Dena Miller's Blog

Sweet 16

Dena Miller — Sun, 10 Jan 2010 07:18:35 +0000

I can’t believe my baby is SIXTEEN!!! Her 16th birthday has been bittersweet for me. I can’t help but think of my 16th birthday…I got a car, started my first job a month later, and 2 months after that I had a REAL boyfriend. Turning 16 was a HUGE milestone for me. It makes me sad that it’s not that way for my daughter. That turning 16 was just another year older for her. She can’t get a drivers license, she doesn’t have driving to look forward to, I’m not sure what kind of job she would be able to get, and there are no boys calling. It’s really hard when she says “it’s not fair I can’t do what other kids can do”. There’s not much I can say to that because I agree with her….it’s NOT fair, and that’s what I tell her…but that doesn’t help her. She’s missing out on SO much and it makes my heart ache. I want to make everything alright for her and I can’t and that is such a helpless feeling. I just tell her that she’s special and God has other plans for her, but again…that doesn’t do much good when your watching everyone around you driving to school, going out on dates, and working. She is SO sweet, caring, loving and SO SO sensitive (complete opposite of me), and she gets more insecure every day because of her disability and the limitations it puts on her. I don’t know what to do…I wish someone would tell me what to do.

Anyhow…enough of that…the one thing I could do was make her 16th birthday something to remember…and I think I achieved that. I threw her a surprise birthday party today. Her birthday was 12/30, but I waited a couple of weeks before I had it so she would be surprised….and she definately was. I think she was pretty happy with it…if she wasn’t…she fooled me. Here’s the pictures from it:

Christmas 2009

Dena Miller — Sun, 10 Jan 2010 07:15:07 +0000

Pulmonary Langerhans Cell Histiocytosis…PLCH for short

Dena Miller — Wed, 09 Dec 2009 21:02:46 +0000

What is that you ask? It’s my diagnosis from the surgical lung biopsy I had October 26th. I don’t have much information on it except that I need to quit smoking ASAP and it’s not LAM Disease….so praise God for that!! As most of you know I have struggled with smoking for the past year and trying to quit. Now that someone is telling me I HAVE to…it’s even harder. It was a little easier when it was my own idea. However, I did go to the OBGYN today and I asked her if she could prescribe something to help, so she’s but me on Wellbutrin…I’m really hoping it does the trick and I never want a cigarette again…but I don’t think that’s very realistic. However….now my life depends on it. I go see Dr. Sinclair the second week of January, so I’ll find out then more about the disease and what I can expect in the future and hopefully we’ll be able to discuss a treatment plan.

I have been extremely busy the past couple of weeks with getting the house ready for Christmas, Thanksgiving, shopping, wrapping presents, etc. Really nothing beyond the normal has been going on around here. Eddie’s good, I’m good and the kids are doing really well. Both of them are making the Honor Roll in school and of course looking forward to Christmas and getting out of school for 3 weeks. I have the best kids in the world. They are so great and so sweet….I am truly blessed.

As you can tell I don’t get on here much, so if I don’t get back on before Christmas….I wish you all a very MERRY CHRISTMAS….be safe and enjoy your family and friends…we are never promised tomorrow. And please remember the reason for the season…the birth of Jesus!

LAM Update

Dena Miller — Thu, 01 Oct 2009 15:22:28 +0000

I’m SO discouraged! So I go to see Dr. Sinclair yesterday about the LAM Disease and to get my pulmonary function tests results. My test results came back REALLY good, which means that if I DO have LAM Disease it hasn’t started to affect my lung function yet. However, I didn’t find out for sure if I have it or not. Turns out the only way to tell is by a lung sample. Obviously from my last lung biopsy that isn’t something I wanna have to do again. However, this time instead of me being awake and feeling all the pain, they are going to do what’s called a video assisted lung biopsy. I will be sedated, which is awesome, however they’ll have to make three incisions…one for the video scope and the others for the instrument insertion and then they’ll grab a “chunk” of my lung and it’ll be biopsied. The down side is that it’ll require hospitalization and 2 -3 days in the hospital and then of course there’s all the risks involved anytime your put to sleep and have surgery. SO…I go to a Thoratic Surgeon on October 8th to discuss this and schedule the surgery. HOwever, I’m pretty optimistic about it. I just “feel” that I DON’T have it. I don’t know if that’s just God giving me the peace I need to get through all this or not, but I’ll take it whatever. I’ll just be glad when it’s over and I know one way or another and I can get over all these medical appointments, unanswered questions and stress.

