Category Archives: Heart Healthy Living

SLAP!

That was the sound of reality up against my face.

karen-flower
It was suggested to me that I use my Blog as a place to vent and log the journey I am on. I kind of have already been doing that, but a lot of the time I try to keep it a little upbeat. Not having that many good days, so there may be a lot of whining. Please don’t feel the need to respond to everything, I just need to talk it out.

I spent this past week up at Mayo. I went for my bi-weekly visit. It was a series of UP and DOWNS (note the lack of plurality on the UP). I have been battling some major depression lately, Saturday night was a meltdown of EPIC proportions. Worst one yet. But like all the others before it, I am working to move past it.

UP:

I got the approval from the cardiac surgeon to use my shower bag. Which means I will be able to shower. It won’t be easy and it won’t be often, but it will be!!!

DOWN:

I’ve been feeling sick the last week or so and a CT Scan that they took on Tuesday showed the beginning stages of pneumonia in my lungs. Woohoo.

Had to have (1) weekly blood draw (2) had to get an IV (3) had to have blood drawn to do bacterial cultures. Not a happy camper because I am seriously running out of veins for them to roll and blow.

Had to do a basic Oxygen study overnight Tuesday. Discovered that my oxygen drops down below 60 when I am sleeping and rarely makes it above 82 when I am awake. This lead me to the sleep center where I had to be under direct observation for the night while they did a sleep study. When it was all said and done, they determined I had severe sleep apnea. I stopped breathing and average of 61 times an hour. So I will be going to get fitted for my new CPAP.

And my favorite: Someone actually said what I had not heard directly since this all began. “Karen, the sooner you accept the fact that even with the LVAD, you are in ‘End stage heart failure”, the sooner you can start learning to work on your quality of life.

Well, there you go. I know I am sick, I get it, but to hear someone say so bluntly was devastating all over again.

Journey of the Heart Next Step

ekg-heartWell, it finally happened. On AUgust 7, 2014, I was officially listed on the Heart Transpant list. I did not think it would happen, but it did. I am pretty sure it because of the outpouring of prayers and support.

I feel a bit weird for havig got such good news. Kinda like it isn’t real. Of course, the thought of another surgery brings on a whole new set of problems. But I’m pretty sure we can handle it. I thought I would be happier, more relieved, but I am just a bit numb.

Don’t get me wrong, I am thrilled, but don’t know how to act or what to think.I just thought it would feel different.

My life has become worse than a damn theme park with nothing but roller coasters. I would much prefer a Winnie the Pooh feel, even on a blustery day.

But alas, it is what it is and I am sure once it seeps in, I will be over the moon.

Blinded By My Tears

tears_n_painI have been waiting since December 2013 to have my follow-up heart cath. It has been a grueling wait, and after two postponements (we drove up on Monday for a Tuesday appt. I got in and they could not do the test because no one told me to stop taking one of my meds.) So we came home on Tuesday and drove back on Wednesday for a Thursday test.

We have been so optimistic about the results because I feel better.

Yesterday at Mayo I finally had my right heart cath. The goal was for my lung pressures to be lower. As they were in the beginning, they would not put me on the transplant list because my lungs would ruin a new heart. So they did the test and when it was all said and done, the pressures were down, but not far enough.

It was all I could do not to burst into tears right there on the gurney. My stomach turned over and my mouth went dry. All I could think of was having to live with this damn pump for longer. It is what keeps me alive, literally, and yet it causes me the greatest amount of pain. I’ve started having panic attacks again and I just want my life back.

The doctor tried to cheeer me up and he did his best to keep it positive, but I all I kept hearing was “not low enough.” Still not qualifying for the list is just not an option and I am not sure how to deal with the disappointment.

I am tired of crying.

Hurry Up and Wait

Click to Go Red!

Click to Go Red!

Well, this week is ending on a high note. Oh wait, that’s a scream of frustration. Spoke with my (TC) transplant coordinator this morning and they have changed my Heart Cath test until May 20th. It’s only 3 weeks, but it will seem like forever. I am not very good at patience and this one is really hard.

TC says this is good because they want my knee to be much more healed and me being in better physical condition for the test. I get it, but I am not happy.

This week has been particularly difficult as it has a lot of focus o my mother. The 27th will be one year since she passed. I never would have imagined I would miss her this much. I actually have nightmares about disappointing her and letting her down. Those of you who know us can appreciate the irony in that. I think that the more I talk about her, the less angry I become. So many things I still don’t understand, but I am realizing there isnothing I can do about them now.

Proform Hybrid Trainer

Proform Hybrid Trainer

Finally getting settled in the house. Still somewhat difficult to get around without getting hung up on stuff, but it’s getting easier each day. Yesterday the world’s greatest neighbor came over and helped hubby put together our new Hybrid Trainer. Once the knee is a little better, I will get on that horse and get into shape. I want to make that Mayo Cardio Rehab team proud. And myself.

