Words from a friend of Al's

[annekat]

I have recently been in contact with a friend of Al Swanson's, whom I met at the concert he invited me to, where he was doing the recording. She has been thinking a lot about the last three weeks of his life, and asked me if I would let her share her thoughts and feelings with all of you and fill you in on what she knows about those days leading up to his passing. She would prefer to remain anonymous at this point, but if anyone would like to contact her directly, PM me and I'll send you her email address. And I will share with her whatever responses appear here.

Here are her words:

************************************************** ***********************************************

I am a friend and devoted client of Al Swanson. As a musician, I had the privilege of working with him on many CD projects and live performances for 12 years. I was actually in a recording session with him and 2 other musicians two days before he departed this life. He talked with me a great deal about his illness. I think he felt comfortable talking with me also because he knew I had grown up taking care of my father, who also had an auto immune disease. I was working with Al on two different projects during the months before he passed, and I also know how important the Wegner's Forum group was to him.

In June, he was planning on attending a birders camp sponsored by Cornell for 6 days. He had helped them with microphones to record birds, and it was something he loved. His blood tests showing kidney function had been pretty stable and relatively OK around that time, and he was on a relatively low prednisone dose. He kept himself on a very low sodium diet, and ate quite healthily. He found that this kept his kidneys functioning pretty well, and he only seemed to experience things like edema in his ankles when he was off his low sodium diet (like during the holidays). Before he left for bird camp, he told me that his family had gotten him a "gift" on Fathers day, for a trip to the Bahamas. He said it wasn't necessarily where he might have chosen to go, but what concerned him was that they were going to leave literally the day after he returned from bird camp, and that would mean another 7 days off of his low sodium diet, and also the long plane rides and boat trips are hard on HEALTHY people, but with a suppressed immune system, it seemed risky. I remember asking him if he could "postpone' the Bahamas trip so that he would have more time to recuperate from the bird camp. Since the Bahamas trip was already paid for, I think he chose just to go with the flow...

The day he got back from bird camp, I saw him briefly to get a few CDs that he had prepared for one of our projects. He seemed extremely tired and said how much he hated airplanes! (not the actual flying, but the cramped seats, bad air, bad food, etc). For what it's worth, I had a really bad feeling. I asked him again if maybe he should consider rescheduling the Bahamas trip, and he said he would call his doctor the next day before he left. He told me that he DID call his doctor(the nephrologist) and I don't know what he said to his doctor, or how he framed it, but he said his doctor told him"Oh, it will be good for you to have a vacation". So, that night, he took a red-eye flight with a stop-over to Miami. And went on his vacation. The day after he returned, I had to pick up some more CDs and he was in bad shape. He said the vacation was really fun and relaxing once he was there, but of course he had trouble finding stuff he could eat and controlling his diet. He looked thinner. He said his stomach hurt badly and he couldn't really eat anything but a little fruit. He did not call his doctor for a few days, and finally went in. It surprised me that the doctor(it was his nephrologist) didn't test for anything related to his stomach, and advised him to up the prednisone a whole bunch for 3 days. He was itching a bunch, and couldn't sleep for more than 3 hours at a time. The higher prednisone doses did not help at all, and I can't help thinking that maybe he had some kind of intestinal bug and since prednisone suppresses the immune system, maybe it made things much worse. He continued suffering in this way for 3 weeks, and during that time, he even had catarct surgery for one eye(he had developed cataracts from prednisone, he said!). I was seeing him pretty regularly during this time for some recording sessions he was doing . He was basically exhausted from not sleeping too. He had been able to resume eating some, but he said he always "felt too full" quickly after eating. On July 23rd, I was in an afternoon recording session with him and 2 other musicians, and he told me he was very tired and not feeling well and the next day, he was on life support in the hospital.

I know that going over these details won't bring him back. But he was such a brilliant, investigative person, that I somehow imagine he would approve of my sharing these details with your group. It's possible that he did share some of these things with some individuals. I can't help feeling some anguish over the "what ifs": What if he hadn't gone on two back-to-back trips that involved exhausting plane rides and being away from his special diet? He always talked about what a delicate dance one does with suppressing the immune system so that inflammation doesn't return with a vengeance, and yet when one's immune system is suppressed, one is way more susceptible to infection. I also wish he had had a "team" of doctors with someone "in charge" to evaluate what course of action should have been taken. Surely having cataract surgery added one more stress blow to his already delicate balance.

