23. So Long, Perry Como - Hello Stumpy

July 2, 1999

It is a perfect summer evening and I'm sitting out on the veranda watching the sprinkler go back and forth. The big dog is crashed out under my chair as peaceful as can be. As the sun slowly sets, the sound of the tree frogs squeaking, the birds still singing and the water drops hitting the leaves and the patio stones is like a strangely comforting symphony.

It is a peaceful time of day here in Niagara-on-the-Lake. The hordes of tourists that have come to town for the long weekend (Canada Day and July the 4^th) are either finishing up their late dinners at a local restaurant, or they're at one of the Shaw Festival's three performances, or perhaps they're back at the B & B all tuckered out from a day of sightseeing, shopping and winery tours. Winery tours usually include wine sampling, which can certainly tucker me out.

I have recently read the last chapter in The Bum Ticker and realized that I left off on such a downer. I think an update is long overdue.

It is now almost eight months since my heart surgery and it really seems like it was all just a dream. I read this journal over and I am so glad that I wrote it for many reasons.

• �There are so many memories in it, good and bad, which I would otherwise be prone to forget;
• �I need to be reminded of all the good will that was sent my way by friends, family and total strangers;
• �I am still receiving kind and thoughtful e-mails from people that are about to undergo heart surgery and have found comfort and strength through this journal.

It's been such a good thing.

From Deb Swallow

Tuesday, April 20, 1999

Dear Steve,
It's late; and I'm wide awake wondering why I take comfort in reading and sending messages to other heart patients seem to get a bit blue at night, even though for me everything is 'hunky dory' (pardon me, i hope that Dory is feeling hunky too!!)i don't know you, except for your writing, but I'm sending you my strong heart felt wishes that you are recovering from Perry Comoditis (!).For anyone who has undergone open heart surgery, there is underlying worry...and I think after initial euphoria, a low and vulnerable period ;Getting through this period will lead you to a state where (if my experience is anything to go by,)the wonderful ordinariness of one's life reasserts itself.1 year post -op I felt fine, now 1 and a half years post-op I am feeling really myself. I am sending my love to you across the ocean; and to your family and friends with a belief in the tenacity of our bodies and our spirits, and a gratitude towards the technicians who enable them. big love from --
Deb Swallow

From Deb - Part 2

Dear Steve,< Thanks for your instant communication.....I'm irrationally but understandably pleased that you have gotten over Perry Como. I am so glad that neither of us had to deal with Frank Sinatra or ( god bless her and with equal respect) Dusty Springfield!

Big Love
--
Deb Swallow

From Dale K. Jones

Thursday, April 08, 1999

Hi Steve. It's late and I am sitting at the computer, unable to sleep after
getting home from work an hour ago. It's taken me this long to read your latest Bum Ticker update with affection and patience. It made me cry.
What was most astounding is the communications you have received from others who are going through similar experiences. You must be commended, for indeed if your goal was initially to share your experience with others in an effort to find refuge in your ordeal, you have touched upon a cache of others like yourself in desperate need to share and be consoled by your example.
I will think positive thoughts for your recovery. Hope Dory is feeling better soon too. And once the family gets back on an even keel, your dog will be OK as well, and you can sell the (blood splattered) draperies to the Art Gallery of Ontario.
Love Dale

From John Lamond

Thursday, April 08, 1999

Hi Steve,

I'm doing well and still operating on all cylinders, the bores a bit worn and doesn't develop full power anymore but at least it still chugging on. As they say every day above ground is a bonus.

Having just read the latest addition to the Bum Ticker Pages I was sorry to hear you have pericarditis.

I will check in from time to time to see how you are progressing, but am sure you will bounce back again.

I hope Dory has recovered from the flu. We have a very nasty strain called the 'Sydney A' heading this way I believe it originated in Asia and was identified in Sydney Australia. I have just had most of our staff inoculated today, (as we are heading into winter) those that wanted it, to provide protection. With my luck we will probably all catch the Flu in about ten days - incubation period - and end up off work together and those who didn't opt for the inoculation will probably not get it. Murphy's Law again.

