BAD MEDICINE – HOW DOES IT BEGIN, WHERE DOES IT END?

Obamacare/Medical 2016/One Woman’s Opinion
By – Sheri de Grom

Dear Readers, I wrote this blog last Oct and found it sitting in my draft folder waiting for a picture or two to be added. The medication I write about in this blog had serious side effects. The medication attacked Tom’s kidneys and he’s now in stage 3 kidney failure and just as he was gaining a bit of strength in his legs, the medication zapped most of what had been gained. However, as the New Year begins, we have much to be thankful for. We were home together over the holidays and that doesn’t happen often. We cherish each and every time.

  • * * *

It’s Oct. 31, 2016 and instead of writing in my journal, I’m writing to you, my fellow

Baptist Hospital, Little Rock, AR

Baptist Hospital, Little Rock, AR

bloggers.

I’m sitting at Tom’s bedside wondering how many things can go wrong with this hospital admission and praying the tragedies will be minimal.

It doesn’t matter who I talk with in this healthcare setting.

When I ask medical staff what they believe is wrong with our healthcare today, they are ever-so-quick to reply “Obamacare.”

I always ask for additional thoughts and they look at me incredulously as if, ‘isn’t that enough?’

I agree it’s more than enough reason. Healthcare as we knew it is gone and I don’t expect it will return in our lifetime.

Once the bureaucrats made mincemeat out of our healthcare, medical providers perhaps thought they had free reign to do whatever they wanted. Doctors, nurses, researchers, etc. have their hands tied to practice real medicine. Is that when the morality of those practicing medicine broke down? Could frustration be the cause?

Not everyone fell to despair. There are those that retired or changed professions. There’s my internist I’d respected above all others who retired because he couldn’t care for his patients the way he wanted. One of Tom’s cardiologists went into research and my 2nd internist said the heck with all the paperwork and is now in charge of tele-medicine for The Veterans Administration.

Good can still be found in the medical profession the same as the princess who’s still looking for her prince. You have to kiss a lot of frogs before you find the perfect medical professional to serve on your team.

We now have another hero in our world of medical care for Tom in conjunction with Tom’s psychiatrist at the VA. Now, Tom’s pulmonologist is also our hero. He’s picked up the medical pieces as Tom’s previous infectious disease doctor dropped the ball and didn’t monitor his infection properly.

Everyone talked about the former doctor’s ego but I never thought it would get in her way of treating Tom to the best of her ability. She was not following the standard protocol for keeping an eye on the progress or lack thereof of fungal growth. Unfortunately for Tom, the medication she prescribed hadn’t helped; the fungal infection kept growing and choking off Tom’s ability to breathe and swallow.

Had she followed the standard protocol, Tom and I could have avoided a mountainous source of pain and agony. The protocol calls for once monthly x-rays and tests and she wrote Tom a prescription and said come back in a year! He could have been dead by then or the disease would have consumed his entire body considering the comorbidities he has. She didn’t have the magic bullet to fight this horrific fungal infection [histoplasmosis] and especially since Tom’s immune system is shot.

Tom’s pulmonologist graduated from the University of Damascus, Syria and followed with a fellowship and teaching post in London. I asked why he didn’t stay and practice medicine in London and he said, “I took an oath to help my patients. In England, everyone goes on a waiting list and then they die.” He further told me Tom would have been dead years ago under any other healthcare system than ours.

I have no idea what I would have done with this episode of Tom’s illness if the pulmonologist hadn’t been available. He was to leave town with his family for a month’s Mom, when does Dad get to come home?vacation but he sent them ahead of him and came in to see Tom daily and sometimes twice a day. He’s a doctor who means what he says and then sticks to it. He also doesn’t care about Tom being bipolar and he likes the idea that I read and stay current about Tom’s many medical conditions. To win me over completely, he remembers my Bailey’s name.

We now have a new infectious disease team associated with St. Vincent’s of Little Rock and Mayo Clinic plus a new endocrinologist. We’re in the process of putting together a new cardiology team for Tom.

There’s no hope any of the new doctors will make Tom well but I do have expectations that they won’t kill him and they will help us make the right treatment decisions for him.

The inadequacies of Baptist Hospital of Little Rock and its staff never cease to amaze me. Tom was a direct admit on Friday and the admission to the floor took 5 hours. The room was supposedly ready before we left the doctor’s office [15 min. away] 6 hours earlier. Direct admits are sent to the floor immediately as the basic medical information has already been transmitted to the hospital and the only thing I should have had to do was sign the paperwork giving permission to treat and agreement to pay for anything our insurance didn’t cover.

