Latest update, not so good news.

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Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 9/30/2013 10:54 PM (GMT -6)   
Guess luck isn't with me anymore sad sad I thought that things were going to go smoothly with this operation, cause I didn't have any issues with having to stay on the vent. Boy was I WRONG, things have gone from bad to terrible in just a few hours.

I think I mentioned that I wasn't doing to well and was starting to have more pain at the incision site. This morning I was hurting so bad, I had to call my surgeon and let him know about how I was doing. The nurse on the same day surgery ward, had discharged me w/o giving me my discharge instructions. I've been kinda flying by the seat of my pants ever since last Wednesday night.

Well, my surgeons resident first called and discussed all my symptoms with her and she felt that we would wait and see if I worsened over the next 24-36 hours. The incision was looking very very red and was hurting at a 8/10 all the time. It has been really hot to the touch and spotting some blood around the stitches. I agreed and hung up with her, about 15 minutes later my surgeons admin specialist called me and said that he wanted me to come into the clinic and see them after I finished up my appt with my cardiologist.

I get down to the medical center and barely make seeing my cardiologist. He fit me in, as he is on duty taking care of the inpatients at this time. I almost left cause my surgeon wanted to see me at 2:30. Asked if I could come back and he said you wait and see me now, or it will be another month before I can see you again.

So, I waited for him, took me back to his office at 2:10. He listened to my heart and lungs, he looked over my echo and talked with my about what's been going on. He basically said I'm still having issues with chronic pericarditis and that even attempting to taper my steroids is making this so much harder. He also mentioned that I've got a problem not when my heart constricts but when it releases.

He's not sure what to do now. There is one option but as we all know I'm not a good surgery candidate but he's going to contact some fellow colleagues of his at Mayo Clinic, and Johns Hopkins. One option would be to scrape off my pericardium from my heart. BIG TIME SCARY STUFF HERE.

Until he speaks with his friends, and does some research I'm to take it easy. He asked how I sleep in bed, I told him up on four pillows or in my recliner. He offered to order a hospital bed for me, I declined at this moment, I'm not sure what I want to do yet. As I mentioned in my other post we've got a new bed coming, I guess I could try to get a frame that lifts the head of the bed, but they cost like $3400.00 He said I'm certain I can't get you a double hospital bed so your husband can sleep with you, but I can get a you a single one. I'm now in a holding pattern with my heart issues, I sure hate this stupid disease. It's affecting so many of my organs, I have no QOL and tonight I'm really wishing I didn't have to go on.

Off I race to my surgeons office, get over there about 2:40. The resident and medical student come into the room and say sorry for the confusion. Ask me to get undressed and let them take a look at the incision. I do and they come back into the room and take a peak. She sends the medical student out of the room to get the team of residents that worked with my surgeon last week. They all come in and look at the incision, then the senior resident goes to find the chief fellow. By this time I find out the staff surgeon isn't there and he won't be able to see me. That's why the chief fellow would be coming to look at me.

Once he gets into the room and looks at the incision, he says to me "well we're not surprised to see this at all", what I say. He told me that my incision has opened up I only had maybe 2 stitches left together and some surgical glue over that. Basically, all my stitches have blown out of the incision and it's wide open with out anything holding the sides of the skin together anymore. He said with me being on steroids as long as I have and being so immune suppressed they weren't surprised at all. I did this with my colon surgery 21 days post op too, I never gave it a thought.

They never restitch the incision at this point. I'm to keep it clean and dry, keep it dressed and just wait for it to heal from the inside out. Told me it will take longer in me since I have no immune system. I'm to watch for any signs of infection, I'm to rest, rest, and rest some more. Eat plenty of good protein and stay well hydrated. I will follow up with them on Monday the 7th unless I get worse, especially start running a fever. I never even consider this, they didn't mention it to me and I didn't think one thing about it. I've got some blood oozing from the incision but it's not open to deep, so that's a good thing.

