45 Pills A Day Keeps My Son Alive
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- Опубліковано 19 чер 2023
- After my 17 year old recently had a lung transplant surgery, he now has to take more than 45 pills a day to stay alive BUT it is absolutely worth it. I go over all of his medications AND show some of the routine, tips, and tricks we use!
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My teenage son had a dental surgery in October 2022 triggering a rare autoimmune disease we didn't know he had (GPA Vasculitis). This caused bleeding in his lungs which ultimately impacted many organs but damaged his lungs to an irreparable point. He recently had a double lung transplant. He has given me permission to share his story ❤️
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That wave of emotion realizing that you almost lost your son but he and the rest of your family, were able to persevere, is a such a gift. Many people don’t realize how precious and fragile life is until it is too late. I wish Lonnie Jr many years of good health ❤️❤️❤️
This. This is exactly it.
Stephanie, now is the time that it will hit you. Take care of yourself as much as you can. If you're not well, nobody is ❤️🇬🇧
I totally agree ❤
I’m so happy Lonnie is home and you are vlogging again. I’m also so happy to see all the support you guys received while he was going through this terrible journey. The love, the go fund me and Amazon list the support was incredibly and deserved. He’s home now he’s doing so well and I choose taking a million meds and staying alive and stable over leaving my family behind any day. The good news is all those meds are temporary and the ones he will take for life he just needs to be responsible with taking them as he transitions into becoming an independent adult. Can’t wait to continue to watch the journey.
Thank you so much!
That Shorts Video Of Lonnie Taking His First Breath With The Tube In Is His Chest You Must Of Been So Happy And Proud Of Him . THAT Was So Heatwarming And Special To See Him Take His First Breath With His New Lungs . ME AND MY SPECIAL NEEDS DAUGHTER IS SO Proud Of You Lonnie Jr And You Stephanie It Is So Nice To See Him Come Home Without Any Breathing Tubes And Oxygen And To See Him Walk Around And Here That He Made His Own Food And It Does Matter If He Takes 45 Medicine Pills A Day At Least Your Son Gets To Live His Life.
Oh my god, I'm so sorry, I understand it must be stressful keeping up with that schedule of medicine, I wish the best!
I am so glad Lonnie Jr. is back home settled and better. Also that pill trick was genius for him! He is very clever. Life comes with obstacles and instead of letting it defeat him he finds ways to handle it. Lonnie Jr is strong and so are you!
Your truly the definition of Super Mom and as a mother we do go on auto pilot when our babies need us.
He looks so much like his daddy and Lonnie Junior. Happy little boy
I’m overwhelmed just hearing the different names & what they do to help him. I’m so sorry this happened to him but happy he survived everything his body has been through. Thank goodness for modern medicine. It’s a wonder what doctors can do now. I’m in awe. Prayers for u & ur family.
My infusions of retuxan for Dermatomyositis cost to much the copay is more than we can afford. The company is giving them to us for free. My Doctors had to do a lot but they got it through. I need it to live with my lung disease also caused by an autoimmune disease. Glad Lonnie is doing so well.
Wow when you were in tears it gave tears too! Aww! It made me emotional😪I want to cry with you!
Stephanie, as a nurse, I commend you for knowing so much about all of Lonnie’s medications! Great job!
I asked a lot of questions but they did multiple education classes before he was discharged lol
Youre truly an amazing and wonderful Mom, not only to Lonnie Jr but all your children . I'm so happy things turned out for your beautiful family. Sending love ❤ and Blessings to all.
I totally understand. My son had GPA.🙏
Oh my god, I’m glad he’s okay now and getting there x
I am so happy that Lonnie Jr is home and recovering 🙏🙏♥️
Wait...did you say 30-40 k a MONTH? That means Lonnie's medication costs about TWELVE TIMES my annual salary. That boggles my mind. Worth every cent.
Mine too. Now I understand why they require insurance approval before listing.
My best friend's husband his had his liver for well over 30 years. Cheers to a long healthy future for Lonnie Jr.
