Years later- still questioning the Root Cause

Help with physical and emotional healing for moms who have suffered loss.

Moderators: justme, ***, deb

Years later- still questioning the Root Cause

Postby Isurvived » Feb 01, 2014 4:20 am

Many years have passed and I still feel cheated that a root cause for our loss was never found.

I am due to get another endoscopy again, (first endoscopy was shortly after my loss and it revealed GERD and hiatal hernia) and I am also getting my first colonoscopy the same day.

Not only do I seek to understand whether I have more issues other than the hiatal hernia and GERD, I would like some damn explanation. Does this sound familiar to anyone?

I currently have esophagus symptoms. I'll write back if anything surfaces after these tests.

Fellow HG survivors:
This study caught my attention. Take a look: http://www.ncbi.nlm.nih.gov/pubmed/16490120

I ask myself: what might have happened if I had better medical care? What might have happened if I advocated for myself much better- if I insisted on _______ (fill in the blank). I feel a little bitter about it. To me it seems as though I might have had achalasia. I'll let you know if I ever unravel my mystery.

Best to all of you- I wish you all the best as you recover from your losses.
Isurvived
New Member
 
Posts: 9
Joined: Oct 20, 2009 9:04 am

Re: Years later- still questioning the Root Cause

Postby justme » Feb 11, 2014 3:59 pm

I just want to give you hugs. The not knowing and the thinking we needed better care are such haunting thoughts. May you find peace.
justme
Forum Moderator
 
Posts: 4818
Joined: Apr 21, 2006 10:48 am

Re: Years later- still questioning the Root Cause

Postby Isurvived » Feb 11, 2014 5:18 pm

Thanks for the cyber hug. You are very kind.

My endoscopy revealed a ring present in the distal esophagus. It is called a Schatzki's ring. Initial treatment occurred during the endoscopy. The doctor told me she dilated the ring. Next week I'll meet with her and discuss my GERD, my hiatal hernia and now this ring. I wonder how many women here might also have had this condition? I wonder if it is possible to alert other HG patients to have the test for this?

Thanks again. You are sweet.
Isurvived
New Member
 
Posts: 9
Joined: Oct 20, 2009 9:04 am

Re: Years later- still questioning the Root Cause

Postby Nina19 » Oct 21, 2014 6:15 am

So sorry for your loss xx

Your story touched and inspired me... I really relate to your quest for answers; the what ifs. And especially the desperate need for better understanding and treatment for this condition. I wish I had advocated more strongly for myself, or had someone who understood and could have done so for me. I isolated myself and tried to block out the world, as any interaction or sensory input (smell, touch, sound, light, movement) was just completely overwhelming - it would send a physical shockwave through my body and made the nausea and vomiting worse.

I feel very strongly about advocating, informing, supporting and protecting, not just HG sufferers, but all pregnant women who go through difficult pregnancies, loss (miscarriage, termination, stillbirth). In South Africa, where I live, I have since consulted a lawyer and I am studying the legislative acts on Sterilisation and Termination, as both these procedures were done on me at the same time, while I was in a suicidal state of mind due to the HG, without the hospital even contacting or involving my family for support, with no waiting period (it was done that afternoon!), without any counselling before or after...

I feel very strongly about having checks and balances in place to protect patients against the doctors (who decide it's the easiest way to get a problem patient out of their ward, just because they don't understand how to treat the condition effectively) and themselves, when they are at their most vulnerable.

I also want to try and improve the local access to resources for HG'ers (including via this site, by trying to identify doctors to be listed and volunteers registered). You desperately need a doctor who understands this condition and also someone who has been there and REALLY knows what you are going through, to support, listen and advocate for you when you can't. I lacked both and it cost me dearly...

I hope you make headway on your quest for answers. Keep at it! Not knowing, wondering "what if" , is such a difficult part of this journey.

Hugs to you
xx
Nina19
New Member
 
Posts: 31
Joined: Aug 05, 2014 8:12 am

Re: Years later- still questioning the Root Cause

Postby Isurvived » Oct 21, 2014 10:11 am

Dear Nina and other HG friends

Thanks for your reply.

My heart goes out to you all. Your stories matter. Yes they are taxing to tell. Yes, these stories evoke perhaps the lowest points in our lives, but it seems important that these stories should emerge. They just might help someone. Maybe somehow there is a pattern to all of this. Maybe pregnant women will get better care because of our losses? Maybe?

