Heading Out

Time for me to head by home. I was supposed to go to Cambridge this week and attend a meeting but that was cancelled so I now find that I am going to the other Cambridge or more specifically some suburb of Boston or other for a meeting. This will pay for the return leg of the trip and get me home on Tuesday, one day early.

My mother is pretty distraught at the idea of me leaving them behind, but realizes that I have the other half of my family across the pond and that work won't wait forever.

The Boston flight is mid afternoon so I have one last chance to visit the hospital before I go home. The route in the taxi that I have driven and almost every hour of the day and night these past 3 weeks takes me past the crematorium. When this whole nightmare began I looked at that the building wondering when I would be going there. I played and replayed the scenario of my father and I walking out of the hospital and going home- my mothers body in some refridgerated drawer with a label on it. What would we say to each other? How would we eat meals? I'd have to get him to eat... He would need to eat. "Joan would want you to eat." I obsessed about it over those first few days and then each day it seemed less likely, but the crematorium was always there at the junction across the road taunting me. I know I'll be going there sometime, but not this trip.

It's breakfast time and the toast has arrived. My father is heaping marmalade on it. The extra thick kind that mother can't get enough of. They look so cute and inseparable. It's a picture that I mentally snap and will hopefully have for the rest of my life.

As we drive to the railway station my lasting mental snap of Kettering General Hospital is the overweight smokers in their pajamas standing outside in the rain still hooked up to their IV drips whose tubular metalic stands look oddly like coat racks.

Happy Anniversary!

Today was my parents wedding anniversary. My father brought in a card for my Mum and they hugged and kissed. They have been married now for 56 years. It's quite and achievement. One thing I have thought for a long time that has been amplified by the events of the past few weeks- without each other they are very much lost.

3 weeks in the UK

I hadn't realised I've been here now for nearly 3 weeks. One day runs into another and for me in the hospital time is measured by my mothers progress and nothing else. Sometimes it's dark when I leave, somethimes it is light. When I get back to my parents house I eat, sleep and recently I work. It doesn't really matter what the "real" time is, if am hungry I eat, if I am tired I sleep, if I am worried I work. Tescos is open forever. Someone is always on line to work with or for- California, UK, Taiwan, weekdays, weekends, someone is always up and I am working with them to do something that's really important.

The UK seems to be in the grip of an obsession with cookery shows and game shows. Perhaps there should be a game show where the contestants have to answer questions about what dishes which chefs made this week. Perhaps there already is such a show? Perhaps the chefs should answer questions about current events while they churn out another incredible dish that the customers will pay 50p for.

Progressing on Foot

This week has gone better than expected. The physiotherapist had a goal of getting my mother to walk to the window with a zimmer/walker by end of this week and to the bathrooms by the end of next.
However, my Mum managed to get to the bathrooms today which is a major milestone. She needed a wheelchair to get but back, but even so this is good progress. I remain worried that other parts of her health remain slow to repair.

Sleep is one thing that she hasn't had difficulty with, but now she is very uncomfortable and the muscles spasm in her legs wildly when she lies down at night. This seems to be caused by lack of potassium and she is now taking it 3 times a day but with no visible reduction in her jitters. She lies awake and night crying with the discomfort until sleep finally comes around 1:00am and I can go back to my parents house. At least when she does sleep at night it is for most of the night i.e. the 5 hours and 30 minutes up until the oh so cheery cleaner crashes her way through the ward emptying the bins and shouting "Good Morning" at 5:30am!

Getting Mad

I spent the evening getting irritable with my Mom. Then Dena phoned when I was trying to get my Mom to sleep, then Dena phone again and now I was getting really mad.

Then I stopped and wondered if it was time for my medication. It was, and within 15 minutes I wasn't mad at anyone any more.

I think that I, more than most people, know full well that my moods and personality is chemically driven. But this is really in your face, well in my face actually and I don't like it.

