More Observations

Yesterday I noticed how crisp, clear and bright things are. If you would have asked me before the procedure if the sight in my right eye was somehow dimmer, I would have said no. It is subtle, but there is a difference, like switching from a normal TV to a high def TV. I have also noticed a slight improvement in my left eye, nothing miraculous, but I think it's a good sign that my eye will improve over time. Also I have climbed the stairs today without really noticing. I used to feel like there were rubber bands attached to the bottom floor and every step got harder and harder and when I made it to the top I felt I needed a rest. I didn't even think about the climb when I got to the top today, I just went on with my business. These are small things, but encouraging. The big miraculous thing will be having the progression stop! That would be incredible and allow me to live an amazingly normal life.

I tried to take it easy yesterday, but with three kids it's hard to do. My incision got really sore by the end, but it feels fine now.

I will be scheduling my MRI and MRV today. I haven't had one since my diagnosis and the MRV will help the doctor see how well the repair went. I'm not really looking forward to another 48 hours of pumping and dumping. It is so much easier to just feed her, plus my pump doesn't work very well.

Improvements

I noticed two things last night that I feel point to proper blood flow. Several times a day my ears would ring, for seemingly no reason, they have not rung since the procedure! Also, every night as I layed there trying to sleep I would feel and hear a strong pulse in my head. I tried to hear that last night and I couldn't! Even laying very still and listening very quietly, all I could feel was the very slight beat of my heart, just as it should be.

Liberated and I'm Feeling Good!

I went into the hospital at 8:30 this morning to have angioplasty on my veins. Everything went really well. The doctor did a very thorough job of looking at all of my cerebral veins again and took lots of pressure measurements to make sure all was open and flowing as it should, which meant a lot of holding my breathe. He found that my jugular vein wasn't narrowed as they thought. He said the other doctor must have had the catheter up too high in the vein and caused the reflux that he had seen. The azygos vein was narrowed though and he did balloon that area.

At one point during the procedure I felt a lot of pressure and some pain in my chest, I mentioned it and they said they were ballooning it right then. They put a lot more catheters in and out this time, different lengths and sizes and I could feel them being more rough. That is pretty much the only place I am sore right now, just above my leg where they were inserting it.

I'm not sure if I feel any different yet. The sedation and anesthetic made me pretty tired and I have been trying to take it easy today. I think only time will tell. My mom made the analogy of unwatered, brown grass. Even after you have watered it, it still takes a week or two to green up again. I do feel a little clearer, not in eyesight but in awareness, if that makes sense, but I haven't tried to do much and it has only been 7 hours.

I am on blood thinners for a month. I have to inject myself with Lovenox twice a day for a week and then take Plavix for a month. The doctor checked and said both are ok for breastfeeding.
They are expensive meds, over $1,000 just for Lovenox, but my insurance paid for all but $250. I've never injected myself before, I hope I can do it tonight.

Two Month Check Up

Claire had her 2 month doctor's appointment yesterday. She is little, coming in at 9lbs 9oz. The doctor is not concerned because she is well proportioned and meets all of the cognitive mile stones. He even says she seems advanced and cautioned me that she might end up being an early walker.

They clipped her tongue yesterday, she screamed for a lot longer than a newborn would, poor thing. I should have had him do it at the first appointment, but she is fine now. But she is constipated, it's been almost a week since she's pooped and I just started feeding her a little bit of watered down apple juice to get her to go.

She is so sweet. We all love her so much.

My Next Venogram

I talked to Dr. Hatch yesterday. He said he has been studying my images and found my jugular vein is significantly narrowed right at the valve at the top of the vein. He didn't notice it at first because it is common for valves to be narrower than the rest of the vein, but not this much. He also found a couple places in my azygos vein (the one that drains the spine) that are narrowed and can be opened also.
It is good news that he found something to fix. My next venogram is scheduled for November 22, the Monday before Thanksgiving. I plan on taking it easier this time during recovery. The last venogram through me for a loop. I should feel better within a week or two and hopefully I will have more energy and stop the progression of MS. Wahoo!

