Eight weeks yesterday (Monday) my journey began...
Journal posted on October 16, 2018
My journal tells the story of a long and dramatic recovery. I guess I would say that my progress has been equally dramatic, celebrated and appreciated these past three weeks. My cardiologist is very happy with my new little 'bovine heart mate', but because there is a bit of pleural effusion, he is going to check on me again in a few weeks. My surgeon, yesterday, after having to spend 'considerable time' reviewing my chart since he last saw me, 'signed me off', and I got the all clear on my cystoscopy today ... ordered because of my bladder issues which have now finally all resolved.
For those still in their early days of their recovery, I hope that my journal postings show that it does get better with time and the photos show a very grateful visual of progress.
A month (today) of escalating, daily and unbelievable drama
Journal posted on September 20, 2018
Did I have some kind of premonition? Let's go back to my Angiogram Journal posting where I made lite of calling my surgeon's office to "bring super strong magnification equipment and to cancel the cow valve and have it replaced by one from a tiny calf". To be honest, I have not read my husband's surgery posting (which, when you continue reading my post,you might understand why), however I did get a very basic summary from my surgeon and husband but not until about 3 days post. op. The basics of the surgery drama are still waffling somewhere still in the twilight zone along with the rest of the several weeks of this this insane drama. Hence my curious question.
The day before surgery, Dave and I attended the required 6 hour pre op orientation. We were met by one of the staff, taken to my pre-op room where I would also go to the next morning at 5:30 am and told that before we could attend the session I was to have a consult with an endocrinologist. What for?? I am told that my blood results showed an increase in insulin levels. Doc comes in and we have a discussion all about the problem of increased insulin levels and valve surgery which led to a 'discussion' about why this had never been mentioned by anyone incl. my GP who carefully had gone over my lab results with me the previous week. Doc leaves and in walks the nurse with apologies...he had been sent to the wrong room. Apparently I had been put into that room at the last minute and the 'other patient's records had not followed her. I looked at the nurse quizzically, still not understanding...."you mean I don't have diabetes??" Nope....again my apologies. At that point all I could feel was relief...within a 15 minute time span I have been given a previously unknown diagnosis of diabetes and then just as quickly, told no I really didn't. That was one of the' happy highlights' of the day...second, was meeting my anesthetist who told me that ' I was a very clear cut AVR' and the third, was my surgeon had asked that I be given 1/2 a sleeping tablet. I didn't have diabetes, I was a clear cut AVR case and I had been given my first sleeping pill....we walked all the way home...I was optimistically pumped.
I briefly/vaguely remember waking for a very short few minutes in ICU later that evening, breathing tube had been removed, achingly exhausted (which would be my daily companion which turned out to be a blessing for what was to come) feeling of pressure in sternum area....but no pain. Moved later the next afternoon after tubes were removed (uneventful), but each step in the week's progress was endured much of the time with my eyes closed...eating, walking my shower, 6 am lab work, calls for the IV specialist team to come when IV's needed attention (electrolytes, potassium and magnesium levels were all over the place). I was totally overcome with a feeling of extreme exhaustion. That was my pain....to keep my unbearably heavy eyes open and to slowly make my jello legs cooperate when the physio came by for my one of three walks of the day. Saturday, Aug. 25th was discharge day.
Tuesday, August 28....Awoke with the feeling that my heart was playing on a set of bongo drums. Went to my GP and he directed us to Emerg....wrote a letter announcing my arrival ...with A-Fib. Admitted very quickly, met by several docs who advised me about the 'shock treatment' I was about to undergo. I awoke to 'I am sorry, we tried the procedure twice with no response. Your potassium/magnesium levels are too low and is what is causing the A-fib. A call for the IV specialist team, a few hours of IV treatment and back home for dinner. Unbeknownst to us, major storm clouds were forming on the horizon. Wednesday eve. I had very unusual dark black diarrhea but we didn't think to much about it as I was on iron pills which can, according to the internet (??) contribute to this color.
Part II Hold on...
Thursday, Aug. 30..... 6 am I called out from my recliner for Dave to call 911....extreme weakness, clammy and there goes my damn heart again. F.D. and Ambulance both arrive after discussion with Dave. Immediately admitted into Emerg., Luckily the F.D. was able to start the required IV before they are allowed to transport to hospital, met by several docs. and a call for immediate blood work after looking at my increasingly lengthy chart. By this time, my arms were in very poor shape...finally a successful draw. Barely awake....until the Doc. leans over and says your hemoglobin has plummeted to 40 since you were last here a couple of days ago and would you accept a blood transfusion...2 bags. They need to do more immediate blood work and can't wait for the transfusion to work its way through my arm veins, so the Doc. brings in an ultrasound and does a deep vein draw in my groin. Remember my gratefulness for being so exhausted...came in handy when I had to stay in Emerg. overnight....bright lights, noise, yelling, the sound of machines. I was back asleep once I got a facecloth to fold over and cover my eyes. Recall thinking this is what it must be like when you are being 'tortured'.