Please leave me on your list. I see you have found the Coronary-Artery-Surgery message board. Last year we got lambasted by the Chelation Therapy advocates. They seem quieter this year. There is another site I cannot recall your signature there . It is www.my.webmd.com where you can join the message board

All the best and keep in touch.

John-L

We had to have about six inches amputated off the tip of her tail. That was over two months ago now and it still has not healed. She's not chewing it anymore, but licks it from time to time. The wound is taking a very long time to heal and some days we're just not quite sure what to do anymore. But I am more optimistic and think that in time, when the hair finally all grows back, it will heal.

(Photo: "We decided to get rid of cable and get a dish! note the stumpy tail)

It doesn't seem to bother her at all and hasn't slowed her down one bit. And she's not even mad at us for doing it to her and then having the nerve to call her "Stumpy". She hasn't lost her sense of humour and continues to provide many a laugh. Bailey the beagle of course is oblivious to it all and just carries on in her own lazy, lovable beagle manner.

It really has been a difficult year but things are looking up. Dory's flu from hell is long gone. I've been very busy lately at the office and when I'm at work I throw myself right into it.

Music has been very active for me and a few months ago we started converting the back shed into a recording studio. It has been a total reconstruction and as always, a ton more work that I ever intended. But it is also much prettier and better than I had originally planned. I am now probably three or four weeks away from completion. I can wait to set up all the gear, fire up the espresso machine and hit that red "record" button.

From: Audrey Svensson,

Tuesday, April 06, 1999 9:43 AM

Hi Steve,
I'm glad you've e-mailed us. David finally got home from Cleveland on 3-27-99, just a little over a week ago, after spending almost 3 weeks there. He ended up having to have a 2nd surgery about a week and a half after his heart surgery for what they called old blood from the surgery around his heart. They drained 1 quart of blood from the sac around his heart and another >700 of fluid from his chest cavity. He had a drain tube for 3 days. They finally discharged him home to Michigan with several sutures from the drain. He just had these removed yesterday by his local cardiologist. He also had an echo and a chest xray, which all were very positive.
I don't remember if I was able to e-mail you after his initial surgery, but they repaired this aneurysms with a dacron graft, and Dr. Lytle was able to keep David's own aortic valve. After repairing the aneurysms, the valve & leaflets kinda went back to their own "shape" and Dr. Lytle was able to make a couple of minor "adjustments" to them, so David did not have to have the steel (or whatever it's made of) valve. It goes without saying that we were all extremely excited about this.
David's had some ups & downs (temps, vomiting, etc.), but all in all he's done great. He is getting his appetite back (he lost about 25 pounds during this whole thing!), he's feeling less and less tired, and he's walking over an hour a day. Pretty good for someone who had a minor setback with that second surgery and all, I think.
Thanks for remembering us. Hope you and your family had a good Easter. Keep in touch.
Audrey & David

From Anonymous

Wednesday, April 07, 1999 11:20 AM

Hi Steve - I've read some of your story. I'm 33 and had an asc. aorta aneurysm and aortic regurg. diagnosed April 98. I live near Detroit with my wife and 2 young kids, although I'm from Stevensville in your neck of the woods. My mother now lives in NOTL on Oak Drive. Dr. David was able to repair my valve and re-suspend it inside the Dacron tube (9-9-98). My recovery went very well. I was out of the Hospital in 5 days, running 2 miles at 8 weeks, and playing hockey at 12 weeks.
I was told that I had a "rub" (pericarditis) right after surgery and was put on the high doses of aspirin from the get-go for about a week and then a lower dose (equivalent of 4 aspirins per day) for another 3 weeks. I was told that the younger you are the more likely this will happen - by the sounds of your experience I'm glad mine "swelled up" right away as I had no discomfort that I noticed other than the surgery. I was wondering why you did not choose a homograft? That was my choice if my valve could not be repaired.
I'm currently trying to find out what caused my aneurysm - I was evaluate for the Marfan Syndrome but did not have enough of the characteristic for that. I had some blood sent down to Houston to be evaluated for a genetic defect. The reason I'm looking into this is two-fold: 1. I am likely at risk for other aneurysms (aortic or cerebral) - Dr. David put me on a beta-blocker to reduce the chances of another one forming, also hernias.
2. More importantly, this defect (similar to Marfan's) is dominant and each of my children have a 50-50 shot at having this as well.

