Dear Friends, I just read a post on the Acor listserv about Joe Record, who is in critical condition after suffering a heart attack two weeks ago (see below message). I asked permission to post this message on the MMA listserv and here.
My thoughts and best wishes for a speedy recovery are with him and his family.
Margaret
Florence, Italy
P.S. I am very behind on my listserv reading. I will try to catch up!
-----Messaggio originale-----
Per conto di Sherry Shedenhelm
Inviato: domenica 2 settembre 2007 19.07
A: MYELOMA@LISTSERV.ACOR.ORG
Oggetto: [MM] News About Joe Record
Hi Everyone,
I received this email about Joe Record. Because Joe has always been so forthcoming with us about his physical health, I thought he would like you to see this.
I would think well wishes would speed up his recovery, we hope.
Sherry Shedenhelm
___________________________________________________________________
G'day everyone
some of you may know this already, but Joe was admitted to hospital two weeks ago with a cardiac arrest. He was unconscious in Fremantle Hospital ICU for about ten days but has gradually come around. First off just a bit of a blink with the eyes, then more and more facial and head movement. We went to see him yesterday and he was able to look around and respond to our voices, but he can't do much else at the moment. He's got his glasses on now so hopefully he will have a clearer view of what's going on around him.
His sister Clare is there looking after him and he's had lots of friends visit. Many of his friends have never met one another before, but they know of one another through Joe.
We didn't go to see him today as we were both a bit sniffly and he was sedated in preparation for an operation tomorrow. People who have even the slightest chance of being infectious should not visit while he is still in critical condition.
We will keep you informed as we find out more. You might also get more news from his mates Dave, Paul or from Clare.
If you've got any news or wishes for Joe, send them through and we can read them out to him.
Geoff Jagoe & Barb de la Hunty
Mastery Multimedia Pty Ltd
Multimedia and web content production
Sorry, that came out all jumbled. Hope it's legible.
The first is the Acor list members's comment which begins with "Hi everyone." This is followed by Joe's friends' message, which begins "G'day everyone."
Margaret in Italy
Does anyone know of an email address to send good wishes for Joe to?
This unfortunate update was posted this morning on the ACOR list from Joe's cardiologist.
From: Dr Mark Nidorf
Subject: Re: News about Joe Record
Dear All
Thanks for your feed back about Joe. I first heard about Joe some years ago
because he ran with one of my friends - Richard Pestell - so I knew he was
a legend. When I first met him early this year I also learned that he was a
warm, sincere, talented, artistic proud and intelligent man...who was very
sick.
As some of you now know, Joe has Multiple Myeloma and has been on
chemotherapy for some time, but despite his illness he continued to work
hard. I met him in February when he complained of chest pain, but despite
angiography and thallium imaging and cardiac scanning we failed to find a
cause for his symptoms. His lung tests were also clear as was a CT of his
chest.
Joe then re-presented in June with more shortness of breath and at that
time further tests showed that his heart had become enlarged and had
started to fail. Despite the maximal medical therapy he could tolerate, he
could still only walk about 25-50 meters without stopping. For a man who
held records for running this was devastating.
Obviously his prognosis was guarded and I am sure he was aware of his
health issues.
His myeloma meant he was not a candidate for heart transplantation or more
sophisticated forms of cardiac pacing.
His collapse the other day, although in some ways predictable give that he
had an aggressive form of heart failure, was most unfortunate especially as
he is now comatose with little hope of recovery.
My thoughts are with him.
Mark
Lisa, The original email on Acor sent by Sherry said:
If you've got any news or wishes for Joe,
send them through at info@mastery.com.au and we can read them
out to him. Best wishes from Geoff and Barb.
Since now I know quite few mm patients who have died of heart problems, the question to me was what caused an enlarged heart. Apparently, this is not uncommon in runners. I had no idea that long-distance running could cause you to die of an enlarged heart. Also I received an email from a dentist who lives in Perth and says Joe ALWAYS pushed himself too hard, even after he
was diagnosed with mm. I think the lesson here is that we cannot push ourselves too hard when we are sick.
Besides all of that, Joe tried the Budwig protocol and many other things before he used drugs. They were NOT effective. In my opinion, which means nothing, thalidomide had absolutely nothing to do with Joe's heart. If it had been Revlimid or
Velcade..possibly..but Joe went right off Velcade because of his heart problems.
Thalidomide can cause lots of physical problems, like DVT (NOT when not combined with dex), peripheral neuropathy, even tremors but I have never heard of seen that it can be heard on the heart.
Dex can be hard on the heart, but I am not sure, but I do not think it either can cause enlargement of the heart.
Also, the VEGF drugs are not the same as thalidomide, as they are a different class of drugs completely.
So, that is my opinion about all of this.
Thanks.
Alex
a.maas@cox.net
My husband is thinking of eliminating Dex for a while to see how just Thal will work. In this case does he need to continue aspirin, does anyone know? Alex, you suggest here that Thal wihtout Dex is not a DVT risk. Can you point me toward more info?
Thanks, Lisa
Hi Lisa,
My husabnd is on 100 mg daily thal. from maintenance, post trasplant. Both his local onc. and the transplant onc. say he needs to take the 81 mg. of aspirin daily. I asked if that was sufficient, if he shouldn't go back on the low molecular weight heparin (Lovenox) he was on before transplant. They both said that aspirin alone was sufficient for thal alone as DVT prophylaxis.
have a great day,
Patricia D., St. Johns, FL
Lisa-
I supplement with fish oil, broad spectrum enzymes (bromalain) and nattokinase daily- each of these has documented clot prevention- they each have other benefits as well. David
David,
Can you tell if the enzymes have had any effect on the blood clot you've had for so long? Also, have you taken Wobenzyme enzymes? For some reason, I thought you were taking them. If yes, why did you stop?