That feeling of growing irritability that comes on me from time to time has been a part of me for as long as I can remember. It doesn't happen often, but it does happen. Now I know why it happens, it is part of the disease- the disease is part of my personality and I can shut it down with 3 little white pills.

This is very disconcerting.

Easter Hiatus

The Easter holidays brought a total hiatus to my mothers progress. No physiotherapists, no doctors who knew her case more than what was on a few sheets of paper and no nursing staff qualified to set up her breathing apparatus.

Don't get me wrong. Everyone is entitled to go on holiday some time and I am quite sure the staff had more than earned their Easter break. However as a patients Mum on the end of what simply looked like poor hand over I did find it frustrating.
Still my Mum did manage to prove that she was well enough to go without the big breathing mask at night, since one night they forgot to put it on her!

Where did my mother go?

My mother made it into the big blue chair beside her bed. This is the chair my Dad and I take it in turns to doze in during the night. For my Mum it’s a pretty exhausting experience so she spends most of the afternoon asleep. At least she doesn’t have an oxygen mask on anymore, just a direct feed into her nostrils. This means she can put actually pick up a cup and put the straw in it to her lips. When I arrive my Dad proudly gets her to demonstrate and I applaud with some relief. This is a milestone that I have been waiting for.

As I look at her there dozing away the afternoon I realize this really isn’t that much different from how she has been normally at home these past few years. But now sometimes when I look I see my Mum and sometimes I see a sick little old woman in a big blue chair in ward full of other sick little old women in big blue chairs dozing the afternoon away. It’s a horrible feeling, for in these moments this person isn’t my mother anymore.

Progress

Pat and Philip have headed home and today is supposedly crunch day when the Consultant and his entourage re-asses my mothers status. In reality very little actually happens or is said. My mother is said to be making "good progress" and tomorrow they will try and put her in a chair.

One good thing is that she is now eating 2 pureed meals a day and sometimes gets so full her stomach aches. It pleases me no end to see my mothers appetite returning and with it she begins to sleep better at night- no more trippy midnight picnics.

Visits

Pat and Phillip came up yesterday and Ali joined us all today. I am very grateful she is up here and had good chat with her as I need to understand what the options are. I feel like I am in limbo and in reality we all are until Monday when the doctors will re-asses my mothers health. For sure she is looking better and is now eating food, but that is as far along as we are. She can’t feed herself or even pick up a water glass. She is simply too weak to move. She can’t be off the masks as without a constant flow of oxygen she rapidly turns blue and level of oxygen in her blood dips dangerously low. How do I know this? Because a junior doctor decided she was stable and took her off all her masks without telling her nurse and without monitoring her heart rate or blood levels. "Oh." I thought, "This is progress", and went to get here straw for her water. By the time I came back the nurse was fitting the mask again and looking quite concerned at the levels on the monitor she had reconnected. The junior doctor won’t look me in the eye anymore

The Witching Hour

It’s Friday now- 2:30am. My Dad and I are taking it turns to be with her throughout the whole of each day. She’s terrified of hospitals and can’t manage on her own at all. We take it in turns to comfort her, give her water and a chocolate food supplement that she really seems to like the taste of. Last night she asked for some pizza and I managed to rustle up a mushroom and cheese pizza from one of Kettering’s find dinning establishments.

I have decided to stay on California time which means I get the night shift from around 9:00pm to 6:00am. I am quite concerned that my Dad is going to burn himself out and although I know he won’t sleep well for worry I at least want to give him the chance to sleep at a normal time.

The night shift a tough one as it includes "the witching hour"…. Last night I had a long and interesting conversation with my Mum until around midnight.
"I feel hot" she told me and I checked her head. Yes, it was a little hot.
10 minutes later she says:
"Well I’m not going to do this again so we might as well have a party. Have you brought the ice cream?"

