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Brian's (Texas T) wife, Brenda

Anybody have a status update on Brenda?

RB

From Brian's most recent update.
http://www.caringbridge.org/visit/brendathorn

CaringBridge said:
Paperwork, paperwork, and more paperwork

Jan 22, 2014 9:28pm
She is currently on Short Term Disability from Cigna and that will end in March. We've started the process with their Long Term Disability department and all that paperwork was mailed yesterday.

A company called Allsup works for Cigna and they become our agents in the Social Security Disability process. Cigna pays them to do this because the sooner SSDI kicks in, the sooner Cigna can cut back on how much they pay us. If Brenda gets on SSDI and stays there for a two year period she will automatically become eligible for Medicare, regardless of her age at that time. She will then convert from SSDI to regular Social Security benefits at her normal retirement age. A benefit of being on SSDI is that SS will "freeze" her earnings up to that point, so that the gap in earnings from now until retirement age will not count against her.

Tomorrow morning I will drive to the SS office in Mesa and drop off her paperwork. I prefer to do that versus mailing it because I can get them to stamp MY copies of everything I turn in to them, so in the event that they say they didn't get something... nope, here it is.

I've communicated with her SS Claims manager via email several times already and he has been very responsive to my questions and concerns. A govt employee that actually does care? How about that?

Today she was on her own to get to therapy and back home again. She knew the coming home driver from last week so that made it even better for her. I followed along in the car just in case there were any issues, but nothing.

She had an episode getting from the car service to the front door, just like when I brought her home from rehab. She got all wobbly and weak so I got her to the bench we have next to the house and sat her down. She gets cold very easily and tends to wear heavy clothes and today she had on a heavy sweater, but it was probably close to 80 degrees by the time she got out of the car. I think she just tends to overheat very quickly and she will need to remember to shed the sweater/hoodie before walking to the house. She's totally on her own for Friday so we'll see what happens then.

Her brother George and SIL Patsy are coming in tomorrow afternoon, so perhaps one of them will want to go to therapy with her on Friday? I have to return to work this coming Sunday so cross your fingers that all goes well when I'm not here.

Until later...
 
Just a quick update on how things are going. Brenda graduated from Physical Therapy about three weeks ago; now she just has Occupational (hand/eye coordination & strength), Voice (one of her vocal cords has not regained its strength and is not closing properly so her voice is very "airy"), and Speech (Cognitive functions, memory, speaking, writing).

All are progressing well but I would imagine that Speech will continue for the longest period.

Her four month anniversary of the stroke was on the 16th and I think she's made a remarkable recovery.

Her father passed in the early morning of the 20th so we were on a flight late that night arriving at her parent's house in Chicopee MA about 8 am on Friday morning. The viewing was Friday afternoon and she handled it fairly well. I flew back home Sunday morning as I needed to return to work and she will stay with her family for a couple of weeks. We'll figure out how to get her home in the near future.
 
Thanks for the update. Continued prayers for a successful recovery. Sad to her about the loss of Brendas father. KP
 
Latest update from Brian:
CaringBridge said:
A little set-back

44 minutes ago
Lots has been going on since the last journal entry.

Cigna approved her Long Term Disability so the first check will be arriving next week and that will be beneficial. We haven't heard anything back from Social Security yet but it's only been two months and they told us that it will normally take 4-5 months to get an answer.

Brenda's father passed last month so we made a quick flight back to Massachusetts so she could attend the funeral. I only stayed one day and then I flew home to go back to work and she stayed another week or so. She was able to fly home by herself, but only by using the wheelchair service on American Airlines. Without that I don't think she would have been able to navigate to the various gates.

We went to the Vascular Surgeon yesterday to get the word on her pending surgery to her right carotid artery. Unfortunately we did not get the news we wanted. The left artery which was completely cleaned out in October is now 60-80% closed up again. The surgeon is very concerned about this and we are looking at April 8th as the day to address this issue. The right is still stable at 90% blocked but he wants to get back into the left side before it gets any worse.

