diagnosed in Feb. with atrial flutter at ED

[PRM54]

good morning,

My name is Patrick McConnell and I live in Burlington Ontario Canada. I am 79 years old and a very athletic person most of my life.

But my main issue is no stamina and always short of breath. I have been on a BTK blocker for 7 years to control my CLL. Chronic lymphocytic leukemia and doing well.

I have had a Holter, stress test, and echocardiogram. The results over a 48 hour period were many PCV’s, atrial flutters and some afib, To shorten my story I am on 5 mg apixabam, split in two, and came off metoprolol because of heart rate going too low.

My cardiologist thinks it’s a symptom of my cancer drug called Ibrutinib which has been a control saviour….. that’s my long story and will be following up with my Oncologist. in 3 weeks …… just scared of how I am limited in my exercise and thanks for listening.

Patrick

[mav7]

Morning Patrick

Sounds like you are receiving good medical advice and care.

I can offer no medical advice but as a former person who loved to exercise it is an adjustment. Exercise is a gift both physically and mentally.

I would encourage you to consult with your doctors on a proper exercise regiment. Though it may be greatly reduced from the former, it will be beneficial. Personally, I have gone from running 3 miles a day to short walks and light strength and flexibilty training.

Best to you in managing your health.

[PRM54 in reply to mav7]

Thank you for taking the time to make your constructive advice. Much

Patrickappreciated.

[Ppiman]

Hello Patrick

I can't offer much at all in the way of advice, but I thought I would reply as your post had such a positive ring to it and that's the kind of outlook that we all need. You sound a fine Canadian! I know that when multiple conditions strike, it is extra hard going as well as being a tough call for doctors to treat. Some people seem to sail through life in calm seas and with the sun shining daily! You have been through some storms and more than one tempest, I can see; in fact, to quote from another "Tempest", the one by Shakespeare, it must have sometimes felt like “Hell is empty and all the devils are here"!

I send you my best wishes and do hope that things settle down soon. They usually do! Canada is one of two countries that, as a child, I dreamed of visiting (the other being New Zealand). Images on TV and postage stamps of Canadian Mounties was always inspiring! I still hold the country in the highest regard.

Kindest regards

Steve

[PRM54 in reply to Ppiman]

Thank you Steve for taking the time and commenting on what I had described about my situation. Especially your nice descriptions of Canada.

How are you as I’ve only been talking about myself. I trust all is well with you and you are doing well.

Take care. Patrick

[Ppiman in reply to PRM54]

Thanks you, Patrick! I’m fine really. I seem to always have issues with palpitations, ectopic beats and chest / lower rib discomfort - AF is much less common with me with only two known attacks in the past couple of months. Is it my stomach setting off my heart out of it my heart setting off my stomach? I doubt I’ll ever know!

Steve

[PRM54 in reply to Ppiman]

good to hear Steve.

Patrick

[marcyh]

Hi Patrick,

Welcome here from a long-time CLL friend and now a partner with AF. Not the way you and I planned it but we can journey together. Unfortunately, AFib is a well-known adverse effect of ibrutinib and many patients have had move to another therapy for their CLL. This is something I would press the oncologist on.

I'm curious about your echo result. Was it normal?

You have come to a good place for information and support.

Sincere best wishes,

marcyh

[PRM54 in reply to marcyh]

Hi Marcy,

So good to hear from you and providing me with this particular group of knowledgeable people.

Since Feb.20 when I was diagnosed with atrial flutter, I was put in small dose eliquis and low dose metoprolol in ED.

Stopped taking metoprolol because of low heart rate. Only on elliquis low dose.

I have to admit I’m scared and my resting heart rate in morning is 90ish but my cardiologist said to live with it….. the echocardiogram was ok but my stamina

and shortness of breath is traumatizing.

Have applied for ablation and my cardiologist also relates it to Ibrutinib .

Im still on a trial after 7 years and will see my oncologist early May. I don’t know what will happen and guess I may have to live wit it or? Sorry for long text Marcy but thanks for your comments.

Patrick

[marcyh]

I would think your oncologist will have other ideas. Since you are already on a trial he is obviously monitoring options for you.

I know I wouldn't be a candidate for ibru, probably venetoclax if the time came. So there should be options for you. Have your questions ready. Hopefully this will not be something you have to live with but rather something that can be resolved. Keep us posted.