She has gotten confused but luckily quickly falls asleep until 2:00am. I do the same and am awoken by her scrabbling to take off her mask.
"You don’t understand, I don’t want to play this game anymore." she declares.
I get the nurse and we agree she can wear the smaller mask for the next few hours and the nurse fits it. As soon as the nurse is gone my Mum snatches it off again and holds the strap firmly in her hand refusing to give it to me.
"I’m not wearing this." She declares.
"But you need to."
"Well I’m not, and you can’t make me."
The nurse returns and calmly tells her that she must wear it.
"Well I’m not going to."
I think fast: "No mask, no chocolate drink."
"He’s a tell tale tit." My Mum tells the nurse and agrees to have the mask on again and I feed her the chocolate drink through a hole in it.

It’s really weird to have a parent who is completely lucid and together in the day and a couple of ice creams short of a picnic at night, but I’m told that this often happens. When will it stop?

First Impressions

My late Uncle Charlie’s description of Auntie Chrissie in hospital seems all too fitting for my Mum. "She was like a wee rag doll." My mother looks very small indeed in the bed, her head covered by a big mask that is pushing oxygen into her lungs. She is surrounded by friends that used to work with her in different jobs.

Seeing my shape she manages to say through the mask, "I knew you’d come."

"Of course." is all I can manage.

>0

My mother was supposed to die last night. At least that is what the doctors told my Dad would happen. She had slipped into a comatose state from which she would never wake up. But as my Dad sat with her through the night she did wake up and as morning came the doctors and nurses came and went patching up her frail body- draining fluid here, re-inflating a lung there and putting her on a mask that helps her to breathe.

What do I do now? I know I need to go, but will my health stand this? The Cardiologist was fairly bullish about me being able to carry on as normal for the next 2 weeks, but he doesn’t realize how tired I’ve been. I have an appointment with him at 4:00pm which means under normal circumstances I’d have no chance of catching a plane to London on the same day. But these are not normal circumstances… with the US hour change and the fact that Heathrow have told Virgin not to turn up until after 12:00 ‘cause there are no stands the 16:30 flight to London is now 19:30 so I could do it.

I gamble that the Cardiologist will say yes and go ahead and book my flight using air miles. If he says no then I loose the miles and $400+ in taxes. So what? Luckily after he has tested me and I explain the situation he says yes and by 21:00 I am sitting alone with my private grief at 30,000 feet.

The Blow

Today I really wanted to go over the hill to Santa Cruz and Capitola as we have done some many weekends, as if nothing had happened this past week. One family, with the Dad in it doing well and enjoying his wife and kids.

We were late getting to the coast as we went twice: once with no money and the second time with. We plumbed for lunch at our usual haunt Vassili’s first and I was halfway through my gyro when Ali called. I knew it wasn’t going be good news as Ali always texts first. My Dad had called an ambulance for my Mum and she was in hospital. This wasn’t out of the blue; Ali had kept me informed of my mothers decline over the past few weeks. It’s just when these things finally do happen, the awful reality sets in. That’s why she had sounded so ill yesterday. That’s why the phone was off the hook when I called this morning. That’s why there was no one answering.

Ali calls the emergency department in Kettering to get more details while I pay the bill for lunch. Dena is very distraught: She hadn’t phoned my parents when I was in the hospital because I didn’t want them to known (it would have sent my mother over the edge with worry) and Dena didn’t want to lie and pretend I was at work.

Ali gives me the number for the emergency department and I get my Dad on the line. He is talking very, very fast, and it doesn’t sound good.

What do we do now? Dena wants to go home, but what will that do? My mother liked Capitola and Mr.Toots coffee shop so I propose we go there and remember the times we had with her there. We do just that, sipping (decaf) cappuccino at Mr.Toots and letting the kids play in the sand and surf till their dripping. A normal weekend event for them as Dena and I hold each other and wonder what will happen next.

Nancy’s Birthday Party

Each day I think I have been getting stronger. I made it upstairs twice today and felt pretty good.

