Tuesday, October 5, 1999

In less than a month, November 9th, it will have been a full year since my open heart surgery. I am about to print up another batch of The Bum Ticker books and as usual before printing, I proof read it again cover to cover. I never fail to find missing words, typos and grammatical errors. It is also a good exercise for me to relive the experience every once in a while and be reminded how extraordinary the interactive nature of this journal has been.

Another reason for me to read it over again is that my father, Bernie was operated on last Friday to remove a cancerous tumour from his colon. This was a very scary experience for him and all of us family members. Since my surgery not so long ago, we are unfortunately becoming very good at this (not really). It's different for me though since I am now on the other side of it. As so many had said, that the person actually undergoing the surgery has the easy part, while those waiting and worrying have the hard part.

My father is doing alright. He came through the operation with flying colours and the doctor is very pleased with his progress so far. He believes that he removed all of the cancer.

Dad has a great attitude. He does not complain and is always cheery and kind to the nurses. He's a tough cookie too. Being a survivor of the concentration camps he seems to have a very high threshold for pain and is not prone to complaining about any physical discomfort. I personally think he is lying when he says he doesn't hurt, but he still seems to hardly use the self administered morphine. It's been four days since he's eaten or had any beverages whatsoever and he doesn't even mention his hunger or dry mouth. Most of us would be screaming bloody murder! We hope he can start on liquids and some food tomorrow.

He should be home within the next week and on the road to recovery. I know from experience how good that sounds, but really how hard it will be, not just for him but for my mom too.

Right after the operation we were allowed to visit him and everyone said he looked really good. Way better than I did immediately after mine. I sure didn't think so. He looked so small and vulnerable. Strangely, I had a very uneasy feeling in my chest and I could feel my incision area almost throbbing. I was actually feeling sympathetic pain for him. All that day and night my almost healed ribs ached. It was very weird and emotional for me. When I visit him in the hospital, it really brings back memories of my time and reminds me of stuff I had forgotten, or perhaps just put out of my mind.

Anyway, I feel for my mother who has now gone through two of these major stressful incidents in less than a year. She seems to be coping pretty well though and I hope she'll be alright. She's lucky to have my sister and brother and their families as well as many friends and relatives to lend their support should she need it.

We all hope for the best.

November 8, 1999

It has now been over a month since my father's cancer surgery and thankfully he is doing quite well. Fortunately his problem was discovered early and the cancer was removed successfully. The tumour was minute and the best kind of cancer (if there is such a thing) and he won't even need any radiation. He will need a few more months of healing before he has one more minor surgery to complete the process for him. Then he should be fine. He is in pretty good spirits, driving around and about town, and hopes to get down to sunny Florida soon to spend the winter there getting his strength back.

It will be good for my mother to get away to warmer climes. This has taken its toll her and she needs some rest. She's been a wonderful nurse but it is not easy. This has been a true testament of their love for each other.

Happy Anniversary to Me

So it's November 8^th. I made it. Still ticking. One year. One year ago today I was sitting in this very spot here at my desk pounding on the keys of this old laptop. Scared out of my mind. Wondering about what I was really in for. Whether I would live or not.

What a year it has been. I've really come full circle. Essentially right back to the same person I was before. Well, slightly changed. I have some new parts and a beautiful scar to show for it. I also have a new understanding of the fears and trials we experience as humans that are so far above and beyond our daily routines. It makes me appreciate every new day and my luck to have been cured of my ailment, while others may not be so lucky.

Every one of us knows someone that has died from or suffers with a terminal or debilitating disease. Why must good people suffer? There is no justice in this world. Nature can be so cruel yet so sweet. I just don't get it.

Yet technology and medicine continue to advance exponentially fast. Just tonight on the news there was a story about how heart surgeons are now using robot arms to perform open heart surgeries such as the one I had. With these robots they enter the body through three little holes in between the ribs, eliminating the need to cut the sternum and spread the chest open. This is a really big deal as the healing of the bones is actually the worst part of the entire procedure. They find that the robot is also more precise in its movements, as it moves much slower than the surgeon's hand. This is encouraging news for me. When my little piggy valve finally wears out in ten to fifteen years it is likely this advancement and others will be available and this type surgery will be a routine, minor event. Go figure.