Peace’s Presence – Thomas A. Kempis

Dena Miller — Wed, 30 Sep 2009 17:59:32 +0000

God’s peace is with the humble and meek of heart; your peace will be found in much patience. IF you hear Christ and follow His voice, you will be able to enjoy much peace.

First, watch yourself in all things, in what you do and what you say. Direct your every intention toward pleasing God alone, and desire nothing outside of God. Do not be quick to judge the deeds and words of otheres, and do not entangle yourself in affairs that are not your own. Thus, it will come about that you will be disturbed little and seldom.

Then realize that the lack of conflict is not the presence of peace. Do not think that you have found true peace if you feel no depression, or that all is well because you suffer no opposition. Do not think that all is perfect if everything happens just as you wish. And do not imagine yourself great or consider yourself especially beloved if you are filled with great love and sweetness. For the progress and perfection of a Christian does not consist in a life of ease.

Instead, spiritual growth consists in offering yourself with all your heart to God’s will, not seeking what is yours either in small matters or great ones, either in temporary or eternal things.

In brief, seek to do the will of others rather than your own. Always choose to have less rather than more. Look always for the last place and seek to be beneath all others. Always wish and pray that the will of God be fully carried out in you. Then you will enter into the realm of peace and rest.

Pulmonary Tests

Dena Miller — Wed, 23 Sep 2009 13:48:28 +0000

My pulmonary tests are scheduled for Monday the 28th, then I go back to Dr. Sinclair on the 30th to find out what exactly I have on the 30th. Of course mom and Eddie are going. That gets kinda embarrassing having your WHOLE family go to doctor visits with you, but what can you do?

I haven’t had a cigarette in three days. I thought it would be harder to quit with me being home and not having work to occupy my thoughts, but it’s been quite easy to be honest. I guess I shouldn’t be surprised since I was able to quit for three months and not have a single problem…I guess this time I just thought it’d be harder.

Terra’s doing good in school, she’s really liking high school which is wonderful. She’s in choir and they’re having a choir concert on October 12th. Grey’s doing good in school so far as well. He’s playing football for the school and actually getting to play! Eddie’s still lovin his job and he’s making it a point to get home before 6, so we’re all doing okay at the moment!

Not an optimistic doctor appointment yesterday

Dena Miller — Thu, 17 Sep 2009 16:12:55 +0000

Well, I went to the pulmonary doctor yesterday and he THINKS that I have Lymphangioleiomyomatosis. He said he didn’t want to say for certain until he consulted his team of colleagues and I did some pulmonary function testing. SO….I’m waiting on the doctors office to call for that appointment now, and I go back to see him on September 30th where I will hear the verdict and should know something for sure. I asked him to write the name down of what he thought I had because I can by no means say it. He told me not to go looking on the internet until he was certain of my condition…yeah…like I”m going to listen. Anyhow for those of you who are interested….this is what PULMONARY LYMPHANGIOLEIOMYOMATOSIS (LAM) is……

