Risks vs benefits. Pros and cons. It’s that balance we ALL walk in so many areas of life. There are so many people dealing with the hurricane right now- it’s so weird to have a blue sky outside when I know so many others are dealing with a hurricane! Praying for safety and endurance for all!
And let's all think of the people in Massachusetts dealing with injuries, fires, and having to evacuate their homes after those weird gas line problems.
Mary please read this. 150mg vials, reconstituted with 2mL sterile water means that in a single 1.07mL dose you got 80.25mg of Colistin. Given 3 times a day that's 240.75 mg total per day. *The maximum dose of Colistin that can be given to a person without renal impairment is 5mg/kg/day.* Your dose was the maximum dose that can be given to a person who weights 105.96 pounds. If you weight less than that, it means that they gave you a dose that's above the maximum dose that can be given to you. Colistin is a very toxic antibiotic. That they started you at or possibly even beyond the maximum dose is crazy enough in itself. But that they sent you home without professional supervision to start it, without monitoring your side effects and only asked for bloodwork after 2 days is unforgivably reckless. If your kidneys had a history of having trouble clearing out antibiotics and they knew about it, then I lack the words to describe the craziness of it all. It would border malpractice. They should have started with a lower dose and increased it gradually until side effects started showing up. That's how you find out how much your kidneys can handle without wrecking them. There is even a dosing protocol for people with renal impairment that goes down to 1.5mg/kg/day so it is still possible to use that antibiotic with renal impairment. Your kidney couldn't handle it because your doctors completely blew it for you. They completely blew it for you. They have no idea what they're doing. Find new doctors. Please. Find an adult clinic where the doctors are used to administering last resort antibiotics like this. Your life at this point literally depends on it.
Mary your videos got me through my medical problems last year. My doctors found two large tumors on my ovaries and all of the doctors were sure I had cancer. I lost my ovaries but today a year later I am cancer free. Your videos really helped me through it! The positivity you have even with your medical issues you are an inspiration!
Taylor my gma died of ovarian cancer in 91 and all the woman in my family have had ovaries removed when possible since. You are very lucky! I know it is a very aggressive cancer. So happy you are cancer free!
Mary you are so lucky to have a man like Peter who really loves you and wants to take care of you in the best way possible. Not too many people are that lucky. God bless both of you. And I hope you get to go home soon when you’re feeling better.
Becky here. Found myself back in the hospital and on vanko. I'm uncertain of what I face on Monday besides tests, I thank you for posting this topic, if you will. I'm on my fiancees tablet and being able to keep my mind off of my situation and be inspired. Thank you! Praying for you!
5:18 I think Peter is making his "proud of myself" face because he has that welt on his forehead, haha! I hope you feel better, Peter! As Mary said, "another bruise to add to the 'menagerie'," haha!
I feel you! I'm in the hospital with my asthma at the minute and some of the medications we take can majorly damage our bodies. The steroids we take made me need both my hips replaced, but my lungs needed them! It's tricky trying to work out what's right! Hope you're doing better Mary xxx
Moving closer to the hospital is honestly something you might want to consider! It would make hospital stays and anything and everything medical related so much easier!
Watching your videos has really changed my life. Because of you I'm talking better care of my health (instead of trying to avoid facing the truth) and I'm finally accomplishing things I've wanted and needed to do for a long time. I hear Mary in my mind telling me to do what I think I can't do and I'm finding ways to get the yucky stuff done 👍 I just wanted to let you guys know what an inspiration you are. Thanks for being you and for sharing your life with all of us. I'm sure by now you know, but in case you are ever in doubt-you make a difference! Sending you healthy, positive vibes and prayers😊
I just had a feeding tube placed a month ago now, but they thought I needed an antibiotic for a slight infection. I cant take anything for staph so they gave me something that had a mild side effect. After 2 doses I had way more side effects than I did before and had to discontinue it. I see you push through so much more than I think I ever would. Mary you're such an inspiration.
"And I've never been to Boston in the Fall, we are the Pirates who don't do anything"....veggie tails, Anyone else think about this song while Peter was outside? 😁 Keep Fighting Mary!
I'm glad things have settled down some for you. I hated seeing you look discouraged earlier in the week. Thank you for sharing the reality of the ups and downs that come with chronic illness
You look better than you did a few days ago (don’t take that wrong) I was worried about you so much. We serve an Almighty God who is our Healer and I just gave Him all my worries about you. He is in Control all the time! Continuing to pray for you. 1 Peter 2:24 - Who his own self bare our sins in his own body on the tree, that we, being dead to sins, should live unto righteousness: by whose stripes ye were healed.
I am so glad that hook didn’t hit you in the eye Peter! I am so happy that you’re feeling better Mary! And I’ve never been to Boston before, but I imagine it is super nice there.
Hang in there sweetness!!! We are cheering for u!! Isn’t it awesome when you start to feel a little better after being really sick?? I think it feels extra special!! I’m not sure if those without chronic illness would quite understand.
I pray that you will get your appetite back even if only a small hunger. With my daughter being a chronically ill patient I understand about drawing from the port versus the given vein. She has been over 30 days without a bite of food but she was on TPNs. There are many difficulties to overcome with home IVs. It is doable. Love and prayers, Dana & Mary
I'm glad you are feeling better. I agree with Peter, you are a trooper. Peter, you are such a supportive caregiver. Your blanket matches the wall behind you. Royal purple for an amazing person! Ouch Peter. Beautiful view out the hospital window.
