Part 1: Heart to Heart

Part 1 (7/92 - 11/92) of A Human Heart Story, a five-part book about one man's heart transplant, from initial diagnosis through recovery, by Jim Gleason, reborn on Oct. 19th, 1994. Note: taken from the Gleason Gazette family newsletter with editing for general readership.

Background

I guess the biggest event in recent months was the heart incident for Jim back early July of 1992. The details are found in the "too long" article "Heart to Heart." As of this writing (in fact this afternoon - 11/10/92), a recent series of tests to see how the heart muscle is recovering do not show any improvement. While there have been no symptoms since that hospital stay (very good news), the left ventricle is still operating at less than 50% and we go to talk this over with a cardiologist next Monday. While this amazing gift of a body that God has given us can do just fine on a single engine, the doctors warn that this leaves no reserve in case anything else should go wrong (like a big 2-engine jet I guess...), hence the concern and visit. Thanks for all your prayers and concern (and to my nephew, John Scott, I owe you an apology for jumping over that pail at the hotel to prove how good I was feeling the day after getting out of the hospital at Bill's bachelor party - I didn't take into account how very concerned you were, just how great I was feeling to be out of that hospital in one piece...). More news to follow (obviously...), meanwhile, keep up those prayers, please.

The Story Begins

(compiled from pieces written during my July, 1992 hospitalization for cardiomyopathy)

(Ed. note: before we begin, let me give you the latest update on this story...

Last Monday, Nov. 16th, I went to see the cardiologist for a reading of the recent series of test results showing the current state of this heart of mine. I am happy to report that he is satisfied that the medication is doing its job and my heart is not causing any more symptoms. The tests still shows a weak left ventricle muscle and the heart is working at under 50% of its capacity, but that seems to be sufficient for this body of mine - isn't that a miracle that God gave us such reserve capacity. The doctor plans to redo these tests in a year to see how the body is repairing that muscle by then. As he said: "The other alternative is a heart transplant, but you're not a candidate for that. You're doing too well" Thanks doc. Thanks, God! Now lets go back to the beginning of this story several months ago...)

"Thank you, thank you, thank you!"

... to everyone for their support and concern during my recent hospital experience. You really have to be there to fully appreciate just how much it means to have everyone "rooting for ya" as you go through some very strange and new experiences associated with your very own heart. But I get ahead of myself, so let's just back up a little bit to put this all in proper perspective.

It's Wednesday, July 8th, 1:30 (1992) in the afternoon, and my daughter Mary has just dropped off my laptop computer ("Thanks, Mary!") to the hospital room so this story may be recorded for the Gleason Gazette (our family newsletter). The modern computer-based heart monitor just above my head sounds out the beat, beat, beat of my heart - sort of a regular rhythm, except for when the pattern is broken - a regular occurrence in this case which is the reason for my being here in the first place. The same monitor sounds an alarm every time an irregular pattern involving something called a VPB (a spike in the graph of the heart activity) occurs - OOP's, "Bong...bong" - there goes one now: "** PAIR VPBs" is shown in a special alarm box on the screen - you look up and wonder, is it something I just typed? This has happened enough times that you really don't make more than a casual note of it. Nobody from the nurses' station here in the SCU (Special Care Unit) comes running (ala the movies...). So we continue typing - OOP's, "Bong...bong", "**VPBs more than 11/min" - that's a lot of peaks on the graph - interesting. Onward...

How did we get here?

So how did we wind up here in the SCU (i.e.,intensive care unit) of Phoenixville Hospital? First let me explain that the choice of a bed was dictated, not by the need for such critical care, but rather by the lack of beds on the normal floor with the required heart monitor, so it's not as bad as it first sounds. Poor lifetime friend, Ray, called to offer his regards only to be asked: "Are you family?" - to which he immediately thought: "This is not a good sign!" - at which point they told him I was in intensive care and only immediate family visits were allowed. Now let me assure you that that comes as a BIG shock to close friends. Ray called back my brother-in-law, Bill, to report the news - and indeed it was news to the Kolacy clan where my sister Betsy (a nurse) promptly guessed the real reason for the patient placement (i.e., there were no beds with monitors available on the normal floor, only here in SCU), shortly confirmed with a call to yet another call to my wife, Jay. All returned to a normal level of concern again.