Lymphangioleiomyomatosis is pronounced lim-fan je-o-lio-mi o-ma-to sis. Lymph and angio refer to the lymph and blood vessels. Leiomyomatosis refers to the formation of the bundles of the unusual muscle cells. Lymphangioleiomyomatosis (LAM) is a rare lung disease that was first described in the medical literature by von Stossel in 1937. The disease is characterized by an unusual type of muscle cell that invades the tissue of the lungs, including the airways, and blood and lymph vessels. Over time, these muscle cells form into bundles and grow into the walls of the airways, and blood and lymph vessels, causing them to become obstructed. Although these cells are not considered cancerous, they grow without the usual controls within the lungs. Over time, the muscle cells block the flow of air, blood, and lymph vessels to and from the lungs, preventing the lungs from providing oxygen to the rest of the body. An unusual, frequently asymptomatic, kidney tumor called angiomyolipoma is found in up to 50% of patients with LAM. About 40-50% of female patients with tuberous sclerosis, a genetic disorder, develop a lung disease that is identical to that which occurs in LAM. These patients often have angiomyolipomas of the kidney as well. Although patients with LAM do not develop the central nervous system and skin changes of tuberous sclerosis, the similarities in the lung and kidney manifestations of the two diseases have led some investigators to postulate that they may have common causes. HOW COMMON IS LAM? LAM affects almost exclusively women, usually between the onset of puberty and menopause. Several cases have been reported in older women, but it is not clear when the disease developed in these patients. The precise number of people who have LAM is not known. It also has been suggested that LAM has become more common during the past 5 to 10 years, although it may be that doctors are doing a better job of diagnosing the disease. WHAT ARE THE SYMPTOMS OF LYMPHANGIOLEIOMYOMATOSIS? A common symptom of LAM is shortness of breath (dyspnea) with physical activity. In the early stages of disease, the person with LAM may experience shortness of breath only during strenuous exercise, but as the disease advances, there may be shortness of breath even at rest. Another common symptom is chest pain, and occasionally patients cough up small amounts of blood. The symptoms associated with LAM are caused by the excessive growth of the muscle cells around the airways, and blood and lymph vessels. The excess muscle cells can block the airways, trapping air in the smallest air compartments in the lung (alveoli) and causing the person with LAM to have difficulty moving air out of the lungs. This results in a breakdown of the lung tissue and the formation of small cysts (air filled cavities). Cysts near or on the surface of the lung (blebs) can rupture and, as air leaks from the lung into the chest cavity (pneumothorax), the lung or a part of the lung can collapse, causing pain. If the amount of air that leaks out is small, the lung may seal over the space and re-expand itself. If air continues to leak into the chest cavity, however, it may be necessary to re-expand the collapsed portion of the lung by removing the air that has leaked into the chest cavity. This is an in-patient procedure, done using a tube inserted through the chest wall into the chest cavity. The excessive muscle growth may also block blood vessels in the lung, causing them to become distended with blood and even to rupture. This can result in the patient coughing up blood-stained sputum or blood (hemoptysis). Obstruction of the lymphatic vessels by the excess muscle growth can lead to leakage of fluid into the chest cavity (pleural effusion). The fluid may be straw-colored (lymph), or fat-containing, milky white (chyle), or pinkish-red if it contains blood. A physician can remove some of this fluid with a needle and syringe to determine its composition and origin. If large amounts of fluid accumulate in the chest cavity, it may have to be removed through a tube surgically inserted into the chest. It is estimated that 30 to 50 percent of LAM patients will develop leakage of air into the chest cavity (pneumothorax), and up to 80 percent will have leakage of fluid into the chest cavity (pleural effusions). Coughing up blood-stained sputum or blood (hemoptysis) occurs less frequently. WHAT IS THE COURSE OF LYMPHANGIOLEIOMYOMATOSIS? LAM is generally progressive, leading to increasingly impaired lung function. The rate of development can vary considerably among patients. As the disease advances, there can be more extensive growth of muscle cells throughout the lung and repeated leakage of fluid into the chest cavity (pleural effusions). As an increasing number of cysts are formed, the lung takes on a honeycomb appearance. HOW IS LYMPHANGIOLEIOMYOMATOSIS DIAGNOSED? The diagnosis of LAM can be difficult because many of the early symptoms are similar to those of other lung diseases, such as asthma, emphysema, or bronchitis. Often the person with LAM first goes to the physician complaining of chest pain and shortness of breath that was caused by a pneumothorax. Some patients first consult their physician because of shortness of breath upon exertion. There are a number of tests the physician can do to confirm or rule out the existence of LAM. Chest X-ray: This is a simple procedure that provides a picture of the lungs and other tissue in the chest. The chest x-ray is used to diagnose a pneumothorax or presence of fluid in the chest cavity (pleural effusion). The cysts that are suggestive of LAM can be difficult to see on a routine chest x-ray