May Update 2015

Living On Oxygen for Life

You may have heard of all the rain Texas has been getting over, what seems like, the longest month of May in history. Even my garden plants have developed a fungus on the leaves. I’m hoping I can salvage the vegetable garden I’ve put a lot of work on.

It’s been extremely humid here and that has taken a huge toll on my breathing and energy level… not to mention triggering a number of migraines. When I get this way, I tend to get in a funk. I hate funks! So, if you’ve noticed me being pretty quiet on my blog lately, that’s why. I was getting a bit of the funk. Even the kitchen reno has taken a pause. Yikes! That’s scary!

But slowly I’m coming back around… that fun, personable, groovy self that you all know and look forward to hearing from, right? haha!

On May 22, 2015, I had my Pulmonary Hypertension appointment where I was hoodwinked into doing a 6 – minute walk. Darn those doctors!!!! I have no idea how far I walked. I forgot to ask. I walked with 6 LPM of oxygen and still felt really winded. Oh well.. better luck next time, right? I don’t pay much attention to the results anyway. They are way too easy to skew the results. hehe! Even K thinks so. We had a fun discussion about that.

After the PH appointment, I had my CT Scan on my heart. It was to measure my ascending aorta (my aorta aneurysm — it sounds more dramatic saying aorta aneurysm!). My Cardiologist measured it with a Echocardiogram at 5.1cm late last month, which TOTALLY freaked me out. At 5.5cm, he would order a stint. But, he wanted the CT done because my heart is positioned in a way that it’s difficult to measure.

I have to tell you that I was pretty stressed over it. I wanted to know the size of it, right NOW! Luckily, with a bunch of people thinking about and praying for me, all has ended much better that I could hope for. Thank you so so so much, y’all! Much love to you! The CT Scan came back with the measurement of 4.3cm which is significantly lower but still considered dilated. My Cardiologist will continue to monitor it annually or semi-annually. It’s just so weird because I don’t have a reason for this aneurysm to happen.

I did get to go to Oklahoma to see my niece in her first ever dance recital and on the way (I drove alone!), I nearly had ANOTHER blowout with a tire that looked almost brand new. I had to pull off the highway because my van was making a really weird noise. When I looked, I couldn’t see the missing tread because it must have been on the bottom of the tire. That’s got to be Murphy’s Law! Thankfully, I was very close to my sister’s house and my brother-in-law handled it from there. This is a prime example of why we have AAA.com.

May has been a very trying time interspersed with a bit of joy. Just when we thought everything was going well in the beginning of the month, our heat pump (a/c) died and we had to get it replaced. That was NO FUN! But I did set up a donation GoFundMe account so that I can continue to create and send FREE of all charges crocheted afghans and lapghans to those who have breathing problems. This project has been so important to me. I recently sent out an afghan this month and will be sending out a few more within the next couple of weeks. It really keeps me busy and makes me feel happy to spread joy and comfort to those who need a hug and reminded that we all care about what they are going through. I want them to know that they’re not alone. So check out the Need a Hug tab above to see how you can qualify to receive a special made afghan/lapghan. Or, if you can spread the word about donating to this great cause, please do! www.gofundme.com/HelpNeedaHug. I keep this page updated as much as possible.

Have a great day everyone!

We bring you a Medical Update…

Living On Oxygen for Life

IMG_3990 Oh the joys of hospital gowns. I never have been given a gown that actually fits. They’re sizes range from Large to Extra Large. Yeah, I asked. A lot of times I can just wrap the gown around my front, back and then to front again to tie it. However, the gown I got today was the kind that had short ties. So no wrap-around action for me and of course the opening had to be in front. What a fashion statement I made today!

Today’s appointment was with my cardiologist who I’ve seen for the past 20+ years. He’s AWESOME! He always asks me how I’m doing, what I’ve been up to, and if I’m still doing whatever it was that I was doing the last time I saw him which was a year ago. After all the pleasantries were out of the way, we started in with my questions. First I asked him what he has diagnosed my cardiac problems to be. His answer was, “Which one?” Haha! We laughed. Nothing with my health problems is ever easy or simple. In fact, my body is very complex. One organ’s problems affects another organ’s problems and etc.. It’s very frustrating because my body doesn’t want to do what doctors seem to think it should do. I think there’s a Murphy’s Law for that somewhere.

My Cardiologist told me that I have Supraventricular Arrythmias as well as Ventricular Arrythmias and when I first went to see him 20+ years ago, I had premature ventricular contractions really badly. Thus, the reason why I’m on Cordarone because it was the only medicine at the time that didn’t cripple my breathing ability. Now that we got that straightened out, I told him what the Cardiac Electrophysiologist (maybe I got that backwards) that my Cardiologist sent me to suggested Tikosyn for my heart problems. You see, I was looking for a replacement for Cordarone. Being on Cordarone is not a very safe thing for my body. It can lead to Thyroid problems as well as scarring of the lungs which is called Pulmonary Fibrosis. Tikosyn is used for both A-fib and my problems. However, after reading about Tikosyn, I felt the risks of taking Tikosyn for my actual cardiac problems were too high to make me comfortable to trying it. Beside, you have to stay in the hospital for 3 days to start Tikosyn. So, my Cardiologist and I are in agreement for me to stay on Cordarone, since I have yet to have any problems relating to Cordarone in 20 years.

Now wait a minute, you say. Don’t the PH doctors think this current thyroid problem that I currently have occurred because of Cordarone? Funny that you asked that because I brought this up with my Cardiologist. I explained what happened when I tried Opsumit for 3 months last year which ended with me being hospitalized for 3 days. I told him how I was diagnosed with Hyperthyroid and that the PH doctors were saying it was only because of me taking Cordarone. They wanted me off of it. I told my Cardiologist the status of my thyroid now that I’m slowly decreasing the thyroid medicine I’m taking. His thoughts are that it could’ve been Opsumit interacting with the Cordarone. It wasn’t technically Cordarone giving me thyroid problems, it could be that Opsumit in conjunction with Cordarone, triggered a thyroid problem in me. It actually makes sense to me!

According to the ECHO I did today, my heart looks good, pressures ok, blood flow is good. Then there is the not-so-good news. My aorta. For some mysterious reason, my aorta measured at 5.1cm. I don’t have high blood pressure. So who knows why this is occurring. Now I have to go get a CT Scan to more accurately measure my ascending aorta. My Cardiologist says that if it gets to 5.5cm, he will want me to go to the hospital where my PH doctors are so that I can get medical intervention. Sounds like some sort of surgery to me. *pout* He said that there are ways to not have to cut me open to put in a stint. I’m not sure if that’s makes me feel more reassured or not. Either way, it’s gonna hurt somehow. haha! I shouldn’t put the cart before the mule, so to speak. Why worry over it too much. I’ll wait to see what the CT Scan says first.

I’m just a little disgusted with not getting a clean bill of health with my heart today. It’s always hard for me when new things pop up unexpectedly with my health. It takes me a couple of days to accept the news and to begin to move forward again. I did show him a copy of my heart cath that I had last December. He thought it looked great! Hooray! Sometimes I feel like my PH doctors are all about doom and gloom. It’s nice to get a little optimism from my cardiologist!

I hope you enjoyed this Medical Update! *wink*

Stay in touch and be well. *HUGS*