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RE: Not sure I'd normally post this....Last update pg 8
My heart is broken as my Sharon and dear wife of almost 48 yrs passed away this past Wednesday morning. She is where there is no pain or suffering and of that I am grateful. I am missing her so very much.
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avan
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11/13/11 05:02pm |
Full-time RVing
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RE: Not sure I'd normally post this....Last update pg 8
I really thought that my last post would be my last post on this thread and on the forum though I thought maybe I'd sneak back every month or two for a look see. Our focus of course had changed from RVing and with our finally returning to our new home town, it seemed that what was left in our immediate future was to nutritionally strengthen her up from her malnutrition, mentioned earlier, and physically strengthen her up via some rehab and then make the move to our home.
This past Tues or Weds, I got a call at 2 am from the nursing/rehab center saying that they were sending her to the ER cause she was coughing up blood. Thank goodness we were out of N. VA so she wasn't sent back to the VA hospital. By the time I got to the ER they had already determined that she had just had a bloody nose, probably from the O2/cannula and in her sleep, the blood had just drained down her throat and then was coughed back up. Though her cardio has always been great, she was tachy so the doc wanted to admit her for 24 hr observation. While there, her normal critical care/pulmonologist saw her and ordered a CT which came back showing fluid on the lung. This has happened before and with her very recent pneumonias, it wasn't a 'big deal'. They decided to do a needle aspiration of the fluid and they removed nearly a liter.
Friday morning I arrived at the hospital and there already was a doctor in her room. The doctor advised us that a culture of the fluid revealed a significant presence of small cell cancer. I had never heard of the term but it was explained as a 2 stage, very aggressive cancer, probably just started. Its stage was graded as extensive and therefore not realistically treatable with surgery or radiation. Without chemo, the doctor said her life would probably be measured in weeks and with chemo, the average would be a year. Chemo started that same afternoon and she completed her third treatment today and now she'll have 18 days 'off' before the next cycle starts - assuming she remains strong enough. It is also complicated by an infection that has returned and which is resistant to all antibiotics save 3 in a single group. Hopefully the antibiotics will be strong enough to take out the 'bug' without assistance from her depleted immune system.
We are devastated; so profoundly sad. After 22 surgeries in her 14 yrs of FTing, she's proven herself to be tough but this seems, right now like an insurmountable kick in the gut. She's only had a week so far living in her new home which we moved into in early June and my intent is to now get her home as fast as humanly possible. Towards that end, I picked up her power chair and lift and personal belongings today from the nursing/rehab center and brought it all home. Will rearrange our bedroom to accommodate a hospital bed and on good days I'm sure we will spend a lot of time remembering our great years of traveling.
May God bless us and hold us in His hands.
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avan
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10/09/11 08:26pm |
Full-time RVing
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RE: Not sure I'd normally post this....Last update pg 8
Just a little update. Today it is 3 months since we first got turned away from Inova FairOaks Hospital's ER with a "no problem, just take her home, she could stop the tremors and spasms in her legs if she just wanted to" etc. diagnosis. Since my last post she has been sent, twice, to the ER of the Inova system from the skilled nursing facility. While at this 'wonderful' level 1 trauma center, she has acquired a stage 4 pressure sore and 2 separate klebsellia, multi drug resistant infections - both of which are pretty much only acquired in ICU. Of the past month in the hospital, she spent 15 days in ICU and they neglected to feed her for 8 of those days (actually 7 days and their machine to do the 'catch up' feeding via feeding tube malfunctioned for 12 hours of the 8th day).
The good news is that I'm posting from the Amtrak Auto Train on my way from DC to mid FL. The hospital (as a result of a finding that the hospital was not a safe place for her) is paying for her charter med flight back to Naples where I'll join her tomorrow. She probably is overhead with my daughter as I write this. This has got to be one of the happiest days in our lives as we escape tht hospital's clutches.
Thank you all for your prayers, well wishes and PMs.
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avan
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09/27/11 04:03pm |
Full-time RVing
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RE: RV Park/Resort SW Florida
Decent enough park. Pretty heavy tree canopy. Close in to Naples. Adjacent to the Naples Airport which I assume you knew by using google or other mapping prgms - but the Naples Airport isn't busy like like Hartsfield :B
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avan
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08/25/11 09:16am |
RV Parks, National Parks, State Campgrounds & More
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RE: I-70 or us 50 through colorado
Whichever way, enjoy the trip with your nephew and niece :B
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avan
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08/20/11 03:11pm |
Roads and Routes
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RE: Not sure I'd normally post this....Last update pg 8
Hi Dale. Just got back to my daughter's house after spending the day with DW. She got transferred out of Nat'l Rehab Hosp on Friday to a skilled nursing center. They sure worked her butt off at NRH. I'd generally arrive about 10 - 10:30 am and she'd be in therapy already. She'd have a solid 3 hours each day plus at least another hour of video or group sessions dealing with spinal cord injuries. Outside of lunch, it was always 3:30 - 4:00 pm before 'the day' was over. Not sure who was more tired, me or her (it was her) as I tried to participate in everything.
