azucena
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Post by azucena on Feb 14, 2020 17:59:28 GMT -5
two reasons for posting the highlights (lowlights?) of DH's latest round with chronic illness 1. to illustrate that it can happen to anyone at any time; don't take good health for granted 2. therapy - my counselor says the more I retell the story, the faster it will move from short term memory to long term which will have less of an effect on me
DH and I started dating at age 17. At age 21, he had his first flare up of intestinal issues during which he was diagnosed with ulcerative colitis. We got married at age 22 as I graduated from college, and we lived 3 hours away from family and friends. I turned my 3 yr internship into a full time job that I only expected to stay in an additional year or two since I was underpaid making $30k as an actuarial student. DH had to take a fifth year since he missed so much school. 6 months in our marriage DH had another flare up eventually resulting in a total colectomy (first surgery removed colon aka large intestine) and used part of small intestine to form an internal J-pouch (surgeries 2,3, and 4). In the meantime, prednesone ate away his hip joints so one hip was replaced at age 22 and the other at age 24 (surgeries 5 and 6). J-pouch never functioned correctly; DH went to the bathroom 20 or more times per day. Another surgeon tried to redo the J-pouch (surgeries 7, 8, and 9). He graduated with a degree in business and advertising but did not work. Fortunately, he qualified for disability and because he had worked more than the average teen/college student his payment was decent.
Fast forward to 2006 had a period of being relatively healthy, so I began interviewing for a new job. These were the days of pre-existing conditions so I had to watch for healthcare that would actually cover DH. I accepted a position making $50k that moved us closer to home/family. DH worked part time as an after school leader for the first time since 2001.
He decided he loved working with kids and began sHe had surgeries 10 and 11 that were more minor tweaking things. We had DD1 in 2008. In 2010, DH was already getting monthly iron transfusions when another flare up happened. DH's new doctor and our new support group convinced him to get a permanent ostomy; he had temporary ones as a step in the J-pouch surgeries. Surgeries 12 and 13 happened in 2011.
Since that time, DH has been healthy to the point of not even needing medication. We had DD2 in 2012. He's great at his job and he's become a leader in the local ostomy community. It took several years (and lots of therapy) to stop living under the cloud of chronic illness. I made huge advancements in my career including finally finishing the actuarial exams. Last year I made $190k.
Fast forward to Jan 2020. On Thurs, DH came home from work a few weeks ago thinking he had a stomach virus. Then, he thought it might be an intestinal blockage - this happens about once a year and we had been successfully treating them at home. He fell asleep from 4 until 8. I put the kids to bed and he woke up and said I needed to call 911 since it was the worst pain he ever had. I thought he was being a bit dramatic and began getting things together to take him to the ER. He said, nope, listen to me, call for an ambulance. So I did - weird to say my husband has an ostomy and thinks he may have a blockage, send the EMTs. Called the neighbor to come stay with the girls, both husband and wife rushed over. I said, whoa, one of you go home and stay with your own young kids. Ambulance came with lights but no siren after they entered neighborhood, EMTs seemed at least slightly familiar with ostomies.
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azucena
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Post by azucena on Feb 14, 2020 18:10:03 GMT -5
I drove separately to the hospital. My mom met us there. My brother went over to relieve the neighbor. We spent the rest of the night waiting on tests and dr consults. First ER surgeon wanted to take him into surgery immediately even though she couldn't tell me what she thought was wrong. I completely broke down. She said I can see that you don't trust my opinion and she called in for a consult. Second surgeon was like let's wait overnight and run a few more tests in the morning.
ER Fri morning shift changed happened and next surgeon on call was ready to head into surgery again. Talk about a freaking roller coaster. No one could tell us what was happening. I started texting our ostomy friends to figure out who was the best surgeon in that hospital. Came up with a name, Dr D, colorectal surgeon, and demanded to see him. If I've learned anything thru this, it's that you have to advocate for the patient over and over and over and question everything. And get the right dr - the prior surgeons that wanted to operate were all general surgeons who may have been able to do the job but why settle?! Dr D said we were out of time for waiting and suggested that the CT showed part of the intestines was dying and also showed a hernia. Either could be the cause of no output and extreme pain. At this point, DH was medicated and not really up for providing input. Making medical decisions for another person is a tough thing to do. Asked lots of questions trying to avoid surgery at all costs but ending up agreeing with dr. Surgery started at 6 pm Fri night - at which point I'd been awake since 6 am Thurs. 5 hour surgery during which my mom and I did doze off in the waiting room. Dr and resident came out at 11 pm to say that surgery was successful. Part of DH's intestine had twisted on itself and was in the process of dying (painful) and would have caused extreme complications if left any longer. They ended up cutting out 10 inches of small intestine but assured me that he still has plenty left for nutrition. This is called a bowel resection. They also fixed the hernia which involved redoing the ostomy site.
