Trying to live life. Something more than just merely avoiding death. The usual.
Wednesday, October 28, 2015
In lieu of flowers, memorial gifts may be made to the Vikki Auzenne Memorial Fund
(#3647050)at the Massachusetts Institute of Technology. Vikki and Joe shared a commitment to supporting MIT
students and Joe has created this fund as a lasting memorial to Vikki.
Gifts may be made by check
or credit card.
Checks should be made
payable to MIT and mailed to:
Feel free to contact Bonny
<bonnyk@mit.edu> or 617-253-9722 if you
have any questions about your memorial gift for Vikki.
In Loving Memory
Vikki Olson Auzenne
November 10, 1956 to
October 28, 2015
Heaven has a new angel. She made our world
a better place and she will be missed by all of us who knew her and loved her.
*******************************
In lieu of flowers, memorial gifts may be made to the Vikki Auzenne Memorial Fund
(#3647050)at the Massachusetts Institute of Technology. Vikki and Joe shared a commitment to supporting MIT
students and Joe has created this fund as a lasting memorial to Vikki.
Gifts may be made by check
or credit card.
Checks should be made
payable to MIT and mailed to:
Feel free to contact Bonny
<bonnyk@mit.edu> or 617-253-9722 if you
have any questions about your memorial gift for Vikki.
Sunday, October 25, 2015
JUST WHEN IT SEEMED LIKE THINGS COULDN'T GET WORSE, REVISITED.....
Last night, the CODE BLUE alarms sounded....no pulse, no blood pressure. It took 15 minutes of CPR to restore her pulse. Nobody knows what caused the event. They are pulling out all the stops to treat her and try to figure out what is going. For now, there are only questions....no answers. When you add this new problem to her neurological issues, it is hard to find a good path to recovery for her.
I am not giving up on her, but I am beginning to think its going to take a minor miracle for her to overcome all of things that are going wrong....or maybe a couple of them.
Saturday, October 24, 2015
JUST WHEN IT SEEMED LIKE THINGS COULDN'T GET WORSE......
I got to the hospital this morning to find Vikki even sicker than yesterday. They did a CT of her abdomen last night and then decided to do a head CT (no one called to advise me). Today's problem list has gotten much more complicated and now includes: pancreatitis
and pancreas damage with possible bleeding in the pancreas; colitis; blood
clots in the kidneys and kidney damage; blood clots in the spleen and spleen
damage; a possible stroke with blood clots in the brain and possible
neurological damage……multiple infections……ICU delirium and disorientation…..possible
blood clot in the heart. How on earth
does a human being endure all of this and bounce back. They have done an ultrasound of the blood vessels in her arms and legs looking for more clots. They have done a echo cardiogram. They are setting up to do a colonoscopy. And they are planning to do an MRI of her head for more detail. No results yet. No diagnosis. No treatment plan.
Friday, October 23, 2015
It's been about two weeks since the last update.....two weeks of little progress, more challenges and more setbacks. I haven't written much because I don't like sharing nothing but bad news.
Updates: On the positive side, Vikki is able to do pressure support trials for 4-6 hours daily. This says that the lungs are working pretty well and she can breathe with minimal support from the ventilator....but only for limited periods of time.
But, she is not making a lot of needed progress in her respiratory recovery. She has tried using the trach dome - just oxygen with no mechanical support - a couple of times in the past week or two. She has only been able to handle this for short periods of time. It's good that she can do this, but the short duration of each trial indicates she has a long way to go to get off the respirator.
Medically, she is struggling.
She has a pancreas infection, cause unknown. It is being treated but there is no good treatment for this. They are working on finding the right drugs. Sometimes they have to stop the tube feeding to let the pancreas rest. They believe she has lost of portion of her pancreas. They also believe there is some kind of fluid buildup around the pancreas that may need attention.
They are concerned that she may have some internal bleeding....probably minor, but enough that her hemoglobin has dropped several times to a level required a transfusion. They believe this may be associated with the pancreas infection. Interventional radiology was going to attempt to block off the bleeding area but decided they weren't sure they could find it and didn't want to risk an invasive procedure.
GI is believes that the fluid build up around her pancreas may actually be putting pressure on the area that was bleeding and this may be helping to control the bleeding. They don't want to drain the fluid because they are worried that may lead to more bleeding.
The only plan they can come up with is wait and monitor her for changes. I finally had a good talk with the GI attending. This is a major referral center for pancreas treatment, so she is in the best place possible for treatment. With that said, there is not much they feel they can do other than wait....and hope it gets better and not worse. They have told me that her type of problem could take months (yes, that's not a typo) to resolve itself.
Meanwhile, she is in a lot of abdominal pain. The pain has been limiting her ability to do all of the therapy activities that she should be doing to regain strength.
To add to her troubles, she now has some kind of colon infection. That just showed up this week. They are doing cultures to figure out what type of infection it is and how to treat it. They have stopped one of her anti-rejection drugs that could be causing this new infection. Now, they have to find a replacement for that. This is another wait and monitor issue. They have talked about doing a colonoscopy to take samples for testing, but they are worried that her colon is too inflamed and that they could possibly cause damage with the scope.
She has reverted back into her state of encephalopathy (the delirium) with all of these challenges. We can't tell what's going on...whether she just wants to block everything and everyone out or whether there is a clinical cause for this. Whatever is causing it, she has basically been totally withdrawn for the past three days. She will open her eyes when you speak to her, but she will not respond or acknowledge. She won't smile. She won't squeeze my hand. She won't write notes on her pad. There is no way to get any response of any kind from her. I tried playing Jimmy Buffett tunes yesterday....that didn't work. I am running out of ideas. And of course, this is another challenge for the therapy team as she won't cooperate with them.
So my life has become 10-12 hours of bedside sitting....talking to multiple doctors...trying to understand what's going on....and hoping for some kind of good news for a change. We had a big care conference with the attending docs from 4 different teams that are treating her. I am pretty confident she is getting the best care they can provide.
The thing I can't understand is why this is happening to my lovely, caring and compassionate wife. I can't think of anything she has done in her life to deserve this kind of crap being heaped upon her day after day after day. If there is a god, why is this happening to her...and why isn't he answering the prayers of all of her friends and relatives. What is this world has she done to deserve this and when is she going to get a break. I thought getting the new lungs would be the beginning of a new chapter in our life, but I did not expect that this chapter was going to be such a nightmare.
Monday, October 12, 2015
Here is the jellyfish globe. The photo does not really show how beautiful this is.
Sunday, October 11, 2015
Gotta love this smile!!!! Vikki can light up the room with her smile.