She is still paralyzed from mid chest down. Once in great while, she can feel a touch on her leg or something. She's maintained her range of motion through a routine of leg movements that they've taught me. They also had a stationary bike that would electrically move her legs. Apparently standing is good for the bones etc. so they have a machine that they can hook her up to and with a sling they can stand her up in 10 minute increments.
Her RA has, over the years, damaged her shoulders, damaged one wrist such that it was fused and blew out the tendons on the other wrist/hand. She had surgery twice this past winter to try to repair the tendons but both failed. Consequently, though her arms are strong, she is not much help in using her arms for pushing a wheel chair or, most importantly, helping transfer her weight across a transfer board from bed to wheelchair etc. I can manually transfer her but without much help, most of her weight goes on the caregiver and that is difficult. I've become very adept though in putting her in a sling and with a lift, moving her from chair to bed etc. I bought an electric lift last week.
Due to medicines taken over the years for RA, she has incredibly fragile skin and easily develops pressure sores most anywhere. NRH mapped her behind, using a cloth grid of about 1300 1/4 inch squares. Each square has an electrode in it which is then connected to a computer. With the lift, she is placed on various wheel chair seat cushions (some with like a 1000 semi adjustable air chambers, others with gel etc) and the computer reads the areas of pressure and how much. The cushions are adjusted to find the minimum pressure transfer for each with the best cushion ordered. Very impressive (and time consuming). The seat cushions run between $450 and $600!
I had originally been told that a power wheel chair takes 2-3 months to get. After research, I found that wasn't true - it takes that long for Medicare to approve the payment and the wheelchair vendors don't build a customized chair on credit. The patient has to be fitted for the chair by the vendor per Medicare regs. So I had a vendor from FL fly up last week to DC and between NRH and the vendor, they agreed on each component and the measurements for same. The chair will elevate and the seat/back will tilt back till the legs are over the head. This has to be done every 15 minutes for 15 seconds or at least every 30 minutes for 30 seconds. It transfers the weight from one's bottom to the back - in effect you're 'sitting' on your back - which allows ones behind skin to breathe and forestall pressure sores. I wrote the vendor a check - who'd a thought that a wheelchair would cost over $21,000 at Medicare's discounted rate - and it's being built now and will be transported back to DC by the end of this week (with the lift). I should get the reimbursement from Medicare in a couple of months.
I also am getting a mobility van from FL and it will be used to transport the chair and lift here.
The most amazing thing so far is the progress they've made with her balance. I had never thought of it before, but when you're paralyzed, the connection to the brain from your trunk is lost so there's no signal being sent to the brain saying "I'm vertical" or I'm starting to lean forward, backward or sideways. So sitting is not possible until some new skills are taught - like how to react fast enough and in the right way whey your eyes tell you that you're starting to fall from a sitting position. Sitting is still a tentative activity for her but she can sit by herself using a lot of concentration. That should continue to improve.
Friday was kind of a 'down' day for her as she left NRH for a downgrade in treatment etc. But the new place is nice and even though it was the weekend, we're encouraged that she got some therapy. Don't know how long she needs to stay there but her pressure sores have to get better before I can drive her back to FL and she needs to be able to tolerate 3 or 4 hours of road travel per day. We are anxious to get back as we really only lived in our new home for less than 10 days and we've sort of forgotten a lot. I've blown up some pix of the place and of the aerial in my sig and have those taped to the walls with the word "GOAL" printed under them.
We are so appreciative of the cards and emails we've gotten from friends and family around the country including many of the posts and PMs gotten through this forum.
And a word of warning - next time someone posts that they are going to go without insurance, or use a 'homemade' medical savings account or, as some have suggested, rely on the largess of a church group for medical expenses, be aware that a catastrophic incident is enormously expensive.
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avan
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08/14/11 07:12pm |
Full-time RVing
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RE: RV Park/Resort SW Florida
Well, I'll assume that OP has done enough prior research to understand what the term 'reasonable' means when joined with 'SW FL' and the height of the season and recommend Silver Lakes Golf & RV Resort in Naples. I realize definitions vary but I wouldn't place Cortez or Bushnell in SW FL.
