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How I Feel for the Week Ending 5.30.14…

01 Jun

          Subtitle – 1st Official “Ham” Report on my Hospice Care

Good morning folks, I will say without a doubt this report may not reach you until some Sunday June 1.  Shortly I am heading out the door to see “A million ways to Die in the West.”  Then off to do some chores, and finally I will be back here to semi-devote myself to completing this.  So excuses out-of-the-way, let me get the ball rolling and state that it has been a 2.75 week and solid at that.  No new bug-a-boos have come my way, and I do feel physically better than last week.  I have had no doctor appointments this week, but I was visited by Hospice on Thursday (which is a regularly scheduled event).  I will get must more into that in the word of the week phase of my report.

I know it is boring but my general health remains approximately the same from week to week. The coughing is about the same, tiredness seems normal this week, SOB seems to be a little worse than last week, and my energy level seems to be less because of the higher respirations and SOB. But sometimes a new wrinkle appears.  Over the past several weeks I have been having episodes where I wake in the middle of the night, instantly alert, heart racing, and gasping for a breath of air. C-pap machine is functioning correctly, mask securely in place, and no apparent reason for the sudden awake fullness.   Yet it happens. It began several weeks ago, for the 1st time, and it wasn’t a big deal, I woke and gathered myself, then laid back down as was asleep in minutes.  The event did not occur again for a week or so, it was a touch more dramatic the second time, but in my mind still not enough to raise the alarm. Over the past 2 weeks it has happened several times, the events snap me from a dead rest to full alertness in moments, my heart racing, and it takes several moments for my breathing to normalize (for me). But my adrenaline is amped up and can take 20 mins or more before I feel I can lay down and comfortable get back to sleep.  Being honest while freaky, I was not ready to report it to Doc Lungs or Doc Infectious, but my wife dropped a dime on me and spoke to the hospice folks about it.  Apparently I wasn’t as quiet as I thought I was, and woke my wife. Bless her heart for doing so; I know I would have let it go further without saying anything to anyone.  This issue is now in the hands of Hospice and I have been given add additional medication to take prior to going to sleep.  Used this for the 1st time last night, and I didn’t wake with the jump-start last night. 

Let get the vitals out-of-the-way for the week ending 05.29.14

  • INR = 2.3 taken 05.19.14 – next test 2 or 3 weeks – nothing new here

  • O2 level @ 2.5 LPM = 97 taken on 05.30.14 @ this moment, on 5/29 during Hospice visit it was 90

  • Peak Flow = 222 taken 05.29.14

  • BP = 100/61 taken 05.29.14

  • Heart rate = 112 taken 05.19.14, but taken this moment 101

  • Temp = 98.7 taken 05.29.14

  • Weight = 270 taken 05.29.14

So ends the technical aspect of my “How I Feel This Week” report for the week ending 05.30.14, moving now to the word of the week discussion aspect.  This week I will be making my 1st “Ham’s” official Hospice Report.  In which I will bring you up to date on everything that has happened since I came under the care of Hospice.  Please as you read this understand this is an open report, I will try to make it as full as possible, but I am an old fart and I forget things, or sometimes I don’t think something is important enough to add to the mix.  If I gloss over something, or if you don’t see something you may be looking for please please ask me.  This can only help you, if you are getting the answers you need.  

A brief history, on March 3, 2014, I was advised by Doc Infectious that I should consider Hospice as a medical solution.  His explanation was simple; he no longer had the drugs in his arsenal to completely beat any infection I might encounter.  He went on to explain that he would continue to mix and match and do the best he could but that he had no additional weapons by which to fight the diseases associated with COPD that claim me.  He had consulted with Doc Lungs and they were in semi-agreement.  But Doc Lungs wanted to see me before I went into hospice.  My wife and I saw Doc Lungs on 3/4/14 and when asked specifically if Doc Lungs had any available drugs that would fight my infections he said no, but that if I should choose Hospice he didn’t want me to give up.  I assured him I wouldn’t and I haven’t and I won’t give up.  On 3/5/14 I called the LifePath Hospice, they came to my home hours later, filled in the necessary paper work, did a mini medical review, and started to make plans for me to meet each of the members of the Sapphire Team, which I was now a member. My case was reviewed that day, and I was accepted for Hospice care on 3/6/14.