The two of you are amazing! I found you a few weeks ago, and are watching new and old vlogs mostly every day. You inspire me to fight harder and stay more positive. I am Swedish and live in northern Sweden, and get almost no help here. Most doctors do not know anything about my diseases and my body falls apart more and more, and I worry what will happen since one of my diseases are progressive and I keep on getting worse and worse for every year. (Ehler Danlos Syndrome ) I myself have several chronicles diseases, and every day is a fight. Some days the pain in my whole body is so awful I want to die, and I almost give up. Watching your vlogs help me! It reminds me that I need to stay strong, even when it seems impossible. It seems to be so much more help in the US than here, no matter what disease you have. I watch several vlogs of people that suffer from Ehler Danlos syndrome like me, and they get soooo much help and devices and stuff, I get nothing. I ask for finger splints to keep my knuckles from dislocating at night, and they have never heard of those existing. I know they exist in the US. It is frustrating. But anyway, I just had to write to you to tell you how much you help me and how amazing you both are! It seems like Sweden has least people suffering from CF in the world or something like that.(if I remember it correctley) At least a lot fewer people have it than other countries, did you know that? Hugs to you both!!! ❤❤ Disa from Sweden
This afternoon I had my PFT's and they draw a ABG. Both were not easy at all, and the results are bad. But thinking of you, and see you daily struggle with all this stuff made me thankful for don't have to do both so often as you do. Because it wears you out. And it makes me thankful that my health could be a lot worse than it is right now. And I'm thankful that I'm almost living next to the hospital, so no 1 hour care drive for me. So, there's a lot to be thankful for! Thank you for inspiring me and so many others. I'm praying for you both. God bless!🙏🏻 Sending love from the Netherlands!❤
Peter, when you said "Have you ever been to Boston in the fall?" all I could think of was the song from Veggie Tales "The Pirates Who Don't Do Anything"...."and I've never been to Bawston in the fawl...." lol lol lol.
I'm in the hospital often with my son and I don't even understand why there is beeping in the patients room - drives me crazy too. Should have a centralized area that deals with the beeping and alarms to let the nurses/doctors know whats happening - no need for the patient and loved one with them hear any of it in my opinion, especially throughout the night. You guys are in our hearts and prayers
Sorry Peter but I got those uncontrollable giggles when you were telling us about how you got the bump on your head. I really don think it was funny that you got hurt but it was just so funny the way you told the story. Thanks, I needed the laugh because I hadn’t laughed yet today. It sure felt good! It also reminded me of once when I was at my Mom’s house with my sister and we didn’t have any of our kids with us so it was just the three of us. I took my shower and was going down the hall to the den where my mom and sister were. I was looking down buttoning my night gown and walked right into a hollow wooden sliding door. My head hit full on first and then the rest of my body! It scared the heck out of my mom and sister because it made this huge ‘BOOM’ that reverberated for what seemed like several minutes! We laughed all night about that one!🤪😝😂
So glad to see "our" Mary back. Your smile is a million dollar smile Mary. You inspire so many people, you have no idea. I can see the spirit of the Lord in you, you just shine. I wish I could have handled my major health problems I had for three years like you do. I didn't know you then. God gives us each talents or fruits of the spirit & yours is Joy for sure. Glad to see some improvement though, do what you think you can't do!!!! Love you guys & praying all the time.
Hey Peter and Mary! I'm so happy to see you're feeling more like yourself. Hopefully this hospital visit will be a short one and you can get back out on your boat.
My grandmother has heart failure and she has to weigh the risks vs benefits about her kidneys and medication too. The benefits are sometimes greater than the risks, and it is a very fine line between the two. She is a fighter and has fought for years. Also, I think the Veggie tale reference was funny when Peter said have you ever been to Boston in the Fall
Hi Mary and Peter! Glad to see Mary is back the way she said! I was going to ask where you are and then you say "Boston".....Can I ask you guys something....? Are you guys far from your relatives? We always see you by yourselves....I mean....having somebody else to help in any possible way....pls, I do not mean to be invasive in your private life.....but if you consider it too way far, pls feel free, of course, not to answer it! Big hug to both you you!
With the port make sure they do a proper waste. Sometimes it’s missed or forgotten and that affects results. They need a good chunk of blood wasted then take the clean blood and it allows the port draws to be more accurate. Peripheral is more accurate though. Does your area not have a home care nurse that can do blood draws daily at home? We have those to prevent hospital admissions and such and help qualify of life.
Mary, you must be feeling better as you are back to your medical nerd self again, rationalizing out everything, love it. Peter you were lucky you didn't take an eye out or break your teeth on that clothes hook on the back of the bathroom door.
Hi guys, I’m so glad Mary is human again and alive with no headache.....lol. I am in the Hsp too and your vlogs are helping me through a tough Hsp admission and stay Hugs from Ohio to all of you, Mary,Peter, and cutie pie Ollie Boy 🙂
You are both amazing. You are on top of everything! That hook Peter banged his head on! The hospital shouldn't have anything hostile like that--it's hard enough! Pile something bright and fluffy on that hook. Hang a warning sign on top of it. Maybe an orange reflector, too. Have you considered ear plugs? And maybe eye masks, too. And maybe an inflatable mat for sleeping? You have been an encouragement to me. Thanks for your sweet posts.
