Autumn....mmmm

Autumn has definitely arrived here, how do I know? Here are a few things:

1. Cold nights, warm days. Although it was 22 degrees at our home when I left for work this morning. (Note: snow is in the forecast for tonight/tomorrow.)
   
2. The leaves are turning beautiful colors and gentling falling from the trees -- onto the ground - where I have to rake them thirty times before I get them all.
3. I have to scrape my windshield in the morning.
4. I have to wear a jacket not just in the morning but in the afternoons as well.
   
5. I am driving to work in the dark.
   

I normally love autumn - all of the things I've listed usually make me happy (well, except the driving to work in the dark). But this year, I just want to go to bed and sleep until April. After last winter, I am afraid of what mother nature might have in store for us this winter. More feet of snow - stronger winds - colder temperatures? Who knows but I do know I am not looking forward to this winter - not one bit.

On a brighter note, we visited the new dil & grandkids last weekend - had a fabulous time. They are all wonderful & sweet & loving our son sooooo much. It appears the Army son's deployment is nearly over. The dil was advised to stop sending packages as of the 15th of this month - that usually happens a month before they start sending them home. This is bittersweet as it could mean a "stop loss" situation in 2010 - just before he's slated to be discharged. So please keep him & his young family in your prayers and hopefully when he comes home this time, it will be for good. But keep those prayers coming for his safety as well - he's been doing several missions that have been a few days in duration, so we always worry while he's out of touch.

Also, while in southern Idaho last weekend we attended an Alpha-1 Education Day. Learned some more about the lungs & how Alpha-1 interferes with lung health. We also learned to play the harmonica - it's actually a form of respiratory therapy - helps you breath better and from the diaphragm instead of using the shoulder muscles. Was amazing...and fun! We'll have pictures on the Idaho Alpha-1 site (see sidebar) soon - so check them out.

Speaking of Alpha-1, the dh is doing well. He got sick in August but immediately went to the doctor who gave him antibiotics and a different type of prednisone - kicked it in just days. Thankfully it only got as far as his bronchial tubes before getting zapped! We still do his treatments weekly and he is holding his own. The last lung function test was just slightly better than it had been - but basically staying steady. When speaking of lungs, staying the same is as good as it gets!

Until next time, please keep the Army son in your prayers as well as his family. We've added all of you to our prayers. And here's to a short, dry winter -- we missed spring this year all together! And don't forget to VOTE....it's not just a responsibility, it's a privilege.

Testing for Breathing

Most of us don't even have to think about breathing - it's an involuntary action. However, individuals that have breathing issues (COPD, asthma) actually think about breathing in and out (including using the pursed lip method when having difficulties) every single day. My dh recently was sent to a different hospital for a PFT (basically a breathing test). We received his results this past weekend and the numbers had fallen dramatically over the winter. I was scared to death. Thankfully we're going to see his lung/Alpha-1 specialist in Redmond, WA in April so we'll see how those tests come out. So many things can play into the numbers - pollution, other environments (perfumes, candles, other scents) - so I am going to stop worrying.

My father-in-law passed away last year - nearly a year ago now - and my mil is doing well. I feel her pain as my fil was a wonderful man & I miss him dearly; however, I only knew him for 7 years. They were married 40 years! I can't imagine how much she misses him. But I'm learning from her strength & her candor about how she is feeling. I'm so afraid that I'll have to deal with the same kind of loss - I only hope that the dh & I have at least 33 more years of wedded bliss ahead of us! He's such a big part of my life.

Army son is well - have talked to him several times online. He's been out on missions - multiple day missions - so definitely keep him in your prayers. I know that the prayers and the angels that are watching over him are keeping him safe. This may not be his last deployment before he is discharged - he may have to go back for a 3rd time. Not real happy about that but nothing can be done. We sure could use his help on the ranch sooner rather than later!

Until next time....

New Lung Doctor (part II)

My dh has an appointment with the new lung specialist around the middle of September. I will give ya'll an update then but I really think this is going to work so much better. He's willing to see Ken once a year with a phone consult & local testing done at the 6 month point. We're very excited! Finally, someone who really understands. More on that in September after the appointment.

