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House on hold – David needs work done now

2014-05-10 15.12.30Life has been difficult. That is such a simple sentence but what is going on is far from simple. David has been off work since Christmas. His back hurt and he just did not feel well. After repeated doctor’s visits he was referred to ortho. They advised him to get his shoulder reworked. He was bone on bone and it had been really bothering him for a long time.

Shoulder Surgery

Now it is early March. Dave had an uneventful recovery from the surgery. He healed well and went to physical therapy. In May or June, his shoulder was OK, but the back pain came back. His doctor ordered antibiotics. Dave got better. Several weeks later, all the symptoms come back but even more intense. More tests.

Diverticulitis

He is diagnosed with diverticulitis. We knew he had the pockets in his colon and the blood tests are showing infection. They do a CT and they “see” the infection. We talk to a surgeon who tells us that this will not get better on his own even with a controlled diet and a section of his colon needed to be removed. He needs a colonoscopy first but we can’t do that until the antibiotics clear the infection and his colon gets stronger. We wait a month.

Shivering So Hard It Hurts

During that month he is getting fevers and intense shivering which I’ve since learned is called rigors. In a blink of an eye he would go from feeling fine to shivering so hard he actually pulled some muscles. His whole body went hard and it affected his breathing. I was sweating as I piled the wool blankets on Dave.

Nothing Routine About the Routine Cardiac Visit

He is now due for his routine cardiac checkup. I was not at this doctor visit, but Dave told me that the Doctor turned white when he described the symptoms. He was quite concerned and immediately ordered blood cultures and a follow up just a few days later and a TEE (you swallow a camera and they get an ultrasound of the heart). I was able to go with him for the follow up appointment. The results of the blood cultures were also in. We were advised to go home immediately and pack a bag to check into the hospital. His TEE was already scheduled for the next day and they could coordinate his care better at the hospital. He now needed an Immunologist.

The Infection

The TEE confirmed the worst case scenario. The wires leading from Dave’s defibrillator to his heart had become infected. We were told by nurses and doctors that Dave had the classic symptoms of an infection in his heart:

  • The symptoms came and went
  • Low grade fever
  • Rigors
  • Weight loss
  • Night sweats

The device needed to be removed but he had gotten a dose of blood thinner in the hospital. The surgery is dangerous enough without that complication, so the surgeon advised waiting.

A New Drug

About that time we learned that his bug was not MRSA and a penicillin based drug could kill it. MRSA can’t be killed, only suppressed. They stopped the Vancomycin which is used for MRSA and started Nafcillin.

Quickest Hospital Discharge Ever

Since that was the first dose, it had to be administered in the hospital, but Dave could go home and wait the week out at home. It was amazing how the plan came together in just a few hours. The medicine could be available at 3:00, making his next dose due at 7:00. While it dripped through his IV they finalized the discharge paperwork. He was signing papers, someone was typing his blood, we packed up his room and about the time everything was done, Radiology showed up to whisk him away for his pre-surgery chest x-rays. I got the car while the x-rays were getting done and Radiology delivered him to the curb.

At Home

We had about a 40-45 minute drive. The pharmacy called to coordinate a time for delivery. We got home, the delivery happened about 20 minutes later. The nurse called to verify that the drugs had been delivered and came right over. The new IV was pumping at 7:15, only 15 minutes after the goal time. The pump in his backpack would take over and deliver the correct dose every 4 hours around the clock.

The Plan

I watched the nurse hook up his IV the first day. I did the hook up on the second day with prompting from the nurse and today I’ll do it while the nurse watches. Eventually I’ll be changing his IV every 24 hours on my own for at least 8 weeks.

Friday morning he’ll have surgery to remove the defibrillator.

Thank You

If you got this far, thank you for reading. Writing this out has helped me a lot. I’ll do another post after the surgery. Writing it out like this is easier than telling the story over and over to family and friends.

If you know someone with a defibrillator. . .

and they have these symptoms:

  • The symptoms came and went
  • Low grade fever
  • Rigors – VERY intense shivering that comes on quick
  • Weight loss
  • Night sweats

Ask the doctor to rule out an infection of the wires. From the bit of reading I’ve been doing on the internet, infections like this are becoming more common.

