🏥 FINALLY DIAGNOSED 🏥 (5.17.17)
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- Опубликовано: 21 окт 2024
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I don't like how Mary's condition is being compared to someone else's. I have an atypical and quite severe form of pots and suspected gastroparesis (I take domperidone and it helps relieve nausea by the way). I don't always communicate how much I'm dealing with and like to be strong and appear okay on the outside. Mary is so strong-willed and positive and just because it might not seem like her gastroparesis is as severe as someone else's it doesn't mean that it's not as bad. It might actually be worse but how do we know? It's just important to keep in mind that comparing people's chronic illnesses can be quite hurtful and insensitive, and Mary and Peter are so inspirational in how they overcome everything that comes their way.
So glad you got a diagnosis finally . Getting a diagnosis can be often so hard and frustrating
I'm so pleased the bacteria was identified!! It's been so long!
Chronically Jaquie has gastroparesis well and she was just admitted to the hospital yesterday because she hasn't been able to eat a meal for 2 weeks. Can you guys keep her in your thoughts? She has a channel and daily vlogs her life as well. Check her out. I am very glad you got a diagnosis and are able to at least start a treatment plan. Sending all the love and support your way.
Dasteil4rver, I will keep her in my prayers. Doctors don't know what I have. My symptoms are a little similar but at least I'm not throwing up. I have lost 16 pounds. I feel bad for her and everyone that's going through something like this.
Dastiel4ever I watch her vlog she as well. I hope they can get her through this to be able to eat again. I'm tube fed. Have GP too, I can eat small bits but not enough to live on.
Dastiel4ever I love Jaquie and Judd! I'm sorry she's in the hospital but glad she's getting the help she needs.
Ella Neruda I don't or didn't even see the comment you are referring to. Maybe that's a good thing? Thanks for the comment anyways.
Domperidom main ingredient I believe is motilium. Tiny white pills,,used to be able to buy it without rx from other countries.
I am so happy that you've got a diagnosis. It is good to know, good or bad. Isn't it funny the messes our dogs can make. Just like children sometimes. Ollie is always kinda serious about his job but sometimes he relaxes and reverts back to a puppy.
My school had a bake sale for cystic fibrosis today and I couldn't stop thinking of you guys!!! Im so happy that I watch your videos so that I could explain cf to my friends:)
I am over the moon for you Mary cariad!! So much progress today in potentially sorting out your issues! May HaShem be praised! xxxxxxx
Yay for finally knowing what the Microbacterium is!!!
Gastroenteritis can be rough. I have had did now for over 6 years and I opt'ed against a feeding tube or TPN as treatment. I would rather deal with the vomiting/weight loss/no appetite then with the with the tubes. The biggest problem for me was the pain that I was having with it but I still did not want feeding tubes as I was also dealing with my daughter having feeding tubes for other reasons. However, my GI doctors finally convinced me to look into electro-simulation and I was implanted 6 months ago. I know its not for everyone but it made a whole world of difference for me. Now I get normal emptying times and my testing is all coming back normal. My appetite is back, I have gained weight and I am no longer having pain, or nausea or vomiting. Every now and then I notice a little tickle when the stimulation fires off but otherwise its been nice to have a seemingly normal functioning GI system.
Pam Duncan Do you mean gastroparesis? I'm surprised your doctor didn't force a tube or TPN on you. Usually if you're vomiting and losing weight they really worry about malnutrition which can lead to organ damage/failure and other long-term issues. I was given no choice but to have a feeding tube. Luckily I don't currently but it's a possibility if I can't get my weight up on my own. I'm so glad to hear that the stimulator helped you. My doctor uses it as a last resort so I don't think I'll have that option 😕
So happy for you! My husband went 10 years before he got a diagnosis for his rare disease.
Thank you for the drone footage. I grew up in Mass and I miss how beautiful it is. Your drone shots are such a treat!
The drone footage was amazing!!!!! Love it when your parents visit, you always seem so happy and at peace. 🤗 Bye Mary's parents. Wishing you the best on treating the bacteria in the future Mary. ❤
l don't think l have ever clicked on a video so fast! so happy for you Mary! love you!