I have a Blue Cross Blue Shield (BCBS) Fed health insurance, with defined costs, exact co-pays, exact percentages for medicines depending on the tier, and on and on. One of my very 1st questions to the Hospice folks was “how much is this going to cost me.” I was extremely anxious because a brief call to BCBS said they (Hospice) were entitled to a $125 co-pay each time they walked thru the door of my home.  To say I was shocked and amazed is the understatement, and suddenly my fear was that I couldn’t afford to die under Hospice care.  The Hospice folks spent hours trying to convince me that this was not the case, and that Hospice would never come after my family for monies due.  Again and again I asked them to put that on an official document.  I refused to accept the “full” hospice treatment until I was sure what my financial involvement was going to be. This issue was totally resolved when my 1st EOB (explanation of benefits) from BCBS indicated I had a zero balance with Hospice. Even though they had been to my house numerous times over the 1st 30 days, I owed them no money at all.  (If anyone is curious as to why, I will explain as it was explained to me under a separate post) I can talk more about my specific finances regarding Hospice if anyone wants or needs that information.  I can only talk about my situation, in my location, and my results.  Clearly there is a ton of wiggle room in any financial solution.  Once this hurdle was cleared I was ready to fully embrace the Hospice experience. 

Now on to the particulars, I have been under hospice care since 3/5/14.  I am visited at least once a week by a member of my Hospice Team (the team is made up of an Internal Medicine Dr, a RN Care Coordinator, a LPN, a Clinical Mgr, a respiratory specialist, a Social Services Spec, the Chaplain, Hospice Aide, and assorted volunteers), The Doctor, the RN and LPN, respiratory specialist, and Social Svc Spec, are constants, as well as the Chaplin, the Aide and volunteers change. I get to learn about them as they learn about me. Either the RN or LPN collect my vitals each week, Hospice will fill any and all prescriptions relating to my respiratory issues, with the exception of the Spiriva at no cost to me.  One of the Hospice volunteer’s calls at approximately 9:30am each Thursday to see if my medicines are good thru the weekend, if I answer negatively, that prescription is filled and delivered to my home by COB (close of business) Friday. If necessary they will make 2 or 3 trips to my home in a day to affect delivery.  When blood work is required they will come to my house to do the blood draw.  They are also becoming my home oxygen concentrator provider, and will provide whatever other medical equipment needs I have right here in my home, and will do so as the need arises.

When Hospice comes, they will spend anywhere from 60 to 90 minutes with me.  They never hurry, they are always concerned (and it clearly shows), they ask prying questions to make sure I am not holding back, but do so in a gentle way.  I almost feel guilty if I try to hurry them out the door.

It should be noted that you can be kicked out of Hospice.  You are evaluated every 6 months to ensure that you still qualify for Hospice care.  If you improve, you’re out, if you’re not moving towards end of retirement at a rapid enough pace your out.  Folk’s flunking out of Hospice is not a bad thing. And they will welcome you back with open arms when your circumstances change.  I have only been under their care for 2 ½ months and they have been wonderful to me.  I am sure as end of retirement nears, my needs will change as well, and I will report those as long as I can.  But if I have anything to do with it, I maybe kick out of Hospice, smiling at least once. 

As always if you have any questions, concerns, or comments please feel free to bring to my attention, I will answer as completely and honestly as possible. Please take care, Bill

 

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33 responses to “How I Feel for the Week Ending 5.30.14…

  1. Chatter Master

    June 1, 2014 at 10:41 am

    As always Bill i appreciate your candid report. I am thrilled with your boring no change in your condition news!! Though if given an option I would choose a better report 😉

    I appreciate the hospice folks I have met in my line of work. They are truly special people.