The downside is that she is already high risk for another stroke or death during/after the operation so we're both on pins and needles. Yes, she knows that this could not have a positive outcome.

If we think positive and assume that everything turns out well, then he will do the right side six weeks later. The downside to doing the right side is that when she has the increased blood flow/pressure to the brain after the operation there is a very real chance that she could have bleeding in the brain again and we would be back to square one (or worse).

So, you're ****** if you do and ****** if you don't. We will go through with the surgeries and hope for the best. I know that everyone that reads this has been very supportive and we both appreciate that very much.

I'll post up more as it becomes known.

Brian
 
Thoughts, hopes, and prayers...
 
Yesterday's Post on CaringBridge

CaringBridge said:
Surgery update

By Brian Thorn — Apr 8, 2014 10:42pm
Up at 4 am, checked-in at 6 am for a scheduled 8 am surgery. An emergency heart surgery took over her surgical suite so she didn't actually get taken to surgery until about 8:45. It was a little after 1 pm when the Dr came out to talk with me, and he let me know that although the results were good they had some issues during the operation.

There was quite a bit of scar tissue on the inside of the artery and he had to take a lot of time to get that cleaned out, then they found a good vein in her neck to use as a patch instead of cutting open her leg and taking a vein from there, but when it came time to close her up they couldn't get the bleeding to stop for a good 45 minutes. They gave her a lot of platelets to help with the clotting and it eventually stopped. He wasn't sure if it was due to the Plavix (last pill was Saturday) or the aspirin (they gave her 4 prior to surgery).

We (me, my mom and my sister) didn't get to see her until about 2:45 pm and they had her in an overflow ICU unit because the regular ICU was fully booked. She was in a huge amount of pain and the nurse was just getting ready to shoot her with some morphine. That took about 15 minutes to really take effect but then she settled down a bit.

They have her on a drug (Neo-something) to increase her blood pressure since it was very low (don't know how low) after the surgery. That bag ran out about 6 pm, just about the same time they raised her bed to allow her to try to eat. Her Blood Pressure crashed at that point, getting as low as 63/37 at one point. She stayed conscious and lucid throughout the episode, and they lowered her head, raised her feet and pushed more of the Neo into her. Then when they were changing over to a new bag of Neo she dropped down into the 77 range again and they raised the amount of the flow of Neo to get her BP back up again. It bounced around a bit, high then low, before finally settling down around 125/55.

Her throat is raw from the breathing tube so even try to swallow a little bit of water from an ice chip is very painful for her. Needless to say, she did not eat any dinner. She has lost 40 pounds since the original surgery so this won't help matters any.

I left a little after 8 and she was resting comfortably at that time. If a room opens up they will move her to ICU tonight or tomorrow morning, or possibly even downgrade her to a regular ward if she does well. The stroke happened 18 hours after the surgery last time so if we can make it through tonight it will be a good sign. She will probably stay Wednesday night as well and then come home on Thursday if all stays well.

Fingers crossed.
 
Today's update

CaringBridge said:
A rough day

By Brian Thorn — 8 hours ago
Up at 5. Stopped by the grocery store and picked up donuts for the nursing staff. At the hospital about 6:30. She was still in the ICU overflow room so that means she got very little sleep again. The surgeon had been in at 6 am and removed the drain tube and apparently it was VERY painful and she woke up a few of the other "guests" with her hollering.

My mom and sister stopped by for a little bit on their way back out of town. My mom has an aorta valve that needs to be replaced and has an appointment about that tomorrow, otherwise she would have stayed longer.

Brenda had eaten practically nothing since Monday night; just a little bite of something here and there, so when she vomited this morning it was all just fluids. They had given her her morning meds and she got sick within probably two minutes but I don't know if it was something in the meds that did it or not. They gave her an anti-nausea shot and that seemed to help quite a bit.