From Audrey

Wednesday, April 07, 1999 10:19 PM

Port Townsend Wa. My recovery took place in the rain. 84 days of it. This was okay cause my recovery was not comfortable at all. The operation and hospital stay were fine. Home was not so good. I retained allot of fluids in my chest cavity so I constantly out of breath This was the very symptom I was curing with the replacement. I sat in every chair in the house and again as fate would have it my new computer chair became my savior. I spent much of my days from computer chair to recliner. Walking was out of the question. Six weeks after the operation things turned around.. I'm in cardiac rehab now and almost full time at work. The bad times somewhat blurred and looking forward once again. I still re-read your journal and all your e-mail. Cardiac support groups are so important and they are hard to find before surgery-- so thank you again for being you and I wish you good health.
Audrey

From Neil Holmes

Saturday, April 10, 1999

Steve, I ran across your site while surfing the net here at work and thought you had a pretty good idea putting your story on the net. My wife is a charter member of the zipper club since 1991. Just some quick info here, her heart problems started in 1985 when her heart raced @ 300 beats per minute for 4 days, did some pretty bad damage. She had the mitral valve cleaned out, in 1991. I bug her that they just ran a pipe cleaner thru it. When she went for the angiogram they forgot to sedate her in any way and she just about jumped off the table when they introduced the dye. She felt a better after the valve was repaired, however now her heart is all buggered up again. You were saying you were on the treadmill awhile back for 20 minutes, on Marilyn's Thursday's visit to the doctor she made it 45 seconds walking before collapsing. They had put a pacemaker in her in Nov 98 at the University Hospital in Alberta but the lead in her heart moved so they couldn't do the ablation, and still is not done 5 months later. She was in hospital for 12 days for this job, 5 days laying about before doing anything. Talk about a waste of health care dollars, having someone in hospital for this long not doing anything, just waiting to go down 3 floors to the surgeon. Also they didn't put the pacemaker in deep enough so it will have to be cut out and redone. She calls the lump the pacemaker makes as her third tit. Anyway it sounds like your health care in Ontario is much faster than out west here. Maybe one day she will be able to walk 20 minutes on a treadmill. Good luck on your recovery.
Homer. (my nickname)

From Erik Anderson

Thursday, May 20, 1999

Steve - -
Long time, no write... But hey, you'll probably understand if I just say, "I've been back at work for two months now." Whew!
I was alarmed to hear about your bouts with periocarditis! Jesus! Hitting you so long after you were back to full fitness and then sticking with you so long. I had a little bout with it about six weeks after my surgery. Just when I thought I'd turned the corner and was feeling alright, I started to fell like I was back to the first week out of surgery. Totally wiped out, feverish, achey (sic?). The medicos monitored it for a few days and then sent me in for an echo to look for endocarditis. Nada. So they assumed it was peirocarditis and told me to ride it out. I did, but it actually started to go away the day I went for the echo. I suffered with it for six days... not the week on week thing you went through. But, by the sound of your last e-mail (to which I am finally replying), you are back to full fitness?!?!?!
I think a bound copy of your journal is a great idea. It was really a find and source of support for me - - both reading the journal and 'talking" directly with you during the lead up to and then living through the surgery. I'd like to share it with people who may be leading up to what we went through. The few times I've mentioned it to my cardiologist and surgeon, they seemed disinterested. I suspect it was because the are not 'Internet kinda guys!' And I suspect, neither are quite a lot of heart patients, as most are not really in our age range - - just that few years older!!! So, what I'd like to do is order two copies of your journal and give one to my cardiologist and one to my surgeon so they can loan them out to likely candidates they are working with. I think quite a lot of people will find it inspiring and supportive. What do you think?
FYI... I'm doing really well now. The surgery is really just a past event for me. I am back to 100% plus health. I feel aerobically fitter. While I wasn't really symptomatic before the surgery, the degradation in my aerobic capacity and the minor tightness in my chest when I did exert myself were things that had slowly crept up on me. Now that the new valve is in place and the blood flow is much greater and freer through the valve, I feel much better during exercise. Plus I don't fall asleep on the sofa at 9:00 pm like in the previous few years. Of course, after four months off work, I am well rested. Let's see what happens after a few more months with my nose to the grindstone!
The last big hurdle was getting back on the golf course after three months break. No problems! After a couple of rounds I was back to playing to my usual, mediocre level!
Hope all's well with you, yours, the dogs and the music. If I'm ever headed to Toronto again, I'll send you a missive and maybe come catch a gig!
Ciao for now... Erik Down Under...

