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Post HELLP Problems
From Sherry
Pugsxtoo@aol.com (Virginia Beach, VA) Just wanted to update you on my recent visit to internal medicine. They are once again sending me to a neurologist for a possible nerve biopsy. They say there is something called post HELLP neuropathy syndrome where your nerves get inflamed causing a lot of sensation. Has anyone heard of this? Thank you so much for your support
HELLP Survivor With Breast Cancer
From Lindsay RN, MSN
bdavis_37334@yahoo.com (Fayetteville, TN) I was diagnosed with severe HELLP syndrome in June 2001 and my daughter was delivered by emergency c-section at 34 weeks. She was perfectly healthy, while I remained ill. I finally felt back to "normal" about a year ago. Last month, I was diagnosed with locally advanced breast cancer. As I just turned 26 and have absolutely NO risk factors, I was completely taken back by this diagnosis. I have now started chemo. After six months of chemo, I will have a bilateral mastectomy followed by eight weeks of radiation. I was only 23 when I had my HELLP scare (again no family history). I am strong in faith and I know I will beat this, but I'm a little tired of being a statistic. By any chance, is there someone else out there who is both a HELLP and breast cancer survivor? I'm in need of info.
From Jodi
jodibonet@yahoo.com (Gentry, AR) wrote that she was diagnosed with HELLP at the age of 15! This is the youngest reported case of HELLP syndrome in our group. Once again, it has been proven that HELLP seems to have no boundaries.
From Kim
KimberlyPhillips@wmconnect.com (Gilmer, TX) We will be in Shreveport to pick Grant up at 5:30 PM tonight for him to come home! We are excited and can't wait to have him home where he belongs! Please pray he has no setbacks that will land him back into the hospital because the next few days he will have a lot that he will have to adjust to. He will be on Oxygen Home Concentrator at .25 liters and 2 diuretics that work together. We are not scared but a little worried that it could get overwhelming at times but we are ready and as prepared as we ever will be. Pray that he will eat even better at home because that is one thing he has been lagging behind with but so far the last few days he drank all his bottles and hasn't had to have any feedings with feeding tube. He will be home on just bottles, no feeding tube & no g-tube. We just wanted to share this exciting news with all of you and thank you all so much for the support and prayers during his lengthy illness. He has Broncho-Pulmonary Dysplasia, aka BPD which is a Chronic Lung Disease that premature babies are known for having. Our son Bryce also had this but his was very severe and he never out grew any of the problems. Grant should out grow his in the next few years. He could remain on Oxygen Therapy for years but we are praying for only months.
From Amanda
AmandaVL@aol.com (Oxford, NJ) I would like to appeal to all HELLP survivors to send me their stories. I am putting together a book on HELLP and looking for the personal, individual experiences that makes HELLP what it is to us, the survivors. What is vitally important to these stories is whether or not the survivor has been tested for other diseases, conditions, or gene mutations prior to or after having HELLP syndrome. I'm asking that the people that submit their stories please include this information. Even if they haven't had any testing, please indicate that.
A Bittersweet Story
From Annelize
annelize@atlantic.co.za (Eldorainge, Pretoria South Africa) I came across your website by accident. I found it to be very interesting as I did not really understood what HELLP Syndrome entailed. In an indirect way HELLP also touched my life and I would like to share my story with you. Might be a bit different from your usual letters. I met my husband October 2000. At that stage he, Christo, was a widower with two small boys, Marco 2 and Werner 4 months old. He lost his wife as a result of HELLP. She was only 27 years old. Her first pregnancy was perfectly normal. With Werner everything was fine until she was 28 weeks pregnant. She started feeling unwell. Went to the Doctor and he treated her for flu as the symptoms were very much the same. Two days later she realized something was seriously wrong and she went straight to hospital. They admitted her on the 27th of July '00. The next morning Werner went into stress. A cesarean was done and Werner was born that same day. At that stage they were unaware of her condition. After his birth she started bleeding internally. It was only then when they realized that it was HELLP syndrome, but it was already too late. She passed away 12 hours after she gave birth to Werner. You can only imagined what Christo went through, he lost his wife, his had a little two year old at home missing his mommy and a little one in ICU fighting for his life! Werner on the other hand, against all odds, miraculously survived. He was only a few days old when he underwent brain surgery to install a shunt. Christo was informed that he might be brain damaged and a whole lot of other side effects. The only "side-effect" is his eyes. He is visually impaired and can only differentiate between light and darkness. This they established when he was two months old. This, however, is not an obstacle for him. He is a perfect, handsome, clever, gorgeous little boy with an amazing sense of humor!!! He is my Angel! I met Christo four months after this whole tragedy. I immediately fell in love with him and the boys. Ten months later we got married. I always say that I am so lucky to have been given 3 handsome men at once!
CORRECTION:
I apologize for incorrectly reporting in the last newsletter that Sherry Pugsxtoo@aol.com lost her baby. I'm happy to report that Sherry's baby survived. - Judy
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