What a Wonderful World

During the month of hospitalization and the beginning of dialysis my we are blessedhusband has lost 40 pounds. Now he is a big man to begin with and of course the mid section got bigger once he was not able to walk. Now he doesn’t have much more to spare. He has no appetite. He tries to eat; the most he ever manages is a few bites. “They” say this will pass as his body adjusts to the dialysis. His loss of strength even more than I gauged, needing assistance with every transfer and even just to roll over in bed. It breaks my heart that there is so little I can do to make it better.

Two neurologists and one neurosurgeon cannot agree on what is causing this loss of muscle tone, the painful atrophy.  The rehab neurologist told me Syringomyelia is progressive. The first we ever heard of that. When I researched it further after our conversation, from what little they know of this rare disease, it is only progressive if left untreated. He had the surgery, he has a shunt in his spinal cord and all the new CT and MRI scans show no further growths. The neurosurgeon decided it was a spinal cord stroke that he in fact had; and our neurologist saw no change in the syrinx. For some reason they have ruled out any neuromuscular disorders as he does have some strength in his upper body. He can’t lift his own leg! He used to be able to carry a stack of lumber on his shoulders and maintained that type of strength up until about three months ago.

I picked up a large brown grocery type paper bag full of new RX’s consisting of lotions, potions and pills. Literally two typed RX pages, 8- by 11-in. upon discharge! So I spent the day typing up my spreadsheets. Update permanent med list, create temporary list with times to give meds, calendar with list of doctor follow ups to schedule and coordinating transportation to dialysis. It’s a wonder I had any time to assist him at all. I guess I did; he was fed, watered and tucked into bed. He also has a home health care team. They are sending a nurse, an aide and physical therapist. This is all good. He’s home, happy as he can be under the current circumstances and will be ready to once again attempt to get some quality of life back.

All systems go; the ambulance arrives to take him to his first OP dialysis. For now he needs a stretcher, he is not strong enough to do the wheelchair transfers. As I’m following the ambulance to dialysis, all of it finally hits me. Is this it? Is this our new normal? Is this all my husband gets to have? I wipe at the tears that start flowing down my cheeks.

Like a sign from above, “What a Wonderful World” comes on the radio. I love that long and winding roadsong. It inspires me and brings me hope. Not only do the tears stop but a smile comes across my face slowly turning into a grin. Surely this is just a stepping stone, a place somewhere in between now and then. It may be a long road, and a winding road. But it is definitely not the end of the road.  This too shall pass.

How much, how little remains to be seen. For now I will count our blessings and do everything within my power to keep my husband safe, his attitude positive. Here goes another adventure into the unknown.

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4 thoughts on “What a Wonderful World

  1. Gail Kroll

    Dearest Pegi, That phrase is my Mom’s favorite. “This too shall pass.” Today I did one task I hate for Mom. Cook lunch/dinner. She wanted one of our favorite recipes so I bought all the ingredients and she is a happy camper eating now while watching the ELLEN DEGENGEROUS SHOW. This is a time we share between us. I hope you share time with Jim which you love. Share your tears and love. Mom and I are closer for it. (BUT? If you don’t want to? DON’t! You are one of the best people I have ever met! Remember that! Love, Gail xo

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  2. Avatar of LarryLarry

    Pegi, To an extent this is the new normal (Going to dialysis 3 times a week) but at least for us it gets easer as you go. I know you can find time to live as well because we have done that. (We did not think we could at the start) Mom got weaker at the start of dialysis before they got all of her meds straitened out which took a few months of changing and lab work. (At least they do the labs at dialysis here) The main problem that she continues to have and is normal for dialysis patients is anemia. This can make you tired and weak and took about a month to start getting in check and is tested weekly and when stating to job they give her meds for it right at dialysis through the machine. You will get used to this and start figuring out how to do things done and have time for each other.

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  3. Avatar of DeniseDenise

    Hi Pegi–During a significant change, I feel displaced, like I woke up where I don’t belong. I imagine it feels a bit to you like this. It’s so disconcerting! It’s also nerve-wracking and scary. I hope each day brings more comfort and confidence for both of you. Wishing you wonderful today. :)

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  4. Avatar of TrishTrish

    Pegi, Your heartfelt post melted my own heart. You are managing so much change right now and doing so beautifully. I too love that song and feel instantly comforted when I hear it. Give your guy a big hug from me and tell him he doesn’t need to be carting around lumber anymore so not to worry! It is disconcerting when the doctors don’t agree on a plan or diagnosis. It sounds like they’ve settled on something but it’s good you’re doing your own research. You are a wonderful advocate and have such love for Jim. Sending hugs and love to both of you. Take care, Trish

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