I think it's so weird that you guys don't have domperidone in the US, as an Australian pharmacist I dispense it almost daily for 2 main reasons 1 exactly what you're using it for gastric emptying/nausea and 2 to increase breastmilk supply... Hope it works for you! But do keep in mind you can still get the Epse muscle reactions with this one as they both affect your dopamine levels
Callie Thompson I am in Australia and I am on it for delayed gastric emptying
The same here, living in Australia 🇦🇺 and my son is on it for gastric emptying (he has cerebral palsy and had a feeding tube/button)
Wonderful news...once you know what the issue is, it's a lot easier to find a solution. Hoping for the very best results for you.
I have a chronic (now terminal) illness related to scar tissue in my abdomen. I get very dehydrated and sick and last few days have been bad so my nurses came in today and put in fluids up and gave me anti sickness injection at home to keep me out of hospital. My nurse said you keep smiling and I said 'don't forget to laugh everyday' and told her about you both. She's going to find you tonight. You always brighten my day. Xxx
Oh my gosh that drone flight was so majestic!
Poor Mary your going through so much! Also I'm happy your finally diagnosed so that you can fix this
So glad you finally have a diagnosis! And I'm glad you got to spend more time with your family Mary :) And Peter, keep the drone footage coming! It's beautiful!
I am so glad you got an answer finally. Waiting and waiting and waiting is SO brutal. Hang in there!
Peter should start a drone footage channel. It's so beautiful and relaxing. (Because I'm sure he isn't busy enough😉)
Why do I ALWAYS get teary when you say goodbye to your parents?? I am seriously the biggest sappy mess ever lol I just love your relationship with your parents, it's beautiful.
YAY!!! I'm so glad they could finally speciate it out!!! Now to pray there's a medication to get rid of it that you're body can actually handle! Praying for you both and that your sweet parents made it home safely! ((Hugs))
Looks like you had a productive visit/clinic day. Good luck with getting the new med & starting your J-tube again.
Great news Mary on finding the name of the bacteria, now they can really concentrate on which antibiotic, woohoo!!!! Going in the right direction. I have some news- I'm a Gramma as of yesterday!!!!! Our son and daughter in law have a baby boy, he is sooooo adorable!!!! This is our first Grandchild and I am so very excited, thrilled and very blessed. :-) Can't wait to hold him in a few weeks- they live in CA while we're here in KS- thank goodness for FaceTime!!!! Love and hugs to the 3 of you, see you tomorrow!
Glad you were able to get your diagnosis! Hope that the feeds go well.
I have to o to MGH and MEEI tomorrow for appointments and i always get "nervous belly" a few days before until I actually walk in but strangely, seeing these videos of Boston hospitals calmed me down a bit!! have a good day!!
having a name for whatever is ailing you, is SO much better because at least you can look for treatments. I am currently walking down the same road. I found out about 9 months ago I have several autoimmune diseases, and I'm also undergoing testing for muscular stuff. mri, nerve conduction tests on my legs, and all kinds of stuff. but just knowing the name for the things I have is a nice piece of mind. good luck, mary, in your fight for life and your fight against that bacteria (that I'm not even going to try to spell)
That's how it is in Texas but all in one day! chilly and then by lunch we are sweating!
Christie Randall Also starting the evening hot as heck, running the ac, getting cool until the outside also cools off, then waking up chilled.
I had to turn on the ac in my Austin Texas apartment as I was outside covering my plants with plastic for the freeze coming in one night last December.
Hey there! I'm Deidra, and I also had Regalin administered for nausea a few years ago when I was in the hospital for a Depakote migraine protocol, because I have had a singular chronic daily migraine since I was 11 years old (now 20). I had a dystonic reaction to the Regalin as well, and I remember it was a terrifying experience for me. I've been dealing with a variety of chronic illnesses (migraines, fibromyalgia, POTS, and some other autoimmune disorders) since I was about 7, and it is always great to see how positive and forward-looking you both (Mary and Peter) are, and how you support each other while keeping your faith. Always being ill can be really difficult (an understatement), but those hard and painful times seem to make the good days so much better. From one chronically ill girl to another, I am sending prayers and hope for your adventures in life.
Stay awesome and stay strong.
You guys, I really DO love the solar sidewalk lights! :)
Yeah for validation and a diagnosis!
I love your drone shots Peter.. your vlogs r informative.. I do not have CF but I have chronic asthama so I can very much relate to d coughing n breathlessness... I love your spirit Mary... May God bless u both...
Love from India 😘
Mary, did Rachael ever need an extra food tube?
Yay! Great news that the mycobacterium was diagnosed, Mary can restart feeds, and there is another drug option for the GP. Happy to see you guys happy 😊
The puzzle time with your parents was so coo! How far do your parents live from you?