I can also tell you that it feels great to be back to work. Being able to concentrate a bit more is a good thing. Oh and I watched birds having sex in my back yard…or maybe just fighting…hard to tell. LOL

A Doctor with Ethics?

Support the cause! Click now!

Support the cause!
Click now!

Could it be true? Don’t get me wrong. I have been fairy pleased with my cardio doctors over the past few years. A few complaints, but overall. I do feel like I have made a few trips to the offices for little or no reason. But isn’t that what doctors do?

For the record, I am most pleased with my transplant team at Mayo in Jacksonville.

But since I am back in Orlando I had to make an appointment to see my regular cardio doc. So I make an appointment for today and I am all set to go. Then I get a phone call from the Orlando Heart LVAD center and the gal tells me that my cardio doctor has contacted them and that she is not familiar enough witht the LVAD or comfortable with treating me. She rescheduled my appointment with an LVAD doc in the same building and at the same time. She did this without having me come in to see her and charging me an office visit. I am impressed.

heart-ribbonAs for my fall on Monday night, I have several new lumps and brusies, but nothing serious. I hurt like hell, but don’t seem to have done too much damage to the bad knee. Thank goodness.

Home vs. Home

Randy Travis' LVAD device

Randy Travis’ LVAD device

Well, it has been a long four months, but I am finally home. As some of you know, I had to go up to Jacksonville to the Mayo Clinic to be evaluated for the heart transplant list. I have been initially denied because of the high presures in my lungs, caused by the overexurtion of my barely functioning heart. After some very serious consideration I decided to get an LVAD. Many of you may not know what that is. It is the Left Ventricular Assist Device (Randy Travis and Dick Cheney both received one.) You can see from the links that they were very different devices. Mine is the one that Dick Cheney got.

Dick Cheney LVAD device

Dick Cheney LVAD device

At any rate, after I received the device on Dec. 17, 2013, I had to spend the next 3 1/2 months at the Gabriel House of Care. The people that I met during my stay have touched my life in ways I never could have imagined. I made friends, I mean real friends, who went out of their way to help me, both physically and emotionally. I did my best to return the kindness.

Spending so much time in a single place with the same peple for months, makes them like family. You get used to seeing them every day, talking to them, eating meals with them, and laughing and crying with them. On Thursday I came home–to my physical home. The house we bought in Orlando. I think it might be one of the most difficult things I have done. I had to leave people I came to care about and love to be where I live.

Gabriel House of Care, Mayo Clinic, Jacksonville, FL

Gabriel House of Care, Mayo Clinic, Jacksonville, FL

It has been a very difficult journey, I have spent several days, and nights, in tears, I have also found myself getting reaccustomed to my home. Given my situation, it seems odd to say that home is where the heart is, but it is also very true. Sometimes it is excruciating to have my heart in so many different places.

There are so many people who I met at Gabriel House, but the ones who stand out did remarkable things for me. Thank you, Lavon, Cindy and Dearl, Sandie and John, Sharon and Tonyia, and Mike and Valerie. There are so many others, but I could write all day.

As time goes by I will be lettig you get to know some of the people I have met. You will love them.

And don’t forget, people need you! Become an organ donor. My heart depends on it.

Is this year over yet?

toothWell, this has been a hell of a seven days. Last Thursday I had to go to the oral surgeon and have three teeth pulled. It wasn’t nearly as bad as I thought it would be. The surgeon and his team were awesome, from start to finish. If you are in Orlando and need oral surgery I highly recommend Dr. Scott Farber. They did everything in their power to put hubby and I at ease and when I went in I actually had no anxiety about it. Of course now that the work is done, this shit hurts. No pain pills because of the heart stuff, so I am in a lot of pain. So now I am bruised and suffereing.

12-9-13-karenThen yesterday I went to get my hair cut. I decided that I needed to hve it short for the surgery and recovery since I am going to have trouble maintaining it. Those of you who know me, know how long it took to get my hair long and the troubles I had keeping up with it. I am not going to be able to do that for a while, so I went short. Now, this may sound silly, but other than some breakdowns here and there, I have been okay about the surgery. So I am sitting in the chair yesterday and the little gal pulls myhair up in the rubberband and starts to snip. I teared up, got short of breath, and thought I might slip into a full blown anxiety attack. It was the first time I realized just how much I am giving up to get this LVAD and what it is going to mean. It scared the hell out of me. I managed to simmer down, but it was weird.

boccelliSo then yesterday I had to tell my friend that I could not go see Andrea Boccelli with her. She got wonderful seats and was taking me to cheer me up. I can’t tell you how much I was looking forward to it. I was going to see Boccelli for free. Well, because of the teeth and germs, infections, blah blah blah I am not able to go. I won’t get to see them (Tami, her sweet boy Austin, and Michael who just came home from Japan as a newly promoted Corporal.) This was a once in a lifetime opportunity and this damn heart has taken it away from me. It infuriates me, and makes me too sad.

But, such is life and I will man up and get over it. But it sucks and now I am crying again, so I will close. Not looking for any sympathy here, just needed to vent.