On an earlier comment someone asked why we didn’t use another hospital and I’m working toward that goal. We’re stuck with Baptist Hospital of Little Rock now because that’s where Tom’s pulmonologist makes rounds. We didn’t want a hospitalist caring for Tom as we’re in the process of building a new team of specialists.

A main requirement for the new team is that they do rounds at a hospital where we’ve had good experiences. However, I’ve heard that hospital is hurting in customer satisfaction since we were there last. What is a caregiver and a sick patient supposed to do when care becomes so advanced it can no longer be provided in the home?

Tom was in the hospital Oct. 28 – Nov. 4, 2016 receiving daily infusions of liposomal amphotericin. He’d already been on voriconazole for 8 months and his histoplasmosis was worsening the entire time.

It seems every new medication comes with its own myriad of problems. The liposomal amphotericin is an old drug and is both expensive [over $1,000 per IV bag] and toxic [Tom’s kidney’s have reached their tolerance limit].

While Tom was in the hospital the doctors ordered a daily infusion for 7 days. The horrifying reality is that the nurses hung 3 of the 7 bags but never turned them on. Tom missed those doses and the next shift to come on threw the room-temperature bag in the trash.

I can hardly wait to receive an itemized bill for this hospitalization. We saw 3 bags hung and then all 3 were thrown in the trash. Is it any surprise health care cost so much? I will be reporting this expenditure to Medicare. It’s a minimum of $3,000 wasted medication plus 3 days hospital rate of his being an in-patient. The hospital deserves to hurt on the bottom line for such negligent behavior.

I stayed at the hospital for hours on end and during 1 period it was 5 ½ hours between the time one aid came into his room and then the next one. It is inexcusable to leave any hospitalized patient alone for 5 ½ hours.

I know to stay close to my patient.

I know to stay close to my patient.

Tom’s a fall-risk and they didn’t want him getting out of bed alone. However, he’d waited 2 ½ hours one night for someone to help him to the bathroom. No one came.

Tom got up by himself and of course he fell, even using his walker, as they had cables strung across the room. As a result of the fall he has 4 broken and 2 bruised ribs, a gash over his left eye and a twisted right wrist.

At the one week mark of infusion therapy the doctors decided Tom could have the remainder of his infusions at home and a Home IV Specialist Service would deliver the supplies.

If I only relay one message in this blog post, it is this:

TELL THE SOCIAL WORKER NO

         The social worker told me I would have to give the IV Therapy to Tom myself and they would teach me how. I immediately told her, “NO YOU WON’T!”

She insisted it would be no problem because Tom already had an internal jugular central venous catheter placement with 3 lumens. She continued, “We’re sending you home with an Anaphylaxis Kit so you have nothing to worry about.”

“No, No and No. What part of No don’t you understand? Are you telling me that Tom could go into anaphylactic shock when he’s getting this infusion?”

“Yes, it happens during the first 15 minutes of treatment if it’s going to happen.”

I’d had enough. “Go review our insurance policies and figure out where Tom will receive this necessary medical infusion and who will administer it. IT’S NOT GOING TO BE ME.”

Remember, the doctor had written the care plan for Tom and it included at-home infusion therapy. The orders did not say who or how it was going to happen.

You have the right to say no. The medical order has been written and “they” cannot leave the patient untreated. Trust me, they’ll think of something, they have no other choice.

You have a choice, they don’t. Use Your Voice.

All last week, 7 days, Tom received his treatments here at home. It wasn’t all smooth sailing but once the problems of who/what/when were worked out, there were no problems.

Imagine being responsible for medicating the love of your life and knowing you faced the possibility he’d die in 15 minutes. That wasn’t something I was willing to sign on for and I don’t want you to think you might have to do it either.

I’m learning a lot on this journey with Tom [although I would have been willing to learn the information and pass it along without involving Tom and all the stress and agony that comes with it]. I’m current with most of the Federal Registers governing what someone can and cannot make me do and I’m sticking to the few battles we’ve won in this medical care nightmare.

In my opinion, we’re going to see a lot of change in the coming months.

I thank each of you for reading with me. I always appreciate your time.