Hello! I really admire you for taking it all in stride! I'm glad your parents got to visit! I'm sure the flowers will be beautiful along your fence! I am still praying for all of you!😁
Could you guys start putting the names of a diagnosis or new device etc in that videos description for easy googling, please? Medical names are hard to spell so it would be awesome to be able to easily highlight and search this bacteria instead of trying to guess!! Obviously, you can't make a big long list in every video but the new info would be awesome for the information box for those of us that want to do a bit more research!! Thanks for sharing so candidly. Praying you can get the meds you need to kick that bacteria's butt!!!
Marisa S Here you go: mycobacterium colombiense
thank you!
I am glad you are able to restart your feeds. Just go slow, our daughter had sma syndrome after her surgery, so she was not able process her food properly either for a long time. So just stick with it. :) I hope it all works out for you.
I just love the drone footage!
It's always good to have the diagnosis, even if the diagnosis isn't good. Can't get treatment without the diagnosis. Best of luck with the treatment, I'll be keeping you in my thoughts x
Yay for answers! It's a step in the right direction. Hope you can get the medicine from Canada without to much trouble!
We were unable to get it--the medication for my daughter because it was too costly for us to get a Canadian MD to write the Rx. Hopefully you will find a way to get it. Glad you finally got a diagnosis on the 'bug' in your lungs.
Mary I think that's great you call your parent's "Mommy & Daddy" I call my parents the same thing!
Happy Birthday Peter!!!
Have a wonderful birthday!!!!!
Happy almost birthday, Peter! My birthday is there 29th! But I'm a lot older than you will be. we have children older than you two! Love your drone footage. I've never been to Massachusetts and probably never will, so you are giving me sores of a beautiful place. Thank you! A Mary, I'm so thankful they finally diagnosed your bacteria! praying this medicine works!
Yay you found out what bacteria it was! I'm so glad that you found it out, So now they can start treating you:)
I went to Canada years ago for Domperidone. In Canada you have to have an RX from a Canadian doctor to get a legit med. Tip: At the border do not say you are going to Canada to get drugs. They told me to pull over and searched my car. After half an hour they looked at my information from the University of Michigan. Do not feel nervous- another reason they pull people over. When I would simply say I was shopping I had no problems with border control. Good Luck!
Glad there are good things happening re diagnosis of bacteria and possible treatment. Praying all goes well with formula feeds Mary 💜
how exciting! my mother in law planted blue strawberries! I'm so excited to see them!
Your vlogs make me so happy to watch. Your faith and personalities. make me really try to over come my own obstacles. Stay strong Mary and Peter. Also peter do you have enough whipped cream?
I'm happy you have a diagnosis! If it helps, my mother had TB that caused some obvious issues, but they were able to put it into a latent state and it doesn't bother her at all.
As for Canadian medications, so long as it's not a controlled substance like a painkiller, the FDA will look the other cheek at things brought into the US. I had to do it when I had a lapse in coverage years ago as US medications are too much. Just be careful of what pharmacy you choose - there are many that are huge frauds. But I'm sure you're more than capable of finding it all.
Sending lots of love. You are such an amazing family!
I love your mom! shes so sweet and such a good sport (my mom would be like yeah turn off the camera haha)
I loved your Mom, and Ollies dance break in the back seat!! :D I love purple beans.. but just a little note, when you cook them.. they turn green!! The first time I grew them I thought there was something wrong, but it's completely normal!!
Domperidone was originally created to induce lactation. It wasn't so great at that, but they discovered it actually did help with gastroparesis, but I think that since it is not what it was originally intended for, the FDA is not approving it for classification purposes as well as the expense. Heads up, you just might experience lactation! :)
my son is on domperidone and it is a life saver his sickness has calmed right down on it. fingers crossed it works for you. x
I am so so glad they figured out what you've got cookin' in your lungs.
so glad its been identified, praying for you. Ive had microbacterium abcesses. its a long process and tricky to deal with, I've since completed my drug course and gotten rid of it!
I have gastoparesis too. It also makes me never want to eat and throw up everything whole. I was allergic to Reglan and I ordered domperidone as soon as it arrives from Canada. It has taken a month so far. I don't know if you can do it, but I drink apple cider vinegar and it has helped so much.
Alexandrea Colson you can get it through a compounding pharmacy
Brittney K That is very expensive here in the US. Since the FDA doesn't approve of its use, it isn't covered by insurance drug options.