Her blood pressure was staying up without the help of the BP booster, so they took her off of that this morning and then removed the arterial BP monitor as well. They got her to the edge of the bed and then got her standing a little while later, but after she took 1-2 steps she needed to sit back down. I could see that she was going to crash (BTDT) but I let the nurse handle it. She was seeing speckles and spots and then just leaned back and passed out. Her BP had dropped back down to 60/? and she was extremely pale so they got on the phone with the surgeon and got him to authorize two pints of blood.

You could see a big difference after the first pint, then they gave her an iron pill and started the second pint about an hour later. Later today she was able to sit up in bed without any dizziness and I'm hoping we can get her walking tomorrow.

She was scheduled to come home tomorrow, but we'll have to wait and see about that. It's been a long day (10 pm right now) so I'm leaving out a lot of details, but her BP has been up and stable since they gave her the transfusion, and she actually ate some crackers tonight just before I left. The overflow room was half empty so maybe it will stay that way and she'll get some sleep tonight - she needs it.

There is a grandma next door to her (only separated by curtains) that has dementia and other issues that raises a lot of **** with the nurses. Gets out of bed, removes her lines and IVs, etc. They had to restrain her with straps earlier today. If she stays quiet then it's fairly peaceful in there.

For those of you who follow me on FB you got a lot more details/updates than what I'm providing here but that's because I can post that on the spur of the moment and it's a lot easier to document everything that way.

To my Motorcyclist Cafe friends... thank you for all the kind words of support.

Oh, her mom went to the hospital yesterday or today (can't remember) but I did not tell Brenda about it as I didn't want to stress her any more than she already is. Her mom should be going home tomorrow so hopefully she'll be home before Brenda gets released. I've been in contact with most of Brenda's siblings and they are all rooting for her quick recovery. Thank you all.

Alarm is set for 7 in the morning so it's time to hit the sack for tonight.

We too are "rooting for her quick recovery" Brian!!!
 
What a rough journey all the way around. Sending thoughts of strength, healing and goodness for you and Brenda and the whole family!
 
Continuing praying for Brenda and Brian.


From mobile
 
She is HOME.

CaringBridge said:
She's home

By Brian Thorn — 10 minutes ago
We got home about 3 pm today and she's resting in bed. I kept her in the car with the A/C running until I could get everything inside, get the house A/C cranked up, and then bring her in. It was about 97-98 degrees when she got out of the car and I didn't want her to collapse like she did coming home from rehab in November.

Still very sore in her neck and in the crack of her butt. Her skin split right at the tailbone from sitting / sleeping in one position for so long. We have some Aloe cream that goes on her skin every few hours and Hydrocodone for the pain.

Her surgeon recommended home health care and therapy so we'll talk with them tomorrow and they will be out on Saturday for the first visit. I don't know how long that will be for; perhaps a week or two until she is feeling up to going back to her regular therapy. I go back to work on Monday so it will be nice to have someone to check on her, even if it's for a short period of time.

We do a follow-up with her surgeon and her primary care next week, and then we'll see what happens from there. Assuming all goes well with this recovery they will do the right side carotid in six weeks. I was very relieved that there were no stroke symptoms after this operation, but once you've had a stroke you are at high risk for another, so we'll have to sweat that out again in a couple of months.

I usually write more but I'm pretty wiped out and it's hard to think of any details to put down here. I do want to thank everyone for their continued support on here, on email, on forums, in texts, on Facebook, etc. It really does help. Thank you.

Praying for good rest for both of you Brian!
 
A Good Day!!!

CaringBridge said:
A good day

By Brian Thorn — 9 minutes ago
She's only had one pain pill today and that was around 11 am (9 pm the prior night was the last before this one) and that was when the physical therapist was here to check out her range of motion. He'll be back M-W-F next week and the nurse will be here 1 or two days as well.

Her tailbone is still healing but doing better, and she has more mobility in her neck. She got up about 8 this morning and then went back to bed about 3 pm. She got up and made herself something to eat for dinner(!) and then went back to bed again. As long as she's not laying flat on her back it's more comfortable for her in bed than to be sitting on the couch.