Tonight was Nancy’s Birthday Party. Dena had planned our attendance meticulously including a babysitter at Nancy’s house not far from the venue in Walnut Creek. I don’t want to disappoint Dena so I figure I can do this (albeit that I can’t have any alcohol) and we drop the kids off and head for the venue. Parking in Walnut Creek is always difficult and we end up round the corner from the restaurant. For me it’s a big corner though and I find that the walk really is very tiring indeed. Still I make it and hook up with Bob, Marty and Ann (Marty’s sister).

We all get round a table and are joined by one other couple. At first I feel sorry for the couple since they don’t know us and can’t really join in the conversation. Little did I know they were just biding their time, waiting not just to insert themselves into our discussions, but to divert, control and monopolize the conversation to focus solely on them and how wonderful their life as retirees has been. They go on and on, ignoring all verbal and visual clues that we really didn’t want to know anymore about their little lives guiding bus loads of old people around Mexico or their love English Breakfast tea in the middle of the night.

"You should try retirement too." the guy tells Bob without any knowledge or consideration of his circumstances.

After the couple finally left I congratulated Bob on not decking the guy and so did Dena!

Doing Stuff

The first thing I have to do today is go to the warfarin clinic and have my anticoagulants checked. I find it ironic that this is the same day as my mother has to do the same thing. It’s a long walk from the parking structure to the Cardiologists’ office but I go slow and am pronounced suitably thin on the inside. I just have to keep taking my daily dose of rat poison and come back in a week.

From the clinic I head on to downtown Sunnyvale to meet up with Elan. My mind seems disengaged and I catch myself doing 50 on the inside lane of the freeway. That isn’t me! My concentration seems shot, but I force myself to drive a little harder and be more observant.
I had planned to spend the week working with Elan on marketing plans but it was not to be and once again she has ended up in the deep end which she does very well at. We do (decaf) coffee and lunch at Dish Dash (real food! I have so been looking forward to this) and I hand her the development board I borrowed to no avail. Driving back I note I am slow again and continue to coach myself on concentration and observation.

Home again, I crash out in a chair completely exhausted and sleep for over and hour. I find my sleeps are quite refreshing but wonder how long it will be before I don’t need them in the afternoon.

Day 4

The cardiologist wants to keep me in another day. We talk, and I point out that it would be better to send me home today (Thurs) in case something goes wrong tomorrow (Fri) rather than have something go wrong on the weekend. He likes my logic but not my heart rate and prescribes another additional beta blocker to slow me down still further.

The paperwork is drawn up, I dress and get wheeled to the door. I’m a free man (with a lot of prescriptions) and in reality all I am really free to do is go back to bed as I am quite exhausted and feel my heart race whenever I do anything. But at least I am in bed in my own house.

Day 3

I want to go home. I so want to go home. I’m sure I can manage. But the doctor wants me in for another day as my heart continues to run away with itself. I’m off the drug drip now and am taking all my heart medication orally. I am also on blood thinners to prevent clots and this is given by injection into the fatty tissue of my stomach and hurts a fair bit. The injection is given carefully so as not to bruise me and the only nurse who fails to do this carefully enough is of course Nurse Cathleen who leaves me black and blue on my left side. Sigh!

Day 2

Day 2 is all about waiting. They took an ultrasound of my heart yesterday which will tell the Cardiologist if I have clots in my heart that can kill me or a misshapen heart due to all the arrhythmia. I find my asthma has come back with a vengeance and when I do finally get up to use the toilet, I can’t stop coughing. I ring for the nurse but can’t speak. The guy in the next bed shouts for me and Nurse Cathleen comes to the rescue. Well not exactly: Nurse Cathleen comes to tell me that my heart rate, oxygen levels and blood pressure are all fine and so I should just relax.

"But I can’t breath!"

"No everything is fine. We can see it on the monitor."

At this point Dena, who happened to be visiting, gets very angry indeed.

"Can’t you see he is asthmatic?"

"He never told me he had asthma when he came in."

