Tag Archives: skin graft

Ann’s Update: 18 Jan 2011

Dear Friends Everywhere,

Wonderful news!  The skin graft, which has been considered almost surely a success, but with a couple of questionable places that were being carefully watched, is now officially a complete success!  We can see the new skin clearly, and the nurse who comes three times a week to change the dressing said, “It’s time to be happy!  The graft is perfect!”

There is still the small ulcer on the heel, but that is considered the result of pressure over a long period of time in bed, and it is looking a bit better.  Sasha is being taken on short walks with the walker (and with a caregiver by his side) every hour, and we are trying to get him to remember to walk only on the ball of the left foot, not on the heel.  And whenever he sits down for a while, his left leg is lifted on pillows so that the heel hangs in the air, without any pressure of any kind.  The heel is the source of considerable pain, whenever it is touched, and we hope it’s going to clear up soon.  Sasha’s other source of pain, which might or might not clear up in time (weeks? months? years?) is his peripheral neuropathy, together with (says our doctor) pain caused by regeneration of damaged nerves.  We aren’t sure what causes the needle-strike pains which hit him usually in the mornings and always in the late evenings, but if it’s nerve regeneration it would theoretically fade away when the nerves recovered.  If it’s the neuropathy, he’ll probably have it the rest of his life, which means he’ll have to be on pain meds, which means he won’t be able to drink red wine again, which is a dreadful thought.  We do give him a glass of Fre wine, which is non-alcoholic, whenever a guest comes to dinner and brings a bottle of red wine.  He’s put up with that for quite a while, and there are times when I think he forgets it isn’t the genuine stuff.

Inevitable question from one of you:  How could Sasha not know that non-alcoholic “wine” is not real red wine?  Answer:  aside from the mental state (the “d” word), he lost all sense of smell several years ago, which is something that can happen to chemists when they are elderly, simply as a result of having been exposed to too many chemicals over too many years. It’s quite common among serious chemists when they’re over 75 or so.  And loss of smell means alteration of the tasting ability.

Again, I send my fervent thanks to all of you who have donated anything from fifty cents to thousands of dollars to help us with the cost of 24-hour home care.  Without your help, we would be forced to entertain thoughts of nursing homes or places like it, which would be really dreadful for a man like Sasha, whose mind is still bright and creative (some days are better than others), despite the memory loss.  As soon as he can walk as far as the lab, he’ll be back out there and truly happy, but he will still need a caregiver close by.

So thank you all again, with all my heart.

Blessings — Ann

Ann’s Update: 15 Jan 2011

Dear Everyone,

Sasha is doing well, and would be doing even better if it weren’t for a “blister” on his left heel.  You could call it the possible beginning of another ulcer, but we don’t want to go there.  The doctors and nurses call it a pressure blister, and we’re trying to get him to remember, every time he gets up to walk a bit (he’s supposed to do that about every hour — with a helper beside him) to walk on the ball of  his foot and not the heel.  It’s not too hard for him to get the message, since the heel hurts severely every time it’s touched.  It’s tempting to think things like, “Why is there always some new ulcer or skin breakdown; why doesn’t all of it go away, now that the skin graft is  successful?”  But the fact is, he’ s still got the peripheral neuropathy, and probably always will have.  Which means, it’s going to be hard to get him completely off pain meds, because there’s always some nerve twanging away, especially at night.  The only reason — for me — to want him off pain meds is that only then can he have red wine again — even just a single glass.  And that is, or was, his favorite drug, his drug of choice, and I hate to see him go through the rest of his years without enjoying it again.  We’ll figure something out.

Since coming home, my impression is that Sasha has had somewhat less “sundowning” than before. Maybe I’m just imagining it.  He certainly does have evenings when reality is definitely — ah — altered. Not a good trip, either; it’s usually associated with some anxiety, such as trying over and over to treat his small television monitor like a computer, and wondering why he can’t find the mouse OR the keyboard.  But I’ve noticed that there are now some evenings without sundowning, or at least with a minimal amount of it.  There’s no question that being home is better than being in hospital, for anyone, but particularly people with mild dementia.  They need familiar faces and things around them, and any place not-home is disorienting.  He goes to the doctor without trouble, because he’s with familiar, loving faces, people who know what’s going on, and he knows he doesn’t have to decide anything or fix anything or do anything worrisome.  And the visit to the doctor’s office is relatively short.  Before you know it, he’s headed home again.