I'm glad to hear that Lonnie jr is doing better still keeping him in my thoughts and prayers every night here in New Brunswick Canada
I hope you have time to go through the trauma you experienced, regain yourself again and find your new world is safe
Praying for your beautiful and inspirational family!!!! and thank you God for all the miracles HE has 🙏🙏🙏worked
Omg I was crying so hard seeing your videos! I am so sorry you both had through this but I'm also very happy he is here today im so very grateful for the one who saved your sons life i know I can see you both are amazing people/parents. And I still can't stop crying. 😢 I love you guys !
It’s so awesome to see he’s doing so well. ❤
You are such a great mom ❤ I've been following your channel for years now and I'm so so proud of you & your son for making it thorugh this! ❤
Thank you for educating us on Lonnie’s medication! Made me emotional when you talked about how far Lonnie has come!
So happy you are back home with the fam ! ❤❤
So happy for you all now…prayers are continued ❤
You are such a great mother! I am praying for Lonnie and your whole family.
I have been following you for years thank you for sharing your family’s story especially how sensitive this last year has been I’m so grateful that he’s doing a lot better and to continue the road that he’s on you are a great mom much love ❤
Im so happy for all of you guys and I just wanted to let you know that I truly hope your all okay mentally and emotionally to, there’s so much riding on physical health especially in these situations but the mental health can be just as dangerous.
I hope healing continues going well, physically and mentally for Lonnie Jr and your whole family x
Continued prayers for Lonnie and his recovery and for all of your family moving forward.❤
I started watching your videos last year and I love them!! I'm a single mom and I haven't had to go through what you have but my heart feels for you so much. As mom's we survive the hard moments just to be able to keep going it's only when we stop and look back at the situation we realize how strong we had to be and how strong we really are.. you and your son are amazing and your all truly blessed.. continue the hard fight and remember crying is ok even necessary at times 😉
So happy for you and your family.
Love you so much, Stephanie!
I am so glad Lonnie JR. is doing much better. I will continue praying for him. You are an awesome person Stephanie and an inspiration to people like me who are on the Autism spectrum.
Wow, thank you for sharing. All the time & heartache that went into the last 7 months sounds like a lot, but worth it. Your emotions are real & valid. :) Thanks for sharing the medicine. I'm sure that will help people who may be going through something similar. That's great that Lonnie Jr. is doing better.
Wow. That’s a lot of meds!! Your lucky it’s covered!
SO lucky
I’m so glad he is getting better ❤
Glad Lonnie home 🙌🙌🙌
I’m over the moon happy to know he’s improving daily! Love you guys 💗
Dr. Gray and the Transplant team do a great job. They helped me through my double lung, almost 3 years ago. Just take things one day at a time. Remember, lung transplant is a treatment and not a cure.
LOVE Dr. Gray ❤️ and yes! I just tell people he just has a different type of lung disease now 🤷♀️
It is nice to know he is doing better.
Thank you for sharing your journey ❤️
first time i comment, but i found you a couple of days ago and binge watched. i got a heart transplant 3 months ago, and im so happy youre sharing the journey. although it is a different organ, some of the meds and restrictions are the same. hell find a huuge welcoming community over on instagram (transplant and chronic illness communities are awesome), i think hell feel very understood there (specially being so young) and hell get lots of tips and questions answered (regarding things to do post transplant, side effects, random questions…). i hope recovery goes smooth and that you remain positive and patient. sending lots of love from barcelona✨
I have found heart and lung transplants are very very similar :) How are you feeling?
