You never know

A forum to talk about the general challenges of daily life with MS.

You never know

Postby Terry » Mon Jul 06, 2009 4:27 am

Last Tuesday I was over an hour from home for a work meeting when I rec'd a call from my daughter that she was heading to the hospital. She is over 6 months along in pregnancy and had been having pain in the groin. She awoke that day to a swollen leg, purple in color- worse after doing the steps. Blood clot. From her groin to her ankle. Spent Tues- Sat in the hospital in a semi-private room. She was frightened and I was stunned. I spent each day and night with her. Came home twice when others were visiting to "un-gross"myself. I slept in a chair. Since it was not a private room, they didn't make it easy for me to stay.
Blood thinners galore.
She is home and I have not left her. I understand that the longer she has this, the less likely a piece will break off, but I assume the risk is still there for as long as the clot is there.
Wanted to thank you all for the lessons you have taught me to now. It was easier to understand all that went on after my lessons here on thinners, veins, vitamin K, fibrin, etc. What a treasure this site is.
I will work today, and my daughter-in-law is spending the day here.
My daughter is on lovinox shots twice a day. Cannot get up the steps, so is sleeping on the couch. I made myself a "pallet" (grandma's word) on the floor and stay near. I have been away from her the longest this morning as I prepare to go to work. I keep going halfway down the steps, though, to look at her. She is sleeping comfortably.
Saw a doppler scan at the hospital. Made my want to stick my neck out for a quick scan on my jugs.
Nurse told me she asked the unit to keep the other bed clear in daughter's room so I could stay. Angels everywhere.
All is well. One step at a time. May be on thinners forever. They are testing to see the cause. Pregnancy plus...what clotting disorder???
Keep thinking of my mom's overproduction of platelets and daughter's apparent clotting disorder. Me in the middle with MS.
Thankful for every minute that is simple. Have a friend who lost his daughter to the same thing a few years ago, though it was misdiagnosed and untreated. I am worried but so very thankful.
Out for now.
Terry
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Postby Loobie » Mon Jul 06, 2009 5:50 am

I'll say a prayer for you and your DIL. That must have been fun sleeping in that chair! Well it sounds like things have simmered down somewhat so that's good. Let's all hope the preganancy goes well from here. Hope you're OK today. I'm looking for something profound to say or some good philosophical stuff to throw about but I'm just so distracted by my impending trip and the leftovers from this last relapse I just feel like a lurker on here lately just shooting off little snippets at people and trying to hurry time along. You are doing it right Terry. I'm sure your daughter in law truly appreciates your strong maternal instinct. Of course I don't know you, but you get 'impressions' of people from their posts and the impression I've always got from you is that you are full of love and all about the family. I'm sure that's not lost on your daughter in law as she is probably freaking out having this happen this far along in her pregnancy. She's lucky to have a mom in law like you!
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Postby jimmylegs » Mon Jul 06, 2009 6:55 am

terry once she's off the pharma thinners, a natural ratio natural source vitamin e8 complex could help her keep the blood the right thickness (it's a K antagonist) plus provide all the rest of its benefits.
plenty of raw sunflower seeds :)
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Postby cheerleader » Mon Jul 06, 2009 10:59 am

Terry...thoughts to you and your daughter. You're so right...we just never know. Every day is a mystery, but we walk around acting like we've got in under control. Your daughter got diagnosed in time...she's on the thinners, she's in good hands. Every day that goes by, she's getting better. Hope and pray the pregnancy is OK, and that your daughter will deal with all this added stress. Same for you, Terry.

Did the docs say anything about antiphospholid antibodies or Hughes Syndrome...just wondering if they had any ideas on a possible clotting disorder? It's just crazy...and my heart goes out to you as a Mom. Nothing worse than watching our children suffer. We'd gladly take it all, just to keep them OK.

Please keep us posted and know that prayers and love are being sent to you right now...
Joan
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Terry » Tue Jul 07, 2009 6:14 am