Thank you for allowing me to share these thoughts and feelings with your members. With sincerity, a Friend of Al's who misses him

************************************************** ***********************************************

[mishb]

Thanks for sharing this Anne and thankyou to Al's friend.
I hope putting this in writing has helped her with her grieving process.

To me though, it still doesn't make sense. I'm sorry if it is wrong of me to write this, but something still doesn't make sense to me.
Al was a fountain of knowledge and with this knowledge he imparted to us the need to be careful, to be vigilant and to always look after number one.
It just doesn't sound like the Al that I know of, to want to go with the flow.....and to, especially, relinquish his diet for such a long period of time. He always seemed so careful/cautious of himself.
I wonder if he knew.......if he knew that this was going to be his final hurrah.

We all still have much to learn with this sucky disease.

I hope you are resting, Al, and are forever.......pain free.

[pberggren1]

Anne, thank you so much for sharing. I am glad that you got to meet Al.

[annekat]

Michelle, I don't think there's anything wrong with you expressing that that thought. All thoughts and impressions are valid. I had the same feeling, reading that, that Al wasn't being as careful as he could have. Perhaps you are right, or perhaps he felt like he was doing OK and could throw caution to the wind a little. I'm glad he had fun on the trip to the Bahamas, but am afraid he picked up something while there that his system couldn't deal with. Who knows what may have been going through his head. Apparently he was not seeing a Wegs specialist, since there aren't any in Washington, though I don't know if he or his doc may have consulted with one at some time. It does seem to be human nature, even among very smart people, to take better care of others than we do of ourselves..... not that I'm suggesting Al didn't take care of himself. I pray for his soul to rest in peace and that his family can heal from this. I hate to think what they must be going through.

[renidrag]

Thanks for sharing
Dale

[drz]

I enjoyed reading the input regarding the friends observations of Al in the weeks preceding his death. I don't see anything unusual about his behavior and can easily see myself behaving in the same manner. We had shared our stories and similar concerns in private messages several times but have no idea of what he was thinking for sure but my thoughts would have been much like this if I was
Al at the time.

I have had good lab results for some time and things seem stable with current meds. I need to work to earn money to support my family so need to push myself a little to do so. Life is not a spectator sport so I need to take a little risk to live the life I still have left. Yes, I am tired from lack of sleep so a relaxing vacation might be best thing for me even though the plane ride down will be tough. The vacation was relaxing but I am still feeling tired but hopefully it will pass soon. When I get caught up a bit I can back off a little and rest up. I will go to hospital if things get worse and get things checked out in more detail. Upset stomach doesn't feel like a flare or like any previous infections and I would not know it was serious until I am in ICU and doing poorly. Then the treatment was unable to help fix things for various reasons.

Balancing life after getting Wegs is tough and I often fail to get it right. It is too easy to err one way of the other and it takes a while to find a balance that sort of works most of the time. Surviving is also a matter of luck too in getting right care at right time and mistakes can easily be fatal. We know we have a higher risk of death from certain things but this can also make us much more appreciative of whatever time we have left to enjoy and to treasure our fun times more.

I think everyone who interacted with Al misses him whether it was face to face or electronically. He taught us all a lot and left a big foot print with his life.

[drz]

More thoughts about Al and his choices:

I found a few quotes from Al in messages he sent me. Unfortunately most have been deleted due to storage limit on site. I wish I had more of his messages and wisdom to re-read now. But these brief quotes I think support my thoughts that Al was a busy and driven man who tried successfully to cram a lot into his life. He had also been through a much tougher and rougher period I think before his diagnosis so the symptoms he had toward his end probably didn't seem that serious by comparison.

I think sharing these thoughts here is part of my grieving process for his loss and the loss of my health. We were diagnosed the same year and had a lot similarities in our cases. I am trying to make some sense and some good out of what happened to him and me. I think some others here can understand and state this better than I. I think Al would want us to try learn whatever we can that is important and helpful to us from his words.

Quotes from Al


Iam doing okay, for the most part, but it bothers me that everythingis so much harder in terms of accomplishment. Complicated things justseem like too much work, and the easy stuff takes far more energythan it should. Sigh. So I try to cram a lot--maybe too much--into acouple of really good hours before things get rough again. As I said:Sigh.