Today was a very weird day. I got to the hospital to find Vikki awake, alert and actively communicating. She had filled up a couple of pages with notes and questions. She seemed to think she was back at work and was writing some messages about needing the reset all the IP addresses and reboot all the systems, which was hard to follow.
She spent some time up in the chair and did a
pressure support trial for about 2 hours. She opened her anniversary present...the "sideswimmer jellyfish" artglass that I got for her after our trip to visit Candace in Charleston. She was quite surprised.
Later in the day, she seems to get more confused.
She was convinced she couldn’t breathe even
though her O2 stats were at 96% to 98%. She was also convinced the respirator
was controlled by IT and needed to be fixed by the IT help desk.She kept asking us to get someone to reboot
all of the equipment and reset the IP addresses. I have no idea where all this
was coming from and could not convince her that everything was OK.
She also said she needed her home oxygen, even though
she was on the respirator and her O2 stats were fine. So her nurse got a cannula and
connected her to the wall oxygen supply, along with continuing to use the respirator. We turned the
flow rate up to 6, which is her normal setting when sleeping at home. Even with the additional oxygen, she was convinced she couldn't breathe and kept asking us to contact the network help desk and reboot the systems. I couldn't convince her that she was getting enough oxygen.
The GI docs had stopped her tube feeding for a couple
of days because of the pancreatitis. They hoped that this would allow the pancreas to rest and recover. Vikki was writing notes to the nurses about not having received food or medicine for the past two weeks. We kept trying to convince her that she was getting all of her medicine and that the feeding had only been suspended for a couple of days.
Vikki also was very upset about her nurse from
several nights ago. She wrote a whole series of notes about the “evil nurse” who had pulled out
her PICC line and was trying to send her to the psych ward, or the
psycho ward as she called it. She kept writing notes about the "evil
nurse." We were finally able to convince her that the evil nurse would never take care of her again.
Vikki was also writing notes indicating that she was having PH symptoms again. She wanted her PH medicine back. She kept writing
notes that she knew what the symptoms were and she was sure she was having
them. She asked the doctors to give her a right heart cath. I was able to calm her down by telling her we would get Dr. Pritzker to check in on her.
She got really upset a couple of times that no
one would believe her. At one point, she started
worrying that she was dying.I did
everything I could to calm her down, with help from her nurse Emily and one of
the residents.
I finally left with a splitting
headache…compounded with the confusion of how to help her. She would not listen
to reason or logic, and there was no way to convince her that she was doing
well and that all of her equipment was working just fine.
Another example of ICU delirium. Let’s hope for a better day tomorrow!!!
Saturday, October 10, 2015
IT'S BEEN A WEEK WITH LITTLE PROGRESS AND NO POSITIVE NEWS.
Mr. Snoopy is still on duty and watching over Vikki to keep her spirits up.
Our anniversary was a non-event this year....the presents are still in the corner of the room waiting for better times.
It's been a tough week for Vikki.
She has a new infection and they are working on figuring it out and coming up with a treatment plan. That's not helping her breathe like she needs to.
She also has a lot of excess fluid around her lungs. That's not helping her breathe like she needs to. She ended up back in procedure room yesterday, where they drained fluid and put a chest tube back in to keep the drain going for a few days.
She is suffering a bit from ICU delirium. Google it and read about it. It's scary. They say it affects as many as 80% of all ICU patients. They get disoriented and confused....even angry at times. She seems to be in her own little world right now and we just have to keep reminding her of the when, where and why of what's going on.
The pulmonary team told me earlier this week that she is the most complex transplant patient they have treated in the past year, so we still face a long and challenging struggle. The good news is that she can sustain herself when they do breathing trials, and I think that means the new lungs are working as needed. But the complications keep coming....first one, then another and so on. And until they get some of these complications out of the way, they are limited in what they can do with breathing exercises as well as physical therapy.
There is a pretty good chance we will celebrate Thanksgiving in the hospital. Its going to be that big of a challenge to get her in a position to move to rehab. This is not the outcome we were prepared for, but its still better than the alternative if you know what I mean.
Tuesday, October 6, 2015
PS:IT’S OUR
ANNIVERSAY…..8 YEARS!!!!!!!
Got to the hospital around 10:30.Vikki is clearly not herself.She is heavily medicated. She pulled out her PICC
line last night. She was extremely restless and agitated. Her heart rate and
blood pressure were at alarming levels.This morning, she does not recognize me and does not respond when I try
to get her attention.I don’t think she
even knows who I am this morning.
The doctors finally made rounds. The new ICU attending is a
pompous, arrogant SOB…..he just confirmed my opinion that these guys are
running a factory with no personal concern for the patient.He dismissed or interrupted every question I
asked. He contradicted what the doctors before him have said, and dismissed me
when I tried to get him to explain.
Now, they are worried about spots that showed up on
xray….plan to do broncoscopy this afternoon.Magically, they aren’t worried about the fluid around here lungs (that
the prior team WAS worried about) and magically, they now say her pancreas
issue has been resolved (I need to hear that from GI since they are supposed to
be managing that treatment).
The care coordinator had arranged the care conference I
requested for this afternoon, but I had them cancel. There is no point in
getting in the room again with this guy…..he is the epitome of an arrogant
world class jerk.Trying to have an
interactive dialogue with him would be a waste of time, and it would probably
make me even more frustrated than I am now.
Unfortunately, we are stuck here and stuck with this jerk
for the next two weeks.If I could move
her, I would certainly try to figure out how.
Sunday, October 4, 2015
October 4....Day 27 Reflections on the Weekend
It has been a tough, challenging, emotional weekend. I spent the weekend here - did not go home Saturday night just to stay in touch.
First, we have been trying to diagnose the neurology stuff. The neuro docs have talked of blood clots and evidence of a small stroke in Vikki's brain (very small and not significant). They did another scan late Saturday afternoon to check the blood flow in her carotid arteries, worried about possible blockages that could lead to more problems in the future. We have been waiting that one out. We saw the neuro attending late Sunday morning and learned there is some blockage but not enough to cause concern and not enough to require intervention. Vikki takes aspiring and they think that is enough to prevent any possible complications at this time. Another bullet dodged!!!
Next, we have the GI stuff. They have been looking for pancreatitis and trying to determine how severe it might be. She has several enzyme levels and other markers in her lab work that suggest she may now have this problem. They did a CT scan with a contrast dye late last night, and we have also been waiting that one out. We haven't seen the GI attending today, but the ICU team went over the test results as they interpret them. The tests confirm mild pancreatitis....cause unknown. It's a digestive disorder, so they have stopped her tube feeding. That is apparently common treatment. They also changed one of her antibiotics. Her numbers were closer to normal today, so they are "fingers crossed" that this will be resolved in a few days.