It's looking like the government will shut down tonight, so I'm guessing my spouse will be home early tomorrow, so he can help change dressings and prepare meals for me. It just seems like I can never ever get a stinking break, no matter how hard I try. It took over 8 weeks for my incision from my colon surgery to heal , but that opening was a lot worse, I ended up inpatient for over 1 week because it opened up so deeply.

I'm going to ask for some prayers please and positive healing energy sent my way. I'm in pain and I've been told that I may need 3 times the amount I normally take for BT pain medications. They contacted my Primary care doctor to let her know that I may run out early and need more. She's the only Doctor that prescribe controlled substances for me outpatient. I'll keep you all updated as my long days pass by. I thank you all in advance for your prayers and positive energy.

Hugs,
Barbara
DX- RA, Lupus, Fibro, LGL Leukemia, Pulmonary Hypertension, Bells Palsy, Gastroparsis, Blood Clots, Glaucoma, Chronic Pericarditis & Pleurisy, Severe Anemia. Way to many medications to list.

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 9/30/2013 11:37 PM (GMT -6)   
Oh, so sorry, Barbara!
You've had a rough day. It's good your husband will be able to help out. Not good about the reason he's available though.
Please take it easy and follow the doctor's advice.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, and Allergies

When life throws you lemons....
Pick them up and throw them right back at them! :))

UserANONYMOUS
Forum Moderator


Date Joined May 2011
Total Posts : 4497
   Posted 10/1/2013 7:00 AM (GMT -6)   
Hey Barbara,

You had a very long day. Lots of running around at the hospital. I'm sorry it was rough and also for everything that you're going through.
Please take it easy and get your rest. Hang in there. We're here for you.

I'm keeping you in my prayers and thoughts.

Hope you get some relief soon. I hope your incision heals as well.

UA
Depression, Borderline Personality Disorder.
Chronic Pain - Cervical Kyphosis, Cervical Spondylosis, Thoracic Scoliosis.

oreo11
Regular Member


Date Joined Feb 2011
Total Posts : 399
   Posted 10/1/2013 8:23 PM (GMT -6)   
 
Hi Barbara,
 
       I am taking the sparkles from the sunlight that graces the redwood trees outside my office window and sending them on gentle wind gusts to the east to let you know that I am thinking about you.  An embrace and hug from this forest landscape to ease both the physical and emotional pain.  I will keep you close in my thoughts.
 
Love, Laura

DianeB
Veteran Member


Date Joined May 2013
Total Posts : 1352
   Posted 10/1/2013 10:20 PM (GMT -6)   
Barbara
Thnx for posting update.. Know you are exhausted, poor thing. When you have had a chance to relax a bit, please take a few moments to count your blessings. To start with, a husband who cares for & about you.

Praying for so many whose lives are in chaos due to 'shut down' .. I know several folks at FGGM who are now on 'unpaid vacation'.

perhaps the timing will provide opportunity for husband to wait on you 'hand & foot' (smile). you do have the 'luxury' of having him to be there for you.

You are in my prayers
Diane

Herniated cervical discs & other disc / spine issues, Arthritis,
Injuries &/or pain to/in shoulders, elbows, wrists, knees, legs, ankles
Fibro / myofascial pain, neuralgia, neuritis
Fentanyl, oxocodone & muscle relaxers - 1,000 Vit D & multiple daily vit

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 10/2/2013 8:50 AM (GMT -6)   
I'm doing much better this morning Yes, I know I have many things to be thankful for. It's hard though when it seems like a black cloud drifts overhead. Well, hubby was given his furlough letter yesterday.

Who knows how long they will be off. I sure hope it will not take to long. The incision looks pretty good, hubby is helpIng with it. Getting rest and yummy food. Hopefully, by this time next week I'll feel a whole lot better.

Today will be my first day w/o having to use crutches. See the orthro doc on the 17th hope he says I can take off this stupid boot off.

Well that's the update here. Hope you all have low pain levels and have a great day.

Hugs,
Barbara
DX- RA, Lupus, Fibro, LGL Leukemia, Pulmonary Hypertension, Bells Palsy, Gastroparsis, Blood Clots, Glaucoma, Chronic Pericarditis & Pleurisy, Severe Anemia. Way to many medications to list.

