RE: Frustrations with negative vs positve thinking

Hi everyone.  Got home late Sunday after spending 5 weeks in Ohio with my parents.  My dad had his kidney tumor removed and a piece of his kidney on April 23rd .  Biopsy came back and it was renal cell carcinoma but they say they got it all.  Thank God for that.  His incision is about a foot long but he's doing good. This is the first surgery he's ever had except outpatient hernia and he's 79.

He developed some complications after surgery, possible blood clots in the lung and legs.  Kidney function was high and they were ready to take him back into surgery and put in a stint.  5 minutes before surgery, Doctor came in and said it was cancelled because his kidney function had improved and he didn't need the stint.  We were all thanking God for that good news.

Then, later that day another doctor came in and said he DID need it.  It's been like that from day one in the hospital.  Too many different doctors....vascular, pulminary, nephrology, and urology.  Doctors, fellows, residents, dr's on vacation, yada yada.  I never saw so many doctors with so many different opinions on how to treat his problems.  And their was a huge lack of all the specialists communicating with each other.  I guess they say, too many chiefs and not enough indiansIs that how that saying goes?   Yes we are grateful that he had a whole team of doctors but the team wasn't working as a team.

It has been a very stressfull and frustrating experience.  It reminded me of all the crap I went through with my perforated bowel and my colostomy.  No pun intended with the "crap."  LOL  Some doctors are good and some, not so good.  How do I say what I want to say here?  Doctors are only human, like all the rest of us, but we are trusting them with our care and drawing on their knowledge and experience as a doctor.  If the doctors are all arguing and have conflicts about what the care should be, then I get really frustrated and nervous.  Who do we believe???  The trust factor kind of gets thrown out the window. 

Then there was the blood clot issue.  First he needs to get up and walk, then they say no, stay in bed so the clot doesn't move.  So he stays in bed.  Then so & so says, no, he should be up moving around.  And where is the blood clot?  Maybe the lung, maybe the leg, maybe the thigh.  What are all these maybe's???  Well, we can't say for sure if its a new clot or an old clot that's he's had a long time.  But they have to err on the side of yes if it is a maybe.

So they put him on coumadin which he very much opposes.  First he refused, and then they got him to change his mind.  He is so afraid of it and for good reason.  One doctor stood right there and said it was rat poison, dah!  And then they wonder why he doesn't want to take it!!!Lord, help me to be patient and rely on your power over this. 

This whole situation has just been out of my control and we all know how it feels to feel out of control.  His coumadin levels are being checked 2 times a week and they keep reducing it.  Hopefully he won't have to be on it very long, possible a year tops.  

Just like everything else, we all know people that have had good experiences and bad experiences, even with bariatric surgery.  But hearing the bad things always puts fear in all of us. We can hear several good things, but the one bad thing we hear is the thing that sticks in our mind.

I've worked so hard over the years on changing negative self talk into positive.  It is so crucial to my everyday journey with eating behaviors and changing myself from the inside out.  The outside of us will change drastically in the first year or so, but it takes lots of hard work on our part to change the inside of us so we can be successful in maintaining our weight loss long term.  

I got my negative thinking and attitudes from both of my parents. But as an adult, I can't blame them for things.  Its now up to me to change my attitude and take responsibility for my own actions.  We can't change what we don't acknowledge.  And that's what I've tried so hard to do. Being almost 9 years out from my WLS, and my ability to maintain my wt. loss is absolutely done 1 day at a time, 1 step at a time, 1 change at a time, 1 goal at a time. And with God all things are possible.  

I've missed this board, my sisters and brothers in OH.  I've missed my connections with support group meetings and all the interactions.  I don't know how people can be successful at this journey doing it all by themselves in the long term.  I still learn new things and seek more knowledge about weight loss maintenance.  This isn't a diet, it is a lifetime journey and I'm so grateful to all of you for walking this journey with me.  

Thanks for letting me vent here.  Hope to see all of you soon at a meeting or gathering.

Much love and hugs,
Kat    

Hi Kat,  nice to have you back and posting again.  I'm understanding the pain you have been feeling and it's a very scary thing when the doctors we look for to have the answers to our health issues can't agree on the plan to make you better.  It would be scary for all of you, but it sounds like you, your dad and the rest of the family are trying to cope and make the best of it and making some decisions on your own as what your dad may or may not need.   Please keep us informed on your dad's progress !!!!  I'm sure you are glad to be back home but a part of you wanted to stay w/ your daddy !!!!  Take care and get some rest, ok !!!!!!

Big Hugs for you !!!!

Jamie

Kat,

Back in 2002, Bill had a blood clot in his leg. He was quickly diagnosed with it. Then they did a stress test, and EKG..then a cath..and had to do a quadruple bypass. It left me with the impression that (1) blood clots were not only very serious but easy to diagnose and that when they are diagnosed that (2) they quickly try to be sure no other problems exist.

Then I had my experience in 2007....

