NOTE: Read from the bottom of the page for chronological order – (i.e. the most recent post is at the top of this page).
Thursday, February 7, 2013
I’m feeling pretty good. We’re worn out but otherwise doing pretty well. I’m supposed to spend 48 hours in bed or on the couch, getting up only to go to the bathroom. The 48 hrs. ends this afternoon, then I can gradually start normal activities while still taking it easy for a few more days.
I could barely understand the cardiologist gobbledegook but it seems two of the grafts they put in 10 years ago when they did the bypass are no longer holding and one vein is so diseased it’s useless and one artery — I think it’s the main one on the left side — is about 30 percent blocked. All that may sound horrible, but the doc said my heart is working fine and he didn’t seem very worried.
After thoroughly exploring my heart with a little tube run up from my groan he decided not to try anything new but to keep treating it with medicine.
Bottom line: I think I’m gonna be fine.
Wednesday, February 6, 2013
The cardiac cathereization yesterday shows that two of Alec’s three vein grafts from the triple bypass have closed at least partly. His doctor says his heart looks good though and they can treat with meds. The photo to the left is when he was filing out paperwork before the test.
See National Institutes of Health’s What To Expect During Cardiac Catheterization
An excellent animation on the page shows the process of cardiac catheterization.
Tuesday, January 30, 2013
Facebook wants to know how I’m feeling. I could be better. Next week I’m going into the cath lab for about the sixth time in 10 years. Not fun. Despite triple bypass surgery, five stints, tons of medicine and a healthy diet and exercise, I now have a blocked artery near where the bypass was, so they have to run a little tube up from my groin to my heart to see just where it is and how bad it is. There, Facebook. That’s what you get for asking nosy questions.
Sunday, June 27, 2010
Rhabdo – from Alec’s blog…
Gabi has been diligently posting updates on Facebook about my recent illness, and I canít begin to tell how many wonderful friends have wished me well. I can never thank them all in person, nor can I thank all the nurses at St. Pete’s. They were terrific.
So hereís the story of how I was struck down by a strange and creepy muscle-eating disease (slight hyperbole).
It started while playing water volleyball at the Y with a bunch of old farts and a few youngsters (50-something to 80-something). Suddenly, when I hit the ball, there was a stabbing pain in my forearms as if I had strained muscles in both, and then my legs started aching and I got tired more quickly than usual. A few days later we went to Costco to pick up Gabiís new glasses, and on the way in the store I stubbed my toe on the edge of a carpet and was momentarily thrown off balance. I thought Iíd caught my balance when all of a sudden I felt weak and dropped to my knees. Gabi uses a walking stick because she has balance problems of her own due to a combination of inner ear problems and neuropathy. So I grabbed for her walking stick. I wanted to push down on it to help myself up, but she wanted to help pull me up, so we ended up briefly fighting over the walking stick and making a spectacle of ourselves right there in Costco.
After that I began to notice more and more that it was all I could do to lift a pot off the stove or bend over to put on my socks or lift myself out of the bathtub. And then my pee turned dark. It was the color of Coca-Cola. Gabi told me I had to see a doctor. This was on a Thursday or Friday and I had already scheduled a physical for the following Tuesday, so I figured I could wait a few days.
Meantime, I have chronic unstable angina, which weíve been treating and watching closely for years, with stints, surgery, medicine, diet and exercise (Dick Cheney’s got nothing on me, ‘cept the only thing he exercises is his big mouth). When the attacks started coming more frequently (three Friday), and then two more during the night waking me up at 3 a.m. and again at 5 a.m., we knew it was time to call 911.
They ran blood tests and the ER doctor said I had elevated CKP enzymes, which meant nothing to me, and a condition Iíd never heard of called rhabdomyolisys. He described it as muscles dissolving all over my body, a description another doctor later said was very inaccurate.
From Wikipedia: Rhabdomyolysis (often shortened to simply “rhabdo”) is the rapid breakdown (lysis) of skeletal muscle (rhabdomyo) due to injury to muscle tissue. The muscle damage may be caused by physical (e.g., crush injury), chemical, or biological factors. The destruction of the muscle leads to the release of the breakdown products of damaged muscle cells into the bloodstream; some of these, such as myoglobin (a protein), are harmful to the kidney and may lead to acute kidney failure. Treatment is with intravenous fluids, and dialysis or hemofiltration if necessary.
Rhabdomyolysis and its complications are major problems in people who are injured in disasters such as earthquakes and bombing. The disease and its mechanisms were first elucidated in the Blitz of London in 1941.
The ER doc said (I paraphrase) You’re on statins and guess what is a side effect of statins? CKP.
He sounded rather proud of himself. At that point I had no idea what the hell he was talking about.
Then they sent an internist in who tried to explain it more thoroughly. He scared the crap out of me. He started talking a lot about end-of-life procedures and do-not-resuscitate orders. I understand they always have to ask about that stuff, and we came prepared with paperwork, a living will, durable power of attorney and all of that stuff. But as he was talking I was thinking why is he going into such detail about chances of survival when brought back after a few minutes or hours as opposed days or weeks? I did not want to hear that crap.
They checked me into the hospital and hooked me up to IV fluids and a heart monitor. I asked a lot of questions because Iíd never heard of this stuff before. My cardiologist said he didnít know what caused it. He said he knew it was a known side effect of statins, but Iíd been on statins for eight years with no side effects, and heíd been monitoring by CKP level. It was 230 the last time he checked, which is apparently within a safe range, even though one nurse told me the normal range is under 100. My CKP when they brought me into the ER was 32,000. Yes, thatís three zeroes on the end. So they flushed my system out and brought it down day by day: 2nd day, 19,000; 3rd day13,000; 4th day, 6,800; 5th day, 2,900 (if I remember the numbers correctly). That’s when they sent me home. Now I guess the treatment is just to relax, drink a lot of fluids, avoid strenuous activity, and wait and see. I’ll be seeing my docs frequently.
My first day home I slept nearly all day. So did Gabi. Yesterday was my second full day at home. Friends came by and brought me food. The visits were wonderful but a little exhausting, and we’re deeply grateful for the food and friendship.