I have one more day off with her and then I'm back to work. At this point she is coming along well and there shouldn't be any issues with leaving her alone.

Thank you for all the comments. Ray/Linda, I look forward to both of us getting back down to Tucson at some point and having lunch with the two of you.
heart

Great news Brian!!!
 
Today's update from Brian.

CaringBridge said:
So far, so good.

By Brian Thorn — 30 minutes ago
The bandages came off the other day and the surgeon says the incision looks good. Brenda has to do neck stretching exercises (look up) to keep her neck from getting stiff as the incision continues to heal. There is still a little scabbing from the blood, but it should all be gone in a few days. The more time she spends soaking it in the shower the quicker it will disappear.

We have an ultrasound scheduled in a month to see how it's doing on the inside. He said that it was indeed scar tissue that was building up on the inside of the artery and that she has narrow veins and arteries to begin with so it didn't take much to start clogging her up again.

If the ultrasound results are good then we will start looking at doing the right side toward the end of July.

The home nurse will continue for about another week so that she can continue to check on the wound on Brenda's tailbone. There's no infection, and while still painful for her, it's healing up fairly well.

Monday should be her last day of home physical therapy and then on Wednesday we will return to outpatient therapy at Chandler Hospital. She's only scheduled for a few more sessions of Occupational and I am willing to bet that after her assessment they will discharge her from that.

That leaves Speech (verbal/written/memory/cognitive) and Voice (speaking) therapies. Her voice has gotten worse over the past couple of weeks (more "airy") but I would attribute that to not having any therapy sessions for it. She made good progress just seeing the therapist once a week prior to the most recent operation.

Her stamina is getting better; we went grocery shopping the other day and she walked behind the cart without the cane and without using the electric cart. However, she still does get tired and when she goes to the bedroom to lay down to "watch TV" I will usually check on her in 10-15 minutes or so and she's usually sound asleep.

We had a conference call with Allsup the other day to complete some paperwork for Social Security. They are our representative to SS and they know all the ins and outs to help people get approved for Disability. They said it usually takes three times (two appeals) to get people approved. The money isn't really the main factor for us as her Cigna long term disability takes care of that part, but if they do approve her then she becomes eligible for Medicare two years from when the disability began. That right there will be a big help and save us a lot of money on my future insurance premiums and future medical expenses. Out "out of pocket" deductible is $10,000 and we hit that with only four months into the new year.

If you ever have a need to apply for SS Disability I highly recommend Allsup. Cigna contracts with them to help us with the process because if she gets approved Cigna gets to cut down the amount that they have to pay her so it's in their best interest to help get her approved. And... if you do need their service and use Brenda as a reference we get $100 back from them. :-)

She has a follow-up with her allergist at the end of May and I expect that to be pretty normal. Ever since she starting going to Mayo she has not had any further asthma attacks or shortness of breath or wheezing. They are wonderful and I highly recommend them.

The weight loss has stabilized and she's right at 144-145. She was 185-190 just before the initial surgery. I bought her some Ensure, but she doesn't like the taste which is the primary cause of the weight loss; things just don't taste good to her so she doesn't eat as much of it. (I wish I could turn my taste buds off for a while and cut down on my eating)

There is a Then Came Bronson exhibit in Phoenix tomorrow that I'm going to drag her too. An acquaintance from one of my motorcycle forums will be there from Texas with his replica bike so I'm going up to say hello. Weather is supposed to be crappy with 50% chance of rain and a high of only 75.

Speaking of motorcycles, during the disability interview she was asked what hobbies or activities that she used to participate in that she can't do any more. I made the motion of riding the motorcycle and she told the interviewer that and then began to cry. That was the only thing in an hour long interview that upset her. It got me all teary eyed too. I miss those days.

That's it for now. Thanks for all the positive reinforcements both here and on the forums!
 
