hubby, Gary. I have been telling everyone that our insurance FINALLY approved him to go to Mayo Clinic at the urging of the University of Iowa, to see a specialist there that would be the ONLY doc in the country that would attempt to fix his basketball size hernia that his stomach is in, plus part of his small intestine. We have been overly excited as it was scheduled for May 1st for the consultation. Last evening Dr. Sarra called us, & has reviewed the latest CT scans & all his 28 abdominal surgeries that required mesh be put in. Unfortunately after an hour of talking with him, he doesn't feel Gary has enough muscle left any where to fix it. Now he the best in the country, & Gary as I said was to the University of Iowa, & Rush In Chicago. Neither would even touch him. He has so many many probems, & the last doc because our insurance changed to an HMO really messed him up bad. To take out his gall bladder, he accidently cut into the existing mesh, Gary got staph, strep ,& pseudomonus in the wound, & it took 3 years & 8 more surgeries of debriding to get the wound to heal. The new doctor was told of the mesh & that they had left a space to remove the gallbaldder had it ever come up, but didn't bother to check his records from the previous surgeon. He's a mess, & now very depressed again. I even asked what about his quality of life, & Dr. Sarra said he was just so sorry, but there is no muscle & even if they took it from the back or leg , when they do this it loses it's strength, & wouldn't work. Plus his rate of infection from all the previous surgeries figures in too. So don't know what we are going to do. He has no life because of the pain. It broke my heart to see the tears running down his cheeks when we were talking to the doc. I am going to make sure his physc knows about this for sure, but would you please keep him in your thoughts & prayers if you so believe. I know the stregth of this group first hand & have seen the miracles of our group of people. If you can find it in your heart to just include him every once in a while I would truly appreciate it. Thanks, my friends... Mary
Anonymous Hi friends, I am here once again asking for support now for my?
- Posted:
- 20 Apr 2012 by Anonymous
- Topics:
- diabetes, type 2, pain, fibromyalgia, bipolar
Responses (23)
Anonymous 
BunnyCats20 Apr 2012
Hi Mary, I'm so sorry to hear that your husband is going through this. I think men have a lower tolerance to pain than women do. Get him outside in the sunshine and make sure he gets plenty of sleep. He will be in my prayers.
Have you gotten a second opinion? Maybe another doctor could do the surgery.
Anonymous 20 Apr 2012
Hi Liz, & thanks for the suggestion, but he has been to 4 different specialists, & no one will touch him.The doctor at Mayo was our last hope. He doesn't take anything for his pain because then he gets constipated & that just causes more problems. He can't hardley eat, & if he does eat a meal he usually gets another obstruction. He has gone to bed every day for over 3 years now at 4 PM in the daytime because he is so ill. He has many more problems than just this too. I appreciate the kind thoughts very much... Mary
BunnyCats
20 Apr 2012
Have you tried to fix his diet to very digestable foods. Perhaps some fruit or vegetable shakes would help. They would be very easy to digest. Maybe he should drink some of those Ensure shakes that they tell older people to take for extra vitamins.
We aren't going to let you lose him over this! :)
smoovechic20 Apr 2012
Oh Mary I am so sorry about Gary! I really hate Doctors sometimes. They messed my neck surgeries up 2 times. I will pray for him & hope he gets to feeling better. It's so freakin hard when you live everyday in pain. I hope there is a Good Doctor to help him. Your Friend, Smoovechic
Anonymous 20 Apr 2012
Thanks Beth, I hope your headache is better today too. How are you feeling... Mary
Anonymous 20 Apr 2012
Thanks A, yes it is very distressing for both of us. He is actually handling it better than me right now... Mary
pledgeAnonymous 20 Apr 2012
Our wise pledge certainly brings up a good point, sometimes things happen for a reason. Maybe there is something coming in the future that will greatly impact Gary?
Please tell him to never lose hope, as it is the best of things.