Jennifer has a doc appt today. Some blood was drawn while she was in the hospital and a few tests were run. Only one result came back while we were there. No thyroid problem. I'm going to get this wrong but the nurse said there are like 12(?) clotting factors. They were testing some or all of those, not sure which. The also tested for lupus. Unsure if more. I asked about Hughes and the nurse did not know anything about it. They are saying she may be on the thinners forever, as there is no "cure" for clotting disorders- you just have to keep the blood thin.
There is the smallest chance that it is a pregnancy issue only. My greatest hope is that the baby laid on the vein or pushed something into it and cut off the flow- causing a clot. She has pain there for a while, and yet the doc said these clots can happen really fast. Wouldn't that be awesome?
My second desire would be that an aspirin a day will take care of it once the baby is here.
I haven't even read about the lovenox side effects. I have had no time really, and not much desire. With MS, we have the luxury of knowing it isn't gonna kill us- at least for a while. More time to question and doubt and experiment. With the blood clot it was kind of like- do whatever- just keep my baby and grandbaby alive!
Once they figure out the underlying issue we can look at alternative treatments. Jennifer will have to want to, though. She'll be 23 this month.
We'll also need good help if she tries non-pharm. No room for mistakes. Any input is appreciated.
Cheer, I have read "antiphospholid antibodies" here before, but not sure what that is. Can you explain?
Loobie, it was my baby- my daughter- not my DIL. Wouldn't have made much diff in that I'd have been there if needed, but in my heart- well, my heart was breaking. She is me and I am she. Ya' know? (Only she is much more precious!) I asked the doppler lady how many clots she had and behind Jennifer's head she mouthed with a concerned look "a lot". Jennifer asked "a lot?" I laughed and told the lady- sorry, we read each other's minds. lol. We really do.
I'll post what I am told today. From an MS perspective, it'll be interesting to know what is going on in her blood. From a mom's perspective, it is dire.
One nurse or doc told us her platelets were a little high. Doc said 400,000- not really high. Mom's were over a million for a while.
Thanks for listening. Friends and family were awesome, but this is where I learn. So much of what was discussed at the hospital was the same as what we talk about here. Knew I would get some "back" or support if I posted.
And Lew, you'll be back from sunny CA before you know it. You know time keeps moving. Don't stress. Just enjoy these days as the LAST days you'll have blocked jugs. Celebrate every moment, knowing that help is just around the corner. I can't wait to hear all the good things that are coming. And when you are better- we have to do that Reds game!
Terry
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Postby Loobie » Tue Jul 07, 2009 6:21 am

I have no idea why I picked up daughter in law. But as you say, you'd be there anyway, but there just can't be anything like one of your own brood in some distress; I can't imagine. I'll keep praying that she doesn't have any major crap to deal with and can focus on that Grandbaby!
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Postby peekaboo » Tue Jul 07, 2009 7:53 am

Terry -

so sorry to hear - wish the simplist solution for your daughter and grand baby. You are a good mother and it is obvious you will do anything for jennifer and the life she carries w/in her.

Is this your first grandchild?
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Postby cheerleader » Tue Jul 07, 2009 9:37 am

Oh, Terry...hang in there. Please God, your girl is going to be just fine. Antiphospholipid antibodies info here:
http://www.medicinenet.com/antiphosphol ... rticle.htm

This is also what we call "Hughes Syndrome"- caused by a blood protein. It's a differential for MS, just figured out in the 1980s by Dr. Hughes...I'm sure they're testing her for it, since it's a clotting disorder. Treatment is blood thinners for life...some take a baby aspirin.

My son and I do that mind reading thing too...hard to keep secrets around our house :)
Keep in touch with us here...let us know how Jennifer is doing.
xox,
Joan
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Terry » Tue Jul 07, 2009 4:58 pm

Negative for lupus.
No other tests back. Yes, they tested for Hughes, Cheer. We'll know next Tuesday.
Thanks Peek. This will be my 6th grandbaby, though this is my daughter's first. The baby is cute- we saw her in 4D ultrasound last week.
Doc assures me that Jennifer should not be alone. She does not walk well and apparently is still at high risk of the clot breaking and moving. I had hoped that risk was greatly diminished by now, but doc said she is "still in the acute phase". I am working on getting help as I really have to work sometimes. Had help yesterday and today after the doc. Have help tomorrow. After that, not sure yet. As I write this I feel ridiculous for even going to work, but hoping for the best seems to include daughter, income, house, etc.
Haven't been reading as much here. Hope all are well. I'll catch up eventually!
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Postby catfreak » Tue Jul 07, 2009 9:02 pm

Terry,

Prayer a being spoken for you, your daughter and baby. I don't have any real words of wisdom just prayer and love to send.

Cat
Holly - Shine On You Crazy Diamond - Pink Floyd

9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.
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Postby Terry » Wed Jul 15, 2009 5:41 am

No lupus- no thyroid disorder- no Hughes- No NOTHING! Doc said just pregnancy. Jennifer cried tears of relief and wanted to "run a marathon". Ha!
So on we go- two thinner shots a day. She is using a walker. She is able to go to work with me and we set up a cot in the back room there for her to rest. Today and tomorrow a friend comes here so she can stay home and rest.
Clots in the entire left leg. I thought it was only the external iliac, but I was wrong. Another doppler yesterday with the same tech and she told me I thought wrong. Entire leg is full. May be years to heal.
One day at a time.
Terry
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Postby jimmylegs » Wed Jul 15, 2009 7:39 am

what a relief terry! hopefully it will be less than a year to recover.

here are a couple of potentially useful links:
http://www.nutralegacy.com/blog/general ... pregnancy/
http://www.nutralegacy.com/blog/general ... ing-foods/
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Postby Terry » Fri Jul 17, 2009 5:56 am

Thanks Jimmy.
Today is Jennifer's 23rd birthday. We are about to get her "shot- shower- and shaved" and head off to my work. Mexican dinner tonight with family. Sunday is her baby shower, held inside an old home at a local park. I hope she enjoys the weekend. She has been a prisoner of sorts. She seems to be walking better, though, and asks for tylenol less often. She wouldn't take pain meds, even in the hospital.
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