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7723
   Posted 10/2/2013 10:15 AM (GMT -6)   
Glad you are feeling a bit better this morning! Good that hubby is taking care of you & making some good food besides!

Don't overdue walking without crutches...slow and steady wins the race.
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 10/3/2013 12:31 AM (GMT -6)   
Lynn thanks for the reminder nono nono I wouldn't just start off walking w/o anything. Plus, you know my lecture person is watching me like a hawk. LOL. He seems NEVER to miss a thing, I've already decided I'm not to big on this furlough thing.

I now remember WHY I INSISTED he get a job, when he retired in 2007. Not to sure I'm up to having him under foot for a long period of time LOL. Sure hope they work things out and he goes back to work soon. The one really nice thing though, is I'll get homemade pancakes for breakfast.

I did pretty well today, walking, w/o the crutches. I never did totally walk alone w/o any type of device, except for in our bedroom bathroom. Every where else I went today I took my walker with me. My cardiologist called and asked if I could make it into the clinic at 8:00 on Monday for another Echo.

Well, I've been up since 6:00 am and I'm feeling really sleepy all of a sudden. So I'm off to bed, hope you and everyone else here had a good day. I hope you didn't have to much pain from anything and I really hope that your weather was great like mine was. Have a good nights sleep and I'll catch you tomorrow.

Hugs,
Barbara
DX- RA, Lupus, Fibro, LGL Leukemia, Pulmonary Hypertension, Bells Palsy, Gastroparsis, Blood Clots, Glaucoma, Chronic Pericarditis & Pleurisy, Severe Anemia. Way to many medications to list.

momtofourangels
Veteran Member


Date Joined Apr 2010
Total Posts : 2265
   Posted 10/3/2013 6:30 PM (GMT -6)   
Hi Barbara I'm so glad that you're feeling a little better today. I'm really sorry that your incisions came loose though. I will keep you in my thoughts and prayers. I also hope that your appointment goes well on Monday. Take care and get your rest my friend.

love and hugs
Loretta
Dx: osteoarthritis, bursitis in left hip, Osteoarthrits in right hip, compression fracture in thoracic spine due to falling on frozen ground March 2001 , ddd, spinal stenosis, bone spurs, osteoarthritis in spine, osteoarthritis in both knees
Meds: Fentanyl patch, oxycodone, otc: BenGay, Tylenol Arthritis on occasion

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 10/3/2013 9:26 PM (GMT -6)   
Just read all your updates, Barb. What can I say? But wow, you are amazing in how you keep bouncing back despite all these horrible things that happen with you, and all that you face.

As usual, I am here for you, thinking of you, and praying for you.

David
Age: 60, 56 at PC dx, PSA 16.3
3rd Biopsy: 9/8 7 of 7 Positive, 40-90%, 4+3
Open RP: 11/8, Catheter in 63 days
Path Rpt: 3+4, pT2c, 42g, 20% tumor, 1 pos margin
Incontinence & ED: None
Surgery Failed, recurrence within 9 months
Salvage Radiation 10/9-11/9, SRT failed within 9 months, PSA: Too High
Spent total of 1 ½ years on 21 catheters, Ileal Conduit Surgery 9/10,
7 other PC-related surgeries 2009-2012

Lindaloo
Veteran Member


Date Joined Sep 2006
Total Posts : 1713
   Posted 10/4/2013 1:16 AM (GMT -6)   
Barb,
 
Hang in there, girlfriend.  Keep an eye on signs and symptoms of infection; remember the steroids can mask an infection.  Keep your spirits up.  Bill will be back to work soon and the government will be back to it's annoying self soon!!  LOL!!!
 
Try not to let them get too crazy with the heart stuff either.  I have a feeling you are going to be fine with that too.
 
May the Lord bless you.  May He send the angels to come and continue to guard you and guide you in all you do and all decisions  you face.
 
Remember how many of us love you so much too.
 
I will be reading on here to keep abreast of your daily progress.  Stay strong, Barbara.
 
