ICD/Pacemaker Combo?

[kathyn2]

Hi, I am an old member of this group that hasn't posted in a long time. I have had hocm for years with symptoms of shortness of breath, palpitations etc but no history of any other family members with this disease nor any sudden death in the family.

Recently I have had more heart palpitations and had fleeting blackouts twice and I saw an electrophysiologist today because of the blackouts (2 in 2 weeks). He wants to implant an icd/pacemaker combo wed so I don't have much time. He thinks the blackouts are dangerous. They only last a second and I have never gone all the way out. But I have been wearing a monitor for a few weeks where you hit a button if you feel something funny and call them in over a phoneline. So far nothing I have sent in has been a big problem but today at the doctor office he had a machine that read my monitor and he said there was a long run of dangerous tach on it and I should get the icd asap.

He also wants to try that thing where they pace your heart a certain way to try to alleviate the obstruction. He claims this is 'new'. As far as I remember from this group, that is really something from a few years ago and they decided it wasn't all that beneficial. Can anyone tell me more bout this or if I should get the pacemaker also? I have so many questions and little time. I saw Dr. Pravin Shah at one time but I don't know if I can get ahold of him before wed to get his opinion. And I haven't seend him for close to 2 years.

Whats anyone's opinion about this pacing and is there something 'new' in this realm? Also, can someone tell me how painful this surgery is and how long you are out of commission? And does anyone have a pacemaker and if so, did it make your heart feel better or worse? It all scares me and I don't have much time. He wanted to do the procedure today but I had to take care of family matters first so it is put off til wed. Any and all info is appreciated. I am not sure I want the pacemaker part and am even wondering if the icd is necessary. I do not take any meds because of bad side effects. sorry for the long post. Kathy

[Reenie]

I'd say the ICD is probably necessary and many models have a pacer included. I'm not sure about the pacing feature in that context though. Hopefully someone else will answer you soon.

Reenie

[Laoshur]

Hi, Kathy,

I got an ICD with pacing to reduce gradient in July. My doctor said something similar. He said (after the fact) that he knew that there were some people who were opposed to this, but that he felt that there was data to indicate that it helped. I have not been rechecked because I live in China most of the year, but will return to the US in mid-January to see if it has helped. My take on it is that it seems to have helped a little, if I can guess. I have less squeezing back pain than I did, but most other areas seem to be the same. If anything, CHF is more constant than ever.

I really felt pretty frustrated with the decision to do this because I was just told that I "needed" a pacemaker for monitoring and to prevent potentially lethal arrhythmias. Only after it was done was I told that I was being paced 100%. That really perplexed me. Even then, it was only after I went back for a checkup that the doctor told me that I was being paced to reduce obstruction. At that point there was little to discuss, so I am waiting to see what happens.

I recall reading a post on the "old" part of this board in which someone expressed real frustration with this type of pacing because she said that, if I recall correctly, the pacing had reduced the obstruction enough to make her ineligible for a myectomy, but she still felt as bad as ever. I have looked for this post since I got paced, but cannot find it. Frankly, I am somewhat afraid of the same outcome. I do think that the obstruction may have been lessened, but I still have most of the same limitations as before.

I think maybe the modern ICD's all have the pacing function, so I don't think you can opt out of that, and I don't think there is any reason to do so. But, that does not mean that the "pacing to reduce gradient" has to be turned on.

I cannot tell you whether you should try this or not. But, I think maybe you can go ahead and get the ICD but ask them not to turn on the 100% pacing function until you have had time to research it. Then ask the doctor to give you the reference to the data that indicates that it helps. That way you can make an informed decision.

As far as getting the ICD is concerned, I fainted several times and had brownouts (presyncope) often before I got mine. I definitely have been able to relax and not worry about things like crossing the street in Beijing since I got mine. I was very concerned about the ethical issues of a device such as this, but have not had any concern since I got it.

Hope this helps!
Rhoda

[sueb]

Kathy--I agree with Rhoda that the ICD really helps with the fainting and near fainting and makes one feel much more confident "crossing the street." Mine has two leads which means it can be used as a pacer and sometimes has paced me out of VT, which is far preferable to being shocked; being shocked is far preferable to being dead.