From Thomas Donnelly

Monday, May 24, 1999

Dear Steve,

I really enjoyed reading about your bumticker experience. Your web page was recommended by a classmate of mine whose father recently had a similar procedure. My dad is facing triple bypass on Thursday. He said he will be reading about your experiences during his recovery. I'm sure he'll appreciate your great sense of humor. I just wanted to say thanks for sharing your experiences with us. I raise my Guinness to you friend.

Tom Donnelly

From Angela Baxley

Thursday, May 27, 1999

Hey good news! My husband Darren had his valve replacement a week ago and he is coming home today. He is 39 and healthy like you and would have been home sooner except they had to keep waiting to get his levels of blood thinner up in his system. I was really amazed that he was awake before they brought him back to ICU and setting up in a chair eating Jell-O in three and a half hours after surgery. I guess being young and healthy had a lot to do with this. I wanted to ask you if you have seen any (what to expect after your replacement valve surgery videos for healthy adults)? All the hospital we were at had was videos for older or sicker patients who would need special diets and such. Might be interesting for a lot of people to see what their true expectations might be if they are basically healthy and not already sick huh? Darren is already walking at a fair clip and can't wait to get home...I am going to have a hard time keeping him from doing too much for sure. Thanks again for your story it helped us a lot......Angela Baxley... [email protected]

From Chris Daniels

Tuesday, June 08, 1999

Hi Steve,

I read your book on the weekend . . . WOW . . . I was really blown away! I immediately looked through my list of publishers who accept unsolicited manuscripts but unfortunately, mine are all publishers of children's material. Your journals are so well written. The no nonsense realistic style is very appealing. I found myself going back again and again to read it until the very last entry. We had no idea at all of what you were both going through. There you were, getting supportive email from around the world and your neighbours practically across the street were oblivious to your life threatening trauma. Yipes . . . we feel terrible! We're so glad that you have recovered so well. You look Great! From reading the book, I get a sense that the experience, as terrifying as it was, actually enriched both of your lives in many ways. All of the email you received certainly confirms the concept of making this project available in bookstores. What a source of comfort and hope for anyone else facing such an ordeal. You really should consider submitting it. If you would like some help researching publishers, just give me a shout. Thank you again Steve and Dottie for sharing it with us and lets keep in touch.

Chris Daniels

From Sheran,

Saturday, June 12, 1999

Ignorance is FEAR. My dr said I needed aortic valve replacement surgery and to look it up on the internet if I had questions. Your journaling has been very informative to me and feeling more informed takes away some of my fear. Also, I realize how much more information the dr. should have given me that he didn't take the time to do. I haven't found any sites on the web that have really helped me. I'm feeling very angry with my doctor. Sorry to vent to you and I realize the strength it must have taken for you to have the operation. I will pray for you to regain your former strength and excitement for life. Thanks again for sharing your experiences.