Awwww, bless your son! I don't blame him, for not doing household chores! Ohh Mom, I think that you're a terrific, great Mom! Thank goodness your son Lonnie was blessed with a transplant! Thank you for sharing your info for helping others that are facing the same ordeal as Lonnie! Sorry if I spelled his name incorrectly! Love what you do Mom! 💞💙💞
I used to be on Novolog( I’m type 1 diabetic) but now I’m on Lyumjev which is another type of insulin.I’ve been type 1 diabetic since I was 3 years old( I’m 15 now). I got diagnosed with type 1 diabetes on October 19th,2011 so this October is 12 years with T1D
Our daughter had her liver transplant at just 4 months old. My amazing sister donated. When she was released they send the transplant children home with a Stanley toolbox to hold all their medications. It's crazy how much meds they are on after transplant. Now my daughter is soon 6 years old. She is on par with all other children her age. Even her twin brother. The only medication she takes now is Tacrolimus .8ml twice daily and Vitamin D. To go from having a child so sickly in the hospital. Not knowing if she would see her 1st birthday to having hopes and dreams for her future is truly amazing. Best wishes to you and your family ❤
I love this so so so much for you. Liver and lung transplants are a little different as far as the meds they stay on. Like he will always be on Prednisone, Imuran, & Tacrolimus which means he will always have to take calcium 2x a day and Vitamin D 1x a day along with Bactrim 3x a week. 0.8 mg is AMAZING though. He's on 4.5 mg 2x a day so I am hoping the further we get away from transplant, the lower that dose gets!
YOU GUYS ARE THE BEST! ❣❣GOD bless you all!! 💜💜I always pray for you all! I love being a member of your LANDing Crew!
I completely understand the side of when he wasn’t able to get even to the living room. I have been bedbound for around 12years and it’s crazy when you actually think about it. My mum has to go up and down stairs all day think she would be happy to never go up or down stairs again lol.
So pleased you are seeing the difference in Lonnie Jr since being home. Clearly a way to go but every little step forward is a huge achievement
Wow and I thought my med list was getting long. 😢 so happy Lonnie is moving around now ❤
I cry during all of your videos. Especially when you talk about his donor. As Lonnie took his first breaths of life in Colarado, my dad took his last here in Ohio. I'm living vicariously through Lonnie's success ❤❤ I'm so very happy for him and so very sorry to the donors family! We are a family whose been on both ends. We've donated and received ❤❤ Hugs and love to Lonnie Jr!!
Don't apologise for being emotional, you have all been through so much and thank goodness you are on this side of this journey.
I pray for you and Lonnie’s healing. Would it be ok if Lonnie’s dad (dad perspective on lung transplant journey)come on video to know how he is doing. I hope he is healing too.
Hugs ❤
If Lonnie juniors throat gets sore from swolling so many medications. Put the meds with jelly bigger pills hurt going down the hatch.😊
That’s a great hack! He seems to do ok now but if it starts to be an issue 👍
You can do this, it is normal to stress out, it always good to have someone to talk it out. Just know that the other person is scared too, sometimes they want to now that they are going to live thru this. Just say were going to get thru this together.
As you said, it is not a journey that you ever thought that you would be on. At some point you will all need therapy for the PTSD. Don't ignore that, it is important to do that work. So very happy for you that you are on the flat ground of the journey allowing you breathing space! Love to Lonnie Jr. ❤️
I already see a therapist that handles trauma and PTSD … for my other trauma 😅 so I 100% agree with you
God’s grace has carried you and your family!!!❤
Your son is so handsome, i will pray for him
Wow! I was on Gabapentin when I had the shingles.
Yeah I take it now for psoriatic arthritis. It's a very helpful drug!
I am on gabapentin for nerve pains
With Lonnie Jr's health issues does he have to watch his sodium intake? Pot Pies and Ramen are extremely high in sodium as is Chinese Food. My husband has some health issues and his doctors advised us to limit sodium as much as possible as it makes you retain lots of fluids. It can be hard on the heart.
So happy your son is at home and doing so great. And I'm really happy that you can finally relax knowing that your son is going to be ok. What a great feeling for you. And how exciting to be home and be able to sleep in your own bed and actually relax. 🙏👍🙏👍🙏🙏👍🙏👍🙏👍🙏👍
He will after he gets to his target weight his team has set. He lost ALOT of weight during surgery and after so his team just wants him to gain weight in anyway he possibly can then worry about sodium intake later. His stomach not being able to tolerate a lot of foods made things even more trickier!