Comments

  1. sondra Ives says:

    Cindy, I read on Facebook about Dave and have read this with interest. My husband has had a defibrillator since 2011. This is the first time I have heard of an infection of the wires. So scary. This will remain the back of my mind in the event he shows any of the above signs. I will keep Dave and you in my prayers. I have cared for my husband through a stent, kidney cancer, esophageal hernia repair, the defibrillator and a hip replace due to a broken femur. Each time life stops until he is better. So I understand how this is affecting your life. Take care of yourself, resting when you can. Do keep us posted on Dave. I will be thinking of you two all the time.

    • Sondra, I wrote the post because we were not aware of the dangers either. If I had seen a post like this we would not have trusted the doctors as much and I would have pushed harder. The symptoms just come and go so when you feel better you don’t go to the doctor. Time drags on while the patient gets sicker. Luckly, he did not get to the point of collapsing. The routine cardio appointment probably saved his life.

      • Cindi u was shocked to read your post. I think you educating people about this will help others . John and I will pray and keep you in our thoughts . We love you both and if you need to take some time for you I will come sit with David. Take care !

  2. Oh my goodness Cindi. You have both been through so much. I want you to know that you are both in my thoughts and prayers. Hope Dave’s surgery goes well and he is able to end this journey with wellness.

    Cindy

  3. Thanks so much for posting the information. Hope all goes well. Thinking of you….

  4. Deb Fezzuoglio says:

    Dear Cindi,
    You and your husband are in my prayers! It’s frightening to think about a physician missing diagnosis like that. I had a colon resection because of repeated bouts of diverticulitis. Key word there is repeated. Surgical intervention due to diverticulitis isn’t typically discussed until multiple bouts have occurred.

    I’ll be checking in to see how things are progressing. Its exhausting to have to tell the sequence of events to each person. So grateful for this form of communication along with Facebook. Take care of yourself during all of this. You’re a wonderful caregiver and wonderful caregivers need a break every once in a while.

    Sending prayers and hugs!

    • Deb Fezzuoglio says:

      (I have no one in our family with a defibrillator but will never forget the symptoms you listed and your husband experienced. I never knew the hidden dangers there)

  5. Rita Thomas says:

    Cindi, You and Dave remain in my prayers. Thanks for the update. If there is anything I can do to help, please don’t hesitate to ask. Rita

  6. Betty Nye says:

    Cindy, thank you for keeping us all posted. You and Dave have really been
    through so much these past couple of years. So relieved that Dave has such
    a wonderful nurturing wife and he will get the best care possible with you
    at his side. Take care of yourself.
    Betty

  7. Cindy Harpring says:

    You and David will be in my thoughts. Hoping the worst is behind you.
    Cindy

  8. Starr Burgess says:

    Oh my Cindi, you and Dave had one heck of year trying to get right answers. Praying the doctors now are on right road and Dave’s health will improve daily. Has to be so stressful for you too. Take a deep breath and know in your heart, all the people reading this are sending prayers your way.

  9. Hi Cindi ~ all this was going on when I saw you at Sauder? Yikes! We trust the doctors to know everything ~ I guess we are the ones who have to have the knowledge, too! Your post will be very helpful, you can count on it! Thanks for sharing and I’m keeping your family in my prayers?

  10. COLLEEN cONRAD says:

    Thanks for sharing. Will be praying.

  11. What a rough time you’ve had. Hope he continues to improve! Its great you shared your story to help other people. My hubby had a infection go from his hand to his neck and it took out two discs and a vertebrae. His neck was about to collapse.. Infections are nothing to take lightly thats for sure.
    I’m not sure if it will work for your husband, but my sister was needing a colon surgery for diverticulitis, and she started taking aloe vera gel. She takes it every day when she feels problems, but then tapers off some when she feels better. She hasn’t had any surgery. Might be worth a try.. Be sure to take care of yourself!!!!

  12. One thing I have learned about dealing with my elderly parents through health issues is that you have to know your people and advocate for them. They thought my dad was sleeping when in reality he was overdosed on a pain med and close to crossing over. Don’t ever be afraid yo ask questions and point out things. Medical people are only human and there aren’t enough of them to go around. Their documentation load is significantly more than in the past. Best of luck for the surgery and may he heal quickly and completely!

  13. Patty Cassudy says:

    Wow Cindi, so much packed into your lives!! Praying for Dave and you. Thank you for sharing – this way we can continue to pray for you both.

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