A health update from Alec:
I had a follow-up appointment with my cardiologist yesterday and thought I’d update a few friends. First, he explained a little more clearly what’s been going on (although I’d seen the pictures, we had not discussed it in detail). He described the blockage as “impressive” and said he put in the longest stent he had in order to open up where the artery was blocked and also reach to another smaller blockage, which it barely did. Plus, there’s another small blockage that he did not open up. He doesn’t want to do any more than absolutely necessary because he’s working where there’s already a graft.
Since the procedure I’ve had very low grade angina daily. It’s barely noticeable. The cardiologist characterizes it as “atypical” and seems a little concerned. Next Monday I’m going in for a stress test. Assuming it goes OK, I’m going on vacation Thursday-Sunday of next week (that means my columns in the Volcano and TNT won’t run the next week). We’re going to spend a few days with Gabi’s sister at a resort in B.C.
That’s all, folks. I’ll try to keep you posted.
Posted on Alec’s blog – Please go there if you want to leave him a comment
Friday, August 22, 2008
My aching heart
I’m sorry if I was a day or two late posting my latest theater and art reviews, but I was in the hospital with a broken heart — almost. An artery almost completely blocked. I went to the hospital with chest pain Tuesday night about 10 p.m., and Wednesday morning I went into the cath lab to have a stent put in. The procedure itself is just a little bit painful, but the recovery is horrible. You have to lay on your back for up to 8-10 hours (I think it was 10 this time). The main thing is you can’t move your leg where they inserted the tube in the femoral artery from the groin up to the heart, because if you do it might start bleeding, and from what I hear that ain’t any place you want to be bleeding. Once out of danger of bleeding out from the femoral artery, however, the recovery is quick and easy.
They discharged me about 10 a.m. Wed. Wednesday night I went to the State Theater with my son, Noel, to see Harlequin Production’s “Psychopathia Sexualis,” which I will review for my TNT column next week. Here’s a sneak preview: It is — despite the weird title — a comedy, and it is really good.
and then on his blog:
Saturday, August 23, 2008
More on the heart procedure
It was all research anyway. Me going to the hospital, I mean. OK, not really, but ‚Ä¶ One of the characters in my new novel has a heart attack and when he fails to recover as well as expected his doctor goes back in with a catheter and finds a blocked artery and puts in a stent. Having undergone that procedure before ‚Äì thus refreshing my memory ‚Äì I might be able to rewrite that scene and make it a little more vivid. And more comical. There were definitely some comic aspects.
I haven’t said anything about my earlier bouts with heart disease, but for those who don’t know, I had open heart surgery in October 2002 ‚Äì a triple bypass ‚ and went back to the hospital with complications repeatedly over the next few months, getting a balloon angioplasty and having two stents put in.
It wasn’t much fun. During one of the angiograms my heart stopped and they had to shock me with the paddles to get it started again ‚ just like in the hospital shows on TV. It’s scary to think about it but I was totally unaware when it happened. The doctor had told me to let him know if anything felt odd during the procedure (yes, it has to be done with the patient completely awake). And there was a moment when something felt not right, and I started to say something, but then the next thing I knew the doctor was saying ‚ Well that was unexpected‚ and I think he said he was sorry and asked if I was all right. I had no idea what he was talking about ‚ the memories are fuzzy.
I’ve had small bouts of angina almost every day since the operation back in 2002, and I’ve talked to my cardiologist and had numerous stress tests, etc., and it’s never been anything to worry about, so when I started having pain in my chest and arm Tuesday night, I figured it would go away, and I didn’t say anything. But it didn’t go away, and it started getting stronger. It had started before dinner (we went out to El Sarape, a great Mexican restaurant), and it was 10 p.m. when I finally asked Gabi to call 911. She was pissed at me for not telling her sooner.
They gave me lots and lots of medicine ‚ pain meds, nitro, oxygen, and I slept through the night and went in to the cath lab Wednesday morning. They shaved my groin on the right side and poked around a bit, then for some reason decided the left side would be better, so they shaved the left side and went in with the catheter.
During the procedure I started feeling like I had to pee. You know how sometimes when you can’t get to a bathroom and you have to pee so bad that it hurts and you can’t hold still? That’s the way it was, but they were poking around from my groin to my heart. It didn’t seem like a good time to take a leak. Finally I said something to the doctor about it and he told a nurse to give me a urinal. She placed a urinal between my legs and positioned me in it. (You have to put aside any sense of shame in the hospital.) Once I was in position, the doctor said, ‚Let her rip if you can.‚Äù
Ooh, what a relief it is!
After it was over and they showed me before and after pictures of the blockage and wheeled me back to my room, I had to lie on my back and not move my leg for two-to-four hours until they could remove what is called a vascular closure device. It’s like a very thin straw about six inches long that is inserted into the femoral artery. Removing it always takes at least two nurses (in my case a third one was observing). They have to put tremendous pressure on the insertion point to keep it from bleeding while they pull it out. I recall that it was extremely painful the first time I had this done, but this time it wasn’t very painful. One of the nurses noticed that I’d been shaven on both sides and commented on that. I joked that now I could wear a Speedo, and one of the nurses said she saw an old man wearing a Speedo once and it was a horrible sight to behold. I guess I won’t try wearing one anytime soon.
As I said in my previous post, I had to lie on my back without moving my leg for another six hours. It wasn’t so bad. They gave me morphine for pain and I managed to sleep fairly well. They sent me home the next morning. And that’s about it. Right now I feel fine.
Oh, BTW, did I mention that when I had the bypass surgery I was released from the hospital on Halloween day? My nurse, a male nurse, came to work in drag that day dressed as Nurse Ratched from ‚”One Flew Over the Cuckoo’s Nest.”
P.S. After my surgery Gabi posted updates on her website without any links but she gave family and friends the url so they could keep up with my progress. If anyone really wants to read all the gory details, it’s still posted on (this page).
