Welcomed to the Broken heart club - British Heart Fou...

British Heart Foundation

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Welcomed to the Broken heart club

AdamHi profile image
8 Replies

Good evening and please excuse the headline, I am just beginning the journey of life with Atrial Fibrillation. I have now had two bouts of AF and associated extremely high blood pressure, the last being just 24 hours ago. I took myself to the hospital and after some time was advised that I need to commence a drug programme in order to manage the condition. I am 51 years old and very anxious about being advised that I have this problem with my heart, I have also been diagnosed with T2 Diabetes for 4 years.

So, as I am adjusting to the shock of this diagnosis, I thought it would be best to try and learn about the long-term outcomes of this issue. I will be taking Beta Blockers, Anti coagulants and blood thinning drugs. I am nervous about it and with my diagnosis being so new, worried about the effect on my life, my length of life and also how safe these drugs are to us (I fully appreciate that NICE recommend these drugs, but i do like to have all the details~)

I would be very interested in hearing from other people in their 50's in a similar position that maybe able to share their experiences. Thanks in advance.

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AdamHi profile image
AdamHi
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8 Replies
Marfanwarrior profile image
Marfanwarrior

Good evening. I have just joined and read your post. I have been on anti Co ag drug (Warfarin) for 25 years and had no side effects at all. It can be a pain to control but there are now more modern anti Co ags on the market. (I can't take these as just had an aortic mechanical valve fitted). The best advice I can offer is that you ask, ask and ask again, any questions you may have when you see your cardiologist or GP. Write things down before you go to see them. I am 59 by the way. I have also had AF and it was well controlled and monitored with the tablets.

Kaz747 profile image
Kaz747

Hi Adam

Welcome to the club. I suggest you check out the AF Association forum on Health Unlocked which is a great, supportive community of people who know exactly what you are going through and share their (our) experiences about living life to the fullest with AF, as well as how they (we) cope with medication, procedures, work, anxiety and any other hiccups.

I’m 54 and was diagnosed with Atrial Flutter and Atrial Fibrillation this year but first had heart rhythm problems 2 years ago after ankle surgery.

Kaz

Agree with Kaz747. Health Unlocked AFA forum is the one for you. I was diagnosed with AF in July and have had so much support & learned a great deal from all the lovely people on there.

For your peace of mind - most AFers find QOL (quality of life) is affected, but length of life is not, as long as you take anticoagulants and deal with your other issues e.g. T2Diabetes. With AF our hearts tend to be ‘crazy’ rather than broken.

Ab14e profile image
Ab14e

H

Ab14e profile image
Ab14e in reply to Ab14e

Hi Adam I was diagnosed with AF 19 years ago on beta blockers and anti coagagulants I live Avery active life was in my early fifties when diagnosed it is a shock and takes time to come to terms .Now in my seventies people are always surprised when they find out I have AF also pacemaker along with diabetes type 2 and Osteoporosis . Take each day as it comes you can still lead an active life eat healthily and find out as much as you can on healthcare

Aquataine profile image
Aquataine

Hi

My husband has just been diagnosed with AF and has been on beta blockers and anti coagulants for 3 months now. It has taken a while but he does seem to have stabilized now but has never recovered fully to his old self. He has little stamina and has to pace himself. I think he is in permanent AF but we are seeing a cardiologist on Monday for the first time.

I am going to explore the possibility of ablation surgery so that he doesn't have to take these drugs but don't know if it is possible or even if he is a good candidate.

I had some brilliant support from the people on here when I was desperately worried, 2 things stood out from all the replies I got DON'T GOOGLE IT and INSIST ON SEEING A CARDIOLOGIST!

Good luck

not2worry profile image
not2worry

My hubby developed persistent AFib in January 2018. It came out of the blue after having a stent procedure. He is 83. The doc described it to us that his heart was beating like he was running a marathon 24/7. No energy, no motivation, exhausted and depressed.....who wouldn’t be?

They immediately started him on daily dosage of warfarin to thin the blood. AFIb won’t kill you but the condition can cause blood pooling in the right heart atrium which then can lead to a stroke. warfarin won’t stop or control the Afib it acts as a blood thinning agent to prevent strokes.

My husband was not a good candidate for ablation which is a invasive procedure where they enter the heart via a procedure much like an angiogram but the purpose is to destroy electrical nodes that are “misfiring” and creating the erractic heartbeats. We know many folks who have had the procedure (it usually takes 2 abalarions done over time) and their AFib has ceased. It’s a fairly new procedure that’s been in use for some years but has good results. You still have to be aware of the possibility of the Afib returning so self monitoring is necessary. So folks with Afib can’t “feel” their heart racing - my husband is one of those-the only symptom he had was fatigue that completely demobilized him.

