Friday, August 8, 2014

Update August 2014

Well, I guess I should update everyone who might be reading.  My local friend, Amber, is traveling to see Dr. F for a new patient appointment, and Britton decided I should go with her!  I'll be getting my own follow-up appointment as well, in about 3 weeks.  We're both "invalids" but in different ways, have similar schedules and a very similar love of good food.  I can't wait! 

I now have 8 diagnostic high tests.  I have 6 diagnostic 17 hydroxycorticosteroids averaging double the range (but ranging from just decimal points over to three times the high end of normal).  At least these are consistently coming back high, showing there is indeed an issue, but the testing might be a little one-sided for BLA surgery clearance.  I have one diagnostic midnight serum of 8 (in a range to 7.5) and one high 10 hr UFC.  I have a feeling with these he will want me to go on medication for a while, especially since I'm going downhill so quickly with my mobility, etc., but I am STILL really hoping for surgery this fall.

I've had to stop testing to treat my sinus infection.  It is a little overly-attached if you ask me.  I'm on antibiotic #4 now, probably day 50 of antibiotic treatment so far.  It looks to be sphenoid-based, and after this last 30-day stint on med 4 is completed, I'll be getting a CT scan and ENT appointment to see whether it is gone or if I need a procedure to help drain the sphenoid sinus. 

We fly out the week after to see Dr. F.  I am REALLY looking forward to seeing him in person and at the very least, getting a good game plan together, even if it isn't what I am hoping for.  And, I am looking forward to a bit of a break from my day-to-day to spend some time with a friend relaxing, eating good food, and trying not to get too hot in Beverly Hills in August!

Wednesday, August 6, 2014

Pituitary conditions, PNA letter to families and friends

Dear Pituitary Families and Friends,

For your sake and the sake of your loved one, we ask that you take a few minutes to read this article. You may think pituitary patients are difficult and tend to complain a lot, but please let us explain. One of the hardest things for pituitary patients is the fact that there are a lot of unknowns. There are multiple symptoms that may (or may not) occur. The s...ymptoms may subside for a while, only to come back unexpectedly, much worse than before.

Exhaustion, fatigue, weakness in limbs, loss of libido, infertility, headaches, excessive sweating, apathy, anger, rage, depression, mood swings, uncontrollable weight gain, diabetes, and visual disturbances. These are just some of the symptoms of a pituitary disorder. Taken individually, these symptoms can be debilitating, but together they can be devastating. Can you imagine the burden on the patient if they also lose support from the people they depend on the most?

Symptoms such as the ones listed above can adversely affect the family unit. The apathy for example, can make family members feel like the person is disconnected or doesn't care what is happening with everyone else. Because of the disease, the patient may not even recognize that he or she is behaving this way. In addition, anger, depression and uncontrollable rage can also make the family feel like they are under siege: abused, unloved, unappreciated and unneeded. The fact is, this is when pituitary patients need their family the most. It's understandable to want to pull away and retreat emotionally, but that just ends up isolating the patient even more. These are the times that your loved one needs you to stand by him or her and try to understand that the disease is controlling the bad behavior. If your loved one had cancer would you accuse that person of being lazy or making up the symptoms? Of course not, but this happens regularly to pituitary patients. We all know that cancer is a frightening disease that does horrible things to patients. Many people do not know about pituitary/ hormonal disorders and the negative effects it has on a person's everyday life.

In times of crisis, the family dynamics become magnified. Patients dealing with a diagnosis of an unknown intruder in their body need the support and understanding of their family more than ever.

Now imagine that the intruder is unseen (have you ever tried to make sense of those MRIs?) and not clearly definable. When people hear that their loved one has a pituitary tumor, but that it is not cancerous or terminal, they are relieved and think that everything is going to be okay. Unfortunately, what they don't know is that the pituitary issue will affect every aspect of the patient's life, possibly indefinitely.

When people hear about a tumor, they don't think about how it diminishes the patients' mental health, their quality of their life, or their ability to accomplish everyday tasks. Pituitary tumors are usually benign, but they do cause some severe symptoms and they can require a lifetime of treatment and monitoring. Cancer is something that you can fight and BEAT, but for most pituitary patients, the battle goes on and on and on.

Understanding and acceptance truly comes from knowledge. The more you know about the disorder, the better prepared you are to support your loved one through his or her daily struggles. It can be very frustrating to have to care for someone who is ill, to have to pick up the slack with the daily chores they used to be able to do. When a patient is diagnosed with a pituitary or hormonal disorder, it is important that the family comes together to develop a plan of attack. Someone faced with a chronic illness will be able to handle it much better if they have the necessary support. The first and most important thing that any loved one can do is get educated about their loved one's disorder. Read the information contained on our website, purchase our Pituitary Patient Resource Guide, and learn as much as you can from trusted sources. Our information is compiled from the world's renowned experts in pituitary medicine.

The more you are aware of up front, the better equipped you will be to make decisions. Your family will have to make adjustments. This is not going to be easy, but it can be made less stressful. Within the immediate family/household, all roles need to be assessed and redefined if necessary. For example, the person with pituitary disease may not be strong enough to carry out their regular household chores or do the same amount of driving. They may be too scattered to effectively manage the family's finances or schedules. Their emotions may get out of control at home or at work.

If you know going in what changes to expect, they are much easier to accept and adapt to. One thing that is very important to note; if family and friends are not supportive, if they do not believe the patient when he or she reports struggles caused by this disorder, it can exacerbate your loved one's symptoms. The fatigue and strain that they go through will be amplified if they have to justify their symptoms to people. Sometimes people are accusatory and assume that the patient is just lazy. Patients are told that they'd probably feel better if they just ate a little less and exercised a little more. This kind of attitude undermines the patient's treatment. There is a medical explanation for their symptoms and for their inability to live a normal life. It is not just another excuse. They did not choose this illness. They do not want to miss out on family functions; they don't like that they can't do their part. They cannot control their symptoms, so they need your understanding. Thank you for everything that you do to be supportive. The PNA is here to support you in your quest for information. Please contact us with your questions and we will be happy to point you in the right direction.

Message to Pituitary Families
By Tammy Mazzella, Pituitary Network Association