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About Sheri de Grom

Retired Fed/JAG, 5 yrs. on Capitol Hill. Former book buyer for B and N. Concerned citizen of military drawdown. Currently involved in mental healthcare reform, health care strategist and actively pursuing legislative change wherein dual retirees are exempt from enrolling in Medicare at their own discretion without losing tertiary healthcare benefits. Monitor and comment on Federal Register proposed legislation involving Mental Health, Veterans Affairs, Health and Human Services, Medicare and rural libraries. Licensed OSHA Inspector to include Super Fund sites. Full time caregive to Vietnam era veteran. Conceptualized, investigated possible alternatives, authored, lobbied for, and successfully implemented Title X, Section 1095 (known as the Third Party Collection Program of Federal Insurance).
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68 Responses to BAD MEDICINE – HOW DOES IT BEGIN, WHERE DOES IT END?

  1. Sheri, Tom is blessed to have such a loving, intelligent, and assertive woman at his side. Thank you for warning and educating us about saying no when we sense we’re being asked to do something a medical professional should be doing.
    Blessings to you both ~ Wendy

  2. Sorry Sheri, for being so late in responding to this Post, I’m very behind in my Blogging with having encountered some serious problems to overcome.

    It always amazes me Sheri, even though you have so much to contend with in caring for Tom your inner strength is always very noticeable and your focus is always for good. Yes Tom is your priority and yet you care that others are warned when needed and also you offer helpful advice, some would have just consented to give the IV Therapy and so put themselves in danger now with being warned they won’t, which is very good.

    I’m also going through a Storm Sheri at this time, I’m internally bleeding, they are not sure yet what is causing it although there is a risk of Bowel Cancer, which my Dad died of. I did Post about it asking for Prayer and yes I would value yours too but I have remained calm and feel at Peace, which I give thanks to God for.

    Christian Love Always – Anne,

    • Oh, Anne. My dear special friend. I’m also slow in responding and reading and of course you are always on my prayer list but my dear friend, know you are moving to the top of my ‘Super Power Prayer List.’ I know, being the strong Christian you are, you will meet whatever God brings your way, but we will pray and ask for God’s grace. He knows what a strong ambassador you are for him and he needs all of the knowledgable Christians on this great earth of his to battle the devil each and every day.
      My heart hurts for you, Anne but it hurts for me, too. Have they performed a colonoscopy [not a pleasant procedure] but that would give a lot of informtion about bowel happenings. I’m not sure what your insurance allows. Part of the preventive medicine in the US is that each individual has the procedure every 5 years as an early detection as it’s one of the easiest cancer’s to treat if caught early enough.
      Anne, know I hold you in the cradel of my arms and pray to our Lord that you have relief from any pain and the bleeding stop immediately. We can’t ask for a slow down. I also ask, in Jesus Name, that the doctors determine the cause and put into place a permanent fix to the problem. You are only 10 years older than I am and I know that we have procedure to prolongue life without pain if a patient does have bowel cancer – if that is what the patient wants.
      Anne – Know I hold you up to My Lord in prayers requesting healing, ease of suffering, peace of mind and thanking him for placing such a strong Christian Warrior on this earth for all of us to emmulate to the best of our ability. With love, Your American Christian friend, Sheri

      • Thank you Sheri for your faithfulness in Praying for those in need, I very much appreciate your Prayer support and thanks also for your kind words giving me encouragement in being a person of worth in Christ Jesus.

        The good news is Sheri that God did not did not bring this suffering to me, He does not afflict us or willingly allow us to be afflicted, Life Happens including sickness, suffering, accidents and hardship etc but God does get us through it.

        Lamentations 3: 33 For God doth not afflict willingly nor grieve the Children of Men.

        It’s the same in Australia as you shared Sheri about America, I have been having Colonoscopies since I was 50 because of Dad dying of Bowel Cancer and I’m due in a few months but they have already booked it to be done during the next two weeks because of my Internal bleeding and yes they are not a pleasant experience.

        I never rejoice for what causes me to suffer but I do rejoice and give Thanks that God is with me through whatever I go through good and bad as confirmed in the Scriptures below.

        Isaiah 43:1-3 – Do not be afraid for I have ransomed you I have called you by name you are mine. When you go through deep waters and great trouble I will be with you. When you go through rivers of difficulty you will not drown! When you walk through the fire of oppression you will not be burned up the flames will not consume you. For I am the LORD, your God, the Holy One of Israel, your Saviour.”

        Jeremiah 29 :11-12 For I know the thoughts that I think toward you, says the LORD, thoughts of Peace and not of evil, to give you a Future and a Hope.

        Thanks again Christian Love Always- Anne.