Tuesday 12/10/02 9:00 pm
Starting Thursday Alec took only acetaminophen during the day and that worked well. Saturday night instead of taking the pain med tablets at bedtime he took only the acetaminophen and has been sleeping well through the night. YAY!
Alec had a couple of not-great days in this… low energy and some pain but not a lot — and not angina. And then the last couple of days he has felt better again. Sunday he drove for the first time to our PFLAG meeting and then to the store on the way home. Monday he went to his first cardiac rehab appointment — a half hour class (this one was on hypertension) and then an hour of monitored exercise.
Today we went to the hospital and had his chest x-rayed and then took the x-ray to the surgeon who said he is doing fine. He said his x-ray showed his surgery is healing really well and that he can do what he feels up to. About physical activity he said to pay attention and “it if hurts, don’t do it”. He said Alec could go back to work as he felt up to it. And he looked at the incision — the ‘zipper’ on Alec’s chest — and saw the one small scab that was still there but that it was otherwise healed closed. He flicked the scab which came off easily. So the surgeon said we didn’t need to see him again.
When we got home Alec announced that he was going to take a bath — he has had to shower since the surgery because he couldn’t soak while the wound was open and because he couldn’t push up to get out of the tub because it would strain his chest. He REALLY prefers a bath and he really enjoyed that! And then he emailed this to me tonight — what does that say about our communication skills! 😉
From: Alec Clayton
To: Gabi Clayton
Subject: Post this?
Here’s something for my heart page. Add to it or change it as you see fit:
This is Alec jumping in on Gabi’s site with what I hope will be the last thing posted on this page. At this point in my recovery there shouldn’t be any new developments. I’m able to drive again. I’m off the heavy duty pain medication, and I should be able to rapidly resume normal activities.
I want to thank all the many wonderful friends who have written and called, and who have delivered food and driven us to doctors’ appointments. There have been so many who have gone out of their way to help us and who have expressed kind wishes that there is no way and can thank each of you individually. And Gabi, of course, has been marvelous through it all.
It’s great to be alive! Love to all,
Tuesday 12/3/02 9:30 pm
We saw the cardiologist this afternoon and he said the treadmill test showed nothing really major. That’s good. He showed us the pictures (like x-rays only smaller and more mechanical looking) which didn’t make any sense to us but said the little bit of abnormality it showed is from the blockage he saw during the last angiogram.
He said that the fact that Alec has not had any more angina since the trip to the ER is good and that the med the doctor there prescribed for his stomach may be what is helping because all the stress of this — the physical trauma to the body and the emotional stress of going through all this can cause esophageal reflux and that can cause even the angina-like arm pain that Alec had. He said for Alec to stay on the meds he is on now but agreed with us asking if Alec should work on weaning off the stronger pain med to acetaminophen and then he should be able to drive again — to see if he can do that before the appointment with the surgeon next week (Tuesday).
Alec also now has an appointment on Friday the 13th with our family doctor to check in on all this and see how he is doing. Speaking for himself on how he is doing, Alec emailed this to a friend and copied me on this morning. It is shared here with Alec’s permission:
I’m feeling better day by day, but still low on energy. I’m doing some writing now (a weekly art review column). It takes me about two hrs. on the computer to knock out a 650-word column, and that just about knocks me out. After doing that I have to rest for an hour or two before I can do anything else. I also check my email twice a day and read and answer only the ones that look extremely interesting or important (I’ve unsubscribed to all the lists I’m on and I’m in no hurry to resubscribe to any of them).
Up until the surgery I was hard at work on another novel. I’ve finished the first draft and I’ve been working with a friend who is a terrific editor. I’m re-writing chapter by chapter with her help. I rewrite one chapter, send it to her, she sends it back with suggested changes, I make the changes (or, when appropriate, tell her she’s full of shit), and then send her the next chapter. I’m keeping slightly ahead of her, so I’ve rewritten through chapter 8, while she just finished chapter 6. It’s a much larger book than Until the Dawn, and I’m getting excited about it. Unfortunately, I haven’t had the energy to work on it since the operation, but I think I’ll be up to it soon.
Thursday 11/28/02 7:00 pm
Last night at bedtime Alec had a very itchy rash on his lower back. He took a benadryl and that helped — he slept through the night. Today he has had a good day. He has more energy — took two walks with me (and he was the one pushing us to go) and he washed the dishes. He is still having some pain (the chest incision, not angina) and breathing trouble but those haven’t been a big problem.
Wednesday 11/27/02 1:15 pm
We’re back from the treadmill test. Pam and I got Alec checked in for it and then went to visit her mom and run a couple of errands. Alec will see Dr. Wolfe next Tuesday afternoon to find out the results. Now he is taking a nap — he said he is tired but not having any pain other than a little tightness in his chest which he thinks is just the incision still healing.
Wow November is almost over!
Tuesday 11/26/02 7:45 pm
Alec saw Dr. Wolfe, the cardiologist, this afternoon and he decided to have Alec do another nuclear imaging treadmill test (he had one before the first angiogram) and see if that will show what is causing the angina. So we go in tomorrow morning at 9 am — it is a 3-4 hour test (with two breaks built in.) Pam, who took us today is going to take us for this one. Hopefully they will figure it out with that.
So then we had a quiet afternoon at home. Alec got a little exercise getting out to the doctor today and has been doing some walking in the house. No big plans for tonight. Just hanging out. I’m catching up on some email and work (in other words, sitting here in the living room half watching television and working on my laptop.)
Tomorrow when we get home I’ll make homemade cranberry sauce for Thursday. We are going to Catherine’s for Thanksgiving dinner. We do have a lot to be thankful for.
Monday 11/25/02 6:30 pm
We got back from another trip to the emergency room a couple of hours ago. Alec started having angina again this morning and took nitroglycerine and it did nothing to stop the pain in his arm. After 15 minutes he took another and it did nothing. He called doctor and they said to go to the ER so we did and Alec took the third nitro tablet on the way. He was still having the pain in his arm and some shortness of breath when we got him there and they checked him in and did all the tests and exams over about 4 hours, added some nitro cream. The angina came and went some and so did the breathing problem. They gave him a prescription for calming stomach acid/upset (?) and told him they would let us know if the last blood test showed something we needed to know – one that they took just before discharging him. They said to make an appointment to see Dr. Wolfe as soon as we can and come back if this happened again and nitro doesn’t take care of it. This is scary and frustrating. I guess we are doing the best we can with it.