So on November 9^th, tomorrow, one year later, Dory and I are going out to dinner at Canoe, one of Toronto's trendy best restaurants. Located on the 54^th floor of a downtown office tower, we are going to enjoy the view, give thanks for our most fortunate lives, and celebrate our brains out.

From: Mario

July 29, 1999

Hi Steve it is always nice to hear from you. It has been almost two months since my homograft and I wonder where time flies. You are right it seems like a dream. Sometimes I ask my wife to go over what happened in the hospital because I don't remember much. I saw my surgeon last week and he put me on a one year follow up> Instead of being happy I was space for a year I felt a little scared because I felt so secure in seing him often I told my wife that if anything happens now I'll have to go to the er instead of him. Steve I still feel insecure every time I look at the scar> Believe me I still didn't test how hard I could push my heart because I do not want to "damage' it. Time will cure all that I guess. Just to let you know that you have one e-mail in your last installment and you wrote anonymous well it happens to be from Todd Williams because I just got an e-mail from him and I know he has sent his blood to tested> One last thing before I go when I saw the surgeon I asked if I received any blood and he said I received 2 pi of blood that was a bit worrisome funny thing is I didn't see any blood hanging from my bed in the hospital i guess they have a new way of inserting it. Keep in touch and all the best....Mario

From Barbara Steele

July 22, 1999

Wow - you are having quite an impact out there - congratulations! Seems to
me you have found a way to share your humanity - as Martha Stewart would
say, that's a "good thing".

Although the Heart and Stroke Foundation doesn't have the resources needed
to officially publicize what you are doing (lots of reasons as explained
before), I think it's great. A writer contacted me asking if I could refer
her to a heart patient that would be willing to be interviewed for an
article on heart disease, and I sent her your way (I hope you don't mind).

I'm glad to hear you are doing well and still sharing your experience.

Barbara Steele
Manager, Communications
Chef des communications
Heart and Stroke Foundation of Canada/Fondation des maladies du coeur du
Canada

Doug posted the following article in the Heart Patient Chat Centre
Dated : July 23, 1999 at 09:51:12
Subject: Re: Aorta at 5.7cm

: : Hi, I'm 33 and last year had an aortic aneurysm repaired and my aortic valve repaired. My aneurysm was measured at 5.5 when they told me to get ready for surgery.

: How did you detect that you had an aneurysm? Last month my mother died as a result of an Aortic Aneurysm. She had no symptoms until it was about to rupture. The Doctor's thought the pain was from kidney stones until they X-rayed her. She had a 5cm Thoracic Aortic aneurysm. The Doctor decided to delay surgery till noon the next day... but the aneurysm burst that morning while they were taking more X-rays.


Paul, I am truly sorry to hear about your mother. Your message hits home because I had aortic valve replacement two years ago. I was 24 at the time. I had no painful symptoms. I found out about my condition by an unbelievable string of events. Before I knew anything was wrong, I had gone to give blood at the blood drive. They told me they were getting a very strange blood pressure reading and could not take any blood from me. So I saw my family Dr. who suggested that the heart murmur I have had since birth would probably account for that strange reading. Just to be on the safe side, he scheduled me for an echocardiogram four days later. I went about my week as a normal one, Excercising, golf, softball. Finally on Friday I had my echo. done, and they called me two hours later saying I need heart surgery immediately. I couldn't believe it. I felt perfectly normal. However , my aorta was measured at 10cm. Some Dr.s at the hospital treated me as a freak of nature. They gave me a mechanical valve replacement and all is well now. I hope that someday, they would be able to detect these types of things. Maybe an echocardiagram should be required every ten years for everyone. I'm not sure. Best wishes to you and your family. ....Doug

From: THOMAS D. SNYDER

July 24/99

Steve, what a great web site. I have stenosis of the aortic valve due to a
bicuspit problem. Since I am a commercial airline pilot, my very job
depends on my health. Since discovery nearly 7 years ago, the valve has
been getting smaller and smaller due to calcium buildup. My mother had her
valve replaced last year, A COW valve. She is doing fine.

I am only 40 years old and am anxious about my career since I am thinking
of changing airlines. I am also thinking maybe they can do angioplasty of
the valve instead of surgical replacement.

If you can guide me to other commercial airline pilots with the same
problems, IE. loss of medical etc.
or a web site about valve o plasty, Please let me know.

Thanks again, Tom Snyder, [email protected]

From Paul Whitmore

August 14, 1999

Steve,

I am having aortic valve replacement surgery in Milwaukee, WI on the
25th of August. I loved your journal. I laughed and I cried as the
emotions of what is about to happen to me caught up with me rather
quickly.