I started a new IBS C medication called linzess and been dealing with thankfully minor atm side effects like slight cramps and bloating. I have been noticing a difference in my bms tho today so happy!!!!!
Just a hint... always be aware with bathroom locations while on linzess. My mom was on that and she pooped her pants in the grocery store. It hit her QUICK and there was nothing she could do 😕😖
As I recall, Mary has a single lumen port and there generally isn't any reason not to draw labs from her port. If an IV is already attached then it needs to be disconnected and then one needs to wait for 2 minutes, flush and pull back 5ml of waste. Then the labs can be drawn - a similar procedure would be used if she had a PICC line. However, some doctors don't want some patients to use their ports for labs because they want them to be usable exclusively for Chemo etc.; this probably isn't the case for Mary. From what I've seen Peter is very competent in using/accessing her port and could easily learn the proper procedure to draw her labs even when she is at home- then he could deliver the tubes to their local lab- this would certainly help avoid all of the venous draws and bruises.
If blood draws from your port are giving fuzzy numbers, they need to withdraw more blood prior to the blood they want to test, this blood should be put back into your port line. So withdraw 15 cc blood. Change syringe and withdraw blood needed for labs, return 15cc blood into port line. Done in oncology where I worked all the time..
I 100% understand this. The medication I take for my gastroparesis can cause an irreversible disorder called tardive dyskinesia, which is basically uncontrollable muscle spasms. So far I’ve been lucky to avoid it, but it’s always a concern in the back of my mind.
Praying that you guys can get some better sleep tonight! I know it is so rough in the hospital and I don't blame you for wanting to do the IVs at home!
Hope Mary's bloods improve and also her kidneys. You are a really good devoted husband Peter staying with Mary in the hospita. Continually praying for you
Brain Surgery after Brain Surgery to treat Hydrocephalus, but that is my reality. I’m great full to be beating the odds even day because the day I was born my parents were told I would never walk or talk. But I can walk and talk. What is even better is I am able to attend normal college course.
Hi, Mary. I’ve been praying for you. I check on you daily but am not a big commenter. Having 2 of my kiddos with a rare autoimmune disease, I know all about hospital stays and blood draws. My son has been in before and had to have his IV restarted so many times. They have put them everywhere you can imagine. It definitely brought this mama to tears. When he was younger they even had to take blood from the top of his foot.😭. On a side note am I the only one that noticed Mary was watching GMM? 🤣
BelieveInMiracles - it can be very difficult to keep IV “healthy” in young kids because they move around so much! If the kids are babies, then the best place to put an IV is the scalp...but that is harder for Mom’s to see...butt so much more easier to put in and leave in and left painful!
It IS good you are in hospital. Lab results quicker and doctors available. You did the right thing. Remember 50 yrs ago people with CF just died. We have come a long way and maybe a cure in our lifetime!
Still sending lots of love and prayers for you guys!🙏🏻🙏🏻🙏🏻 I saw Rhett and Link on Mary’s computer...lol! I love them! Thank you for sharing your journey with us! God bless and lots of prayers and hugs headed your way!
You're looking better and better everyday Mary! Makes my day! and you sound much better too, so not out of breath as before, yay!! I wonder if the chest PT helps as the antibiotics do their thing, Ive often noticed that. Helps get rid of that nasty bacteria! Its too bad you couldnt have a nurse come by your house and do that on a daily basis. And Peter, I must say, you look mighty handsome today in your plaid shirt, BTW you're handsome always. :-) Sending my love and hugs to the 3 of you, see you tomorrow!
Omg! My two year old son who isn’t talking to much ( 3 in April) just sang the into to your video! Shows I watch you guys a lot I guess lol omg wish I got that on video!
I am a cancer patient so I know things are different but can they take your port out and give you a tunnel picc line in your chest? That's what I have and every nurse talks about how much better they are!! They are safer and can be used for IVs and blood draws!! Also I use to do the Neupogen shots but recently was changed to the Neulasta On-pro patch! Your attitude is amazing, keep it up!! God is watching over both of us!! ❤❤
Also if she had a PICC and was getting antibiotics through it they wouldn’t be able to use it for blood work because the line could contain traces of the drugs and mess up the numbers.
Oh okay. I've had mine for 3 months so far with possibly 3 more months to go. My doctors decided it was safer for me to do this than a port. They said picc lines in the arms get easily infected so they did it in my chest. I must have missed the MRSA part, I didn't realize she had that! I was just trying to throw out a suggestion. 😁😁
I'm dealing with a problem with my heart failure meds. Because I've dropped so much weight because I have changed my lifestyle and am in eating disorder treatment for binge eating. So, yea, my BP keeps dropping low enough to make me faint. So, anyways I know about tweaking meds for a life threatening condition. My prayers are with both of you.
Mary, you look and sound so much better then this past week! So so happy! I would LOVE to go to Boston in the fall one day. I’m sure it’s gorgeous :) Enjoy the weekend you guys, and keep up the positive actions and attitudes, it sure makes for better days. xo love ya all
Mary Reynolds eh, Boston in the fall is....Boston a little less humid and hot. It’s still just a city. And there are so many things to do...in the summer! But when it gets colder, no thanks. But the rest of Massachusetts in the fall is gorgeous! Apple picking, jumping in leaves, and taking long drives. Definitely worth a visit!
