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Hospitalized again, then again into ICU, out of icu and now in Hospice

Been a hell of a ride in 2 weeks. Survived several day stint in ICU on apap and/ or cpap. Found opening at hospice facility and been here 24/7 for 8 days so far. Currently looking to transfer me to home next Monday but working out getting supplies and home care I need which roughly estimated is gonna b 6k a month. Trying to hang in til April cause my 1st grandchild is due.
Beginning to think if it is selfish for wanting to hang in to c grandchild and putting my family thru all the stress I can see they are going.

  1. I hope You can S👁👁 First GrandChild👶🏻🥰🥰, please do not stress Your self out. Paul

    1. Hi Paul, and thank you for updating the community with your present medical situation. I am glad to hear you were cared for in the ICU and then, were discharged from the critical care environment. I also do understand all the implications and ramifications of hospice care, both in the facility and next, when you are discharged to your home. My heart goes out to you, Paul!
      If you can manage it all, with your family's support, nothing can be sweeter than being here for your first grandchild - it is a feeling like no other! I can tell you that from my own personal experience. To answer your question, my feeling is, being here for your grandchild is what life is all about!!
      We are all here pulling for you, Paul!!
      Warmly,
      Leon (site moderator COPD.net)

      1. I had written earlier that in another day I would find out if I was accepted into the lung transplant program at the Cleveland clinic that day was April 12. 2023. Here it is two days later and I am sad to report I was too high a risk to be approved. What I do next is To go back looking for ways to enjoy what time I have left. As my doctor said, I can tell you the best solution: a lung transplant. But I can tell you a better solution: no transplant
        Hec explained that I will risk transplant such as mine would likely cause substantial recovery problems. And the outlook for me was better without a transplant than going ahead with one.! What a lesson to learn.

      2. Hi again, toplapi - it's good to 'see' you posting here again and sharing this update (such as it is), with the community. I did go back and review all our conversations regarding the complexity of medical issues you have been dealing with for the past 20 years or so. (for ease of reference, here is a the link to all your posts since you began conversing here in January of this year: https://copd.net/moderation/users/6720130).
        After re-reading all there was, I can tell you I understand the disappointment you may be feeling since this explanation was given to you about not being a suitable candidate for lung transplantation. I also read the option of 'no transplantation' which, as the doctor explained, may be a better solution in your case. As with any medical procedure, each one is not necessarily the best choice for every patient. This may be the viewpoint in your particular case with your overall health!
        I admire your new outlook and the future plans you are resolving to insure. I agree with the way you're managing this new information. Your internal strength sets a good example for the rest of us! Stay strong in your resolve and move forward with the best life you can live. That is what this world is all about! It's not always easy (I can share that from my own health condition(s) and clinical experience), but - it's clearly the way to be!
        Again, you are indeed fortunate to have the support of a wonderful wife and loving family.
        Naturally, if there is anything we can do, please let me or any other moderator / team member know. You are always welcome here!
        Warmest regards,
        Leon (site moderator COPD.net)

    2. Thx 4 reply n encouragement. The hospice staff have been great. They are open to me keeping my medication cycle open and variable to my changing needs especially stress level that can quickly change into a panic attack. So I have access to a quick acting one as a pill that lasts about 4 hrs, or another pill that takes about an hour to kick in but lasts the night and on 2 occasions able to get the quick acting as injectable which took effect within minutes. Same for the pain management. And they understand I prefer not to take meds but attempt alternative relaxation techniques and even arranged massage therapy!
      As an avid gardener watching my large backyard garden areas slowly get overgrown with weeds and neglect due to my worsening condition I talked with several staff and have arranged to get help and provide my 30+ years of experience to get several garden areas done at the hospice location including butterfly gardens and plants. I specialize in native, adaptive, and xeriscape plants for the central texas area. It will be nice to give back and hopefully provide a relaxing area for both patients, staff, and visitors. Once again, I finished my novel for tonight LOL. Oh, and they allow me to have my dog with me all the time in my room!! Be well, be strong, be kind.❤

      1. I have lung disease symptoms so much the same but my doctor calls my disease chronic hypersensitivity pneumonitis. I’ve made some slow progress with managing the symptoms . But with stress and anxiety I, too, get panic attacks. Can you share with me the names of the medicines you used? — the one that was quick acting and the longer life one. These panic attacks were like nothing I ever experienced except maybe the extreme body chills I got during my bout 20 years ago with leukemia. Thx so much!

      2. First, my best wishes and I'm glad to share the meds I've used including other important information. I was diagnosed with generalized anxiety disorder when my wife was in hospice. After her passing and raising my 2 children and dealing with legal issues that went on for several years, a heart attack, major back surgery. Well, let's say the generalized never left. At that time I was put on a low dose of .5 Clonazepam as needed. And I found other outlets such as gardening, hiking, traveling, swimming and even PC gaming. I personally prefer not to take meds when I can diffuse anxiety without them.


        The Clonazepam I'm currently on is 1 mg which for me takes longer to kick in, 30-45 min but its effect will generally last 6-8 hrs.


        For panic attacks I was prescribed 1 mg Xanax, with directions to take 1 or 2 tablets every 4 hrs as needed. For me it kicks in just about 10-15 min.


        And the best advice I can give is pay attention to what your body is telling you. For instance my body will just feel off for some reason and i can sense a sensation, if that makes sense. I may become slightly nervous for no apparent reason. That's when i will take the Clonazepam, find some little thing to keep me busy awhile and I'm good for 6-8 hrs.


        My telltale sign a panic attack is gonna happen is I find myself fidgeting, foot tapping, constantly moving my fingers or tapping my head. Its obvious enough for friends and family to ask if im ok. That's when I take Xanax and at times I need a second dose in 3 hrs. But it kicks in about 10-15 min.


        Both meds I've mentioned also go by other generic or brand names. And there are also other medications. As after being sent home from hospice I got new ones which appear to work just as well.


        Most importantly be sure to consult with your doctor as these medications can effect other medications you may take.


        I hope this helped you some. I KNOW panic attacks can be so frightening and scary. I've found that saying I've been through this before, do my breathing exercises, and this WILL end like the others and try my best to remain calm helps me a lot.
        My thoughts are with you.
        Be strong, be well, be kind❤



    3. Paul, it sounds like the inpatient hospice has been comfortable -- I am so glad to hear this and so touched that they let your dog hang around! I am sure your pup brings joy not only to you, but all the staff as well. 😀 And I think it's a fantastic idea to share your gardening knowledge with the facility. So many people find peace, quiet moments and even spirituality in nature ... it will be a continuous gift for years to come.

      For what it's worth, you have made and continue to make an impact here on the site. We are glad to have you and will be here to support you and chat as often as you'd like. And truly, April is not that far away. 😀 Take each day as it comes. Hugs and best wishes to you! -Melissa, copd.net team

      1. Thx, had been HOSPITALIZED twice with AFIB!!
        Can COPD and DIABETES bring it on?
        It CONSIDERED HEART🫀DISEASE & SERIOUS?

      2. Hi again, hite - I am sorry to hear you were hospitalized twice with atrial fibrillation. In order to determine what brought on the atrial fibrillation in your particular case, you will most likely want to speak with the physician(s) who took care of you. If you decide to do this, please do check back and let us know how the conversation turned out. How are you feeling nowadays. Has the heart arrhythmia been brought under control? Wishing you well, Leon L (author/moderator)

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