Anonymous 20 Apr 2012
Thanks my friend. I do know the sincerity in your words too. Yes, we are disappointed, but I guess that's the way it goes sometimes. I just wish they could do something for him... Mary
DelilaAnonymous 20 Apr 2012
He's is doing better than I am! Already up, & out & about. I'm still in my jammies & still crying with a lump in my throat!.Thanks Delila, my friend... Mary
Delila
21 Apr 2012
I've been thinking of you both since i read your post yesterday. I'll send you an e-mail so we can talk more...
ukliz20 Apr 2012
Hi Mary, it is breaking my heart reading what you wrote I know how much you both were wanting this mayo appointment, but try not to loose complete hope. You have to try and stay positive for Gary's sake because if he sees you give up completely like the doctors seem too, but I am sure it was tough for Dr Sarra to say no to you also, but in some small way it saved all of you going down there for nothing also. But I know all of us here will have Gary and you in our prayers and hope that one way or another Gary will get the help he so really needs and deserves and help for yourself to find the strength to cope with what your going through, I only wish I could be there for you in person to give you a big hug of support. You have to have faith Mary that something or someone will help, with poor Gary's suffering. Best wishes and love to you both and write to vent anytime you need to Mary, I know no one can wave a magic wand like we all would if we could.
Anonymous 20 Apr 2012
Now my lump in the throat has turned to tears again. Thank you Liz for being my friend. You suffer so much, & yet have the sympathy & empathy for Gary & me. I don't know how you do it, but I love you for it. Thank you sweetie... Mary
Patiently...20 Apr 2012
Oh my gosh sweetheart! My prayers are with you. I truly cried reading this, its heartbreaking to hear these doctors say they cannot do anymore. Please don't give up and continue researching for clues maybe the doctor could use. I'm so sad. I wish the best for your family and hope they can come to some sort of fix for him.
Anonymous 20 Apr 2012
Thank you so much for your prayers. I hope they help in some way. If the doctors at Mayo can't help him, & it would take a long time to explain it all, there probably isn't any help available. He has been thru so much, & yet it is he that seems to remain the stronger of us two. I just can't get my mind around the fact that he will have to live this way for the rest of his days, but I thank you for your love & concern... Mary
bumblebee9020 Apr 2012
Mary,
I started crying when I read this (and still am). I hate that you are going through this, and I hate that that precious man is too. I just couldn't believe it when I read this. But please know that I am a big believer in prayer and I will pray that something works out. I will pray for Gary and his physical well being and his depression too. I will aslo pray for you to have the strength to deal with all of this. You are a precious woman. And very dear to my heart. Never stop believing and never give up my friend. You never know when a miracle is right around the corner. Love, your friend always, Ruthie
Anonymous 20 Apr 2012
Thanks Ruthie. You already know how much I appreciate your concern (we just talked)I believe it's more me that's having the problem dealing with this news. Gary did have tears of disappointment last night, but seems to be ok today with it. I know down deep he isn't, & am going to alert his physc so we don't have a problem in that deparment. Only think it's best for him to do this. He is the kind of peson that hides his emotions. I wear mine on my shoulders. You mean so much to me as a freind, & confidant, I appreciate you more than you'll ever know... Mary
bumblebee90
20 Apr 2012
The same here girl, and no matter what... we'll get through this together. Just look at all the people you have pulling and praying for you two. I meant to say earlierl... tell Gary hi for me and let him know I'm thinking about him. Take care friend... and don't overdue it yourself. Ruthie
kaismamaAnonymous 20 Apr 2012
Yes, he does. Has worn an abdominal binder for years since this all began in the 90's. He recently had a specialty brace made that has plastic liners inside of it to keep the tummy in it's more normal place. He hates wearing them because they are hot, plus he has psoriasis, so very uncomfortable, but a necessity. He's been to two University's & was scheduled to go to Mayo, but as I stated after reviewing all the CT's, 20 years of 28 different surgeries, infections etc,,, they have nothing to offer him. Not enough muscle left to add any more plastic to hold his insides in place. The rest of his muscle is atropied & scar tissue is a problem too. Thanks for your prayers, much appreciated... Mary
Anonymous 20 Apr 2012
My dear friend, you can always count on me to keep you and G in my thoughts and prayers, I know it's been difficult for him especially after the latest situation. He must feel a bit hopeless at the moment, but I am just praying that a doctor will be found that can help your husband.
