This is a long post.

I'm home and resting with my feet up. It was a long emotional week and I am so glad to be home. I did not want to post until I had a chance to really talk things over with Reuben as he was not able to go with me. This was a mutual decision we had made together. 

First of I did not get the results I was anticipating and I'm a bit frustrated. The Drs. at Essentia (my local clinic) wanted me to consider getting another device. Due to my 2 previous infections I said I wanted it done at Mayo if I was going to have one. 

The test results showed my heart to be functioning much better than it feels. they have my Ejection Fraction or heat function or squeeze of the heart at 40% after doing my echo. My EKG was also off and also showed the left bundle block, where to bottom 2 chambers are not beating in sync. This is not a new diagnosis. The Holter Monitor also showed some irregular beats, but it was not enough for the cardiologist to be concerned. The labs that were a little off were due to my medications I take and the Dr. again was not to concerned. 

With that being said, I do not qualify for a defibrillator just a pacemaker, which I was aware of going into this. It's even questionable if I would "need" a pacemaker as I'm on the boarder line of the guidelines  of needing one. With my history of infections this Dr. said in no way would he even consider doing one as my heart is functioning "well" even though it doesn't feel it. This was a cardiologist who had a strong background in EP (Device Dr.) but it is no longer his specialty. I was not able to get into the EP Dr. this visit as they are way booked out. I had went into this anticipating .

He suggested 3 areas of focus for me: lose weight, use my CPAP, and add another medication.  I knew going into this that my weight would be an issue and if he didn't bring it up he wouldn't be doing his job, He did recommend a gastric bypass which I told him I'm not ready to go down that road yet. I told him I'm an emotional eater and I eat out of boredom at my desk for work. I know what needs to be fixed, but not sure how to change or fix my habits and stick to the change. He said this department would be great for helping with that, which it was. He also encouraged exercise, which is difficult when you get really short of breath quickly. He did say that based on the test results I can push my heart harder than I had been. 

He believes that my CHF (congestive heart failure) was caused by my uncontrolled sleep apnea, but I'm not sold on it. I do believe it may have contributed to it, but not sure about caused it. I did an over night pulse oximetry (oxygen level) and even though I didn't sleep well, he said it did work to keep the apnea at bay. I have not been using it, but will need to make sure I am for now on. He believes that these 2 things alone will make my heart function better.

He did also recommend adding another medication. I do not remember the name of it, but it's a diabetic medication that they are using for CHF even though it is not approved for this by the FDA yet. It's in the works. I do believe this is a newer medication as my local Dr. gave me a co-payment card for it which means there isn't a generic yet. This medication is supposed to make you urinate glucose, which for some reason makes you live longer. It does not improve heart function. I do not have diabetes and my diabetic numbers were good. As you seen above, some of my labs were a little off due to the medications I currently take.  I'm struggling with adding another "newer" med as they may not know the full long term side affects and that would be another medication that is hard on the kidneys. I wouldn't be as concerned if I were a lot older, but how long will it be before they have to add medications to deal with the negative side affects of the current medications. The Drs. rarely talk about the long term side affects of any of these meds or "there aren't any" when I have asked. 

I did meet with the Dietician in the gastric bypass department and was pleasantly surprised. It wasn't about eat this or don't eat that. We strictly talked about eating behaviors. This is the first time this has ever been addressed with me. We did talk about figuring out what emotions trigger my emotional  eating so we can figure out how to disconnect it.  We also talked about my eating habits at my work desk. She really encouraged me to focus on the small victories and only focusing on 1 change at a time until it became a natural habit. Before I left I had 1 doable change and a step by step plan to make it work. 

My last apt was with Infectious Disease (ID). I almost cancelled this apt after I was told not to go for a device. I am so glad I didn't. He explained the different type of type of Staph infections and how they work. He could not find the my blood cultures, but I knew the antibiotic used so he was able to figure it out. The bad news is I had the aggressive type of Staph. (most of us carry both) We believe that due to my skin condition I have the aggressive Staph all over my body. Most people it's just in places like the nose, ears and places that are more moist. He was surprised that is was just in my blood and not the device the first time, and the 2nd time it was just on one wire. He said that was a bit odd. (go figure) When I asked him about options for future surgeries he said any surgery or cutting open my skin will be a "huge" risk of infection. Putting in any type of plastic/metal or any other material in my body leaves me at "extreme" risk of another infections as Staph likes to attach to it and when it attaches to it you cant get it off, it has to be removed. He did say in my case he would consider using a long term antibiotic, 3-6 months. Antibiotics have their own side affects and he did mention that right away. Also there is no guarantee after the antibiotics are done that I wont get another infection.  If I ever need another surgery, I will have to proceed with extreme caution. This is discouraging, but I'm glad to have this information on this side of things.  He explained things in ways that I could understand and I have way more knowledge about Staph than I ever thought I could know.

I'm still digesting all of this information and will be for a while. I was impressed with how the Drs. explained things and took time to make sure I understood what was going on. All of the staff was amazing especially when I kept changing my appointments due to insurance and travel issues. They had information desks in every building and people available to answer questions as the buildings can be confusing at first. I was impressed with the customer service in every way possible, especially the cafeteria. 

The buildings at Mayo are stunningly beautiful. I was in constant awe of the marble everywhere. They had amazing glass blown artwork all over in the main building I was it. I'm glad I went and gained the knowledge I gained. I'm also glad to be back home. Isaiah woke me up this morning as I had told him I had gotten him a stuffed animal and he couldn't wait till I got out of bed. I didn't get home till about 2am due to my flight being delayed so I was not going to get up early.  This was an extremely hard week emotionally. I'm glad to be home and have Reuben's arms around me reassuring me that I'll be okay. 

I can not thank you enough for your prayers and encouragement. You have no idea how much it means to me. And a special thank you to those who I reached out to vent to or helped me in other ways. You know who you are. Thank you all again. :)

Laura