My dad got kidney transplant almost two years now and he takes tacrolimus and yes it does variete as the body is getting used to the transplant and is now maintaining it so the body won't reject it and that's fore life . He also yo the batric? Something like that and that's not for life for him he only takes for life is tracolimus and one called mycophenlate. At first it's hard to remember every medicine and what's it for blah blah blah but props to you steph cause it ain't easy with your life going on. glad yall are kinda back to normal
My daughter got cmv 2 months ago and we were so scared with her new kidney and a month after that she got crytococus meningitis and was in the hospital for over a month so please be careful with who comes around so soon I know you know that but my daughter will not go anywhere without a mask we continue to pray for all of you
We are going to both write a letter to my daughter's donar
My record is 22 pills in a single swallow. Eventually you learn to close off your breathing for a moment to swallow with your throat almost full of meds & water. It impresses nurses & it’s always a good idea to get them liking you ASAP 😬
Praise the lord. God bless him
I’m 26 and have been taking 50 to 60 pills a day for various conditions, as well as regular injections for autoimmune issues since I was 19. I’m very fortunate that all of my treatments are free due to our healthcare system here, but I sympathise greatly with your son. I’ve taken or am currently taking several meds you mentioned, so I know how those meds can make you feel and how frustrating it can be at times. It can be very isolating at times when your peers are healthy without any medication, because it’s very difficult for them to understand that you may not be able to do things that they take for granted because of your conditions and side effects from meds. I wish him the best of luck and good health!
Please make sure that they are monitoring his liver. I am so glad that he is doing so much better.
They do an x-ray, PFT, and blood labs at every clinic visit so he will be closely monitored although the liver isn't usually the organ that gives them problems, it's typically the kidneys.
Liver is important to under monitored for these meds are toxic to liver. From a GPA patient myself.
Im surprised Bactrim is still on the market, as I was told it wasn't in SA anymore....I had such an awful reaction...glad it works for him. You are allowed to have these waves of emotion.... Youve been through SO much.... Must be so good to just be home , even though it's still hectic..... Always thinking of you all ❤🇿🇦❤️
Yeah he’s been on it for 7 months with no issues but he only takes it 3days a week too so that might make a difference
@@OurLANDingCrew8 fantastic Steph, you're a champ, as seeing those meds would do my head in 🥰. I have Klippel feil syndrome, so take meds daily, not anywhere near what Lonnie and you have gone through. Side note, I admire you being at his side in the hospital 24/7, as a child from 3 years of age, I have had 35 surgeries, not once was my mother at my side, so HUGE admiration for you, and would do the same for my mine 🙏✨🥰❤️
I'm on Remeron too
I'm rooting for your family. 😊 when my lungs give out im not going for a transplant. Im too old. They will probably just take out portions like my sister. 😌
We would’ve opted for lung surgery if the damage would’ve been more localized!
Hello,I also had a double lung transplant may 11,21 was mine ❤
I take Tacrolimus it switch so much it’s crazy
I take 25 ish tablets per day mine is for pain but what I do is I have my phone set for times when I need to take medication. One I have to take 12 hours apart.
Now I’m
Not comparing mine to Lonnies issues at all just highlighting an idea to help timing
Magnesium OXIDE really hits the bowels hard FYI. It's not very bioactive/bioavailable either. If he has loose bowels or bowel urgency...or just for much better Magnesium absorption, consider Magnesium Glycinate. I prefer Pure Encapsulations brand b/c clean, avoids lots of fillers. And capsule is easy to swallow.
His team specifically said oxide but I’m sure if his magnesium doesn’t increase then they’ll switch him!
I'm on Gabapentin for my seizures
I hope your okay, I wish you the best x
I am on it for sciatic nerve pain. It is the only med that has worked for it!
I’m on lamotrigine for my seizures
@@Carolineisthebest Me too.
My boyfriends twin brother is on Karpra( I probably butchered the name of that med) for seizures. He has to take it every 12 hours on the dot or he will get a seizure shortly after he misses his dose. Like minutes later
Lex is too funny.
Tramadol is actually a non narcotic pain med
It says it’s a narcotic (opioid) but I get what you’re saying because he couldn’t take oxy without having an adverse reaction
@OurLANDingCrew8 I miss spoke it is what they call a "synthetic narcotic" so technically still in the narc/opioid category but different. So glad it doesn't effect him like most narcotics do!
What was that he put the pills on? Jelly?
Nicely detailed video. I hope he'll successfully be able to get off most of the medication. It's interesting how it's not just one anti rejection medicine.