"Oh yes we did, I told you!"

Out gunned by my dear wife, the nurse disappears quickly only to reappear after Dena has gone to tell me how hard she has worked to find a doctor to approve my new breathing treatments. I play along and thank her very much. I’ve been on a nebulizer once before and it really works for me.

As evening falls the Cardiologist stops by again to tell me he is going to refer me to Dr. Peterson the thyroid specialist. "What about my heart ultrasound?"
"Oh that’s fine. Sorry, meant to tell you this morning."

Phew!

Dr. Peterson turns out to be a very skinny 50+ chap with a serious and deliberate manner. He asks me a number of questions, all of which I have already asked myself time and time again when I have tested myself online for "What thyroid disorder do you have?"
The results on there own are inconclusive but Dr. Peterson has the trump card- my blood work.

I am diagnosed with Graves Disease which is a disease which either causes or is a form of Hyperthyroidism where the thyroid is attacked by my immune system and goes into overdrive as a result- spewing thyroid hormone into my body and driving my heart to the edge.
It’s nice to know what I have but what now?

The treatment is pretty standard. I keep taking heart medication to keep my heart rate down. At the same time I take a thyroid suppressant that will gradually cut down my thyroid levels. I won’t see any significant change (improvement?) in my thyroid and consequent heart rate for 2 weeks. The whole thing is a little nerve racking to me as if my heart rate is being lowered with drugs because my thyroid is trying to push it up, what happens when the thyroid stops trying to push up my heart rate? "We’ll monitor you." is all both doctors will say to this.

After that 2 week period Dr. Peterson will nuke my thyroid (literally) with a cocktail of radioactive iodine. The thyroid it seems is the only organ in the body that thrives on iodine- so put radioactive iodine into my body and my thyroid slurps it up and snuffs it!
After that I will take artificial thyroid for the rest of my life like so many other people out there.

The End?

9:00am and I am driving to the doctors. I'm not looking forward to this visit much but realize I need to find out what's wrong with me. I'm going to be facing a barrage of "When did you first notice this?", "Why didn't you come in before?"

The answers are pretty simple- I noticed my heart was randomly going off beat about a year ago, but it always went back to normal. During that year I underwent a lot of stress, sleep derpivation and caffiene excess. It was deliberate, I did so because I wanted the job I had been given to be a success for me and the rest of my team. I believed in what I was doing. C'est La Vie! I don't have the job now anyway. With all the stress and the caffiene I figured that was why my heart was going out of whack.


After a couple of pointed questions from the doctor she decides to take my pulse- one handed, then two handed. "Hmmm... pretty eratic pulse." she comments. Then she puts on her stethoscope and listens to my heart.... "And we will have the ECG machine in here NOW!" she barks at her nurse.

Next thing I know I am wired up lying flat on a table and the ECG machine does its thing very quickly. I can't make head nor tail of what the trace means but I do note that some of the lines are off the graph paper which can't be good can it?

"Not good?" I enquire sheepishly.

"Don't worry." replies the doctor and hurries out. When she returns she has a photocopy of the ECG trace. "Take this, and go immediately to A&E (accident and emergency) at Good Sam, they will be expectiing you."

Since it is on the way I drop off my car and have Dena drive me there withFiona in tow. This day is turning sour rapdily and I'm not sure what to expect next.

The Triage Nurse at A&E does indeed know to expect me and says "Oh, yes your are 'A flutter boy', take a seat." So I do, and watch and wait as a plethora of patients are called through by the nurse into A&E.

"Well you can't be too bad, since the triage nurse is sending all these other people in before you." Dena points out.

When the room is empty (and our stomachs too) Dena asks the triage nurse if I will be admitted soon and if she can bring some food in with us.