and this test is often not diagnostic. Pulmonary Function Tests: The patient breathes through a mouthpiece into a machine (spirometer) that measures the volume of air in the lungs, the movement of air into and out of the lungs, and the movement of oxygen from the lungs into the blood. This test can be used to determine the effect that LAM has had on lung performance over time, but cannot be used to make a diagnosis. Blood Tests: The patient’s blood is analyzed to determine whether the lungs are providing an adequate supply of oxygen to the blood. This is also a useful test for following LAM patients. Computed Tomography (CT): This test is the most useful imaging test for diagnosing LAM. The patient lies inside a long, cylindrical structure, and x-ray beams pass through the body from different angles producing multiple images. A computer combines all of these images and provides a multiple two-dimensional picture of the inside of the lungs and chest. This is called a CT scan. On a CT scan, the presence of thin-walled cysts spread relatively uniformly throughout the lungs can indicate LAM. If an angiomyolipoma is also present on the abdominal cuts of the chest CT, the diagnosis of LAM can be made with reasonable certainty. In up to 50% of patients with LAM the finding of an angiomyolipoma on an abdominal CT is diagnostic of LAM. Up to 50% of patients with pulmonary LAM will have this uncommon benign kidney tumor. (Symptoms of LAM such as lung collapse, fluid in the lungs, shortness of breath, and chest pain, can also aid in the diagnosis of LAM without performing an open lung biopsy.) Lung Biopsy: An open lung biopsy should be performed as a last resort to diagnose LAM. In this procedure, a few small pieces of lung tissue are removed through an incision made in the chest wall between the ribs. Another procedure, thoracoscopy, is also being used in some patients to obtain lung tissue. In this procedure, tiny incisions are made in the chest wall and a small lighted tube (endoscope) is inserted so that the interior of the lung can be viewed, and small pieces of tissue are removed. Both procedures must be done in the hospital under general anesthesia. Recovery from an open lung biopsy takes longer than the less invasive but usually completely adequate thoracoscopic procedure. Another technique, called transbronchial biopsy, may also be used to obtain a small amount of lung tissue. A long, narrow, flexible, lighted tube (bronchoscope) is inserted down the windpipe (trachea), and into the lungs. Bits of lung tissue are sampled using a tiny forceps. This procedure is usually done in a hospital on an outpatient basis under local anesthesia. However, the amount of tissue that can be sampled is usually inadequate for diagnostic purposes in LAM. After the lung tissue is removed, it is examined in a pathology laboratory for the presence of the abnormal muscle cells and cystic changes characteristic of LAM. HOW IS LAM TREATED? Because LAM affects almost exclusively women of childbearing age, physicians have thought that the hormone estrogen might be involved in the abnormal muscle cell growth that characterizes the disease, just as it is in the growth of smooth muscle in the uterus in a woman’s childbearing years. Although there is no direct evidence that there is a relationship between estrogen and LAM, the treatment of LAM has focused on reducing the production or effects of estrogen. The response to treatment has been highly individual, and no therapy has been found to be effective for all LAM patients. Treatments vary in effectiveness from patient to patient, and none have yet been scientifically proven. Oxygen therapy may become necessary if the disease continues to worsen and lung function is impaired. Lung transplantation is considered as a last resort. A treatment trial is presently being conducted at the University of Cincinnati using a new drug called rapamycin. In 2005, a second trial called The Sirolimus Multicenter International Lymphangiomyomatosis Efficacy and Safety (SMILES) Trial will be conducted for LAM patients worldwide. WHAT IS THE EFFECT OF LAM ON THE PATIENT’S LIFESTYLE? In the early stages of the disease, most patients can go about their daily activities, including attending school, going to work, and performing common physical activities. In more advanced stages, the patient may have very limited ability to move around and may require oxygen. Patients with LAM should follow the same healthy lifestyle recommended for the general population, including eating a healthy diet, getting as much exercise as they can, as well as plenty of rest, and, of course, not smoking. Traveling to remote areas where medical attention is not readily available or to high altitudes where the blebs can expand and rupture should be considered carefully before undertaking. Some doctors and LAM patients feel that pregnancy accelerates the disease. LAM RESEARCH PROGRAMS Some LAM patients may be eligible to participate in clinical studies at the Warren Grant Magnuson Clinical Center of the National Institutes of Health in Bethesda, Maryland. Participants must meet specific LAM Patient Protocol requirements. INTRAMURAL RESEARCH LAM research is being conducted presently through the Intramural Research Program at the National Heart, Lung, and Blood Institute (NHLBI) at the National Institutes of Health (NIH). The study is headed by Dr. Joel Moss. ORGAN DONATION The LAM Foundation urges you to encourage your family and friends to become organ donors. Remember to (1) sign your donor card and (2) notify your family of your wishes to become a donor, so that precious gifts of life don’t go unused.

