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Thread: Jim's Journey

  1. #111
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    Default Meds, iPads, Driving, and Blood Pressure

    ((((((Hugs to All)))))) ~

    ANN ~

    Thank you so much for this warning and for the link. Are there any other options, besides Nexium?

    It perturbs me that Dr. K disregards the cautions for Nexium, like Jim's on a diuretic and had iron infusions. Then, he recommends Zantac, which has been found to have a carcinogen. We're fighting cancer, so, yeah, let's give him something that can give him more cancer.

    When I picked up Jim's meds this morning, I spoke to the pharmacist about Nexium and the warnings. She gave me the spiel about all drugs have side effects and adverse reactions, most of which are rare.

    I didn't want to be upset, but she knows about Jonathan, and how old he was, and she knows what Jim's been taking. I'm asking about side effects and reactions, because I do my homework, and I know a thing or two about pharmaceuticals. Before the internet, I bought a new PDR every year and used it extensively for my boys, family, and friends. To this day, my friends ask me to look up a drug for them. Not that they can't, but they know I'll understand everything in the description of the drug.

    The pharmacist asked if Jim has reflux. I told her that he doesn't have overt symptoms of reflux, no belching, burping, food coming back up, difficulty swallowing, etc. But Dr. K is worried about "sub-clinical problems." Ones, which have no overt symptoms, I reckon, because Jim is taking Prednisone.

    I told her about his low WBC & RBC, and the iron infusions, and she nodded, "Oh, I see. Yes, GERD can cause that, as can steroids."

    So, I came home with Prednisone and Nexium, the two battling pharmaceuticals. Here, let's give you this, and if you have a problem with that, we'll give you this, and if that gives you a problem, you can take this. ETC.

    I'm disinclined to start Jim on Nexium right after his iron infusions, no matter what anyone says, because it's clearly there as a caution in the NIH overview of Nexium.

    I don't know what to do our where to turn. GAH! So frustrated right now.

    JIM'S UPDATE

    Last night, I was taking Jim's BP every 1/2 hour. When it dropped to 98/57, I texted Nancy, but it was late, and she hasn't replied. Only 1/2 hour later, after Jim had gone to the bathroom, his BP was 122/63.

    Today, it's staying in the 103-109/58-65 range.

    My concern is that iron infusions can cause a drop in blood pressure, and Jim already has low blood pressure, some of which may be attributable to the low WBC & RBC.

    Jim was incredibly tired, especially after 2 days of being out and having infusions. On the one hand, it stimulated him to be out and see his nurse pals and others. On the other hand, it was exertion and wearing.

    Because he had to take his Lasix late afternoon/evening, he was up most of the night going to the bathroom. Unfortunately, he was constipated.

    This morning, he added 5 prunes to his cereal/fruit. They were effective this afternoon, and we are truly grateful.

    He wanted scrambled eggs on toast for lunch, and a bowl of creamy tomato soup. Scarfed it back.

    We measure his midriff several times a day, and it is remaining about the same, even without the usual BM output. This is a good sign.

    SATS: 95 HR:68-72 Weight stable.

    iPads and Driving

    He is getting the gist of the iPad, which he frequently calls "laptop," or "desktop." He says, "You know what I mean!" And I tell him that I do, but someone else might not, in case it was lost. We don't want someone looking for a laptop, when we've lost an iPad.

    Last night, Jim apologized for telling me how to drive to the medical center. "I don't know why I did that. I know that you are a very competent and careful driver, honey. I'm really sorry, because I know I made you crazy."

    I said, "Yes, you did, but most of all that makes it dangerous on the road for me to be distracted by your Driver's Ed class. I know you aren't yourself, honey. It's okay. Just don't do it again!"

    As I was leaving for the pharmacy this morning, I called to Jim, "Honey, you want to ride shotgun and tell me how to drive 2 miles?"

    He gave me the side eye, "Sure!"

    "Oops! Sorry! Gotta Go! I love you!"

    At least we can see the humor in these things, laugh about it together, and keep some semblance of balance.

    Now that he has an iPad, he wants to find motorcycle sidecar racing on it. The best I could do for him today is on YouTube. I'm so happy that he wants to find things and watch them or read them. This has really peaked his interest and perked up his brain.

    Several times yesterday at the infusion, I reminded him that the stylus is not a hammer. "Honey, you don't have to poke a hole in the iPad. Light touch, babe, light touch."

    John texted us that he wants to get us a speaker and hook us up to Spotify. I laughed, and texted back, "One new technological device at a time. We're old."

    Life's adventures ... and lessons.