I have never heard of compound pharmacy, but I was going to get it online. It is going to be 50$ a month without shipping and handling.
Alexandrea Colson I tried the compounding pharmacy route through a local, private pharmacy, (not a cvs or hospital) that did compounding. It was 15-20x more expensive than the online pharmacy and much less convenient.
Alexandrea Colson This is who I used: www.inhousepharmacy.vu/c-105-Breastfeeding.aspx
Free shipping to US and they did offer expedited shipping (for a fee) 5 years ago.
Good luck getting your meds!
Mary, you have the cutest family ever! Loved seeing your parents a lot. Wish I could hug my mom only ONCE again in my life (she died in february after a short but gruesome battle with kidney cancer).
Peter, your drone shots are amazing! America is so beautiful...
Love from Germany,
Das Rabennest
I have gastroparesis and at the the time I was diagnosed you were unable to get that medication and couldn't take Reglan. Mine was so severe I had to have multiple surgeries and procedures done. It finally helped the problem and but now I have other complications due to the surgeries. My lower digestive system is also very sluggish as well which also causes problems. And now I share your problems of battling gaining weight. I have heard that medication for gastroparesis is really good. I hope it works for you. And that you're able to gain some weight. But I keep on going. Your videos are very encouraging and I love watching them. They make me think that if you can go through everything that you're going through that I can go through what little I'm going through. Thanks love your videos. And thanks for all of the Ollie shots.
I was wondering if you have tips you can share about ways that you take care of your skin and hair. I am fairly new in dealing with a chronic health issue and finding the energy to do little things is hard but I know I need to find a new "normal" and taking care of my health outside of the chronic disease as well as mundane things like cooking and cleaning. Do you have a hair and skin routine? Just curious and would love a video that you share some of these types of tips. Living with chronic pain, fatigue, digestion issues and so forth, have thrown me off completely and I just want to find a new routine that I can handle now. Hope this makes sense.
It's so strange how they don't get a copyright infringement with the songs they play on cds and the radio??
What a glorious sunset! Thanks for sharing guys!
I didn't know domperidone isn't available in the US! It's a big part of my treatment here in Canada for gastroparesis. Hope you're able to get your hands on it!
OH WOW!! That sunset footage!!
Mary...Can you use THC oil to help increase your appetite?
Maybe even edibles if she's open for it
Did you start your new med? My husband is supposed to start it once it gets approved for him to order from Canada.
OMG ITS INSANE THAT YOU ALREADY HAVE 132k SUBSCRIBERS I WAS HERE SINCE 1,000 ❤❤
I had the same reaction to reglan. I hate that drug! I took domperidone with no side effects.
Kerri Birdsall I guess that reaction is common? I had the same problem with reglan.
I had the same horrible reaction. I live in Canada and Reglan (generic name metochlopramide) is sold under the brand name Maxeran. The reaction is actually fairly common in young people and is called "extrapyramidal syndrome" or "EPS" which basically means that the drug can cause dystonia or parkinson's-like shaking and tremors. I was given it when I was vomiting severely during an Addison's crisis (they didn't even know that my adrenal glands were not working at the time so they tried to just treat the symptoms), and the nurse pushed it really quickly into my i.v. line. Within like 10 seconds of it hitting my blood vessel, I immediately became extremely anxious and paranoid. I could feel my heart racing and pounding out of my chest and my eyeballs felt like they were popping out of my head. Then the uncontrollable shaking started, and my muscles lost complete tone and went stiff as petrified wood. I then had this really strange sensation where I juts could not sit or lay still. I had to constantly be moving parts of my body like my feet I would rub along the metal sides of the stretcher bed and I kept changing positions every 2 seconds. It got so intense that eventually I kept. limping in and out of the stretcher and running up and down the hallway with my i.v. pole dragging behind me and I was nearly tripping on it. All of the nurses and doctors kept turning around and starring at me... I must have looked like a nutcase Lol. But the worst part was the fact that the ER doctor kept saying there was nothing they could do to help me but just let the drug wear off and leave my system. I was stuck in the ER for a total of 6 hours waiting to be brought up to a room upstairs and as soon as I got up there, my nurse immediately said that he wasn't going to get the on-call doctor to order Benadryl because apparently that was going to help me. He thought it wa s just crazy that they left me like that for so long in the ER when all they had to do was give me Benadryl! They have to give it by i.v. push really quickly and a higher-than-normal dose (which I guess can be a tad dangerous which is why many doctors and/or nurses choose not to give it) but within a few seconds, I felt immediateelief in my neck and then down into my shoulders, and within less than 10 minutes I was completely passed out sound asleep. It worked so amazing!