A[/QUOTE]


Youhang tough as well. My current motto: There is much to do before thesun goes down.A[/QUOTE]


Anothersimilarity in our history. Too bad we couldn't get a do over with orhindsight. Boy we could have save a lot of stress and med expenses,right?:biggrin1:[/QUOTE]


QUOTE=Al]Haven'tyet. I've tried to stay busy making a living and all that. Besides,like you, I need to pay more attention to the editing these days.Tomorrow, I am seeing the cataract surgeon--an artifact of theprednisone. But soon....A[/QUOTE]

This was relating our initial dignosis experience:
Thiswas at the end of January, 2010. The result was some dicey kidneynumbers, and both hematuria and proteinuria. By the way, I was nowjust coming off a nasty bronchial infection. Next stop: Nephrology.At our first meeting, Drac (so-named because of the amount of myblood he wanted), pooh-poohed my lung-kidney theory, but ordered abattery of blood and urine tests, and come back in a week. Creatininewas rising, but nothing else tested was amiss. Another round ofincreasingly complex tests, and an ultrasound. Now something clearlyscarey was happening. Creatinine was now starting to spike, and theultrasound was not encouraging--next we still had no diagnosis. OnMarch 4, a Thursday, I had one more round of tests, including one forANCA, though I was told only that it was a rare hemological test. OnFriday night, during a job, I started getting edemas in both ankles.By Saturday, th edemas were very painful--and working that night wasexcruciating. I spent Sunday on the sofa with my feet up, nearlyunable to hobble to the bathroom or bed. Monday morning, Drac called:"Normally, elective kidney biopsies take a few weeks toschedule. I can get you in tomorrow. I advise you to be there.""Can I have until Wednesday in order to clear up some business?"Drac reluctantly agreed; "just show up at 7:00 in the morning."By this time, the edema had subsided just enough that I could walk inon my own--but the creatinine was higher still. What I thought was"just a test" was, as it happened, the start of 12 days inthe hospital. (Morelater)[/QUOTE]

[mishb]

Thankyou Drz,

Al was an extremely busy man and deserved some downtime, as much as the rest of us, and I appreciate you putting it back in to perspective for me.
I think I got so used to him being on here that I didn't think about how busy he was.....he just always seemed to be there.

I myself will be on holidays soon and am trying to think of all the things I will need to make sure that things stay good for me whilst I am away.
Hindsight would be a wonderful thing and unfortunately most people cannot predict what an outcome will be before it's time, therefore, besides taking a full medical team with me, I will also take it one day at a time and enjoy I much needed holiday.

I love that you have kept his replies and appreciate your sharing of them.

Take care

[pberggren1]

You always got Dr. Phil Michelle......lol

[annekat]

Thanks, drz, for sharing your thoughts and some of Al's quotes. I think you are right that Al acted normally; though he may have been tired after getting back from bird camp, that would have been normal, and the thought of a relaxing vacation with no real responsibilities might have been very appealing. Plus he wouldn't have wanted to let his family down by canceling their gift. It's good that he and his wife had some quality time together. I think all of us are capable of seeing things in the best light and not always realizing that we might be endangering ourselves by our actions. I think Al did what he wanted to do and it is just very unfortunate that it turned out the way it did.

[HopeinTN]

I think him about him often and how I miss his wisdom. Thanks so much for sharing.

[mr.g]

Anne...this is Ev, mr.g, from Federal Way. In the discusion about Al, you mentioned there "aren't any Weg specialists in Washington." I am a member of Group Health and my specialists are in Tacoma. I think my Rheumatologist is board certified and a Weg specialist. I will check with her. Anyhow, I pass this information along in the event you are ever interested in a different doctor. I will ask her if her training makes her a specialist with Weg.

Thanks for forwarding the info on Al.
Ev

[annekat]

Anne...this is Ev, mr.g, from Federal Way. In the discusion about Al, you mentioned there "aren't any Weg specialists in Washington." I am a member of Group Health and my specialists are in Tacoma. I think my Rheumatologist is board certified and a Weg specialist. I will check with her. Anyhow, I pass this information along in the event you are ever interested in a different doctor. I will ask her if her training makes her a specialist with Weg.

Thanks for forwarding the info on Al.
Ev

Thanks, Ev. I'd appreciate knowing more about your doctor. However, I don't belong to Group Health, though I suppose I could join. I'm on Medicare and might need to join a Medicare Advantage Plan under Group Health, if there is one. I'll look into it.