I would like to ask why Mary doesn’t do chest PT at home anymore. In all your admissions it seems to be a compulsory part of the hospital CF regimen, in addition to the vest you do twice every day, so they obviously don’t consider the vest to be a replacement for the PT. It seems the PT is a complementary mode of treatment as necessary as the vest. If you maintained the percussive chest PT at home, as well as the vest, maybe the secretions wouldn’t be able to build up in your chest as much as they do, reducing the severity and frequency of the infection cycles. Neither of you have to leave your home for work (except for Peter’s Sunday morning church services), so could it be fit into your routine at least a few days a week? I realize it’s Peter who would have to do it for you, but if it helped prevent or at least decrease the frequency of infections, there would be that many more weeks of him not mixing and giving IV meds night and day, or living out of a suitcase in hospital. Not a bad trade maybe? I’m not saying it’s “the” answer, but perhaps a valuable tool in your arsenal against the disease. I believe you made a video or two about chest PT in the past, so it was something that you did regularly before. Just wondering why you don’t do it except in hospital. I love your videos and respect both of you. You are excellent ambassadors for CF, as well as for a beautiful marriage.
Hey peter and Mary! It was great meeting you Peter and Oliver. A little bit about me is I am 13 and I have spina bifida. I love watching your videos. 💖💖
Peter, you are one of the busiest men I've ever seen! Mary, you're right about meds and the risk vs benefits. Every medication I'm on has side effects to my kidneys and liver, or my digestive tract. But I have to be weaned very slowly off every one of them, should that time come, because those side effects are far worse!
Mary, you and Peter talk about kidney function, and I just wanted to clarify, you were talking about creatinine going up, right? I have kidney disease, and my creatinine recently went from 1.61 to 1.8, but my filtration rate actually improved, from 19 % to 29%...
Yes....the infernal beeping and no sleeping. Esp. if hospital policy allows for night time visitors and you're in a double occupancy room. Perks of port......yep. No perks if they have to use other veins... Etc. I get it ...and yes, one must take everything w a grain of salt and a good sense of humor....which you all seem to be in good humor today! Hugs your way guys.....
I went to open my car door the other day and somehow managed to whack myself in the forehead when I did it? I don’t even know...But I now have a mark on my forehead as well! Praying for you guys! 💜
I did find it, thank you so much for your help Natalie Heidgerken. Sadly that Etsy shop is closed due to health issues. ;0( I am so sad for the owner. I will try to find fabric at Walmart and see if I can make my own.
Risks vs benefits. Pros and cons. It’s that balance we ALL walk in so many areas of life. There are so many people dealing with the hurricane right now- it’s so weird to have a blue sky outside when I know so many others are dealing with a hurricane! Praying for safety and endurance for all!
And let's all think of the people in Massachusetts dealing with injuries, fires, and having to evacuate their homes after those weird gas line problems.
Mary, thank you very much for thinking of us in harm's way with Hurricane Florence, I'm in SC. :-(
Peter, you are doing a fantastic job of keeping everything together during such a stressful time. Mary, I hope this round of meds helps more!
@@Jane_Snow_ I'm im NC. Stay safe!!!
Mary please read this.
150mg vials, reconstituted with 2mL sterile water means that in a single 1.07mL dose you got 80.25mg of Colistin. Given 3 times a day that's 240.75 mg total per day.
*The maximum dose of Colistin that can be given to a person without renal impairment is 5mg/kg/day.*
Your dose was the maximum dose that can be given to a person who weights 105.96 pounds. If you weight less than that, it means that they gave you a dose that's above the maximum dose that can be given to you.
Colistin is a very toxic antibiotic. That they started you at or possibly even beyond the maximum dose is crazy enough in itself. But that they sent you home without professional supervision to start it, without monitoring your side effects and only asked for bloodwork after 2 days is unforgivably reckless. If your kidneys had a history of having trouble clearing out antibiotics and they knew about it, then I lack the words to describe the craziness of it all. It would border malpractice.
They should have started with a lower dose and increased it gradually until side effects started showing up. That's how you find out how much your kidneys can handle without wrecking them. There is even a dosing protocol for people with renal impairment that goes down to 1.5mg/kg/day so it is still possible to use that antibiotic with renal impairment.
Your kidney couldn't handle it because your doctors completely blew it for you. They completely blew it for you. They have no idea what they're doing.
Find new doctors. Please. Find an adult clinic where the doctors are used to administering last resort antibiotics like this. Your life at this point literally depends on it.
Mary your videos got me through my medical problems last year. My doctors found two large tumors on my ovaries and all of the doctors were sure I had cancer. I lost my ovaries but today a year later I am cancer free. Your videos really helped me through it! The positivity you have even with your medical issues you are an inspiration!
Glad to hear you're now cancer free and I agree mary's positive attitude really rubs off:)
Taylor my gma died of ovarian cancer in 91 and all the woman in my family have had ovaries removed when possible since. You are very lucky! I know it is a very aggressive cancer. So happy you are cancer free!