3 is the azygos vein.
I guess mine isn't nice and smooth like that if it has a couple of narrow spots.

First Captured Smile

I finally caught a smile on camera. Not a great one, but cute. It is hard to get good pics of babies.

I also made her some leg warmers. I wrote about them on my craft blog: buzzaboutbaby.blogspot.com

8 Weeks Old Already!

These past 8 weeks have gone by so fast. We are really enjoying our Claire Bear. She has smiled at us everyday since she was 5 weeks old, though we haven't caught one on camera yet.

Yes, she is in our bathroom sink in this picture. And the blow dryer is on, resting on the counter. It is the only way I can put her down without her crying while I get ready in the morning.
She loves to be held!

She is a little girl, I'm not sure how much she weighs, I'm guessing right around 10 lbs, but she doesn't fit any of the 0-3 months clothes yet. And the big news is that she slept through the night for the first time last night! Just yesterday I told my sister-in-law that she wasn't ready to do that yet. Maybe just hearing that it was possible helped both Claire and I to not get up in the night. I hope she keeps it up.

We haven't been getting many pictures of her. Just busy with three kids I guess. I am surprised she has slept on her own this long to allow me to write a couple of blog posts.

A Toy Story Halloween

Audrey and Nathan knew just what they wanted to be for Halloween. We found a Buzz Lightyear costume online for Nathan, but I couldn't find a Jessie costume for less than $40, so I started making Audrey's costume before Claire was born. It took me 6 weeks to finish it, half an hour here and there. I found it is quite hard to accomplish anything with a newborn who loves to be held.


I had cow fabric left over, so I thought it would be really fun to make a vest so Curtis could be Woody.

Claire was Little Bo Peep

And I was Barbie from Toy Story 3, well my interpretation of her outfit.
There was no way I was going to wear a spandex body suit.

It rained like CRAZY during the neighborhood trunk or treat. When we got home Audrey said, "I'm slopping wet!" The trick or treat buckets were full of water and the candy was sticky and soggy. I don't think the kids minded.

On Not Feeling Well...

Tuesday after the venogram I was tired, but I felt ok. Wednesday I took it easy, had a slight headache and was still tired. Thursday I felt my head was going to explode. The pressure in my head was bearable, but worse than I had ever felt it and my fatigue was awful too. I spent the whole day laying on the couch. Feeling blah for weeks before, because of night time feedings, and feeling even worse for a couple of days made me really worry about the future and I ended up quite depressed on Friday. I kept thinking about how my children are so amazing and precious and how they deserve a mom who has the energy to play with them, who doesn't yell at them for having fun and being loud, just because it is overstimulating to her. They deserve a mom who can dance at their wedding and can come and be helpful when they have children. My grandchildren deserve a grandma who can enjoy and play with them. I don't want to be in a nursing home when I am in my 50's like my aunt. Audrey would only be in her early 20's and Claire would still be in high school. That's not the life I want for them.

I know that is not a good way to think, to dwell on what might happen. It is hard to feel bad when you have a degenerative disease, because you end up wondering if this feeling is a progression of the disease and if you will ever feel better again.

I do a lot better on weekends when I can be with Curtis and other people. Curtis and John (my father-in-law) gave me a priesthood blessing last night. I am feeling better, both physically and emotionally. I'm trying to keep my chin up. I am trying to be patient as I wait for the doctor to come up with a solution to fix my vein. It is my hope for me and my children, so I can be the mommy they deserve.

The Results...

The venogram went smoothly. They were able to see that my left jugular vein was blocked. All of the blood flows back over to the right and goes down. This makes sense because my vision problems and the slught numbness I feel is on the left side. The problem is that the doctor did not see an specific narrowing which he could easily do angioplasty on. He is not sure what is causing the blockage, so he didn't do anything. He will be consulting other doctors and his partner Dr. Black is going to a convention this week for the National Association of Phlebotomy where Dr. Zamboni will be the keynote speaker, so there will be lots of people to ask. When he knows what to do I will have the procedure done all over again.

