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How I Feel The Week Ending 01/31/14….. Living with COPD

31 Jan

Hello Friday, here comes the weekend and the Super Bowl.  Watching the Super Bowl is an annual event, and I have truly enjoyed many over the years, but I would be lying if I said the commercials weren’t important to me.  So bring on the Commercials and hopefully the game won’t get in the way. 

 

That’s quite enough levity for my post today, not that I won’t sprinkle more in as I pound away on the keyboard.  Let us proceed and get the vitals out-of-the-way.  I have not been in a Doctor’s office in a couple of weeks to check my blood pressure, but I would say because I feel fine that there is no significant change to it today.  My resting heart rate today is 104, and my oxygen concentration is 95 percent again in a resting mode. My weight depending on time of day is maintaining a weight higher than I want, but is tracking downward.

 

This week I have had only one doctor appointment and that was with Doc Head.  I don’t know how one measures progress when the examination of your head and its contents are what is being measured.  Is relief a measurement? Is getting it off your chest a measurement? If you cry or smile are they measurements of progress or lack of progress?  I assume the fact that when I walk out of her office I actually feel better is the true measure.  I have asked her point-blank, if I was crazy (others have thought I was LOL) and she has told me NO, I am not crazy, so for all you doubters out there, I have got a professional opinion, so there! LOL LOL

 

Now on to the heart of the matter about how I feel this week.  I am giving the week a 2.75.  I feel just a bit off-center and have felt this way all week.  The SOB and the physical limitations that come with it has been real bad, and the cough (while somewhat productive), damn just will not subside (I do control it somewhat with meds).   I am not having any of the early signs of and exacerbation or anything I can point at directly and say “Oh, this is why,” and that is a good point. But it is the cumulative total of things going on inside me that makes me rate the week 2.75.   

 

This week’s word is; Infusion Treatments.  I have talked endlessly about my monthly IVIG treatment and have spoken countless times about the post hospitalization IV treatments that are a part of my world. But I don’t believe I have gone into any real detail.  Yes I have whined about being a difficult stick, and that the nurses have had to prod me several times each month to successfully get the needle into my arm to start the infusion.  But to actually talk about it and share the benefits I haven’t. 

 

I have chosen two “book” definitions for Infusion Therapy (which I refer to as Treatments) one from Wikipedia, and the other taken from NHIA (National Home Infusion Association).  I have included the links to both of these definitions for your further use.  Normally I cherry pick the information to a great extent, today not so much.  I do suggest you go to the sites to get further information.

Infusion Therapy (as taken from Wikipedia, the free encyclopedia)

http://en.wikipedia.org/wiki/Infusion_Therapy

In medicine, infusion therapy deals with all aspects of fluid and medication infusion, usually via the intravenous route. A special infusion pump can be used for these purposes.

Treatments — Infusion therapy involves the administration of medication through a needle or catheter. It is prescribed when a patient’s condition cannot be treated effectively by oral medications. Typically, “infusion therapy” means that a drug is administered intravenously, but the term also may refer to situations where drugs are provided through other non-oral routes, such as intramuscular injections and epidural routes (into the membranes surrounding the spinal cord).

 

Until the 1980s, patients receiving infusion therapy had to remain in an inpatient setting for the duration of their therapy. Heightened emphasis on cost-containment in health care, as well as developments in the clinical administration of the therapy, led to strategies to administer infusion therapy in alternate settings. For individuals requiring long-term therapy, inpatient care is not only expensive but also prevents the individual from resuming normal lifestyle and work activities.

Infusion Therapy as Taken from NHIA (National Home Infusion Association) http://www.nhia.org/faqs.cfm

What is infusion therapy? —Infusion therapy involves the administration of medication through a needle or catheter.  It is prescribed when a patient’s condition is so severe that it cannot be treated effectively by oral medications. Typically, “infusion therapy” means that a drug is administered intravenously, but the term also may refer to situations where drugs are provided through other non-oral routes, such as intramuscular injections and epidural routes (into the membranes surrounding the spinal cord).