Mary you are so lucky to have a man like Peter who really loves you and wants to take care of you in the best way possible. Not too many people are that lucky. God bless both of you. And I hope you get to go home soon when you’re feeling better.
I’m so glad to see your “better” face. Welcome back. Makes me happy 🌸💜🌸💜
Becky here. Found myself back in the hospital and on vanko. I'm uncertain of what I face on Monday besides tests, I thank you for posting this topic, if you will. I'm on my fiancees tablet and being able to keep my mind off of my situation and be inspired. Thank you! Praying for you!
5:18 I think Peter is making his "proud of myself" face because he has that welt on his forehead, haha! I hope you feel better, Peter! As Mary said, "another bruise to add to the 'menagerie'," haha!
Having a great view in the hospital helps a lot! Always praying for you guys! I hope everything evens out for you Mary!!!
I feel you! I'm in the hospital with my asthma at the minute and some of the medications we take can majorly damage our bodies. The steroids we take made me need both my hips replaced, but my lungs needed them! It's tricky trying to work out what's right! Hope you're doing better Mary xxx
5:18 Oh my Gosh, Peter looks SO smug and proud of himself!! I wonder what he accomplished??
Moving closer to the hospital is honestly something you might want to consider! It would make hospital stays and anything and everything medical related so much easier!
Watching your videos has really changed my life. Because of you I'm talking better care of my health (instead of trying to avoid facing the truth) and I'm finally accomplishing things I've wanted and needed to do for a long time. I hear Mary in my mind telling me to do what I think I can't do and I'm finding ways to get the yucky stuff done 👍 I just wanted to let you guys know what an inspiration you are. Thanks for being you and for sharing your life with all of us. I'm sure by now you know, but in case you are ever in doubt-you make a difference! Sending you healthy, positive vibes and prayers😊
I love how you live as a unit. You are so supportive of each other. ❤️
So glad Mary is feeling better too!
I just had a feeding tube placed a month ago now, but they thought I needed an antibiotic for a slight infection. I cant take anything for staph so they gave me something that had a mild side effect. After 2 doses I had way more side effects than I did before and had to discontinue it. I see you push through so much more than I think I ever would. Mary you're such an inspiration.
"And I've never been to Boston in the Fall, we are the Pirates who don't do anything"....veggie tails, Anyone else think about this song while Peter was outside? 😁 Keep Fighting Mary!
Absolutely!!!!
This is what I was going to comment!
YUP!! My family still thinks of Veggie Tales when we say certain words/phrases!
Yes! Paused at 12:59 to comment and of course, some others on the same wavelength :)
Yeah! Me too
That was my favorite silly song
I'm glad things have settled down some for you. I hated seeing you look discouraged earlier in the week. Thank you for sharing the reality of the ups and downs that come with chronic illness
You look better than you did a few days ago (don’t take that wrong) I was worried about you so much. We serve an Almighty God who is our Healer and I just gave Him all my worries about you. He is in Control all the time! Continuing to pray for you.
1 Peter 2:24 - Who his own self bare our sins in his own body on the tree, that we, being dead to sins, should live unto righteousness: by whose stripes ye were healed.
I am so glad that hook didn’t hit you in the eye Peter! I am so happy that you’re feeling better Mary! And I’ve never been to Boston before, but I imagine it is super nice there.
Hang in there sweetness!!! We are cheering for u!! Isn’t it awesome when you start to feel a little better after being really sick?? I think it feels extra special!! I’m not sure if those without chronic illness would quite understand.
I pray that you will get your appetite back even if only a small hunger. With my daughter being a chronically ill patient I understand about drawing from the port versus the given vein. She has been over 30 days without a bite of food but she was on TPNs. There are many difficulties to overcome with home IVs. It is doable. Love and prayers, Dana & Mary
I'm glad you are feeling better. I agree with Peter, you are a trooper. Peter, you are such a supportive caregiver. Your blanket matches the wall behind you. Royal purple for an amazing person! Ouch Peter. Beautiful view out the hospital window.
The two of you are amazing! I found you a few weeks ago, and are watching new and old vlogs mostly every day. You inspire me to fight harder and stay more positive. I am Swedish and live in northern Sweden, and get almost no help here. Most doctors do not know anything about my diseases and my body falls apart more and more, and I worry what will happen since one of my diseases are progressive and I keep on getting worse and worse for every year. (Ehler Danlos Syndrome ) I myself have several chronicles diseases, and every day is a fight. Some days the pain in my whole body is so awful I want to die, and I almost give up. Watching your vlogs help me! It reminds me that I need to stay strong, even when it seems impossible.
It seems to be so much more help in the US than here, no matter what disease you have. I watch several vlogs of people that suffer from Ehler Danlos syndrome like me, and they get soooo much help and devices and stuff, I get nothing. I ask for finger splints to keep my knuckles from dislocating at night, and they have never heard of those existing. I know they exist in the US. It is frustrating.
But anyway, I just had to write to you to tell you how much you help me and how amazing you both are! It seems like Sweden has least people suffering from CF in the world or something like that.(if I remember it correctley) At least a lot fewer people have it than other countries, did you know that?
Hugs to you both!!! ❤❤
Disa from Sweden
This afternoon I had my PFT's and they draw a ABG.
Both were not easy at all, and the results are bad.
