ALLERGIC REACTION & PAIN IN MY SPLEEN! 😱
20
December

By Adem Lewis / in , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , /


I have started getting hives. We don’t want that reaction going any further. Pain started and I was like, oh, that feels weird and then it was like oh, this hurts, and then it was like, I can barely breathe. ♬ Oh, you gotta breathe, breathe, breathe, breathe ♬ ♬ Let it go and let it be, be, be ♬ Happy Monday morning. It’s time to go get some blood work. I’ve been on IV antibiotics since… Friday night. Friday night. That’s the one. Well, so it’s been…today’s Monday. So… Two and a half days. Yeah. And I am wondering if I might be past the… first few days. Well, not all of the reaction. I still have some hives on my legs and my arm and my hands are a little swollen and I think my face is a little swollen and I still had a fever yesterday. But I feel a little more human. I think the worst of it was probably Saturday night. Uh, like 24 hours in, which is typical. Yep. So we might be past the worst of it. We’re gonna go… One of the important labs that we’re going to draw today, it’s the vancomycin trough. So it’s right before my next dose and they will see how much of the medication is still in my system to say if I’m on a therapeutic dose or not. Now if I remember correctly, did it take two weeks to get me on a therapeutic dose last time? It was either, I think it was two full weeks. Because my body will absorb it differently and there’s kind of a stack up method, er, like… Uh, theory, like… after a little while. Okay. My dose is a little bit on the low side. But after a few more days on the same dose it might stack up. Anyway, it took a long time to get me on a therapeutic dose last time, so we’ll see. I think they call it build up. Build up. Not stack up. That’s the one. But that works too. It’s like little Pez in a Pez machine. Stack up. But uh, yeah, so that’s our day. It’s so sunny and really quite beautiful. Yeah. Quite unnecessary to wear a sweatshirt in July, but… Whatever. [Peter] Headed in. I feel like a spectacle. [Peter] You are. Y’all, he’s got the camera shooting at me. [Peter] You know you’re a frequent visitor of the vampires when you notice they have different vacutainers. [Peter] Well done. Very astute of you. Okay, I just got up from resting for quite a while. We got back from bloodwork and I’ve just been on the phone with… pre-op nurses and my doctor, my CF doctor. Um, emails going back and forth about my admission… coming up and um, basically… a couple of changes. Um, I am currently on zosyn, aztreonam, and vancomycin IVs, but I have started getting hives. Patches of hives. I don’t know if you can see that but there’s like a patch. I don’t think you can really see it here, but on the, on my legs, on my thighs… [coughing] Just patches of hives and they started itching now, and um… And so my doctor said we don’t want that reaction going any further. And so he stopped the zosyn. And… So this is just aztreonam. So now for today I’m just on… aztreonam and vancomycin. And we will figure out a third IV to start. I’m guessing he’ll let me know when we come up with something that’s an option and um… That’s the plan for now. Hey guys, we actually made it out to uh… take a little boat ride at sunset tonight, which was a lot of fun. But today I want to tell you… our friend Sarah helped us pack up a bunch of the orders of our new merch, like… this floral Frey Life hat. And I choose joy water bottles. But before we went out tonight, I don’t know. I don’t know what we’ve updated. Did you tell them about your… [Mary] I told them about the reaction. Reaction, but then your spleen. I know. The spleen situation of 2019. Yeah. So Mary… I like, I was out at the grocery store and I come back and Mary’s like, my spleen feels really weird. If you guys haven’t heard us tell this story, about nine years ago I had two… It was unknown at the time. We know what it is now, but it was basically like a pain crisis, where… like, the pain started and I was like, oh, that feels weird and then it was like, oh, this hurts and then it was like I can barely breathe, and it turns out that I had a splenic infarction. So my spleen had… It’s like a stroke in the spleen. Like, blood vessels die or something? So there’s lack of blood flow, which means a portion of the spleen dies. So anyway, that happened twice. Well, it hasn’t happened in nine years and… tonight, or today I was like… that kind of feels weird. Like, oh, what is that? And sometimes that happens where I’ll get a lung pain that like, when I sit up it kind of hurts more. But usually when I breathe in really deep, it hurts really bad and something pops in my lung and then it doesn’t hurt anymore. Well, I thought that’s what it was, but it’s like right by my spleen. So now, so then through part of the day… in the evening… uh, it was like very, it was hurting like, you know, most positions. So I laid down for a while. But then now it’s just if I sit up… straight. but anyway, um… It’s…it is what it is. It’s tolerable. Yeah, it’s totally tolerable now. Um. It was really weird. As long as I don’t breathe in real deep. I was kind of concerned when she first told me about it. I was like, I’m fine. But if I need to go to the ER, this is why, like… Here’s what’s going on. So, thankful we didn’t have any crisis moments tonight and no anaphylactic reactions. I have a feeling when I wake up tomorrow it’ll be all gone. Yeah. I have a feeling. Hopefully. [coughing] I don’t think the hives will be gone tomorrow. Okay. I don’t know, like the patch under my leg… Is it worse? It’s been itchy. It’s okay. It’s… Just gotta keep an eye on it because we don’t know if it was the zosyn or the… aztreonam, which she’s still doing, so… Also, did you tell them about my blood counts? No. We got Mary’s blood results back. We were really curious to see them just if something was really weird in relation to the spleen pain she’s been having. Sorry that bagel got so toasty. It’s good. Okay, so Mary’s blood results came back and they’re kind of weird. They just dropped a lot faster than we anticipated because… The last time I was on these drugs… She’s on them for four weeks, right? I was on the first set for two weeks and this set for three weeks. And my blood count stayed in a safe range. I’m okay like, for today. Yeah, but it’s concerning after three days that they dropped so much. I’m really curious what my team’s gonna say tomorrow because one, they’re gonna want to put me on a third antibiotic… for whatever zosyn… What, is zosyn for Pseudomonas or MRSA? I think it’s Pseudomonas, but it might be some of those treat both, but… And then… So what they’ll want to switch me to. Also, I haven’t heard yet if I’m gonna be getting a platelet transfusion for my surgery. Which, the platelets dropped. So it’ll probably be dependent upon day of where her platelets are at. But… But there’s just a lot of things up in the air, but we’re just truckin’ on and… Yeah. Today was… Surgery’s scheduled for Friday. Today was the first day where I think my… I don’t think I had a fever and I didn’t have a headache. So I’m just way thankful. Yeah. [both] As always, we will see you tomorrow. Good night [Peter] And good night to the Ollie boy. ♬♬