The term "Wegs specialist" has come to mean, on this forum, someone who has treated something like 100 or more Wegs patients and is probably listed on the Vasculitis Foundation website as a specialist. However, if one cannot get to see one of those, I can't believe that there are not some others who are capable of treating Wegs. After all, even the specialists had to start somewhere. And any doctor can consult with those considered specialist. In my case, I don't even have a rheumotologist, and if I get one, I'd like it to be someone with at least some Wegs experience and knowledge who is also willing to consult with the more experienced specialists. Al seemed to trust his doctor who is a nephrologist, and I don't know what his Wegs experience is. I don't have kidney problems, so he'd be out for me. But two others besides you have given the names of rheumies they see and trust in the Seattle/Tacoma area. I just haven't gotten around to following through on this. I would very much appreciate if you would mention my case to your doc and see what she would suggest, and also tell her I'm in Olympia. Who knows, there could be someone closer to home than I think. And a trip to Tacoma would be easier for me than one to Seattle.

Thanks, again.

[drz]

I think what was bugging me was the irony of life's mysteries. Al and I had a lot of similarities in our Wegs cases but he had less damage from it, was younger, smarter, more knowledgeable, didn't have the extra burden of diabetes, was stronger, had had a better recovery in that he could still work on a limited basis, and he seemed more vigilant in caring for himself. Yet he succumbed to an infection that probably didn't appear that serious at first. I am still here and doing Weggie good at the moment, so I am not sure what to learn from this or take away except life is precious and uncertain and we need to enjoy it as much as possible. I bet Jack could have shed some wisdom on this if he were here and miss his counsel too. I just watched a great movie with Tom Hanks and Sandra Bullock where it was said "We try to make sense out of what doesn't make sense" so maybe that is the lesson to learn here.

[mr.g]

Hello again. I will email Dr. Warner and ask her for a "list" of Weg specialists in the Olympia area. One good thing about Group Health is the fact I can email any of my 13 specialists and they email back. I will email tonight.


I have to be in Chehalis, my home town, early Wednesday AM. I will pass through Olympia around 8:30. I will buy the coffee if you feel safe enough to meet for a short meeting, not too far off the freeway????

Ev

[renidrag]

I did not think of it at the time of Al's death but I did google him after this thread started. What an amazingly talented and intellectual individual he was. I knew he could write well just from the wording and style of his posts. What we had in our midst was one of the "celebrity types" we needed to carry our flag. Al's obituary is extraordinary and I urge you to read it. I don't know how to download but google his name and it is right there. Also thanks to those of you who sent condolences.
Dale

[annekat]

Hello again. I will email Dr. Warner and ask her for a "list" of Weg specialists in the Olympia area. One good thing about Group Health is the fact I can email any of my 13 specialists and they email back. I will email tonight.


I have to be in Chehalis, my home town, early Wednesday AM. I will pass through Olympia around 8:30. I will buy the coffee if you feel safe enough to meet for a short meeting, not too far off the freeway????

Ev

Thanks, Ev. A list that's mainly Tacoma and Seattle would be fine, too.... there may not be any in Olympia depending on her idea of a suitable specialist. My ENT and pulmy don't seem to think there are any suitable rheumies here.

As for meeting Wed. morn., it is a great idea, but too early for me. It takes me quite a while to get moving in the AM, and then I have to get motivated toward making pottery, which is what I do to supplement my SS disability. I sell it on the weekends at the Olympia Farmers Market. I hope there will be other opportunities for us to meet!

[mr.g]

Here is Dr. Warner's answer. I fear not much help.
Ev

------------------
Everett,

Good to hear from you!
Your friend can find rheumatologist near Olympia or anywhere else.
Its simple.

Go to www.rheumatology.org (http://www.ghc.org/redirector.jhtml?url=http%3A%2F%2Fwww.rheumatology .org) - our professional website and
chose "find a member",
then put state "WA" and any city that you want.

I hope that you will not need that wheelchair soon!

Warm regards,
Natasha Warner, MD.
------------

[annekat]

Here is Dr. Warner's answer. I fear not much help.
Ev

------------------
Everett,

Good to hear from you!
Your friend can find rheumatologist near Olympia or anywhere else.
Its simple.

Go to www.rheumatology.org (http://www.ghc.org/redirector.jhtml?url=http%3A%2F%2Fwww.rheumatology .org) - our professional website and
chose "find a member",
then put state "WA" and any city that you want.