  3. reocochran says:

    My daughter, son and brother are covered by the old insurance program that is called Affordable Care Act. It is now being dismantled and there will be months with NO medical insurance for the 700,000 people in Ohio (alone) who are on this program. Instead of blaming the ones who tried diligently to create this insurance for all people, they will make them once again scramble to find somewhere, somehow coverage. John Kasich, Ohio Republican leader says many millions across the country won’t Once Again have insurance. Hope none of your family members have to deal with NO insurance from their small business employers. Much, much worse than having an affordable and useful service that prejudiced (bigoted) people blame the program when costs and the economy was improving after Bush left. . . If you don’t print this, I don’t mind at all. You’ll hear this from someone in your personal life. After all, Karma works both ways.

    • I won’t argue on WordPress. In previous blogs I’ve talked about the decisions I believed I had to make for my family to have the insurance coverage we have now. The sacrifices hurt and we still pay $900/mo for our coverage. No, we don’t get subsidies to pay, it all comes out of our monthly income and trust me, there’re many other places we need that money. Like everyone else, we need the insurance more than ‘all the other places’ and therefore do without.
      Instead of having ‘Affordable Health Care’ [which isn’t affordable at all] why not have Medicare for those who don’t have access to health insurance. An equitable amount could be charged for each citizen needing the insurance and for those of us that don’t need it, leave us alone and allow us to carry the insurance we’ve had all along.
      Frankly, I’m tired of any program that’s a subsidy. I want equality for all and as long as we are subsidizing big business, we’ll always have a trickle down approach to subsidizing everyone else.

  4. Nathan says:

    Very insightful post. I hope I can one day be a physician patients can trust to respond carefully and promptly to concerns.

    • Nathan – Thank you for stopping by to read with me and to comment. We do have those good physicians out there, it’s a long and difficult hunt to find them, but when we do, I believe there’s real hope.

  5. amras888 says:

    It saddens me so deeply to read these lines. I am, however, somewhat encouraged by the sheer resilience displayed by yourself, and Tom. The prayers of many are surely with you both.

    • Thank you so much, kind friend. I refuse to give up and have a glimmer of hope with 2 of the new doctors on Tom’s care team. I called one with a deep concern before the weekend and he made a space for Tom yesterday on his already overbooked calendar. It strengthens my resolve, as well as Toms, when a physician responds promptly to our concerns.
      I so appreciate your reading with me and taking the time to comment. Prayers to you my friend for your health and happiness in the New Year.

  6. Sheri…..I continue to be dumbfounded by how we got to this point. My husband had surgery. I had to go get his prescriptions (there’s a point to this story). The first pharmacy took the orders, and the insurance, and I went to the parking lot to wait. Having left my husband home alone, just hours after his surgery. When I went to get the meds they said they don’t “use” our insurance. I was dumbfounded. Had to go to ANOTHER pharmacy, made them check first to see that they used the insurance, yes they did. Finally got to pick up the medications, the pharmacist said insurance did not cover one of the meds. I asked why. He didn’t know.

    I looked at the young man (which did NOT make me feel any better) and said “you know what? There was a time when our doctors got to order medications and the insurance paid for it because one, we paid for insurance for that reason, but two, the DOCTOR decided what medication their patient needed, not the insurance.”

    He looked at me, raised his eyebrows and said “really????”

    I told him yes, but he is too young to know of such things.

    I’m not THAT old. And the idea of the doctor deciding what the patient needs, should NOT be a historical marvel.

    • Indeed, it is a disgrace and I wish with all my might that we didn’t have to play these games between what our doctors want us to have and what the middle man for our insurance company negotiated when it comes to our prescriptions. This middle-man knows nothing about medicine as he’s a bean counter and we all know beans don’t have common sense or emotion.
      One of the reasons I use independent pharmacies is because they know me as a person and take the time to know who I am and what my insurance covers and what it doesn’t. This is something the big box stores will never do. Tom and I are fortunate with our insurance but I’m approaching 2017 with caution. [I haven’t had our prescriptions filled this month and I expect we’ll have a co-pay on some that we didn’t have before].
      Hang in – medicine, as you know is more than a bumpy ride.

  7. Sheri, I’m so glad that you got to spend that time together at home over the holidays. The battle for you is ongoing unfortunately, but I can understand that cherishing of those moments.

    • Andrea, Thank you for stopping by and Happy New Year to you. Yes, spending the holidays at home was wonderful and every moment is one to cherish. I do hope all is going well for you.