But thinking of you, and see you daily struggle with all this stuff made me thankful for don't have to do both so often as you do. Because it wears you out. And it makes me thankful that my health could be a lot worse than it is right now.
And I'm thankful that I'm almost living next to the hospital, so no 1 hour care drive for me.
So, there's a lot to be thankful for!
Thank you for inspiring me and so many others.
I'm praying for you both. God bless!🙏🏻
Sending love from the Netherlands!❤
Peter, when you said "Have you ever been to Boston in the fall?" all I could think of was the song from Veggie Tales "The Pirates Who Don't Do Anything"...."and I've never been to Bawston in the fawl...." lol lol lol.
Robin Schaefer can’t get it out of my head now.....
I'm so glad you're feeling better Mary!
Love how Mary was watching Rhett and link on her laptop. Love you guys
I'm in the hospital often with my son and I don't even understand why there is beeping in the patients room - drives me crazy too. Should have a centralized area that deals with the beeping and alarms to let the nurses/doctors know whats happening - no need for the patient and loved one with them hear any of it in my opinion, especially throughout the night. You guys are in our hearts and prayers
Praying for you all as always! 💕💕
Sorry Peter but I got those uncontrollable giggles when you were telling us about how you got the bump on your head. I really don think it was funny that you got hurt but it was just so funny the way you told the story. Thanks, I needed the laugh because I hadn’t laughed yet today. It sure felt good! It also reminded me of once when I was at my Mom’s house with my sister and we didn’t have any of our kids with us so it was just the three of us. I took my shower and was going down the hall to the den where my mom and sister were. I was looking down buttoning my night gown and walked right into a hollow wooden sliding door. My head hit full on first and then the rest of my body! It scared the heck out of my mom and sister because it made this huge ‘BOOM’ that reverberated for what seemed like several minutes! We laughed all night about that one!🤪😝😂
You do wear a lot of hats, Peter don't you. We worry so much about Mary, but you are her hero and do a lot we don't see. God Bless you both.
So glad to see "our" Mary back. Your smile is a million dollar smile Mary. You inspire so many people, you have no idea. I can see the spirit of the Lord in you, you just shine. I wish I could have handled my major health problems I had for three years like you do. I didn't know you then. God gives us each talents or fruits of the spirit & yours is Joy for sure. Glad to see some improvement though, do what you think you can't do!!!! Love you guys & praying all the time.
Hey Peter and Mary! I'm so happy to see you're feeling more like yourself. Hopefully this hospital visit will be a short one and you can get back out on your boat.
My grandmother has heart failure and she has to weigh the risks vs benefits about her kidneys and medication too. The benefits are sometimes greater than the risks, and it is a very fine line between the two. She is a fighter and has fought for years. Also, I think the Veggie tale reference was funny when Peter said have you ever been to Boston in the Fall
Hi Mary and Peter! Glad to see Mary is back the way she said! I was going to ask where you are and then you say "Boston".....Can I ask you guys something....? Are you guys far from your relatives? We always see you by yourselves....I mean....having somebody else to help in any possible way....pls, I do not mean to be invasive in your private life.....but if you consider it too way far, pls feel free, of course, not to answer it! Big hug to both you you!
With the port make sure they do a proper waste. Sometimes it’s missed or forgotten and that affects results. They need a good chunk of blood wasted then take the clean blood and it allows the port draws to be more accurate. Peripheral is more accurate though.
Does your area not have a home care nurse that can do blood draws daily at home? We have those to prevent hospital admissions and such and help qualify of life.
Yes Peter ,I was in Boston for many years in the Fall. It is absolutely beautiful. Feel better fast Mary. 🙏
So glad you are feeling better. ❤
Mary, you must be feeling better as you are back to your medical nerd self again, rationalizing out everything, love it. Peter you were lucky you didn't take an eye out or break your teeth on that clothes hook on the back of the bathroom door.
Hi guys, I’m so glad Mary is human again and alive with no headache.....lol. I am in the Hsp too and your vlogs are helping me through a tough Hsp admission and stay Hugs from Ohio to all of you, Mary,Peter, and cutie pie Ollie Boy 🙂
So glad to see you smiling again! Your room is so spacious.
So proud of you Mary for pushing thru ! Continued prayers for you both 🙏💌
I’m so glad you feel like yourself again.
You are both amazing. You are on top of everything!
That hook Peter banged his head on! The hospital shouldn't have anything hostile like that--it's hard enough! Pile something bright and fluffy on that hook. Hang a warning sign on top of it. Maybe an orange reflector, too.
Have you considered ear plugs? And maybe eye masks, too. And maybe an inflatable mat for sleeping?
You have been an encouragement to me.
Thanks for your sweet posts.
You are so brave glad your feeling better God bless you both
I started a new IBS C medication called linzess and been dealing with thankfully minor atm side effects like slight cramps and bloating. I have been noticing a difference in my bms tho today so happy!!!!!