Several episodes of shortness of breath - or better yet, rapid, labored breathing accompanied by a feeling of a chest closing in (not pain in the chest) with immediate anxiety were the basis for the original alarm. Despite my aversion for doctor's care, my mom didn't have no dumb kids, so I immediately underwent Dr. Real's scrutiny (how about that, a "real" doctor - ha, ha!) and had several tests scheduled to see what the heart was doing to cause these symptoms. Suddenly terms like ECH0 cardiogram, RMST (Radioactive Medicine Specialist Technician - Andy to his patient friends like me), MUGA Scan, Cardiac Catheterization, PVB's (Premature Ventricular Beats), and the like, become part of your vocabulary - along with all the associated gory details that are involved with their administration. After a stress test - radioactive injection while working out on a treadmill followed by a space-age XRAY series taken by Andy (the RMST) - and chest X-rays, it was determined that my heart was enlarged. More specifically, the left ventricle or pumping chamber of my heart was enlarged and appeared to be pumping weakly - a situation that the cardiologist treated with grave concern. After moving up the scheduled ECHO cardiogram to NOW after an episode Sunday evening involving a trip to the emergency ward, the results caused an immediate invitation to enter the hospital for 3 (or 4) days of testing. I certainly wasn't going to argue with that, so a couple of hours later, here I was, feeling fine, marching up to a hospital floor with lots of "sick people" all around. When it involves the heart, nobody takes any chances, so you get very close attention - something that takes some adjusting to when you are feeling OK.

Great support...

The staff at the hospital were "SUPER" in every regard. They never failed to introduce themselves and explain in fullest detail everything they were about to do. First there was Tish (I have never met a more thorough inquisitor upon admission - I think she must be trying to become a doctor and is trying to figure out the answer before all the tests give the clearer picture to the doctors); then Betsy (a dead ringer for aunt Michelle in both looks and caring personality); Lynn (who's loving glances across my bed to the attending technician gave her away as the wife of Andy (the RMST); Mary, from the Cardiac Catheterization lab, her partner in that procedure, Mimi; Judy (who explained all the details about the neat computerized monitor I got to play with in my room - "Thanks, Judy, for making the printouts of my heart tracking for this Gleason Gazette article!"; then Connie, Mary Grace (who changed the calendar on the wall each morning - very important event when you start to loose track of time and day), Susan (who took the cardiogram every morning), Rosemary (who personally delivered Betsy's phone message: "Please give Jay (my wife) a big hug for us..." by giving Jay a very surprising real loving HUG! - what a beautiful touch Rosemary, "Thanks!") - and I can't possibly remember who all else - each taking blood pressure, listening for your heart, checking temperature (with a gizmo into the ear that registers in under 2 seconds! - sure beats the alternatives experienced in the past - I'll "take it in the ear!" anytime), checking pulse in the feet, etc. Doctors Real, Rogers, and Weber came and went. Technicians like Andy and Mary came and explained the upcoming procedures. A video was rolled in to go through all the graphic detail of the cardiac catheterization (oops, "Bong...bong" - now we have **MULTIFORM VPBs, and then **VPBS> 11/MIN! right on top of that - I'd better type faster to be sure and get this story out before whatever comes next on that monitor...). Seems they are going to cut into an artery in my right leg, insert a catheter up to the heart and "look around" - something that "will cause no pain" and I can watch on the overhead TV screen as the dye makes the heart vessels and beating visible - wow, neat! From that they will be able to tell just what damage has been done - presumably from a virus I had during the previous month.

Options...

Seems my options are...

a) heart muscle heals itself (with some medicine to help, of course) in six months or so, or

b) the heart gets worse and patient becomes a transplant candidate, or

c) the heart requires medicine for the rest of its lifetime to fulfill its function.