[PRM54 in reply to marcyh]

will do and thanks again

[DawnTX]

Patrick unfortunately with a fib etc. I think we all have a problem with stamina and energy for various reasons. I got a pacemaker in February and overall I’m starting to do great but I have no stamina. For the last year and a half I was in tachycardia being unable to do anything in fact, I could barely walk across the floor. Just like when you go to the gym all the time and then for whatever reason you must stop. Think about when you go back, it is like starting all over again, even if you had worked out daily for years . Right now I find that when I have a wonderful day that also is slightly busy for me compared to how I have had to live until the pacemaker, the next day I am exhausted. When I get home from whatever I’ve been doing, and I assure you, I am not running a marathon, just errands . I cannot wait to lay down. I had this happen the other day and my nap turned into all day and all night after I got home. Even the next day I was still tired. I have heart failure next month they will do an echo to see if it has gotten worse or maybe even improved a little bit with the pacemaker. My EP told me I need more rest. He said just looking at me. He could see that I was tired and I need to listen to my body not try to expect anything except what my body tells me right now while it heals and adapts.

Hon you have your battle with leukemia and meds. I thank you are doing incredible. Please don’t be scared. I am not dealing with anything like you and I have no stamina. Good things come to those who wait. If it’s a side effect of your meds it is what it is, unfortunately the joys of a fib and other things. Big hugs.

[PRM54 in reply to DawnTX]

What a nice letter and taking the time you did to explain your challenges Dawn.

I really appreciate your giving me the details of your situation…… and you’re right in that you only do what you’re able to and listen to your body.

I will be seeing my oncologist in a few weeks and he may have a different drug prescribed. We’ll see and you be well Dawn and will keep in touch.

Patrick

Burlington Ontario Canada

[DawnTX in reply to PRM54]

Patrick yes please keep in touch. I meant to tell you my dad was Canadian from Newfoundland. Yes, I know there are a lot of jokes about newfie lol a finer man you had never met if you knew him. Even now I am choking up. I miss him so much. It’s been 20 years and I’m an old lady now I am 70 but I’m still Daddys little girl in my head and heart.

I am a Bostonian by birth FYI. You have to be good to yourself and do what you must. If you find your doctor is not treating you right you need to find another but it sounds like you are in good hands so far. Every medication has side effects and reacts differently to different people. I have heart failure Which my doctor is hoping the pacemaker helps. I will know more next month when they do another echo. I don’t know if you have much information in Canada about a fib, but I never paid attention to it until I woke up on the floor one night. Even then, when I was feeling good I forgot I had it. Some people are very lucky , they have a treatment and it works for a very long time. None of my treatments after the first to ablations worked for me, and I had a horrible doctor that abandoned me at one point. That’s why I say if you need to find another and do it quick. I was so exhausted I could not fight for myself at the time, and the length of time with tachycardia is what caused my heart failure. I just exhausted it. If I had gone to the doctor, I finally went to things might be different. do you know what they say though would’ve should’ve could’ve it doesn’t matter we have to push forward. You are far from the loan, so hold my hand. We have plenty of other hands to hold as well on here. I can’t believe what wonderful people I have met here. If not for them, I might not have gotten my pacemaker. I was very against it and now it is the best thing I could’ve done for myself. Giant hugs. I feel like I found a little brother.❤️

[PRM54 in reply to DawnTX]

Hi Dawn,

Your letter was so empathetic and your comments about you and your family.

Newfoundlanders are super friendly and a credit to Canada. I, too, miss my parents and father in law. We had a close relationship and he gave me wonderful wife…. But that’s another story.

I hope your pacemaker works out and I bet you will have a better quality life…..you certainly deserve it.

I’m a terrible texter and my typing is horrible but I search for each key like searching and pecking. Lol.

Will keep in touch Dawn and take care.

Patrick

[DawnTX in reply to PRM54]

Have you tried talk to text? You just have to watch it sometimes it writes things nothing like you have said lol

[PRM54 in reply to DawnTX]

Good point…

[DawnTX in reply to PRM54]

lol some people thought I was a genius and a crazy good typist lol it is hilarious at times whether it is my accent or whatever that it types crazy stories sometimes quite naughty so you have to check before you hit send lol good night it’s 10:35 PM here. Past this old lady.’s bedtime lol

[PRM54 in reply to DawnTX]

love to hear some naughty jokes

[DawnTX in reply to PRM54]

lol

[DawnTX in reply to DawnTX]

thank you for your kind words about newfie’s. I worked with an agency that worked with the military in Boston. It is called the USO. We had a lot of Canadian ships come to Boston, who became like family to us. I learned a lot of newfie jokes because they would tease each other. I brought one home that I thought was funny one day dad did not laugh. Lol darn those Canadian sailors lol. Oh, the good old days. My dad was from Stevensville. His uncle was mayor. Dad went on to be a firefighter in Boston along with his brothers. His sisters were not very nice. I wish they had stayed in Canada. Lol. You are a sweetheart I can tell you would’ve liked my dad and he would’ve liked you.

[PRM54]

one important question

I forgot to ask and has anyone been on Ibrutinib with your atrial fib?

Patrick