     
    • FlaHam

      June 1, 2014 at 4:03 pm

      Colleen, Thank you for your continued support, and your comments, God knows I like those. I will take boring with no change each week LOL LOL, and maybe Hospice will throw me to the curb. LOL LOL. Have a wonderful evening, take care and be safe. Bill

       
      • Chatter Master

        June 1, 2014 at 8:51 pm

        Here’s to HOspice kicking you out!!!!!!!!!!!!!!!!!!!!!!!!!!!! 🙂

         
        • FlaHam

          June 2, 2014 at 12:36 pm

          Colleen, L M F A O ! ! ! ! , This is the only time in my life I have been actively encouraged to fail something. You are so cute. Love Bill

           
          • Chatter Master

            June 2, 2014 at 8:23 pm

            Let’s do it! Your LMFAO is a great start! A good attitude will make it happen. 😉

             
  2. kanzensakura

    June 1, 2014 at 11:29 am

    Oh Bill, may you be kicked out of hospice for years to come! Now about the waking up at night – anxiety? Just prying because you know I do read your numbers, compute them, mull over them, and pray for you and your dear wife and family. If I can’t get a better report, boring is acceptable. you truly inspire me with your candor and your courage. Bless your sweet heart. Hugs.

     
    • FlaHam

      June 1, 2014 at 4:09 pm

      Kanzen, to be honest I am not sure what is causing that problem, and Hospice and I are working on solutions. Personally I don’t believe that it is “anxiety attacks” because I can’t remember the last time I felt the least be anxious about this, but I am smart enough not to rule out anything. I could be and has been suggested it’s an indication of a worsening condition. As long as I wake up in the AM sometime around when I want. I figure I am good to go. As for my numbers is a particular number that I haven’t addressed that I maybe getting an overlooking? Soft smile, all I hope to do is show other folks who are in similar situations that they don’t have to roll over and wait. They can be as active as they can be, and should be. If I make a person giggle a time or two that’s a good thing too. Take care, Be safe, Bill

       
      • kanzensakura

        June 1, 2014 at 5:25 pm

        My mother has a “low grade” or “invisible” anxiety.
        She isn’t aware of it, meaning, she doesn’t have attacks – the classic kind, but she will sometimes be jerky or irritable or wake up during the night having some trouble breathing – not full tilt but a little gaspy and have trouble getting back to sleep. her MD put her on a low dose of one of the “azepams” drugs and that seems to help. she actually even halfs the already low dose and sleeps through. Also, some of the meds have caused her some jerkiness, quick breathing, some night wakings. It is just hard to tell with all else going on with her. She has a severe heart condition, Parkinsons and is 84 so….there ya go. That is why I like your posts. You discuss what is going on with you. you don’t whine, get all angst ridden, dwell on the negative – you define what is going on with you. you live your life, and you enjoy it. And that is also a sign of good character. your O2 and BP is good, other readings are as to be expected. If your O2 went to 90, I have a feeling that would addressed and quickly, same for other readings. You just keep on being you and inspiring us and giving and getting giggles. it is after all, the quality of life. You be good, take care. hugs.

         
        • FlaHam

          June 1, 2014 at 7:53 pm

          Kanzen, Sounds like you mom has been thru hell in a hand basket. But is a real trooper as well. I am sorry she is having such issues, and equally sorry that you have to suffer with her. I am so glad you like what and how I post. Kanzen I will share anything and everything, smiling sometimes I play well with others. LOL. As for me being me, I don’t know any other way to be. If we were to sit across a table and talk, it would be like reading my post, only I can say a lot more words than I can spell. LOL To fight off the night wakes Hospice has proscribed Morphine Sulfate 20 mg/ml solution. I take 0.25 ml at bedtime. I have done so the last 2 nights and I have not awaken with the jump starts either night. So that seems to be working. Please take care, Bill

           
  3. The Persecution of Mildred Dunlap

    June 1, 2014 at 1:12 pm

    I love what and repeat what kanzensakura wrote, may you be kicked out of hospice for years to come. So glad you’re holding steady my friend. Many fat cyber hugs and kisses. ❤