    I'm really missing our boys and aching to hold them in my arms tonight. We're one day farther apart but one day closer to being reunited. While to some that may seem to be a morbid thought, to us, it is a joyful thought. Right now, our only fear is leaving each other.

    Yesterday, I remarked that the van, like us was making creaking noises. Jim said, "Yeah, she needs to be serviced and have everything sprayed with lubricant."

    "Like us. I'll do that in my spare time, honey."

    Thank you, ANN, and everyone for your love, support, guidance, information, prayers, and positive healing energy. We are so grateful and hold all of you and your loved ones in our prayers.

    Love & Light,



    Rose
    Mom to Jon, 49, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003. Our Angel Jon received his wings April 2019. Now, they watch over Jim and me.

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  3. #112
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    Rose, I donít think you need to worry too much about the Nexium. It is only a problem because it reduces the acidity in the stomach and acid is what allows us to absorb iron from our food. Since Jim just received a whopping IV dose, there is not a big need for concern right at this moment. The risks of micro bleeds are greater than the malabsorption from food sources.

    Iron in any source can cause constipation issues. Have you ever looked up the recipe for Yakima Valley fruit paste for constipation? I just got my neighbor started on that and she is doing much better. Just a thought. It makes a huge batch so you wouldnít have to make it often.

    Take care!

    C
    Last edited by callyflower; 09-21-2019 at 05:25 PM.

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  5. #113
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    Default Adverse Reaction To Nexium?

    ((((((Hugs to All)))))) ~

    callyflower ~

    We took your advice today, and Jim had one Nexium. He took it an hour before lunch, which is what the warning on the bottle states, instead of a half hour, which is what the pharmacist told me.

    In that hour, Jim began to experience unending cramping in his hands and fingers. He couldn't hold onto anything, write in his crossword book on the toilet, grasp anything. It goes away for a few minutes, then it returns.

    We've determined that he does have a mild case of peripheral neuropathy now. It was simply a matter of time, before it reared its ugly head, after all of the chemo, the Opdivo, and the countless other drugs, which he's been given in nearly 3 years.

    Fortunately, the 5 prunes with his cereal, raisins, almonds and peaches/pears diced in their own juice is working for Jim in the BM department. It's not as much as he was going before, but it's enough to keep him on an even keel and not need further intervention. We have MOM on hand, but I don't know if that is contraindicated, if he's on Nexium.

    I just took Jim's vitals, and they are all very good. SATS are 97, which is outstanding. Jim says that the cramping is lessening, but he felt a significant increase about 45 minutes after he took his dose. He said that if this is all he has to deal with taking Nexium, he's willing to take it again tomorrow.

    I said that we should see how well he does from now until tomorrow, and then make our decision. Sure, it can subside, and then if he keeps taking it, it could come back and maybe never subside again.

    Jonathan was given Reglan, against my statement that he should not receive it, and common sense medical policy for patients on Dilantin, after his colostomy in 2004. He seized immediately for 45 minutes requiring 8 mg of Ativan to end it.

    Jim was with Jon and asked the night nurse what she was giving to him. She said "Reglan." Jim shouted, "NO! My wife says he can't have that! It's in his chart!"

    Jon began seizing, and Jim called me. I told him to get the nurse, get Ativan on board, and then let me talk to her and the doctor on call. After all of that, it wasn't charted for Jon, and the next morning, as I walked into Jon's room, he was seizing. The day nurse gave him Reglan.

    Jonathan's health decline took off from there. Until his death, he was plagued with restless legs, spasms in his arms, pounding his chest during his sleep, which is why we had to use soft restraints, so that he wouldn't hurt himself.

    Synthroid was forced upon us for Jonathan, and on the smallest dose, as I expected, Jonathan had every side effect listed for that drug.

    Opdivo caused Jim horrific RA pain for 10 days, while Dr. P ignored him and argued that he never told her he had RA.

    I have 50 years trying to prevent these catastrophic reactions for my boys, other family members, friends, and now Jim.

    When the pharmacist said, "But, it's rare," I just wanted to scream. If I had $100 for every time I heard that comment, I would invest it all in finding a cure for cancer.

    Rare is Jonathan and Michael. Rare is Jim surpassing the grim reaper prediction of 3-6 months in 2017. Rare is how we all found each other. Rare is Opdivo cutting Jim's tumor in half after one dose. Rare is not, if you give a contraindicated drug to a patient, and that patient has an adverse reaction.

    It's always a risk/benefit analysis with any drug. But if a drug is clearly contraindicated, as it was with Reglan and Synthroid for Jonathan, more harm than help is done. And it cannot be undone.