BTW, my dh is doing well - this time of year is hard for him as he's allergic to grasses, hay, and hay dust (we live in the country with hay fields all around us). He's had a little congestion but it only lasts for a few hours and then he's fine. I really think the augmentation treatments are doing him a lot of good. AND we both donated blood for the DNA Bank (Dr. Brantley, UF) - got our "results" back last week. Obviously, my dh is ZZ (confirmed) - but his levels of antitrypsin are one range higher than the ZZ (full-blown Alpha-1 for those who don't know) usually indicates. That and his continued good health is all the proof I need!! I had my blood tested too - just to make sure - and I am an MM (normal, as far as antitrypsin levels anyway). But my blood can still be helpful in their research - I really hope it makes a difference. I'll add that link in future posts - if I can remember. Until next time.....

New Lung Doctor

After much discussion and research and advice - my dh should have a new lung specialist (actually a real Alpha doctor!!) this week as well as an initial appointment with him. He is on the Washington coast (about a 6 hour drive one-way) but we believe it will be well worth the effort. He is willing to work with our primary care physician, discuss options (including, when the time is right, transplantation), and be a willing part of our Alpha-1 medical team! We are encouraged and excited to have a new member to our team.

One word of advice for anyone - if your doctor (specialist or not) doesn't meet your criteria for a good doctor - fire them and find a new one. There are far too many doctors out there to stay with one that makes you uncomfortable or doesn't seem to care. Your insurance company or support network (our's was the Alpha-1 network) to find ones in your area and then research them before even calling to set up an appointment. This is important! Don't just leave it to chance!

Have a great week.

The Journey Continues

August 2006 my dh started having a weekly infusion. It started with home health nurses coming to our home weekly to give his infusions via IV. My dh has veins that aren't easy to access so the nurses would put in his IV in his hand - which is quite painful in & of itself. After dealing with the IV needles & home health nurses & taking every Friday off for months so I could be there & reconstitute the drugs for the infusion; dh finally had a port installed.

We were finally able to completely do his infusions on our own! It was wonderful that we didn't have to schedule around nurses, emergencies, etc. I quickly learned how to sterilize my hands and then sterilize the area around the port before inserting the huber needle with supervision from the home health nurse. The first time I inserted the needle I had the expert guidance of Deb, our favorite home health nurse. She guided my hand and showed me how much pressure (quite a lot actually) I had to apply to get it through the skin and the port cushion.

Our life became remarkably "easier" at this point. We could take the drugs and the medical supplies with us when we travelled. Family & friends were not one bit taken aback when we asked if we could do the infusion at their kitchen table! They all have been very supportive of us both. My dh has been marvelous - he doesn't complain even when I push the needle in too slowly and it pinches him. The other day, we both had colds/allergies and weren't feeling well but we tried to do his infusion anyway. I scrubbed up & had the surgical mask on through the entire process. I sterilize the port area and tried twice to access the port - both times the needle bounced off the edge of the port (which isn't real comfortable). We decided to scrub it for that day. We tried again a few days later and were totally successful. Stuff happens and we try not to let it bother us too much.

The next installment will be a summary of all of the wonderful people we've met over the past year - the great friendships, the super flow of information, and the caring individuals that are involved in the Alpha-1 community. See you then!

To Begin...

My dh & I have been married for 6 wonderful years (together for 7 years) and we're still as happy as the day we wed. I know that sounds corny but after the past year, it's truly a blessing to be able to say that.

A little over a year ago my dh was diagnosed with genetic emphysema - caused by Alpha-1 Antitrypsin Deficiency. The allergist that ordered the simple blood test didn't settle for the simply explanation that my dh smoked and now had emphysema at such a young age. His hunch was right and he was the one that broke the news to my husband. However, he didn't know a lot about it so his explanation of what it was was a bit off, to say the least.

We researched this condition and by the time we went to the lung specialist, we were fairly well-versed in A1AD so had many questions for him. Again, the lung specialist had a couple of Alpha-1 patients but wasn't that well informed. But he did know enough to recommend that dh start on a treatment that might or might not help keep his lungs in working order a bit longer. He called it a "feel good" drug as he said there were no solid research studies showing that it worked; however, it was all that was available to treat Alpha-1 so the FDA approved it (sympathy drug??).

This was how it all began for us last year. More on the interesting journey we've been on and continue to participate in.