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bootsiediabetic1 (@bootsiediabeitc1)

Seizures and calciphylaxis

Epilepsy & Seizures | Last Active: Feb 10, 2018 | Replies (7)

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@rosemarya

@bootsiediabeitc1, I do not have any knowledge or experience with the conditions that your husband is experiencing. I am sorry that he and you are going through these complications. I was only on dialysis for acute kidney failure just prior to transplant.

I am a big believer in asking questions and seeking information. So – I want to ask you if your nephrologist / neurologist are communicating about your husband’s treatment? Have you considered a second opinion?

I had to look up kidney disease and calciphylaxis to learn what it was. Here is what I found, maybe there is some information that might be helpful.
https://www.mayoclinic.org/diseases-conditions/calciphylaxis/symptoms-causes/syc-20370559
Rosemary

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Replies to "@bootsiediabeitc1, I do not have any knowledge or experience with the conditions that your husband is..."

Thank you @rosemarya. Me and my family have learned to ask questions and seek answers throughout this process. While some staff is knowledgeable and communicative, others are not. Luckily my son and daughter in law are both nurses and are able to recommend certain procedures. I am just glad they are here to recommend ideas that the hospital staff has been overlooking. Currently my husband’s leg infection is not the highest priority due to the latest introduction of seizures. Thanks to 4 different anti-seizure medications, the seizures have stopped. They have been weaning him off certain ones and lowering the dosage, however it has been 5 days of him strictly sleeping. Luckily EEG shows no head trauma and my husband is making more head movement each day, but still waiting for him to wake up.
We will keep asking questions. My family and I appreciate your valuable input.

Patty

@bootsiediabeitc1
Patty, I hope that the positive news continues for your husband.

I want to share something about my experience that might be helpful in the future: When I was in critical condition, I was not aware of what was happening. I only was aware when I was moved or if I heard someone calling my name. Afterwards, I struggled with that gap in my memory and my husband and family had to fill me in on what had occurred. I tell you this because I am detail person, and I was really frustrated (almost angry) when I could not get the details from them ie the treatment and events, the days, the times, the people involved. I am only mentioning this so that you will be prepared if he wants you to get him up-to-date on what happened. It could be now or later or ongoing. It was quite frustrating for me and they did not really understand my need to ask so many questions. It was and still painful for them because of the severity of my situation at that time.

Rosemary

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