    So, I proceed with caution feeling like our hands are tied. We're treating something we don't even know exists. Let's test him for GERD before we give him meds to treat it. We have a wonderful GI, who changed Jon's Gtube at home every year. I'm sure he would be happy to treat Jim.

    And that is where I am going next with Dr. K. To ask for a consult with our GI.

    But, first, Jim has a CT scan on Tuesday. One thing at a time, when there are thousands of things needing to be addressed.

    Thank you callyflower, and all of our friends here, for you guidance, advice, experience, knowledge, love, prayers, and support. Our prayers are with you and your loved ones always.

    Love & Light,



    Rose
    Mom to Jon, 49, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003. Our Angel Jon received his wings April 2019. Now, they watch over Jim and me.

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  7. #114
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    Nexium isnít just for reflex. Itís commonly given with steroids or other meds that may cause stomach irritation. It was recommended I use one while on steroids all those years.

    Sorry itís a scanxiety time again. Hope the process goes easily.

    C
    Last edited by callyflower; 09-23-2019 at 05:54 AM.

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  9. #115
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    I'm glad the Iron Infusions went pretty well. I'm so glad Jim has the gist of the iPad now! I knew Jim would get it! Sorry about the possible medication reactions, bad cop experiences and the nose bleed! Prayers to you always!

    Btw off topic but I won't have consistent internet from Sept 26th to Sept 29th because its road trip time for me! So don't be alarmed if I don't post much.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

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  11. #116
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    :) Rose I had bad reactions to Nexium too. I began buying the berry flavored Publix brand Tums and taking two when I would have taken Nexium. I still take them today any time I take Ibuprophen.

    I am glad y'all are doing so well. You're both in my prayers daily. Love, Jeanie :)

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  13. #117
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    ((((((Hugs to All)))))) ~

    callyflower ~

    Thank you for the information. Dr. K did mention gastritis with steroids, but he also mentioned GERD. I guess he thinks Jim ups his steroids periodically, but he doesn't. He remains on a daily dose of 10 mg. We'll discuss this with him, when we see him on Friday.

    Mark, who is in charge of the scans, knows Jim and couldn't have been more kind and caring. He took us to a private area, where Jim was able to relax in a recliner, and I sat in a ridiculously hard chair. Jim drank his barium, and Mark brought me a bottle of water. Jim and I watched videos on the iPad for an hour, as we waited for his turn.

    After the scan, while Jim was getting sorted out, Mark returned to me in the little alcove and said, "Jim just told me about your son. I am so sorry. So very sorry. And he had me in tears as he told me about his passing. God bless you both."

    Now we wait. I hope the results will be posted on Jim's portal prior to Friday's appointment. I'd like for us to be prepared.

    funnylegs4 ~

    Neither Jim nor I really have the gist of the iPad yet. I wanted us to watch Paul McCartney's appearance on Stephen Colbert's late night show on YouTube. I spent most of the time, while we waited, trying to get into YouTube, with no success.

    On the way home, at a stop light, John took the iPad and found what we wanted and put the YouTube app on our home page. Before the light changed.

    Jim gets frustrated, and he just uses the stylus anywhere and lands on places he didn't want. After I showed him several times how to stop the video, then close out of full screen, so he could scroll for other videos, he got lost on his own.

    I was able, thanks to John, to find the McCartney videos, and we watched them while we ate dinner. But that wasn't without a lot of kerfuffle going back and forth.

    There are just too many icons all over the "page," and I can't recall which ones do what.

    John tried to reassure us that he's been using his iPad daily for work and personal purposes for 10 years. Naturally, it's easy for him. But, we are elderly, with cognitive issues, and exhaustion, stress, etc., and we're a little slow on the uptake with this new gadget. We love it. And then we don't love it.

    Road trip! Safe travels!

    Jeanie ~

    We have Tums, which we take periodically for gas or heartburn. We don't have that often, thankfully, but Tums does work effectively. If that is an option for Jim, I'd sure prefer it, so I'll ask Dr. K on Friday. Thank you for the suggestion.

    Keep applying the Witch Hazel to your leg. Sending healing prayers for you.

    THE BARKING DOG

    Our neighbors two doors up have a small terrier, who barks constantly. We put up a Dog Silencer, but it didn't work. We had to take it down, because the sound was disturbing our neighbors next door.

    I wrote an email to the association's management asking for a letter to be sent to the owner.

    Today, the dog barked incessantly for 6 hours. When we returned home from the scan, the dog was running up and down the street, as if crazed and confused. The owner was on the driveway, befuddled as to what to do with the dog. So, I walked over to him, and I told him that he had to do something about his dog's barking.