I hope you are doing well now nine months after your surgery and hope
you continue to thrive.

I am 27 years old, and am very lucky to be living at this point -
doctors caught the problem in a routine physical. Something I've had
all my life and nobody every heard the problem before. The
recommendation is for the St. Jude Titanium valve, and at my young age,
I believe it is the way to go.

Glad your (pig) valve is treating you well, and it's nice to see your
sense of humor when dealing with it, and writing about it.

Take care,

Thanks for the insight and for making me think a little bit during the
last hour of living your experiences through the internet and preparing
for mine.

Paul Whitmore
Milwaukee, WI USA

From: Brigid

August 14, 1999

Hi Steve. I hope you remember me. I posted to the bulliten board before
my Ross Proceudre on Aug. 3rd and you wrote back to me!

Well I came home on Monday, 6th post op day. It was a rough week -
depressed and cried a lot Tues., then stomach sick from meds on Wed. and
finally perking up a bit Thurs. Yesterday I felt great - able to move
around the house a lot and talk more easily without being winded. Today
for some reason I feel winded easily, but still able to get around. I just
went for a walk and I am guessing that I did a half mile or close to it.
The tough part is having to go to the bathroom! I am on diuretics for all
the water weight I gained (women tend to have a problem with that after the
Ross Procedure). I am on so many medications - ugh. Luckily much of the
water has left my body and I can breathe better. For the first week I felt
like I had a terrible asthma attack.

I didn't enjoy the first week. It was very difficult - hard to breathe,
hard to get around, and hard to get comfortable. Finally I am able to get
some sleep in my own bed. The first night or two home it was tough to get
comfortable - same problem in the hospital.

It is difficult to accept all that I can't do with my 1 year old daughter.
At least I can read to her and sit on the floor a bit and play and I can
feed her.

I find that my back and chest get achy. I take tylenol for that.

Well I am tired of sitting up and must rest in a chair - while typing i sit
up straight without the chair back. Hope you are well. Thanks for the
good wishes.

Brigid

From Erik Andersen, Australia

Sept 14, 1999

Steve - -

Yes, well, not really a note that told you I was doing well... other than
keeping the local bankers well happy on the mortgage front. However, it was
kinda hard to communicate much detail in a blast-a-email. Glad to report
that all is indeed going well. Everyone is happy and healthy. I'm well over
what seemed to be an all consuming passion earlier this year... it's
history... though I keep running into people whom I haven't seen in some
time or since the knife and they simply must ask, "How are you doing?" I am
touched that so many people care, but I really am getting sick of answering
that damn question! I guess I should be glad that I'm here to answer and
that the answer is good!

Hope all is going well for you, Dory and dog.

Oh, you'll be happy to note that you are on the record as an official donor
to the New South Wales Heart Foundation. Thanks again for the printed
versions of the journal. I am intending to send it to my surgeon so he can
use it for "nervous" patients. It helped me so much that I suspect, even
though it is now historical, that it will help some of them too. You should
be proud... you've obviously helped quite a few folks out there by sharing
your experience. I don't really know you, but I know you're a good man...

Peace... a good times... Erik

From : Virginia Coop-Ullman

To Steve Goldberg, Author of "Bum Ticker",

October 12, 1999

My husband, Walter Ullman, age 55, had his aorta, aortic root and part of his
ascending aorta replaced with a St. Jude prosthesis in a 5 hour and 45 minute
surgery on July 27, 1999, at University of Washington Medical Center. He has
done quite well post-op with his main complications being atrial fibrillation
for about two weeks after surgery and a low hematacrit which has finally
climbed up to 34 this past week with the help of three iron pills daily. And
although his white blood count had been "high-normal" for several weeks after
the surgery, his tests results were at 3.7 last week which is below normal.
He was in generally good health prior to surgery except for the recently
discovered defective valve and aortic aneurysm and asthma for which he uses
two medications: Flo-Nase and Flo-Ventfor the defective valve (no clogged
arteries) and had been a runner for several years. He is now taking Norvasc,
Toperol and Coumadin. His last INR was 1.6 this past Friday at which time
his Coumadin dosage was increased from 5 mg. to 6 mg. once each day. Walt
also takes FloMax for an enlarged prostate. He wants to resume running as
soon as possible, however, he has not gotten a "direct " answer yet as to
when he can return to his favorite sport. I have searched the Internet over
and have written to several sites asking for any current information or
research on this subject but to date have not received a response.
Information is available on research subjects with valve replacements using
exercise bicycles but I have not found anything on running. We would
appreciate any ideas or comments you or anyone else may have on this subject.