My lab results are all over the place and now they are on the hunt for where or what is the cause of my loss of blood. Off to have a scope done (which I basically slept through :). Found a duodenal ulcer that had some dried blood in the area. Still suspicious but started to treat it with a strong antacid. Perhaps the heparin shots that I had been given when I was in hospital had exacerbated/awakened the ulcer (??) docs. wondered.
Admitted into hospital (lucky as there were 30 other people awaiting a bed that morning), but what was to work against me was it would be on a medical ward....without any of the support that I had on the Cardiac unit.....I was basically back to square one as I even needed help to raise myself to a sitting position....I was just that weak. Of course, I started to have bladder problems again,
Iv's of magnesium, potassium, fluids (wonky Electrolytes, dehydrated), catheter to stay in or just in and outs became the question until David noticed I had become completely disoriented....I was back in 1970, didn't know the name of the hospital I was in....but boy was I cheerful. :) he later would tell me. The thought was I had delirium caused by a severe UTi....but to be cautious I had to go for a head scan just to rule out that the missing valve piece had not made it to my brain. Scan was clear and culture showed a UTi. More lab work required but my arms were in very poor shape according to the lab so a specialist was called in to do a deep vein ultrasound in order that he could put a PICC line in. At least I was getting strong enough to lift myself up into a sitting position, and a walker was finally found as I was still too weak and legs wobbly so that I could once again start walking. (when I was discharged initially, I was totally independent I had regressed significantly....but no assistance as to how to restart any kind of cardiac program. This was a teaching ward and the only program anyone seemed interested in was a game of 'whack-a-mole'...treat the issue that had popped up and then on to the next patient. Bladder still a problem...some of my nurses had quietly expressed that the catheter had been left in too long at this admission and my bladder had become lazy. Even with the decision about the procedure (they had already tried a couple of times to leave it for at least a couple days, it just became too painful so once again in/outs were started. Just a couple of days before I was discharged once again, my ward Doc. came in during the late afternoon and said I was much better now but they would empty at shorter intervals. Then I was awoken in the middle of the night by the res. doc. and told that he didn't agree because of further ongoing chance for infection, and I was to have a catheter put in until later in the day....that didn't last...too painful and irritated.
A new diagnosis....I was allergic to Heparin which had apparently started a GI bleed.
September 11th....it was decided that I would be discharged that day...my only issue being a lazy bladder and that would eventually correct itself. I was to learn to self-catheterize??? What?? This on top of everything else. They showed me once, and I was sent home with two self cath. kits and we would have to pick up my own supplies at the pharmacy. A total mess...only the hospital carried these kind of kits,....medical supply stores only carry supplies that are separate. I had no idea what to do. Finally I went to my GP who was furious after hearing my story, catheterized me and made an urgent call to home care. Spent the next couple of days learning all there is to know about the differences between male/female catheters, positions......
Just getting the hang of it without causing my heart to go into another episode of A-fib and my daughter had to take me into Emerg. on Fri., Sept. 14 where we sat for 6 hours, and told that not only had I developed another infection but because there was blood in the urine, they would have to flush out my bladder to stop any further irritation/bleeding.
Home just before midnight where Dave was waiting for us with supper which I needed before I could take the new antibiotic.
When I had my appt. on Monday of this week with the urologist, he could tell from my recordings that my bladder was starting to respond to the necessary signals. While I am waiting for the next shoe drop, I seem to be voiding enough on my own to stop the Sc's.....something to truly be grateful for....and on my 1 month anniversary.
Our son sent a wonderful message....."Who knew that OHS would end up to be all about bits...they have had a lot more attention than your heart".
My last discharge was Sept. 11 which makes it now the longest period of time that I have been out of hospital. I have taken great care to really protect my mental health....almost like wrapping it in a protective cocoon, enjoying long periods of just sitting and enjoying the calmness and quiet. Aware and trying to be watchful but so far all I have noticed is a bit of paranoia every time I need to go to the bathroom....will I be able to void....so I am now taking my ipad in with me and just reading while trying to let nature take over...and the brain....and some cognitive forgetfulness which might be partially caused by other contributing factors which I have undergone over these past weeks. In fact this has been the first day I have even opened my journal which has proved to be a great distraction.
