Living with Congestive Heart Failure

Both of my parents passed away of Congestive Heart Failure, my mom almost three years ago and my dad almost four months ago. So, I guess you could say it runs in the family. I never thought in a million years that I would be diagnosed with Congestive Heart Failure, but I was. It will be ten years on November 21 of this year. It was interesting how I was diagnosed. I had routinely been giving blood at the local American Red Cross and the nurse noticed an irregular heartbeat when taking my pulse. She said, "has anyone ever told you that?" I was like, "no, I don't think so." Around this same time, I noticed that I was having shortness of breath, but attributed that to possibly walking too fast during my daily walks. I reached out to my regular doctor, told her my concerns and she ordered a stress test. It involves walking/running on a treadmill. When I had my appointment at the local hospital, they had to stop my stress test because I was breathing really, really hard. The technician stopped the test immediately, because of that. I started to get a little concerned, when they said, "hey, do you have time for a cardiac catherization?" I was like, "let me check with my husband, he's expecting me back home soon." Once I called my husband (he was watching the kids) and told him what was going on, he told me to go ahead and do the cardiac catherization since they had an open appointment. Okay, now I'm going to get a little graphic here. They put you flat on your back and put a catheter through your groin and up into the heart to see what the heck is going on. I was pretty chill, because I was positive they would just tell me I was stressed out (2011, up until that point was an extremely stressful year). After the cardiac catherization, I had to rest a bit. I will never forget what the cardiologist told me when he came in the room to tell me the results. He said, "Mrs. Blatnik, you have Congestive Heart Failure." Pardon me?? The next question immediately out of my mouth was, "so, what is the worst case scenario?" His matter-of-fact response was, "heart transplant." It was at about this point, I began to feel like I was in a really bad dream. Shortly, after the cardiologist left, my husband, Lauren and Dominic came into the room. I think they were all surprised that what was supposed to be a stress test, ending up with me lying in a hospital bed!! Shortly after my family visited and left, my blood pressure took a dangerous turn. I remember feeling a little dizzy and me pushing the button for the nurse, because I was thinking something odd was going on. The next thing I know, a bunch of doctors and nurses ran into the room, trying to get my blood pressure stabilized. It was like 30/10 or something around there. I think they gave me a medication to bring it back up (I don't remember) and I started to feel better and my blood pressure went back up. I was kept overnight in the hospital, because of that little episode and I went home the next day. All I kept thinking in my head was that I would need a heart transplant and/or be hooked up to an oxygen tank for the rest of my life, I was just 48 at the time. Luckily, the cardiologist has me on a "cocktail" of medications that keep everything in check. I make sure to NEVER miss the medications and I go yearly to the cardiologist. When I tell people that I have Congestive Heart Failure, typically a look of shock is next. Once I tell them it is managed mostly by medications, I see them relax. I have an echocardiogram coming up on September 27. Since my dad's passing in December of 2020, I definitely have been thinking more about my own diagnosis of Congestive Heart Failure. What if that nurse hadn't noticed my irregular heartbeat that day in 2011 when I donated blood? She literally saved my life. I like to think she was my "guardian angel," because I only saw her that one time and never again. Neither of my parent's Congestive Heart Failure diagnoses came soon enough for them to be treated for it. I am very blessed that I was and I don't ever take a day for granted.

Those "Steps" to Independence Can Be Hard

We are heading towards 600 orders for Dominic's business. Since our long-term goal for Baked Goods By Dominic is having a "brick-and-mortar" and hire those with disabilities, it is essential and imperative that I continue to teach him all parts of the business. Since I prompted Dominic for so many years for speech, he has become "prompt dependent." What that essentially means is that he will look at me for a prompt, like, "what do you do next?" I do that one a lot. Dominic has been going to a private speech therapist for over ten years and she reminds me often that Dominic usually will know the answer, if I am patient and wait for him. That has been a very hard habit to break! Dominic has an incredible memory, so I put it to the test this morning. I didn't write out the steps, I wanted to see how much he could do completely on his own. We have a customer picking up his order today, but the only thing that had been done is putting the cookies into t...

Why We Pursued Guardianship of our Son with Autism

Last Thursday morning, my husband, Dominic and I went to our county's Probate Court and had Dominic's Guardianship Hearing. My husband and I are Co-Guardians, and we were granted "Partial Guardianship," which means Dominic can make some of his own decisions (future educational and vocational placement options, what to wear and how he wants to spend his free time), but my husband and I will make his medical, health care, legal, contractual and major financial decisions. The subject of Guardianship in the disability "world" has been and continues to be a controversial and divisive topic. I was a panelist for an Autism Conference this past summer and presented on what it's like to have a child with Autism. Towards the end of my presentation, I mentioned that Dominic had just turned 18 and that we were going through the Guardianship process. When the attendees could ask questions, the first person that went up to the microphone started telling me that I was...

Presume Competence

Since we have traveled outside of the United States since Dominic was very small, we have had to get him a Children's Passport every five years. Since his current one expires in February of 2024 and he is now 19, we had to apply for an Adult Passport. I don't know why my husband and I picked Dominic's first day of school and Michigan State University moving in their students, but the appointment was yesterady at 3 p.m. We had gathered all of the documents needed and then went into a special room in the East Lansing Post Office just for Passports. The three of us sat down and the clerk asked Dominic his age. He said, "19." Since we were also getting his picture taken for the Passport, he went into a separate room, where she took a picture of him and then let him look at it to make sure he liked it (it will be his picture for the next 10 years)! He said he did, so he sat back down with us. The clerk filled out a bit more of the paperwork and then she let Dominic s...

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