Sheran

From Virginia Ulman

Friday, June 25, 1999

Steve,
My husband, Walt Ullman, just learned about four weeks ago that he had a
"problem" with his heart. He is 54 years old, in great shape and a runner -
3.3 miles every other day. We are still in shock but thanks to your web
site, we understand what is happening a whole lot better. He had gone to
the doctor with a sinus complaint and never dreamed he could have a problem
with his heart but now we know he does: aortic aneurysm, aortic valve
regurgitation and enlarged left ventricle with increased pressure.

I will write more later.

Thanks, Virginia in Seattle

From: Nina Figueroa

Wednesday, June 30, 1999

Steve,

I had just about given up on finding anyone, anywhere who would be so open about life after surgery. I'm due to have my surgery on July 7th. Scared doesn't even begin to touch it. I'm 29 with two kids, one only 10 months, I live my life symptom free (I have a
congenital defect called an atrial septal defect -- I was probably born with it) I can't begin to accept that I'll walk into a hospital feeling terrific and walk out in more pain than I've ever experienced in my whole life.

I've been trying to be brave for my family and friends, pushing all my worries deep down, and I can feel it slowly taking its toll, sucking away at my optimism and filling me up with a sense of dread and doom. I showed my husband your site and he had the
chance to read your experiences. After he read it, for the first time, he looked at me and really understood what I'm going through and what we'll have to go through, thank you for that.

Thank you again for telling your story to a whole bunch of strangers...I'm still scared but I feel so much less alone. I really do hope that there's nothing but good news and excellent health ahead for you.

Wishing you nothing but better days,

Nina Figueroa

Last week I saw Dr. Wolfe (cardiologist) as a follow up to the pericarditis. He was very pleased with me. He said that my chest sounded perfect and the valve sounded "tight". I asked if I had any restrictions, diet, heavy lifting, activity, etc, and his reply was, "You're fixed!" I could do anything within reason. It's not as if I had coronary artery disease. My problem was identified and corrected and I could now lead a normal life with out further worry. In about ten years we will again monitor the valve's performance on a more regular basis.

I mentioned that I am still getting very tired at times. I am exhausted after nine holes of par three golf! He thought that I need to walk or jog more regularly. That would of course build up my stamina and endurance. It would also help me sleep. I am still having a hard time getting into a regular work out or walking routine. I go in spurts. I hate it. But I guess a little is better than nothing. Hey no one's perfect.

From: NINA [email protected]

Saturday, July 03, 1999 9:32 AM

Subject: something unexpected

Morning Steve,

I actually wasn't planning to write you again until after the surgery (knock wood that I'll be alive and well to do so) but my very best friend (who I've known since high school) just came back from Spain yesterday and there I was sitting at the computer when she knocked on the door;
I thought she was just coming downstairs (oh, we live in the same building, me on the 2nd floor, she on the 4th) so say hi and tell me how her trip went, but when I opened the door she grabbed me and she was crying and trembling, her father died of a heart attack the night before she got home.

I've been so focused on my own mortality that I didn't think any one could die. I was very strong for her, I think, but it's hard...we lost a mutual friend to Cancer just last October, a 27 year old mother of two...and Sheila (my best friend) was very close to her, and she didn't get to say goodbye to her, she also didn't get to say goodbye to her father -- that's what's really hurting her now.
I wonder what sort of signs are these? I find myself overjoyed that you and Peter (I did check out his site) have passions you with your music, he and his running...and that you get to wake up every morning and do the things you love with the people that you love. But I wonder do I have what it takes...can I be brave enough?

Well, I'm sorry for rambling to you and I hope I didn't in any way bring you down...
your cyber friend,
Nina

My reply to: Nina

I don't really think these are signs for you in particular, other than just
a reminder of how precious life is and that we are the lucky ones. At least
our heart problems can be treated and once the ordeal is over with we can
return to our normal lives. And hopefully much stronger from the experience
of having gone through it and being forced to take the time to deal with it,
face tough questions and endure physical trauma.

