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JohnM

Health update.

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On 07/12/2019 at 08:11, Dave T said:

In the 40s. Before the procedure it was around 80 and that was on beta blockers. They have halved my dose so hopefully it'll settle, or maybe the beta blockers aren't needed any more. 

They seemed OK with it once the doc had been, but I'm gonna monitor it now on this lower dosage. Still on blood thinners too. 

Thanks mate. 

Mine dropped to around 42 following the cardioversion, the cardiac team had kept me on beta blockers at half the dose I’d been on before. After a week or so this got halved again and then dropped completely. Now sitting at low 50s as a Resting heart rate

 

 

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47 minutes ago, Shadow said:

Mine dropped to around 42 following the cardioversion, the cardiac team had kept me on beta blockers at half the dose I’d been on before. After a week or so this got halved again and then dropped completely. Now sitting at low 50s as a Resting heart rate

 

 

Mine seems to have settled at 52 and on half the dose too. I haven't got an appointment with the cardiologist for a few weeks, do you think I should be pushing for a GP appointment to review in the meantime, they didn't seem too concerned when they were letting me leave the hospital? 

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Learning to live with permanent AF is one hell of a problem. It seems that of your heart rate is too low, you are in danger of fluid build up in lungs and feet as your circulation is not enough to keep everything on track. I've not been offered cadioversion, etc as at my age, it's likely to be less than 50% effective. During my mitral valve replacement op, they tram was due to burn out certain nerves in my heart to try to correct the AF but they ran out of time after almost 9 hours in theatre. The AF is currently within the range that can be treated with drugs. All BP measurements have to be taken manually as auto machines can't cope with A'F pulse irregularity. 


Four legs good - two legs bad

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I've been waiting for good news before posting this publicly.

My wife had surgery to remove a cancerous lump from her breast on Tuesday. The surgery went well and she was released from Heraklion hospital yesterday evening. She is sitting opposite me in our local taverna, drinking wine and waiting for our meal.

First signs are very positive, surgeon is very happy with the procedure and the first post-op meeting with said surgeon is on Sunday. I am happy.☺

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Excellent news. 

(For some reason, though, I don't seem to have the facility to react to posts any more. That seems to have disappeared.)

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Four legs good - two legs bad

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1 hour ago, JohnM said:

Excellent news. 

(For some reason, though, I don't seem to have the facility to react to posts any more. That seems to have disappeared.)

Fixed that for you...

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“Travel is fatal to prejudice, bigotry, and narrow-mindedness, and many of our people need it sorely on these accounts. Broad, wholesome, charitable views of men and things cannot be acquired by vegetating in one little corner of the earth all one's lifetime" - Mark Twain

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4 hours ago, tonyXIII said:

I've been waiting for good news before posting this publicly.

My wife had surgery to remove a cancerous lump from her breast on Tuesday. The surgery went well and she was released from Heraklion hospital yesterday evening. She is sitting opposite me in our local taverna, drinking wine and waiting for our meal.

First signs are very positive, surgeon is very happy with the procedure and the first post-op meeting with said surgeon is on Sunday. I am happy.☺

Well, hooray!

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"You clearly have never met Bob8 then, he's like a veritable Bryan Ferry of RL." - Johnoco 19 Jul 2014

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17 hours ago, tonyXIII said:

I've been waiting for good news before posting this publicly.

My wife had surgery to remove a cancerous lump from her breast on Tuesday. The surgery went well and she was released from Heraklion hospital yesterday evening. She is sitting opposite me in our local taverna, drinking wine and waiting for our meal.

First signs are very positive, surgeon is very happy with the procedure and the first post-op meeting with said surgeon is on Sunday. I am happy.☺

Very pleased for you, great news.

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Glad to see the back of 2019. I spent around 37 weeks in Hospital for one reason or another (Stem cell treatment, Chemo, roblem with the lungs, low blood results (Thrombozyten, Leukozyten and HB) etc). Still am here and feel OK considering.