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avan
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08/14/11 07:45am |
RV Parks, National Parks, State Campgrounds & More
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RE: Disabled RV Toilet
In addition to installing the highest RV toilet we could get, we had our RV mfr raise the floor under the toilet by 3" before installing the ceramic tile. It drops right back down to normal floor height about 2" in front of the toilet base. Looks normal, like it was built that way, 'cause it was.
when
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avan
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08/13/11 03:35pm |
RVing with Disabilities and General Health Issues
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RE: Trailersaver Air Hitch
My TS had an adjustable 3" rise and I would always adjust it so that the hitch was midway between the top and bottom of the travel. If yours would be the same, then you'd need to adjust your pin for the 2" plus another 1.5" for normal level travel.
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avan
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08/09/11 12:04pm |
Fifth-Wheels
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RE: Need advice for Wash DC and NYC
Dulles is in Northern Virginia. I don't know when they are planning on getting in to the DC area, but there is a shuttle that goes from the airport and hooks up with the metro system. With a 38 foot vehicle a you probably want Cherry Hill, as it will cut some time off of your trip northward. Going up 95 on a Friday afternoon in the summer is no fun as you are competing with beach traffic the whole way. If they aren't renting a car at the airport, I recommend taking the shuttle to the metro and taking metro to cherry hill. The traffic going around the beltway can be a pain, especially if you hit it at rush hour.
If you are really ambitious you can do the mall in a day. You have to pick your musueums and not linger. There are tour buses that have preset stops and that will help. The parking by the mall is very expensive ($20 a day) and not very close to the mall. So, metro is a better bet for getting there.
X2
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avan
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08/03/11 07:55pm |
RV Parks, National Parks, State Campgrounds & More
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RE: scooter vs power chair pro/con
My daughter has one of these. It is very lightweight and it folds, like a Dahon bike, into a bag. It is very well built and has a wide stable stance. Good brakes and you use your legs to backup since it has no reverse.
No comparison to DW's power chair.
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avan
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07/27/11 11:17am |
RVing with Disabilities and General Health Issues
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RE: Not sure I'd normally post this....Last update pg 8
Steve - thanx for the links - especially for the forums! Cliff, thanx for your well wishes. R U still on track for FTing yet this yr or next (I forget) or did that get delayed by M's promotion? Cement business picking up at all?
My big news and reason for returning to the forum - TRANSFER TO THE ACUTE REHAB HOSPITAL HAPPENED TODAY!! Can you tell we're excited? Only 30-60 more days till we can return home to FL!!
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avan
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07/21/11 09:54pm |
Full-time RVing
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RE: 30 days of full timing
:B :B :B
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avan
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07/19/11 02:43pm |
Full-time RVing
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RE: Buy an RV lot?
Would not own anything in a membership park. We did fulltime everywhere for over 14 yrs until giving it up in April.
OP, to answer one of your questions, "waste of money?", our answer is No.
In fact we bought our 1st deeded lot in SE FL nearly 40 yrs ago. It was a waterfront lot in what was then an Outdoor Resorts of America new development. We sold after 5 yrs when our kids were a bit older and we could no longer take them out of school for 3 weeks. Our sales price was 6.5 times our purchase price. I no longer remember the maint. fees.
14 yrs ago when we went FT, we bought another deeded lot in SE FL and owned it for 5 yrs and sold it for just over triple our acquisition cost. A year later we bought our 3rd deeded lot in SW FL (Naples) and despite depressed prices sold it in 8 days for cash at exactly double our acquisition cost. HOA fees (reserves, activities, landscaping, maintenance, water, cable etc) ran $540/qtr.
Though we FT'd, we used Naples as a 'body shop'. DW is disabled and the beach in the winter wasn't an all bad place to recuperate from frequent surgeries and we could maintain relationships with specialists there who are used to having patients who are only around for 6 months or less, per year. Some pix of our former winter digs are linked in my sig.
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avan
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07/18/11 05:17pm |
Full-time RVing
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RE: Not sure I'd normally post this....Last update pg 8
Dale - so nice to hear from you again. It so happens we were in VA to visit with our kids and the munchkins. Usually it doesn't bother me when she has surgery or something and we're in Podunk but we've never considered new hips or fused wrist or rods inserted in the spine as being 'game changers'. This seems more like a game changer though I realize that life goes on and many people have suffered the same injury and far far worse. But anyway, we were (and I am) staying with our oldest attorney daughter and we're within 10 miles of our other daughter and both have been wonderful. We are at the hospital all day and tag team each other sitting in the ICU etc. so as family we can get relief.