Diane made me well aware that I should write as soon as her surgery was over, but alas my apologies for not doing so, as you will soon understand.
Diane's surgery was suppose to last 3 hours, given how "healthy" she has been leading up to it, and how "simple" her procedure was suppose to be. Surprise!!!
Diane ended up being in surgery for 6 hours. During an aortic valve replacement, the surgeon stitches about 15 pledgets to connect the new valve to the wall of the aortic chamber. This is normal and these pledgets are made of a tiny rectangular material that prevents tearing and ripping. Tissue eventually grows around these things and they dissolve in time, I believe. They look like tiny links in a necklace chain with holes on the end for the sutures to fit through and be attached to both the valve and chamber wall. All of you have probably heard of these things?
Anyway, while her Canadian renowned surgeon was attaching the new valve using the pledgets, he saw one of them fall into the aortic chamber. Oops! This created an immediate crisis as they tried to find it and suction it out before it got into the main artery going into her brain, as if the pledget lodged there, it would have caused a stroke. They spent the next 3 hours dismantling all her lines, cut open the other chambers to suction the blood out from there and then dismantled all the equipment and filters in an attempt to find this pledget. They could not find it and did not know if they had acted quickly enough so that it had been suctioned out, or if it had made its way to either her brain or somewhere else in her body. They could not tell anything until Diane woke up (as all her numbers remained fine post surgery), when at that stage they could do neurological testing to see if her cognition was impaired or if she could follow commands and also move fingers, toes, head and so on. If she had tingling in her fingers or toes or elsewhere this would signal the pledget had lodged somewhere else in her body. So, all in all, it was a waiting game until later on last evening when she woke up.
As of today, her numbers and readings have consistently remained stable. She has been increasingly alert, cognition is returning, she has no tingling sensations and the medical team looking after her are all very happy. They were confident from the outset that the pledget had been suctioned out, but this confidence has seemingly been confirmed over the last 24 hours. She has improved so quickly that she has been moved from the Cardiac Intensive Unit to the general cardiac unit where her recovery will continue, but she no longer requires 24 hour monitoring. This was the first time this surgeon has ever had this happen to him and he was a bit traumatized by it when I spoke to him. A learning opportunity, even for the best of the specialists and Diane and I both know this will be the case for Dr. P.!
Diane remains calm and cool about everything and we look forward to our more detailed chat with the surgeon before Diane's discharge, later on this week if all continues to go well, as I am sure it will.
Your support, concern, well wishes and knowledge sharing have been invaluable to Diane and you have all become her friends through her preparation for her journey and the adventure that has unfolded for her. So, many thanks to you all for so openly sharing your own anxieties and suggested ways of preparing and overcoming difficulties. Diane has learned much from each of you that is carrying her forward on the wave she is riding. I know once she gets off her surfboard and is back on dry land, she will want to update you further - as I will if I can add anything that might be helpful in the meantime.
An unlikely but true story.
For the first seven years of my childhood, I lived on a small Alberta farm...one without running water, electricity, or indoor plumbing...hence my Mom was very busy dawn to dusk...which left me LOTS of time to learn to entertain myself. How about the time when I was about three years old, my Mom noticed I was AWOL and after searching the entire house and farm yard (both being so small, it didn't take a lot of time), she discovered me nestled at the end of a row of sleeping piglets...with a very ornery sow (except to little people I guess) at the other end. Then there was the time I decided to take Dad's used, but very new to him, pickup for a test drive. As I got a bit older, and a bit taller, I could just barely spy above the wheat field, my grandparent's farm off in the distance. One day, during harvest, I set off through the field on my way to visit my grandparents, trying to stay hidden from my approaching father in the combine. I can still recall how that day ended...in fact most of my 'creative play activities' would end badly, never to be repeated....until Dad started 'noticing' my 'invisible calf friend'. He nurtured that fantasy, cleaning out a barn stall, putting down some fresh hay and straw and a bit of chop in the trough on a regular basis. Worked like a charm, until the day our one cow, or was it our one steer (can't remember which) was in the pasture close to the barn and in my young estimation, was definitely within 'catching distance'. After 70 years of memory overload, I can't recall too many details other than letting go of a tail once we both encountered the barbed wire fence which left me with a fine scar running down my hand between my thumb and first finger to the tip of my wrist. Back to the barn...my love for my favorite animal still intact.
Years later, I couldn't resist gifting Mom and Dad a couple of 'craft fair cows' for their anniversary....a reminder of my adventure and farm memories in general that we often had laughed over. After Mom and Dad, passed, I ended up with the 'memory craft' and a decision had to be made whether it would make the cull when we moved to Victoria. It did, stored away at the bottom of the cedar chest where both, along with the feed bag, remained until the decision was made in June for a bovine valve replacement.
