Surgery Went Fine, But Have To Share

[MightyMouse]

My gyn surgery went fine yesterday--later than expected b/c the anethesia folks were freaked out b/c of all my diagnoses, but after calls to my gp and cardio, they finally cleared me around noon (uh, yeah, that's a bit later than 6:45 am). The nerve block wore off around 4 or 5 pm, so I was uncomfortable last night, but tolerable. I get the biopsy pathology in 2 weeks when I meet again w/ my Gyn for follow up. Teri's shoulder surgery is Tues. We make quite a motley crew here.

The Anesthesiologist's the freak out didn't bother me as much as her saying, and I quote "I don't understand why, at your age, you got the work up to determine that you have a collagen defect. Why bother with getting a diagnosis so late, what's the point?"

Seriously? Are you kidding me? Why wouldn't I want to know WHY my body acts so strangely? When is it NORMAL to pass out? or to have gastroparesis? or to have my blood pressure go from way high to nearly nothing? Why wouldn't I want to know what the diagnosis is if it might lead to better management. What an idiot. I felt like she was belittling me and trying to make me feel stupid for bothering to investigate my health problems. At the moment I was so mad and startled that I didn't think to say, "you're fired, get me someone else."

The patient advocate line will get an earful from me on Monday. The shame of it is that everything else went like a dream and if not for the stupid anesthesia doc, it would have been one of my best experiences at a hosp ever. I understand the freak out, but she didn't freak out until the night before my surgery--if she had just bleeeeeping asked questions when I was there 3 days ago, the insane 14 hours of phone calls and faxes could have been avoided. I was actually on my cell from my hospital bed with my gp helping her fill out the forms!!!! She was livid with the hospital staff--and she's pretty unflappable.

[Mrs. Burschman]

So late? Wow, Mighty Mouse, I didn't know that you were 98 years old. You look great!

Seriously, though, even if you were 98, you still might be interested in knowing why your body doesn't work like everyone else's does. And getting an answer to your specific quirks. There's a HUGE amount of comfort in having an explanation.

That doctor is clueless. She should have become a mechanic. Not to belittle mechanics. But bedside manner is less important when you're working on a Honda.

Amy

[firewatcher]

Ah, I understand now! Very irritating. I agree, she should have asked all the questions at the consult three days before. I think a lot of doctors have detached and now see patients with illness, instead of PEOPLE with illness. Get well soon, or as well as you can!

[MightyMouse]

Ha! Yes, I feel like 98, but in reality, I'm only 44... and my initial POTS & NCS dx came at age 32.

I totally get the fact that anesthesia has risks and that a doctor might be wary of someone like me with a ton of allergies and a bunch of obscure diagnoses. However, what I didn't understand is why they waited until the night before my procedure to start asking questions; the phone calls started at 2:30pm the day before...at 7pm I called the hospital myself asking to confirm that I was "cleared to go" b/c I told them if they canceled me, there was going to be a big response on my end b/c I did EVERYTHING they asked and it was their fault that the extra forms weren't completed because they waited too long.

Also, my gp faxed a clearance earlier in the week, but the hospital refused to accept it b/c it wasn't on "their" form...which, I'll add, they never gave me or my other doctors. My gp's office stayed late the night before my surgery waiting for them to fax the form, and they didn't fax it until after all the staff left...then they started calling the office asking for more information as soon as I arrived at the hospital. Teri and I were making manic phone calls up until literally 5 minutes before they took me into the O.R. Even my GYN was infuriated b/c she'd already gotten me cleared through my E.P. Cardio.

My bp was soaring at 154/94 before my procedure and the anesthesia doc said something like "oh, you must be nervous". No, I wasn't nervous, I was FURIOUS b/c at that point, it still wasn't clear I was going to have the surgery. Also, I wasn't going to have general, or intubation, just twilight... (MAC= monitored anesthesia care), as well as injection in my cervix (oh, I'm so grateful to have been "OUT" for that part!!!!!! oweeeeee).