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Tennesseer
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Post by Tennesseer on Feb 14, 2020 18:16:13 GMT -5
Bless your husband's heart. And yours too. (I'm using the north of the Mason/Dixon line 'Bless your heart.)
That's an awful lot of surgery for one so young. I hope he heals quickly and is up and around soon.
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Deleted
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Post by Deleted on Feb 14, 2020 18:16:14 GMT -5
I am sorry you and DH are on this challenging journey, and in awe at your strength. I truly hope that everything goes well in your future journey. I'm so glad you are there as his advocate.
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azucena
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Post by azucena on Feb 14, 2020 18:27:23 GMT -5
Moving the ostomy site from one side of DH's abdomen to the other is something we wanted to avoid if at all possible. Since DH is only 40, he may have to have that done at some point in the future and we need to preserve the open side for as long as we can.
We couldn't see DH in recovery until about 1 am. Then, we sat by him for another two hours. Then, he was moved into ICU. He was on a ventilator and drugged unconscious in an effort to reduce pain. He had never been on a vent before.
Sidebar - three years ago my dad, with whom I'd had an estranged relationship, was diagnosed with colon cancer. He hated anything medical so had never had a colonoscopy even though he was 70 - didn't believe in them. He and my mom were divorced. I was the eldest daughter with all of this "medical experience" that was eerily related (ostomies are usually a result of colon cancer), so despite my therapist's protests, I stepped in to manage his medical care. I attended all of his appts. He went thru chemo pills without too many side effects but cancer progressed. So after a year, he chose to have a pretty radical 10 hour surgery to literally scrape every microscopic piece of cancer out. Surgery went well. He was on his 12th day in the hospital and set to be released. When I went in to pick him up that morning, he had been vomiting - a huge red flag for colon surgery patients - had been ignored overnight. I immediately got the resident called in. He was sent for a scan during which he vomited and asphyxiated. I heard the code called over the hospital speaker and instantly knew it was him. The floor nurse refused to acknowledge it and proceeded to call in the chaplain to console me even though she 'couldn't be sure it was my father that coded'. Worst day of my life. After they resuscitated him, he ended up in ICU on a vent. Since he had signed DNR papers, when he coded a few hours later, we let him go. Surgeon acknowledged that the hospital was at fault in more ways than one. I still can't believe that he did that. I wrote up a report and sent it to multiple higher ups at the hospital but couldn't bring myself to sue because I just needed to let it go for my own sanity. What a nightmare.
All that to say just how messed up it was to see my husband in that same position. I'll continue to be in therapy for a while processing that.
DH was on the vent 3 days. 3 days that I slept in the waiting room and only left the hospital to show and see our kids. 3 days that I had to make myself walk into ICU to see him briefly and then rush out to bawl my eyes out. 3 days that my mom stayed there with me. Since it was clear to the nurses that I was going to bug them with questions, I was able to sit in on ICU rounds. That was a crazy new experience. The head ICU doc literally sat in a small conference room while the residents, nurses, and everyone else recited thru DH's case. I understand maybe 10% of it, but inserted my questions where I felt I needed to.
I told the kids that DH was on sleeping meds so he could rest and heal. I also them kids weren't allowed in his room since they are too germy. They were both upset Fri about going thru school all day not knowing, and in retrospect that may have been wrong, but we didnt know anything either. DD1 was most upset that she couldn't talk to him. It's also too similar to my dad dying after cancer surgery two years ago - she knew he was supposed to come home the day he ended up dying. I acknowledged that this bothers me too. They also tried to be too strong for each other. DD2 was most worried that he would never be the same daddy. She sobbed the most heart-wrenching sobs I have ever heard. I can't imagine how a parent holds it together when another parent dies.
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azucena
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Post by azucena on Feb 14, 2020 18:36:21 GMT -5
The last day DH was on the vent, they started letting him wake up more. He was pissed that he couldn't talk and got so agitated that I ended up leaving the room. The poor nurse did her best to get the respiratory team to get him off the vent. Someone else in ICU coded - talk about traumatic for me - which delayed him for several hours. In the meantime, he made me give him paper and attempted to write his demands and got pissier when I couldn't read them LOL. I eventually figured out he wanted me to fire the nurse. Meanwhile, she was literally stalking respiratory saying DH had to be their next patient. The other part I couldn't decipher was that the poor fella didn't remember the outcome of his surgery even though we had told him multiple times that it was good.
After ICU, DH spent 10 more days in the surgical unit of the hospital. I went back to sleeping at home, took the kids to school, and stayed at the hospital from 8 am to 7 pm for a few days. Then, I started scheduling friends to visit him in the evenings.