Having an ICD is great. It takes a few days to get over the implantation operation and a few weeks before you are comfortable using your left arm fully. Eventually it becomes a part of you so you aren't aware of it. As far as operations go, it's a simple one! And then the silent little worry (or maybe a bigger one) about sudden death is gone.

I agree also that you should probably ask to not have the pacing for HOCM turned on until you can research this aspect further.

I go every 3 months to have a checkup where they print off what the little machine has done for me. In my case, the settings were adjusted during my first few visits to the EP (although I had no complaints) and have served me well in the two years since, saving my life at least once with a shock and pacing me out of VT (I didn't feel the pacing) three or more times. I do not have pacing to try to help with my HOCM.

I hope you will be as pleased with your little miracle box as I am.

Sue

[kathyn2]

Thank you everyone for your replies. I talked to Dr. Pravin Shah today, the hocm expert I have seen in the past and he doesn't agree with what this doctor wants to do. I found out today they want to put me under and do the electrophysiology tests to see if they can get a bad arrythmia and if they can, then they will implant and icd...if they can't they will only implant a pacemaker.

I think I am going to bow out of this whole thing they want to do on thursday because Dr. Shah does not agree with that test and says he does not find it useful and here I have people down here trying to do a very uncomfortable, dangerous test that isn't of much value. I was under the impression I was just going to get the icd/pacemaker combo until talking with the nurse today. I am hoping to hear from Lisa tomorrow to see what her advice is. Pray please! I am still somewhat scared over the presyncope I seem to suffer from a bit lately from just sedentary activity. Anyway, thank you all. Kathy

[Cynaburst]

Hi Kathy,

We corresponded a few years ago. I had wondered what happened to you. I think you should go see Dr. Shah again and have him do a full evaluation. I had an EP that wanted to do the same thing on me...an EP study and then if I was inducible to VT, and ICD. Instead, I got a 2nd opinion from Dr. Shah, who did other non-invasive tests, and got 2 other opinions from some other HCM knowledgeble Drs. here in L.A.

As a result, I did get an ICD, but after getting alot of other data. I think you should see what your event monitor says over time, and see Dr. Shah, and evaluate your options that way. EP studies are not of much value in HCM.

Good luck.

Cynthia

P.S. If you get an ICD, its no big deal at all. Are you still considering an ablation?

[kathyn2]

Hi Cynaburst. I remember you well and you got your icd about the time I met you here online. I am going to schedule an appt with Dr. Shah in the next couple of months and I am going to ask my reg cardiologist tomorrow if he will renew my prescription for the monitor another month. I am hoping he will do that.

When you got your icd, did they end up doing the electro. tests on you too? Is that something you have to do to get an icd? I got the impression from Dr. Shah that you didn't need to get the tests if you had hocm. That having the disease should make you eligible for getting the device thru medicare (which I am on).

BTW, the reason I haven't been here lately is that last year about this time I suffered from acute renal failure on top of this darned disease and I have been busy with lots of doctors, tests, hospital stays etc and trying to save my kidneys. My worries about hocm sort of went to the back burner. I still have severe renal failure but am not on dialysis so that is one good thing. I have gotten some function back. thanks for responding and I hope to hear from you again soon!

Oh, btw, I was considering the ablation until my kidneys failed. Since I am trying to preserve what little function is left, I do not want the procedure at this time because of the dye they use. It is nephrotoxic. In fact, I hate the idea of any surgery or anesthesia because of the chemicals etc they use. I don't imagine they are very good for your kidneys! Kathy

[Burton Borrok]

Dear Kathy,
If you’ve been reading the boards of late you know I have been in renal failure a couple of times these last few months. My creatinin level a couple of weeks ago was 4.4 – I’m getting another blood test tomorrow, and my renal function now is down to 18 to 20 %.

