batteryleads

I'm in a similar situation

by Pacemaker_Sally - 2020-02-23 15:57:20

I am guessing that 1.7 refers to Millivolts. Have they determined whether your pacemaker is undersensing or oversensing? Have they made any adjustments to the sensing threshold to try to compensate for the problem lead? What did they say the next steps are?

batteryleads

by Pop - 2020-02-23 16:59:39

Sally thank you for your reply, implant was done November 2017, after eight weeks check up was told used up 71/2 of battery, device was turned down to preserve the remaining battery life, had problems ever since, admitted into hospital A&E twice once at 3AM, heart kept pausing and chest pains. When I go for check ups one tells me there is a lead displacment then next time there is no lead displacment. One time I ask a question, the reply was cannot comment in fear of legal consiquences, now been going far too long, now getting a letter drafted up to take with me this friday, I am going to make an official complaint.

Get a new EP

by Good Dog - 2020-02-23 17:07:58

You really should get a new doctor if this one doesn't remedy your problem immediately. You should not have to wait around for them to get their act together. It is hard to know exactly what the problem is, but it is clear there is a problem. If I were you I'd grab my records and take them directly to a new EP/cardiologist. If the problem is a lead dislocation, then they should get you in ASAP and get it fixed. Regardless of the problem, it can and must be fixed. Additionally, you need to know what it is. If they don't know, then that is all the more reason to find another doctor. Demand answers!

I wish you the best,

David

batteryleads

by Pop - 2020-02-23 17:29:43

Thankyou for your support David, My sister is drafting me a letter for me to take with me on Friday, requesting a written record of my file, also requesting my file is sent to my GP, I feel I am being passed around, December 2019 had bad chest pain, as a result I fell down in the garden, went to hospital following day for a check upn the device was set to original settings, also told that the battery would not last much longer, the doctor told me that she would reccomend that the battery and displaced would be changed in very near future, she rang me a fiew days later and told me that she had been overruled, felt some improvment, ,still getting heart pauses, dizzy spells and out of breath. I dread going for check ups.

Your treatment

by Good Dog - 2020-02-23 19:46:05

I understand your dread of check-ups. I am glad to hear you have an advocate. You should know that pacemaker implantation and lead insertion/repositioning is a very safe procedure. As with any procedure, there are risks, but they are very minimal. As I am sure you know, anyone can end-up with problems and doctors are far from perfect. However, there is no excuse for what you have been put through. Your doc should have given you a clear explanation for the problem and the plan to remedy it. There would be nothing wrong with waiting for the battery to be depleted before repositioning the lead if you had no significant negative impact from the issue. However, clearly it has negatively impacted your quality of life significantly. So there is no reason and no justification for the doctor to do nothing. The very near future is not soon enough. You really do deserve to have this fixed immediately. Remember that the doctor is working for you.   

Again,

Best Wishes,

David

After two years...

by AgentX86 - 2020-02-23 20:21:23

After two years, if they can't get you straightened out you are nuts to keep going back to the same doctors.  I know next to nothing about the UK's medical system (and from what I see in this group, it's a real horror show) but you have to find someone competent to take care of this, once and for all.  Yes, after two years lead extraction isn't a walk in the park, even in ideal circumstances but this is getting ridiculous.  I understand why the "lead cardiologist" won't do the removal/repositioning. It's not his specialty.  You need a very skilled EP (as we call them in the US), who specialies in lead extraction and has done many hundreds of them.  This isn't a trivial procedure.

Agent X86

by Good Dog - 2020-02-23 21:29:24

Just a note: I don't think we are talking lead extraction here. It should just be a new lead and generator. He has only 2 leads. So he will then have 3 leads. Pretty simple, cut and dry. 

Lead extraction or third lead

by AgentX86 - 2020-02-23 22:03:55

It certainly could be as simple as another lead but there often isn't enough room in the vein.  I don't know another reason to put this off for two years!  Maybe they're just waiting another year for the battery to be completely drained?  Say so! ...or why the lead cardiologist won't touch it.  Legal reasons?  You have got to be kidding me. What a nightmare.

Lead displacement

by Selwyn - 2020-02-24 07:50:06

Hi Pop,

Thanks for posting. It is not an uncommon problem. I have a bit of a 'duff' lead myself. 

With a lead not providing the conduction or contact to your heart muscle there is a need for the pacemaker to issue a larger amount of electricity to get your heart to contract - hence the drain on the battery and the voltage difference in the leads ( if your remember, Ohm's Law: V= I .R  where V is voltage, I is current, and R is resistance) .

Your problem sounds severe, so much that your heart is not functioning in the way it should with a pacemaker. Either you or your GP should be in direct contact with your cardiologist as a matter of some urgency. You are going to need a proper lead.

In my case ( I am due to see the pacemaker clinic folk in 48 hours) I attend every 4 months as my duff lead is using a lot of electricity and could drain my battery in a few months. Luckily for me, I don't use the damaged ventricular lead that often. My cardiologist thinks that when I need a new unit they will keep the duff lead and accept the enhanced drain on the battery- though a lot depends on my monitioring of battery drain and use of the lead- hence the 4 monthly checks.

As for the comments about our NHS (" I know next to nothing about the UK's medical system and from what I see in this group, it's a real horror show"). I think the "I know next to nothing" disqualifies anything else that follows! The UK system is as good, if not better, than the USA system, namely, I do understand that our health care is without cost.   You have only to search this site with the word "COST" and see the problems some less well off folk in the USA have. What difficult decisions you have to make about the cost of your pacemakers and medication, and surgery.  In the UK I have been an inpatient many times, without cost. My pacemaker did not cost me any money ( I saw the cardiologist on the Tuesday and had my PM on the Thursday). My medications do not cost me anything. My outpatient appointments cost me nothing. My pacemaker check ups cost nothing. My inpatient stays have all been excellent  accommodation with food, drink, medications, without cost,  and with kindness.  I have had fantastic treatment from the NHS.