 

“Traditional” prescription drug therapies commonly administered via infusion include antibiotic, antifungal, antiviral, chemotherapy, hydration, pain management and parenteral nutrition.

 

Infusion therapy is also provided to patients for treating a wide assortment of often chronic and sometimes rare diseases for which “specialty” infusion medications are effective.  While some have been available for many years, others are newer drugs and biologics.  Examples include blood factors, corticosteroids, erythropoietin, infliximab, inotropic heart medications, growth hormones, immunoglobulin, natalizumab and many others.

 

What diseases are treated with infusion therapy? — Diseases commonly requiring infusion therapy include infections that are unresponsive to oral antibiotics, cancer and cancer-related pain, dehydration, gastrointestinal diseases or disorders which prevent normal functioning of the gastrointestinal system, and more.  Other conditions treated with specialty infusion therapies may include cancers, congestive heart failure, Crohn’s Disease, hemophilia, immune deficiencies (this is the condition that I fall), multiple sclerosis, rheumatoid arthritis, and more.

By far, the major home infusion therapies are IV antibiotics, prescribed primarily for such diagnoses as cellulitis, sepsis, and osteomyelitis; other diagnoses include urinary tract infections, pneumonia, sinusitis and more.

 

What is specialty infusion therapy? — “Specialty infusion therapy” is a term in use when “specialty” infusion medications are administered.  The distinction, if any, between the meaning of “specialty infusion therapy” and “infusion therapy” is related to the context of their use.  This para can be seen in its entirety on the defined site.

 

Why are infusions performed at home? Until the 1980s, patients receiving infusion therapy had to remain in the inpatient setting for the duration of their therapy.  Heightened emphasis on cost-containment in health care, as well as developments in the clinical administration of the therapy, led to strategies to administer infusion therapy in alternate settings.  This para can be seen in its entirety on the defined site.

 

This concludes the “by the book” technical/medical aspect for the word of the week “Infusion Therapy,” and I will now proceed to give it to you as I see it.

I have been getting Infusion treatments for just at 2 years now.  My being infused on a scheduled basis came about because my Doc Lungs called in Doc Infectious to see what if anything else was going on in my body to make me so susceptible to pneumonia, MRSA and other continuing issues of the my COPD and the fact that I was being hospitalized on a very regular basis, and when I wasn’t in the hospital, I was having exacerbation on an almost regular basis.

 

Through a series of simple blood tests Doc Infectious found that my immune system had gone into semi-retirement.  My immune system was not producing sufficient antibodies in response to exposure to pathogens. As a result, my immune system fails to protect me against common bacterial and viral (and occasionally parasitic and protozoan) infections. The net result was that I got sicker quicker and longer than that of a person with a normal working immune system.  Doc Infectious said this problem (where the immune system does not work at the needed level) is not uncommon, and that it occurs usually as we age.  But it is not limited to older folks at all.  The schedule and dosage depends on the individual, and their tolerance of the medicine.

 

Doc Infectious put me on a Gammagard IVIG treatment every 4 weeks.  Originally the dosage was set at 400 units per treatment, but after several months and no significant increase in the needed antibodies, Doc Infectious increased the dosage to 500 units per treatment.  This has had the desired impact.  Recent blood tests show my antibodies to be at low normal and slowly increasing.  Doc Infectious has advised me that I may be on this treatment schedule the rest of my life, but he has also stated that the treatment itself may jump-start my body, where my body actually begins making the necessary antibodies on its own.  At which time, my dosage and schedule could change to reflect the work of my body.   