I told the doctor that I choose option "a)" - so we will see what the test brings out tomorrow morning (details to follow in this story, but at this point that's still in the future). It sure seems easy on the video the nurse just rolled out of my room. Flowers ("Thanks Wanda, Adam and Katie!") brighten up my sun filled room, with plastic balloons showing a Koala bear (Band-Aids all over) picture saying: "AW, WHERE DOES IT HURT?" - all hand delivered by the Kolacy/ Grandma delegation yesterday. Bill agrees that if he every goes to a hospital, he wants it to be one like this one - quite a compliment to Phoenixville hospital from someone who definitely does not want to go into any hospital, ever! The nurse delivers a get-well phone message from the "sandwich crew" at K&S (my nephew's business) "Thanks guys!" ("Bong...bong... glance up to read the monitor's alarm, go on typing. . .). Each and every friend shares their own experiences (or that of family and friends) to reassure you that all will be well - "Much appreciated!" Well, for now I'm going to take a short nap, listening to my Walkman and its taped music, and continue reading several books I've been trying to finish reading for years now. Meals are "NO SALT" and flavorless - something everyone is telling me to get used to! Weight is down 9 pounds in the 2 days I've been in here - mostly as a result of some pills that reduce your body's fluids. Blood pressure is excellent (110 over 70), and so forth. I'll continue this with more details tomorrow after the next test. Bye for now.

("Bong...bong: **VENT TRIGEMINY" - now that's a new one on the monitor - I'll have to ask Betsy the nurse what that means, huh?)

Ten P.M., same day - new nurse on duty: Diane just completed a welcome back-rub! She reviews again the details for the morning - no food or drink from midnight, only one pill, IV to be inserted at 7:30. Ray & Joyce (his wife and nurse) have called with warnings of what to expect of the morning's procedure so I wouldn't be scared when the heat spreads over the whole body upon insertion of the dye (her mother described it as "very hot," and "afraid of dying" while the hospital's video talks of "a spreading warmth for 30 seconds to a minute").

Tomorrow morning I will have my own report to share on the experience - we'll see. Pressure taken: 112 over 72 - same as earlier. Temperature now a fever (nurse says...) at 99.6 degrees. Nothing much on TV all night - PC magazines read along with more chapters in those books - time passes slowly with the tick, tick, tick of the heart-beat monitor constantly in the back-ground, along with an occasional: "Bong...bong" with its associated alarm message to remind you of why you're here in the first place. Phone calls to grandmom, Betsy and others done earlier - gifts of PA lottery tickets checked against the 7pm on-screen lottery drawing for $13M (no winners in this family!) - and assurances given to all that I'm not nervous about tomorrow, it's time for a good night's sleep - story to be continued Thursday. "Good night, and thanks for all your prayers!"

Thursday morning: preparations begin at 6 a.m., no food or drink til after the procedure (not to worry, they're holding my breakfast until I return at 8:30...), nurse to shave groin area (ooohh!), IV's inserted, medications administered, 8 a.m. scheduled start time for the actual work in the operation room - but that is "hospital time" according to Jay, and she turns out to be right as delay follows delay and the wheelchair ride to a very cold operating room finally takes place closer to noon time (so much for that late breakfast!).

The Biopsy

Everything there follows the script of the video tape seen yesterday. No apprehension (Vallium probably helped that), but lots of interesting monitors and procedures while nurses Mary and Mimi do everything to make you feel comfortable with ongoing explanations for each step along the way. Dr. Weber does the actual cut into the artery and insertion of the catheter without pain. The IV show of your very own heart with the catheter searching around for the heart's chambers, valves, and arteries/ veins is fascinating! (Yes, you are awake for everything...) Dye is released and the coronary blood vessels stand out against the pumping heart muscles. The anticipated heat sensation is very mild, with the feeling passing from the chest area through the face even down to the lips and down each arm to the fingertips - all in about 5 seconds - and then that passes. That's all there is to it!!

After applying pressure to the groin artery to form a clot (there's 2 tiny holes each about the size of a pen point - one for the artery and another for the vein insertion points), you're taken back to your room for the real ordeal: laying with the leg immobilized, the arm fixed into position by the IV, the other arm locked by an automatic blood pressure cup that activates every 15 minutes (112/64 - very good!), and a head that can't be raised - all to be held that way for at least 6 hours - that's the real pain of the whole ordeal. I really can't convey the feeling of having pretty nurses come by every 15 minutes, picking up the cover over one's groin (and everything else that's down there...), and proclaiming "Very nice!" - does a lot for the male ego! Of course they are referring to the wound healing, which, after a bleeding episode, is now covered by a "sand bag" (clear plastic bag filled with high tech real sand, of all things) to keep pressure on the wound. Many long hours later (or so it seems - actually 8 p.m.) one by one, the limbs are freed and the patient is finally allowed to sit up - wow! does that feel good.

