[Worried wife trying to cope]

Author: karla (---.proxy.aol.com)

Date: 05-26-02 07:52

Hi, All,

My husband was diagnosed just last week, after the doctor admitted him to hospital. He was seeing the doctor for something else, and just happened to mention his episodic 'chest pains'. After the doctor did an EKG, it was "do-not-pass-Go" go directly to the hospital. They did another EKG, Echo and transported him to another hospital for heart cath. They found no blockage and we assumed (duh!) things were all ok - even though the doctor had mentioned 'abnormality'. This cardiologist LEFT the hospital without speaking to me and we had to wait until seeing him in his office on Tuesday for the diagnosis. (Which was a 4-day wait)

We were just blown away by the diagnosis. I think we were anticipating the 'oh, it's nothing - here's some pills, change your eating habits, yada...yada" but that was not the case when he muttered the dollar word, hypertrophic cardiomyopathy". All so scary as we tried our best to decipher what he was saying (he has a very heavy accent) and heard words like "Sudden death', "get your son/family tested" and "your heart could blow out". We just got into our van and just sat and looked at each other dumbfounded.

I have spent the past week trying to sort this all out. Not getting much sleep, mind you! This site has been most helpful. It's just been such a scary thing to process that my 49 year old husband has such a complex heart disease. I think he's in a 'denial' state somewhat...he finds it hard to believe and I don't think he has been able to 'process' and accept. I have done my best to reassure him and be 'up' for him, but its not easy. On a personal level, I don't work outside the home - I have a home-based business which I have NOT been able to work because I am so stressed over this.I can't seem to focus on much of anything.. I feel like I am carrying this burden alone. No ONE has even heard of HCM that I know - and I feel sometimes like I"m falling and can't get my footing!

Our lives have been changed, and there are so many questions we need answers for. He will be fitted for a heart halter next week for 24 hours, and we aren't even sure why or what they are looking for now. (can u tell I don't have much confidence in this cardiologist? Yes I plan on finding another one)

Tell me -what do you spouses/loved ones do or say? What have you found helpful? Hubby feels frustrated - and I think even guilty at tiring so easy....from what I have read, it's just part of it and to be expected. How do you help them manage/cope?

Would love to hear from you!

Thanks!

Karla

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

[Re: Worried wife trying to cope]

Author: Kat (---.proxy.aol.com)

Date: 05-26-02 08:16

Karla,

You do need a doctor experienced with HCM in particular. I have read that the HCMA office will recommend a specialist in your area if you call them at (973) 983-7429. But you'll have to wait until after the weekend because of the conference!

Of course neither of you have had time to process things yet, let alone get to the acceptance stage. I was diagnosed years ago and there are still days when I'm in denial about the limitations I have to face.

The Holter monitor he will be wearing next week is to make a record of any arrythmias he may experience. It's just like a very extended EKG. He will probably also be asked to keep a record of any times he had chest pain or other symptoms, and what he was doing at the time, which the doctor will correlate with the monitor's results.

It would be my guess that his general fatigue is probably caused by the HCM, it is one of the common symptoms of HCM.

Good luck to you both,

Kat

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

[Re: Worried wife trying to cope]

Author: Kay Ruth (---.as0.wlby.oh.voyager.net)

Date: 05-26-02 09:21

Hi Karla,

My husband went undiagnosed for thirteen year suffering with chest pressure and pain.Thankfully they found your husbands and you will get the help you need ,make sure you get a Dr. up on HCM .I know its a stressful time for you ,try not to worry too much it only makes things worse .Mine is in Cleveland clinic right now having a myectomy done .This web site helped us so much when we first found out about Jim's HOCM. His cardiologist at the time they found it left the hospital without ever explaining anything to us .One of the nurses got on the inter net and got us some information .Good luck to you , and you will learn to cope I'm sure ,you need to be strong for your husband. He will learn how to deal with doing things a little slower than before just like mine did.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

[Re: Worried wife trying to cope]

Author: Judith (---.atlantic.net)

Date: 05-26-02 11:42

Dear Worried:

I am also afflicted with HCM. After quitting my job as an OR nurse due to lack of breath and energy to do my job in 1992, I "retired" to care for my late husband who I lost in 1995. By then, I was too symptomatic to even think of returning to work even though financially I needed to.

During this past year the syptoms became considerably worse to the point that I could not walk out to the end of the driveway and back to get the newspaper without stoppiong 3 times for breath.

In February of this year, my cardiologist sent me to Emory University Medical Center in Atlanta. He referred me to Dr. Alexander who is department head of the cardiology unit there. After one afternoon of testing and seeing three doctors, they had determined that I could be helped by a relatively new procedure called "septal ablation".

