Tuesday, 20 April 2010
Hi Folks !
Sorry this update has been so long in coming! The past two weeks seem to have flown by! I continue to make progress but it seems to me it seems to have slowed somewhat. Those that have seen me say the opposite - my walking has improved and I seem to get around alot on my own - so maybe its a case of them seeing snapshots and me seeing a movie! I do know that I still deal with foot and hand pain on a regular basis - for which medication is a welcome and necessary relief. Norco - is a mix of Hydrocodone and Tylenol and I judge "pain days" by how many norco's I need to take - usually between 3 and 5.
The Great thing about being at my brothers besides the great company, family and food - is the great facility he his house provides for rehab. There is a full up round gym here, a full swimming pool (Iam guessing about 25 meters) and sprawling grass lawns that meander up and down and around - perfect for walking that challenges my balance without the risk of a crash and burn fall!.
Of course the downside - is I really miss home and being around my friends and family. Last weekend I had a real treat - My girls came down and visited me!
MAGGIE, KATIE AND MOI!
Mom came too and we celebrated her birthday. The girls arrived Saturday afternoon. Richie was going to come but he had a head cold with lots of coughing going - something Iam not supposed to be around with my compromised immune system - so reluctantly I waved him off. So it was sad not seeing him, but great seeing Mom and the girls on Grammas birthday!
HAPPY BIRTHDAY MA!!
Saturday Mom, Kathy and I took a stroll around the Palisades. We wound up in the local bookstore and somehow found the Baskin and Robbins.
VIDEO: STROLL THROUGH THE PALISADES
http://www.youtube.com/watch?v=uXBre6-Hipo
I tried to pass it up - unsuccessfuly!
VIDEO: EATING ICE CREAM IN THE PALISADES 1 & 2
http://www.youtube.com/watch?v=LbognSnVbxc
http://www.youtube.com/watch?v=2KP2-9MxwYA
On Sunday we were visited by my niece Lizzy who lives down in the LA area - she had only just heard about my being sick and called to see how I was - when she heard I was in town and the girls were going to be here she drove up drove up to see us - so it was a happy visit with "Uncle Jim and the cuzz's" 3 years ago - when the kids and I went on our England / Scotland adventure - Lizzy came with us - so there was alot of fun reminiscing. We went to Santa Monica, and had lunch at California Pizza Kitchen and took a short stroll around the Promenade.
VIDEO: SANTA MONICA WITH THE GIRLS
http://www.youtube.com/watch?v=5dnqF3cfAs0
Last week - I started physical therapy. My trainer - Dave is great - super experienced guy who has treated people with demyleonating diseses before. Right now he is focusing on balance. I figured balance would just come back as I started being able to do more and more things - but I was wrong. It's amazing how you can literally forget how to do the most basic things. And because my feet are going to be the last thing to regain their feeling - all of those unconscious muscle movements that automatically happen in response to small changes in weight shifting and pressure - those don't occur - and if you're not paying attention - you don't realize what's happening until you are already in need of a gross correction. So the key is to think about what you are doing all the time when you are standing.
I've also experienced "Rolfing" If you've never been "rolfed" I highly recommend it with some caveats. It's basically super strong deep tissue massage - the goal being to break up facia and connective tissue and re-shape it and move it so that it better works with your natural muscular skeletor habitus. If you would guess that this is a little on the painful side - you would be correct. There are times where you swear you're being pulled apart - and you're gritting your teeth in pain - and the rolfer is saying - "now, just relax your shoulder" I have no idea how he does it for an hour and half straight.
This past weekend we flew up to Johns house in Mammoth Lakes CA. John and his daughter Stephanie went skiing both days. Still a ton of snow everywhere. I went for a walk up the hill - just to see how far I could make it. It wasnt far - maybe 1/2 mile - but hey! - that's a pretty big improvement over 1-2 steps - and at 8500'! I used the walking sticks of course - but used them mainly to keep me stable when I was going down hill.
OK - If you made it this far without falling asleep you have tremendous energy or are amped up on coffee or espresso. So I'll go ahead and post this - and I PROMISE - you won't have to wait nearly so long for the next one. I plan to get back in to the every 3-5 day posting rhythem.
Thanks so much to everyone for your continued to support. It's so good to know that you are out there - really good keeps my spirits high!
Talk to you all very soon!
Jim
Posted by me
at 12:49 AM CDT
Updated: Tuesday, 20 April 2010 1:48 AM CDT
Sunday, 4 April 2010
HAPPY EASTER!!!
Hi Folks!
Sorry its been so long since my last update. Some of you are probably wondering what the heck happened to me. Well - Iam still alive and kickin' just in a different location!
When we last spoke all I had left were a few lab tests and a final visit with Dr. Burt. All the lab results went well - White cell count right in the middle of normal - and liver enzymes coming back towards normal range - apparantly they had been spiked up by all the meds in the hospital.