Meanwhile, she is in pain....and its limiting her desire to work with rehab and her ability to do pressure support trials for any extended period. In addition, they have determined she has an uncomfortable amount of fluid around both of her new lungs. That is going to have to be drained...as soon as they feel the pancreatitis has been resolved. The drains involve a trip to interventional radiology, where they will put in a couple of small catheter tubes and keep a drains going for a while.
There is no shortage of challenges trying to recover from this surgery!!!!
The good news of the day is that Vikki is feeling good. She asked if we could put her in a wheelchair and take her out of the room for a while. That involves getting a special portable, battery operated vent and getting an escort from respiratory therapy. But the staff made it happen and we took a long ride around the 4th floor and then the 6th floor. All Vikki did was ride, but I think she was so happy to be out of bed and out of the ICU room. Big smile!!! And she had a chance to exchange High 5s with some of the nurses who have taken care of her in the past. It was a great feeling to get out and she how much the staff in the hospital care and how excited they were to see her out and smiling!!!
Now, if the Vikings can just find a way to beat Denver
October 4th.....Day 27
Up and in the wheelchair for a ride around the ICU, a visit back to the Surgical ICU, and a visit to our former "home" in Unit 6C. Still using the respirator, but this is Vikki's first day out of a hospital room since surgery.
Wednesday, September 30, 2015
TIME TO PULL THE RABBIT OUT OF THE HAT AND GET ON WITH THE RECOVERY PLAN (Thanks to Joe's sister Donna for the rabbit)!!!
Today is New Lungs Day 23. Last week, Vikki traded the big breathing tube for a tracheostomy. She still needs the respirator to help her breathe, but now we can all see her beautiful smiling face. She's not able to talk yet, but maybe soon.
Most of the news coming from the medical teams is good. The transplant surgeons are done with her and passed her care over to the pulmonary team. She moved from the surgical ICU to the medical ICU around the corner. We have a whole new group of nurses and aides to get to know. But its part of the normal progression for transplant recovery.
So what's going on now---something they call pressure support trials where they turn the respirator down to its lowest settings and let Vikki breathe totally on her own (the machine kicks in if she needs a bit of help). They increase the trial time as she does better and better. She is now up to 12 hours a day on her own. They keep the machine on overnight while she sleeps, and then she does another trial the next day.
And she is also seeing PT/OT/Rehab twice a day to start to work on rebuilding her muscles. For now, she is doing exercises in bed or in a chair. They have this really cool sling to help her move into a chair...sitting up is good for rehab. The next challenge will be standing...and then walking again. But she has a long way to go to get that strong.
The doctors are still working on a few issues...a new infection that has to be treated, probably from the breathing tube....and a periodic period of apnea where Vikki just does not breathe at all. This is a bit concerning, as it could indicate some neuro problem. Or maybe she's just tired and still needs to figure out how to make these new lungs work for her.
Stay tuned. The next milestone is putting a voice device in the trach so Vikki can talk....then getting her strong enough to stand...and hopefully moving out of the ICU...maybe in a couple of weeks.
Let's all hope there's nothing but good news from this point on.
Monday, September 21, 2015
September 21
Watching Dancing with the Stars tonight!!!
Balloons from Terry and Denis are still flying high.
GOING NOWHERE FAST!!!!!
It's been a week since the last update, and two weeks since surgery.
Unfortunately, this past week has been a frustrating period of little or no progress. Vikki was not able to breathe independently. I got to the hospital on Wednesday of last week to find the staff in the midst of replacing the breathing tube and putting her back on the vent machine. (Of course, no one called me to tell me she was having breathing problems).
She had to go back to a routine of daily pressure support trials (i.e., breathing with minimal assistance) trials to see if she could get strong enough to remove the vent and tube. The do the trial once or twice a day. She has one good result and then one that is not so good. So she is making no progress toward removal of the vent and tube. We are both getting frustrated. She cannot talk. They have to keep her in restraints so she won't pull out the tube. I never expected things to be this slow and difficult.
And the worst part of the whole experience is the medical treatment. She has two (maybe three) different medical teams responsible for her care....surgery, pulmonary and cardiology. The communication between the doctors is almost non-existent, and the story that I get from them changes from one team to the next and from one day to the next. It almost seems like they have never done this before and have not yet figured out how to talk to each other and how to talk to patients and their family.
One day we hear the went ahead with the surgery because the lungs were such a good match. The next day we hear that the donor was a smoker, had mild pneumonia and had some other problem - but the lungs were still "good enough" and they didn't want to wait. One day we hear that Vikki is progressing slowly because she was so weak going into the surgery and the next doctor tells us she is progressing slowly because the lungs themselves were not in the best condition. We have not sent the attending surgeon since he completed the surgery, so we get all of our information from a resident or fellow. The teams change every couple of days so there is no consistency.
On top of that, there is no coordination. The pulmonary docs say she needs to start physical therapy to rebuild her strength and conditioning. Then the PT department comes in to say they only work with patients in the ICU three days a week (how is she going to get stronger with that kind of rehab?)
I discuss this with the pulmonary docs and they "negotiate" a five-day a week schedule with therapy. So the therapists come in and spends about three minutes helping Vikki stand and sit on the bedside twice and then leaves. And we haven't seen a therapist again for 3 days. I guess they can promise anything, but they have no accountability to actually follow through on the plan.
Today, the poop really hit the fan around here. The pulmonary docs and the surgeons have been saying that they don't want to keep her on the breathing tube for more than two weeks (specifically using the term "dangerous" in talking about a longer period). The PA from surgery and the attending from pulmonary were in this morning to talk about a tracheostomy so they can give her breathing support through a hole in her neck, which allows her to breathe on her own more and eliminates the uncomfortable breathing tube and which would also allow her to talk. They indicated they plan to talk to thoracic surgery to get her on the schedule, hopefully as early as Wednesday (but we agreed they would push to schedule this for tomorrow since Vikki is so uncomfortable with the breathing tube and since I have to leave town early Thursday). About an hour later, the thoracic surgery team comes in to check on her and to tell me they can't do the procedure for at least 5 days because she is on a blood thinner to guard against possible blood clots. I totally lost it....this is a known fact that is in her medical chart and that everyone treating her knows about. No one could explain why one group of doctors is talking about doing surgery tomorrow or the day after, knowing what medicine she is on, and the other doctors are saying we have to wait 5 days. Now, they are arguing about how long it is safe to keep her on the breathing tube.
I cannot find any way to rationalize this absurd lack of coordination. These people have done this before....dozens of times. I have no idea why they cannot communicate and coordinate. No wonder our healthcare system is so messed up....if this is typical of the lack of care coordination that goes on in a major medical center.