Thanks.
Cathy
Cathy-
"Can you tell if the enzymes have had any effect on the blood clot you've had for so long? Also, have you taken Wobenzyme enzymes? For some reason, I thought you were taking them. If yes, why did you stop?"
Sorry it has taken a few days to respond- busy weekend.
I have been taking several supplements together to try to reduce my chronic clot as well as prevent new clots, minimize pressure building up, etc. My chronic clot has definately gotten smaller but it is impossible for me to attribute this result to any one of the four supplements that I take each day. Annual ultrasounds measure the clot reduction.
Yes, I take wobenzyme, nattokinase, gingko, fish oil and I make sure that I get 400 mgs of vit E each day (tocopherols as well as tocotrenols). I have switched around to differing broad spectrum enzymes over the years but primarily wobenzyme enzymes.
I don't mean to go over previously covered turf here but as I have posted before, in '99-'00 my pcp put me on coumadin- after about 18 months I asked him to take me off as I had read about long term side effects. All he could say was that coumadin was standard care for chronic blood clots. When I asked about the possibility of coumadin causing bleeding problems from long term use, he only talked about coumadin as the only possible therapy.
Enzymes and nattokinase have documented fibrolytic activity- the ability to dissolve clots. Fish oil, vit e and ginkgo are blood thinners.Â
DavidÂ
Hi all! Just read this message posted by an Acor list member on Joe. Read this and smile! Margaret in Florence, Italy, yippee.
"Hi all,
Just bringing you all up to speed on Joe's progress.
They had kept
him sedated in ICU since Sunday, planning to do a Tracheostomy (opening up a hole in his throat) so they could take the tubes out of his mouth, which were distressing him (and feed them back in through his throat instead). They were going to do this procedure Monday, then delayed it again and again, waiting until his blood had thickened up some more.
So, he was pretty much out of it for the last three days, but he was allowed to come up out of the anaesthesia yesterday, and today I went to see him with his sister Clare, as they said he was awake again.
When Clare and I visited him, we found a dramatic improvement. Far
>from being comatose, he is able to nod or shake his
head slightly in
response to questions, is showing signs of being able to cough, and was trying to speak, although the tubes wouldn't allow him to use his voice. Joe is starting to communicate again...
The best of all - we got him to grin in response to some of the things we said! There is no question that it's still Joe in there, and his responses show that he's still thinking and responding and capable of laughing in spite of it all.
The ICU staff are so pleased with his progress, that tomorrow, if Joe can prove that he can cough on command, they will take the tubes out of his mouth, not do the Tracheostomy and let him start functioning for himself. When I said to Joe that this meant he would be able to tell us what he thinks of what's going on and tell us what he wants, he nodded strongly. I think he will have a lot to say...
So, remarkable progress, and the ICU head of staff is saying there's a real prospect of him getting to leave the ward. This is an amazing feat, given that they only gave him 2 days to live 17 days ago.
Keep your spirits up, folks, we've got him back part-way so far. We may get him all the way back to us yet!
Barb"
I was about to post the very same message. I'm sure we are all tremendously relieved to hear the news!
Another update for Joe. If you know him (virtually, too), please send him a message. Funny ones are good, as you can read below. Margaret, Florence, Italy. "
Hi all,
Joe's Progress as of Sunday 9th Sept.
Joe had a Trachaeostomy on Friday afternoon, which he has tolerated well. He now has a nasogastric tube for his nutrition, and gets his air though the tube in his throat, but he is doing most of his breathing for himself. During the day, the ICU staff sometimes disconnect the air apparatus and let him breathe for a while for himself. His mouth is now clear of all tubes, which is a great blessing and clearly he feels better with this new arrangement. He is cooperating with the physios and making great strides in improving his lung function, though his arm and leg strength will take a long time to return.
Joe is not yet speaking, but he is communicating very clearly - weak but decisive nods and head shakes.
He is now also spending some time upright in a special hospital chair during the day.
They moved him into his own room on Thursday (possibly to give more room to his constant flow of friends). Clare is arranging (at Joe's
request) to bring one of Joe's big paintings down to the hospital to bring more life into his room.
I had hoped that he might be speaking by today, but he's still only using nods and head shakes and closing his eyes firmly to communicate. Nevertheless, there's no question that it's Joe in there and he understands and responds just as we expect of "Our Joseph".
When I saw Joe on Thursday he was quite alert and awake, but looking sad - we had Joe back with us but he was not very happy with his situation, and that was very painful to watch, and it was hard to cheer Joe up when he and I both knew this was not a good scene to be in. It was good to see him so aware and alert after having been away for so long, but not good to see him slip into sad repose when his attention drifted from the conversation.
Today, he was fairly tired when we visited him late in the evening, but he was clearly pleased to see us, and generally looked pretty happy and a lot more at ease, though he tended to doze off from time to time. It was great to see him without all those hoses strapped into his mouth and he looked so much more relaxed and comfortable.
So: there are still no promises as to long-term recovery, but he is definitely better and happier every day. We read him your emails, and he nods to show he recognises the names, and manages a grin when they tickle his sense of humour. Your support is important to him.
Hang in there. Anyone who is able to visit is welcome. He's not in great shape, but he is very defiantly beating the odds, and you can definitely have a conversation with him if you are patient.
Barb
--
Geoff Jagoe & Barb de la Hunty
Mastery Multimedia Pty Ltd
Multimedia and web content production
Phone: 08 9364 2134
web: http://www.mastery.com.au"
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