VIDEO - SPRING TIME ZIPPY RIDE TO HOSPITAL FOR LAST TIME
http://www.youtube.com/watch?v=mbS3f3zH-sU
I had an endless list of questions for Dr Burt for our Wed meeting - but it was over before I got more than a couple out. Doc Burt isn't much of a talker - So you learn to consolidate. He shook my hand - told me I had done great - that aside from the RSV virus everything had gone textbook and to see him in 6 months!. I asked him about the pain I was experiencing in my hands, feet and chest, and he said that it will go away - but sensory nerves are more gradual (I made sure he renewed my pain med prescription) I asked him if there was any reason for me to hang out there - to be close by just in case anything were to happen. He said no need - just go back, and be careful and use common sense. Of course, I will be getting weekly labs in CA that will be faxed to them so if anything starts getting out of kilter they can be on it.
So - after that I made my final Journey back to the Ritz - last ride in the "Zippy" - Gonna miss that thing! Everyone jumps out of your way when you're driving it! Cars, Pedestrians - even animals! lol
Sophie had already done much of the packing so we had time to relax and visit one last time with Margarita. My brother John finally arrived about 5pm and with the help of several bell captains we were able squish everything into the back of an Expedition. As we drove off - there was a mix of feelings. When we arrived there back in Jan - everything was dark and cold. I was in a precipitous decline, everyday brought loss of more function and more despair. While just a room (actually a 2 bdrm suite) - this place functioned as a "Hope Central". A place of comfort in a storm, a war room where strategy was developed and of course a place to share great food and laughs and relieve the mind of challenges facing it. So now, leaving - with the flowers all in bloom, the tempreture almost 80 degrees (even at 6pm) birds chirping - everywhere spring and renewal - There was a certain symetery about it all. Staying here longer wasn't nesessary. It was change - but the sort of change that feels more like a college graduation, some sadness - but lots of hope and optimism about the future. Time to move on!
LEAVING THE RITZ And so we did! We got Airborne around 7pm - and arrived in the Bay Area about 9:00pm local. How can one say goodbye to Alice and Sophie? You can't and don't because this experience has forever fused our lives together - So it was not "goodbye" but "See ya later, Aligator" - and undoubtedly we will. I will forever be grateful for the gifts of faith, hope and courage that they gave me. Both of them are remarkable human beings!
VIDEO - DEPARTING CHICAGO - NOTE ALICE IN COCKPIT
http://www.youtube.com/watch?v=J_4UnUzK20Q
Mom joined us in Oakland and off to LA we went. (Santa Monica specifically) We got to my brothers house late - close to midnight. I was very tired and in a great deal of pain. All day long I had been watching the clock timing down the minutes to when I could take my next "Norco" (pain killer). Its usually worse at night and on this night - I gave in doubled up on the last leg into LA - even this was scant relief.
My brothers home is exceptionally comfortable - but it is still a change. The biggest change of course is size. The other big change of course is no Zippy. This of course forced some changes. How to get around specifically! There was a standard wheel chair - but I refused that. The walker is good but on the first day - my distance was limited by the foot pain. The third big change was stairs. I haven't walked up or down stairs in 3 months, and I was amazed at how much strength I had lost. Literally planting the foot down onto a step and pushing the body weight up required a 70-80% maximal effort. 2-3 stairs is about all I could do that first day.
VIDEO - 1ST DAY BACK!
http://www.youtube.com/watch?v=z81Xi9LnuQo
Iam going to fast forward here for your sake and mine.
It's been 4 days - and things have changed substantially! First the pain has decreased substantially - allowing me to move. Movement begets movement and working out. I have to fight desire to push it with the Doc's common sense of not over-overdoing. I was so excited about all the opportunity here to work out (gym, pool, aerobics, stairs, etc) that on Friday I way overdid it. Paid the price on Saturday - chilled yesterday and think I got it about right today.
So today was a very good day! A balanced work out, relaxation with family and time to reflect on all the support and blessings received over these past nine month! Who could ask for a better Easter Sunday. I wish everyone out there the very best - and peace and happiness!
VIDEO - TODAY - EASTER WALK !
http://www.youtube.com/watch?v=6UPqNCdm5mE
`
EASTER DINNER also tribute to the ONE month Birthday of my new baby Immune System! - (Note Pinata over table)
Posted by me
at 11:28 PM CDT
Updated: Monday, 5 April 2010 4:59 PM CDT
Sunday, 28 March 2010
SUNDAY CELEBRATIONS!
Hi Folks!
My first attempt back at typing - still shakey - so pardon if I only write a little bit!
Were having a bit of a celebratory Sunday here today! Iam feeling pretty good today - all things considered! - I decided 2 days ago at 10am on the 26th - that I just wasnt going to go any lower pain wise and that from then on out the trend was going to be up! - So it is written - so it will be done!
Alice started the festivities by offering to make me a "shake". Those of you who followed the blog early on might remember the trauma induced by the Tumaric Root shake a few weeks back - so I was a little tentative - but Alice said she would make it good and OMG - it was - I don't know what was in it - but it was down in about 2 minutes! Take a look at this tastiness!