100 thoughts on “ALLERGIC REACTION & PAIN IN MY SPLEEN! 😱

  1. Thank you guys so much for cheering us on. We feel honored to have friends around the world who are coming on this crazy journey with us 💜

  2. Ty for the update. Mary you do look better today. Try benadryl spray to the itchy areas. It is awesome. My love, thoughts & prayers are with you both. Good luck with your surgery on Friday.

  3. Keep up the good work! 💪🏼 You are not fighting alone! So many of us, your loyal friends/viewers, are praying and cheering for you. 🤟🏻🙏🏻👏🏻👏🏻👏🏻👏🏻👏🏻

  4. I will thinking of you Mary and saying a huge prayer all goes ok on Friday…and to Peter to…Sending lots of thoughts and love always from New York💕

  5. Peter and Mary,
    HI GUYS! I wanted to let you know that my T-shirts are now available. I might be a bit biased since I designed them, but they are pretty darn cute. Please let me know if you guys would like a couple of shirts and I will send you an order form.

    There’s a picture on my Instagram speakeronwheels of them. Thanks so much and I look forward to hearing from you.

    My regards,

    Katie W.

    ROLL-ON PRODUCTIONS

  6. I get redmans with Vanc, when we did my first dose my body was burning hot, bright red and itching and it took doses of IV Benadryl to make it go away a little bit.

  7. Praying for you Mary that the reactions You're having don't get worse cheering for You glad You have a good care team

  8. Hey Mary and Peter! I love watching your daily vlogs. I pray for you everyday without fail. Wish I could purchase some of your merch. Lots of love from India ❤️

  9. Hope things keep going ok for you. Watching Amy’s Life and she was sporting an Ollie sweatshirt “Jumper” so cute! Your team is an amazing team they stay on top of things and keep you home as much as possible which is so cool.

  10. Peter and Mary, you are such a wonderful example of the grace of God. We pray that all will go well with your IVs and the sinus surgery.

  11. I had severe anaphylaxis to vancomycin, I had vancomycin Intravenously via my Hickman line a few years ago and within seconds my throat just closed up on me and I couldn’t breathe. Luckily I was in hospital as I had Sepsis at the time, and so many doctors cane running in to help me and I ended up in ITU as the anaphylaxis reaction I had basically had a severe reaction on my respiratory system and so I was ventilated and placed in an induced coma. It was so scary but I’m so thankful I was in the hospital when I had the anaphylaxis reaction. Just keep a close watch on your symptoms please Mary and I’m so happy you have Peter by your side, as vancomycin has so many side effects and I just don’t want you to endure any anaphylaxis reaction. God will continue to bless you and your family and continue to protect you and help you through this journey Mary.