 

Now with the Mediport, the entire process is quite simple.  I walk in, sit down, have my vitals taken, then the nurse prepares the site, sticks the needle into the port, flushes the line, runs 5 mins of saline, then attaches me to the 1st of 5 bottles of Gammagard.  In infusion starts a slow rate, and with each 15 increment the speed is increased.  After 4 increases the flow is at maximum and continues until I have all 5 bottles.  I generally start at 9am and the treatment is completed around 2pm.  After all 5 bottles are infused; I get another 5 minute saline flush.  Cleaned up and sent home, total time generally 5 ½ hours. This 5 ½ hour period once a month is a small price to pay for the benefits.

 

This treatment has had a significant impact on my health, especially when the dosage was increased to 500 units a month. Prior to going on the monthly IVIG treatment schedule it would not be uncommon for me to be hospitalized 3 or 4 times a year suffering from pneumonia.  In the last 24 months I have only been hospitalized 5 times, but only twice in the last 12 months.  This represents a significant improvement.  I believe it has also significantly reduced the number of exacerbation I have suffered in the last 2 years.  I am grateful that Doc Lungs called in Doc Infectious.  Together they are a great team. 

 

Thank you for taking the time to work through this.  If you have any comments, thoughts, questions or concerns please ask.  Take care and I hope you have a great weekend.  GO BRONCO’s — Bill —

 

 

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36 responses to “How I Feel The Week Ending 01/31/14….. Living with COPD

  1. The Persecution of Mildred Dunlap

    January 31, 2014 at 5:10 pm

    I’m always sorry to read of the bad moments and hope that watching the superbowl bring up back up to that 3. And, yes to all of the above on progress with Dr. Head. It’s so great that you have someone you like, trust, and can talk to. Sending you an extra special cyber hug, my friend.

     
    • FlaHam

      January 31, 2014 at 8:12 pm

      Paulette, Thank you as always for you sweet and kind words. They truly mean so much to me. Smiling, I don’t look at 2.75 as failing, it’s just not as strong a C as 3 is. The other thing is we all have ups and downs, mine are no different than yours, I just put them out as part of a story about living with COPD. You know me well enough to realize, what I am doing is just telling others that they can live or hide, and I just choose to live. Big smile the point is every week doesn’t have to be a good week. Please take care, and have a great weekend. Bill

       
  2. Wanda

    January 31, 2014 at 5:36 pm

    Bill, you’ve said before in your “how I feel” posts that there currently isn’t a cure for COPD–but you, in your uniquely analytical way, are likely contributing to the eventual cure. Knowing you, I suspect you are pretty “frank” with your doctors about how well or unwell you are feeling, what works for you and what doesn’t, etc. I suspect your doctors have grown to respect your self-analysis and value that as part of your overall treatment plan. Beyond that, I wouldn’t be surprised to learn they share their experiences with you with their colleagues in ways that will, someday, lead to a cure.

     
    • FlaHam

      January 31, 2014 at 8:23 pm

      Wanda Smiling, it would a wonderful feather in my cap if I were to somehow, someway, help in the discovery of a cure for COPD. But I won’t hold my breath cause I can’t. But if thru my blog I manage to help a single individual, if I can touch a person, and help them in some unknown way deal with this disease a touch better, that thought is one of those that keep me going. Your kind and thoughtful words are music to me. Thank you, Bill

       
    • huntmode

      February 1, 2014 at 1:13 am

      Wanda, may it be so! Good analysis! Best ~ HuntMode

       
  3. Brenda

    January 31, 2014 at 5:37 pm

    Hmm, but is Dr. Head crazy? Perhaps you are both in the crazy car, LOL, just kidding. You certainly sound pretty sane to me. As for the infusions, the less in the hospital the better. Glad to hear that has been working. I got infusions with vitamins when I was really depleted after my second child, and my health was not great — asthma, vit d deficiencies, heart palpitations, sweats, etc. I think they helped, and I was healthier after my 3rd child and didn’t need them.