 The NHS does not discriminate against people  on the grounds of their economic status.  I well remember one  cash  poor family letting their baby have a liver transplant and for the next 25 years that I knew him, he was taken by ambulance ( well  over 200 miles return ) , at the NHS expense, to Addenbrooks Hospital for excellent health care on a regular basis. 

No health care system in the world is perfect.  We all would like unlimited resources for health care. The baseline for our NHS is the benchmark  other countries could do well to aspire to. 

Selwyn

by Good Dog - 2020-02-24 08:34:40

Selwyn,

You said a lot of things in your post about the health care system in the UK. I am on Medicare (over age 65) here in the U.S. and so my costs are minimal and my care is excellent (in my opinion). However, I still have to pay about $3,000+/Yr (usd). Very little costs out-of-pocket throughout the year. However, before I was on Medicare the costs were absolutely through the roof. Before retiring, I worked for a city that struggled with being able to afford adequate coverage for its workers. They were paying $15K-$20K per year per employee for a big group plan) with employee deductables (before any coverage) of $3,000/yr. The city decreased coverage and increased employee costs continuously to keep-up. There are a lot of workers here in the U.S. that are granted great health care plans at very low cost through their employers. Many of those employees have no idea what their employer is paying and simply assume it is great health care at a minimal cost to them. They just don't realize how outrageous the actual costs are. Those folks, as do all of us, receive great care and we are bombarded by a lot of propaganda about how bad our system woud be if we changed to a system like the rest of the world. So yes, we do have what might be considered the best care money can buy, but it is getting to the point that we are running out of money to buy it. People that cannot afford health insurannce are either the poorest of the poor that get care at the cost of everyone else or if you have some assets, they get taken away if you get sick. I am  (even though it would not benefit me) an advocate of health care for all.

Another curious thing we are beginning to see, and I don't know if it is just in the U.S.. It is when someone that contracts a deadly form of cancer surprisingly survives (usually a rich and/or famous person). They survive while all others that have less money die from the same form of cancer. They survive, because they are getting a new miraculous treatment (drug) that brand new technology has developed. When I inquire why others are still dying from the same affliction, I find-out that it is, because the average person cannot afford it. Things like drugs at a cost of $50,000/month that must be taken for six months or longer. Insurance refuses to cover those costs. So we are at a place where the rich can buy longer lives while the less fortunate must die, because they cannot afford the treatment. It is happening now. I don't know if this is a problem that exists in the UK, but it certainly does here. I also doubt that it can be fixed by a health care for all system. I don't know. However, it is time in the U.S. for health care for all, much like you have in the UK. It is a controversial issue here, because those fortunate to have a great plan they can afford don't want any changes. It is a selfish attitude, but hey, that is the way it is in America.

Pop

by Gemita - 2020-02-25 14:35:59

I have to say reading your posts has been very depressing and worrying and represents the very worst in care.  It feels as though there has been a complete break down of trust between you and your doctors and when this happens, I do not feel there is really any way back.  

Could you ask for a referral to another hospital and doctor of your choosing for a second opinion?  If you suggest quite honestly and frankly that confidence has been shattered and you believe it would be in your and their best interest to help you find another team to care for you, surely between your GP and present hospital consultant, this should be possible ?  Failing that, you could perhaps ask for a one off private consultation with a doctor of your choosing and then switch back to the NHS for continuity of care under the new private doctor (most of them run NHS clinics too).

I see you are in UK.  Have you spoken directly with PALS (patient advisory liaison service). Get as much information and help as you can and get them on your side.  Then yes write to the Chief Cardiac Physiologist or whoever leads your team, with a copy of the letter to perhaps the Chief Executive of the hospital explaining fully what it has been like living with this problem for some two years.  Explain that you considered your current team to be professionals, you trusted them with your life and you now feel let down and concerned for the future under their care.  I see you have an appointment on Friday with your doctors.  I do hope you can move forward.

I have mainly received good treatment under the NHS service, although I did change my cardiologist at the start of my pacemaker journey because of a breakdown in confidence/trust and it was the best thing I could have done - cardiologist referred me to another member of the Cardiac team in the same hospital and I now have a lovely EP who is willing to listen to me and we have worked well together to find a solution for my problems.  

Good Dog, there will be good and bad doctors in all health systems.  The NHS in the UK has served my hubby and I well especially when we were both facing life threatening illness.  My experience when I faced metastatic cancer was that the NHS offered me the very best treatment to stop the spread and to save my life and this was all completely free.  Indeed when I suggested that I could go private to perhaps receive better treatment, my consultant raised his hand and said no, you will receive the very same treatment under the NHS, if not better.  I was treated in a renowned cancer hospital at my request.  Whatever I requested in treatment and investigations I was given.  Truly amazing.  Couldn’t have been better.

complications

by Pop - 2020-02-25 15:37:48

Thank you all for your reassuring comments. The NHS here in the UK is in a mess,  I have no bad feelings towards all the staff at the new Papworth Hospital, when I go for follow ups or iwhen I have problems it takes just one telephome call and usually I am seen the next Day, The hospital staff I see are, polite, thorough in examinations, caring, and very knowlagable in their field, but I do feel that they are answerable to Cardiologist above them or hospital managment who look at finances first. I have written to the cardiologist who I think performed the implant and posted it today. on friday I naad an HONEST answere. This will be the last oppertunity to give me one. Yes visit PALS on way out,Ialso have legal protection insurance,