I just want to mention that since my last post I had 2 MRI's of my brain a few months apart. The MRIs were justified because my recovery from an accident last winter seemed to have left some dizziness and static balance issues. Anyway, the MRIs revealed that I have had a previous brain injury many years ago. The radiologist who reviewed the MRI has top notch credentials- associated with Harvard--is certain that the injuries are old. He had a team of doctors look at it and he was concerned about how it was definitely not related to my accident. He wanted to see if there was any change over time between one MRI and the second MRI . (There was not)

If anyone here wants the exact language from the brain MRI report, I could provide it. Maybe we could to track whether any other HG patients have irregular MRI's of the brain. It is thought that I may have had two small vessel infarcts (strokes) and/or previous brain trauma. There is gliosis. There are two areas of hyperintensity...

This MRI report is jarring. It causes me to churn out dozens of theories...here are just two:
1. When I delivered my first baby my blood pressure was dangerously high, even though it normally is extremely low. ( I was athletic and always had extremely low blood pressure) Who knows, maybe I had a stroke or strokes during the time I was delivering? And maybe it was not detected, despite the fact I was in a very good hospital. Maybe my second pregnancy was so bad because of the damage that happened during the deliver of my first child??? Or ... more likely...
2. During the second pregnancy, in which my HG was severe and I was hospitalized many times, early on I was given compazine and it caused a bad involuntary movements in my face and my hands. I went to the emergency room...During other hospitalizations, other medicines caused other bad bad reactions. I responded poorly to all of them. The last night before my termination, I was given a drug to help me sleep (I had not slept in weeks) and I didn't sleep at all but had a very sick very dangerous feeling. I thought I was going to die. My head was spinning and I felt terrible. I felt dizzy. I could barely speak. It was many hours before I felt better and I vowed that I would end the pregnancy so I could survive. I really was feeling like I was going to die. Sorry to repeat this but I could barely speak and when I begged the the nurse for help, the nurse said my vital signs were normal.. and she said very rude things about hiding the coat hangers. My husband was not present. Even when my husband showed up, he trusted the nurses (we did not see a doc) and said that I must be okay, since they said I was. I assured him I had the worst night of my life and that I was definitely not fine. In retrospect, now that I see my MRI reports of my brain, I am now wondering if I was having a stroke during that second pregnancy that had gone so badly.

Make no mistake- My baby was wanted. Very wanted! I had a very painful tonsillectomy at age 37 because I planned to get pregnant again and I thought it would help me have a healthier pregnancy. It was a very long recovery from that tonsillectomy and it was deliberate. I had the financial means and the desire to have another child.This also was not about money. It is a mystery why my care was so poor- it was a well regarded hospital in a ritzy section of a city. Sadly, our destiny was altered because of my health. The HG episode forced me to choose between the terrible and the horrible.

As I read the tragedies from HG survivors, I think of an quote from an author about how hope emerges every day, just as the sun rises:
“There's always a story. It's all stories, really. The sun coming up every day is a story. Everything's got a story in it. Change the story, change the world.” Terry Pratchett

Fast forward to the present. I will be seeing a new primary care physician soon and undoubtedly be seeing a cardiologist and a neurologist. I'll write back if anything solid emerges as I receive more medical care. I'm more at peace now, because I now know from my MRI reports, that my situation truly was grave. I truly am lucky to be alive and I am glad to be able to write about what happened. Peace to all of you-- Wishing all of you peace. You matter. Your stories are important. Thank you for your kindness.
Isurvived
New Member
 
Posts: 9
Joined: Oct 20, 2009 9:04 am

Re: Years later- still questioning the Root Cause

Postby Nina19 » Nov 07, 2014 6:11 am

Hello again,

Oh wow... when I read your reply, parts of it was like reading my recollection of my own last night before I terminated! I also hadn't slept for days / weeks... they gave me something that was supposed to help with that, but that instead made me feel much worse: like I was burning up, dizzy, much more nauseous... and I also literally felt I was going to die. I was convinced of it and terrified of leaving my daughter without a mother. That was what stuck in my head and carried my decision to terminate - survival. None of the nursing staff (or doctors) seemed to notice, believe or care what was happening to me. I could also hardly speak and was so weak the next morning that I could not even sit up when the doctor came to see me. It really struck me how similar our experiences were in that last night... can you remember what medication they gave you to try and help you sleep? It probably won't be the same, as I'm in South Africa, but still...? Who knows? I had a brain scan when I was younger, so if I were to have one now, I would possibly have some basis for comparison. It's just too expensive to do here without solid grounds for medical aid motivation...