CHEERS!!!!
After that - Alice and Sophie visited friends at the hospital - I stayed back and caught up on some reading. During the hour that they were gone - Little Lucy - the cutest little brown fluff ball poodle - who normally is scared to death of me actually got came up to the sofa where I was laying and started pawing like she wanted me to pick her up - when I reached for her she skiddadled - but I think she is actually beginning to warm up to me!
Shortly after Alice and Sophie returned - we had a big surprise! Margarita came by on her day off to bring me Pinata!
OUR SWEETHEART - MARGARITA!!
We had talked about her visiting San Francisco - in August around my birthday and having a piniata party - but this early visit was very sweet and touching! I guess were celebrating new baby immune system - or just celebrating in general!
*****VIDEO - MARGARITA SURPRISE VISIT ***
http://www.youtube.com/watch?v=XzwTibEz7YA
She is such a sweet person! Her family was waiting in the car so it was only a brief visit - but Alice and Sophie got to meet her son!
***** VIDEO - JIM CELEBRATION WALK *********
http://www.youtube.com/watch?v=hxOO40pcOLw
Then Alice's friend Valentina came by - her and Sophie went swimming - and after they return we are all going to have a pasta dinner!
So over all its a pretty festive day!!
I feel like Iam making very slow continuing strides. Sometimes up sometimes back a little - but overall forward! So watch out - I may sneak up behind ya!
Tomorrow I have a doctors appointment with a liver guy - who will hopefully give me good news regarding liver enzymes - and that the flare up was temprorary and the that good trend is continuing. Then I see Dr Burt for a final visit on Wednesday and after that I am cleared to leave Chicago and go back home. I going to make a final decision on leaving tomorrow. Barring any complications I will probably fly back to CA on Wednesday - just hard right now to contemplate leaving the safety net of the Ritz and all the support that is only two blocks away. Either way Alice and Sophie will be leaving on Wednesday - so if I stay I may have Mom or the kids come out. If need be Iam sure I could hang here a few days by myself.
OK folks - fingers are splayed - Promise I'll be more entertaining next time - hope you enjoy the videos!
Posted by me
at 4:10 PM CDT
Updated: Sunday, 28 March 2010 4:44 PM CDT
Saturday, 27 March 2010
***** VIDEO MSG FROM JIM *****
http://www.youtube.com/watch?v=W7tJXfDVL6o
Posted by me
at 5:44 PM CDT
Updated: Saturday, 27 March 2010 5:47 PM CDT
Friday, 26 March 2010
healing pains
jim is so close to doing his own blog entries - very soon you'll get jim's multimedia entries back !
today he feels tired though - he went to have bloodwork done this morning and is now resting in bed..
yesterday's blood work showed high liver enzymes, so dr burt asked jim to go see an infectuous diseases doctor - he told him not to worry, they just want to catch anything early...
last night the liver enzyme figures were down, and we're hoping that today's blood work will be better.
now it's normal, after this procedure, to have heightened liver enzymes (just from the chemo), but if they're too high, they get worried that one of the meds may be too harsh on the liver and/or that there may be a lurking virus... so they want everything checked quickly.
jim was holding off on taking pain meds this morning - to not affect the liver enzyme readings - so he sat though hours of level 7/8 pain - needless to say alice and i were not happy with that !
thank god he finally took some -
managing pain is such a big part of this illness, and the sooner you take a pain med, the better - you want to nip it in the bud
healing unfortunately has its pains - as the nerves reawaken - as the dead tissue reawakens, it reawakens pains.
otherwise, jim has been only using his wheelchair to go out - and his walker here... which is great - the jazzy select is great fun, but it won't get the muscles back ! so jim knows to walk as much as he can, and he's actually stable enough to walk down the hall, around the floor..
he actually was awake at 2am and took a walk down the hall !
alice saw the neurologist yesterday who told her that it's important not to exercise to the point of pain (dr burt had also said no to use the "no pain no gain" motto) - she said it's important to listen to the body and help it along its way, not to let muscles atrophy that could be worked & reawakened, but to not overdo it.
alice's improvements are fantastic, and some nerves that were completely unresponsive, such as the perineal nerve - have begun to show response - so we're expecting these to progress in the next 6 months.
the best thing to hear from dr driss is that she expects all of alice's nerves to come back (this from a neurologist is amazing news - they tend to be so cautious and conservative)
dr burt said jim will show improvement in 6 months, then again in 1 year, then again in 18 months...
but it's one step at a time - for now jim is focusing his effort on using the walker, and walking down the hallways..
GOOD NEWS - just got a call from paula with the lab results - the liver enzymes went way down... so no worries ! they just want to make absolutely sure they stay on top of anything ... "preemptive medicine" as dr burt calls it.