A very brief (i.e., 60 seconds) visit by the cardiologist, Dr. Rogers, delivers the results: arteries and veins are clear (yeah!), heart valves are fine (double yeah!!), and the only problem is the original enlarged pumping valve with its weak muscle. He'll be by tomorrow to discuss the next step - i.e., seeing if the heart will repair itself over coming months. Calls go out to family and friends to pass on the good news and sighs of relief are heard over the long distance phone lines. "Thanks for the support and prayers!" Gee: noticed there have been no Bongs from the overhead monitor for most of the evening as I sit here writing this - another good sign! Well, time for bed as I lay back and listen to tapes from Bill, Ray, and Ray's son, Guy. Boy, its great to have such friends! "Thanks for being here with me, guys!" More story to follow tomorrow when the doctor has promised to get me "up and around" and he says "we'll see about going home in a day or two..." - just wait a minute, I've got Ray's picnic Saturday, and Jake's bachelor party that same night. A selling job needs to be done here...

(to be continued tomorrow...)

Friday 6am: Judy stops by for the morning ritual of temperature and blood pressure checks (112/72 - still very good - due to the effects of the meds?), etc. We have a long, in-depth discussion of the fairly new computerization of the monitors here in the SCU - fascinating, what they can (and can't) do. Obviously Judy has been an attentive student in the nurses' training programs and freely shares her knowledge with me. After we go over all its many functions, I ask her for some printouts and explain the interest you GG readers will have while reading this article. "Sure, she says..." and immediately delivers two printouts - one showing a false alarm and the other showing patterns of VPB's of real concern. Well, feeling very good (except for a sore back from all this laying), I wonder if the doctor will agree with me in being released today? He might want to start the meds to treat the weak left ventricle and feel the need to closely monitor their results here with these magic monitors. We'll see. Also can't wait to see if my home scale reflects the same weight loss I saw on the scale here - a total of 17bs since late May (sure, a lot of that is the fluids squeezed out by the meds - and I do mean a lot of fluids! - but it sure is encouraging - if not cheating?). Well, see you after breakfast and the doctor's visit.

Friday 7:51am: Dr. Real just stopped by to review the findings from the catheterization and seems very pleased with everything. Hopes to be able to treat the viral induced weakness of that heart muscle with medicine to full recovery. After a formal review with Dr. Rogers (the cardiologist) later, he promises to be back and hopes to release me TODAY! ("Yeah!") - we'll wait and see...

8:30am: Well, that release today was not to be. Dr. Real and Dr. Rogers want to see a day's activities on the heart monitor with my walking the hospital halls before a possible release tomorrow. Seems the irregularity of the heart beat needs to be studied under stress before they can know just how serious that condition may be. Oh well, here come some more pills - now back to my friends' taped letters (makes me feel very fortunate - there's a lot of lonely looking patients waiting for nothing there)...

10:00am: Transferred down to the 2nd floor - a telemetry unit where they can hook me up to a transmitter (about the size of a pack of cards) with leads to the contact points on my chest. The heart's activities are transmitted to the central nurses' station where I join 7 other heart monitor graphs, side by side, for them to keep an eye on it. As I walk the halls you pass this monitoring unit and can't help but watch your own graph, a graph that reflects everything you do (i.e., just scratching your head immediately sends the graph crazy! Mike wanted to know if I could write my name in the graph yet?), as you do it! After several trips around this small hall, you start to watch the other patients' heart plots. They all seem so similar to each other, so regular, so perfect then there's yours: quite a different pattern, an extra blip every other pass, an extra dip here and there - "I wonder why?" you think to yourself. Stopping a busy nurse, you are offered the explanation that the others are all laying down flat in bed, while you are walking the halls and doing things. Good, I like that thought. The nurses continue to be so supportive and considerate. They really are Phoenixville Hospital's greatest asset and best medicine.