When I was moved to Seton Rehab, the first that I had heard the words 'blood clots' was when they came in to give me my shot of lovenox. I instantly pick up the phone and called Bill & demanded to know why he never told me I had blood clots. He said he wasn't told about any and that IF I did have any that he was sure Dr. Gupta would had told him. So..I talk with Seton's doctors and they said I had one in my leg & one in my lung and continued with the lovenox and started me on coumadin. When I got out, I asked Dr. Gupta & Dr. Bergman about the clots. Both of them felt that I never had any clots. My pcp (at the time) sent me to the Indiana Hemophilia Center because she was having trouble getting my blood count in range with the coumadin level. The visiting nurse was checking it every day at first...then M-W-F. The IHC specialist, Dr. Greist, said that after viewing my scans, that I definately DID have a clot in my leg & my lung. So..she ups my coumadin. I was going to have the hernia surgery and we discovered that the blood thinners (although never did I get on enough of a dose to get it where it should be) was causing my white count to bottom out. So...surgery had to be post-poned and I got off of the thinners. I haven't been on any since then. now...I'm having surgery June 9th. Both surgeons participating again. Although it is FIRMLY believed by both that I NEVER had ANY blood clots, I had to contact IHC to see what they wanted me to do....I'll be doing lovenox for 2 weeks post-op.

So..why the confusion???
The 'clot' in my leg, I was told was probably a pocket of blood from me just having a thigh lift 10 days before. It's common with that procedure to get little pockets at surface level..so not a 'blood clot' in the OMG form since it is not in and/or blocking any vein/artery.
The second 'clot' in my lung is iffy as well. It could had been scarring. I was diagnosed with pnumonia a week before. I was told that I has aspirated stomach fluids into my lung when the tube was removed from my plastics. So...did I really have pnumonia then and that was what showed up in the scan...or was it a blood clot and I was misdiagnosed the first time? Gut feeling? I was misdiagnosed. I have had pnumonia before and this did not feel like that. The only symptom I had was that I could not breath. no chest rattling, no nothing. I just could not get enough air in. I was hospitilized for the pnumonia and they kept trying to get me to cough up mucous. I never coughed up a drop. There was nothing to cough up! What did happen though was that each time I tried to cough, I could feel the wire from my abdoplasty bounce on my intestines. I sincerely believe that is what caused my whole inschemic episode. I think that irritated the heck out of them and caused them to swell.

So..now...?
I'm glad that Dr. Gupta & Dr. Bergman insisted I ask for Dr. Greist's advise. I probably will for any future mobility-reducing procedures I have in the future. When getting conflicting information, I just think it's best to stick with the 'let's be on the safe side' way of doing things.

I've missed seeing you on here Kat. I'm looking forward to seeing you & your posts more often!
Sherri

Sherri,  Thanks so much for going into such much detail about your experiences with blood clots.  What an ordeal you have been through.  Personal experience has given you lots of knowledge and insight. 

I agree with your "lets be on the safe side" approach and that is what I was trying to do.  It's just that when it comes to a blood clot, which is very serious, it doesn't make sense to me that 5 different doctors are coming in his room and each one has conflicting medical advice about what to do.    They said that dad was a complicated case but why they're all trying to figure out what the best treatment plans is, they are telling him to stay in bed and then someone else tells him to get up and walk around.  So then fear sets in  for us that if he really does have a clot, why are they letting him walk and see what happens next???  OMG  They were giving him lovenox shots before they put him on the coumadin but they never started the coumadin until he was already discharged.  He had to go see another specialist (vascular) that he was supposed to see as instructed on his dischange papers.

When we got to his office and waited 1 1/2 hrs to see the doctor, he had no idea WHY we were even there and didn't have any of dad's medical history from the hospital.  Which by the way, I suggested to my mom that she call them ahead of time and make sure everything was there, but she thought I was interfering and "people just don't do those things" so I never said I told you so to her.  These mix-ups have happened one too many times in my own experiences and I was just trying to suggest that to her.  But they are "old school."  LOL  

So there was that much more confusion.  It wasn't the doctor's fault but the office staff did not handle it professionally after we got there.  So this doctor knows virtually nothing about dad's case and says that he must go on coumadin if there is any suspicion of a blood clot.  Other doctors had told him, no, he didn't have to go on coumadin.    Like I said, there were just too many chiefs and not enough indians or however that saying goes.  

He went on coumadin and felt lousy.  They had to keep lowering his dose but they were only checking his blood count twice a week.  The second time they poked him for blood, he really bled ALOT.  That's what a blood thinner does to you.  He has to be really careful not to cut himself shaving or anything.  

Bottom line: its better to be safe than sorry about blood clots.  He just wishes he had a better choice then "take coumadin" or have a filter put in your artery.   Too bad there isn't an alternative blood thinner he could take.  If anyone has any knowledge about alternatives, let me know.

I am praying that your upcoming surgery is successful for you and they can accomplish closing things up. 

I had fat necrosis complications after my tummy tuck and had a 6" wide by 3 3/4" deep hole in my belly for about 4 months.  I just wanted them to sew the hole shut, but they said it had to heal from the inside out, so it took 4 months of going to the doctor every week to have the dead skin cut away and changing dressings every few hours all those months.  And I did get more than 1 doctor's medical advice and it was the same.  It was painful but I still say that it was worth it 100% and I'd do it again.  It is a complication on my list that I was informed about before have the TT, but we always hope those things won't happen to us.  I personally have had much worse complications from prior surgeries, so that helped me get thru this too. 

We find the strength to do what we need to do and that's what you've done too.  You're a real fighter and your strength and willpower will get you thru.

Big hugs,
Kat