     
    • FlaHam

      January 31, 2014 at 8:29 pm

      Brenda, Doc Head is not crazy. She is the one that helps me deal, she is good people as we say back in Kentucky. Smiling, you say I sound sane now LOL, but wait LOL. Who knows what you will be thinking in a week. I truly believe that the infusion treatments have helped me significantly, not only in my battle with COPD, but all facets that deal with the body, fighting off disease. The non-productiveness of my immune system made me an open target for just about anything. I am grateful for these treatments and the overall impact on my health. I am glad you had a positive reaction to them, and that they were beneficial to you, even more glad you don’t need them any longer. It would be such a treat to be told my the doctor that I only needed treatments every other month. That would be something. But all said and done, I will be there month after month until the end. Smiling, Take care and have a great weekend. Bill

       
      • Brenda

        January 31, 2014 at 8:55 pm

        Modern medicine is miraculous, and I do appreciate it. I’m so glad they are keeping you in fine fettle. I was only joking about Doc Head. 🙂 Joking is a risky business, I guess, but it’s how I was raised. 🙂 Or it’s my nature. Or both. Cheers, Brenda

         
        • FlaHam

          January 31, 2014 at 11:05 pm

          Brenda, Smiling, I knew you were joking, that gave me the right to pull your chain a bit too. LOL. Don’t every worry about offending me, I have thick skin, and 3 brothers and a sister that all still take great joy teasing and joking with me. I appreciate you taking the time to check out and read my posts. That means a lot to me. Thank you, Please take care, Bill

           
          • Brenda

            January 31, 2014 at 11:11 pm

            Oh, good, you had me going. It’s much harder to know when someone is joking in comments than in person. 🙂 I had three siblings, too, stepbrothers, and teasing was a way of life! You also take care! Brenda

             
  4. benzeknees

    January 31, 2014 at 6:09 pm

    Absolutely not an NFL fan! Love CFL though. So I will absolutely not be watching the Super Bowl! Interesting info. about infusion. I have had a slightly lower than normal (what I consider normal anyway) week because I have had some problems with my sinuses & I have been sleeping way more than usual. I have been falling asleep at the drop of a hat this week – maybe my body is trying to repair itself. For me, sleep is one of the way I get better (even though I am an insomniac). If I can’t sleep because I’m too sick, then I feel even worse. But this week I have been sleeping & sleeping & sleeping, so I am behind in commenting & most everything else.

     
    • FlaHam

      January 31, 2014 at 8:42 pm

      Benze, Smiling, there is no accounting for taste. But I have watched a few CFL games, and if you like modified flag football that’s the game for your. Just Teasing ! I am glad you got something from the post. I do appreciate your input and insight. I am sorry you haven’t been up to speed the past week. As you know there could be anyone of a bunch of things causing it. Maybe part of the problem is that it is self-perpetuating. You nap because you don’t feel well, then you can’t sleep because you napped. That is a hell of a cycle. I normally only sleep 5 1/2 to 6 hours a night, and I rarely nap. But I have been lucky to live and survive like this. I hope you find a way to break the sleep cycle. And I hope whatever bug is nibbling on you stops. Take care, Bill

       
    • benzeknees

      February 1, 2014 at 12:50 pm

      Bill, when I said I was sleeping a lot I meant sleeping more at night as well as a couple of naps during the day. When I am feeling “fine” a nap during the day can throw off my sleep schedule because I suffer from insomnia. Whenever I have had pneumonia, all this sleeping is usually the first sign, along with some stuffiness in my head – so I am keeping a close eye on this time.

       
      • FlaHam

        February 1, 2014 at 4:43 pm

        Benze, Oh, I did miss understand, sorry about that. Then yes I think it is wise that you are putting yourself on alert for a potential issue. Take care and be safe, Bill

         
  5. huntmode

    February 1, 2014 at 1:19 am

    Bill, we just finished a long chat re acronyms, etc. – as in SOB – means Shortness of Breath…. Just will not stay put in my head. Laughter. The SOB can make any hour, any day, and for sure any week drop in rank, no matter what scoring you’re using. Glad it was a 2.75 and not lower. More glad you feel better after seeing Doc Head. Glad you’ve got a responsive team on your side, i.e., Doc Lungs and Doc Infectious. And most important, that your body has responded positively.