     
    • FlaHam

      June 1, 2014 at 4:11 pm

      Paulette, I do enjoy the fact that we almost publicly neck!! LOL LOL Smiling, I wouldn’t mind being kicked out at least once. That wouldn’t be the 1st that has happened either LOL. Please take care, Bill

       
  4. writetowag

    June 1, 2014 at 1:50 pm

    I am so thrilled to know your Hospice Team is truly wonderful….I hope you get kicked out of Hospice several times, especially with a smile!!!! God bless and be with you Bill…Hugs from Cara and Trev!!!!

     
    • FlaHam

      June 1, 2014 at 4:14 pm

      Cara and Trev, thank you so much for your well wishes, smiling it does seem we are all on the same sheet of music, we all want me expelled from Hospice. Take care, Bill

       
  5. Barbara Farrelly

    June 1, 2014 at 5:20 pm

    Bill, am wondering how the Hospice can treat you for infections your doctor can’t manage. Do they have different drugs? Are your usual meds no longer effective. I need more antibiotics and stronger ones to clear up infections. Thank you for giving us a guided tour. Very kind of you, and very brave. It can help to write things down. All the best, Barb

     
    • FlaHam

      June 1, 2014 at 7:40 pm

      Barbara, I am sorry if I implied that Hospice has some magic drugs available only to them, that isn’t the case. Doc Infectious will still manage my drug cocktail when I am suffering from an exacerbation or hospitalized. Hospice administration of drugs is to ensure that I have the best possible quality of life. Example Alprazolam is anxiety medication I took twice a day under Doc Lungs instruction. The drug is effective, and it makes breathing easier. But the further you advance the more often you need to take it. Because it is addictive Doc Lungs will not allow me to take more than 2 a day. Which is great if I had 10 or 15 years left in me. Hospice will allow me to take more than 2 a day, maybe as many as 6 a day if necessary, right now my dosage is 3 a day. The point is that Hospice prime goal is for me to be as comfortable as possible until I die. If I am addicted to pain pills that help me function and enjoy life I am okay with it. Clearly if this were a disease that one could recover from I wouldn’t even be in Hospice. Barb, I could go back and dig out all the various medications I have taken over the last 5 years, and the list would be quite long, and dosages have gone up, but the fact is when I am hospitalized Doc Infectious will be monitoring my response to the medications on a daily basis, shifting as necessary, but we both know that can only go on for so long. When I am stable, Hospice will make sure I am comfortable. This may not be the answer you were looking for, or if you have further questions please ask. Take care, Bill

       
      • Barbara Farrelly

        June 1, 2014 at 7:58 pm

        Doh! Of course about the Hospice drugs, thank you Bill. It’s customized care (I put the ‘z’ in for you).

        I one experienced a string of panic attacks that I now attribute to low blood/oxygen. They were awful and much as you have described as waking in fright. I even attended hospital thinking I might be going to have a heart attack!

        The nurse cheered me up by saying, ‘Don’t worry, the ones that are going to die usually don’t realize how sick they really are’!

         
        • FlaHam

          June 1, 2014 at 8:04 pm

          Barbara, Thank you for understanding for this to work I need to be understandable, and sometimes I get off track. Your questions are always welcomed. Take care, Bill

           
  6. sheridegrom - From the literary and legislative trenches.

    June 1, 2014 at 9:41 pm

    Bill – This is valuable information about your Hospice relationship including your financial/insurance relationship. I also have Fed BC/BS but I’m older than you. When you turn 65 in this wonderful country of ours, you are forced to enroll in Medicare or you lose Tricare which of course comes as part of Tom’s military career. We wouldn’t care about the Tricare but they pay the co-payment on our medications. It’s really a convoluted mess. I take it the Hospice you are with is a ‘For Profit Hospice’ or they wouldn’t be billing your insurance. I’m thrilled you have this option. I’m not thrilled you need the option but it’s nice to know it’s available should the need arise.
    I’m particularly interested in what support Hospice provides your wife. I believe the personal side of medicine is just as important as the hands on medical.
    You are providing a great service here. Sheri