I was admitted in March for the procedure that was done via the same route as a heart cath. I was awake for the whole procedure which took about 1 1/2 hours. They thread the catheter into the left side of the heart and inject the overgrown tissue with alcohol--thus killing that portion of the invading tissue. This causes shrinkage of the tissue allowing the blood to again flow normally. There was moderate pain on injection but that was controlled by pain killers injected as I needed them.

Two days later I walked out of the hospital, down the stairs, across the parking lot and--no shortness of breath!!!!! Over the last two months it has improved on a daily basis. I have color in my face; I can make the bed, brush the dog and most important of all, I have been able to return to my work as an RN just this week!

If I can be of further help to you and your husband, please let me know. I feel so good that I want the world to know. The staff at Emory was so nice and the care so personalized for such a big facility that I look forward to going back for my 4 month checkup. I am 66 years old. In January of this year, I felt 80--now it is more like 50!

Good luck!!

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

[Re: Worried wife trying to cope]

Author: sarah beckley -moderator (---.dsl.mindspring.com)

Date: 05-26-02 12:17

HI

The most important thing for you both to understand right now is that the numbers on sudden death and HCM are over-stated. If your doctor is not an HCM specialist, he probably doesn't know that the number is closer to 3% than 20% (percentage of HCM patients who die suddenly each year).

Furthermore, in order to determine the risk of sudden death, a doctor looks at many factors: 1. personal history of heart attack, 2, personal history of ventricular tachycardia, 3. family history of sudden cardiac death, 4. blood pressure during exercise, 5 history of fainting, etc. Only if you have 2 or more factors should you be evaluated for an implantable defibrillator which is a device that shocks the heart back to normal if it tries to go haywire (ventricular tachycardia or fibrillation).

Most HCM patients live long full lives without any risk of having their heart's stop without warning. It is unlikely that your doctor has the credentials to evaluate your husband's condition. In addition, Lisa has told me stories about doctors who think that all HCM patients just drop dead at some point ---which is just not true. HCM differs widely from patient to patient and yes, there are some people who may eventually need a new heart, those are rare and most of us just take meds or perhaps have a myectomy or an ablation --two procedures that can make a huge difference in quality of life.

SO --as it was mentioned before, please call the HCMA office, but next weekend is the annual meeting, so Lisa is swamped and can't return calls until after. However, as soon as she is free she'll be able to help a lot.

I HIGHLY recommend buying the HCMA Patient's Guide to HCM for $25 that you can get by sending a check to the HCMA at the address in the membership section or calling and giving Ellen your credit card #. It will ease your mind considerably.

best,

Sarah

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

[Re: Worried wife trying to cope]

Author: sarah beckley -moderator (---.dsl.mindspring.com)

Date: 05-26-02 12:21

Dear Karla

Another recommendation I have is to read all the posts on this message board to get an idea of the issues we all face. And there is some good advice about diet, exercise, etc.

Sarah

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

[Re: Worried wife trying to cope]

Author: Lisa Salberg (---.dyn.optonline.net)

Date: 05-26-02 12:49

Dear worried,

This is all new to you and your husband and is going to take some time for you both to adjust for you both to adjust to living with chronic illness.

Step 1. Get Educated.-- and that's just to your doing by using this message board.

Step 2. Arranged treatment program with a knowledgeable physician, if you need help finding one call the HCMA and will help direct you to one.

Step 3. Get on with living your lives.

Regarding the postings in response to your original post, they are filled with many valuable pieces of information and experiences... learned from them.

A slight correction to Sarah's postings regarding ICD indications, there are several risk factors that may indicate whether someone is at high-risk for sudden death. There is concern testing how many of these risk factors should be evaluated before implanting a device, some physicians suggest one risk factor is enough others prefer to see two or more. I believe that an educated patient given all available treatment options can make the proper decision for one's own health if they work closely with their health-care provider.

Further, and stated above and in many other postings on this message board I can hold my position that it is very important for a patient with HCM to be evaluated by specialist in the field.

I look forward to speaking to you can answering more of your questions over the telephone...I hope you can understand to this next week is going to be extremely busy and will not be taking any calls until June 5th. However, if you should have an urgent question for your husband is an urgent need of care from a specialist do not hesitate to call the office and I'll find the time to assist you... please remember if your husband is having any severe chest pain, blacks out , or has any other severe symptoms please call your local doctor or go to an emergency room--- I highly doubt this will occur --- but better safe than sorry.