You know that I'm a record keeper and I made it my business to talk someone in the nurses station into photocopying the all the doctors' handwritten notes. Pretty revealing how they didn't believe that she was in trouble, that the leg and body spasms were just something that she could stop doing if she wanted etc. Will be interesting to see if the official records from the records department conform. The finger pointing has officially and definitely started.
DW was pretty much sedated all day today. Her WBC is 26,000 so she's pretty sick in addition to the injury. Unfortunately, the several days reaction to the "bad" drug masked any sepsis symptoms until full blown. I think tomorrow we may find out what the culture results are but based on numerous prior bouts with sepsis, I quite sure I can predict the culprit. Also asked them to run TS3/TS4 lab tests a couple of days ago and those were very low so that hasn't helped either.
Keep having fun in your great FTing lifestyle and enjoy every minute.
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avan
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07/11/11 08:41pm |
Full-time RVing
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RE: Not sure I'd normally post this....Last update pg 8
Yeah, they look at you with this "I went to Harvard and you're wearing shorts and a T shirt look". I am anal about keeping records on her with nearly 5 gig of records CTs angiograms,PFTs, surgical report etc on it. Amongst it is a complete current list of all her meds - 25 to be exact - her specialists with their phone #s and fax #s and a note that they welcome calls and a synopsis of her medical condition and surgeries. I keep this up to date and always carry a half dozen printed copies just in case something happens and I need to provide info.
I had them give me her chart yesterday and this list is on the top. But I find that she's getting some meds that she no longer takes. Found the reason deeper in the chart. They have transcribed a list of meds that was in a surgical report, written by a doctor from well over a year ago rather than use a currently dated list provided by family :( who happens to wear a Tshirt. Not the first time either.
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avan
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07/11/11 06:46am |
Full-time RVing
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RE: Not sure I'd normally post this....Last update pg 8
Update. DW is still not at the Rehab hospital and still has not recovered any lost functionality. Without my knowledge she was put on a neuropathy drug (Lyrica) that she'd been on some years ago with disastrous side effects - confusion, hallucinations, delirium etc. I found out after the 1st dose and advised them of her prior reaction. They told me what all good it does and I told them I didn't want that for her and that if they continued, it was at their peril. They continued and the side effects deepened and deepened. Nonetheless, they continued to give her one more dose even after they called me at 3 am to come down and try to reduce her distress. They then put her on a drug to try to reduce these side effects which also has the same listed side effects. Short story, she's back in ICU this afternoon, septic, was on a BiPAP, now intubated with more normal breathing and less distress with a central line for dopamine and aterial line to more accurately monitor systems.
Do feel more encouraged tonight after having seen a more peaceful DW after these procedures.
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avan
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07/10/11 08:09pm |
Full-time RVing
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RE: snowbirding in sothern fl.
We just sold our lot in Silver Lakes Golf & RV park in Naples and agree with prior poster that it is a beautiful park with lots of amenities and a varied, friendly social schedule in season. Some pix are linked in my sig. Adjacent to Silver Lakes is Pelican Lake which is also upscale but without the golf course.
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avan
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07/08/11 09:17am |
Snowbirds
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RE: I am back
Glad to hear your improved news!!!! Did they insert a inferior vena cava filter while they were at it? Life flights are no fun for either the patient or the better half left behind watching you depart. Glad you're back.
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avan
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07/08/11 09:12am |
Full-time RVing
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RE: Not sure I'd normally post this....Last update pg 8
I just returned to this board after a couple of days. Those of you whose posts are still here, you all are wonderful and I thank you. To the mod who removed the thorn, I thank you. To the thorn who denied my remarks, not so much, and I refer you here. and to all, for introducing rancor to the thread, I apologize - not an excuse but there's been a little stress lately.
As an update to my friends here, she has not regained any function from the mid chest down. There have been 2 instances of a slight spasm - 1 in each leg and a slight response to a very hard neuro exam on the bottom of 1 foot so there may be a slight electrical connection on which to build - or maybe not. I will have her transferred to National Rehabilitation Hospital to start working on her rehab. They have a stellar reputation, have all the right equipment and have considerable experience with her underlying condition - albeit a lousy location in downtown DC. She's been through 20 surgeries, most major, in our 14 yrs on the road and is a hard worker and tough so I know she'll give it all she's got.
We both are feeling cheery and quite blessed that she's still with us.
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avan
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07/06/11 01:35pm |
Full-time RVing
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