     
    • FlaHam

      June 2, 2014 at 12:16 pm

      Sheri, I will be turning 65 in a few months, but I have no intention of giving up my BCBS. Medicare (Parts A and B) will be prime, and BCBS becomes secondary. Between the 2 I will have no out of pocket expenses. Even if I were stupid enough to consider changing BCBS the earliest we could do it would be when my wife reaches 65. I have a few retired Military types that are going thru the same you husband is, and to me that is just another screwing the our leaders and dropped on us. Oh well. My wife has begun to see a counselor (finally) and well be seeing the counselor weekly for a while, then they will work out a schedule that works. At some point my daughter will probably seek out counseling as well, but as you know this isn’t something you force on a person, they have to be ready. Sheri, I am truly glad you have found some benefit to my posts. Soft smile, 2 years ago when I started this is how I had hoped it would turn out. Thank you. Take care, Bill

       
      • sheridegrom - From the literary and legislative trenches.

        June 2, 2014 at 6:50 pm

        Bill – I’ve never even thought of giving up BC/BS. They are the gold standard for health insurance and always have been. I hate it that Medicare is now our primary but that doesn’t force my hand to drop BC/BS. Medicare has come close to killing me a couple of times. Once they sent me home from the hospital when I’d lost more than half of my blood in a 6 hr. surgery 2 days previously. I still haven’t made up the blood difference so I understand when you say you are tired. I know my tired is nothing compared to yours but before that episode, I could do whatever I wanted. Everything changed for me with that one episode in Oct 2012. Medicare discharged me to home when no ambulatory facility would accept me because I was too ill.
        Last year I wrote about how I started therapy and it turned into a 3 part blog. Tom was in the hospital and told me he wasn’t going to come home from the hospital until I’d gone to at least 4 therapy sessions. Therapy is an invaluable tool.

         
        • FlaHam

          June 2, 2014 at 8:42 pm

          Sheri, I will be carrying my BCBS for the duration and then some. This doesn’t bode well with me, I hate hear Medicare horror stories, and it makes me angry for those of us that have to suffer with them. Sheri, but our tired’s do compare, we are just tired for different reasons. What are you doing to supplement/replace/reconstruct the blood you lost? Are you taking vitamins, supplements, extra fluids, if I were to lose 6 units of blood, I would be zombie. More than once I have used my blog to bitch about hospital care. I could also write a weekly report on the incompetence of most of the medical billing offices that I have to deal with, and the level of monkeys they have taking care of billing. And if I get real bored my may poke fun at them. My dear, you take care, continue to build your strength. — Bill

           
          • sheridegrom - From the literary and legislative trenches.

            June 8, 2014 at 2:45 am

            Bill: I hear you loud and clear. I posted a blog titled ‘Medicare I Hate You.’ It’s been a long trip since Oct 2012. Thankfully I have an outstanding internist and we’ve worked together to bring my blood level up. I’m not there yet but 6 months ago I started making my own blood. You have the feeling like a zombie correct. I still drag myself hither and yon.

             
            • FlaHam

              June 8, 2014 at 6:00 am

              Sheri, you’re a fighter that will help you greatly. I am so glad your body is helping. Also having the right team makes all of the difference. When you have been ill for as long as you and I, plus many others, we have long forgotten what it feels like to feel truly “good.” Yet even so we continue to make the very best out of whatever is handed to us. Smiling, isn’t the human spirit a wonderful thing. Take care, Bill

               
  7. huntmode

    June 2, 2014 at 12:15 am

    Bill, I can only echo what everyone above has said: we want you kicked out of hospice = many times; and thank you for sharing your hospice experience. It is a total mystery to me, and this is helping me to understand what is up ahead. Thank you, you dear man, for going ahead of me and letting me know how deep the water is. xxoo HuntMode

     
    • FlaHam

      June 2, 2014 at 9:10 am

      Huntie, It is truly my hope that as I share my experiences that someone trailing way behind me learns, and thru this learning process is better prepared, and can better situate themselves and loved ones as they move towards end of retirement. Smiling you have known me for sometime and know I will answer any question whether it pains me or not. Please take care, and thank you so so very much for all of the support and caring you have given and shown me. Bill xoox

       
  8. benzeknees

    June 2, 2014 at 1:53 pm

    It’s nice to know you’re in good hands Bill! I’ll have to look into what they offer in the way of Hospice care here in Canada.