  8. Difficult to say ‘like’ to this. In a small way I understand what you are going through. Rod was very ill before Christmas with what has turned out to be a complication of his CLL. Nobody seemed able to make a diagnosis – we just went from one Doctor to another, until he was finally referred to a dermatologist and a haematologist. We were just about going spare by then… But now, finally, a diagnosis, and finally some improvement. Some of the drugs he’s on are pretty drastic but seem to be working. Seems to me health care is becoming a low priority for our Governments. I sure hope that 2017 is somewhat better for you and Tom. If you weren’t going in to bat for him it sounds like he wouldn’t have made it through Christmas.

  9. Alexa says:

    I’m so glad you at least got to be home together for the holidays!! We just continue to pray and hope for a better year.

    • Alexa – Yes, I have hope for 2017, 2016 was such a hard year for so many people. I’m ready to put it behind me and move on. I hope your New Year is off to a great start.

      • Alexa says:

        Thanks Sheri, yes, I’m ready to leave 2016 behind as well.. not a very good year for me and I’m striving to stay positive as we move into a new year and season. Hugs, Alexa

  10. Hello, Kirt – Thanks for stopping by to read with me. Our healthcare is in a real mess and I have no idea if we are capable of fixing it or not. It’s going to take a lot of burning of the midnight oil to rectify much of what’s been broken in the past.
    Here’s wishing you and yours a happy new year.

  11. GP Cox says:

    I’m hopeful about the coming changes. I know Washington doesn’t move all that quickly on anything except their own pay increases, but I’ll wait and see!!
    All my best to take and take care, Sheri!

    • G.P.-I’m in the mood to get things moving in DC. It’s been too long, in my opinion, since we’ve had positive change. I hope to start making some suggestions towards administrative legislative change in medical care in the next 2-3 months. At least I can try. Happy New Year to you and yours.

      • GP Cox says:

        Knowing you, Sheri – you won’t quit till you get results!!
        I hope the vets are reading today’s post. I finally sent out another ‘Shout Out’ to them.

        • Thank you, G.P. I plan to go to the VA today with a new group of volunteer wives from the Little Rock Air Force Base. We will have your blog on the big auditorium screen and all of the vets are invited to attend. The coordinator told me she expected a full house. The scouts are serving hot cider and free scout cookies afterward.
          The scouts are paring off with veterans that want a buddy and I’m so excited about this project. If the Veteran wants something or needs something, the scout will be able to get it for the Veteran and return it to the Veteran within a 10-day window. Most of our Veterans don’t have family and this is a further out-reach program. Yesterday, I met with the mother of a scout while I was in town with Tom and she was bubbling over with enthusiasm. They want to invite their Veteran into their home for some family activities so am trying to put that in place and we’ll run a pilot program. That way, if the Veteran is well enough to attend Scout ceremonies, school plays, attend church, and other activities, he could do so with the family.

          • GP Cox says:

            Oh Sheri, this is OUTSTANDING news!! I’m thrillled about this program and just how much it will mean to both generations.
            Last Sunday I spotted a veteran having breakfast alone at MacDonalds and went over to say thank you and ask if I could shake his hand. He asked why. I replied his service. His eyes filled up and voice cracked and said, how much he appreciated me approaching him. I have to admit I got quite the lump in my throat myself!!
            They all mean the world to me!! Thank you for sending this news!!

            • I’ve often wished we weren’t all in such a hurry. If we made time just once a week or once a month or even once a year to sit and talk with a veteran, I guarantee you; the veteran will still be talking about the interchange as many years as he’s alive. They have so little one-on-one communication.

              • GP Cox says:

                We all need to make more of an effort, there isn’t much time left.

                • You are right. We don’t have much time left. This isn’t about the WWII Vets but when the Vietnam Veterans came home, the Golden Corral Restaurant was one of the few restaurants where they were weldome. When Tom is able, we try to eat there once a week and look for a veteran dining alone to share our meal with, if the veteran would like company. I’ve learned they have the best salad and cleanest salad bar in town. The food is inexpensive and the service is good. It’s not top-notch but hey, Veterans can ocassionally afford to go there and by dining there once a week, I feel we are giving back a little and it’s a way to help a Veteran should we find one that needs a little conversation. It doesn’t take extra time as we are eating dinner anyway and it’s a good way for me to find out what’s lacking in that Veteran’s program.

                  • GP Cox says:

                    Great idea, Sheri. Jeez, you’re always giving me credit – when it’s you with all the brilliant new ideas!!
                    Give my best to Tom and You – Take Care.