This leads me to thoughts of Burning Man and other places in the world that I’d enjoy seeing again (or, in the case of Burning Man, enduring/surviving again).  If someone offered to lend us a nice-sized RV and pay our way to BM, I would be tempted to say Yes!  Yes!  (and Thank You, of course), but then I would have to sit down and do some thinking.  We couldn’t do it without a care-giver, of course, because Sasha can’t be left alone.  And even the most devoted care-giver would need time off.  Okay, then, two care-givers.  Since they would be together in the RV, they would have to like each other and get along very well.  (Maybe we change the description of the RV from nice-sized to HUGE! )  Could I be the second care-giver?  Yes, I could.  But my months of being just that, last year, taught me how exhausted I can get in a rather short time.  Not only am I no longer young, I have a very bad back.  I also need ten hours of sleep, while Sasha needs about six hours.

What about the many wonderful volunteers who have offered to help take care of Sasha now and then?  Well, that sounds great, but my man needs — as I said before — familiar faces around him, especially at times when intimacy is unavoidable (peeing, etc.).  Above all, there is the possibility of something physical going wrong, like another stroke, when medical treatment is vital within the first few hours, to prevent disaster or death.  Burning Man is not the place to take that kind of chance.

(Sigh.)  Well, we don’t know how things will develop within the next months or years.  Sasha’s body has always been amazingly strong, and his mind has been one of the world’s best.  Maybe ——- maybe.  We’ll see.

This has been a lot of speculation, but that’s what came out today, and that’s what I shared with you.

I’ll tell you more about what’s going on within the next few days.  The weather in the Bay Area is predicted to be dry and sunny and a bit less cold for the next week, so enjoy the sunlight and have a lovely weekend.

Love and Blessings to all of you — Ann

Ann’s Update: 12 Jan 2011

Dear Friends, Romans, Countrymen, Lend me your Ears,

We drove Sasha to the surgeons, Dr. Parrett and Dr. Safa, both excellent, skillful, indeed — vastly superior —  vascular surgeons who did the job of saving his left foot.  They examined and admired, then carefully re-wrapped the lovely skin-graft.  Then they said the magic words, “It’s time for Sasha to put some weight on his foot and begin walking, just a few minutes several times a day,” and we began smiling.  They told us to return in two weeks, at which time they would “ratchet up the activity.”  Later, when we were home again, I phoned Dr. Abramson (“Dr. Paul”) and asked how long I should continue giving Sasha the heparin shots, and he said that as soon as he began walking, he wouldn’t need the heparin to prevent clots from forming.  That was good news.  I’ve managed to learn how to give a shot smoothly and without more than a smidget of anxiety, but I’m very happy to give it up, too.

Sasha still has needle-strike pains, now and then, sometimes in both left and right feet, but usually in the left one, and he may need pain meds for quite a while.  If the pain is due to nerve regeneration, there will come a time when the needles will disappear; if due to peripheral neuropathy (as I think I already described), they may be permanent.  We’re hoping for the former, but if it’s the latter, there’s hope that the attacks will come less frequently.  But right now, we’re so happy about the saving of his foot, we’re not going to worry about anything else.  For 24 hours, at least.

I’ll write more tomorrow, if I can; otherwise, I’ll be back with you Thursday.  In the meantime, I send my thanks and deepest gratitude to those dear hearts who have contributed money, both small amounts and very large, all of them received with feelings of something close to awe.  I know that Sasha has contributed to the happiness and increased richness of many lives, but it still seems incredible that so many of you are sending help — in the form of money — as well as expressions of love.  We are determined to care for him at home, no matter how far the so-called dementia may go.  Right now, his chemical knowledge is still mostly intact, just as his musical memory is.  He’ll be walking to the lab within a week or two, at the most, and he’ll be back in the world he loves, with the help of Paul Daley.  We will continue giving him round-the-clock care as long as we can afford it, and we’ll continue raising funds every way we can so that we’ll be able to afford it.  I’m very optimistic, and that’s due entirely to all of you and your responses to our call for help.  Tania and Greg have been steadfast friends, giving of themselves and their energy for years to both Sasha and me.  Without them, I would be in hospital or in a state of complete breakdown (I admit I’m not really 39 years old, although that news may shock you deeply), and I just don’t have the energy to do all the things that Tania does for us without complaint.  And our caregivers have become affectionate friends as well as paid helpers.  That’s why I think of us — Sasha and me — as really blessed.