Posted by me
at 12:14 PM CDT
Updated: Friday, 26 March 2010 7:25 PM CDT
Tuesday, 23 March 2010
discharge day !
today's discharge day !
jim's coming home tonight - he's just waiting for one more doctor's visit, the neurologist, and he's free to come home.
his breathing sounds good, his virus swab test is back negative, his blood cell numbers look good..
now his pain level was high, and this concerned him (this is why a neurologist is going to see him before discharge) - but when dr burt and dr testori came by and he evoqued this pain, dr burt said this is normal, it's part of the process.. why ? because dead nerve cells feel nothing , but when they start waking up again, the pain flares up too.
alice felt this too, it's all part of the process - rewakening nerve cells hurt..
alice has had a day off pain pills just yesterday - for the first time since the beginning of this illness - today is day 2 without pain pills.
so it will take a while. dr burt said he'll have up days and down days (he added this is true for any illness but even more so for neurological ones).
dr burt said it'll take one year to 18 months for the healing to run its full course.
he told jim to work with a physical therapist - but not in a "no pain no gain" way.
jim has been in bed for 4 weeks now, muscles have atrophied.. so it's going to take a lot of work and effort to get those muscles back, and a lot of patience to let the nerves heal over time.
as margarita would say, "poco a poco" ... a bit at a time.
for tonight, we'll probably have pasta and watch "the godfather" together...
Posted by me
at 5:55 PM CDT
Sunday, 21 March 2010
off oxygen !
you'll be happy to know that jim is doing better. already yesterday afternoon, i found that speaking wasn't tiring him as it still did the day before.
he's feeling "tired of being tired" - and i feel this frustration is a sign of healing too : he's starting to get his energy back.
he's been working with the physical therapist - and today the nurse, stasia, and alice, took him for a walk around the hall.
also - and this is important - he did this walk without the aid of oxygen - and has a 95% intake of oxygen now, breathing on his own. this is significant, as it means that he doesn't need his oxygen anymore. we were worried it might take a while for him to wean off of it - but today dr burt asked that he only use it when he feels he needs it.
the doctors told the nurse that he would be leaving in 2 days - jim predicts 4 days... so we'll see - in any case, discharge is around the corner now
he won't be entirely over this - the doctor said it would take an extra week to 2 weeks to feel healed from this. but it does feel like the light of the tunnel is there.
he'll be able to put this in his past and just focus on recovering, and on physical therapy.
now keep in mind jim's nerves are not going to heal from one day to the next : now begins a work of patience as the myelin around his nerves rebuilds and slowly he will remember what it is to live with a normal nervous system again..
all those systems affected will begin to heal - and as nerves begin to communicate again with muscles they will get stronger, and he will regain his independance..
but nerves grow at the pace of hair : 1 mm a day.
to give you an example, when alice had her "nerve conduction" tests a couple of weeks ago, they showed a clear improvement - but there is still much improvement to go. also, the top of the legs show much better nerve/muscle communication than do the calves - as the nerves grow down the legs, they just need time -and the neurologists said she will see the improvement when she comes back in 6 months. so her reflexes have come back at the knee for instance, but not yet at the ankle.
the neurologists tested her "sensory nerves" in her hands, saying they didn't expect to see any results yet as those are the last to heal - but she did show an improvement of 5%, and they were excited about those results, saying again she will see a vast improvement in 6 months - you just have to give it time.
alice will be see the neurologist this week to discuss these results further, so we'll have more information for you then.
so, as difficult as it is sometimes, it's important to understand that the healing is now a process - and sometimes, one day's success can be the next day's discouragement : it's like watching a child grow in what you think are surprising spurts, but it's really all happening every day, continuously.
Posted by me
at 4:03 PM CDT
Updated: Sunday, 21 March 2010 4:57 PM CDT
Saturday, 20 March 2010
COURAGE
(entry by alice this time)
they finally found a bed for jim back in prentice-- where he was before. so he is out of ICU and back in his old ward where things are familiar and the ambiance is certainly nicer... he’s in room # 1588.
at this juncture, the doctors and nurses are just taking strict care of his flu and nursing him back to health. each day he looks more like the jim we all know and love.
when i visited him yesterday (friday), a team of doctors came in to check on his flu. they said his lungs were much clearer and that he is doing considerably better. this was obvious to me by just looking at him-- his color looked better and his breathing and talking were significantly improved.
while jim is definitely getting better from this little set back, he sure did get hit hard... i think sophie already spoke of the virus (RSV) in earlier posts but just in case, here is a link:
http://en.wikipedia.org/wiki/Human_respiratory_syncytial_virus
it is usually reserved for young babies or very old people due to their diminished immune systems-- as luck would have it, jim’s immune system is much like that of a baby’s since the treatment... making him susceptible to infections that a normal immune system would scoff at--
his numbers are all good, he is eating and he is able to use his computer for short stints... he is tired though and gets winded easily, hence not being able to talk on the phone for any length of time. he also has his usual, if not more, pain level-- which means that he is receiving medication to ease those symptoms... rest is undoubtedly the name of the game right now.