I’m getting my nj tube out tonight and scheduling for a j tube placement so seeing your journey with it helps relieve so much anxiety about what is to come for me 💕
I'm so glad you planted them!! :)
Can you give us a list of what you carry around in your car? That sounded interesting. Silly, I know, and your subscribers are always asking for stuff but if you get a chance to read this and get a chance to share that, I will appreciate all your efforts! Thank you!
I'm a dork. Your dad was aiming his phone at the camera to take a picture, and I smiled and waved. Hahaha.
I have chronic gastroparesis as well. I was also on reglan and it didnt work for me either. It helps to hear others sharing their experience so thank you!
How many snap peas did you grow? Me and my daughter made the mistake of growing ours to close and they all started strangling themselves. 😩
Purple beans for the win! I grew them a few months ago during our New Zealand summer.
I take domperidone and get on with it really well, hope it works for you!
I feel the same way regarding my illnesses if I have a name to whats wrong I feel more in control.
Cheyenne Nicholls-Pecino me tooooo!
Peter I just have to say that sandwich looked so yummy! 😆 I couldn't help but notice lol.
Gotta love sandwiches!
woah peter look at those muscles!!! love you guys 💕💕
Omg I also had a dystonic reaction to a medication called maxolon (Australian anti nausea medication). You're a tough woman and an amazing roll model Mary
If you were open to alternative treatments you could try taking colloidal silver! It's a very broad spectrum antibiotic that's almost impossible to create a resistance to. I'm pretty sure people can nebulize it too for lung infections. Just a thought! Hope you get everything worked out🙂
Domperidone was a life saver for my GP. Was a little tricky with it only being available in Canada but was well worth the work in the end! Reglan didn't work well for me either so hope this one works better for you. Good luck and God bless!
Hope everything stays well...I also hope your feeds go well! Love you Mary and Peter!
You're so good with the drone Peter.
Always sad when the family leaves. But looked like Ollie loves his cuddles with your Mum.
I think the drug is domperadone. I used to have it for sickness with Scleroderma. It didn't do anything for me. I have GI issues too. I hope it works better for you.
Hope the fuel is tolerated better this time. Slow and steady is the key, eh?
Take care xxx
Happy birthday Peter!
Can't wait for my walk on Saturday! Colorado Springs Team leader💜💙💚❤️
The Reglan was giving you the muscle issues?? My husband had to take that years ago and had the same problems!
Glad you finally have some answers.God is good. Love you all. I am so glad you have your parents visiting you.
I am from Canada and I have been on Domperidone a few different times. they use it here often with people who are refeeding from eating disorders to help with gastric emptying because they are not used to eating much.
fun fact it is also used to help create breast milk for breastfeeding mothers who need some help with milk production.
I hope you can get a hold of it and that it is helpful for you.
Hi Mom and Dad! happy belated Mother's day to Peter's and Mary's Moms! :D
OMIGOSH! So, I'm in on DOMPERIDONE for a few years now and it works great for me...Different stomach issues but I bet you'll find it good too! Here in Ireland my nurses all call it Dom Perignon, like the champagne because it's that good!!! It's pretty much the same thing as Motilium in case that makes it easier for ordering, but I prefer DOM bc it's not coated so it kicks in faster when you really need it. So happy that you finally got some answers and good luck with the new meds!!! 😃😃😃
ty for explaining the mommy daddy thing
"Don ParaDon" (sp?) sounds like a wine or champaighn or something lol. Happy that you found all sorts of stuff out!
Happy that they found out which bacteria you have . I hope that you can now gain weight and get treatment !
I wish I could have seen Ollie making mince meat out of the toy. Next time get some video of it for a good laugh. I actually teared up to watch your parents leave. My sister, mom and I used to cry when my grandparents would leave and of course Gramma would cry too. Great drone footage Peter!
Yay for a positive test! I will be praying that the Dr's find a treatment that will work and is well tolerated! What a sweet visit with your parents! I bet the goodbye is always bittersweet!! Enjoy your weekend friends! ((Gentle Hugs))
Do any of your extended family members have CF? Seeing as both you and your sister got it. It would great to see a video from your parents about raising kids with CF!
Dom Perignon? That should really help !!!!!!!
michiganmom857 Especially by iv
michiganmom857 It's a really good medication, my mom takes it.