I had my fourth heart cath the end of May 2003, I was pre-hydrated for it and given a stinking, evil smelling liquid twice a day – three times before the procedure and for two days after. This normally one hour procedure ran for three hours each over two days, and I came down with pneumonia, my BP dropped to 70/40 and my kidneys still almost failed. They had to stop after three hours the first day because of the overload of dye.

Just to make the plot a little more interesting I also have diabetes. I’m now moving past 250 units of insulin a day, and hope to hold the line at three hundred. (Obviously I am somewhat insulin resistant.)

With Lisa’s direction I tried to see Dr. Pravin Shah, but my insurance just wouldn’t cover it. I saw Cynaburst’s cardiologist in LA instead. If I might voice my own personal opinion, I would strongly suggest telling your cardio that you want a second opinion first, and go see Dr. Shah as soon as possible. From what you posted, this is neither the time to stand still, nor to jump off the cliff. Go see Dr. Shah and see what he proposes.

And one more thing – please don’t wait so long between postings. I am very interested in hearing what happens with your problems. We seem to be more or less paddling the same canoe. On Jan 12th I am having a shunt or fistula (connecting an artery to a vein) done to prepare my arm for dialysis. Whoopee altogether. Three four hour sessions a week - What joy!
Burt

[Reenie]

Kathy, you don't have to have the EP test to get an ICD. They have proven that the EP tests are of minimal value to an HCM heart since everything is just a little different in there for you. Just because they can't produce the arrhythmia doesn't mean it can't happen. Below are listed the 5 major risk factors. Hope this helps.

1. family history of sudden cardiac death
2. history of fainting
3. history of ventricular tachycardia
4. adverse blood pressure reaction during stress test - not rising appropriately
5. septal measurement of 3 cm or more

Reenie

[kathyn2]

Hi Burt, boy it is amazing what our bodies can do and we keep on chuggin along. I am sorry about your renal failure. They say mine failed due to some unknown autoimmune disease. Sometimes I wonder if 90% of the doctors know anything. Its too bad you had to have those tests with the dye. I am trying hard to avoid that as I know the dye is nephrotoxic. I imagine your kidneys might be failing due to your diabetes. I don't have that (yet) but we sound sort of like twins!!

I did talk to Lisa today and we agreed to NOT have this pacer/icd put in down here. I am going to go see Dr. Shah and see exactly how he thinks I am coming along with my hocm and see what he recommends. Even if he recommends and icd, I do not think I will have the pacer set. Dr. Shah already told me not to have any EP studies done so that is definitely out. Thanks everyone for your help and answers.

Thank you also Reenie. It is good to see you again. You will be seeing alot more of me now.

[Burton Borrok]

Hi Cathyn2,

(I always thought it was ‘Cathyn too?’)

Yeah, that heart cath from **** in May 2003 was followed by a renal artery angioplasty in July and an iliac angioplasty in August. (I picked up six stents that year.) I also have familial Hyperlipidemia which is why I keep filling up with blockages. In March of this year I had another angiogram – must have had a dozen of those so far, and everything checked out fine. Only used a little dye for that one.

I had my legs checked again a few months ago, as per the interventional radiologist’s request, and still had ample blood flow – but lately I have had a lot of pain, and trouble walking. I find myself limping and staggering a bit. To tell you the truth, I don’t know if it is the blockages or the degenerative arthritis. (It’s getting so even I have trouble keeping things straight.)

I was glad to hear that you will be posting more often. How about – you tell me yours and I’ll tell you mine – OK?

Reminds me of the story of a man who stepped in front of a bus to commit suicide, only to find the bus was going in the other direction. He then threatened to sue the bus company for ‘misdirection’. Some days are like that. Think I’ll go to MacDonald’s and get a nice hot cup of coffee – to go.

Burt

[Rene' Koenig]

Kathy,

I had an ICD/pacer combo. implanted 3 weeks ago. I felt pretty much like you do for months prior. Went to the ER one morning because I felt horrible (again!) Went into cardiac arrest 2 minutes after I walked in the door. Thank goodness I was in the right place at the right time.