jim has been concerned at losing touch with you all-- the people in his life-- perhaps this would be a good time to make comments on his blog so that he knows you are all there and aware of everything going on-- you might also let him know that he need not try to call until he gets his oxygen back ;-) he does read your comments and they mean so much to him...
as an aside, this flu that jim caught has nothing to do with his CIDP or with the treatment. simply, he caught this virus and, besides slowing down his timeline for healing, it should have no impact on the efficacy of the transplant... these are words spoken directly by dr. burt himself!
while composing this blog post, i had written an email to jim asking him if he had any words for his blog and he just wrote back the following: “pass loveand thanks - hands prevenent me from type or txt” note that his hands are still very shaky due to the steroid treatments they’re giving him-- something that will get better over time.
p.s. you would all be proud of his strength and courage throughout this-- he has truly been amazing--
Posted by me
at 7:23 AM CDT
Updated: Saturday, 20 March 2010 9:44 AM CDT
Friday, 19 March 2010
jim was transfered over to the prentice ward last night, so his back in familiar settings.
a pulmonary doctor came by just after his transfer, listened to his lungs, and said he had almost no wheezing.
today, 3 other doctors came to listen to his lungs and confirmed his lungs sound better.
dr burt told him to expect to still feel very tired for 1 or 2 weeks - this takes a while to fully recover from.
that's the key word now - as dr burt said, rest rest rest.
jim thanks you for all your kind words, emails, cards.
he knows he needs to rest and not talk for now, so he is keeping phone communication to an absolute minimum.
but he really does appreciate your messages.
Posted by me
at 8:08 PM CDT
Updated: Saturday, 20 March 2010 2:07 AM CDT
Thursday, 18 March 2010
i just came back from jim's room. he is still in ICU and may stay there again tonight as they are still waiting for a room to be available in prentice.
dr testori came by, and explained to him that as he is doing better they will lower the steroids they are giving him intravenously. the steroids help the lung bronchioli to expand, but they also give strength to the virus, so it's a fine balance.
he explained this virus does not work like bacteria do in the lungs : with bacteria you get mucus buildup. this virus creates no mucus, but acts in the bronchioli, the little bags of air in the lung (like tiny holes in a sponge) which tense up and spasm.
so basically, jim's lungs feel tense - his breathing (exhalation particularly) feel a bit strained - so he's talking normally, but you can feel it's tiring for him. dr testori pointed out that when he talks, his oxygen intake is reduced - and we could see that on the monitoring screen where his oxygen absorption went down to 92% while he was talking.
but he is feeling better today than yesterday - and dr testori pointed out that each day he will feel better than the last. he said that it will probably take about 10 days before his breathing feels totally normal again : even when the virus is gone, it will take a while for the bronchioli to totally relax.
they are taking swabs every day to see if the virus is still there, and he will only be discharged when there is absolutely no more trace of virus - that'll probably be in 3-4 days.
jim said he's happy to stay in ICU - doesn't mind that a room isn't available yet - not only because of the extra care he is getting (one nurse for 2 patients in ICU) - but just because the food is better. he had meat & gravy & mashed potatoes for lunch - happy guy. :-)
Posted by me
at 1:54 PM CDT
Updated: Friday, 19 March 2010 3:48 AM CDT
breathing better
hello all,
jim is doing better this morning - all his numbers are stable and more importantly his breathing is better.
he is still in ICU only because they don't have a room available for him yet in prentice ward - but my guess is they'll have one today
his nurse told me "although he is doing much better he's still not ready to be discharged"
well - we know that ! jim will refuse discharge this time until he knows beyond a shadow of a doubt that he is past this virus and can breathe well without the aid of oxygen at home.
and that is reassuring - that he won't "tough guy" this one. he'll wise-guy it.
also, please remember that if you've sent emails or text messages to jim that he really appreciates it and does read them, but he knows not to exert too much energy in answering them, as much as he would like to. so please don't feel like he is ignoring your messages - on the contrary, he really appreciates them - and will get back to you when he gets better.
we have to remind him of that - and we know you know :-)
Posted by me
at 11:10 AM CDT
Wednesday, 17 March 2010
so after the horrendous day for jim yesterday, he is feeling better and is still under the care of ICU while they wait for a bed to free up in the "prentice ward" where he got his transplant and where he is followed by dr burt's team. it could be that a room doesn't free up until tomorrow - but it's nothing to worry about, really - as he is getting great care there. he likes his monitor which shows all his vitals information continuously..
again, the main reason why they brought jim in ICU was to be able to give him nebulisers more often than the maximum of once every 4 hours at prentice ward. they also have the team of pulmonary technicians close - and could keep a close watch on him.
he is still getting oxygen, and they've given him steroids (jim wasn't thrilled with that), antibiotics, antivirals...
his numbers are good : his blood cell counts are up, his blood pressure is good, and his heart rate is down (it was very high yesterday when he was admitted), temperature is back to normal.
although he can talk he's still a bit tired and trying to keep away from the phone - listening to his mother's advice that a wounded dog stays in a corner until he is well again... (as opposed to us humans who pull out our cell phones, computers, etc.. when we should be just healing)
so don't worry if he doesn't answer your call : he is just heeding good advice
jim is very clear on one thing : he is not leaving the hospital until he is fully healed from this virus.
and i have to say i think that's a very good idea.
he's certainly shown what a tough guy he is in the face of all this adversity.
no point in testing that again !