And the worst part of all of this is the effect it is having on Vikki. She can't talk but she can hear all of this going on around her. She is frustrated. She wants to get the breathing tube out. And she knows we can't get a straight answer from anyone and the doctors can't even agree among themselves.
This too shall pass. And we have to keep our eye on the prize and the ultimate goal. She is getting better, slowly. And hopefully they will figure this out.
Stay tuned for more updates. And hopefully for better news.
Monday, September 14, 2015
TODAY MARKS A VERY BIG MILESTONE....NEW LUNGS, DAY 7
The new lungs are working….they turned off the respirator
today and removed the breathing tube….check out the photo and the big smile.
Next challenge will be getting her voice back and passing
the “swallow test” so she can start eating.
Her fever is down, so hopefully the infection(s) are under
control.
One more chest tube drain came out today….two more to go.
Vikki is still in the ICU unit. We’ll see what the
doctors say tomorrow about getting her into a regular room and back on a rehab
schedule.
WHAT A DIFFERENCE 48 HOURS CAN MAKE!!!!!
Finally, a good day with some
positive developments!!!! This morning, Vikki stayed on the
pressure test for breathing for about 6 hours now. She “passed” with flying
colors…..breathing on her own with minimal support from the respirator……and her
heart rate and blood pressure stayed in the normal range. I am out
of town, headed to a client meeting tomorrow morning. I talked to the
nurse before boarding my plane and learned Vikki was doing another pressure
test and breathing well. Once the doctors are pleased with her breathing
during these tests, they will take her off the respirator and remove the
breathing tube.
Then she will be able to talk
(hopefully, although it may be difficult for a few days after they get the tube
out) !!!! And the recovery process can move on to a new
phase. This is like - - jump up and down and shout HOORAY!!!
Let’s all keep our fingers crossed for continued progress.
They removed one of the chest
tubes today. There are four of them that drain stuff from the chest
cavity around her lungs. That’s another sign of positive progress.
Hopefully, the rest will come out soon. Once they get those out, the
therapy folks can start to work on her.
She still has a couple of
related issues that the docs are working on…..a fever probably caused by an
infection, and a slightly irregular heartbeat….both of which seem
treatable. They have been chasing this infection for a couple of days. We
know her new lungs came with some kind of infection and we also know the
catheter she was using for her hypertension medication had developed an infection
(It was removed a couple of days ago). They did another broncoscopy today to
pull secretions out of her lungs. They are doing cultures on everything,
but the results take a few days. They have some antibiotics going now.
Her fever was done this afternoon.
Its about time for some good
news!!!! I guess she woke up this morning and told herself
“time to move on to the next step of recovery.” And she’s doing it.
She can’t communicate except with head nods until the tube comes out, but you
can see the smile in her facial expression. Pretty soon, she’ll be
writing these updates herself.
I think my sister summed it up when she wrote:
It seems that
every time we feel low, she pulls a rabbit out of her hat and restores our
spirits.We will keep watching for her
"tricks".
She still has a big hill to
climb. She was just beginning to walk around (with help) before the
surgery, and I am sure this will be a setback in her rehab. No one
is talking about timetables yet, but at least we can begin thinking about
recovery.
Friday, September 11, 2015
Oh...and one other thing for everyone who follows this blog and is also on Facebook and other social media. This information does NOT belong in the social media world. Some people have posted full details including Vikki's full name, the surgery she had, and various other details out there for anyone and everyone to see. This is a very private experience and this information is ONLY for the people that Vikki have selected to receive her messages. Please respect our privacy and refrain from putting this information out for all the world to see on your social media pages. Thank you.
September 11 Posted by Joe
For sure, its been once heck of a week….starting with the
call for the transplant….then the waiting, waiting, waiting to confirm the
match….then more waiting for the surgery to begin…..and then more waiting,
waiting, waiting for the surgery to be completed.
Vikki has had her new lungs for 4 days now. And it
upsets me to say she is not making much progress toward recovery. Its
going to be a long, tough struggle….more than we ever expected. I have
been at the hospital daily…12 hours a day….there is a constant stream of
doctors and others in and out of the room from more specialties than I can
count.
Things aren’t bad….but they’re not what I would call
good. The new lungs came with an infection, and that has to be
treated. Vikki developed her own infection, which also has to be
treated. Her blood pressure is unusually high, and that has to be
treated. She has some kind of heart irregularity, and that has to be
managed. And then there’s the normal stuff for a transplant….pain
management and anti-rejection drugs. I have lost count of the number of
tubes she has….some to get medicines into her body, and others to drain icky
stuff out. She had two broncoscopies this week to clear out her new
lungs. She has been to interventional radiology a couple of times ….
for IV insertion, for pain catheters and for a feeding tube.
She can’t breathe on her own yet. This scares me, but
the doctors are not alarmed. They have tried several tests where they
turn down the respirator and see if she can breathe independently. Simply
put – she flunked the tests. Today she was able to go for 30 minutes,
which was an improvement. She was getting tired, struggling to breathe
and running her blood pressure way way up….so they stopped the test. She
has to pass this test a couple of times before they will take breathing tube
out. The longer it takes, the more I worry. But the doctors aren’t
worried yet and I keep telling myself they know a lot more about this than I
do. When they start to worry, then I will REALLY worry.
I have to keep reminding myself she was really sick before
the surgery. The surgeon almost changed his mind about doing the surgery,
but he thought the lungs were too good of a match and didn’t want to miss this
opportunity to save her.
At this point, all we can do is wait….let the medical folks
do their thing….and pray that each day will be better than the last.
Thanks to everyone for your support and kind words.
Frustration envelopes me completely. It seems, no matter how hard I try, I"m not making any progress. My muscles just don't seem to get stronger. I do the exercises over and over to no avail.
Then, yesterday, on the way back from OT, my OT tech stops and tells me to try to walk from a spot in the hall to my room..maybe, 50 ft. away. I'm always up for a challenge even when frustrated from no gains. Surprisingly, I walked the total distance without my knee buckling.
This must have brought me more energy, because then when the PT Tech showed up -- we walked 350 ft. without my knee buckling!
Today, I walked 600 ft. and Joe said I was almost walking like a normal person!
This is a big day for me - walking and being able to do the exercises after, I never would have thought such progress could be made overnight.
The last thing I remember is screaming like a banshee in the emergency room on June 13th ---- the pain was so intense and no one would give me anything for relief. I didn't understand at the time but they were forcing me through withdrawal of the morphine and other narcotics that had accumulated in my body from my recent stay in ICU.
