Christopher's Journal

Cathleen Weed  Hi 💛 I had TAVR last August (2015). Long story but anyway you can read about it on my site if it helps, but sounds like it could be med related. Is he on a beta-blocker? He sounds cloudy. I'm very active and I was on a beta blocker leading up to TAVR and after the procedure that former dose was WAY too high and making it hard for me to even keep my eyes open for a few months. When I realized that was the culprit, problem solved. You can get a digital BP cuff to check at home. Most importantly, has he had a follow up visit and a CT scan of the valve? If he is oxygen deprived it could cause these symptoms. He can easily get his O2 saturation checked anywhere. I would start there. Also, any history of Alzheimer's/dementia in the family? With cognitive issues of that sort the short term memory will go first but suddenly long term memories are very clear. Again though, even that can be med related. Does he live alone or is your mom always there? Depression could be an issue if he is thriving in a hospital environment surrounded by caregivers but then deteriorating at home. Severe dehydration can cause his symptoms as well. Certain meds can cause dehydration too (beta-blockers being one). Get him to drink electrolyte water (pedialyte or Gatorade zero) rather than just plain water.
PS I'm also a nurse on top of being a patient ❤️. It's frustrating but it's a process of elimination. Start with the most important thing, the valve, and then work your way though the possibilities one by one. You'll find the answer. He's lucky to have you.

Ed Miskovic  Hi Chris, I'm 70 and had a mini-sternectomy for an aortic valve replacement in early Feb. My activity level had increased steadily, but suddenly when the outside temperature went down to the low 40s, I no longer felt comfortable walking my daily 5k. As the temp lowers to the 30s, walking a mile is no longer a pleasure. This is depressing and I've found it helpful to talk regularly to a Health Psychologist. Actually my wife and I met with him before surgery to sort out feelings and expectations. Preoccupation with the past is something many do when they are seriously ill. I find this ruminating sometimes affects my short term memory simply because I'm not paying attention to what's going on around me. The role of care taker, from what I've seen, is exhausting and grueling. You and your mother are not alone. Many people around you have or are caregivers. Find and talk them. Just talking may help. The best to you and yours.

Ray Farmer  My father had Parkinson's which came with louis bodies, a form of dementia & associated depression. In & out of hospital. What we found was that once home simple things like drinking enough water eating well and taking meds at the right time was key, (but difficult).

Rita Savelis  Surgery can be very hard on older patients (and everyone in fact). Post surgery emotional trauma is common and I feel for your father because he is expected be the same, but he's not. He's been through a difficult experience and it takes time to process that. Depression can happen at anytime and is real and serious. Most people, friends and family, just want patients to be back to normal and get well and so patients don't have outlets to express how they feel. This can be especially difficult for men. I think having to experience heart surgery again, like he did, when he is older, makes it a harder experience. When older, experiences are different. I felt my OHS so much more than I felt my cancer treatment at a younger age.
Meds can affect everyone. Especially betablockers.
I wish I had some good advice for you and your mother who have been through a lot and who care so much for your dad.
You should remain vocal with medical staff and ask for help from them.
It sounds like your father needs to talk about Vietnam and his brother, because he didn't in the past.
Take care.

Christopher Sasso  Hello All,

First of all, thank you for all of your feedback. On top of his TAVR procedure in March he has also had multiple skin surgeries prior to his TAVR surgery that were on his head for Basal Cells (MOHS surgery). It's been a long year for us. I think this started his emotional struggles because it was on his head and face. But thats okay now.

So Yes, he lives with my mother and he is on 8 medications including Beta-Blockers, Statins, lasix, and a variety of other meds. There is no history of Dementia in my family and staying hydrated has been a little bit of an issue that my mother TRIES to stay on top of. He is about 170lbs and his weight has shifted drastically over the last year because the initial valve problem and now the water pills. Prior to surgery he was like 220, but was mostly water because of the valve failure.

She cooks everyday and they eat healthy.