I had Stem Cell treatment to try and repair some damage to my Bone Marrow in November. This looks to have worked to some degree but my Thrombozyten after rising to 94K are dropping again and at mo around 50K. My HB is around 11-which is the highest its been in 18 months!

I hope to take a new anti-body this week and then every 3 weeks in future. Hopes are high this new medication gives many patients a good remission time. So I am feeling good and positive , as well as a bit frightened, as my blood levels are not the best and why I cant often get on a "Study" with new meds.

I feel so useless and angry at myself at times for ruining or making life so hard for my wife and daughter as well as other family members. They just drop everything so often for me when I end up in Hospital etc. I feel so guilty that sometimes I physically cant do much as am so tired or my back with 5 ermanent fractures, means I cant use a vac, cut the grass etc due to putting pressure on back and possibly risk more damage. I just feel like a burden. I think mentally having an incurable disease like Myeloma is tougher than the physical battle. Least I can still walk the dog and fill/empty dishwasher etc. And I have a much better life than many others. Life is tough, but there are others like Rob Burrow, who have it harder and whi I get much inspiration from. I feel 2020 will be a better year for me . Very lucky to have great family and friends around the world for support. Many dont have that.

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Cant press the like button as clearly you are in a battle for your health . Great you have support from family and friends . 

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I have been told am on the Last line of therapy and on 28th February have Meeting in Hamburg on where we go. The reality is that I have maybe around a year to live. But there are cases of people living years with no therapy. Maybe I have some luck. I will keep on fighting as best I can.I am so angry and hurt and the hardest thing is how to tell our 4 year old daughter. Its so cruel on her. I have built up a gallery on my E Book of Photos and videos so she can have atleast some memories of me. I dont leieve in Heaven and Hell and certainly not in any god.

Naturally in shock and cried. Very hard,to understand or get my head around. I dont expect anything from people and there is nothing to say really. Thanks for your support over the past and also in future times.

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"support... in future times." 

You are sure to have the moral support of the forum.  Maybe overused cliches but "we're here for you" and "it's good to talk". 

 

 

 

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Four legs good - two legs bad

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5 hours ago, Lounge Room Lizard said:

I have been told am on the Last line of therapy and on 28th February have Meeting in Hamburg on where we go. The reality is that I have maybe around a year to live. But there are cases of people living years with no therapy. Maybe I have some luck. I will keep on fighting as best I can.I am so angry and hurt and the hardest thing is how to tell our 4 year old daughter. Its so cruel on her. I have built up a gallery on my E Book of Photos and videos so she can have atleast some memories of me. I dont leieve in Heaven and Hell and certainly not in any god.

Naturally in shock and cried. Very hard,to understand or get my head around. I dont expect anything from people and there is nothing to say really. Thanks for your support over the past and also in future times.

Mate, whatever any of us can realistically do, I'm sure we're all on hand to do it. Let us know what is said and decided at your meeting on the 28th.

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Build a man a fire, and he'll be warm for a day. Set a man on fire, and he'll be warm for the rest of his life. (Terry Pratchett)

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8 hours ago, Lounge Room Lizard said:

I have been told am on the Last line of therapy and on 28th February have Meeting in Hamburg on where we go. The reality is that I have maybe around a year to live. But there are cases of people living years with no therapy. Maybe I have some luck. I will keep on fighting as best I can.I am so angry and hurt and the hardest thing is how to tell our 4 year old daughter. Its so cruel on her. I have built up a gallery on my E Book of Photos and videos so she can have atleast some memories of me. I dont leieve in Heaven and Hell and certainly not in any god.

Naturally in shock and cried. Very hard,to understand or get my head around. I dont expect anything from people and there is nothing to say really. Thanks for your support over the past and also in future times.

So sorry to hear that. Life can kick us in the guts and kick us again and again...........

Let us know how you are getting on.