  12. I commented on your last video about maybe having an allergic reaction. Your BEHAVIOUR warranted my response. You can always become allergic even if you used it your whole life. Prayers continue.

  13. Mary I'm sorry you are having such a hard time with your medicines. I have a different sort of chronic problem. And this year I found out a infection I had milder form years ago probably never went away. Several times this year I have been on IV antibiotics including the last 6 weeks at home kind. I did take vancomycin and I believe cepfine ( I think is how it's spelled.) Anyway I think this stuff has worked (I hope). I hope they find what works best for you and it will work. I don't know if you have done this but they do have a DNA type test to see what drugs/medicine you are sensitive or how you might react with. Also Peter and Mary thank you for sharing your faith with everyone and for allowing us to a small part of your lives. HUGS

  14. I pray for you both everyday. I look forward to seeing a part of your world. I’m a copd sufferer and I know how hard it is to catch your breath and the coughing first thing in the morning is scary at times. I love you kids.

  15. You two are amazing. Mary knows exactly where her spleen is?! Does she ever get anxious about pains? And Peter sounds like he could jump in at a CF clinic and help the doctors with all his knowledge. I'm in awe.

  16. U guys sounds like doctors. Y’all know Mary’s body very well and know what to look for. Love to u guys…

  17. i was on vancomysin back in april for MRSA of the bladder and i didn,t have any bad affects from it,so i don,t think you,re having hives from it. Common side effects of Zosyn include:

    injection site reactions like. swelling, redness, pain, soreness or. irritation;

    agitation,

    trouble sleeping (insomnia),

    vomiting,

    stomach pain or upset,

    diarrhea,

    constipation,

    runny nose,anxiety,

    skin rash or

    itching,

  18. I can understand allergic reactions to antibiotics and also anaphylactic shock also. Been there many of times. Can't imagine all of this with CF. Prayers

  19. man, you are really going through it, Mary. i admire your fortitude, sweetie. the LORD will pull you through. lifting you guys in prayer.

    long time ago i had a boss who used to get hives real bad. she would have these huge areas of swelling all over her body. she'd have to miss work due to them, they were so severe. sometimes her eyes would swell shut. i don't think they ever did figure out what was causing them.

  20. I'm so glad to hear that your feeling better, yet the hives are concerning me some🤔. I am going to continue to pray🙏 that God will work it all out. Your in his hands and in our hearts through this time of healing. 🤞

  21. Mary, my darling, you more than deserve to catch a break! The four of us send the three of you our love xxxxxxxxxxxx

  22. Hey guys! My name is Bridget. I am praying for you all daily. Thank you for sharing your journey with us. God is so much bigger than any health issue 💜

  23. Sweet Mary and caring peter, you handle all of this with such grace. Seeing you do your best to find the joy and the silly moments in each day is very heartening. ❤️ We’re all cheering you on!

  24. I will keep praying that everything is good. I get chest pains sometimes. And something pops under my ribcage. I had open heart surgery when I was 11 years old all this has happened ever since the surgery. SO I have had so many heart doctors tell me that these kind of pains are completely normal for what I've been through. People in their 70's complain of these type of pains. So I learned real fast to stop going to the ER! OMG they put me on oxygen and all kinds of machines. Ekg. Run tests. Make me think I'm going to die. So I don't go anymore. It's normal. Scares me a little but no big deal. Scares other people allot. So I don't tell people. Lol I made a mistake of mentioning a couple weeks ago to a friend that I was having chest pains again. But they will go away. But her Aunt was there and we just had a family member die of a heart attack just recently. Funeral was 2 months ago. So ya that really concerned the Aunt big time. We explained.

  25. Praying for you! Did you see on the YouTube channel called Amy's life, that she went into surgery and on a Frey life sweatshirt with Ollie boy on it….how cool is that!!!

  26. Mary Praying for you to feel better,no more reactions , and your up coming sinus surgery. You and Peter make a great Team. May God continue to Bless you and give you strength on this Journey of life!

  27. Mary, I have a lung disease (not CF) and I use a steroid cream when the hives really drive me to tears. Unfortunately, steroid cream can cause thinning of the skin so I remove it as soon as the itching stops. It is something I always keep with my meds now and thankfully, I need it less.

  28. Just got my "I Choose Joy" water bottle, key chain and Ollie magnet (which is already on my fridge). Love them all and am going to order more as gifts. Thank you and as usual, prayers are with you.