YEAH!!! SO PLEASE, PLEASE, PLEASE PRAY FOR ME!

My worst nightmare

Dena Miller — Thu, 27 Aug 2009 00:09:16 +0000

and his name is BILLY!!! I went to pick Terra up from school today and walking along side her is a VERY tall boy….holding her books. He opens the passenger side door and sticks his head and hand in and introduces himself…very politely. He’s just moved here from Virginia and today was his first day of school. Anyhow, after we drove off Terra tells me that he’s her boyfriend. They met in first period and he told her she was cute, then at lunch they sat by each other and “got to know each other”. Anyhow…he came over 30 minutes later, ate dinner with us, and now they’re gone to church together. I’m excited for her and scared at the same time. I remember all too well my first broken heart, and I don’t want my baby to have to experience that. However, I do realize it’s something we’ve all been through. STILL…I’ll have to restrain myself from killing him Of course Terra’s on that natural high of a new boyfriend and I’m scared to death! He’s 17, and I know she’s almost 16, but she just doesn’t look that mature in so many ways….she’s still SO little! Anyhow…here’s their first pictures together. And NO! they are not laying on the bed together, I told them to sit back so I could get their picture.

Update

Dena Miller — Mon, 20 Jul 2009 19:41:57 +0000

I’ve been really bad about keeping up with my blog. July has been a month of numerous doctor appointments for me. I went to the infectious lung doctor since Dr. Robins told me I had Histoplasmosis. Well, turns out that the infectious disease doctor says he doesn’t know how Dr. Robins came to that conclusion because everything he’s received suggests nothing of HIstoplasmosis. Dr. Land said that he’s not sure why Dr. Robins didn’t pursue more testing when the lung biopsy came back inconclusive (which Dr. Robins told me showed Histoplasmosis), but evidently Dr. Robins didn’t want to mess with me and just guessed at a diagnosis. Anyhow, Dr. Land has assured me that he will take care of me and get me to a lung surgeon who won’t just guess at a diagnosis. I’ve been for another Chest x-ray and CT scan. I go back to Dr. Land this Thursday. He said that he will be referring me to another doctor for further testing. Either another lung biopsy or a surgery where they make an incision on my side and go in with a microscope to view the lesions on the lungs. I have to say that this scares the crap out of me. I DO NOT want another lung biopsy. I don’t even think I can force myself to get that done again since the last one was SO painful. I’m sure since my lung collasped the first time that it’d most likely do it again, and it makes me want to cry even thinking I may have to face that again. SO…if I have a choice, I’m picking the surgery where I’m completely knocked out!

I know that God must be looking out for me because there is no way I could’ve held a full time job this summer with all these medical things going on with me. I have thoroughly enjoyed my time off this summer and being able to spend it with Terra. I do have to say though…that I really MISS working and having adult interaction and conversation. My unemployment is still in limbo right now…it hasn’t been approved or declined. They say they are back logged from so many people filing, but my bills are getting behind and it’s really starting to stress me out. I think (depending on the lung thing) when Terra starts school back August 19th, I’m going to start looking harder for a job. I’d really like something that paid good to work part-time. But….with the economy the way it is now days…..your lucky to even have a job at McDonald’s.

Here are some pictures from July 4th. I had my niece Haley and we went swimming and went to Navy Lake in Millington for fireworks. Had a REALLY good time.

Medical Update

Dena Miller — Wed, 24 Jun 2009 21:03:52 +0000

Well, my OBGYN called me yesterday and told me to come in that day to discuss the results she received back from the pathologist. Of couse I did, even though I had plans to take Terra to the movies. Anyhow…turns out I need to have the CKC surgery (Cold Knife Colonsation). We scheduled the surgery for July 17th. It’s an outpatient thing, which is good. She said I wouldn’t be doing anything for a week and the recovery time is 6 weeks. I still haven’t heard anything definite on the lung thing. I went to the infectious Disease doctor this Tuesday and he never received any of my test results from my doctor, so he had me go get ANOTHER chest x-ray and some more blood work and he rescheduled my appointment for July 9th. The way things are going I don’t know what to expect from that. I’m not really worried about it though. No need to worry when there’s nothing I can do about it right?

I have to admit that I’ve enjoyed being off of work the past two weeks. I thought I would be bored out of my mind, but I have managed to stay really busy. I’ve been wondering how the heck I kept up with the house while I was working, since it’s taking me a full day to get it clean now. I guess I’m just cleaning more thoroughly now. I’ve also taken over doing the yard work which is I’ve found that I like. (As long as I get out there early morning and not at the hottest part of the day).

Terra and I went to see The Proposal today at the movie theater…thanks to my mom and free tickets. It was a really cute romantic comedy, so if you like those kinds of movies…it’d be worth going to see.