Talking to his P doc is a great idea, maybe that doc can lift his mood at this time.
I know how hard you've been working lately Mar, you need to take some time for just YOU once a day. Even if it's just walking the dog, or watching the eejit box. You deserve that, and G will benefit as well, as you will feel more rested and ready to take on the world as you do every day, Lady. You are an inspiration.
Love,
Lara
Anonymous 20 Apr 2012
My sweet little Irish rose! You are always there for me even last night! What would I do without you??? My Sis, my friend forever. I know you are always "there" for me . Your friendship has meant more for me then you'll ever know. I will take time for me I promise! I just am crushed at the moment. We had such high hope that would be answer for Gary, but it was not meant to be. I am sure he is hiding his feelings from me is why I will call his physc & give him the bad news. I know he can sense my frustration over this & he always puts me first over his own feelings. I need to take better control & quit the tears! It's very hard to do, but with firends like I have on this site, I think I shall persavere! A big thank you to everyone who has responded. I was a little irked with my little Irish rose over the birthday thing the other day, but I see how many of you care, & it makes my heart swell.
Anonymous 21 Apr 2012
Right back at you Mar!! How very sweet you are!
I truly believe that things happen for a reason, we just don't know why.
Everything is in God's hands, hope Gary can trust in that. But I know how disappointed you both are, the Mayo was your big hope. Yet, there will be something that comes along for him eventually. Never lose hope!!
xoxo
20 Apr 2012
I'm so sorry Mary! That must have been quite a blow to hear that after being so hopeful!! That is just so heartbreaking but it is better that they dont try to go in and do something that may cause more damage or cause you to lose him on the table. It must truly be a grave situation in there if this Dr cant do anything. As far as the constipation issues with his pain meds, has he ever tried any pain meds with naloxone? I have been reading that small doses of naloxone with pain meds can really help opioid related constipation. If I can find the articles I was reading, I'll either copy and send or send you a link to read and maybe you can run it off and show his Dr. There has to be some kind of compromise between some pain meds and controlling the constipation. I know my dad is undertreated for his pain because he cant stand the constipation that pain meds bring. Men can be so hard headed when they get something in their minds too.
Anonymous 20 Apr 2012
Thanks Dzoo. You too are among the friends I have counted on many times, & have always come thru for me. Being on Medicare & UHC (stupid HMO) we had to jump thru hoops just to get the referral for the Mayo visit, so know they won't cover a naturalpath, but it may be something I can start researching. We are both on disability so not a great income source either. The problem is his whole abdomen is mesh now, & they would have to put more in for the huge hernia, & there just isn't any mucle left to attach it. I asked about using his thigh or back muscle & the doctor explained they can, but it loses it's strengh when they do this so it wouldn't hold as a muscle, especailly that much. Even talked about using human & pig skin etc,,, but with his rate of infection, just can't see it as an option at all.
DzooBaby
20 Apr 2012
Ooooohh UHC-the enemy!!! I work for a competitor! We are better and nicer!! Haha! Too bad you dont live in AZ! We have coverage in other states but I only work with AZ folks. They are usually dual eligibles with both Medicare and Medicaid so I know how it can be to try to get something out of the ordinary authed. If you could afford it, a naturopath might be able to increase his immune system. It might be worth a try but no-medicare and UHC wont cover at all. It sounds like he really has a mess going on in there for sure-poor man! I'll keep you both in my prayers!!
endlessPred20 Apr 2012
Mary, this is sad news. At least you know what you have to deal with for his condition now. Am familiar with the no hope diagnosis. It breaks us down for a bit. Then there is laundry to do, shopping. Life continues as well as it can. You are strong enough to do this. He is coping in his own manner.