Just a hint... always be aware with bathroom locations while on linzess. My mom was on that and she pooped her pants in the grocery store. It hit her QUICK and there was nothing she could do 😕😖
Martin and I are so thankful to see your improvement, however small, every day. Shabbat Shalom guys with love from us 4 to you 3 xxxxxxxxxxxxxxx
As I recall, Mary has a single lumen port and there generally isn't any reason not to draw labs from her port. If an IV is already attached then it needs to be disconnected and then one needs to wait for 2 minutes, flush and pull back 5ml of waste. Then the labs can be drawn - a similar procedure would be used if she had a PICC line. However, some doctors don't want some patients to use their ports for labs because they want them to be usable exclusively for Chemo etc.; this probably isn't the case for Mary. From what I've seen Peter is very competent in using/accessing her port and could easily learn the proper procedure to draw her labs even when she is at home- then he could deliver the tubes to their local lab- this would certainly help avoid all of the venous draws and bruises.
If blood draws from your port are giving fuzzy numbers, they need to withdraw more blood prior to the blood they want to test, this blood should be put back into your port line. So withdraw 15 cc blood. Change syringe and withdraw blood needed for labs, return 15cc blood into port line. Done in oncology where I worked all the time..
Mary your positive thinking is just amazing to me. God bless you and Peter. Ollie too.
I 100% understand this. The medication I take for my gastroparesis can cause an irreversible disorder called tardive dyskinesia, which is basically uncontrollable muscle spasms. So far I’ve been lucky to avoid it, but it’s always a concern in the back of my mind.
I can't hear "ceftaroline" without singing it in my head to the tune of "Sweet Caroline."
ANyone else think of the Veggie Tales when Peter mentioned Boston in the fall? It's from the song the Pirates who don't do anything. LOL
Faith Hope Love I laughed out loud. I was hoping someone would comment on that
Hey Mary I know how you feel I was born without my Thyroid Gland I have to take my med every morning I can’t live out it, and many other things
Praying that you guys can get some better sleep tonight! I know it is so rough in the hospital and I don't blame you for wanting to do the IVs at home!
Hope Mary's bloods improve and also her kidneys. You are a really good devoted husband Peter staying with Mary in the hospita. Continually praying for you
I’m weird but I love how your blanket matches the accent wall! #Weird!
Weird is awesome dude:)
Lol I never would have noticed. That's not weird that's a super power 😀
Jeri-Ann Henson I thought the same!
Brain Surgery after Brain Surgery to treat Hydrocephalus, but that is my reality. I’m great full to be beating the odds even day because the day I was born my parents were told I would never walk or talk. But I can walk and talk. What is even better is I am able to attend normal college course.
i'm so glad you're feeling so much better Mary!!!!!! yay!!!!!!!!!!!
Hi, Mary. I’ve been praying for you. I check on you daily but am not a big commenter. Having 2 of my kiddos with a rare autoimmune disease, I know all about hospital stays and blood draws. My son has been in before and had to have his IV restarted so many times. They have put them everywhere you can imagine. It definitely brought this mama to tears. When he was younger they even had to take blood from the top of his foot.😭. On a side note am I the only one that noticed Mary was watching GMM? 🤣
BelieveInMiracles - it can be very difficult to keep IV “healthy” in young kids because they move around so much! If the kids are babies, then the best place to put an IV is the scalp...but that is harder for Mom’s to see...butt so much more easier to put in and leave in and left painful!
It IS good you are in hospital. Lab results quicker and doctors available. You did the right thing. Remember 50 yrs ago people with CF just died. We have come a long way and maybe a cure in our lifetime!
Love how Mary watches, and often quotes, GMM 😇🌟❤️
Glad to see you're feeling better!!💕
Haha I noticed Mary is watching GMM! I love Rhett and Link. I'm happy Mary is feeling better. I hope everything keeps pushing in the right direction!
Still sending lots of love and prayers for you guys!🙏🏻🙏🏻🙏🏻
I saw Rhett and Link on Mary’s computer...lol! I love them!
Thank you for sharing your journey with us! God bless and lots of prayers and hugs headed your way!
Goodnight Frey Family! Sure glad that you are feeling better💖
10:16 I booped Ollie's nose, and then I booped Peter's nose too.... I never did that before.
Praying for you guys as you keep fighting and for hurricane people!!✝️🙏🏻❤️
You're looking better and better everyday Mary! Makes my day! and you sound much better too, so not out of breath as before, yay!! I wonder if the chest PT helps as the antibiotics do their thing, Ive often noticed that. Helps get rid of that nasty bacteria! Its too bad you couldnt have a nurse come by your house and do that on a daily basis. And Peter, I must say, you look mighty handsome today in your plaid shirt, BTW you're handsome always. :-) Sending my love and hugs to the 3 of you, see you tomorrow!
What a beautiful view of the city! 😍
YAY! mary is feeling better and I hope the hurricane goes away for you all over there soon!
You guys are so cute together! You guys are one of my favorite couples on UA-cam.
Omg! My two year old son who isn’t talking to much ( 3 in April) just sang the into to your video! Shows I watch you guys a lot I guess lol omg wish I got that on video!
I am a cancer patient so I know things are different but can they take your port out and give you a tunnel picc line in your chest? That's what I have and every nurse talks about how much better they are!! They are safer and can be used for IVs and blood draws!! Also I use to do the Neupogen shots but recently was changed to the Neulasta On-pro patch! Your attitude is amazing, keep it up!! God is watching over both of us!! ❤❤
Katie Terry they don’t do tunnel piccs that much anymore. They’re not good long term either.
There is a much higher risk of infection with a picc over a port and with Mary's MRSA a picc is a bad idea.