Alec is having some continuing very mild arm pain and ongoing shortness of breath. Not enough he says to take the nitro. I think he is worried that he is oversensitive to everything right now and doesn’t want to overreact.
Noel goes back to Seattle sometime later tonight as he works tomorrow. Right now we are all just relaxing watching television.
Sunday 11/24/02 9:00 am
It sure is good to have Alec home. He had a quiet afternoon and evening yesterday, watching television and went to bed about 10pm. He slept well and woke up with no real pain – some tightness in his chest which he thinks is the incision healing.
He has the rash again from the angiogram dye but it is not too bad — not itching much. We made sure they knew it had happened last time and they gave him some meds to suppress it. The doctor said he could take benadryl for it if it itches, which he did last night. He also has a little bit of a burn (mild – a slightly reddish skin irritation) in a couple of places on his chest from where they put the paddles to shock-start his heart on Friday. It’s irritating to put the nitroglycerin patch on that, so he has it on his upper arm instead which the nurse said was fine.
Alec is reading the paper, Noel is asleep, and I’m catching up on web-work and email. I’ll make some hummus later which Alec can eat on his new diet, and Noel can as a vegetarian too (garbanzo beans, lemon juice, olive oil, garlic and tahini.) I had soaked the garbanzo beans Wednesday night and cooked them Thursday morning before we went to the intake for cardiac rehab. (Wow, that seems like ages ago now!) We were supposed to host a PFLAG Our House Committee meeting here on Thursday evening and wound up in the emergency room instead, but I left a door unlocked and was able to get hold of the people so they could get in the house, thinking/hoping we would be home before the meeting was over… WRONG! They had the meeting without us, and I never made the hummus.
Noel will probably be here until sometime tomorrow. He has to be back at work on Tuesday.
Saturday 11/23/02 1:33 pm
We are all home! Noel and I got to the hospital at about 9am and it took until after 11:30am to get Alec discharged because they were waiting for two meds he needed this morning. One was a new med that we also have a prescription to fill, and the other was an aspirin. Once we got them, Alec was discharged. He is supposed to see Dr. Wolfe, the cardiologist, in a week or two, and they added the nitroglycerine patch and one other med, but otherwise there are no changes. But he is very glad to be home — as we all are.
So right now Alec and Noel are watching a football game and I am ignoring it. Catherine is coming over to pick me up soon to do some grocery shopping and fill the prescriptions. I haven’t thanked her and she deserves a big one for all she has been doing.
Friday 11/22/02 10:30 pm
Hi everyone. They did the angiogram this morning. They had told us that one possibility is that one of the bypasses was failing and that they might have to put a stent or balloon in it but when they did the angiogram they could see that the three bypasses were fine.
They could tell that a part of Alec’s heart wasn’t getting good blood flow, so they kept looking. They found another 40 % blocked artery and decided to treat this one with meds instead of a balloon or another bypass.
When it was over and Alec was being taken back to his room Dr. Wolfe, the cardiologist came out to tell me all this in the waiting room. And then he said that he wanted me to know that during the angiogram Alec’s heart had stopped, and they had to give him a shock with the paddles (defribulate) to get his heart started again — which it did. The doctor said that this happens about once every year or two during an angiogram and they don’t know why but that it is procedure related and should not impact things now.
It is very scary to know this happened, but the doctor told me in a way that at least I knew Alec was ok and headed to his room first.
Alec was groggy-tired but glad to see me when I got to the room. We talked about what happened — you are awake during the angiogram. Alec said he remembered feeling sort of dizzy at one point and he was about to say something to let them know. Then the next thing he knew two nurses were leaning over him and asking if he was okay. Then he heard Dr. Wolfe say “Well that was unexpected” (or maybe “a surprise” — I can’t remember now.) Alec didn’t know what had happened until they told him.
Later when Dr. Wolfe visited Alec in the room he said he wants to postpone Alec starting Cardiac Rehab for a week or two because of this and wanting him stable on the new meds he will be on. One of them will be a nitroglycerine patch, put on in the morning and taken off at night, and that will be a long term med.
We called Noel after getting Alec settled in the room and Noel had just found out his work was done until Tuesday, so he said he would come home. He got to the hospital this afternoon and will be here probably until Monday sometime.
It was a long day for Alec because he was not allowed to move his right leg or pick up his head off the pillow and had to lie still for 12 hours (which was ten o’clock tonight) That meant his body got sore which was frustrating. Alec was tired, so Catherine and I left for a while to run some errands and let him rest. I went home and brought Alec back my “bucky” pillow which is small thin and filled with buckwheat that cradles and fits under your neck. He found switching from it to the regular pillow from time to time helped.
His bed was tilted so his head was higher than his feet and that was helpful so he could see more than the ceiling, but he needed help eating lunch and dinner since he was not able to really sit up.
His blood pressure has been low and so they are keeping an eye on that and didn’t start the nitro patch today, but plan to in the morning. They are keeping him in the hospital overnight and plan at this point to send him home tomorrow.
The night nurse Steve came before Noel and I left and was talking about what had happened with the angiogram. He said that when Alec’s heart stopped and the doctor had to defribulate him, it was like Alec’s system needed to be re-booted. A little computer terminology I understand all too well and I am SO glad worked this morning on that man of mine!
Noel and I left at about 8:30 and got some dinner and then came home. We will probably get back to the hospital about 8:30 or 9 tomorrow morning.
I am tired but okay — and lucky to have the best support anyone could ask for.
Thursday 11/21/02 2:30 pm
At about noon Louise gave us a ride to and from the hospital so that Alec could get do the intake for cardiac rehab. Then we came home. Alec told me at about 3 pm that he had started having some arm pain similar to the angina before surgery in the car on the way home from the hospital. When he told me he had already taken a nitroglycerine pill and it had not changed the pain.