You just might look into hospice to help out. They have so much to offer and help when a person gets exhausted. And they are a break for the care taker and the patient. Around here we have a beautiful place where the patient can stay a few days and sometimes that's really helpful. It relieves guilt. His for making you work harder while you have your own health issues and for him so he doesn't have to underplay his needs and feelings. Men are so good at that part. Support staff can help with bathing, whatever. They address spiritual as well as practical needs.
Anonymous 20 Apr 2012
Tahnks Karen for the hope & prayers. I know you completely understand the stiuation as for what you deal with on a daily basis, & I can't imagine what it is like for you. You are a strong person that's for sure. I am so glad we have this great bunch of people on the site to help support each other when thing seem so bleak. Eveytime I read a response I tear up again. I will persaverve as usual, but we are going to haver to work out a schedule for sure! the work around here is killing me! Just kidding of course, but could be my weight loss issue for sure! Seems like when I have to play the caregiver, I always lose a little. it's been my second job for so many years it's almost second nature to me. I practically have a degree in surgical care by now! If I hadn't been by his side the hospital nurses (no offense Dzoo & Laura) would have killed him by now.
DzooBaby
20 Apr 2012
Hospice is really a good idea Mary! They really CAN be a great help! No offense taken about the hospital nurses!! I am always shocked by what I hear that goes on these days in the hospital. One thing that can go on that a lot of people dont realize is that many hospitals use Nurse technicians who dont have NEAR the experience or education that an RN or LPN does. They are just unlicensed people who get pretty minimal training and work under a nurse who is usually the supervisor and they then work under her/his license. So a lot of times what you think is a nurse is not a nurse but a tech. They allow them to do a lot of what a nurse can do under her license. I would never put my license on the line like that! There are some really shitty nurses too. I dont think they get the training we used to get back when I was on the floor. When I was on the floor we still gave daily baths and linen changes!! You dont get that anymore (and hospital aquired infections are up tenfold too-hmm...
endlessPred
balbaneseAnonymous 20 Apr 2012
Thank you so much my friend... Mary
balbanese
20 Apr 2012
You are very welcome.
Billy
smileyhappyAnonymous 20 Apr 2012
Thank you Lynne. I know we all have our crosses to bear, & the day has been so long already, can't believe it is only 2:30 in the afternnon. I have been so busy answering each of you ( & intend to do just that!), I haven't had much time to try to help anyone else, & that makes me feel a little guilty. I have made so many friends on this site, & if anyone understands it all of you do. I knew in my heart that you all would come thru for me & Gary even if it mean't more tears on my part. Maybe I needed that! Thanks, Lynne for your thoughts & prayers... Mary
smileyhappy
21 Apr 2012
Your Welcome Mary! Take care
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Thanks you Patti. I just can't stop crying. I am going to lose him over this sonner or later with the bowel obstructions. I know I can count on you & the others ot help me get through all this. How is Ken doing today ? Have they sent him home yet? I know how medicare is about staying in the hospital.
He's as goos AA can be expected and he will be in the hospital for at least a few more days. They are keeping a watch for infection and he still can't have solid food. They still have not gotten the neurologist in because they wanted all anesthesia out of him and less painmed before they try to evaluate him. Thanks for asking. Patti
At least you are getting a little break, but watch out for those cats!
Haha, they keep looking at me like, oh crap, it's you again, where's dad, WHAT HAVE YOU DONE WITH DAD? It's so funny, normally cats love me, but these are cat snobs and I am just not good enough for them. I am enjoying my break tho, how evil does that sound!
YOU DESERVE IT, girl! No one I know would have done what you have for your roomy!
Patti, Just wanted you to know that I will say a prayer for Ken. I'm thinking about you too. Love, Ruthie
Thank you girls.patti