Best wishes,

Lisa Salberg

President

HCMA

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

[Re: Worried wife trying to cope]

Author: john jordan (---.public.svc.webtv.net)

Date: 05-26-02 21:56

hi, kay, im in need of info on cleveland clinic doctors who do myectomy. i have two blockages and two valves to be replaced as well as need myectomy. ive been told to go to mayo clinic. i live 2 1/2 hrs. from cleveland so am interested in info if u can let me know. thanx, john

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

[Re: Worried wife trying to cope]

Author: Sherry (---.ras11.floca.tii-dial.net)

Date: 05-27-02 19:49

Dear Karla,

I'm also a worried wife. Been there done that 14 months ago. Our stories are very similiar. My hubby (Tommy) was feeling poorly on and off for about 3 years. He worked as a framer building houses in the Florida heat for about 23 years. He had asthma real bad as a child (in & out of hospital) until about age 12. From then on he was one of the toughest, **** raising, "can't anything hurt me" rednecks from South Florida.

Meeting me 8 years ago tamed him down some. He worked 7 days a week, 14 -16 hours a day. He'd like to drink beer with the guys after work, if ya know anything about construction workers, some of them tend to drink more than we think they should. All of his crew fit that criteria.

We decided that I better go back to school, to get trained. The heat seemed to be disagreeing with him and he spent many nights up with shortness of breath and chest tightness. He always contributed this to his past history of asthma. As I was taking my final exams in one of my classes, I received a call to meet him at a local E.R. dept. I arrived when they were hooking him up to the telemetry. They kept him over night, ran a ton of tests and told us he had "hypertrophy of the left ventricle due to many years of uncontrolled hypertension". There english version - enlarged heart due to high blood pressure.

We bought that for a few weeks. Tommy kept getting worse no matter what medicines they had him on. I finally bugged the Cardiologist enough to due a cath. That's when our stories are exactly alike. The words that cardiologist spit out after the cath, threw my head into a spin! It took me two weeks to learn how to pronounce it right! No one knew what we were talking about. We ended up knowing more than the cardiologist on our follow up visit. Imagine that!! The internet taught us all we knew. Every where we searched, the words "SUDDEN DEATH" kept poping up.

It scared the tar out of all of us. The initial diagnosis of this disease tends to throw us into a grieving process. We all deal with it diffrently. It took a major, MAJOR blow up on Father's Day (of all days) last year to make our family realize that we needed to talk as a family about this. We all expressed our concerns, how we felt, and our ideas on how to help one another. It was the best thing we ever did!!

As for how to help support your hubby, just talk to him and be there for him. Most of the wives I've met on this site have agreed with this. The guys go through a period of feeling worthless. They can't support their families, they get uptight watching the wives work so much to make ends meet. This is a normal process and when the ones of us that have children, remind them of how much help they are with the kids, it seems to help some.

Tommy's been through 2 Alcohol Ablasions and An emergency myectomy with a triple coronary artery by pass, and a reconstruction to his aorta in a very short amount of time. His medical decisions to accept the doctors advice or not was totally up to him. I told him how much that I loved him, but it was his body and he had to make the final decisions. I have stood by him, whether I agree with him or not. This makes a major differance to him. I respect the fact that it is his body that is going through this and that no matter how much I want him with me always, he has to decide what to do.

It is tough on days, that I'm tired coming home from working 14 hours, and I have to cook and get the kids ready for bed. Due to the fact that he's been in bed most of the day. Then I try to remember that he can't help it. I thank God that he is still with us and ask that he guide us to the next day.

It is very hard for people to live with chronic illnesses. The entire family has to learn how to adjust and readjust to life from time to time. It does get better. You are welcome to e-mail me at any time. There are several of us wives that e-mail each other weekly. It help to vent or just say hey!

God Bless you and yours,

Sherry

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

[Re: reply to John]

Author: Kay Ruth (---.as0.wlby.oh.voyager.net)

Date: 05-27-02 20:24

Hi John, THe dr you have to see first is Dr Lever,he knows all about hcm.Jims surgeon was Dr Smedira , Dr Lever sets everything up .Jim was with University hospital and they wanted him to go to Mayo clinic also. We live 20 mins. from the cleveland clinic .Don't expect to get an appointment right away , it takes a few weeks. Jim was supposed to come home today but he has some a-fib they have to control first otherwise the procedure went great. Sounds like you need more than a myectomy, Jim had no other problems like you have. Your Best bet is to call the clinic and they can steer you in the right direction,they have many great Drs and surgeons.Good luck to you and keep in touch if I can answer any questions .The clinic doesn't leave many unanswered ones they are extremely thorough. Kay.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

[Re: reply to John]

Author: Terri Wallace (---.proxy.aol.com)

Date: 05-28-02 14:13

Dear John,

Cardiomyopthy is only one of my heart problems. Along with ventricular fibrillation, and 4 stents. I have lived through a heart attack followed by 2 episodes of sudden cardiac death, and a coma. My advice to you and your whole family is to find the best and compassionate doctor who specializes in cardiovascular diseases. Be thankful to God that they found your problem early. Follow your doctors advise. You can live with this. Your whole family needs to learn CPR if they have not already. Read everything you can on your heart problem. This way it is easier to talk to your doctor and understand what they tell you.