Mine paces me 100%. It's such an odd, but good feeling having a "regular" heart beat again, and not feeling dizzy and like I'm going to pass out all the time. Almost forgot what that felt like! :D

Glad you decided to listen to a specialist. If he tells you it's necessary, then by all means listen to him. I'm still new to the "ICD world", so I don't have any wonderful wisdom to share!

Rene'

[kathyn2]

Thanks Rene, can you or anyone tell me about the procedure of having one installed? The pain levels? Whether you have to be put out or if you can just have a local? How long it takes etc. This nurse I spoke with mentioned being put out twice and that really bothered me (I get very ill...not to mention the bad effects on my bad kidneys!

[jujemendoza2002]

Hi, I just had mine icd replaced for the first time :roll: , I had mine done at ccf both times :D , and I trust all the doctors I see there, they are a very good team, they will give you some drugs to make you comfortable :D , like in a twilight and go up though your grion area, if your having a ep study (which I did the first time) and run a small wire up to your heart, of course you get a local shot in the grion area so that you don't feel anything and you will be in and out of it, they will try to see if you will go into vt and if so, they would the put you to sleep just for a few minutes and deliver a shock to convert you and then implant the device if thats whats need at that point, I didn't remember them putting it in, I woke up weeping and groggy, although I had other reasons on my mind to make me weep more at that time, and they gave me pain meds to keep me comfortable, because of them going though the grion, you must lay still for a while like at least 4 hours, to make sure you don't bleed and have time to let the area start to heal, they put sand bags on my leg to keep me still, really that was the hard part. I had bruising and soreness for a few weeks after and it did take time to get used to, but like everyone said it becomes part of you and after healing up the only thing I notice is I stay hugged up with my favorite pillow at night, so I don't end up uncomfortable. For me it boils down to life or death :roll: , with a family history of sd and a son that died at 6 from vt :cry: and thru the ep study i found I was easly induced to vt :cry: , although in the last 3 years I have never had a shock :D . I am till grateful and the pain is mild-moderate for the first day or two, but well worth it. :D

[Reenie]

When my husband got his ICD they didn't do the EP study at all, therefore no incision in the groin. They just made the incision in the upper left chest near the collar bone, inserted the lead through a vein, and made a pocket to put the device into. When they brought him out it was about 1 pm or so. He went home from the hospital the same day, although I think that's somewhat unusual. He didn't take anything more than tylenol or motrin for the pain.

Reenie

[kathyn2]

Julie, just so you know, my hocm specialist, Dr. Pravin Shah, does not recommend the EP studies. Maybe since you had the first one installed 6 years ago that was what they did then. If I get one (which I think is a real possiblity) I am not going to allow that! Did you have to get the ep study on the one you just got? What/where is ccf?

[kathyn2]

Reenie, did your husband have general anesthesia when he got his icd?



When my husband got his ICD they didn't do the EP study at all, therefore no incision in the groin. They just made the incision in the upper left chest near the collar bone, inserted the lead through a vein, and made a pocket to put the device into. When they brought him out it was about 1 pm or so. He went home from the hospital the same day, although I think that's somewhat unusual. He didn't take anything more than tylenol or motrin for the pain.

Reenie

[Art Geddes]

Kathy,

I had an icd/pacer put in Mar 98 under similar circumstances. My 24 hr holter caused the ep to put me in the hospital because of the v-tach. They did an ep on mon but I surprised them first by going into v-fib as soon as they got me on the table. Took multiple shocks to restore a rythum. 7 years later the ep crew still remembers me as Mr Excitement.
They are pacing DDD pacing me and it has reduced my mitral regurg which is good but I am still bothered but a lot of chest pain, SOB light headedness after squatting, but hte graying out/ pre syncope has disappeared. I am not satisfied overall because I can not do what I want, ie walk 100 yards so I am probably going to go to Mayo for a consult. DDD pacing overalll has not been succesfull to alleviate symptoms but pacing in general has solved my v-tach problems.
Art
PS: I decided not to mention my son here as his icd had to be replaced because of endocarditis, a rare complication of any implant. He is doing ok now.