Something my psychologist noted recently was that I am someone who, even under normal circumstances, seems to be hyper alert to detail, noise etc. I will wake up on the other end of the house if someone is opening a plastic bag in the kitchen, I will wake up in the middle of the night if there is a small crack in the curtain letting light into my room... small things like that. And I'm very detail oriented, as a person and in my line of work. So she was wondering how this perhaps contributed to my extreme hypersensitivity to light, sound, motion, smell, touch etc and in turn to me developing HG, and especially to such an extreme degree. It was so bad that all the sensory input became physically painful to try and deal with. Which made it all the more excruciating to be placed in a ward with 3 other patients, who were allowed visitors all the time any time - while I had specifically asked my own friends and family to limit any visits, as I couldn't cope with the personal interaction. So I still had the sensory overload out of my environment, but without the support of my friends an family in the form of their physical presence (as they were trying to respect my wishes).

So a question she posed, was whether a predisposition to hyper alert senses might be a contributing factor to either developing HG or making the degree / duration worse. Does anyone else perhaps have some thoughts on this?

Thanks for the support and a place to be able to talk about this, share the experience and discuss our thoughts...

Love
Nina
Nina19
New Member
 
Posts: 31
Joined: Aug 05, 2014 8:12 am

Re: Years later- still questioning the Root Cause

Postby Isurvived » Nov 07, 2014 7:45 am

It is sad that we both experienced the same medical neglect. Truly sad, yes.

My thinking the day after I survived that horrible night: If I spend one more night at that hospital where no doctor ever visits me and the nurses simply gave me IV fluids with no nutritional content, my health will slip and slip and slip. It was terrifying that the hospital nurses would not even ask the doctors to give me nutritional ingredients in my Intravenous fluid. (Why?) My little boy needed to have a mom. I would not leave him without a mom.

I firmly believe that the cause of HG is physiological- not psychological! I stay away from psychology and psychiatry.

Take a look at this:
http://www.ncbi.nlm.nih.gov/pubmed/21720901
Neurol Sci. 2012 Feb;33(1):133-5. doi: 10.1007/s10072-011-0660-y. Epub 2011 Jul 1.
Neurological complications in hyperemesis gravidarum.
Zara G1, Codemo V, Palmieri A, Schiff S, Cagnin A, Citton V, Manara R.
Author information
Abstract

Hyperemesis gravidarum can impair correct absorption of an adequate amount of thiamine and can cause electrolyte imbalance. This study investigated the neurological complications in a pregnant woman with hyperemesis gravidarum. A 29-year-old pregnant woman was admitted for hyperemesis gravidarum. Besides undernutrition, a neurological examination disclosed weakness with hyporeflexia, ophthalmoparesis, multidirectional nystagmus and optic disks swelling; the patient became rapidly comatose. Brain MRI showed symmetric signal hyperintensity and swelling of periaqueductal area, hypothalamus and mammillary bodies, medial and posterior portions of the thalamus and columns of fornix, consistent with Wernicke encephalopathy (WE). Neurophysiological studies revealed an axonal sensory-motor polyneuropathy, likely due to thiamine deficiency or critical illness polyneuropathy. Sodium and potassium supplementation and parenteral thiamine were administered with improvement of consciousness state in a few days. WE evolved in Korsakoff syndrome. A repeat MRI showed a marked improvement of WE-related alterations and a new hyperintense lesion in the pons, suggestive of central pontine myelinolysis. No sign or symptom due to involvement of the pons was present.

This makes me wonder whether any HG sufferers are ever given an MRI of the brain. If they wre given an MRI of the brain (with contrast dye), would the HG survivor's have brain scans similar to mine? My brain scan shows hyperintensities, but not in the same areas as noted above. Could it be that some women who are afflicted with HG are not absorbing a basic nutrient that is required for life- but maybe not thiamine?

I believe I should start conversations with the researchers of HG, rather than just wallowing in my own pity. I'd like to make a lasting difference and change the outcomes for others. Who would listen to my theories?

Again, thanks so much for listening to my voice. I guess I am not so alone after all! Thanks!! Best to you!
Isurvived
New Member
 
Posts: 9
Joined: Oct 20, 2009 9:04 am


Return to Loss, Grief & Recovery

Who is online

Users browsing this forum: No registered users and 2 guests