The doc the did a Cardioversion once the warfarin got him in the 2-3INR range for 30 days. This is the procedure where they sedated your and use an electric paddles to deliver a shock to your heart to put it back into normal rhythm. It worked for 5 days

My husband was then put on Amiodarone,which can have some horrendous long term side affects, that controlled the AFib. At his age the doc felt it was the best solution. Once the Amiodarone kicked in, which was pretty quick, less than a few days, the doc kept on the drug for 2 months at a rather low dosage and he stayed out of AFib. He regained his energy and strength but not like before the AFib.

Once this occurred the doc did another CardioVersion and this time it worked and amazingly together with a lower dosage of Amiodarone he stayed out of Afib for 4 months.

At this stage the doc said he was a good candidate for a PaceMaker! He had the procedure in September and I know it sounds impossible but the next day he woke up, got out bed and said Wow I feel great!

The CardioVersion procedure takes about 20 minutes total. And is outpatient. My husband didn’t even know he had it other than having a few bruises from the paddles.

The PaceMaker was also an outpatient procedure but is invasive. My husband had 2 leads that synchronized his electrical nodes which eliminated the Afib. He decided against defibrillator lead mainly because of his age. Recovery time is around 8 weeks. 4 weeks you can’t lift your left arm and can’t swim, golf or do anything the next 4 weeks. This time is necessary and the limited activity is to assure that the leads settle in, effectively graft onto your intervals so the become part of your body and stay firmly attached to the actual pacemaker which is a small device (actually a mini computer) installed under your skin near your left clavicle. My husband thought the area where they installed the PM would be painful but Tylenol was all he had to take to relieve the pain. The staples were removed from the PM site 10 days later. The most important aspect of a good recovery for us was to follow the protocol after the procedure. Keeping the left arm down was the biggest challenge so my husband wore a long sleeved shirt and we used safety pins to anchor the sleeve down-if he tried to raise the left arm he got a tug to remind him. Wore all day and night. The hardest thing at first was sleeping. They want you to keep your head elevated. 2 pillows did it for my husband but it is a challenge. We had bed creep-he took over the bed so I moved into the guest bedroom.

The PM my husband has was developed by St. Jude’s Hospital here in the States in partnership with Abbott Labs. It’s pretty amazing! He has a small portable transmitter at his nightstand that connects like a cell phone or landline and plugs into an electrical out let. The transmitter picks up the PaceMaker signals every night when he goes to bed! The signals are sent to St. Jude facilities around the world, deciphered and sent to your doctor every morning. Our doctor has a device monitoring desk that reads the reports every morning and contacts us if there is any problems. They can tell what your heart rate is (in Afib, out of setting range, any fluid accumulating in the lungs and even read precursors that may indicate the onset of a HA). The transmitter at the bedside also has several icons - a green light tells you it’s plugged in and working. A tower icon lets you know if there is a problem making contact with your pacemaker (if you use a landline they have a splitter so someone may be using the phone or if the could not get a signal from a cell tower and then one that is a little stars that light up indicating you need to call your doctor if you haven’t already been called. You can take the transmitter with you as you travel - domestically or worldwide. Our doc said travel less than a week no need to take but long best to have. Science is amazing!

My hubby still has to take warfarin and we monitor once a week with a home device provided by our insurance company. The pacemaker is amazing but not perfect. If my hubby were to go back into Afib we need the blood thinner to prevent a stroke. A small price to pay for all the benefits of gaining back a good quality of life!

We’re going on a Cruise over the Christmas Holidays, traveling to the Caribbean in Feb and have a month long trip planned to Europe.

All of these may sound overwhelming and it was-but having lived it for the last year the light at the end of the tunnel isn’t another train.....it’s the opening of a new life, a second chance to live and cherish each day.

Stay strong, stay positive, stay hopeful and pray-there is a God!

Yours from Across the Pond

S11m profile image
S11m

I am now in my late 60's, but I think I was in my 50's when I first had AF... but I was not diagnosed for years. I had Bradycardia AF, so my problem was low blood pressure

I have had three Cardioversions, two Catheter Ablations and two pacemakers... and I am cured!

It is not ideal, but at least you have been diagnosed, and they are on your case!

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