"Who are you?" enquires the triage nurse. "Did you fill out a form? If you didn't you don't exist to me."
Nice to find this out after an hour. So I fill out the form and am allowed into the triage nurses inner sanctum. She checks my vital signs and then things start to go into overdrive. She calls urgently for a cubicle and when she is told number 4 is available she won't let me walk to it. My heart is going so fast she insists on putting me in a wheelchair and wheeling me to it in case I top 200bpm.

As soon as I am in the cube an onterage of nurses file in and wire me up to monitors, drips, ECG machines and blood pressure testers. The stress of all this does indeed take my heart past the 200bpm barrier. Then a doctor arrives and they all look at the monitor. My heart is going so fast they can't see what bit of the heart is doing what. So the doctor decides to do a "chemical reboot of my heart" as they called it. The ideas here is that if they reboot the heart there will be a short period of time while it spins back up to its insane speed and in that time they can see on the monitor what bits are doing what before it all becomes a blur.

The first time they try this nothing happens so they decide to double the dose. At this point I realize that something could go horribly wrong and try to get Dena to come over in case it does. I'll never forget that moment as long as I live- she doesn't come and suddenly my body weight slams into the bed, I get very hot and gasp for breath. And then it's over. 6 seconds of absolute terror for me and a perfectly normal procedure for the A&E team. Result: It's a Atrial Fibrillation which is the lesser of all the random heart beat problems. This was what I thought I had from talking with Ali and Richard the week before- I just didn't realize I had it at 200bpm!

Now they can treat it and give me a drip of Dialtizem which gradually slows down my heart over the next few hours. The beat is still totally random.

By 4:00pm the A&E team as satisfied they have stabalized my condition and find me a bed in the cardiac ward. Around 6:00pm my (newly assigned) cardiologist Dr. Siegel comes round for a chat. He explains Atrial Fibrillation and what can cause it. There is good news and bad news. The bad news is that Atrial Fibrillation can cause clots to build up in my heart and if they "convert" my heart to a normal rythmn those clots could give me a stroke. Also the cause of the Atrial Fibrillation at this point in unknown and could be an electrical or physical fault with my heart. Either way my chance of stroke starts out in the less that 1% per year range. But this compounds like interest at a bank and by 10 years I wouldn't bet on being alive if I have this problem. I'm left to digest this and my hospital meal for an hour or so. Then around 8:00pm Dr. Siegel pops his head round my curatain to tell me "It's your Thyroid. They just posted the results" which is good news as it means something else is causing my heart to go out of whack not my heart on it's own.


Life on a ward is quite different to life in the A&E. For a start time moves much slower and there are far fewer staff per patient. The nurse looking after me (Cathleen) asks me lots of questions and types the results into a computer. She is efficient and friendly following her procedures but that seems to be where it ends.

Towards the end of her shift my drip feeding me the drug to slow my heart down runs out. I ring for help. 15 minutes passes and then Nurse Cathleen appears.
"Oh dear, I don’t have that. I need to go to the pharmacy to get it." she declares and disappears for another 30 minutes. This is not good and I am starting to get anxious.

When she returns she brings her shift change nurse with her. She fiddles with the IV tubing to my wrist and declares that she can’t change the drip because the A&E people use different tube connections. She then gets some "surgical" pliers and wrenches one of the couplings loose. My blood spills everywhere. I point out the tap between me and the rest of the IV couplings and show her how to turn it off. At 60 minutes and counting the nurses finally couples me up to the new drip. The machine that measures the drug feed then bleeps madly for another 15 minutes due to large pockets of air that have gotten between me and my drugs. I’m not impressed.

The night shift nurse asks if I have "ambulated" and I tell her no. She asks me to walk if I can so I do, but with 60+ minutes off my drip my heart goes mad, alarm bells ring and I am put to bed with a bottle to pee in.

Beach Cleanup

Alexander's Cub Scout Den were assigned a beach cleanup in Santa Cruz. We all went along and had a good time and I think the beach looked a lot better afterwards. It was a really nice day out and the boys had plenty of time for some horseplay afterwards.

The hard of flash can click here