Posted by me
at 6:15 PM CDT
Updated: Wednesday, 17 March 2010 6:45 PM CDT
(just a quick entry before going to see jim)
Jim is in stable condition and has been getting nebuliser treatments to clear his lungs.
He was transfered for the night to ICU where they could keep a close watch on him, and most importantly provide him with as many nebuliser treatments as he may need.
(In the ward where he was yesterday they are only allowed to give him a nebuliser every 4 hours - in ICU there is no such limit, and the specialized team is right there)
we are going to see him now, and will be bringing him his phone (but he most certainly will be too tired to answer, so just know that quick text messages or emails are best at this point).
alice spoke to jim and he said he is feeling better and he hopes to get moved back to a room in the prentice ward (where he was yesterday) today.
he said one thing is for sure : he's refusing to be discharged with oxygen tanks : if he still needs oxygen, he'll stay in the hospital.
so that's reassuring - at least he won't be pushing to be discharged early.
Posted by me
at 10:00 AM CDT
Updated: Wednesday, 17 March 2010 1:57 PM CDT
Tuesday, 16 March 2010
i'm so sorry for all of you who have been anxiously awaiting for an update since our last entry...
it's just been a little crazy
so jim was discharged from the hospital yesterday - dr burt gave him the option of being discharged to heal at home in his bedroom here, or to stay on in the hospital where he risked being exposed to other germs... well naturally jim said he'd be better at home. his fever was down, he had broken a sweat, and all in all it looked like he was just getting over the last of this rsv infection. they had a technician meet us at home who installed an oxygen machine so that jim could stay in bed and get good oxygenated air through this small tube that slides behind the ears to hold the oxygen flow through prongs into the nose.
well clearly that air dried his nose up because he started having a nose bleed that just went on and on until we called the emergency number and dr burt told him to sit up, relax and hold his nose tightly for the bleeding to stop.
a couple of hours later it still hadn't stopped and was affecting his breathing, so this time jim called and they told him to go to the ER.
so we went to the ER, and (to make a long story short) after an hour's wait jim got fed up and decided he was much better in bed than sitting in an ER full of sick people. his breathing felt a bit better too. so we got back to the hotel.
this morning, jim had 100.7. so we called the nurse who said we should go back to the ER. well that was the last thing to tell jim - there was no way to get him back into an ER. so she said she would get a room ready for him and call us so we could go directly there.
by the time his room was ready (about 1 hour later), his temperature had risen to 103.5 (!) - it took all the strength jim could muster to get into his chair, and down one block to the prentice building. once there, it turned out the room wasn't quite ready yet, and it took 30 mn. before he got a room, thanks to paula who actually came in person to escort him up. (you have to be escorted by a staff member to be admitted, so she sped things up)
jim was immediately xray'ed, ekg'ed, oxygenated, got blood work done, ... and by 30 minutes he was talking normally again, making full sentences.
so he is now back under their attentive care - his fever is down, he's on antibiotics, also ivig to give him a bit of strength, and when i left him an hour ago his breathing was much better.
i am the keeper of his phone today, and probably tomorrow too..
the doctor said he just needs to rest rest rest.
this has nothing to do with the stem cell transplant, and it has nothing to do with the (x-)cidp.
he got this pulmonary rsv virus, and that would knock anybody down - jim just needs to get extra rest, and keep that oxygen intake until his immune system gets totally rid of this.
but he is no longer neutropenic - this is his new immune system fighting this off.
i left him with soothing music, and he was sleeping soundly. his body is just craving deep sleep after this night he's had - and they are keeping a close watch over him.
most importantly, dr. burt said not to worry - he predicts jim will be much better tomorrow, and that this is making his recovery period a bit longer, but that with rest he will get past this - not to worry.
Posted by me
at 7:46 PM CDT
Updated: Wednesday, 17 March 2010 7:32 AM CDT
Sunday, 14 March 2010
update
i just spoke to jim - he feels tired and is sleeping a lot - but know that dr burt came to see him and told him that he is doing fantastically well and that they are not worried at all about this virus because his immune system is now kicking in strong : his "absolute neutrophils", first line of defense, are up to 1.3 (from .7 yesterday afternoon)
also, jim broke the fever this morning : woke up in sweats - all good signs
dr burt has asked that he limit contact with others, so i won't be seeing him again today, but i'll be in regular contact with him or his nurse..
just rest assured that he is doing well though, just sleeping a lot -
dr burt said he might keep him an extra day or 2, as a precaution, so he would be discharged tuesday or wednesday.
i'll keep you up to date on anything new
Posted by me
at 11:44 AM CST
Updated: Sunday, 14 March 2010 4:10 PM CST
good news !
i just spoke to a nurse who says jim is doing great this morning !
i'll post more when i get more info from him - but wanted to quickly pass on the good news
sophie
Posted by me
at 9:47 AM CST
Updated: Sunday, 14 March 2010 4:13 PM CST
Saturday, 13 March 2010
fighting rsv virus
jim has been fighting against a respiratory virus, called rsv, for the past 2 days.