One night he texted at 12:30 am asking why I hadn't been to see him all day. I ended up calling him to talk him thru that it was the middle of the night and I had been there and would be coming back. To his credit, he was pretty doped up on fentanyl. At one point, the surgeon asked us why is he on fentanyl. Um, we didn't request it dude.
Remember our ostomy group's recommendation of this dr? Well, the one caveat was that he is a great surgeon but has no bedside manner. Truth! He would round anywhere from 6 am to lunchtime to 9 pm, which made it impossible for me to make sure I caught him. And, he didn't do a great job explaining things at all. It seemed like he would only tolerate one question from us per round so DH and I played a game trying to pick the best question for each day. The nurses would shake their heads about Dr D as well - again - good surgeon, craptastic communicator. I'd rather have the good surgeon part.
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finnime
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Post by finnime on Feb 14, 2020 18:39:24 GMT -5
I'm awed by your strength, azucena. I know how hard it can be especially over the long term, when event after event happens and there's no clear path forward. Thinking of you and your family.
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finnime
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Post by finnime on Feb 14, 2020 18:42:33 GMT -5
Agree about the excellent doctor who can't communicate being the better choice than the okay one with the great bedside skills.
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azucena
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Post by azucena on Feb 14, 2020 18:47:07 GMT -5
Codes continued to be called over the intercom at least twice a day And one day I figured out the cause of the random cart of sandwiches, chips, and sodas that appeared every so often...it meant someone died and was the hospital's way of showing care. Nice gesture I guess but I really didn't need to figure out why the cart appeared every couple of days. I couldn't walk by it without thinking of it as the death cart. 10 years ago we didn't have cell phones to connect us to everyone. Now it was a blessing and a curse. So much support, too little energy to answer half of them. DH did have his podcasts to listen to though. 10 years ago, I wouldn't have let my mom stay with me at the hospital. I wouldn't have texted my friends to watch out for me over the next few months. I wouldn't have broken down in the ER. Therapy is working. Days 6-11 DH had a high white blood cell count which indicates infection which is particularly scary given his prosthetic hips. Dr tried a number of antibiotics. Finally pulled the PICC line and that ended it. Did I mention DH's body likes to have weird reactions to random stuff? It was fighting the PICC line as a foreign body. On day 13, DH was released. I had to fight the social worker to let him go because insurance wasn't completely in place to cover home health care yet. They thought it would take 2-4 more days for the paperwork to process. I promised to bully the ins co until I got answers. Even then, it took 4 more hours for the hospital to get everything together. Since then I've spent multiple hours on the phone with insurance fighting for supplies. Fortunately, DH has a unisex name so I can pretend to be him and I am stubborn and persuasive. He has been home 9 days and will be off work at least 7 more weeks. I'm cleared to go back to work part time from home next week. Have to go make dinner - will finish venting more later.
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Happy prose
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Post by Happy prose on Feb 14, 2020 19:18:29 GMT -5
azucena I'll say prayers for you and your family. What a strong person you are!
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sesfw
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Post by sesfw on Feb 14, 2020 19:33:19 GMT -5
good surgeon, craptastic communicator.
Sounds like the guy that did my colon surgery. Did you go to Honor Health at 101 and Shea?
You guys have had a rough time ...... and I'm glad he is at home with you now.
A blessed Valentine ........... hugs
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plugginaway22
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Post by plugginaway22 on Feb 14, 2020 19:42:23 GMT -5
Your DH is so lucky to have you on this journey.
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busymom
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Post by busymom on Feb 14, 2020 19:47:06 GMT -5
I love that you're such a fighter. Being a caretaker is the toughest job ever. And, it isn't just fighting with hospitals & doctors, but spending HOURS on the telephone fighting with insurance companies.
Be good to yourself. You need time to decompress when things settle down. You don't owe anyone else anything at this point, just try to find some "me" time. (We'll be adding you to our prayer list, too.)
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weltschmerz
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Post by weltschmerz on Feb 14, 2020 19:51:34 GMT -5
Azecuna, I hope you have really good insurance. Hugs. I too would much rather have a really good surgeon with craptastic bedside manners than the other way around. Bedside manners never healed anybody.
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Post by Deleted on Feb 14, 2020 20:01:54 GMT -5
You are both in my thoughts and prayers.
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Post by Deleted on Feb 14, 2020 21:57:47 GMT -5
Your DH is so lucky to have you on this journey.
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irishpad
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Post by irishpad on Feb 14, 2020 22:20:16 GMT -5
azucena, I'm in awe at the tangible love you show for your husband. In you, he has a gem.
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ners
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Post by ners on Feb 14, 2020 22:31:28 GMT -5
azucena It is fantastic your DH has such a superior advocate in you. Remember take time to care of yourself.
