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2 years after pih/hellp and ARG!

Have you suffered from HELLP syndrome or had a pregnancy complicated by an underlying disorder? Discuss your concerns here

2 years after pih/hellp and ARG!

Postby amos » Mon Jun 25, 2012 05:08 pm

by amos (3 Posts), Mon Jun 25, 2012 05:08 pm

Its been two year since I was rushed from the dr. office to the hospital for a bp of 200/120. I fought to let the steriods work for two days and on a day 3 they said enough and I delivered at 30 weeks a 2lb 14oz baby girl. She is doing Awesome and no one would ever know she was early. Love her so much! After delivery I developed HELLP. I didnt know what hellp was. I also had my kidneys shutting down, but didnt know any of this til days later when my Husband had been searching on the internet to find some answers asked the Dr. does she have hellp. He never told us much but that I did have it and everytime a new nurse checked my chart they all said, "wow you were almost DIC". I didnt know then what that meant either. Blood clots were still oozing out of my csection incision when i came home. I had the same cruddy insurance I still have and it wouldnt cover anything and the doctor knew this. He is a good guy and was well aware I didnt want to destroy my family financially(I cried telling him this). That is why I stayed in a back room in labor delivery and not moved. Okay so now two years later, still have high pressures of which I have tried several different bp meds. Seeing my regular DR. Didnt want to be on bp meds at all but that didnt work out. Finally found one that works and that I can function on. Started having liver pains, they swore it was my gallbladder, so went in for ultrasound. Said it looked like a fatty liver. Did a CAT scan of the upper adominal and Dr still says its a fatty liver. I am overweight and I really feel like that blinds the dr a little. He hadnt even heard of hellp when I went to him. I have a huge deductable and the cat and ultra not to mention the bills from the hospital from two years ago has taken all my savings. I need to know what test I really need? How do I know what damage is from the Hellp and kidney failure? How do I not go into massive debt to get answers? I feel so bleepin frustrated. Its like okay what will kill me first, the liver, the kidneys, the heart, a stoke?! I am eating healthy and I have lost some weight, working on trying to do better for my life. I dont want to die in the next 10 years! I feel like my body is fighting me everyday. If its not being overly tired, its being dizzy, or side pain. ARG! What can I do to get the right help and some real answers? (yes I am kinda grippen here) Thanks for putting up with me! ;)
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Re: 2 years after pih/hellp and ARG!

Postby mllewellyn » Tue Jun 26, 2012 09:09 am

by mllewellyn (61 Posts), Tue Jun 26, 2012 09:09 am

I had HELLP at 24 weeks and delivered a stillborn. Both my liver and kidneys were starting to shut down. It took about a month for my pressures to normalize some, but they were not the same for years. About two years after the stillborn, I was having a lot of strange pains (joints, back). After initial tests came back for elevated liver enzymes, I was referred immediately to GI doctor. I was also diagnosed at that point with fatty liver. I don't know for sure, but I think HELLP can cause liver problems that are not diagnosed until later. Not long after that diagnosis, I became pre-diabetic and then diabetic (Type 2). I changed my diet, began an exercise regime, and lost weight. I lost 15 lbs and with the other changes, I am no longer diabetic and my fatty liver problem has also been resolved. I know this is not an answer, but the total body havoc that is wrecked by HELLP may linger for longer than anyone realizes. It causes widescale inflammation which can last for long periods of time changing body chemistry and maybe increasing the risks for many problems (high blood pressure, diabetes, auto-immune).
Best wishes and good luck finding some answers.
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Re: 2 years after pih/hellp and ARG!

Postby amos » Tue Jun 26, 2012 10:04 am

by amos (3 Posts), Tue Jun 26, 2012 10:04 am

Thank you for responding to my rant! I was just upset yesterday. I am so sorry for your loss. I am going in for bloodwork next week and we will see what it shows. I have just read so many things on here about autoimmune disorders that have come out and other disorders that ppl have found after going through hellp. I know I am not "normal"(my husband would laugh at that). I am just going to bite the financial bullet and let them run whatever test til we find out what all is going on. *SIGH* Its hard for me to do. I feel like I have become this financial burden on my family. I havent worked since the day I was put in the hospital. I am just having one of those weeks. I love this site for giving me a place where I can gripe to others who understand. I am very grateful for my family and very thankful that I am still here with them. I just needed to vent. I wish there more studies/reports on women who have went through hellp and followup years later. I would even like to see a suggestion list of test that we should have run. Something.
amos
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Re: 2 years after pih/hellp and ARG!

Postby tree » Wed Jun 27, 2012 09:43 pm

by tree (819 Posts), Wed Jun 27, 2012 09:43 pm

Welcome to the forums. It sounds like you have had a really tough experience between medical problems and the associated financial strain.
You can always make a plan for your blood work with your doctor based on your symptoms and family history. Some doctors think you should be tested for every possible autoimmune or clotting disorder after having PE. Just as many doctors prefer to conduct a smaller and more selective set of tests. My doctors thought is was reasonable to start testing for conditions that occur in my family history first. We didn't find anything conclusive, and I decided not to push it any further. Your case is different because your doctor suspects that you do have fatty liver. That may be a good starting point to develop a plan for further testing. This is really frustrating. Many of us struggle to bounce back from HELLP. Venting is good, and that is what we are here for.
Daughter born April 2009 at 35 weeks due to Class 1 HELLP
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