2 days ago his breathing seemed a bit wheezy, but he didn't have a fever.
he did wake up with a fever yesterday though, so they ran a gammut of tests on him, including chest xray, and determined that it is the rsv virus, a respiratory virus most common in infants or elderly (people with immune deficiencies).
he had 102.7 this morning and is now down to 100.4.
so he has been in isolation : yesterday i had to wear mask & gown to visit him - and the doctor has asked that he limit contact to a strict minimum so we have just spoken on the phone.
he asked me to do an entry to keep you informed as - obviously - he is feeling too weak to do a blog entry.
he said the doctors told him they are very relieved that he is getting this now and not 5 days ago : his immune cell counts have been coming up since yesterday : .2 yesterday, .5 this morning, .7 this afternoon.
he actually felt yesterday that his counts were coming up and placed a bet with the nurse who wanted him to eat something : if he was right, he got his chicken noodle soup - if he wasn't, he'd have to eat her choice : a tuna sandwich - he was so confident he pre-ordered the chicken noodle soup.
he sounds tired, but his spirits are up, and he is excited that his counts are coming up.
i asked jim to call me next time he wakes up and i'll keep you posted !
Posted by me
at 5:34 PM CST
Updated: Sunday, 14 March 2010 2:20 AM CST
Tuesday, 9 March 2010
Mood:
a-ok
So everyone probably wants to know: What does IT feel like? How do YOU feel? Did it WORK? The best description I can think of is this:
Imagine yourself in a bomb shelter deep below ground. A tremedous war is being fought up there. Shelling and vibrations are continuing for what seems like forever - some are so close and riveting that you wonder how the bunker doesn't collapse. You're unsure of time - has it been hours or days? All you know is that up there - it is intense. Somehow - you fall asleep. When you awake - its quiet. No more blasts - no more shelling. You give it some time - then more time - all quiet. Then you slowly and tentativley climb towards the bunker opening. You open the hatch and peek outside. All safe - so you poke up and take your first look around - what you see is utter devastation - carnage - ruin - a tremendous battle field - a tremendous war was fought here - BUT the armies have left. They are gone - and its morning - and the sun is shining - and it is BEAUTIFUL !!! THAT is how it FEELS !!!
After the battle.....
Now - How do I feel? Less poetically - I feel pretty darn good all things considered!!
Following transplant the main problem was insomnia - caused by the massive steroid infusion I was getting. In the space of 2 days I put on over 11 pounds of water weight. I was getting around the clock meds - at least 3-4 iv meds running continuously - and 12-15 different oral meds. My weight is measured twice a day - all fluid output is measured - and labs were being drawn once sometimes, twice a day.
Despite all this I had energy and high spirits. Who wouldn't? Being the center of ALL this attention! - 90% of by caring young beauties! lol But I think the steroids were a big part of it. They can be like speed - and the insomnia they caused were problematic for me. I could fall asleep but only for a few moments - and then I would have very strange dreams - in one Dr Burt and Dr Testori - visited me in the middle of the night demanding that I eat ice cream. They tried to force feed me - and I fought back! - HARD!- I didn't want to get any fatter! lol
"Dr Burt? Dr Testori, its 3am wa wa what are you doing here??" "HeHe HaHa!! - IT IS 3am and YOU WILL eat ice cream!!!" "AAAAAHHHHHHhhhh!!!! "
Despite all the chemo and the transplant - my blood numbers were still up. The goal is destruction of the immune system - and all the Cytoxin I had received prior to xplant was designed to act like a nuclear weapon against it. But the effect is delayed. The drugs reach their peak destruction around 10 days after you get them. I began receiving chemo for 5 days beginning on the Feb 25th (xplant Day -6) so the blood numbers are designed to be at their lowest from xplant Day +3 to Day +9 - or according to my calendar Mar 7th - Mar 12th. Today is the 10th - soooooo that means that right now, all my numbers should be at the lowest of the low.
Sure enough - my numbers responded like clockwork. Every morning at 5:30am they draw blood and have the results by breakfast - charting it up like on a "Greenie Board" on the door. Neutropenia (no line of first defense) is when your white cells get below 1.0 (Normal is 4-10) On xplnt day my counts were still in the 3's. Despite Dr Burt's reassurance - I was convinced that my immune system was so strong that it was un-nukable. I rarely get sick - had high blood numbers - and prior attempts to lower the numbers (and slow the progression of the CIDP) using Cytoxin - had failed. But had been done before was non-relevant - prior doses and regimes was like walking up and slugging Mike Tyson in the nose. All ya gonna do is make em mad. What you need is overwhelming force - and thats what we used. What I didn't realize is that I was responding perfectly normaly to having received "the hammer". I finally went neutropenic right around 3am on Sat, 7th - exactly on schedule. The last 2 days my white cell count has been 0.1 (the lowest reading available) in other words - perfectly nuked.