We called the surgeon’s office and they told us to come in before 4:30. Luckily we were able to get a ride from Karen and we went to the surgeon’s office then to the emergency room where they did some more tests and asked about what he was experiencing.
They decided to admit Alec and keep an eye on him overnight and then he is going to have another angiogram tomorrow probably about 11 am. Yes this is scary. It is possible that the vein graft is failing or something else is going on.
I had called Catherine from the hospital and she called Noel. Karen stayed with us (bless you) and once Alec was settled in his room (1025) she brought me to Catherine’s. I talked to Noel and then Catherine brought me home.
Catherine will bring me back to the hospital in the morning and I don’t know how long I will be there. We just have to see what happens tomorrow, and I will post again when I can.
Tuesday 11/19/02 2:30 pm (but I forgot to post it and its now after 8pm)
I haven’t written anything because there really isn’t anything new to report. Another new nurse came yesterday and she seemed to think that Alec is doing well — and she was impressed with his paintings.
His healing is progressing a little each day — his incisions are healing well (i.e. no more redness), he is doing his exercise walking outside and in the house, and needs almost no meds during the day and still takes two to be able to sleep through the night.
Saturday 11/16/02 11:15 am
Alec is doing pretty well — his cold is still here but almost gone. He’s on the couch reading a book at the moment — did his walk inside the house this morning instead of outside since its raining. He plans to do some writing this weekend for his art column.
He has an appointment for an intake interview for cardiac rehab (monitored exercise) at St. Peter’s hospital on Thursday.
Thursday 11/14/02 5:30 pm
A different home nurse came today and she said Alec’s blood pressure was very low and then she heard some congestion in his chest. She wanted him to get an x-ray to make sure there was not an infection or something. She said we would get a call from the doctor when it was ordered, and we did.
Alec called some of our friends to find a ride and Ramona was able to drive him to the hospital for the x-ray. (Thank you!) When the x-ray was done, they took it to the same physician’s assistant who had seen the incision when there was concern about the redness, and she looked at the x-ray and once again told him he is fine. We won’t complain about that!
Oh and I haven’t mentioned yet that wonderful friends in our PFLAG chapter decided to feed us through this, and so different people bring us dinner a couple of times a week. What a treat! Good food, all different from what we would fix ourselves, and within Alec’s new diet restrictions. Thank you all!
Tuesday 11/12/02 5:30 pm
The home nurse canceled this morning which was not a big deal — there really didn’t seem to be a reason for another visit so soon. Alec saw his cardiologist this afternoon, who said that Alec is doing great — healing well. He told him to start going to the cardiac rehab program, and come back and see him in about 6 months. And he said Alec should see our family doctor about a month from now.
Alec has slept three nights without needing pain meds in the middle, and he is taking much less for pain during the day. This morning he wrote to a friend:
Thank you so much for sending wishes for a speedy recovery. I am recovering quite well. I still tire easily and have some pain from the operation, but I can feel the improvement almost daily. The surgeon said I should be back to normal (actually better than normal) within about six weeks, and I’m beginning to feel like that’s possible.
Monday 11/11/02 3:00 pm
I haven’t had much to report. Alec more often than not now sleeps through the night without waking needing pain meds. His incision looks less red. His cold is going away – it’s much better today than it was yesterday. We have been out walking twice today and he walks in the house too. He cooked breakfast and lunch today for both of us.
Yesterday Alec skipped the PFLAG meeting. I went. Alec had been nominated to be the next chapter president, and he was elected. His term starts in January. He’s skipping the board meeting tonight.
Tomorrow we see nurse Paul in the morning and then the cardiologist in the afternoon.
Saturday 11/9/02 9:00 am
Alec says if it wasn’t for the cold he has developed he thinks he would be able to say he is feeling better. Coughing with a chest incision isn’t fun, but that’s what the cute heart pillow is for, right? He did sleep through the night without needing middle-of-the-night pain meds.
Thank you to so many friends for the support and the visits. We are very lucky to have you all in our lives.
Right now Alec and I are listening to our amazing new CD from Steve Schalchlin and Jim Brochu – the cast album of their powerful new musical – The Big Voice. Thanks to my dear friend Michael I was flown to Los Angeles in October (for my 50th birthday) and I got to see the show which blew me away. Anyone any where near Los Angeles should go see it, and if you are not near but can travel its absolutely worth a trip. Please help spread the word. When it closes in LA, Steve and Jimmy will be looking for venues in other cities.
Friday 11/8/02 2:30 pm
Wow it’s Friday and I haven’t posted anything since Wednesday. Sorry! Noel and Martha have sent emails asking for news about the redness on Alec’s incision and I haven’t posted what happened. First, thank you Gary for taking us to see the doc (actually physician’s assistant) yesterday. She looked at Alec’s incision and asked a couple of questions and told Alec that he is fine and its nothing to worry about. Nurse Paul came this morning and checked him out and was glad to hear that.
Alec realized when he woke up today that he has a touch of a cold and sniffles, and that explains some of why he has been feeling tired and a little achy.
We’ve had a couple of friends stop by to visit today which has been great.
We have no special plans for the weekend until Sunday afternoon when PFLAG meets. We have a ride arranged, and if Alec is up to it he plans to go. He has been nominated to be the chapter president and the election is this month, but there is no pressure on us to be there. If he doesn’t feel up to it, then I probably will go — Alec doesn’t need me here for constant care now.
Wednesday 11/6/02 2:30 pm
Yesterday late afternoon and evening Alec felt tired. We didn’t take a walk outside the house as we had been, but he has been walking inside and doing his deep breathing. Last night he did need pain meds again in the middle of the night.
Nurse Paul came this morning and he is concerned about some redness at the bottom of the long “zipper” incision on Alec’s chest. He wants us to keep an eye on it — he marked Alec’s skin with a red sharpie pen and said to call the doc if it gets to his marks (and left the pen so I can remark if the betadine takes it off.)