Linda
Moderator in Chronic Pain and Fibromyalgia Forums.

Believe in yourself. Be kind to fellow humans and animals. Take time to smell the flowers and the coffee.

And by all means, when you are down, ask me for help. I will be there.


Linda

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 10/4/2013 11:21 PM (GMT -6)   
Linda, David, Loretta:

Thanks for checking up on me and your much appreciated prayers. I certainly will take them that's for sure. I hope that you all had a good day today. It's now midnight so I hope that you're all in bed sleeping well. I'm still up as I'm having a fair amount of pain in my back and around my incision.

Pretty much overdid it a bit I guess, Bill has worked so hard to try to keep our home clean like I keep it. Well, it's not exactly to my standards, and I started working on the rooms. I vowed I'd only do 2 a day LOL. Yesterday, was our master bath and our bedroom.

Today, I went after the family room and the entrance hallway. Also, did two loads of laundry, now I didn't carry them that's not allowed. I did however, put them into the washer/dryer and folded them. I only dusted and picked up things, Bill did all the vacuuming of the floors.

Tomorrow if my back isn't to bad, I'll clean the guest bathroom and pick up our formal dining room. I promise I'll not go overboard but man it's hard not to when it's not in the condition I'm used to.

Pretty much just hanging out with Bill, still no word as to when he'll be returning to work. I have to say I'm really feeling bad for the young vets who have been injured in Afghanistan or Iraq and have filed for VA benefits but haven't been approved yet. Their claims aren't being processed as well as the folks who've applied for SSDI/SSI those claims aren't being processed either.

I was starting to worry a bit about if I'd get my SSDI next month and would Bill get his military retirement. He received notification that retirement benefits are paid separate from the budget that everyone is fighting over and they say SSDI/SSI will also continue to be paid. Whew, I was about to start nagging Bill to start looking for a job.

Otherwise, that's all that's happening here. I've got several appts on Monday with Cardiology, GYN/ONC, and then I'm off to get some blood work done and an echo done. I'll have PT twice next week and a therapy session on Wednesday. So kinda a busy week again for me.

I hope that everyone has a great weekend and can enjoy the weather. I hope we all have nice weather and feel up to doing something that we enjoy. I pray that our pain levels stay low and that we just have a good weekend.

Hugs,
Barbara
DX- RA, Lupus, Fibro, LGL Leukemia, Pulmonary Hypertension, Bells Palsy, Gastroparsis, Blood Clots, Glaucoma, Chronic Pericarditis & Pleurisy, Severe Anemia. Way to many medications to list.

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 10/5/2013 12:39 AM (GMT -6)   
Why are you doing all that bending with a wound that is barely holding? Tsk-tsk!
I've always heard that after stomach surgery you are not supposed to lift anything over 5 lbs for six weeks. Also avoid bending over during that time.

You're going to burst something wide open. Please be careful.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, Allergies, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 10/5/2013 8:30 PM (GMT -6)   
Barb,

Sounds from what you are able to do, and doing, you are definitely on the mend. Please don't overdo it. You can't afford a set back or relapse at this point. Your house will be there, even if you aren't up to snuff on doing everything.

There shouldn't be any delays with SS or SSDI with all this mess going on in DC. Hopefully it will stay that way for us that depend on it.

Make sure you get plenty of rest.

I overdid it today. Went to flea market with my youngest son, we hadn't done anything together in a good while. It was way too much walking in the heat for me, nearly passed out several times, and finally had to go sit in the car and wait on him. Then later, after putting it off for months, I had to hook up our travel trailer to the truck, and move and park it somewhere out of the way instead of the middle of the back yard. No one was around to help me, so that really wore out but good.

Need to take it easy this week, as it's next Saturday that we leave for Charleston to go on our cruise. I am looking forward to being at sea for 5 days and not having to do anything. No errands, no housework, no yard work, plan to get plenty of rest and good eating. Weather suppose to be nice in the Bahamas.

I will continue to watch for your updates here, my good pain buddy. But when we leave on the 12th, will be out of computer and phone reach until the 19th or 20th.