The whole anesthesia experience just came across as unprofessional and uncaring. Like I said, everything else went so well, that it was a HUGE disparity in my care with the obviously oblivious doctor. She completely blew off what I was telling her about my diagnoses, and about the fact that I didn't really require anything different in my anesthesia care, just careful monitoring of heart rate and bp, and that I'd NEVER had a problem with all my prior procedures--both twilight (MAC) which I've had for at least a dozen endoscopies, and general for at least 6 major surgical procedures (2 spinal fusions, breast reduction, sinus, exploratory abdominal surgery, d & c, etc.)

okay, I'm really ranting--if you can't tell, I'm completely hopped up about what happened. I'm already thinking ahead to figure out what I can do to prevent something like this from ever happening to me again.

Nina

[firewatcher]

Nina, I know you are mad. But consider how the hospital administrator is going to take your complaint. If you just rant, she'll trash it and nothing will get done. Write it up and take the heat out of it. Logical, dispassionate statements of the difficulties you encountered and how it threw off the WHOLE surgery schedule for the day and the extreme, unnecessary inconvenience both you and your docs encountered are enough. Your prior diagnoses should not be the issue, or their uncaring comments. See if you can get your docs to also write letters, since they will carry more weight. I guess it depends on your objective; do you want this to never happen again to anyone, or just let them know that you are upset with your treatment.

You know how these systems work!

Let us know what the outcome is!

[janiedelite]

I think Firewatcher definitely has a point... it's best to cool off before complaining to their superiors. However, I think it's important to include the anesthesiologist's inappropriate comment, especially because when she made it, you were scrambling trying to help her out even though you were the PATIENT. I think that her comment about you investigating a collagen defect demonstrates her attitude perfectly. And I'd probably throw in a question about the purpose of the pre-op anesthesia consultation. You could even have your primary care doctor's office write a short letter about the trouble they went through trying to help out this doctor. Bottom line, I would hope that after this doctor is presented with her procrastination and inappropriate attitude that the next patient she sees as "complicated" won't be made to feel as though they're an inconvenience to her.

As a side note for anyone having surgeries in the future, I was working as a post-anesthesia nurse when I came down with POTS. You can always make a request through your surgeon's office if there's an anesthesiologist who you do or do not want caring for you, or if you want an anesthesiologist who is comfortable caring for patients with dysautonomia/EDS/etc. The surgeon's office staff will forward this information to the surgery scheduling dept, who will relay it to the anesthesiologist who's scheduled for your surgery. Then, that doc can either get informed prior to your case, or swap with another doc. I have done this when my mom had surgeries, because anesthesia can be a trigger for a carcinoid syndrome crisis.

[Dawg Tired]

I am blessed to be living in Podunk Missouri. Tiny community hospital with larger ones 50 miles down the road if needed..... Every test I have had that required an IV has always had to be started by someone from Anesthesiology. Since there is a total of 4 people in that department, they all know me by now - I went in to have my gallbladder out and when I was hooked up to the monitors the surgeon asked the anesthetist, "Everything all right?" Anesthetist said, yeah, he saw me on the schedule a couple days ago and called my cardio... We both teased him about being nosy, but it's NICE to have doctors you don't have to explain everything too!

[tinkerbella]

MM,

I live in the hospital half of the week and have learn to become an advocate for myself through the advice of my new found hospital family of friends which are staff. Since my own family is unable to be with me I've made a whole new family.

They have informed me that ALL hospitals WANTS TO KNOW ANY PROBLEM, so they can speak to that person and they will and it will never happen again. THEY WANT EVERYONE TO BE HAPPY WITH THEIR EXPERIENCE. Further more, you will make it so this will make this person think twice before they say something like that again. They want you to come back and need you to be happy with their services. That was unacceptable!

The other thing is my cardio always talks to before hand and makes sure my anesthesia person is a DOCTOR. I never knew you could get a nurse. Always remember the patients bill of rights.