                    • You deserve the credit. Without your fantastic blog, none of this would be happening. Every event at the VA is a result of your blog. Every program, every interaction, every smile, every hug, every letter written home and on and on. The volunteers associated with “Helping Hands,” is a direct result of your blog. Yours is the gift that keeps on giving. Hopefully it will outlive us both!

                    • GP Cox says:

                      You and me both, Sheri. I’ve been wondering what happens when I finish writing in it? Does it stay on the internet or does wordpress weed them out?
                      Being as I’m the final person alive in my family, I’ve made arrangements with the National WWII Museum in New Orleans to take what I’ve collected , relics, etc from Dad and things contributed to me while all this has been going on, but what about the website itself?

                    • It must be preserved. The information is not only a great research tool but can be used the same way we are using it for the Veterans for generations to come. Will the Museum in New Orleans archive your posts? If they won’t do it, how about a university or even someplace within the military system. I can’t stand the idea of your information being lost.
                      I also know what you mean about being the last one in your family. Let me know what you learn from the museum. BTW, something is going on with my e-mail and I physically have to go to our ‘carrier’ tomorrow. For whatever reason, when I open e-mail, each and every time, it wants to dump a minimum of 300,000 messages in my box. It does that with every ‘name’ I have. I’m sitting on well over 700,000 at the present time.

                    • GP Cox says:

                      OMG, That is outrageous!! You’re too busy a person to have something like that going on. Technology is fantastic, but when it goes wrong – WOW!!

                    • GP Cox says:

                      When I email the museum, do I have your permission to mention your name in reference to Helping Hands or should I mention the LR hospital?

        • I wrote you a long reply about a new program. It didn’t post. I’ll either rewrite it here or send it in an e-mail. Know your blog is being shown in the auditorium at the VA tonight and a lot of good things are happening. I’ll give you the details if my other reply doesn’t reappear.

  12. Gallivanta says:

    Do hope 2017 is off to a better start for you and Tom. We don’t have the same medical systems as you do, but, whatever the system is, you have reminded me that it is important to speak out, and to be clear about what is right for the patient.

    • How nice to see you again. Thank you for stopping in to read with me and taking the time to leave a comment. I was not going to give in when it came to giving Tom such powerful IV medications at home. I learned Home Health Nurses aren’t licensed to administer the medication and that was enough for me. It scares me when I think how many people are pushed into doing medical procedures in the home for which they are not qualified and it’s all in the name of saving money for an insurance company. I simply refuse to buy into that.

  13. Thanks for keeping us posted, Sheri, even in retrospect. Woe betide any patient who does not have an advocate!!

    • Jack – How nice to see you here and thank you for leaving a comment. You are so right about having to have a bedside advocate and I might add it is a full-time job. I think I remember a time long ago when medical care wasn’t a daily push and pull but most days that seems far, far away.
      I hope your painting is going well and that The New Year treats you keen. Sheri

  14. ksbeth says:

    i am always overwhelmed by how unbelievable tragic and inhumane these practices really are. thank you for always shining the light on what is really going on and for always advocating for others. you inspire me to be active in working to make needed changes happen.

    • Beth – Thank you for stopping to read and as always, for leaving a comment. This is the year I plan to get back into advocacy on a stronger basis for all medicine and not just mental health. I plan to fight for Medicare and reasonable pharmacy rates. I know that’s one big rock to roll uphill but I have to start somewhere. Our medical care is not good for anyone at the moment. We do have some dedicated doctors who work practically around the clock to make things happen and then others that would just as soon sit with their feet up. But, the problems go much deeper than the doctors.
      I want to do some other blogs for a bit of time just to clear my head out and then I’ll start on the new project.

  15. Lord have mercy . It just keeps going from bad to worse. The hospitals in your general area are bad. I’ve been on both ends and I must say that Tom’s hospital stays are ghastly. I can’t think of a better word. My son’s treatment in ICU was just about impeccable. After ICU and in the general hospital it was not so hot. My own stay, 2 1/2 years ago for 4 days was a good one. But one never knows how things will be until one is actually there as a patient or family.

    Histo is bad and the ampho B is used in cats and dogs as well. I’ve had two cats with histo and I gave then Itraconazole orally. Histo is a mean booger to get rid of. Tom and you have been in the valley of hell but I see an angel in Bailey. He is adorable and therapeutic.

