Thursday, May 1, 2008

Slow and Steady...

Hi All,

Happy May!
I hope the flowers are blooming and the birds are chirping in your neck of the woods.

It is amazing to think my surgery was 2 weeks ago today. I am continuing to heal post surgery and get back to a sense of normalcy.

It has been a busy week thus far with many trips to various doctors. Thanks to my amazing husband, Mike, for taking such great care of me and not just being my personal valet. We have found our silliest time together seems to be in the exam room prior to the doctor coming in.

I am happy to report that my left bulb drain was removed earlier in the week which means I can now go back to sleeping on my side. Yeah!

Speaking of sides:
The left side of my body is healing beautifully.
The right side is taking its time to process all that has gone on. One of the factors that is affecting my physical healing is my bleeding disorder (von Willebrand's Type 1). While it is certainly not life threatening it is of importance and has had a direct result on my progress. Until this side heals more and I am able to get the bulb drain removed I am not able to begin Chemo (which is okay) as the risk of infection is too great. So better to be cautious and allow my body the time to heal properly.

For those that are saying "bleeding disorder" I found the following which explains it better than I could.

What Is von Willebrand Disease?

Von Willebrand disease, or vWD, is an inherited disorder - meaning it's passed from parent to child through genes - that affects the blood's ability to clot properly. It takes its name from Dr. Erik von Willebrand, who first described the condition in 1926. As a group, bleeding disorders (including one you may have heard about - hemophilia) are rare. Von Willebrand disease is the most common inherited bleeding disorder, affecting about 1% to 2% of people. Unlike hemophilia, which usually affects only guys, vWD affects both guys and girls.

Normally, bleeding usually occurs when a blood vessel is cut or torn. Platelets (small cells that float in the blood) plug the hole in the blood vessel to stop blood from leaking out. With the help of calcium, vitamin K, and a protein called fibrinogen, the platelets create a mesh to hold the plug in place and close the wound. As this mesh dries, it hardens and forms a scab to protect the wound as it heals.

A substance in the blood known as von Willebrand factor helps platelets stick to damaged blood vessels. Special proteins known as clotting factors are also needed to help blood clot. Von Willebrand factor carries one of these clotting factors, called factor VIII, in the blood.

People with von Willebrand disease have bleeding problems because the levels or function of these blood components needed for clotting are abnormal. The Types of von Willebrand Disease

As with many conditions, there are various forms of vWD:

In type 1, a person has less von Willebrand factor in the blood than normal. Although the condition can be made worse by taking aspirin and other nonsteroidal anti-inflammatory drugs (these drugs can block blood from clotting), the symptoms might be so mild that the person isn't ever diagnosed. People with type 1 vWD usually don't bleed spontaneously, but they can have significant bleeding with injuries, surgery, or when they have a tooth pulled. Type 1 is the most common and the mildest form of vWD.

What Causes It?

vWD is a genetic disorder that is passed from parent to child. The child of a man or a woman with vWD has a 50% chance of getting the gene for the condition. In types 1 and 2, a child has inherited the gene from one parent. In type 3, the child has inherited genes for the disease from both parents.

Signs and Symptoms

The symptoms of von Willebrand disease may include:

* bruising easily
* unusually heavy periods or other abnormal menstrual bleeding in girls
* bleeding from the gums, nose, and lining of the intestines
* prolonged oozing of blood from cuts or bleeding too much or for too long after a tooth is pulled or tonsils are removed

Diagnosis and Treatment

Because its symptoms can be mild, vWD can be difficult to diagnose. In addition to doing a physical examination, the doctor will ask you about any concerns and symptoms you have, your past health, your family's health, any medications you're taking, any allergies you may have, and other issues, such as bleeding problems in other family members. This is called the medical history.

A number of lab tests may be done to diagnose the condition and to determine the specific type of von Willebrand disease the person has. These may include blood-clotting tests, such as bleeding time, and measurements of levels or function of von Willebrand factor, factor VIII, or platelets. Sometimes tests need to be done more than once because a person's levels may change over time.

For many teens with vWD, the condition doesn't require big lifestyle changes. Teens with more severe vWD should avoid unnecessary trauma, including contact sports like football and hockey, but other sports and activities are usually OK. If bleeding does occur, applying pressure to the area may be all that's needed. If the person gets a nosebleed, he or she should put pressure on the bridge of the nose to help stop the bleeding. Girls with vWD who have started their periods might want to carry extra pads or even a change of clothes in case of accidents. Sometimes, the doctor may prescribe birth control pills to help control heavy menstrual bleeding.

If these measures aren't enough to prevent or control bleeding problems, additional types of treatment may be needed. The most common treatment used for type 1 von Willebrand disease is a drug known as desmopressin. This medication causes a temporary increase in the von Willebrand factor level in the person's blood. It can be given by injection or intranasally (into the nose). Desmopressin may or may not be helpful for treating people with type 2 von Willebrand disease.

Patients with type 1 may also need this medication in certain situations, such as after major trauma or major surgery, although they can generally be treated with desmopressin.

Thanks for continuing to keep us all in your thoughts and prayers.

Ancora Imparo



Aaron said...

Hi Marla,

Slow and steady is good. I think there are a few lasting things that I leaned on the two occasions I've had to deal with surgery in my life. The first is that while there may be underlying issues that need to be dealt with, the post op period is primarily one of healing from the trauma of the operation. Its really no different that if one had been in an accident, so I think you are right on in listening to what your body has to say and giving it time to heal.

The other thing I learned is that knowledge is power, and its a lot easier to deal with what we understand. Granted, these may be things we really didn't ever WANT to understand, but hey, here we are so might as well learn. That said, thanks for the info on vWD. I have to admit that I'd never heard of it, so thanks for the interesting and very comprehensive explaination.

Most importantly, its good to hear that you are continuing to heal, continuing to get back to some normalcy, and of course for apparently continuing to play doctor with Mike in the exam room prior to the doctor coming in. :)

Thanks so much for these updates. For all of out here who are worried about you, its very reassuring to read them. So keep going slow and steady, because you are going to win the race!

Aaron W

Marilyn, Fred and Betty said...

Dearest Zack Clan:

What excellent advice about surgery you got from Aaron!

Rx: Rest, Rest, Rest and Laugh, Laugh, Laugh!!!

Love to all.

Marilyn, Fred and Betty

joyce said...

Just checking in with the Zacks to hear more good news about Marla!!
And continuing to send words of encouragement, love and support!!!!
May this 2nd week of May be filled with many reasons to smile and feel good!!!

Big Hugs