One more thing. On August, 20, the only two scars on my body will be as a result of a 'bovine encounter' - of sorts.
Late Thursday afternoon, I came home to a voice mail message from my surgeon's nurse telling me that she was confirming my previously agreed upon surgery date and if there was any change that needed to be made to the date, to let her know otherwise she would be sending off the required booking information. It's getting more real I say to myself.
I then sit down and open my emails. There appears before me a lengthy and detailed letter from the surgeon's office (where several surgeons share the same administrative staff) and in bold letters is the date of my surgery. A date that is two days later than my 'agreed upon date'!
I have to wait until first thing Friday morning to call the nurse who left me the message. She is now away on holiday, but my confirmation of the original date is duly noted. Before this nurse can say goodbye, I interrupt and tell her that I have received a letter from the office which states that my surgery date is two days later than the one just confirmed. From our office she asks, to which I confirm. She asks me to 'wait'. Beep, beep is all that I hear for about five minutes before she gets back on the line and informs me that I will receive a new letter shortly. Goodbye. She didn't say anything else, my husband asks, "nope". You didn't say anything about the mistake to her he asks. I look over at him and with a bit of a smirk, I say "nope".....hey I know who holds the golden keys to the Emperor's Palace.
Since the beginning of this journey, I have challenged myself to look for something to be grateful for in all the chaos.
Two things come to mind. Boy, am I grateful for my nurse's confirmation call. On the letter, it mentioned that there could be an unexpected change in the surgery date, including the day of. I started to think, if I had not initially received that phone message, I might have just assumed when I received the email letter, that my surgery date had been 'unexpectedly changed' and received the shock of my life when I received a just after dawn call from the hospital on the original surgery date, "where are you, the surgeon is waiting".
A few years back when we were in Turkey, we were 'taken' to a carpet shop early one Monday morning, After considerable 'pressured negotiation', which included a call home to Canada to have our daughter, in the middle of the night, measure our entrance way, we made a purchase, much to the boisterous celebration of all the 'cousin's' in the shop. After leaving the shop, we questioned 'our cousin' about why all of the excitement. Apparently because we were the first 'sale' on the first morning of the week, we had brought much luck for the rest of their week to the carpet shop.
As it happens, my surgery is the first one on the first day of the week. I like to think, that my surgery qualifies as a 'lucky transaction' and definitely will give our carpet a few hand rubs as I head off to the hospital and close the door behind me in gratitude.
Angiogram Discovers Narrowest Artery on the Planet
Journal posted on July 29, 2018
I arrive early for my 7 a.m. check in, not anxious but resigned. I have read lots of postings on the site, all without alarm...even my Preparation for Your Angiogram booklet reads, "there should be minimal to no pain". Hey I've got this.
My name is second on the wanted poster, but there is a delay and I am not wheeled in until well after 9.
While prepping me, my 'cheerful' nurse says, "oh my, what tiny wrists you have". This should have raised the first alarm. I agree, and naively started to regale tales about how uncooperative my veins are for anyone who thinks they are the cat's meow when it comes to drawing blood from 'tiny' veins. Without pausing, I fill her in on my experience at the lab at the beginning of the week....(one tube out of the right vein and poof, it disappears. Lab tech. 'bravely' tells me she needs two more tubes and I 'firmly' tell her she better start looking in the other arm for a VERY good vein....since she quickly found out looks can be deceiving. Out comes the trusty butterfly needle after spying what she calls a 'juicy vein' on the side of my left arm).
My cardiologist appears and asks a few questions and then says 'this is going to sting a bit'. It did, a bit. But then, suddenly, what is this!!! Yikes I say, this is no sting! (Now, I am wondering if I used such innocent language at the time.) He apologizes and says that my artery is very 'tiny'...in fact about the size of the tube he is trying to push, prod, jiggle and manipulate up my right arm!! He then goes on to say that the tube is apparently scrapping along the inside of the artery wall. Oh man, I think, you don't have to tell me...I can feel, it damn it. Oops, I am pretty sure the language used this time was a bit more 'colorful'.
Finally!! Doc. asks that I be given 'some' sedation. I swear it must have been no more than 2 drops...just enough to keep me from levitating. If it was a 10 before, it was an 8 1/2 now....and I think that was mostly due as a result of the fear factor that he wasn't going to be able to finish the procedure and have to start all over in my groin.
Finally, a warning, you are going to feel warm all over....waiting, waiting.....your arteries are clear. Fantastic news...(but can you just please hurry).