[Reenie]

Reenie, did your husband have general anesthesia when he got his icd?



When my husband got his ICD they didn't do the EP study at all, therefore no incision in the groin. They just made the incision in the upper left chest near the collar bone, inserted the lead through a vein, and made a pocket to put the device into. When they brought him out it was about 1 pm or so. He went home from the hospital the same day, although I think that's somewhat unusual. He didn't take anything more than tylenol or motrin for the pain.

Reenie

Yes, they put him clear under for the implantation.

Reenie

[jujemendoza2002]

Yeah the doctors released me from the hospital like 4 hours after my replacement, and didn't give me nothing more than the tylenol or motrin, I feel pretty crappy though, I think they could of giving me something a lil stronger than tylenol or motrin at least for the first couple days, I'm sensitive to pain I guess.

[kathyn2]

Jen, I hope you feel better soon. You are making me dread this if I decide to get one. ugh

[Laoshur]

Kathyn,

Don't worry. For most of us the pain is a little unpleasant, but nothing severe. I took some Tylenol the first day or two and then nothing. Riding in a car was unpleasant for the first couple of days. But four days after the implant I rode in a car from Richmond VA to Louisville KY without any severe problems. I would not recommend it, but it was possible and not very unpleasant.

Rhoda

[jujemendoza2002]

Please don't take me wrong the implant is well worth it, just a lil sore.

[Nigel]

After the implant, how long does it take for the pain to go away? Are there medications that help?

Thanks,

Nigel

[jujemendoza2002]

I guess just the tylenol and just being careful not to bump it or move around too much the first few days, i think it helps to sleep with a body pilllow to keep from rolling over on it. alot of time.
:roll:

[Rich Miller]

Hi guys,On 11/4/04 I had a new medtronic maximo dr put in , only needed tylenol for pain and it was only sore enough for tylenol for 3 days .I also am paced 100% which has lowered my gradient rather well ,but it has also weakend my heart ,ejection fraction is less than 50% now , but no syncope and no shocks for allmost 2yrs. Rich

[kathyn2]

Rich, are you concerned about the heart weakening? Do you need to be paced 100% of the time? I have a doctor that wants to put in an icd/pacemaker and pace me to relieve obstruction but I am afraid of the heart weakening. So far I can't find any literature on it How do you know this has happened to your heart and is it worth it?

One more question is what causes the syncope that seems to be prevalent with this disease?

[shirleymahoney]

Kathy

I was paced for over a year and i think the only thing i got from it was an AV Block and it didn't reduce the obstruction any so, i think they are finding that pacing isn't working like they hoped, but i would not give up my defibulator for anyone it is my best friend and it will be yours too, i don't even know mine is there most of the time unless i hit it or something and even then it isn't too bad

Have a great weekend

Shirley

[Rich Miller]

well I had a cath done and my cardio told me this about it getting weak.is it worth it ,well so far so good.I have a lot more muscle than i need so i dont want it to be real strong I guess .I feel good and can do more, just have to keep a slow pace and take lots of breaks.Rich

[shirleymahoney]

I also wanted to add my heart failure has gotten worse my BNP was 686 a couple of months ago well you take care and keep in touch

Shirley

[mimoo55]

Hi Kathy,
We just got home last night from my husband having an ICD implant. He had it done Monday at noon and we were dismissed on Tuesday at noon. He already had a pacemaker, so the dr. only had to add one lead and change the device. He had some Tylenol #3 a couple times when he went to his room then he has had regular tylenol a couple times since then. We missed our flight home and took the 'scenic' way home by way of Dallas (we went over our home twice) and he only needed tylenol one time. I said that to say it was a long day and he only had mild discomfort. It is sore at the incision sight and he cannot lift his arm over his head for six weeks. I think the hardest thing for him is he cannot shower yet. I will also say we were advised not to have the ep study, because they are not beneficial for HOCM. I wish the best for you. Paula

[kathyn2]

Thanks Paula for giving me the scoop. It doesn't sound too bad...but not good either. LOL Let me know how your husband is tomorrow and if he is feeling much better. I hope so!