    Here’s a thought – maybe this team of yours was the future manifestation of your time on the Enterprise? ha!

     
    • FlaHam

      February 1, 2014 at 7:18 am

      Hunt, Yes Doc Lungs, and Doc Infectious could be the manifestation of my time on the Enterprise, but you, Wanda, Paulette, Colleen, Julie, Kate, Brenda, Benze, Clowie and so many really make of the crew, you are the ones that keep me going. Thank you all, Bill

       
  6. rebecca2000

    February 1, 2014 at 11:42 am

    Bill,
    I have strictly forbidden you from feeling this bad. Don’t you know you’re supposed to listen to me? You know I adore you and need for you to feel good and have lots of fun and adventures. Infusion therapy sounds like it stinks. I hope you have lots of hand holding during this.

    As for the Superbowl, if you lived local I’d have ya over to my party. We have the theater room full of recliners, crazy amounts of food, and cocktails. The kids are making a huge scavenger game of clue for all the children in here. We’ll have the game on downstairs too for the women to watch the commercials mid-drinking. It would be fun and I think you’d fit right in. You could hang out with either group.

    x,
    Becca

     
    • FlaHam

      February 1, 2014 at 11:51 am

      Rebecca, I am doing the very best I can to follow your instructions to the letter, I am doing everything in my power to keep from feeling bad. But sweet lady some days it really is chore. And it difficult to hold back the tide. I like holding hands, there is so much comfort in that simple action, but believe it or not the infusion treatment is so routine, and I use those 5 + hours to the fullest extent possible, and it’s not like once I get started I can be interrupted, that’s the good thing. But if your volunteering to hold hands, you would be welcomed with a open heart. If I lived local you could count on me being there from start to finish. Your description makes it sound like the party of the year, and I imagine I would fit right in. I hope you’ll have a great party and as you lift that drink to your lips give me a quick thought. Take care, Bill

       
  7. Chatter Master

    February 1, 2014 at 5:39 pm

    Ah Bill….I never like hearing there’s a dip in how you feel. I hope it turns it’s self around VERY soon.

    And just a funny side note. My boss tells me the story of when one of coworkers started working for her before I did. We had to write notes on everything we did. My boss was reading my coworkers notes, who has somewhat of a medical background. And she used the term SOB. My boss thought she was calling someone an SOB. 🙂

     
    • FlaHam

      February 2, 2014 at 7:31 am

      Colleen, It has been suggested that because I use so many acronyms that I create a glossary of terms and make it available, which I am seriously considering. In part because sometimes I make up the acronym, it just seems fair. That story btw is very good. I may steal at some point. Take care, Bill -xo

       
      • Chatter Master

        February 2, 2014 at 8:46 pm

        You are more than welcome to it Bill. 😉

        I used to have a glossary!!! Good idea!

         
  8. Clanmother

    February 2, 2014 at 1:03 am

    You have a gift for sharing knowledge that will help us understand the nature of what you are going through. Your journey is not for the faint of heart. I am glad we have connected.

     
    • FlaHam

      February 2, 2014 at 7:39 am

      Chan, Thank you so much for your very kind words. I share with you things as I see them, and I share the clinical cold hard facts. The journey anyone has who suffers a life threatening disease or worst a terminal one rough. But sometimes it is even harder on the spouse or loved one. If what I do and say lightens the burden of an individual for even a second, I feel all my words are worthwhile. As you have seen I sprinkle in a bit of humor, and bit of seriousness, as accurate information as I can find, and a touch of nonsense. Sometimes I use the mixture all in the same post, others not so. I am starting to babble, so I will stop and say from the bottom of my heart thank you for coming along on the journey. And thank you so so very much for your kind words of encouragement. Take care, Bill