Thank you again, and much love — and talk to you tomorrow or Thursday…

Ann

Ann’s Update: 11 Jan 2011

Dear Everyone,

Now, this will be really short, because tomorrow is the big day, and it makes more sense to talk to you after Sasha’s foot gets examined by the two surgeons who did the skin-graft.  What we hope is that they will look at the beautiful graft and admire it (and themselves, justifiably), and declare that, instead of continuing with the effort to keep Sasha’s left foot off the floor, and without any pressure on it, the whole picture for the future will be the reverse: Keep the left foot ON the floor, begin a bit of walking, then walk more, then walk normally, then walk to the lab!!! Of course, the surgeons won’t know about the beloved lab, so they won’t say anything about it, but the rest of us know, oh yes, we do!!!!!!!!!

And all our spirits will rise, most of all Sasha’s.  Finally.  After a whole year, for Pete’s sake.

And I can stop giving him shots of heparin.  I’ve never given shots before, and my hand still shakes a tiny bit now and then, but I’m getting really good at it.  And Sasha, bless his beautiful soul, utters not a squeak when I plunge the very fine needle into his tummy area.  Now that I can do it so well, I’m ready to relinquish the privilege.  ASAP.

Talk to you tomorrow.  Wish us luck.

Love and Blessings to all of you —- Ann (& Sasha)

Ann’s Update: 3 Jan 2011

Dear Friends,

Finally, we have the really great news we’ve been waiting for!  Sasha’s left foot has been encased in a wound vac. for five days, and yesterday, on the fifth day, the vascular surgeon, a terrific man named Dr. Parrett, took the vacuum off and examined the graft site.  He said it had taken, hooray and Amen.  Until now, we had not been able to dismiss completely the possibility of amputation, but this tells us that (at least, for the foreseeable future), the foot will remain with the rest of Sasha’s bod.  And, thank heaven, Sasha can come home on Wednesday!

This particular hospital experience has not been without problems.  We never did get a private room, due to the patient overload, but for the most part, the other room-mates have been nice people, so that isn’t a complaint. The nurses are mostly very nice and pleasant and helpful, with a few inevitable exceptions, who made things a bit difficult for our caregivers, probably not realizing that we have a really good relationship with our three caregivers and that they tell us everything that goes on when we aren’t there.  Including what certain nurses say about a lot of things in our absence that they did not — and would not — say when we’re there.  A lot of funny stuff, nit-picky stuff, goes on in hospitals as it does everywhere else, but small things get magnified in the minds of patients and their families, because we’re all helpless without good nurses, and there’s a lot of anxiety running around inside us when someone we love is sick and we can’t make them well by ourselves.

All of this rescuing of Sasha’s foot would not have happened without our new primary care physician (also known as the “family doctor”), who knew the right surgeons to send us to, and spends more time with us every time he visits than any other doctor I’ve ever known.  Not fifteen minutes, but usually a full hour!  He was introduced to us by a dear friend, an addiction and pain specialist named Howard (I’ll write his full name when he gives me permission), when our long-time family doctor left to open a clinic in New Orleans.  This new doctor, Paul Abramson, is a member of The Tribe, and living proof that the universe is occasionally kind and compassionate, despite what might be described as overwhelming evidence to the contrary.  The only negative (which we are going to accept willingly) is that his office is in San Francisco, a near-hour’s drive from our home. Dr. Paul has empathy, intelligence, humor, and loves challenges.  And Sasha’s foot has been quite a challenge, witness the fact that the doctors in the Wound Care Center, where we took Sasha for many months, simply did not see the point of trying to avoid amputation, and thought we were wasting time and money in trying to keep his body intact. A certain lack of imagination, one might say.  They are good doctors, but imaginative they are not.  So I’m saying here, in front of God and all the Little Gods, that we are immensely grateful to Dr. Howard, who led us to Dr. Paul, who led us to Dr. Parrett, who led us to a successful skin graft.

Now, we are going to have to raise enough money to pay for round-the-clock caregivers for Sasha, for what may be years, since that magnificent mind has lost its ability to remember anything that didn’t happen many years ago.  Arteriosclerosis, hardening of the arteries, is the cause, and the only bright spot in this rather sad picture is that Sasha’s true personality — optimistic, pun-loving, people-loving and chemistry-loving — is intact and shining brightly (unless he’s in pain, and we hope that will be an infrequent problem from here on), and when he moves back to the lab, with Paul, our chemist friend and Sasha’s co-author on the Shulgin Index, he’ll be happy again, because he still remembers most of his chemistry, and we hope that will continue for a long, long time.

And the Shulgin Index is off to the printer, thanks mainly to Wendy, my wonderful daughter, who said (something like), “No more!  No more!  It’s finished.  We are sending it out into the big, wide world NOW!”  At which point all the exhausted co-authors (Paul Daley and Tania Manning) cried out in unison (sort of): “Free At Last!  Free At Last!  Thank Wendy Awlmighty, Free At Last!”

Love and Blessings —   Ann