The Cardiac nurse helps me into the wheelchair as I am muttering, my god, I thought this wasn't suppose to be painful. Oh well, she brightly responds, everyone's pain tolerance is different. "Maybe, if you are some strapping guy who has arteries that you can drive a fully loaded semi through!!!"
Upon arrival back at the Cardiac corral, a kindly nurse takes one look at my face and announces she will be right back with the Tylenol. "Extra strength", I call back. Finally, in about 20 minutes and 2 ES Tylenol later, I was able to give any thought to an obvious reminder that I had not eaten anything for the past 14 hours. I make a query to my assigned nurse about the possibility of a snack and maybe some tea? She notes how busy she is this morning and asks if I could wait until lunch....which was not for another 2 hours. I hunker down with my book, hoping to distract myself from my aching upright arm and ever increasing hunger pangs.
Suddenly, kindly nurse appears in my surrounding fog asking if I would like something hot to drink and a warm muffin. I was in no state to hug her....calling her an angel would have to suffice.
Four hours later, the corral gate was unlocked, and I headed home with my care booklet, instructions to keep my arm elevated above my waist for 4 days and visions of my ES Tylenol dancing in my head.
Three days later, I am seriously thinking there is a lesson to be learned here: 'tiny' veins = 'tiny' arteries = 'tiny' aortic valve. Perhaps I should call the surgeon's office first thing Monday morning with this revelation and advise they stock up on XS tubing and super strong magnification equipment suitable for locating 'tiny' valves. On second thought, maybe that 'cow valve' should be cancelled and replaced by one from a 'tiny' calf.
At my request, we have not told anyone about my pending OHS other than our two children and two close couples. All of our other friends live in our old hometown in another Province.
I am currently of the opinion that my husband is going to have most of his time and energy taken up with supporting and later caring for me while also remaining in close 'long distance' contact with our two kids.
At this point, I just feel that 'announcing' my surgery to our other friends will only increase his natural tendency to over commit and feel obligated to keep everyone else updated on top of everything else. I just feel that it would be kind of an achievement to say 'after' "wow, look at what I have just accomplished/survived (many other adjectives also come to mind lol)"
My husband, on the other hand is wondering if our friends might be a bit upset that we didn't tell them 'before'.
Boy, it's not like I need another curve ball in this already nerve wracking situation.
Would love to hear your comments❤️
In the spring of 2016 at my annual exam, my GP heard a faint whooshing sound while listening to my heart. This led to numerous tests over the summer with no definitive answers....until I had an echo done in October. Moderate-severe stenosis. Good grief, what is that, I ask Doc. Well it means you are going to need open heart surgery and have your aortic valve replaced with either a tissue or mechanical valve, he responds. Short and not so sweet. Stunned panic, an urgent cardiologist referral and a requisition for a pulmonary function test.
Google became my best friend. Why do I keep finding descriptions of aortic valve stenosis common among the elderly? Elderly, I am not even old I comment to my husband. He reminds me that with each passing year, I push the needle up the 'what I consider old scale' by several years.
A month later, while starting my function test, the therapist remarks that she sees that I am going to have open heart surgery soon (soon? wait....what?), so it is lucky that Doc. put urgent on my requisition as there is a year long wait list. After that bit of bombshell info, more panic.
Fall turns into winter, Christmas comes and goes. Finally in February, 2017, I see my cardiologist about my pending fate. After a thorough exam, I ask how much time I will have to prepare for surgery. (That was my question out loud, but all the while I was thinking 'how much time do I have left'). "My valve should be good for another two or three years??!!" I felt like kissing him, I was so overcome with relief. If only he had told me that before he took my blood pressure...186/90?! My recollection of bolting through the waiting room is confirmed by my husband.
January of this year, I had another echo done and the questions asked planted a seed of suspicion when thinking about my 'two to three year reprieve'. Over the ensuing months, I have read all the journals and posts on this forum on a daily basis (at least twice, lately).
This community has provided me with the knowledge, information, suggestions, tips, optimism and confidence to CALMLY leave my cardiologist's office a couple of weeks ago, and is helping me feel empowered and in control of my pre-op preparation for surgery for 'sometime this fall'.
Your personal stories have also been an important and inspirational source for re-evaluating my perspective on my diagnosis. It could be more challenging, a LOT more challenging. But the most significant realization is that I now feel very thankful for my "Goldilocks Age' of 70...... not too old and not too young. I am asymptomatic (thus far), have no other conditions other than my stenosis (hopefully as yet unscheduled angiogram will confirm), retired (do not have to factor in my job into the equation) and of an age that I do not have the added stress of deciding between a tissue or mechanical valve.
There is much to be grateful for. Heartfelt thanks.