The next thing I remember is waking up at 7am in ICU on July 26th -- 6 weeks later--- 6 weeks lost to my memory. No matter how hard I try, I remember nothing of that time and I've been told that I really don't want to remember that time. I've heard people visited me- no recollection. During that time, I was in a coma fighting meningitis and a wide spread case of shingles. Joe tells me that, according to Dr. P., I had a 50-50 chance of survival, and a 10% chance of walking again. I had to relearn everything from eating to walking to writing. My PT and OT sessions consisted of strengthening, small muscle exercises, learning to walk, learning to eat. I'd had a feeding tube while in a coma and when I got an ice chip to melt in my mouth, it was pure heaven feeling the cool water drain into my stomach. I became an ice chip glutton. I couldn't feed myself, so Joe was busy giving me ice chips. When they let me have a spoonful of pudding, oh my....
After a few days of practice, they finally let me eat; but I had to prove to them that I could eat enough calories to sustain myself before they would remove the feeding tube. The kept track of everything I ate and after about a week of tracking, they were satisfied that i could eat enough calories on my own and the feeding tube came out.
All through this time, I had flares of pain in my left leg. Excruciating pain that felt like fire on my whole leg -- this is from the shingles infection. My left leg remains the only location where the shingles is active. I would have these flares of fire up to 10 times a day. They quit completely about 5 days ago -- a signal that the shingles is healing.
My days today are pretty busy, this is what a typical day should look like:
Walking remains a big difficulty. My left leg is still very weak and it buckles on occasion. I need to use a walker and someone closeby to catch me should my left leg give out. I must say the therapists here are great at pushing me farther than I think I can go. It's always let's do one more set, or walk one more segment. They are mean in a good way.
That is my typical day. I have no medical issues to speak of (still have some fluid to get off) and as soon as I can walk and go up 4 steps, I can go home. I don't anticipate any changes in the coming days.
And the best news of all: I'm active on the transplant list and in a very high position!
The day living in the hospital has become pretty predictable. I have OT twice a day, we work on anything from fine motor skills to strengthening my very weak legs. It's strange to look at my legs and actually see the muscles that have atrophied over the weeks lying in ICU.
I have PT once a day. We typically work on walking; my longest distance so far was 180 ft. - that's with a walker, a wheelchair behind me and plenty of help. They don't take safety lightly here.
I still have pain in my left leg - several times a day it flares up into an agonizing pain: It feels like my leg is on fire. That's the shingles - I hope it's a sign that it is healing.
I apologize for not keeping you up to date. It was a scary trip for all of us, I think. I spent several weeks in ICU, sedated, and in a medically-induced coma, to allow my body to heal and recover from a whole body attack of Shingles.
I surprised Joe by being awake on Sunday Morning when he came to visit. All of ICU was tbrilled that I was finally awake!
I have had to learn to eat, again; and, after a week of practicing am finally eating enough calories to have the feeding tube removed. Yay, for me! It doesn't take much to make us patients happy :-)
The next hurdle is learning to walk again. My legs are very weak with a lot of muscle wasting from the time ICU. My chief OT guy says I'm doing great and getting stronger every week.
My current condition: I have shingles in my whole left leg. It is, living up to is potential, very, very painful. I get flares of pain that last about 5 minutes in which I need focus and breathe through.It's probably scary for visitors to watch, but I usually try to warn them all about the flare-ups.
So, I continue to get stronger and when I'm strong enough, I'll be able to go home. No ETA on that yet. :-(
Happy 4th of July from the 6th floor of UMMC! I really can't think of any place I'd rather be or any other people I'd rather have taking care of me.
This is where we are currently:
I am at about 95% mental acuity. I feel like myself! I am able to compute, think clearly, write, and say meaningful sentences.
I am at about 75% physical ability. Today, I was able to walk up 4 steps (twice), do standing exercises, do an arm ergometer for 10 minutes, and go for 3 walks. I do have to use a walker, just for safety's sake
I had a second blood marrow biopsy while on 6C. This biopsy showed no sign of any blood marrow disease or blood cancers! Yay! A Green Light for the transplant team!
The concussion on June 2nd put me on a 6 week hold from being active on the transplant list. I will need to be on blood thinners during transplant surgery and they do not want to risk any further brain bleeds. I will be eligible for the list around July 16th.
Most of all, I feel ready to go home! I still have some medical stabilizing to do (Iron infusions, moving from IV diuretics to oral diuretics) that my doctors think can be accomplished in the next day or so.
I will continue with Physical and Occupational Therapy here in the hospital and once I go home to ensure that I can be in top condition for the transplant surgery.
That is the good and bad news from 6C at UMMC. I should be home by the end of the week!
Note: (Visit the permalink to watch the video content).
So, I continue to recover from being the crazy lady du-jour and I was finally released from ICU on June 28th (after 3 weeks in ICU - half of which I was the crazy lady du-jour, and half of that spent figuring out what was going on). Now is the most difficult part. I need to recover in order to return home. There are no rehab facilities willing to take me and my medication needs. I'm working on cognitive recovery, strength, and balance. At a minimum, I need to be able to climb the 4 steps into the house and the stamina to walk around the house. I will have a home health aide visit for PT & OT once I get home.
Surprisingly, the cognitive portion was very difficult for me: Simple tasks such as remembering a list of 5 items, for about 20 minutes while doing word math problems, memory questions – it really caused more confusion that it should have. But Kyle, my OT tech said I did well and scored a B. We'll hopefully see that score improve over my baseline the next few days. I would love to be ready to go home by the middle of next week. I don't think I'd have any events scheduled outside of the house, but fresh air, my happy spots, and getting stronger in my own surroundings sounds like a wonderful way to recover.
Additionally, I walk 3 times a day, work with PT on a gym machine (a recumbent type bike) for up to 30 minutes a day and I work with OT on walking and balance skills (no more going boom at Byerly's).
Today Joe and I celebrate out 12th year anniversary of our 1st date. We normally play a bit of tennis and have some appetizers at the original restaurant we dated at (now closed). This year, we will spend it in the hospital and celebrate over a strawberry shake from DQ (I hope.)
This is a very informational link for ICU delirium: http://www.icudelirium.org/patients.html
I was basically a perfect storm waiting to happen.
Severe Pain? Check.
Severe Illness? Check.
A crapload of medicines? Check.
Infections? Check.
What lie, lurking, unbeknownst to us was that my recent fall at Byerly's caused a concussion and a brain bleed on top of the head. The Emergency Department had done a CT Scan of my facial bones to make sure there were no fractures; however, a slight bleed on the top of my head was slowly causing pressure increases and a traumatic brain injury.