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Rukh O'Rorke
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Post by Rukh O'Rorke on Feb 15, 2020 0:13:39 GMT -5
What a tough time for you all.
<3
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GRG a/k/a goldenrulegirl
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Post by GRG a/k/a goldenrulegirl on Feb 15, 2020 8:50:19 GMT -5
I am in awe at how you juggle it all: a young family, a chronic illness, a successful career. Give yourself permission to acknowledge all that you do. You’re carrying quite a load. Ask for help. Ask for time for yourself. And don’t sweat the small stuff — we all drop balls from time to time. Keep posting. This is a really wonderful, caring, community of friends.
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buystoys
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Post by buystoys on Feb 15, 2020 8:57:15 GMT -5
Sending you many, many virtual hugs. I wish I could do more....
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mmhmm
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Post by mmhmm on Feb 15, 2020 11:19:33 GMT -5
azucena , you've been through the wringer backward, haven't you, dear? Your love and your strength of character is utterly amazing. I'm so glad to know your husband has made it home to recover. Just being home and in familiar surroundings can do so much good during the healing process. Be sure to ask for help as you need it and take the best possible care of yourself. It's wonderful to know you have a caring therapist to help you negotiate this very difficult time. I had to chuckle at your description of the surgeon. It's too often true that the best surgeon is the worst communicator. If you want a really bad one, a neurosurgeon comes to mind. That ego is phenomenal but in the case of those who are truly outstanding, it's well-earned. I'm glad you and hubby had one of those great ones around! Usually, the ICU charge nurse or the hospital's nursing supervisor (in my case, my support was available even after hospital release) can provide clarification when needed. They come to know these guys pretty well. I'm keeping your family in my thoughts and wishing for the best possible outcome. Please, feel free to PM if you need me for anything. Much love!
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debthaven
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Post by debthaven on Feb 15, 2020 12:41:22 GMT -5
So glad your DH is back home. I hope he heals quickly. Please take care of yourself too.
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wvugurl26
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Post by wvugurl26 on Feb 15, 2020 13:08:10 GMT -5
Please vent away and be kind to yourself. You've really been through it in the past few weeks.
My ENT specialist as a child had zero bedside manner. Still doesn't have one in fact 30 years later. But he is the best in town. When I was older he took a growth off my step mom's nose and had to stitch it up. It healed with no scar at all. Flawless and you can't tell anything was ever done.
It is very frustrating when you have questions though and you are concerned about your family member.
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weltschmerz
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Post by weltschmerz on Feb 15, 2020 13:58:46 GMT -5
Please vent away and be kind to yourself. You've really been through it in the past few weeks. My ENT specialist as a child had zero bedside manner. Still doesn't have one in fact 30 years later. But he is the best in town. When I was older he took a growth off my step mom's nose and had to stitch it up. It healed with no scar at all. Flawless and you can't tell anything was ever done. It is very frustrating when you have questions though and you are concerned about your family member. Ask the nurses.
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azucena
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Post by azucena on Feb 15, 2020 16:37:14 GMT -5
Left the computer last night after typing all that and had a long cry which was good since I've been numb since he got home. Then, my anxiety took over for the rest of the night - for me extreme anxiety usually involves throwing up.
I have read replies, but I'm going to wait a few days to continue posting my story. I have no doubt that my anxiety and depression episodes are my body/mind way of reacting to all of this. I have therapy on Monday and the meds I've been taking for 3 yrs (and will likely never quit) are holding me up.
DH and I talked this afternoon as he is still trying to piece together what happened. Among other things, he had no idea he was in ICU for 3 days - he thought it was overnight. Then, we took a 3 hour nap because neither of us slept well last night.
I am heading out to dinner with my friends later.
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finnime
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Post by finnime on Feb 15, 2020 16:54:54 GMT -5
Take care, azucena. PTSD from managing your spouse's serious illness is real, as I know you know. Good for you going out with friends.
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pulmonarymd
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Post by pulmonarymd on Feb 15, 2020 17:49:30 GMT -5
I do icu coverage. Patients are frequently sedated and have poor recollection of events in icu, for a number of reasons. It is frequently harder on families than patients for that reason. Your reaction is common. You should allow yourself time to process this all, but remember, he survived a potentially fatal disease process. People can even have PTSD after such an event, and if there is a support group, it may not be a bad idea to attend.
I hope your husband continues to recover, and you can let yourself have your needs met too.
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Deleted
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Post by Deleted on Feb 15, 2020 17:59:31 GMT -5
((Hugs!)) I know the medical stuff is a battle...
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happyhoix
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Post by happyhoix on Feb 16, 2020 20:37:28 GMT -5
So sorry for your families' troubles. I think those of us with pretty good health don't appreciate the struggles other people face to live a normal life. Bless you
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