Thanks again for sharing your experience with us and for making the
additional nformation available to us from other heart valve replacement
patients.

Sincerely,
Virginia Coop-Ullman, wife of Walter Ullman in Seattle area.

From: Patricia Miller

October 29, 1999

Re: Heart Pages undates...Thanks!

Thanks Steve...read the rest of your journals so far....they really have helped me mind wise...I was starting to retain fluid again, but this time in my abdomen, which I think caused the double hernia I had around the naval area....I saw my local heart Dr. yesterday and he said that with the retention of fluid that I have and the pressure in the lungs, I would be at risk for surgery. So he increased my "water Pill" quite a bit and now I have to take a giant horse pill of potassium to counteract the water pill. I also have been refusing taking coumadin all these years, taking aspirin instead, but he told me I needed to start taking the coumadin, if I plan to stay alive without a stoke. So, last night, I sat myself down and said that's it. You must start taking it even if you don't want to. He says surgery will probably be 1 or 2 years down the road and probably at Cleveland clinic. I am located 30 miles east of Columbus, Ohio. At least that won't be to far from home when the time comes. Keep it up with the journals and the email from other people. You find out really quick that yours is not as bad as someone else and we will survive and make it.

Thanks again,

Pat

From Paul Whitmore

November 1, 1999

Steve,

So, it's been a few months since my previous email, and I have successfully
undergone valve replacement surgery. My operation was on a Wednesday, and was
home by Friday. Rather quick I believe, but the doctors and nurses know what's
best I suppose! I am doing well, although I have a bit of a cold.

I was feeling much better than after the surgery than I ever had i years. I
stopped taking the pain pills immediately upon returning home, and have never
felt better.

The adjustment to the constant clicking (because of the titanium valve in my
heart) has been rather slow, as I still hear the valve opening and closing with
every beat of my heart. But, I guess, when the clicking stops, there's trouble
ahead so I've been slowly getting used to it. My wife sees (or hears) it as a
comfort, so that's good I guess.

I'd like you to post my email address or my name and address as something people
can contact when they have questions about the surgery or the recovery time.
I'm much younger than most, so my story is a little bit different than many will
encounter, but it's still valuable information, and worthy of discussion.

When I read your journal before my surgery, I felt like I had found somebody who
had gone through this before. Although I don't know you, and had only been in
contact through email, it was still comforting. I'd like to be there to help
somebody else.

Please post or pass this along to anybody looking for help or questions about
their situation.

Steve, Thank You.

[email protected]
Paul Whitmore
Milwaukee, WI USA, 53222

(Here's a good one to end off with.)

From Ronnie

November 24, 1999

Hullo!!!!!
Wanted to drop you a line an let you know that surgery was a breeze. The ICU
left something to be desired, but, after I got in my room, it was easy. I was
one of the very lucky ones (1 out of a million) that was found to have a
membrane that was covering my valve thus, when they went in, all they had to
do was clean it off and I got to keep my original valve. (YIPPEE!!!) I still
have this lovely incision down my middle, but, I feel fantastic. Now, my
biggest problem is sleeping. It seems I can't slow down long enough to. Kind
of like a little kid, I'm afraid I'm going to miss something if I doze off.
Best wishes to you and yours,
Ronnie

December 5, 1999

November 9^th has come and gone. And no, we did not go out for dinner. It's funny. We both looked at each other and said, "Nah, let's just stay home tonight. We don't need no stinkin' trendy restaurant to have a good time." Ok, the view of the city at night would be nice, but the drive downtown in Toronto rush hour madness is just not worth it. And who really needs a plate of tall food? Food as art. Been that. Done there. That's just it. Our life is much more simple these days. We've realized, the older we get, the less we have to do the things we don't really want to do. If it is really not important, then who cares what people think or expect. Life's too short.

As the holiday season is upon us once again, we are thankful for all we have.

"...I'm still climbing up the mountain side

Don't count me out

Long as I got my heart and soul

I got everything.. everything I need"

(Keb' Mo' - C. Streetman)