When I checked in for treatment of pneumonia, there was also a drop in my sodium in my blood: I've been warned that low sodium causes hallucinations; Yes. It most certainly does.
The hallucinations that ensued went something like this: First. I was the victim of a super organized murder for $$$$. I knew that having me in the mix made this plot wildly complicated and guaranteed to succeed. So, after about 7 hours in, I knew it was a success and I "knew" I must be dead. It was a logical conclusion.
However, I couldn't die! I tried and tried and everytime I stopped breathing, my body struggled to start breathing again. My conclusion: They taught us how to live, but no one ever taught us how to die! Makes perfect sense to me.
So I spent 5 days "knowing I was dead" but unable to die.
I was suspicious of everyone and nothing was as it was supposed to be. They never scanned my bracelet; in fact, I didn't have a hospital bracelet. I never got any meds. I never got any food or liquid. I must be dead!
Finally, day 6 of delirium, the fog started to clear. Joe spoke with me and I slowly came around; slowly started figuring out what was going on.
It took about 2 days of clearing the fog and figuring things out, but it started happening.
Now, I am about 95% of my mental capacity and I need to work on physical strength. To that end, I do OT/PT through out the day. I am waiting to do another bone marrow biopsy. They wanted to do it on Friday, but I convinced them that it might be wise, given my recent experiences, to wait, that will get rescheduled for next week. Hopefully, I'll be released from ICU this weekend.
Please enjoy the video link below. One of the best ballads ever. Love Willie Nelson. Love Patsy Cline.
I apologize for my recent absence; I will try to give a brief synopsis. I came into the hospital with severe pneumonia. A few days of being and a couple days of potent drugs, and I was well into icu delirium. A massive scary hallucination ensued with the strangers of Rochester trying to murder me. When I started 'coming around', I thought for days that I was truly dead but didn't know how to die.
I'm working to get stronger, so I'm leaving the story there.
It was time for a visit to the PH clinic. Dr. P. was heading to Italy for some Heart Transplant boondoggle so I needed to rearrange my schedule to get in to see him.
He told me that they had turned down a pair of lungs that matched to me. While that is slightly disheartening, it is also a good thing – that means the process is working – I am at the top of the list for my blood-type. And it is also good to know that they are being very careful about the used parts that they will be putting inside me. There are any number of risk factors that would cause them to turn down a pair of lungs: Drug use, Alcohol abuse, any kind of substance abuse, smoking, even indiscriminate sexual activity is a risk factor that that will cause lungs, or any organs, to be turned away by the transplant team. I find it good to know that they are taking a great deal of care in choosing parts for my body. We really only get one shot at this to get it right.
In the meantime, it is Dr. P.'s job to keep me in as good as shape as possible until the transplant occurs. To that end he has ordered 4 units of Iron Infusions – I sometimes don't absorb iron from my food which leads to Iron deficient anemia (different from low hemoglobin anemia). That coupled with the amount of blood I lost during my recent accident of falling on my face, makes me very tired. I really don't like spending my days sleeping and then sleeping all night, too. Each infusion takes about an hour to complete, but, if I can get those done next week, I should feel a bit more peppy.
Also on the books: The anti-rejection drug that I am taking can cause a nasty, nasty, fungus infection in my lungs. Not a good thing to happen when you are waiting for a transplant. To combat that, I have to sit in a negative airflow room and breathe this nasty smelling drug for an hour. I'd rather breathe the nasty stuff than try to fight a fungus infection.
Lastly. Come back to clinic next week. I'll be seeing the new nurse practitioner on the team, Rhonda. They keep a tight rein on me just to make sure I'm behaving.
If you haven't figured out yet, this is my place where I can be brutally honest. You will hear nothing but the God's honest truth here. This is my place where I can be vulnerable, yet safe, where I can say those things that I, for whatever reason cannot utter out loud to another person. If you are one of those people who are uncomfortable when I tell the full story, you probably should not be reading this blog. I'm not going to change it up so that you are in your comfort zone - that's not the purpose of this blog.
This blog is to raise awareness of what it is like for me to live and fight pulmonary hypertension. Not all patients are as sick as I am, not all of my phriends are in the same place, but we do share each other's stories and revel in our victories and cry with the defeat that each passing phriend represents.
Back when I first 'got sick,' back in October 2011, a friend of mine asked me how I was at the start of the meeting. He knew a bit about my trials, but not the truth, and the automatic reply started coming out of my mouth: "Oh. I'm doing great." And I stopped and that little voice inside my head so "Who are you trying to fool? Your mother (and best friend) had just died and your dad died six months after her and now you have been dealt this diagnoses of a fatal disease that had maybe 2 years to live? And you are going to tell Eric you are doing great?" Well at that moment, I adopted the catch phrase that would be my stock answer: "I'm doing the best I can."
No one wants to listen to your litany of ailments on a daily basis – I never would have got any work done.
So many times what I heard, is "You look great!" It's true, I don't look sick, if I'm not wearing my 02, you'd hardly know there was anything wrong with me. I structured my days so people wouldn't notice my weaknesses: I never walked with anyone anywhere – I would meet them at a meeting, anything to avoid the obvious: I didn't have the energy to walk more than two blocks.
Even today, with all I've been through, I don't look sick. I temporarily look like I've gone a round with Mike Tyson, but still, I look great. I'm the first one to admit it. And yet, when at lunch today when my friend asked me really how I was feeling; how I was doing, I struggle with the words. I don't feel as good as I look. I feel like I'm dying, truth be told. Every minute of every day is a struggle. A struggle to appear normal. A struggle to make it look like everything is okay. And some days, that alone wears me out. I feel like if something doesn't happen in 3 - 6 months, I won't be here to reap the rewards. And I really don't know how to say that out loud. It scares me. It makes me feel vulnerable. And I don't think I would ever be able to admit it to another soul.
I love to cook. I guess it's one of my hobbies, and most nights, I'm cooking dinner for Joe and myself. It's not always a gourmet meal, but I think I do okay in the kitchen. I had a problem though. In planning for the week, I would ask Joe what he would like to eat for dinner in the coming week. His answer was always the same: "Whatever you feel like eating." That's where the problem came in, I didn't feel like eating anything.
Remodulin leaves a funny taste in my mouth: almost a metallic-like taste. Everything I eat tastes 'off.' Nothing tastes as good as I remember it and some of my all time favorites, now turn my stomach to even think of eating them. After months of not eating much, I can't eat much... I try to save the room I have in my stomach for high nutrition items -- not salads and such that Joe should and would prefer to be eating. So planning meals became a real burden every week.