Yes, he has had follow up scans on the Valve and it is working well. During the summer when he was off his original blood thinner and lower lasix, the valve thickened a little and when they put him back on the thinner recently it went back to normal. At St. Francis Hospital on Long Island they saw this as a great finding in their research. First time it happened for them and now they know how to treat it. They are going to put it in their newsletter. Since October he's been in the hospital for a few short stays 3 times. He gets better and goes home. He gets foggy from time to time and this is what worries me. The other thing that bothers me is that he was the type of father that called me everyday and now is content with hanging at home and keeping busy with his Sudoku puzzles and solitaire games and TV. He goes to get the paper and shops with my mother and it seems like he really depends on her now. It's almost like he is scared to be on his own. I know the weather has changed and he doesn't go out as much with his friends like he used to. All summer they went to the park everyday and got breakfast. I initiate conversations with him and everything seems fine, but I guess I'm confused.

He is also on Coumadin now because they saw the valve thicken and gets his blood taken twice a week. Can blood thinners effect him? The doctor reads his blood work and reports that all is good. He has had the same doctor for 18 years so he knows my dad well. He's amazing.

The other weird thing that happened to him and when we started to see his temperament change from his amazing summer was in September he became obsess with his bowel movements and started to drink prune juice and this was the start of the steady decline. He gets anxiety over going to the bathroom. This dehydrated him and is essential why he ended up in the hospital in early October. Weird?

As a family we are leaning toward depression/anxiety, but I don't know.

Yes, I do agree that he needs to talk to someone about the past. But as a side note my father has always been absent minded, and doesn't really pay attention when someone is speaking to him. My mother said he's been like that since he was a teenager when they met. I really feel that these behaviors have been exasperated lately.

Any feedback will help.

This has helped me. Thank you.

Christopher Sasso  One more thing, My father is aware that he is forgetting things, I do not know if this is a good or bad sign. He says he believes it's the medication. HIs recall of information seems to be the most limited. So I am not sure what direction to go.

Thank You

Rita Savelis  I can relate to the idea of being "content with hanging out at home". I never was content with that before surgery...There is something integral that can change after you go through so much anasthesia and so much invasion of your body. An odd fear that lingers and one just wants to feel "safe" whatever that might mean. Also one is usually aware of being forgetful as well and that the mind is somehow different. The awareness doesn't change things, but you know it.
I can relate to all of this and I am "only" 55.
Doctors tend to be happy that your heart is okay. The rest is just side effects to them and not life threatening. It's hard.
I don't think anticoagulants (coumadin) affect your mind. But it's another med to take and meds are a drag, until you get used to them and just forget about all that your body needs to survive.

I wish you guys peace. One day at a time. Getting back to whatever is your "normal" takes time. I wish I had answers. Time and patience work for me. And accepting that one might have a new normal.

Ray Farmer  Very difficult. My father had over 15 meds a day to take 2 or 3 times a day and I'm sure I could see a difference with his memory when some of them changed. It is a juggling act every time a med changes; you need a doctor who is experienced with similar situations. Have you tried a local Vietnam Veterans association, they may provide support, visitors or names of suitable doctors?

We measured a quantity of water in a bottle and got him to drink from that so we could gauge how much water he was drinking each day (and easier for him to handle). We also got him a hot meal delivered at noon every day and they would prompt him with meds (+ electronic devices can help) which gave a routine.

If there is a specific issue with depression he needs to get that diagnosed by a competent person - there may strategies and meds that can help. This getting old business is not fun but there are things you can do although you must not feel its all down to you.

Christopher Sasso  Rita, it's weird because he was going out all the time for a few months before these last few episodes. I am unsure why he got obsessed with his bowel movements which sent his entire mental state and social life out of whack. This is all frustrating and hopefully when he goes to the doctor tomorrow they can modify his meds. When I ask him what is keeping him in and why he doesn't go back to the cardiac rehabilitation center he say he's going to go, but not yet. He really does give me a straight answer and skates around the conversation. Yes, his doctor is happy with his physical state, but I feel they have danced around these mental set backs. I'll report back after I hear from my parents tomorrow.

