In My Shoes: More lung bleeding and migraines

Saturday, November 1, 2008

More lung bleeding and migraines

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Fiona is just struggling right now. The migraines are horrible. She wakes up with them. Sounds and lights just set her off. She it taking meds on a daily basis now which is very concerning. We see the REAL neurologist next week, not another nurse practitioner, and hopefully the doctor will be able to figure something out, change meds or something to help prevent these horrible headaches. One of the problems is that most of the migraine meds are processed through the liver so she can't take them at all or she has to take a very low doseage. Plus it was mentioned that they might want to do a cerebral angiogram. I pray this isn't a real request. She has had 2 MRIs of the brain and it showed no AVMs. I just don't want to go down that path again. Angiograms are so hard for even normal people, but for Fiona they are really hard with her dangerously low platelets. Then if for some reason they find an AVM it means immediate brain surgery. So far they have never seen an AVM in her brain. That is why they are saying the AVMs in her lungs is from liver disease. And here is where the doctors come to a screeching halt and can't agree what to do.

The endocrinologist said he can't changed her meds anymore to help her with her terrible, soaking through the sheets,night sweats. Her estrogen levels are fine but as he was looking at her calcium levels he found they are still low, even with all the medicine she is taking. The problem is to try to keep her bones healthy. She already has osteopenia. The bones are really taking a hit from liver disease. The liver doesn't handle fat soluble vitamins so the vitamin D you need for your bones isn't being held long enough for the body to use and absorb the calicum. Boy, trying to manually keep all the various vitamins and mineral levels right is really hard to do! You just don't realize how much the liver does. It is an organ in charge of so many things. When it isn't working it affects literally everything!

Fiona is starting to feel better from the viral bronchitis. The doctor prescribed a steroid inhaler but she doesn't see much improvement with it. However, the lung bleeding continues. She is still coughing up finger sized portions of blood on a daily basis, sometimes multiple times a day. It is usually VERY red blood. I was hoping it would calm down to the specks again. The pulmonologist said it is wasn't "normal" again by Monday we would have come in and see him.

I am so afraid this is going to all become a real emergency soon. This lung bleeding is a time bomb and just getting a virus is almost putting her over the edge. It is hard to know when to react and when not to since the bleeding is daily. We are in a terrible limbo because this has medically become so complicated. If they could see exactly where the blood was coming from we might be able to address it....MIGHT. I fear we are facing lung surgery of some sort, whether it is fixing the bleeding portion or taking part of her lung out, in the very near future. This is not a good place to be in. Fiona has been so very fortunate. She has had good doctors and a very caring team of people helping her. Her body is just struggling with end stage liver failure and it is trying very hard to keep functioning on less and less.

With all that said, Fiona looks good. You would never know she has these problems if you saw her. She is still her crazy self and makes us all smile. She has such a positive attitude through all of this.

This reminds me of liver disease. You are walking along, minding your own business and then WHAM, liver disease takes you down!

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Peggy

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Biliary Atresia

Biliary atresia is a condition in which the ducts that carry bile from the liver to the gallbladder and small intestine are not normal. These ducts can be injured, blocked, or missing. When the ducts that carry bile out of the liver are closed, bile backs up and damages liver tissue. In time the liver can develop scarring or cirrhosis. The gallbladder may also be abnormal or missing. The cause of Biliary Atresia is unknown. It occurs in one infant in every 15,000 live births. It is a serious disease which requires immediate surgical and medical treatment.

Arteriovenous Malformations AVMS

I have been diagnosed with AVMS in my lungs do to my liver disease. These have caused me to have 2 lung bleeds which were very scary. I still have more AVMS and they are causing me breathing problems. Below is an explanation of what the AVMs are and a picture of what is happening in my lungs.

Arteries and veins are part of the human cardiovascular system. Normally, the arteries in the vascular system carry oxygen-rich blood at a relatively high pressure. Structurally, arteries divide and sub-divide repeatedly, eventually forming a sponge-like capillary bed. Blood moves through the capillaries, giving up oxygen and taking up waste products from the surrounding cells. Capillaries successively join together, one upon the other, to form the veins that carry blood away at a relatively low pressure. The heart acts to pump blood from the low pressure veins to the high pressure arteries.
If the capillary bed is thought of as a sponge, then an AVM is the rough equivalent of jamming a tangle of flexible soda straws from artery to vein through that sponge. On arteriogram films AVM formation often resemble a tangle of spaghetti noodles. This tangle of blood vessels forms a relatively direct connection between high pressure arteries and low pressure veins.
The result is a collection of blood vessels with abnormal connections and no capillaries. This collection, often called a nidus, can be extremely fragile and prone to bleeding.