Until. I found this great service -- for me, it was a great service. It was just what I needed and when I needed it. It's called HelloFresh.com and I had a $40 off coupon – how could I go wrong? I decided to go ahead and sign up and give it a try.
They send me 3 meals for 2 people every week. I choose three out of the five offered, so I can have what we like to eat. They send me just enough groceries to prepare that meal – everything is included except for staples like oil, salt and pepper. I need 2 cloves of garlic? I get a little bag with 2 peeled cloves of garlic. It is wonderful. Every week is a new group of recipes with no repeats so far. Everything I've cooked has been great! Not one meal wasted. I even received some shipments while I was in the hospital and I thought they would go to waste, but I put the meat in the freezer and kept the staples in the refrigerator – some of the herbs did not last the 2 weeks, however, every meal from those shipments were used and were great!
This week's meals are: Chicken Saltimbocca with Spinach and Cherry Tomatoes; Pan-seared Salmon with Honeydew-Cucumber Salsa & Watercress Salad; and BBQ-Rubbed Pork Chops with Spicy Plum Relish & Cilantro-Lime Forbidden Rice. Are you hungry yet? Every Wednesday, I choose my meals and every Friday, I receive the fresh ingredients to make 3 meals. The meals are quick and easy: 30 minutes to prepare. The portion sizes are very generous and I usually have some side dishes left over and Joe has never left the table still hungry. If I want to put a hold on my deliveries because I will be in the hospital for a transplant? I block off those delivery weeks and I don't have to worry about them.
I'm not trying to do a commercial for these guys, but if anyone is in a similar position or just needs to change up meal times a bit -- this is a great service to try. They also have meals for 4 people.
I apologize for this commercial interruption. We will now return to our regular blogging momentarily.
For many years, etched in my mother's careful crewel stitchery, that saying hung above her organ. "Life is Fragile. Handle with Prayer." When she died, I gave it to my favorite cousin for safekeeping – it seemed appropriate. But the events of the last few weeks, have brought that message home to me.
The latest in a string of events that have had me carried off by lights and sirens to my home away from home at UMMC: I tripped over the curb going into the my local grocery store (I still love you Byerly's on France), I remember the weight and the momentum of my Oxygen Concentrator slung over my shoulder pushing me and driving me into the pavement. I landed on the left side of my face and I have a fair-sized gash over my left eye and a small gash underneath it: I blame my now broken and useless glasses for the injury and it seems like it was all a perfect storm just waiting to happen. I lost a lot of blood, ended up with about 25 stitches and I look like I went a round with Mike Tyson. Actually, I look a lot like the character Sloth from the movie "Goonies." "Hey, You Gu-yahs!" Alex and I tried to watch Goonies on Netflix last night, but I remembered they recently removed it from their viewing library. Darn.
So God. I get it. Life is fragile. Life is fleeting. I will handle all with prayer. I don't know why I've been chosen and singled out to continue my life with this life-giving transplant, but I will do all in my power to make sure that someone's ultimate sacrifice is not wasted.
It's official.
Insurance approval has come through, the Blue Cross lady made sure I knew that technically they had 10 days to review and approve and just for me, they were turning it around in one day. Thank you BCBS, just think of all the money I've given you over the years. I'm finally getting my payback. As expected, I am high on the list and the list is short. I have very few antibodies that will interfere with organ matching, so I am really believing this will happen quickly. I have my phone with me at all times, fully-charged. My hospital Go bag has been reloaded. I am very ready to view this life event in my rear-view mirror.
TeamVikki Villagers
Thank you to my friend Sara Foster for coining the term - the volunteers for helping me recover from transplant will be known as TeamVikki Villagers. I have had the pleasure of knowing such wonderfully giving and creative people and Sara is just one of many of them. Another giving friend, Sue Herman, is being my trusted co-ordinator for the Villagers, if you've volunteered, I'll be giving your contact info and suggested duties to her. Not only am I learning to ask for help, I'm learning to let go and not be in control of everything. I could do it, but I don't need to. Sue will be doing some sort of contact when the time comes to learn when you can help and what you can help with. I plan on having a celebration for all the Villagers and would-be Villagers when the 3 months is over: It could be an end of summer blast. How exciting!
1Kings 3:5-15 5 In Gibeon the Lord appeared to Solomon in a dream by night: and God said, Ask what I shall give thee. 6 And Solomon said, Thou hast shewed unto thy servant David my father great mercy, according as he walked before thee in truth, and in righteousness, and in uprightness of heart with thee; and thou hast kept for him this great kindness, that thou hast given him a son to sit on his throne, as it is this day. 7 And now, O Lord my God, thou hast made thy servant king instead of David my father: and I am but a little child: I know not how to go out or come in. 8 And thy servant is in the midst of thy people which thou hast chosen, a great people, that cannot be numbered nor counted for multitude. 9 Give therefore thy servant an understanding heart to judge thy people, that I may discern between good and bad: for who is able to judge this thy so great a people? 10 And the speech pleased the Lord, that Solomon had asked this thing. 11 And God said unto him, Because thou hast asked this thing, and hast not asked for thyself long life; neither hast asked riches for thyself, nor hast asked the life of thine enemies; but hast asked for thyself understanding to discern judgment; 12 Behold, I have done according to thy words: lo, I have given thee a wise and an understanding heart; so that there was none like thee before thee, neither after thee shall any arise like unto thee. 13 And I have also given thee that which thou hast not asked, both riches, and honour: so that there shall not be any among the kings like unto thee all thy days. 14 And if thou wilt walk in my ways, to keep my statutes and my commandments, as thy father David did walk, then I will lengthen thy days. 15 And Solomon awoke; and, behold, it was a dream. And he came to Jerusalem, and stood before the ark of the covenant of the Lord, and offered up burnt offerings, and offered peace offerings, and made a feast to all his servants.
I'm not being overly dramatic when I say Dr. P saved my life. When I came to him in April of 2012, I was a walking dead woman. My cardiac output was practically nil. Walking up a flight of stairs or taking the dogs outside left me struggling for breath and I often had syncopal events. I was giving away belongings, that had I know I would be alive today, I never would have parted with.
When I first saw Dr. P. and the rest of my team (Emily and Alethea), they spent two hours talking with me. In addition to other information, they told me how dangerous the syncopal events were and that were I to have another one, I should call 9-1-1 and get straight to the UMMC emergency room. This didn't make sense to me; I had told my pulmonologist about the syncopal events and she didn't seem to think they were serious; therefore, I didn't think they were serious.
So on that morning in April, when Joe was out of town and Alex was staying with me. I'm not sure how I got myself together every morning to get to work, but I could still do that. And. I had two syncopal events; I came to each time lying back on the bed, with Sydney licking my face. I had to take my 11-year-old Rosie to Canine Coach for her last day of training and get myself to the office!