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On 12/01/2020 at 22:43, Lounge Room Lizard said:

Glad to see the back of 2019. I spent around 37 weeks in Hospital for one reason or another (Stem cell treatment, Chemo, roblem with the lungs, low blood results (Thrombozyten, Leukozyten and HB) etc). Still am here and feel OK considering.

I had Stem Cell treatment to try and repair some damage to my Bone Marrow in November. This looks to have worked to some degree but my Thrombozyten after rising to 94K are dropping again and at mo around 50K. My HB is around 11-which is the highest its been in 18 months!

I hope to take a new anti-body this week and then every 3 weeks in future. Hopes are high this new medication gives many patients a good remission time. So I am feeling good and positive , as well as a bit frightened, as my blood levels are not the best and why I cant often get on a "Study" with new meds.

I feel so useless and angry at myself at times for ruining or making life so hard for my wife and daughter as well as other family members. They just drop everything so often for me when I end up in Hospital etc. I feel so guilty that sometimes I physically cant do much as am so tired or my back with 5 ermanent fractures, means I cant use a vac, cut the grass etc due to putting pressure on back and possibly risk more damage. I just feel like a burden. I think mentally having an incurable disease like Myeloma is tougher than the physical battle. Least I can still walk the dog and fill/empty dishwasher etc. And I have a much better life than many others. Life is tough, but there are others like Rob Burrow, who have it harder and whi I get much inspiration from. I feel 2020 will be a better year for me . Very lucky to have great family and friends around the world for support. Many dont have that.

Angry at yourself? Why? You didn't get this ###### deliberately. You are not at fault. Don't blame yourself. In some ways, you are blessed - you have a loving family who are happy to do the heavy lifting for you while you are unable.

I know it's trite, but "Count your blessings." You have a loving wife and a daughter. Keep fighting and if you need to vent, we are here, so scream and shout all you like. Good luck!

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Rethymno Rugby League Appreciation Society

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On 12/01/2020 at 21:43, Lounge Room Lizard said:

Glad to see the back of 2019. I spent around 37 weeks in Hospital for one reason or another (Stem cell treatment, Chemo, roblem with the lungs, low blood results (Thrombozyten, Leukozyten and HB) etc). Still am here and feel OK considering.

I had Stem Cell treatment to try and repair some damage to my Bone Marrow in November. This looks to have worked to some degree but my Thrombozyten after rising to 94K are dropping again and at mo around 50K. My HB is around 11-which is the highest its been in 18 months!

I hope to take a new anti-body this week and then every 3 weeks in future. Hopes are high this new medication gives many patients a good remission time. So I am feeling good and positive , as well as a bit frightened, as my blood levels are not the best and why I cant often get on a "Study" with new meds.

I feel so useless and angry at myself at times for ruining or making life so hard for my wife and daughter as well as other family members. They just drop everything so often for me when I end up in Hospital etc. I feel so guilty that sometimes I physically cant do much as am so tired or my back with 5 ermanent fractures, means I cant use a vac, cut the grass etc due to putting pressure on back and possibly risk more damage. I just feel like a burden. I think mentally having an incurable disease like Myeloma is tougher than the physical battle. Least I can still walk the dog and fill/empty dishwasher etc. And I have a much better life than many others. Life is tough, but there are others like Rob Burrow, who have it harder and whi I get much inspiration from. I feel 2020 will be a better year for me . Very lucky to have great family and friends around the world for support. Many dont have that.

Mate, I could be completely wrong, but my impression is that much of your life has been tough with many people who did not have your best interests at heart. You are very welcome to tell me to F off, but the last few years, you have been lucky enough to have a family who truely, love you and value your happiness. I think they want you to be happy and if you learn to forgive yourself (as in accept rather than ignore), you will help them in that. Because there is nothing to forgive. You are a great Dad, a great husband and a great man. I am lucky to have met you. I hope I get to do so again before too long.

And if we do catch up soon, let's ignore this emotional post and it would be socially awkward 😄

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"You clearly have never met Bob8 then, he's like a veritable Bryan Ferry of RL." - Johnoco 19 Jul 2014

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