I hope that you will not need that wheelchair soon!

Warm regards,
Natasha Warner, MD.
------------ Thanks, Ev, for trying. I think the consensus on this forum is that there are lots of rheumatologists out there but not many who have any experience or knowledge about Wegs, since they haven't encountered it or been trained in it. Many of them really focus on things like arthritis, which is very common. I've heard through my PCP of one here who told a Wegs patient that he could not help him. Al would have had something to say about this.

[Debbie C]

drz.I believe that from the day we are born our life is planned out and no matter what we do,how well we take care of ourselves,watch what we eat,,whatever the case,when its our turn to go there's nothing we can do to change it.

[Dirty Don]

"life is precious and uncertain and we need to enjoy it as much as possible" -drz

This IS what you learned and it is also the only thing you can be sure of...well spoken...

[delorisdoe]

Thanks for sharing this Anne and thankyou to Al's friend.
I hope putting this in writing has helped her with her grieving process.

To me though, it still doesn't make sense. I'm sorry if it is wrong of me to write this, but something still doesn't make sense to me.
Al was a fountain of knowledge and with this knowledge he imparted to us the need to be careful, to be vigilant and to always look after number one.
It just doesn't sound like the Al that I know of, to want to go with the flow.....and to, especially, relinquish his diet for such a long period of time. He always seemed so careful/cautious of himself.
I wonder if he knew.......if he knew that this was going to be his final hurrah.

We all still have much to learn with this sucky disease.

I hope you are resting, Al, and are forever.......pain free.

From the perspective of someone who was in remission for a long time-7-8 years-I can tell you that I always thought I "knew" wegs and what to expect. I found myself only looking for signs and symptoms I previously had and paying too much attention to those symptoms while ignoring or passing off other ones. I almost died form a blood infection last year because of this way of thinking. I am intelligent and have had wegs for many years but my knowledge of what it is and the symptoms are a curse at times. Al was not ever really in remission but he was doing better and he was very smart and knowledgable but this illness does not follow a path and denial is a strong deterent. I wont try to understand what he was thinking but for sure one thing wegeners has given me is a messed up version of "sick".

[BrianR]

Hi all.

I have not written in quite some time and, rather than create a new thread, I thought best to post here. First off I would like to say how much Leigh's post resonates with me. "Sick" means different things to different people. Perspective is in the eye of the beholder. Many (probably most) of you do not really realize how tough you really are. Life is too short for all of us. Rest in peace Al and Jack. Our time will come too, un-sick and sick alike. Those of us not afflicted with life-threatening diseases usually take life too much for granted. I have not personally met anyone of you except Phil and his family (hi Phil!) and nonetheless have a great deal of respect and love for you all. You are a challenged yet very tough lot. I do not post often at all but I read and keep up. Stay strong all and reach high.

Now I am going to have a Grappa (to Al and Jack) and toast all of you; my FRIENDS!

[pberggren1]

Hi Brian. Hope you guys are doing well. Sneak lots of Grappa while Marta is not around.....lol.

I know with every little symptom now I discuss it with my doc the each week, go for labs, talk with you guys about it, talk with many others about it. Since my second flare in 2007 I have been every more vigilant. Having a good Wegs doc helps tremendously. If he moved far away I would be tempted to go with him.

[drz]

From the perspective of someone who was in remission for a long time-7-8 years-I can tell you that I always thought I "knew" wegs and what to expect. I found myself only looking for signs and symptoms I previously had and paying too much attention to those symptoms while ignoring or passing off other ones. I almost died form a blood infection last year because of this way of thinking. I am intelligent and have had wegs for many years but my knowledge of what it is and the symptoms are a curse at times. Al was not ever really in remission but he was doing better and he was very smart and knowledgable but this illness does not follow a path and denial is a strong deterent. I wont try to understand what he was thinking but for sure one thing wegeners has given me is a messed up version of "sick".

In hindsight is there anything you could have done to minimize this risk from a bad blood infection? Any helpful advice you can share that might help some one avoid such an experience. What were the warning signs you failed to heed?

[annekat]

In hindsight is there anything you could have done to minimize this risk from a bad blood infection? Any helpful advice you can share that might help some one avoid such an experience. What were the warning signs you failed to heed?I'm interested in this, too, since Al died of a blood infection, if I'm not mistaken. So I guess it could happen to any of us. Scary.