Friday: long day - lots of walking - meeting other patients (like Florence, 92 years of age - "I'll be 93 this fall!" - full of vigor bewildered why she was quickly transferred from an outpatient visit to a fully admitted patient - a mini-stroke she learns later that day - with each pass of her room on my walks I "collect" another beautiful smile from her with our exchanges). Then there's Don, my roommate. About 70, he has been smoking for 50 years. Now he's paying the price. He's in because his body couldn't breathe (again). Thought he "had bought the farm," he says, in describing the latest episode. Very sad to see this energetic and vibrant business owner brought to his knees - forced to fight to sit up and do oxygen inhalation therapy to try and open up the damaged lungs - to fight for the very air needed to speak of his fascinating life as I listen to his WWII stories. Everyone out there: "Please don't wait for this to happen to finally get you to stop smoking, like Don here!" Not sure? Stop by and visit the Dons of this world. You can't help but look at him and picture yourself in his place years from now. He finally stopped smoking last December. Studies show that smoking takes about 7 years off your life span. I'm so proud of all of you who have given up that habit. "Congratulations!"

My daughter, Mary, faithfully comes by to pick up my spirits and to see if there is anything she can do for me - as she has each and every day ("Thanks, Mary!"). Son, Mike, and his girlfriend, Kim, stop by as a summer thunderstorm hits the area. "Oh my, we left the windows cracked open!" remembers Kim excitedly. Too late now, as the heavens break open and the floodgates burst. Mike will later confirm that his side got drenched and he sat in a puddle of water all the way home. Oh well, at least Kim's car is much cleaner now. Doctor Rogers passes by the door with a greeting: "Looks like you'll be going home in the morning. See you then!" I've been watching him go over the patient's charts at the nurses station for the past half hour as I walked by, wondering if those charts were mine and what he was seeing from my walking heart monitor records. I guess they are OK, huh? Time to try to get some sleep and see what tomorrow brings. Pretty young nurse offers a welcome back-rub to start the process... "Great!"

Saturday morning: rise early to shave (can't wait to get home and take a SHOWER! These heart monitor leads pasted to the chest have limited my washing all week) - "Mr. Gleason? are you brushing your teeth in there?" A reassuring: "Yes..." lets the nurse go back and explain the erratic heart monitor activity seen at the central station. Good to know they are watching so closely. After a small (low sodium) breakfast (very small), I await the appearance of the cardiologist, Dr. Rogers. To my surprise, Don's doctor comes in and releases him to go home - after assurances that they have an oxygen tank for him there! Really wish everyone could have this antismoking experience - it's very effective! Finally Dr. Rogers stops by to say all looks good and I can leave now. Must stop by and pick up a portable monitor Thursday, wear it all day, then the hospital will analyze the heart's 24 hours activity to see how recovery is doing. "What about the erratic heart beats?" I ask. All part of the virus attacking the heart muscle. Hopefully, with a little helpful medicine (3-RX's the nurse leaves with me), the body will heal itself and all will return to normal in a couple of months. Tests are scheduled to validate that process. A miracle, this body that God has given us! And with all this machinery we try to keep up with it and see what's going on - amazing!

Going Home

I call Jay and dress in a flash. Within minutes, there's Jay and chauffeur-son, Mike - what a welcome sight. "Do you need a wheelchair?" the nurse asks. "No thanks." And away we go into the hot summer daylight - the beautiful hot summer daylight - it feels great!

Home! A sandwich! A shower!! What a reminder of the gifts of life. Reflecting back on all this is interesting. Certainly the original episodes of hard breathing and heavy chest were scary, but the whole hospital experience was anything else but scary. It feels so good to KNOW what is going on inside. Those tests were explained so supportively and conducted so professionally that that part was a very positive experience. Certainly attitude is a key factor, but family and friends providing such loving support and prayers were even more so. You come out the other end of this with an even finer appreciation of God's gift of life and the simple things of life - like just taking a breath of air! It's really tough knowing that everyone out there is so worried for you. All the words of assurance you offer them are just not the same - its so much easier to actually be there and know for yourself that you feel the way you do (i.e., "Good!"). While I wouldn't wish this on anyone, if you do have to go through it, may you have the experience I did - a caring hospital and staff to guide you, family and friends to support and pray for you, and a positive outcome to the whole process (i.e., time and meds will let God's miracle body healing do its thing!).

The End and Thank you...

Like I said in the beginning of this (too long...) story:

"Thanks! Thanks, thanks, thank you..."