He tried to teach Alec to take his own pulse and Alec had a hard time finding it — he would for a second or two then it ‘went away’. Paul got me to do it, and I had a hard time too, but did get it. Paul said Alec’s pulse is a light one and harder to find than some people’s. I was slightly embarrassed because 30 years ago, before I met Alec, I was an LPN nurse. Wow, am I out of practice! Anyway, we are to take his pulse every day now in addition to weight and temperature. We also found out we are supposed to do the betadine stuff twice a day, not four times a day. Otherwise Paul was pleased. He was glad to hear Alec’s lungs are clear and there has been no edema from retaining fluids.
And hey, we didn’t know until this week that there were re-runs of “Hill Street Blues” on during the day. The people who chose get well cards that joked about all the TV watched when recuperating knew! But Alec says at least we haven’t started watching soap operas!
3:10 pm — Nurse Paul just called and said he checked with Doctor Quinton’s physician’s assistant about the redness, and they want to see Alec in the office tomorrow afternoon between 2 and 4pm to look at it. We have a friend coming over at 1pm to bring/watch videos and visit – now I will need to call him and ask if he can drive us for this appointment.
Tuesday 11/5/02 2 pm
Alec slept through the night without needing middle-of-the-night pain meds for the first time since the operation. Actually he didn’t take anything for pain until about an hour ago. Right now he is on the other computer writing an article — the first since he went to the hospital. The other big news is that I found sodium-free baking powder at the food coop, which means Alec can still have corn bread on the diet he is on now.
Monday 11/4/02 10 am
Alec has doctors appointments scheduled now with Doctor Wolfe (the cardiologist who did the angiogram and referred Alec to the surgeon) on Tuesday November 12th at 3pm and then Doctor Quinton (the surgeon) on Tuesday December 10th at 2pm — we go to the hospital an hour before that and Alec gets a chest x-ray so the doc can see how he is healing.
A few words from the impatient patient. (i.e. this is from Alec):
First, thanks, Gabi for taking care of me and keeping everyone posted.
One of the things people keep asking me about is how I knew to see a doctor in the first place. Good question. We all probably have a general idea of what angina feels like, but the only descriptions I’ve heard were “pain in the left arm or chest.” Too many hours at a keyboard can give you that. What I had was a feeling of pressure building up in my arm, like all the vessels wanted to expand but couldn’t. It would gradually build up and then ease off. It wasn’t really what I’d call pain, but it was very uncomfortable.
The anesthesiologist said what I would feel would not be like going to sleep and waking up, but like entering a tunnel and then coming out. I don’t remember any of it. I remember them wheeling me into the operating room, and then nothing else until I came to, which was a moment of sheer horror that — thank God — lasted only a second. It was as if I suddenly saw/felt/remembered them cutting open my chest. It was like being hit in the chest with an ax. I felt that and I saw Gabi and Noel and Catherine hovering over me (I think … maybe I dreamed that), and then I went to sleep. When I woke up again I knew it was all over and I was all right. I was just very, very tired.
It took me a while to realize that I was hooked up to tubes in my chest and tubes in my neck and about a million electrodes. I was the bionic man.
The rest of the hospital stay was pretty good. The nurses were wonderful, and I was never in a lot of pain. The worst was my last night when they put a moaner in the room next door. She keep moaning, “OH God!” and “I just want to sleep!” and I wanted to shout, “Yeah, lady, I’d like to sleep too.”
I was released on the morning of Halloween. The new nurse on the morning shift entered the room in drag. He was a big, tough looking guy named Shelley, dressed out in retro-1960s nurse’s white with a nametag that read “Nurse Ratchet.”
Thanks to everyone for your kind wishes, visits, calls, etc. I wish I had the energy to reply to each of you individually, but I’m not quite there yet.
Sunday 11/3/02 6:00 am
Not really much happened yesterday. Alec is not needing as much pain medication now. During the day he feels better and then at night he needs more meds which the doctors and nurses all said to expect.
In the evening Catherine came over and went shopping with me while Noel and his friend Patty hung out with Alec. My big purchase was a french press for making coffee so we can have Alec’s decaf and my caffeine at the same time. The first day home from the hospital I drank only decaf and wound up with a headache so I am going to do some of both now. When Catherine and I got home they were watching some god-awful-so-bad-it-was-good horror movie from the 40s. I named it “Attack of the Killer Fog”.
Noel goes home to Seattle today, and starts back to work tomorrow. It’s been wonderful having him home. It is any time we get him, but this week it was extra wonderful to have him here.
I won’t post something every day now. It seems a little silly to write over and over when the news is that Alec is doing his walking, napping, and healing well.
Nurse Paul will be here again on Wednesday sometime. Next week we need to call and make an appointment for Alec with his cardiologist for the week after, and then he gets x-rays of his chest before he sees the surgeon two weeks after that.
Saturday 11/2/02 9:40 am
Alec is doing really well. He’s napping or resting now — he got up at 4:30am to take some pain meds (the pain is worse at night) and decided to stay up and make coffee (decaf) and breakfast. But he couldn’t reach the coffee and cereal because he isn’t allowed to reach high. So he took a nap on the couch until I got up at 5:30. I told him he should have waked me, and that today we will move the things he might want down to where he can get to them.
We sorted through the mail (the snail mail) from this week, and he had a couple of things about art that he is going to check to see if he can write articles about for his weekly column in The Volcano which he can do some of from home with seeing things online and email and telephone interviews. He mentioned this morning that he wants to check his email today too.
If anyone local is reading this, I think Alec would enjoy some company this weekend. I would too. Please call first to see if its a good time – i.e. if he is awake. 🙂 And he may not be up for long visits but will say something if he needs to.