I have always been thankful that my condition was discovered accidentally
in advance because I don't think I could have survived an emergency
aneurism. Also that my luck of the draw was a heart condition and not
cancer or something worse.

So who knows. I think you are strong enough to deal with it . We all are,
in our own special way.

Best of luck and please keep that positive attitude.

From Nina's Family:

This is just a quick message to all of you who have given out your prayers, well-wishes, positive thoughts/vibes/waves and energy....It has paid off.
At approx. 8:22 p.m. July 7th, Nina came out of a successful surgery and was placed in I.C.U.,she has since been moved to her recovery room where she's preparing to make her comeback. Thank you all for your friendship and love. With it I know she'll have a strong and fast recovery!
Thank you all again,
Keith, Aren and Evan

(a small note for Steve: Thank you so much for your web page and your correspondence, It has given Nina the extra strength and will to go on with this and has planted the idea she could actually make it through it...she was a little unsure to say the least!)

From Christian

July 9/99

Thanks, loved your story and drew strength from it. Still get freaked out at times but just going through the motions of making the right decision/preparation for now (e.g. what surgeon, procedure, taking care of finances in case of -yikes- death). You should keep up the writing bit!!! I cracked up several times reading your story (esp. the Oink poem) Best,
Christian

From: Steve W. Rosenbaum

Sent: Thursday, July 08, 1999 7:17 PM

Subject: National Post Article

Goldy !!!

I didn't keep the article but my recollection was that it was one of the headers that they do on the top of each page, small human interest stories. It was quite about two small columns long and the writer wrote that Steve Goldberger is a Toronto businessman who manages a small property management firm. He has a web page where he wrote about the trials and tribulations of having heart surgery. He describes the anxiety of waiting for the operation and the actual operation itself. I think that he said it was well written and quite emotional. It also gives the URL. If you have had a lot of hits within the last month, that may be the reason.

From: Vincent H. Shaw

Saturday, July 17, 1999 11:44 AM

Steve,
Just a note to say thanks for providing me with some encouragement and indications of what I might expect during the next few weeks.
On my sixty first birthday, eight days ago, I underwent a coronary bypass graft x5. My experience in the hospital was remarkably similar to yours. Upon arrival home this past Thursday I felt as if I had been "rode hard and put up wet." Yesterday I did the recommended two five minute walk periods and it has weakened me considerably. This morning it was a major undertaking to shower and shave. It's possible that the effort to exercise in high heat and humidity (North Carolina) is a factor in my weariness.
One of your experiences is vastly different from mine. My breast bone was fractured during surgery as as a result cannot lie on either my right or left side. I must sleep in a slightly raised supine position. Any other position brings major discomfort. My recliner has been the only place I am comfortable. Lying on my back in bed is not an option due to reflux.
Your comments about the pain site moving from the incision site to shoulders and pectoral muscles has set my mind at ease. For a while this morning I thought something might be going wrong.
I also share your concern about narcotics. I have never been ill before and have limited my medication to aspirin and cold remedies. The thought of becoming a drug addict is frightening and I have been trying to "tough it out." I started taking the narcotics again out of desperation for pain relief. I guess I'll have to start working on toning down my self evaluation as an "iron man" and follow the instruction of my care givers.
Again, thanks for the time and effort, to say nothing of the determination during you period of recovery, to build a site in which you share information that has helped this weary patient. God Bless You.
Vince

So there you go. Since I only have one copy left, and now have this new chapter to insert, the hard copy bound version of the Bum Ticker is now going into its third edition. The emails keep coming as people continue to discover the web site. I love it. Whenever I hear from someone, I remember my own fears and uncertainties. It is good to be reminded of this life lesson from time to time. Perhaps an update on the one year anniversary will be forthcoming this November. After all, I've said goodbye before...Thank you all.

to page 24- One more chapter: "Another Visit to the OR" (last one, I promise!)