    Hugs to you,
    Yvonne

    • Yvonne – I hoped you’d like the pictures of Bailey. Tom and I are both so attached to him. We’ve now had him just a bit over a year and can’t imagine not having him in our life. He brings us smiles and laughter and pure joy from the heart.
      I’ve looked and looked for real research regarding histo and have found only surface info. Because of the way Tom is going downhill, I fear he isn’t getting the most out of his medications. We have an appointment with his infectious disease doctor today. Tom has no energy and his breathing is so labored. Over the past 3 days he’s fallen, the kinds of falls you have that lead to breaking bones. I know the histo is the main disease we are fighting at the present time. He labors for every breath he gets and breaks my heart. I’m anxious to see what the infectious disease doctor has to say today. I’ve also gotten him into the University Medical School as a patient and we’ll be able to start using that hospital beginning in Feb and it’s a first-rate hospital from everything I’ve been told.

      • I gave my cats Itracoonazole. Tom’s other meds might have kept the anti-fungal med from working properly. I now have forgotten if the ampho B. had to be stopped because he could not tolerate it. Ampho B is quite powerful and must be given a certain way. The patient should be hooked to an IV that is running prior to beginning the treatment. I pray to God that you will be seen by a doctor that knows about histo and how to best treat it. Time is of the essence and February is too long to wait for appointment at the university, if Tom is struggling to breathe.

        • I was able to get Tom an appointment with his new infectious disease doctor yesterday. Tom has absolutely no energy and is falling frequently. He has so many comorbidities that it’s difficult to tell which disease is causing the most serious symptomology. He tries so hard it breaks my heart but we both have faith in the doctor we saw yesterday. We do now know the medication is finally getting into his blood stream and that’s a positive first step. The infectious disease doctor and his team plus the pulmonary doctor are real keepers. I’ve fired his heart doctor and his neurologist. We also must find a nephrologist as he has entered stage 3 of kidney disease. His heart doctor is the one that allowed his pacemaker to die in his chest last year and if he hadn’t fallen and broken his arm, we would never have known it was dead. Bailey literally saved his life.

          • Sheri, I must do a pacemaker check every three months. Is that something that was not being done? I am about 3 months past doing my own check. But this is the first time that I have been delinquent.

            It is so disturbing to me to read about so much incompetence among the doctors that you and Tom had entrusted to his care. It is one pathetic saga after another. I hope and pray that from now on everything will continue to improve with Tom’s health.

            Take care my friend. I’m sending good karma to Tom and to you.

            All the best,
            Yvonne

            • Yvonne – Tom’s pacemaker was to have been being checked by a wi-fi connection here at home and transmitting daily to the clinic. However, the clinic never bothered to tell us that for some unknown reason, they weren’t receiving transmissions from Tom’s pacemaker. If I hadn’t called his doctor when I did, Tom would be dead. Tom’s former doctor had him come into the office every 3 months for a check. I now have an appointment for Tom at the medical school and from there we hope to pick up 4 more new replacement doctors and his heart doctor is one of them. We saw his histoplasmosis doctor yesterday and he’ll have a scan Feb 2. Thanks for your love and concern. Sending you our love, prayers and thoughts for a happier and easier new year for us all.

              • I will forewarn you about the pacemaker. I always call in to St. Jude and talk to a tech to ensure that the transmission is going through. No one told me to do that and in fact the cardio techs at cardio clinic where I have been going have discouraged me from doing that. They say it’s a “piece of cake” to send it in. Well, I know very well how things go and don’t trust much to any tech or for that matter MD either. In ya’lls case I don’t think the blame is on the MD. The techs are the ones that have the records and receive the transmissions. They know when a check is due and if they don’t get the transmission by a certain due date I get called. I’ve learned not to take anything for granted. Good luck with the new team and I hope Tom’s breathing will soon be eased once the med is in his system at a therapeutic level.

                • Hi, Yvonne. I always trust your input. Tom’s old pacemaker was a St. Jude. A previous cardiologist technician called the house once a month and did a telephone check. Then we went to her office for a check, every 3 months. Unfortunately, she retired. The new doc didn’t set us a monitoring program although I asked him repeatedly how Tom’s pacemaker was being monitored. He had a cavilier approach about the whole thing and said he would keep an eye on it from the office. Obviously, the eye didn’t work out so well. The pacemaker Tom has now is from Boston Scientific. I’ve called the doctor 7 times since it was implanted last Feb 3 only to be told it would be tested when Tom has an appointment in March. The devise has not been checked since Mar [1 month after placement]. The good news is that I now have an appointment for Tom at UAMS [University Arkansas Medical School) for this coming Monday for a new internist. I’ve worked hard to get him into the University system. We’ll be asking for a new cardiologist, new neurologist and nephrologist. He’s Stage 3 kidney function at the present time.
                  You are right, we cannot take anything right. I’m so glad I finally got us both in with the University for our internist. My internist retired and I really liked him but I like my new guy. Hope Tom’s turns out as good. At least I have hope.
                  How are you? Have you been able to get a bit of your stress settled out of your life. Know you’re in my prayers and thoughts. Being a caregiver like you are to your sis and son takes so much out of a person. I do hope you are allowing yourself some days to spend with your furry friends. Know that I love and respect you. Bailey also sends puppy-dog hugs and kisses. With deep affection – Sheri