I did successfully negotiate the traffic to Canine Coach and parked outside my office at the U. I spent the morning doing work and didn't have time to even think until lunchtime. I felt guilty for not following Dr. P.'s instructions. So, I did, what I thought was the next best thing: I called into the office and admitted that I had two syncopal events that morning and was now at my desk feeling guilty. Alethea listened patiently and then said: "You need to be seen in the Emergency Department and probably be admitted immediately." And I'm thinking I'm fine. You are being silly. I was the one being silly, for my response to Alethea was: "Okay. Is it ok if I drive myself to the Emergency Department? It's only 5 blocks away." She was speechless, at which point, I said: "Nevermind. I never asked you that question and I don't expect an answer." And then I hobbled out to my car and drove myself to UMMC Emergency Room.
Joe was on his way home; due in around 10pm. They admitted me and moved me to a room on 6C; by the time Joe arrived, I was pretty much 'out of it.' He stayed for a bit and left saying he'd be back early in the morning. The next day things started happening. And it's funny, I don't ever remember being given a choice, although I'm sure I must have signed consent papers somewhere along the way. Before I knew it, I was in interventional radiology getting a PICC line in my right arm. I had no idea what that was for, but they also took me to the cath lab and inserted a Swan-Getz line in my neck: Next stop ICU. The Swan-Getz catheter measured my pressures to see how I was responding to something called Flolan. My hemodynamics responded positively, so that was my new therapy of choice: IV Flolan. Except, really, I don't remember ever being given any other option.
Flolan is horrible. Not only does it have the twenty minute half-life, it has to be cooled at all times, even while it is being pumped into your PICC line. The side effects are horrific. To say I had a headache, would be an understatement. I had a constant headache that morphine didn't even touch. The Swan-Getz line was removed after 2 days and I was released back to 6C, I spent the next two days, curled up like a ball in bed and in total misery. Every fiber of my body ached. The jawpain and headaches were intolerable; finally, after several days of agony, they switched me to Remodulin. Remodulin gives the tolerance of a much longer half-life, and it isn't as strong, so the side effects, while still many, are not as severe.
I learned how to mix my medicine over the next week: What supplies I needed. How to mix. How to get all the air bubbles out of my syringes and cassettes. And was sent home with a big box of my monthly supplies and some vials of Remodulin. Still, I wasn't ever given a choice: Dr. P. said this is for the rest of your life. And I wasn't unhappy. He had saved my life. Had brought me back from the brink of death. And for this, I will forever love the famously bow-tied Dr. P. I'm glad he didn't give me a choice: because I don't think I would have chosen IV therapy.
Retraction: I'm sorry I insulted Joe by denigrating his cooking abilities. He made me a very fine cup of Chicken Noodle Soup for dinner and I very much appreciated it.
I'm going active on the transplant list on Monday. There are only thirteen candidates on the list and my allocation score puts me near the top of the list. I don't expect a long wait. In the meantime, life goes on. Joe will keep working and keep up his travel schedule. If I get 'my call' while he is traveling, Alex will take me to the hospital and Joe will travel to Minneapolis ASAP and will be there before I'm out of surgery.
I will spend about a week in ICU learning to use my new lungs. I expect to spend 2 - 6 weeks on the unit on 6C, in a private room, getting some strength back, making sure my new lungs work, and generally recovering. I will have a feeding tube for three - four weeks and I hope that comes out and I will 'learn to eat' again. I will be doing pulmonary rehab under special monitoring conditions: walking on a treadmill with O2 and an oximeter to make sure I stay oxygenated. I won't have any high pressures in my lungs preventing blood flow and oxygenation of the blood; however, I will probably need O2 for exercise for at least a few weeks.
Then comes the challenge and joy of returning home. I know I will be so happy to get back to my house and some routine. Joe will be over the moon to not have to drive into the city everyday. When I return home the big challenge will be: I cannot be alone, for even 5 minutes, for the first 3 months. I will not be able to drive. I will be able to tend to my basic grooming needs and be independent enough to take care of myself. I plan on being able to cook, to sew on my quilts and take care of my plants. During this time, Joe is going to attempt to continue to work; it should be fairly easy – he works from home in his dungeon most of the time. His traveling is sporadic. But here is where the village comes in.
Joe and I will need some help to get through those 3 months. The poor guy needs a break from me once in a while, to play tennis, workout, to get his work done without worrying about me.
I will need:
Rides to Pulmonary Rehab
Rides to Clinic
Someone to stay with me for short periods during the day so Joe can play tennis or just get away.
Someone to stay overnight in a comfortably appointed suite at Chez Auzenne/Levitch when he must travel.
Alex will be available for overnight stays on occasion; however, he is in school (finally!) and that takes priority for his daytime work.
I will work smarter, not harder, for things that I can: I am accustomed to shopping online for everything from groceries to household supplies to shoes and clothing so that should not be a problem - I will plan to continue that. So I would only need help getting groceries into the house and put away.
Joe's idea of cooking is opening a can of soup. I had to teach him to add water to condensed soups; but I think we have that under control. I love the idea that I will be able to cook again, but I know that will take some time, so we will need some meals that can be easily prepared.
Alex has volunteered to take Sydney for as long as I need him to. She is a wonderful snuggler, but until I am able to take her outside, she will have to stay with him.
And that is the purpose of this blog entry comes: I am doing something that remains very difficult and awkward for me: I am trying to ask for your help. I'd like to have a list of willing volunteers who are able to help me out, what they are willing to commit to, so when I do ask for help, you probably won't say "No." I think that is what one of the main reasons I don't ask for help: I'm afraid you'll say no.
If you are willing and able to commit to anything from a couple of hours every other week or up to an overnight stay on occasion, please let me know. I'd like to compose 'a plan' that I can put in place when I return home. A friend asked if there was someone I trusted to coordinate it all – so if you are out there, I will trust you.
A summary of tasks that I will need assistance with:
Rides to Pulmonary Rehab (Bloomington to Southdale) 3x a week usually around the noon hour.
Rides to clinic (Bloomington to UofM various times and days of week.
Help with groceries (once a week, usually Monday or Tuesday)
Meals for Joe & Vikki
Staying with me for a few hours any day of the week. If you play cribbage, it's a bonus.
An occasional overnight stay in a comfortable suite at Chez Auzenne/Levitch -- I may need help with changing the sheets.
Rides to Lifetime Fitness (106th & Morgan to 98th St & 35W)
Help with laundry
Any other ideas I haven't thought of?
Thanks in advance for your help and support – we couldn't |
do this without you.