Ray, In the beginning he was on 15 meds a few times a day also. He seemed like he was in outer space. They modified them and he took off running. Several months later is when he slowed down. He got obsessed with the bathroom and dehydrated himself. This was around the time he stopped calling my brother and I. We didn't think much of it because we just thought he was becoming independent again. But slowly he needed medical attention in regard to his meds and ended up in the hospital because of this.

I am totally confused with this and worried. He always says the same thing about the meds. That they make him feel "dinky dow" which was a term used while he was in the service and means "crazy." I am not sure why he always explains it like this or if there is a connection here to his time spent as a soldier. He just can't explain what he feels. But says physically he is okay and the doctor says the same. In general conversation he is normal. We all watch football on Sunday and text message during the games we watch. This seems to bring him excitement. He loves football.

The last few times he was in the hospital he kept apologizing about being sick and thinks he is bothering everybody in the family. We always tell him he is not, but this has been a struggle for him also. I actually think he doesn't like to tell us the truth because he's worried about our response to his situation. I feel he can't take any more bad news lately. Which is completely understandable.

Thoughts!!!

Thanks again to everybody!

Christopher Sasso  Let me also add which I totally forgot that before surgery my dads Aortic valve was badly failing and he looked terrible leading up to the surgery. He kind of started with memory lapses before the surgery, but now like I explained it is worse. Also, because his valve and heart were weak, they had to do CPR on him twice during the procedure. This was the worst part. I know the lack of oxygen to the brain can cause these problems, but thought I would add this to our discussion.

Ray Farmer  It sounds very much like my father and because your close to him you want to do do the best for him. In a way your roles are slowly changing and sometimes you may need to take the lead. My mum had died and my father vehemently resisted the idea of someone delivering a meal to him but in less than a week he was waiting by the door at noon for the delivery and spent the afternoon checking of the selections for the next few days meals. He was always a bit grumpy and got worse as he got ill but a doctor explained that, when he was able to think it through he was probably terrified because he realized he was loosing his Independence and allowing him to live in his comfort zone was a way of keeping sane, even if that meant cutting back on what he used to do.

Christopher Sasso  Ray, I'm okay with our roles changing because my dad raised me to be a responsible. It's just hard. I only want the best for my parents and their future. Personally I've been a mess as of recent. I also fear another diagnosis or problem but I guess this is life. I'm glad my mother is around to help but she's tired also. Tomorrow he sees the doctor so I'll update you guys tomorrow. Thanks again for everything. This is helping me.

Rita Savelis  Christopher, I hope your doctor visit goes well.
Perhaps you can get explanations for the various meds and find out if they are absolutely necessary and why.
I always felt that if I didn't ask, I would stay indefinitely on some meds that I didn't really need and that made me feel dinky dow.

I can understand the "apologising for being sick" - there can be a feeling of failure towards the family if you don't get back to being "normal" .

Enjoy the football watching moments.
Life is made up of lots of difficulties and a few lovely moments, like football.
Take care.

Christopher Sasso  Hello All, The doctors visit went great. My mother has also said that this week has been a very good week. The doctor has emphasized to my dad that this often happens after surgery and is not uncommon. My dad always loves seeing his doctor, he's been a real friend to our family. He reduced one of the water pills that he was on and said over time memory problems will eventually stop or improve. He's been on some of these meds for years so the right balance is necessary. Due to his traumatic year I believe he's been anxious, scared, and very hesitant to do anything as of late. So one day at a time hopefully it will improve. The doctor is very happy with the way he looks and his blood work and his examination today. I trust his doctor, but as a family its hard to believe anything after so many emotions for a year now. I'll continue to update as we go, but once again thanks for the support and advice. One day at a time. It's funny because my dad gets so happy after meeting with his doctor. Its like being reassured of your life.