    He replied, "I'm taking him to a shelter. He's too much trouble."

    "Then you should have never gotten him in the first place, if you can't take care of him. I don't want him to go to a shelter! Okay." I walked away, and I saw Jim trying to coax the dog to come to him on our yard. The poor thing has been so neglected, he's afraid of people. I don't even think this man lives there any longer. He just come to feed the dog and leaves.

    Angry and sad, I kept repeating to myself, "We can't take in that dog. It's so much work, and I don't have the time or energy to train and care for him and take him to the vet ... No, we can't take him in."

    Honestly, I think it would break me to have to take care of a dog now. Or any pet. Too much stuff on our floors that a dog could get into and destroy. Meds sitting on a coffee table, so accessible. Nope. Cannot do it.

    Heartbreaking reality.

    Thank you all so much for your advice, suggestions, guidance, love, prayers, and continuing support. We love you and pray for you and your loved ones.

    Love & Light,



    Rose
    Mom to Jon, 49, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003. Our Angel Jon received his wings April 2019. Now, they watch over Jim and me.

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  15. #118
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    It doesn’t matter what the dose. Steroids are rough on the stomach.

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    Hi Rose! I am really glad that Jim is 'getting the iPad' slowly but surely. I do have one suggestion - could you ask John to 'hide' the icons on the homepage that you don't need or use very often? Then, when Jim opens the device, he will only see about 5 or so icons and he won't have to scroll pages of them (John can move the extras to page 2 or 3 etc. of the extra icons so you would swipe to find them). We did this for my Mom - on her home page, there was only mail, google, facebook and youtube. Everything else was hidden on subsequent pages of icons. It's so much easier if there are only a few there when you open it.

    I feel for you so much about your neighbour's dog. If I ran into a situation like that, I would immediately feel responsible .But as you well know, dogs are living creatures and they need care, especially if they've had trauma like this pup has. He will need full time attention. But I bet someone lovely will adopt him. If you thought it would help, you could google 'no kill shelter near me' and suggest your neighbour take the dog to one of those. I hope this little guy will be OK!

    I can just imagine how you had to hold your tongue with the pharmacist. They have no idea who they are talking to - they cannot imagine your life or your knowledge. I remember presenting to a bunch of developmental pediatricians at a conference and I was talking about my way of training nurses at home. I remarked 'sometimes we couldn't keep a nurse if she didn't understand that in our situation, I am the expert." The doctors laughed. I kept a straight face and looked at them in silence. Point made.

    Please wish Jim the best of luck with the scan and all that he has coming up. I am thinking of you both especially with the scan coming up. Sending much love and many prayers, Donna xoxo
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


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  19. #120
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    ((((((Hugs to All)))))) ~

    callyflower ~

    I hear you. We'll probably talk with Dr. K about attempting to wean Jim down to 5 mg/day from 10 mg/day. We discussed this at our May visit with Dr. K, but Jim's attempt to cut down was at the same time he chose to not take his Lasix. I told him that the two shouldn't be tried at once, but he does things his way sometimes. And, unfortunately, he paid for it.

    So far, Jim hasn't had any adverse effects with Nexium. BMs are good too, so the iron infusions didn't disrupt his system either.

    Our late appointment for the scan yesterday messed with his meds schedule. He doesn't want to take Lasix, before he goes out, because he'll be in and out the bathroom during the entire appointment. I told the infusion nurses, "You'd have to set him up in the toilet for an hour and a half."

    Unfortunately, taking it late means he's up all night, as with last night. Now, he also has to fit in Nexium, an hour before a meal, and (I'm choosing) 2 hours between his other meds.

    He chose to take Nexium first, when we got home yesterday. Then, he had to wait an hour to eat, and he hadn't eaten since breakfast at 10 a.m. He was quite hungry by 6 p.m., although the liter of barium filled him up a bit. Then he took his Lasix at 8 p.m. We agreed not to go that route again.

    I emailed Dr. K to ask whether he wants a blood draw on Friday, prior to our visit with him. I hope that he does, because I am anxious to know Jim's blood status. I also asked him to post the CT scan results as soon as he receives them, so that we can go over them, before Friday. I don't want us to be blindsided. I want us to have time to process whatever the results are. Bad or good or in between. I told Dr. K that we had "Scanxiety." I wonder if he's heard the term before. If he says anything about it, I will give you full credit.

    Thank you for sharing your knowledge and experience with us and helping us through this quagmire.

    Love & Light,



    Rose
    Mom to Jon, 49, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003. Our Angel Jon received his wings April 2019. Now, they watch over Jim and me.

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