Continued prayers for healing coming that way from central Texas. I know I speak for all of us when I say we are all thinking of you and hope and pray for better health and even more positive updates. KP
 
Was good to see you the other night. We will continue praying for both of you! The kids liked seeing a picture of you to jog their memory about who it is we've been praying for ;-)
 
Took her to Buddy Stubbs HD to see the Then Came Bronson display. "Donson", who is a member here brought his Bronson replica bike (along with about a dozen others from around the nation) and Buddy has asked to keep his bike for a year in his museum. Buddy must have several million dollars worth of vintage bikes at the dealership.

Don, explaining the finer points of the Bronson legacy to Brenda. Don was friends with Birney Jarvis, the person upon which the movie/series was based on.
IMG_20140426_120344.jpg



Don's bike is the second one with the orange tank. The red tank was used for the movie but they changed to orange for the series.
IMG_20140426_115544.jpg



A glance into the museum. Note that it is two floors and the bikes are packed in there peg to peg.
IMG_20140426_122654.jpg
 
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CaringBridge said:
One Year Anniversary

By Brian Thorn — 11 hours ago
Today marks one year since Brenda had her stroke and we're spending it in the hospital.


Yesterday morning at 3:30 she fell as she was coming back to bed. I got her into bed and gave her a pain pill because she said her legs hurt. She was stable and BP was good so I went to work for a few hours.


Went I got home she complained of continued pain and it was very hard for her to stand / walk. She didn't want me to call the paramedics so I took her to Urgent Care. Xrays showed no broken bones so they said to just ice it down at home. We stopped at McDonalds on the way home because she had not eaten anything and I got a couple bags of ice at the same time.


When we got home I drove up on the lawn (tore it up) so I could get close to the front door. She got out of the car and only made it a couple of steps before she began feeling "funny" and I sat her on the edge of the planter box. I tried to go in the house to get a chair for her but she was too unstable to leave unattended so I just held onto her.


She said she was seeing "sparkles" so I knew she was going to crash at that point. She said she needed to sleep and I told her to go ahead and she passed out in my arms. I called 911 and got EMS rolling to us. They arrived within just a couple of minutes - we live right around the corner from the station.


As the firefighters arrived she came to and they began their assessments. Her pupils were very constricted which is a sign of dehydration and her BP was 87 / 60. They started an IV and transported her to the hospital.


Her BP climbed to over 180 before settling down to her normal range within a few hours. Pain in her ankle was intense. It would bring her to tears just to shift position in the bed. We arrived at about 1:30 and got into a room at 8:30 last night.


Every test has been negative so far but we are waiting on an ultrasound for both of her carotid arteries and I think she will be looked at by my cardiologist later today. They gave her a pain killer about 4 this morning and she was able to walk down the hallway on a walker with the therapist this morning with minimal pain.


Her neurologist was here just a little bit ago and everything from a neuro standpoint looks good. Personally, I'm leaning towards dehydration causing the low BP and that causing the fainting.


So at this point she's up in a chair watching TV, and she ate breakfast this morning. Hopefully they will discharge her later today.


Her weight is down to 126 which is 60 pounds less than a year ago. Skin and bones. Ordered a bunch of Ensure, it's just a matter of getting her to keep drinking them.

2 Of 2

CaringBridge said:
Not so good news

By Brian Thorn — 19 minutes ago
After getting a clean bill of health from her vascular surgeon just a few weeks ago, an obstruction was found in her left carotid artery today during an ultrasound. She is getting a contrast (dye) Cat Scan as I type this just to confirm the findings of the ultrasound, and if that jives with the first findings she will probably go into surgery tomorrow or the next morning.

The plan this time is to put a stent into place instead of slicing open her neck as the supposition is that it is scar tissue causing the blockage and cutting her open again will not be a long term fix.

They are still supposed to do a heart ultrasound (echo) before any final decisions are made. Her surgeon is one of the partners of the Cardiology office that I go to.

Obviously, she is quite upset about this and has reverted back to the "why me?" mentality, and aside from saying "**** Happens" I just don't have a good response for her.

I'll try to update this again tomorrow as I know more.

Still praying Brian.
 
Prayers and kind thoughts sent.

Thanks Don for the update.

RB
 
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