Of course you can't just nuke the white cells and not have it effect the rest of the blood. While there is no goal to hit your red cells or platletts - collateral damage just comes with the territory. The order of "robustness" of your blood cells (from most fragile to most strong) is: white cells (your immune system) then platletts (your blood clotters) and finally you red cells (your oxygen carriers) - Pretty cool actually. If you were going to engineer it - I would think that would be the priority that makes most sense!
Blood basics - for those like me who forget HS Biology.....
All most no one gets through this without needing an infusion of plateletts and red cells. I thought I would be an exception - but sure enough - when my platlet count went to 21 last night (normal 150-350) and my hemoglobin went into the low 8's (normal 13-18) - they infused me with both. In other words - Iam responding perfectly predictably. Much to my chagrin - Iam just NOT that special!! I'll probably get more before my blood numbers start climbing up again.
Kaitlin - Hanging a bag of Hemoglobin (Red Blood Cells)
So when will they finally start climbing? Well - IF Iam Joe Average - they should start to come off the bottom peg sometime late Thursday (11th), and should be exiting Neutropenia about a day later. Of course - you're far from out of the woods with a White cell count of creeping up past 1.0. The won't release me from hospital until they are well into the mid two's. Yeah - that sounds low - but it's enough. Just have to careful about germs. Channel my inner Jules - wash hands - stay away from crowded elevators and airplanes. OK - can do!
So Iam in the very heartland of Neutropenia. What's it feel like? So far - So good! I haven't had any fevers - which is sort of rare. No bleeding - No sores - nothing bad of sorts. Iam being extra special precautious - I do everything they say to do x 2. The only negative is low energy - caused by low red cell numbers. Yesterday was the worst. I was sort of hungover from low numbers, lack of sleep, neuropathic pain in feet and hands and just a "Blah!" feeling. It was a 5 Norco (pain pill) day yesterday.
Today was different. Because I was getting infusions - they gave Benedryl - real strong sedative. That combined with getting back to the oral steroids (versus massive dosage of IV steroids give you) I was finally able to find some sleep - got almost 4 hours. I couldn't do much still. Layed in bed and tried to PT - but it wears you out pretty quick.
********* VIDEO of me doing in an inbed workout!
http://www.youtube.com/watch?v=IirQMN_b-6I
But this afternoon - after the hemoglobin infusion and the sedatives had worn off - and that I actually had 4 hours - I came alive!!! I made it twice around the ward today (with a walker) a total of about 500ft. The most steps I have taken in months!!!!!
******** VIDEO - of me walking around the block!
http://www.youtube.com/watch?v=qP9rZZJH88U
Well - we shall see how we do tomorrow! Taking this a day at a time folks - but so far SO GOOD! And now - it's beddy-bye time for this me and my 5day old baby immune system - so Iam going to say goodnight - and hopefully get some sleep!
ALL SET FOR NIGHT-NGHT.......
Posted by me
at 11:01 PM CST
Updated: Wednesday, 10 March 2010 5:30 PM CST
update on jim
hello !
this is sophie again - it's been awhile.. jim has been so good at keeping his blog up to date - but as he is, understandibly, a bit more tired, he asked if i could let you know how he is doing ...
so jim got his stem cells on the 4th, so we are now at "day +5" - he has been doing remarkably well since and didn't get the intense nausea that can sometimes happen for the 24 hours post transplant.
i couldn't believe how well he was doing when i saw him the next day actually - there he was sitting up, full of energy..
his white blood cell counts are still going down, and should reach their lowest point (called "nadir") today or within a couple days, before starting back up again, building his new immune system.
so jim's physical energy is on the lower side (and actually as soon as his cell count goes back it, his energy will pick right back up too) - but his spirits are hight, and i think he is very excited to have crossed the finished line : the cells are in, and now it's just about healing, rebuilding strength, rebuilding the nerve network..
today he will get neupogen shots to encourage the grafting of his stem cells, basically to push those cells along faster - and he'll have these daily for the next 4 days
so jim has just a few more hard days to go through until his numbers come back up - and then the physical rehab work begins !
Posted by me
at 2:00 PM CST
Sunday, 7 March 2010
Hi FOLKS - BLOG IS CURRENTLY BEING WORKED ON - HOWEVER IF I FALL ASLEEP - I'LL FINISH IT IN MORNING - SO CHECK THEN! IVE HAD INSOMNIA PAST SEVERAL NIGHTS - BUT FINALLY FEELING GROGGY !
HOWEVER - I WANT EVERYONE TO KNOW RIGHT NOW - I AM DOING FANTASTIC!! THIS IS WORKING !!!
Posted by me
at 11:35 PM CST
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