Same. I thought he'd just be on one but apparently for lung transplants, you need multiple ones to reduce the chance of rejection.
Has this brought your family closer with this experience?
Honestly our family was already very close before this happened but it definitely gave us all a different perspective and made us appreciate life a lot more.
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Watch Lonnie Jr's memory very close. Gabapentin stole soo much of my memory both long term and short term. Even after being off of it for years, there's been no improvement. I was told there should be. Tizanidine has a nerve pain component to it, I use that now.
Magnesium oxide is least absorbable Magnesium. Magnesium glycinate is best.
So glad he's home!! I take soo many pills a day and it won't lighten up for the foreseeable future. I am getting to where it's more supplements then prescriptions finally.
His team specifically wanted Magnesium Oxide for absorption so I’m sure there’s a reason behind that. That’s horrible about Gabapentin, I didn’t have that experience but I am hoping he won’t have to be on it for long!
I take 18 different medications and around 40 pills daily a couple are 3 and 4 times a day
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Tramadol was something I was put on at around 16 years old and I swear to God, that medication made my ability to focus on homework, just off the charts good 😂 I used to joke that it should be a ADD medicine 😂 it didn't help with my pain enough but it took the edge off. Unfortunately it lowers your seizure threshold and I randomly began having grand mal seizures. Some people are absolutely fine on it and will never have a seizure but it can cause seizures. I debated commenting this because you have enough to worry about and I'm not trying to scare you but I also figured I'd let you know just in case, then at least you'd know why it happened. It wasn't until my 4th seizure that the doctors connected the dots. Interestingly enough the medicine they put me on to prevent seizures was neurontin, which is gabapentin 😂 it's no longer used as a seizure medicine I don't think because back when I was put on it for seizures as a teenager in 2005-06, I was told that it wasn't really used for seizures anymore even back then but my doctor was down to try to see if we could help my pain and my seizures at the same time 😂
What if he's allergic to any or all of these meds I'm allergic to quite a few of them but thank God we'll never have to have a long transplant or any sort of transplant too many allergies
They would change his meds then but honestly he's been on them for almost 5 weeks so we would know if he was allergic by now LOL. But yeah, they'd just change the med you need so like he had adverse reactions to a lot of opiates so they just kept trying different meds until we found one that worked well for him!
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With Imuran I'm confused if it's an immuno comprised med isn't that what you don't want. If you are comfortable and Lonnie Jr is comfortable could you explain that.
His immune system must remain suppressed so it doesn’t reject his new lungs and so his vasculitis stays in remission. Yes, it opens him up to more infection which is why he’s on the other medications/infusions.
You have this
Y’all are going to be stunned when he’s off a lot of the other medication and equipment.
Watch the gabipenten it caused major stomach issues for me. The roids he is on can cause ave which is the bones starting to die
Thankfully he doesn't seem to have stomach issues with Gabapentin but I am not surprised since I don't either (I take it for my arthritis). It's why he's on calcium and vitamin D but they will just continue to monitor his bones and there's treatments they can do if it gets bad but these meds are definitely not without side effects.
I was taking 10 prescription, I hated it
You made it through to the other side!!!!!!!!!! Now, you have to try to relax a little bit!?
Can I ask what auto immune disease he has . My 3 month is being test for immune disease I want to see if he can be test for it
GPA Vasculitis
@@OurLANDingCrew8 thank you
First viewer.😊
I am so happy that He got a lung transplant. You and your family have been to hell and back. I hope only good things in future for you all.
I just thought so you need to check if you all have the same condition as lonnie Jr?
He has a very rare autoimmune disease that thankfully isn't hereditary BUT even if one of us have it (none of us have symptoms), it would show up negative unless we were in an active flare up.
The American healthcare system sux big time.I am Australian and believe America should follow our and England's healthcare. Instead of dishing out taxpayers money 💰 to foreign countries like lollies. I love your channel. My x had a heart transplant at 15. She's 36 now and has to take 13 different medications a day, 16 years later. You're a super mum, and now your boys home. You can spend more time with your family. Being away from your other kids at the hospital would have been also horrible. Time doesn't wait for anyone.
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