Friday 11/1/02 10:00 pm
There is really not too much to say about today which is really nice. The big event of the day was the first visit by Paul, the visiting nurse who came to check up on Alec and was really pleased with how well he is doing. Alec did some walking and some napping and all the usual things he would do at home – except that he didn’t turn on his computer and check his email. He hasn’t needed a lot of pain meds today and he is not trying to tough it out — he just doesn’t hurt as much as he did. Right now he and Noel are watching a basketball game and then I think we are all going to sleep right after I put more betadine on the incisions. I don’t think there is anything special going on tomorrow. love, Gabi
Friday 11/1/02 6:00 am
It’s great having Alec home. We had a fairly quiet afternoon and evening. He walked some in the house for exercise, took some naps, and started reading some of his emails that have come in while he was in the hospital. Then I actually went to bed before he did — he stayed up to watch some TV with Noel. This morning Alec told me that he didn’t sleep all that well (I guess I did) but he took his pain meds at 2 and then was able to get back to sleep again. He is in the shower now, and then I will clean his incisions.
That’s done, and he is fixing us oatmeal for breakfast. We are going to need to write down all the things we are supposed to do and when so we can check it until we have it memorized – weight in the am, temperature in the afternoon, meds in the morning and evening, and the betadine on his incisions four times a day. Pain meds are every four hours as needed, and I had already started a page to write those down so we would remember when he took it.
Noel ran errands yesterday – filling the prescriptions from the hospital and then going to the grocery store. Noel plans to be here until Sunday, then head back to Seattle – he has work on Monday. We have had several wonderful local friends offer to help with transportation for the weeks Alec isn’t supposed to drive, which is wonderful. For those who are old friends of Alec’s who may not know, I don’t drive. Grew up in NY and San Francisco so didn’t learn, then developed a seizure disorder a few years ago, so now I am not allowed to. My sister said I used to be a wus, and now I have an excuse.
Oh we didn’t have many trick-or-treaters last night – only six young children in three groups. But we never get many here.
Alec just read all this for the first time, and didn’t have anything to add or correct. Now he is headed to bed for some rest. In reading it with him I realized that I had thought the heart pillow they gave him was one you blow up, but its not, its stuffed like a regular pillow.
Thursday 10/31/02 1:30 pm
Hi everyone — Alec is home! We got here about an hour ago and after he had some lunch he went to take a nap. He will be doing a lot of sleeping now, but every day we can see him getting stronger. A visiting nurse will be coming by sometime tomorrow and I think that happens twice a week for a while. Doctors appointments are two weeks off and a month off for the surgeon and the cardiologist, with some x-rays to see how he is healing. This afternoon Noel is going to go pick up some groceries and fill the new prescriptions. It sure is wonderful to have Alec home!
Wednesday 10/30/02 10:30 pm
The room Alec is in has more of a view than I realized yesterday. Today with the sky clear instead of hazy, we saw that it faces Mount Rainier, which was beautiful peeking out between and above the trees.
Alec is up walking the halls more, and able to get in and out of bed without help — no easy task since he has to push his heart pillow against his chest and not use his arms to push or pull. He tires easily of course, and is in some pain but meds are helping with that. He had the dressing on his chest incision taken off today and got to take his first shower, then the nurse showed us how to clean the incisions with betadine. We talked to the dietician about changes in what he should eat.
The doctor told Alec this morning that he probably will be able to go home tomorrow. We’ll find out for sure when we go to the hospital in the morning.
If any of you are writing to me and not getting a personal reply, I hope you understand that I am not able to do as much of that as I would like to now but I really appreciate all the support for us. Love, Gabi
Wednesday 10/30/02 6:00 am
Noel and I were at the hospital at 8:30 in time to watch Alec get his first meal. The doctor had already seen him and said he was really doing well. Alec enjoyed the pancakes and decaf coffee etc, and then when they tested his blood sugar it was really high – about 200 I think, but didn’t stay there and that didn’t surprise us because he has known he has a blood sugar problem for several years and has been controlling it with diet.
To get ready for the move to the 9th floor, the nurses had Noel and I go out to the waiting room. They took out most of the tubes – one into his neck, two in his chest, a catheter to his bladder and maybe more. Alec later said the two into his chest were the most painful (yes, he said he yelled). Then the way they do the move to the 9th floor is they have the patient get up and walk out of the unit through the double doors to the hall pushing a little walker with the small oxygen tank on it. Once out that door, they have a wheelchair waiting and Alec rode up in that. He did the walk fine — but it wore him out.
He is in room 903 and it’s a private room with a view. The hospital is surrounded by beautiful trees and we can look out over the tops of them and see sky — which meant some sun in the afternoon.
When lunch came, Alec got up to a chair with some help from his nurse. He said of the food, “It’s not that tasty, but it sure is fun to eat again!” They monitored his blood sugar all day and it did spike some after meals and then go down later. They said the blood sugar going up is one way his body is trying to figure out how to deal with all the trauma from the surgery, and so its not a surprise. They changed his food order to the diabetic diet which will start today.
Alec got up a couple more times to the chair, and the nurse came in to do that giving us all lessons in how he needs to move his body to keep his chest protected.
Some friends stopped by in the late afternoon/early evening and Alec and we all enjoyed seeing them. Then Noel took me out for dinner to get me out of the hospital for an hour, and that was good for me. I went back up to Alec, and Noel went to see his friends for a while which was good for him.
While we had been out, Alec had gotten up and walked the whole way around the hall of the ward with a nurse, and he was back in bed and pleased that he had done it but exhausted. We watched some television and both fell asleep on and off — me in the chair by his bed. Then once he had rested the nurse came in and got him up again and we again did the loop in the hall. (They are going to have him doing that a lot today and up until he is discharged.) He was in some pain then, and he got meds for that. He was feeling better when Noel came back to pick me up at about 9:30 pm. The nurses had told us that if Alec and I wanted, they could bring in a cot for me to sleep in his room. Alec said no he would be fine over the night and he wanted me to go home and get a good nights rest there. So Noel and I left and when I got home I went right to bed and slept until 5 this morning.
We’ll go back at about 9am today and will be there for the day again. They don’t want me to plug the laptop into the phone lines in his room or anywhere I can figure out (I asked about the phones in the main lobby too) so I probably won’t be online again until tonight – depending on when I get home – or in the morning again.