Also if she had a PICC and was getting antibiotics through it they wouldn’t be able to use it for blood work because the line could contain traces of the drugs and mess up the numbers.
Oh okay. I've had mine for 3 months so far with possibly 3 more months to go. My doctors decided it was safer for me to do this than a port. They said picc lines in the arms get easily infected so they did it in my chest. I must have missed the MRSA part, I didn't realize she had that! I was just trying to throw out a suggestion. 😁😁
Katie Terry piccs you can’t swim or do baths without planning. Ports you can
Sorry, I cracked up at Peter hitting his head on the door hook. That's basically my life!
Praying for you! I hope things get better soon!
Happy to see you human again and happy 😍😍
I'm dealing with a problem with my heart failure meds. Because I've dropped so much weight because I have changed my lifestyle and am in eating disorder treatment for binge eating. So, yea, my BP keeps dropping low enough to make me faint. So, anyways I know about tweaking meds for a life threatening condition. My prayers are with both of you.
I am so thankful for you guys, thank you for doing what you do.
Don't forget you're a trooper too Peter! 💪
You are both a trooper. Completely belong to each other. ❤️❤️❤️
Glad to see you feeling better . Love your vlogs😄
Mary your blanket matches the wall, wow.
Glad to see a smile on Mary's face! That colistin is no bueno!
Thumbs up for doing the walk test, Mary!
Mary, you look and sound so much better then this past week! So so happy!
I would LOVE to go to Boston in the fall one day. I’m sure it’s gorgeous :) Enjoy the weekend you guys, and keep up the positive actions and attitudes, it sure makes for better days. xo love ya all
Mary Reynolds eh, Boston in the fall is....Boston a little less humid and hot. It’s still just a city. And there are so many things to do...in the summer! But when it gets colder, no thanks. But the rest of Massachusetts in the fall is gorgeous! Apple picking, jumping in leaves, and taking long drives. Definitely worth a visit!
Did anyone else start singing "The Pirates Who Don't Do Anything" from VeggieTales when Peter asked "Have you ever been to Boston in the fall?"
I would like to ask why Mary doesn’t do chest PT at home anymore. In all your admissions it seems to be a compulsory part of the hospital CF regimen, in addition to the vest you do twice every day, so they obviously don’t consider the vest to be a replacement for the PT. It seems the PT is a complementary mode of treatment as necessary as the vest. If you maintained the percussive chest PT at home, as well as the vest, maybe the secretions wouldn’t be able to build up in your chest as much as they do, reducing the severity and frequency of the infection cycles. Neither of you have to leave your home for work (except for Peter’s Sunday morning church services), so could it be fit into your routine at least a few days a week? I realize it’s Peter who would have to do it for you, but if it helped prevent or at least decrease the frequency of infections, there would be that many more weeks of him not mixing and giving IV meds night and day, or living out of a suitcase in hospital. Not a bad trade maybe? I’m not saying it’s “the” answer, but perhaps a valuable tool in your arsenal against the disease. I believe you made a video or two about chest PT in the past, so it was something that you did regularly before. Just wondering why you don’t do it except in hospital. I love your videos and respect both of you. You are excellent ambassadors for CF, as well as for a beautiful marriage.
Glad your doing better Mary 😀
Hey Mary.. i am always thinking about you and hope that your going to feel bether ❤
Welcome back!!
Hey peter and Mary! It was great meeting you Peter and Oliver. A little bit about me is I am 13 and I have spina bifida. I love watching your videos. 💖💖
I’ve never been to Boston, MA ever! But it is on my list.
Peter, you are one of the busiest men I've ever seen!
Mary, you're right about meds and the risk vs benefits. Every medication I'm on has side effects to my kidneys and liver, or my digestive tract. But I have to be weaned very slowly off every one of them, should that time come, because those side effects are far worse!
I'm so glad you feel better
Mary, you and Peter talk about kidney function, and I just wanted to clarify, you were talking about creatinine going up, right? I have kidney disease, and my creatinine recently went from 1.61 to 1.8, but my filtration rate actually improved, from 19 % to 29%...
Yes....the infernal beeping and no sleeping. Esp. if hospital policy allows for night time visitors and you're in a double occupancy room. Perks of port......yep. No perks if they have to use other veins... Etc. I get it ...and yes, one must take everything w a grain of salt and a good sense of humor....which you all seem to be in good humor today! Hugs your way guys.....
I went to open my car door the other day and somehow managed to whack myself in the forehead when I did it? I don’t even know...But I now have a mark on my forehead as well! Praying for you guys! 💜
You look like your feeling better. Im so glad. ❤
Mary, where did you get your purple muslin blanket? I am praying for you and I know that God has you in the palm of His hand.
I can’t remember exactly where she got it but she explains it in the New Guest Room Tour video I think!
Thank you Natalie Heidgerken! Do you happen to know the date of that vlog? I will try to find it without the date if I don't hear back from you.
Sue O' It was one January 26, 2017! 💚
I did find it, thank you so much for your help Natalie Heidgerken. Sadly that Etsy shop is closed due to health issues. ;0( I am so sad for the owner. I will try to find fabric at Walmart and see if I can make my own.
Sue O' that is so sad! I’ve been wanting to order a blanket for a while. Praying both she and Mary find comfort in His love!
Fascinating that they have disposable vests!