       
      • Clanmother

        February 2, 2014 at 10:52 pm

        Thanks, Bill!! Welcome to a new week! Sending warm thoughts your way…

         
        • FlaHam

          February 9, 2014 at 6:19 pm

          Clan, Thank you I really appreciate the warm thoughts. take care, Bill

           
  9. livingwithshadows

    February 3, 2014 at 3:35 am

    Sorry to hear you are having an “off” week. sometimes it is so hard to pinpoint what is making us feel that bit off but i’m glad to hear you aint crazy lol! thank you for sharing that info on infusion therapy. my grandads wife has cancer which is managed by chemo pills but she also goes into hospital every 3 weeks for an infusion of something i can’t remember the name of, she doesn’t offer a ton of info and i don’t tend to ask a lot of questions, i feel quite awkward talking about the whole thing as although i’d like to know more i do not want to upset her in any way. it’s nice to know what is actually likely to happen during these appointments now.
    hoping you have a better week, all the best.

     
    • FlaHam

      February 6, 2014 at 12:49 pm

      Living, It is rough on you I know from personal experience. If you have any questions about infusion I might be able to help a little. While my treatments are not cancer related I may know some folks I could ask. I think the most important thing you can do is write your questions down for the attending nurses, generally they are good for giving generic answers that don’t voilate privacy laws. Her Doc should also be able to help, and you can approach grandpa I know it is a sensitive question but I am sure he will appreciate your concern. Please take care, and I will help as I can. Bill

       
    • FlaHam

      February 9, 2014 at 6:34 pm

      Living, It was very encouraging to find out I am not crazy, LOL, though I am sure others will still debate it. Well knowing that I will be going home in a day or so, is clearly helping my head. I am sorry about your grandad’s wife is ill. It is a difficult time for all of you I am sure. I believe I may have volunteered to answer or research what questions you may have, and I am willing to do so, but I would also suggest you talk to you grand dad, he may need someone to talk to about this. If his wife is not communicating maybe she isn’t with him either. Just a thought. Please take care, Bill

       
      • livingwithshadows

        February 15, 2014 at 4:11 am

        Thanks Bill, i appreciate the offer. you know when i examine it i think the awkwardness is mostly on my side. i do ask things but probably not enough and i’m sure she knows how worried it all makes me. they are close and he attends all appointments with her so i know they have each others back. i will have a conversation with my gradad when i feel there’s an appropriate moment. i know when it all began he reached out to my husband so i would hope he could do that again also. they both have access to my blog so i could always do something that way.

         
        • FlaHam

          February 15, 2014 at 4:20 pm

          Shelley, Soft smile, your doing the right thing, and you are remaining open to communications, that is essential. Please take care and be safe. Bill

           
  10. writetowag

    February 3, 2014 at 1:53 pm

    Shew…hospitalized 3-4 times a year for pneumonia…what a blessing you now have docs you actually trust and can talk talk to…the progress is amazing!!!! The things you go through Bill, please stay strong, we send you encouragement and love!!!! Hugs

     
    • FlaHam

      February 6, 2014 at 12:39 pm

      To wag, Thank you for your kind words, I am doing my very best to get out of the hospital soonest, and I am making great progress. While no release date has been set, I will wait patiently until word is given. Take care, Biped Bill

       
  11. jaklumen

    February 6, 2014 at 12:02 pm

    Hey Bill, my father has transverse myelitis and mononeuritis multiplex (where his immune system started attacking his nerves), and he did infusion therapy of B vitamins for a while.

    hunt and benze had mentioned the health issues you’ve been having and I wanted to stop by and offer some support.

     
    • FlaHam

      February 6, 2014 at 12:35 pm

      Jaklumen, Thank you for stopping by. Your support is greatly appreciated. Both Hunt and Benze are good friends and both kinda mother me, friends of theirs are clearly important to me! Again thank you and take care, Bill

       
      • jaklumen

        February 6, 2014 at 12:49 pm

        You’re welcome and thank you too, Bill.

         

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