  16. My 18-month old son had series surgery to remove a tumor from his throat. The wide-open hole in his neck had to be swabbed out daily and he had to be fed with a stomach tube. And yes, they sent me home with instructions on how to do all that. I still remember his awful awful throat wound.

    • Jacqui, Sometimes I think medicine is practiced in the dark ages. My heart aches for you as a young mother and her tiny son having to go through such an ordeal. I know you are tough just like I am but there are some things we shouldn’t have to deal with. There are so many things that can go wrong and one misstep can cause a catastrophe. My hat is off to you and I know you did a superior job but the very idea that you were put through this positively breaks my heart. My heart goes out to you and all of us that shouldn’t have to do some of the things medicine asks us to do in the name of cutting costs for the insurance companies and medical conglomerates maximizing their almighty dollar.

  17. Yeah, I’m shaking my head along with Kirt D Tisdale. The IV bag going into the garbage is a debacle in and of itself, without adding all the rest of the bad stuff that has happened to Tom. Good God! Thank goodness you know as much as you do now but the way you learned has been horrific. Poor Tom. I’m glad you were able to have some time home together.

    • Patti – Hello, my west coast friend. We’re having a balmy and breezy West Coast kind of day but am sure it won’t last long. As always, I appreciate your reading with me and always leaving a comment. You cannot imagine my fury when I saw the IV bags being tossed into the trash, one after the other. Sure enough, the hospital reported they had given the medication had been given to Tom and I advised Medicare the medication ended up in the trash. It’s unbelievable to me what goes on in a huge metropolitan hospital. They didn’t have 4 of Tom’s medications and I had to bring them from home and then the bandages he needed for his psoriatic arthritis, well they didn’t have the materials in their central supply. How can that be? I went to the local Kroger Super Market to procure the bandages during the time he would have to be in the hospital and then the hospital tried to charge us for them!
      On the bright side of things, Two of Tom’s doctors are really on top of the game and we have hope and that makes my heart sing. Happy New Year Patty.

  18. Wow, Sheri, I wish you could’ve learned this in a book instead of through experience — but I’m VERY grateful you’re sharing what you’ve learned! Anytime I hear of someone going into the hospital I’ll alert them “you have the right to say NO to self-care at home.”

    • Hi, Laurie: How nice to see you here. What a nice surprise and thank you for taking the time to leave a comment. There’s a trick about Home Health and Home Infusion. The Doctor MUST ORDER THE INFUSION FIRST. The conversation normally goes something like this, “I’m going to admit you to the hospital for 14 days [more or less] for infusion therapy. The docs do this to see if you can tolerate the infusion therapy and all that goes with having a port placed and that type of thing.
      On the 7th day, the doctor decided it would be okay to discharge Tom to home but there would need to be someone to provide the supplies on a regular basis and they have to be temperature controlled in sterile conditions. An agency agreed to do this. Then the agency that agreed to do this involved a Home Health Organization to administer the infusion at home.
      Before Tom left the hospital, I was approached by the Infusion company about learning how to give the infusion treatment to Tom and that’s where I stopped the breaks. Tom was so weak, he couldn’t hold his head up or walk. How was I supposed to make this happen? It was also a 4-6 hr process each day. I stood my ground and said, “No, I’m not going to do this. It was about 4 hours of intense back and forth of arguing with them before I finally walked away from them and before they got it that I wasn’t going to do it.
      When I found out the Home Health Nurses aren’t even allowed to give this particular infusion is when I really came unhinged. If they aren’t trained, what make them think I could do a better job? It all finally worked out but it really was one of the hardest battles I’d had to fight on my own behalf and of course on behalf of Tom as well. Tom was near death and then they expected me to give him an IV that could kill him within 15 minutes of the infusion. This was a too much drama for me.

  19. I just shake my head with your posts…very informative for sure…very sad statement on our society…if only the legislators who voted for all of this had to be part of this….thanks for keeping up us educated Sheri…best to you and Tom!!

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