless to say he called me back the next day and decided to take the advice of Dr Barrett and put me on a short course of Uceris, a mild asteroid with few side effects.   

look at what i ate! 6 months post transplant!

Bone marrow spread! Adventurous! :)

My hair is growing!

6 month followup: day 1

Ok so Im in Chicago for my 6 month followup. So far Ive had labwork and saw Dr Barrett in GI. He said my pneumonia is worse than they thought and my lungs sound really bad. Also he said my hemoglobin is really low and my arthritis is bad and needs the attention of a top rheumotolgist. I did the Movi prep for my colonoscopy in a few hours. I handled it better than usual and didnt even throw up! Of course i didnt drink it all. The point where i knew even one more sip would make all of it come up was when i stopped to be safe. I will let you all know the outcome of tomorrows testing!

Pneumonia

My cmv has caused pneumonia so now Im battling both. Just one of the luxurious side effects of the transplant. On a lighter note, Im being taken off some of my transplant meds so thats good news! And Im off to Chicago in just a few days for a followup! I have scheduled a fertility and hormone consult here in April since Dr Burt's nurse told me that checking my fertility is not part of their study even though i heard they did it with one of their previous male patients so i don't know!but my body hair has once again stopped growing and my menstrual period has all but disappeared. So we will see!

CMV

im startng to feel the CMV symptoms now.

runny nose
coughing
sneezing
muscle aches
joint aches
ear aches
migraines
cramping
nausea

i was worried i had pnemonia, which cmv can cause, but im almost certain im judt experiencing the cmv in general.

closing in on 6 months...

im almost at my 6 month followup. im doing amazing. i have been a little nauseas this week because i tested positive for CMV..i may be going in public a little more than i should. i cant wait for that part to be over. i have had some serious depression issues lately so hopefully going to chicago for my followup will help get me out of my rut. im also fighting a col, arthritis and migrainespretty bad but thats about all!

Update out of hospital

I was rushed to the ER Tuesday because I felt perfectly fine and then it suddenly felt like something exploded inside of me. They admitted me and I was put on vancomycin even though my labs came back negative for any infections. I started feeling better by Friday but Dr Burt told the doctors to go ahead with a colonoscopy and with an ultrasound on my liver and pancreas because my liver enzymes were high.

Ok here's the results: I got magnesium, my hemoglobin dropped to 8 but I didn't get a blood transfusion. They stopped my voriconizole and cell cept. Liver and pancreas are fine! My liver enzymes will be monitored!

My colonoscopy showed only 3 ulcers, a few polyps, significantly reduced inflammation, and the part of my colon which was once full of inflammation and ulcers nearest my small bowel is now completely clear.

In other words... The stem cell transplant in only 4 months has almost completely put me in remission!! God is so good and I can't help but cry at how blessed I feel right now!!

Update from mid january

Ok so I saw my GI dr. I'm going back on vancomycin for c diff even though my test came back negative, it could still be living in my body. I'm on Ativan plus pexeva to help with anxiety and sleep. I went to sleep before midnight lastnight and slept until 2pm and feel amazing today! I don't know if its because I was exhausted or because of the Ativan. We will see!  I'm also now on something for my migraines which is helping too. And I'm taking carafate to help coat my stomach and reduce the burning I'm having. So far so good!!

Note: I was also told to stop taking the phenergan for nausea because it is linked to causing me to have restless legs at night!! Thought this info might help some of you!

Four months post transplant!

Well I'm still being treated for c diff since my Crohn's symptoms have been suddenly and significantly worse this past week but I'm feeling better. It could very well be because of something I've eaten since I'm now eating anything I want now.. I'm thinking I should slow down a bit and allow myself to heal more. I also had a sinus infection and eye infection but its gone now after some antibiotics. I'm having issues sleeping again so it's back to the doctor for something to help me sleep and help with my anxiety since I'm having coping issues as well. We are also changing around my birth control and hormone meds because I was bleeding for 2 months straight and right after my blood transfusion, my hemoglobin dropped suddenly once again. But one positive thing is I'm never in pain from my Crohn's. I experience some burning in my stomach but I think it's from my acid reflux. Well! That's all dr now!