It was a pretty easy procedure, not much pain or recovery. To insert the catheter into my veins, they used a large needle right at the bend of my leg, more towards the front. When they said groin I thought it would be down between my legs, but it wasn't. They gave me a general anesthetic and sedation. I was half asleep for most of it, but could still answer questions and hold my breath when they asked. I could feel the catheter in certain places as it moved through my veins, there was a bubbly sensation that went with it. They kept me for an hour after to make sure I was ok and then I walked out, like nothing had happened, just a little sleepy from the drugs. They said I couldn't lift anything that day and to take it easy the next.

I have to "pump and dump" for 48 hours so that Claire doesn't get any contrast through my breast milk. She is taking a bottle just fine and thanks to a friend who had plenty of milk stored in the freeze, she is drinking mostly breast milk. Curtis fed her all night and let me sleep in another room so I could get a full night's sleep. It was so nice.

So I have CCSVI! That is good news and more proof the Dr. Zamboni is right. It is just a little disappointing I am not "liberated" yet.

I was asked how I heard about Dr. Hatch. There were actually two sources. First I found this (http://www.hubbardfoundation.org/CCSVI_multi-centered_registry_locations.html) website that lists doctors who are doing the procedure. I emailed them and they sent me these names:
Ogden, UT- Sandra J. Althaus

Provo, UT- Carl Black

Salt Lake City, UT- Peter B. Hathaway

And then my "blogging friend" Toby posted about Dr. Hatch here: http://mamawithms.blogspot.com/

She went to Costa Rica to be treated, but her sister is have the procedure tomorrow with Dr. Hatch.

This is all so new, Dr. Hatch has only done the procedure a handful of times for this specific reason but has done the procedure a thousand times for other reasons. There is still so much to learn, but I am excited to be part of it. My sister A has an appointment with Dr. Hatch next week. She has not been diagnosed with MS, but has fatigue issues and has a lesion on her brain, so we kind of suspect it. How amazing would it be for her to have her veins fixed before any real problems occur!

The Liberation Procedure

I have very exciting news, life changing news! I found a doctor here in Utah that is doing the Liberation Procedure and I am scheduled for the venogram/angioplasty on Tuesday, November 2nd. Tomorrow!

This procedure is still experimental, but so many people with MS have had amazing results by having angioplasty to open their jugular veins. The theory of CCSVI is that MS, which we have always called an autoimmune disease, is actually caused by improper blood drainage from the brain.

I am so excited to feel better!

I want to write down the symptoms I am having right now, not to complain, just so that I can compare them with how I feel tomorrow, a couple months from now and years down the road.

A big one for me is fatigue. (Exaggerated by feeding a newborn throughout the night.) I tire pretty easily, I am lucky when I have the energy to make dinner when evening comes around.

Brain fog: I feel like a lot of my thoughts/words/names have to get through a maze before they come out of my mouth. Audrey often finishes a sentence for me and at times I have to use several sentences to explain the one word that I can't come up with.

Light numbness: Usually only in my pinky or pinky toes, it is just a weird/not quite right feeling, not really numb. I have a feeling that this could eventually spread to my ring finger, then my middle until my whole hand feels that way. This feeling is only at times, not always.

I have ringing in my ears quite frequently. If I am lying in bed and everything is quiet, there is always a constant light buzzing sound. I think this points to reflux or impaired blood drainage from my brain.

Optic Neuritis: My eye was mostly better until the last couple weeks of pregnancy, but now it is as bad as ever, with mild aching behind it.

Headaches: They are mild, but last for hours when I have them.

Achy, tingly shoulders and upper back. My whole body yearns for my shoulders to be massaged. They are always so tight.

For having MS, these symptoms are nothing. I can't image what my aunt has dealt with all these years. The procedure is giving me hope of not having to find out for myself.

I will let you all know how I feel tomorrow after I am liberated. Wahoo!!!