My final words of advise are to seek God and pray. This way you can avoid depression. These words may be strong but you are stronger! I would have loved to have had this advise 3 years ago.

I wish you well and if you have anymore questions or concerns please feel free to email. God Bless You!

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

[Re: reply to John]

Author: lisa (208.47.172.---)

Date: 05-28-02 14:51

To the wives/significant others,

A friend sent me this email, I share it with you. This is a reminder to men and woman alike as to what it means to be together.

"When I created the heavens and the earth, I spoke them into being. When I

created man, I formed him and breathed life into his nostrils. But you,

woman, I fashioned after I breathed the breath of life into man because your

nostrils are too delicate. I allowed a deep sleep to come over him so I

could patiently and perfectly fashion you. Man was put to sleep so that he

could not interfere with the creativity. From one bone, I fashioned you. I

chose the bone that protects man's life. I chose the rib, which protects his

heart and lungs and supports him, as you are meant to do. Around this one

bone, I shaped you...I modeled you. I created you perfectly and beautifully.

Your characteristics are as the rib, strong yet delicate and fragile. You

provide protection for the most delicate organ in man, his heart. His heart

is the center of his being; his lungs hold the breath of life. The ribcage

will allow itself to be broken before it will allow damage to the heart.

Support man as the rib cage supports the body. You were not taken from his

feet, to be under him, nor were you taken from his head, to be above him.

You were taken from his side, to stand beside him and be held close to his

side. You are my perfect angel...You are my beautiful little girl. You have

grown to be a splendid woman of

excellence, and my eyes fill when I see the virtues in your heart. Your

eyes...don't change them. Your lips...how lovely when they part in prayer.

Your nose...so perfect in form. Your hands so gentle to touch. I've caressed

your face in your deepest sleep. I've held

your heart close to mine. Of all that lives and breathes, you are most like

me. Adam walked with me in the cool of the day, yet he was lonely. He could

not see me or touch me. He could only feel me. So everything I wanted Adam

to share and experience with me, I fashioned in you; my holiness, my

strength, my purity, my love, my protection

and support. You are special because you are an extension of me. Man

represents my image, woman my emotions. Together, you represent the totality

of God. So man...treat women well. Love her; respect her, for she is

fragile. In hurting her, you hurt me. What you do to her,

you do to me. In crushing her, you only damage your own heart, the heart of

your Father, and the heart of her Father. Woman, support man. In humility,

show him the power of emotion I have given you. In gentle quietness, show

your strength. In love, show him that you are the

rib that protects his inner self. Did you not know that WOMAN you are

special in God's eyes? Now we really know!

Send this to ten of thewonderful women you know - to bless their day!"

This concludes the email... I think we all think of the heart.... a little differently then it was ment for this ...and therefore it means even more.

best wishes,

Lisa Salberg

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

[Re: reply to John]

Author: Elizabeth (---.fuse.net)

Date: 06-04-02 09:20

Dear John,

Kay is right. At the Cleveland Clinic, Dr. Lever is the one to see. I had a myectomy last July at the Clinic and the doctors and nurses at the Clinic were amazing. I had the best care and my procedure was a tremendous success. Because so much of the fatigue and dizziness and shortness of breath has been relieved, I really feel as though I've gotten my life back. Good luck!

Elizabeth

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

[Re: reply to John]

Author: john m. jordan (---.public.svc.webtv.net)

Date: 06-04-02 20:14

thank you to all who have posted as well as all who have emailed me. my video of heart cath is on its way from pittsburgh to dr. lever and dr. smedira. my reports from cardiologist in pitts. are in cleveland already so once all is evaluated i will hopefully schedule the heart surgery. it has been a busy two weeks since the cath trying to get all this info to the right place and digesting the info i have been given. this site has been most helpful.thanks again to all, john

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

[Re: reply to John]

Author: Kay Ruth (---.as0.wlby.oh.voyager.net)

Date: 06-04-02 20:55

Hi John.Glad you got fixed up at the clinic okay.The last two weeks have been hectic for us . Jim came home last Wednesday he has been having trouble with a-fib , so we are going in tomorrow for a cardioversion. We are hoping that does the trick along with the medication. You will be surprised how fast they get things going there, so very efficient. Keep in touch.

Kay.