Visiting hours are pretty open on this floor, but they want him to rest for a while after meals, so they said the best times are 11 am, 1pm and 7pm. I think they want visitors other than family out by about 8:30 and they lock the main lobby doors at 9 so then you have to go through the emergency room to leave. If you come to see him and he is not in his room he may be out walking the hall, or they may take him for some tests.
Alec is doing really well with all this. Everyone at the hospital has said his recovery is what they hope for. love, Gabi
Tuesday 10/29/02 5:40 am
I got up at my usual (about 5 am) and called the hospital to see how Alec did last night. The nurse, Nancy, said Alec had a good night – again she said he is a model patient. They have taken out some of the tubes during the night, and he is up in the chair already and going for an x-ray soon. Noel and I are going in about 8:30.
Alec should be able to have visitors once he is moved to the 9th floor, depending on what they have him doing – tests etc. I know he would love to see friends (and we would too) and the nurse where he is now asked me to remind everyone that visitors should not stay too long because Alec will tire easily, and that he may not want to tell people to go, so please do pay attention to that if you come to see him.
The hospital’s regular visiting hours are 11 am to 8:30 pm with no more than two visitors at a time. We don’t know yet what room he will be in when they move him. The number to call to check is (360) 491-9480 — ask about John A. Clayton. His middle name is Alexander, and he has always gone by Alec or Alex as his family spells it.
The hospital’s website is here http://www.providence.org/swsa/default.htm The article linked from there, “Two studies name Providence St. Peter Heart Program among the best in the nation” was one that we saw on a printout in the waiting room while he was having surgery yesterday and it was comforting to know.
I’ll pack the laptop in Noel’s car and when we get there I’ll see if when he gets into his room on the 9th floor if there is a phone line I can plug into to get online and post updates here from time to time. If there isn’t, then I probably won’t do that again until I get home tonight.
Monday 10/28/02 evening
Noel and I are home for the night after two more visits with Alec. He had gotten out of bed into a chair with the help of two or three nurses once while we were gone, but was in bed when we arrived. We spent over an hour with him the first time. He was especially happy when we found his eyeglasses and his hearing aids and got those on him. A friend of ours, Dave, brought a card and a pack of party favor whistles with a note to use them to call the nurses instead of the call button. Catherine came back and then it was time for the nursing shift change and them to do some things with Alec, so Catherine and Noel and I went to get some dinner in the cafeteria and then we went back to see Alec again for about 15 or 20 minutes more before leaving for the night.
Alec is having some pain — especially when he has to cough and deep breathe (to keep from getting pneumonia) and he asked for pain meds tonight, which helped. They gave him a heart pillow — it is a blow up air pillow in the shape of a heart, and he is supposed to use by pushing it against his chest when he is moving to keep his stitches from being disturbed and his arms in. Its got pictures of elk, wolves, bears etc.
He is doing really well. His color is good and he is clearheaded and in a good mood despite the pain. The nurses say he is a model patient and his numbers (vital signs, blood sugar level and other) are all excellent.
Tonight more of his tubes will come out. His surgeon, Dr. Quinton, will see him early in the morning and the plan now is that then they will transfer Alec up to a room on the 9th floor cardiac unit. There he will be up walking more and more, find out about diet changes etc. Noel and I will head back to the hospital about 8 or so in the morning and will probably be there most of the day and evening. I don’t know yet when he can have visitors other than family but that may be tomorrow sometime.
Forgive me for not answering all the individual emails but I will pass on your messages to Alec and we really appreciate all the support. love, Gabi
Monday 10/28/02 afternoon
Hi everyone. Alec had a triple bypass and is in cardiac intensive care now and doing well. I am on a break at home – took about an hour nap and we are headed back to the hospital soon but I wanted to post this quickly for all who are checking here for news.
Alec, Noel, Catherine and I got to the hospital at 5am to check him in and start pre-op. That was until about 7:30 and it was the pre-op nurse, Linda, who was great. There was some concern about a rash Alec had developed Saturday and puffy eyes, which we think may have been a reaction to the dyes of the angiogram. The anesthesiologist was Dr. Doolittle (really). Surgery took about three hours and during that the surgical nurse, Robin, came out once to let us know it was going well. They took him to cardiac intensive care about 10:30 and it was about 11 when they let us see him the first time for just a few minutes. He made eye contact and knew we were there and squeezed Noel’s hand then drifted off to sleep. He had a tube down his mouth then which was out when we went back to see him again a couple of hours later. For the second visit he was much more awake and chatty (still groggy though). He asked us “What does the other guy look like?” and I didn’t understand and he said “The fight I was in” (an old joke). I told him he won the fight. 🙂 Then he was asking when he would be able to eat and I explained to the nurse that he eats about every two hours at home. She said she eats every hour, and to tell him she will eat his now. Alec’s response — tell her thanks a lot. Seriously he won’t get anything but ice chips and iv stuff tonight. But they were going to get him sitting up in a chair this afternoon for a while — start him moving. If all goes okay tonight they will have move him up to the unit on the 9th floor tomorrow morning.
Well I am going to post this and head back to the hospital. THANK YOU ALL FOR YOUR SUPPORT! Love, Gabi
Alec has been having chest pains, so he has been going to doctors and having tests done. Yesterday we spent the day at Saint Peter’s Hospital and they did an angiogram – a heart catheterization. They found serious blockage on a couple of the major arteries going into his heart. So on Monday we will be back at the hospital at 5:15am for Alec to have a double or triple bypass (open heart surgery). The plan right now is that Alec will be in the hospital for about a week or so, and then home. Recovery takes 4-6 weeks during which he won’t be able to go to work or drive. Yes this is scary for Alec and for all of us, but the important thing is that the blocked arteries were discovered before he had a major heart attack so they can do this surgery to prevent that.
Noel was home, drove us to the hospital yesterday and was there with us during the angiogram. He went back to Seattle in the late afternoon for work, and Catherine picked us up when they discharged Alec. Noel will be home again sometime Sunday with all or most of next week off.
I will be at the hospital a lot and may not be able to keep up with answering individual emails to let everyone know how Alec is doing, so I am creating this page that I will do my best to update.
Please keep Alec and us all in your hearts, thoughts and prayers.