David
Age: 60, 56 at PC dx, PSA 16.3
3rd Biopsy: 9/8 7 of 7 Positive, 40-90%, 4+3
Open RP: 11/8, Catheter in 63 days
Path Rpt: 3+4, pT2c, 42g, 20% tumor, 1 pos margin
Incontinence & ED: None
Surgery Failed, recurrence within 9 months
Salvage Radiation 10/9-11/9, SRT failed within 9 months, PSA: Too High
Spent total of 1 ½ years on 21 catheters, Ileal Conduit Surgery 9/10,
7 other PC-related surgeries 2009-2012

summerlover
Regular Member


Date Joined Jul 2012
Total Posts : 23
   Posted 10/6/2013 12:15 AM (GMT -6)   
It is amazing how strong you are! I am praying for you.

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 10/6/2013 2:40 AM (GMT -6)   
Joy, David, and Summer:

Joy, I know I over did it way way to much yesterday. I just can't stand the way the house looks, I mean he did a great job, but it's just not my way. I got up with my cat at 5:30 Saturday morning and just held him, he's 17 1/2 yrs old and has hyperthyroidism, and kidney disease. I believe he's getting close to leaving me and it's so upsetting for me. So, yes, when he wants something I jump, I'll be so upset when he passes. cry cry cry cry

David, you certainly overdid it, I'm so glad you didn't pass out I hate to hear that you felt so bad. The hooking up of the camper alone must have had a total wipe out of you. (((hugs))) you know pain buddy, you and I need to start behaving and listening to our Doctors, or I think we'll be in trouble with them or our spouses.

I hope that you rest all week, I know that you're looking forward to your cruise. I'm praying that you pain levels remain low and that you're able to total relax and feel good while on the trip. I'll miss not having contact with you while you're gone, but I totally understand. Just let me know asap when you get back how you did and how the trip was.

Summer, I don't feel all that strong most of the time. I really push myself to far and then I crash. I slept until 12:45pm on Saturday afternoon. Hence, that's why I'm up now at 3:38am in the morning on Sunday. I'm guessing I'll have to get up in 5 or 6 hours and then stay up all day long. To attempt to get back on track.

I didn't do much of anything today. I've been very tired and I'm a bit worried about Bill and the whole govt shutdown. I really wish we'd hear if he's gonna get paid or not.

Here's hoping everyone has a great Sunday and I hope that you're all feeling well and having less pain days than you normally do.

Hugs,
Barbara
DX- RA, Lupus, Fibro, LGL Leukemia, Pulmonary Hypertension, Bells Palsy, Gastroparsis, Blood Clots, Glaucoma, Chronic Pericarditis & Pleurisy, Severe Anemia. Way to many medications to list.

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 10/6/2013 1:23 PM (GMT -6)   
Sorry to hear about your cat. Yes, we do get attached to our fur babies. I've lost two in the last two years and it's hard to say goodbye to them. Try not to fret too much when he moves on because it is for the best. If you can start looking at pictures of kittens you'd like to have to prepare yourself for him leaving. It helped me having a second pet when one passed on. It seems to ease the pain.

Also we know that stress causes us more issues and if we can find more ways to ease the stress the better we feel.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, Allergies, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

UserANONYMOUS
Forum Moderator


Date Joined May 2011
Total Posts : 4497
   Posted 10/6/2013 3:38 PM (GMT -6)   
Hey Barbara,

Thanks for the updates. I'm sorry about Bill. Hope the government will come to a conclusion soon.

Please get your rest and try not to worry too much. Hope you apps goes well tomorrow. Keep us updated when you can.

UA
Depression, Borderline Personality Disorder.
Chronic Pain - Cervical Kyphosis, Cervical Spondylosis, Thoracic Scoliosis.

Tired Tina
Regular Member


Date Joined Jul 2013
Total Posts : 34
   Posted 10/17/2013 7:56 PM (GMT -6)   
Barbra, you are in my thoughts and hugs sent your way! Hang in there day by day,
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