     
    • FlaHam

      June 2, 2014 at 5:21 pm

      Benze, That is a problem, that we will sometimes encounter. The benefits provided by each of our countries may differ. And you are always wise to make sure that your on level ground after reading my posts. Take care, Bill

       
  9. Brenda Davis Harsham

    June 3, 2014 at 9:34 pm

    I’m hoping you get kicked out of hospice! 🙂

     
    • FlaHam

      June 4, 2014 at 5:49 am

      Brenda, Smiling we are in total agreement. Take care, Bill

       
  10. DeeDee Granata

    June 8, 2014 at 7:16 am

    Thank you for this very informative post. Hugs.

     
    • FlaHam

      June 8, 2014 at 12:25 pm

      Dee, Thank you for taking the time to read it. I know you have read about 90 pct of every word I have written and sometimes I am surprised I haven’t bored you to tears. LOL LOL But having said that I can’t express how much I appreciate your loyalty and encouragement. Please take care, Bill

       
  11. Wanda

    June 11, 2014 at 5:30 pm

    Bill–I am so glad hospice is there for you and your family. I agree with other commenters–the sooner you are dismissed from hospice for being too well, the happier all of us will be :-).

    We’ve discussed before my single and short experience with hospice–when my father was dying of lung cancer–and how much I appreciated the support and insight they provided to my siblings and me. Dad entered hospice just a few weeks before he died, so I doubt he benefitted from the kind of care you describe–and perhaps the hospice he was with didn’t offer as full a range of services as yours does.

    So, if I understand your post correctly, the hospice organization you are with doesn’t charge you or your BCBS for the services they provide, right? Do you have any idea how your hospice is funded or how hospices in general are funded? Also, how is one assigned to hospice? Or do you get to choose? Are they organized by county or state, affiliated with hospitals, etc.?

    I’ve said it before, and I’ll say it again (and again and again)–you are doing a great service with this blog. Your plain-speak is probably doing more good than you can possibly imagine. I don’t have a long list of heroes, but you are definitely among them.

     
    • FlaHam

      June 12, 2014 at 1:01 am

      Wanda, Soft smile, well when I met with the Nurse yesterday, it wasn’t the “official” visit to determine if I remained eligible, but she assured me that I wasn’t going to be dismissed from the program. She when on to say don’t worry we have had folks in the program for well over a year many times. Encouraging in a left handed kinda way. Wanda, my only other experiences with Hospice are similar to yours. My dad was accepted into the program but passed away as he was moved into a Hospice bed, and Mom was in the Hospice program for only 2 weeks before she passed away. I am constantly learning more and more about the program, and what it means to me and my family. As for billing of Hospice services. To date I have been under the care and services of the Hospice facility (approximately 3 months). Hospice has billed BCBS a little over 12K for the services they have provided me. BCBS has paid every penny. Being honest that seems like a lot of money all things considered, but as it was explained to me if Hospice had billed 12k for service and BCBS only paid 6k of the billed amount Hospice would make up the remaining 6k from donations or just write it off. I am sure it is a bit more complicated than that, but the bottom line is Hospice does not come to the patient or the patient’s family for any uncollected fees. Smiling I know we’ll have opportunities to chat about it over wine and a meal or 3. LOL LOL Trust me I am still learning. Fear of the financial implications has been rushing around in my head since the age of retirement was pushed up. I am more like a cub reporter than hero, LOL, I am just reporting the facts as I live thru them. LOL LOL. Take care, Love Bill

       

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