  29. Hey, fun fact: that thing you're discribing happening to your lungs (with the pain that goes away after a pop) is called a "prechordial catch syndrome", it is not serious and it happens to a lot of people. I thought i would let you know the name so you can reasearch about it if you're curious.

  30. Hi guys. Spleen are awful. I have an aneurysm in my spleen and an enlarged spleen due to my non-alcoholic cirrhosis. My spleen can be really painful and it’s horrible. It can also contribute to the nausea I get. So horrible. I hope you find relief soon. ❤️💐

  31. Which surgery is it coming up on Friday. Sorry was trying to cook and deal with a fireworks situation and I missed it xD

  32. Look up the channels called RichieFromBoston or RFB II
    Look of the videos of 5G waves or Vaccines and then you can also watch the videos from the past few weeks

  33. Does anyone know why they can't remove her spleen? I'm sure theres a ton of reasons. Feel better Mary!

  34. Peter you should do a video on you video editing cause I'm so interested how it's done. Do you guys wear a mic? Your audio is so clear

  35. Hey Mary and Peter you guys are such an inspiration much love! God will help guide you through this Prayers are so powerful and I am praying for you guys

  36. Hang in there Mary!! We are most definitely cheering you on here!! Fingers crossed for no more reactions-I can’t remember you saying you have had hives before, especially on an antibiotic you have been on before-our bodies can be really crazy sometimes!! Sending continued love hugs and prayers your way!! 🤟🏼❤️🙏

  37. Mary saw that you were in the hospital on Instagram. Hope your blood counts behave better now. And that the antibiotics they choose to switch you too doesn’t give you worse side effects! Always in my prayers, love to you and Peter and of course sweet Ollie boy!

  38. May I ask how you got started with IV antibiotics, what warranted it to the doctors, because I have a bad reaction to every antibiotic, I try, but I can't seem to get the doctors to understand and they keep making me suffer through them with horrible stomach pain? THank you, Love you guys!

  39. I really feel inspired by you and love you and Peter unity never had that with any husband and was chronically ill now im under Dr's care not knowing.what i have wrong I will pray for you and please do for me .

  40. Sending both of you warm wishes from Scotland. I so admire your courage and how you both just get on with it, and maintain a quality of life in your love for one another.

  41. I am curious, does your CF Team recommend that you stay out of the direct sun when you are on your meds? I know that since I am on high blood pressure meds, I am to avoid the direct sun. Do you think that contributes to your hives?

  42. I love the yr new intro, sorry to hear yr on antibiotics again. Happy 4th July to you both,I wish you luck on yr admision to hospital.

  43. When i watched your last video and you said you had gotten out of the bath tub and vomited all over everything, and you had a rash. I was thinking to my self sounds like your having ab allergic reaction. And now i see this video that you did indeed have one. I hate that your going through this. But you always have a smile and have such a great out look in life. I love you guys and oliver, your such amazing people! Get better soon.

  44. Hope this short video will encourage you and Peter and other couples too!
    https://youtu.be/O1CvKzAIsDM

  45. I’m so sorry Mary. I hope your spleen is okay and it isn’t another infarction. I’m glad they stopped what could be causing the hives. Zosyn is for Staph and Pseudomonas. Bless you and as always you’re in my prayers!💛🙏💛

  46. I'm sorry if I missed something but I'm a little confused as to what surgery is on Friday? I assumed the next steps would be done in NC after you move. You inspire me everyday and your attitude in the face of adversity is so encouraging to me. I pray for encouragement, wisdom and peace in the midst of it all.

  47. Best of luck, and prayers being sent your way! I can't remember which video it was, but I noticed your facial swelling prior to the antibiotics.(maybe the Starting IV Antibiotics/Plans for Surgery vid?). Your right side > than your left in the vid. If I'm correct, the swelling started prior to your IV abx. I have had to stop my treatments, due to reactions….sort of hit the bottom of the barrel for me I'm afraid (re: medical treatments). I started alternative treatments in January, and I'm holding my own at the moment, so I am thankful. All the best being sent your way. I know it's not easy to go through, but you will….with His guidance. <3

  48. Mary you gave me sympathy itch! As soon as you started talking about your hives I started itching! I know you got admitted after this video but I hope it all settles down soon

  49. Hi my name is Katie I also have cystic fibrosis and when I woke up today to do chest PT there was an earthquake in my hometown I'm not exactly an earthquake aftershocks from the neighboring town over and me a coughing up a storm during an earthquake that's one way to start the day. Watching your videos always brings a smile to my face because I know I'm not alone in the CF world

  50. Taking a deep breath, feeling a pop, and suddenly the lung pain is gone… I’m honestly so relieved to hear someone else say they experience that!

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