I'm so sorry this happened to you and please follow through. I think you do best if you do it in a calm manner, but letting them clearly know just what happened. It has been the hardest thing I had to do when you deal with hospital staff weekly, but I did it for not only me but for everyone else and I see a big difference.

Good luck sweets.

xxx's

BellaMia~

[Guest tearose]

It is not comforting to know how much slips through the cracks in the medical profession. It IS more serious because we are talking about our one body, our life in someone else's hands.

I am sorry that you had this experience and although it will take time and energy from you, by speaking up you may just save someone else's life or at least improve the situation for someone else.

hugs and speedy recovery,

tearose

[tinkerbella]

Also, MM where this hits a sore place in my heart of tachy hearts. I have been told that the hospital president is the REAL PERSON to tell. On my last long stay he came right to my room and visited me. I talked to with his assistant and they asked was everything OK? This time I had only compliments to tell him about. He looked at his assistant and said send her a thank you note.

I later found out that he used my words exactly and and went down and told her she was right up there with the Doctors. She was the face of this hospital and the most important person here. It was really much longer and more detailed what I told him. I never found this out as she left for a vacation and when she came to see me before she left that day, I didn't want to spoil her surprise and tell her. She told me casually one day when I asked if she ever got a thank you note. I laughed and said those were my words verbatim and it turns out they left my room and went right down and told her before she left as she was leaving that day.

So do it up in style in a letter to both places.

Sometimes, I think these things happen to us to make us make hospitals a better place for all because we don't only react, we take action.

Once again, good luck sweetheart!

BellaMia~

[juliegee]

(((Nina,)))

It really ***** that they waited till the last minute to start asking questions. Going into surgery, all angry and justifiably steamed up is WRONG. Surgery is frightening enough and you deserved to go into it feeling SAFE and you didn't through no fault of your own. The patient advocate needs to hear of your experience to make it better for the next "complicated" patient.

Sorry-

Julie

[Maxine]

I saw this post a couple days ago, and I had a lot going on this week.

I'm really losing my patience with these doctors, and they should know better to say such a thing, but yet I still see it happening.

Lets see, eight years have gone by since I have been diagnosed with POTS, and later the spine problems, and lastly the EDS.

My EDS wasn't diagnosed until a series of events took place to finally take me to a geneticist in 2006. I was 47 years old!

EDS can cause so many things to go wrong with our bodies. One thing leads to another........and another. Some days it seems endless, and it can really be a nightmare. Only those who have a connective tissue disorder can relate. NOT EVEN THE CLEVELAND CLINIC GETS IT! I'm still working with doctors there to get them to understand my cervical/cranial area REALLY IS falling apart, and really is unstable. the EDS geneticist has tried to find someone to help me other then the orthopedic surgeon who also validated the instability, but I need a neurosurgeon due to the vascular issues in that area, and the cleveland clinic doesn't believe there IS an ISSUE even though I have fluid buildup in mastoid area with no explanation---no history of ear infections.

My friend had surgery in August, and DIED of a ruptured aorta just after surgery. She went undiagnosed of her connective disorder until she was 40. She was 41 when she died. She was diagnosed with hypermobile EDS. What does this say?! It means this this is serious, and needs to be taken seriously no matter what age someone is before they finally get a diagnosis. EDS is grossly UNDERDIAGNOSED. Many people go years with the secondary effects of EDS before they get diagnosed, and sometimes it's too late. My friend wasn't taken seriously when she went to three different ERs, and at one point they considered her to have a PRIMARY anxiety problem because her BPs were running 180/120. Then her pulse pressures were running narrow----big red flag, but they still didn't take her seriously.

Check out this article;

"Centre for Rheumatology, University College Hospital, 3rd Floor Central, 250 Euston Road, London, NW1 2PQ, United Kingdom. r.grahame@ucl.ac.uk

Joint hypermobility syndrome (JHS) was initially defined as the occurrence of musculoskeletal symptoms in the presence of joint laxity and hypermobility in otherwise healthy individuals. It is now perceived as a commonly overlooked, underdiagnosed, multifaceted, and multisystemic heritable disorder of connective tissue (HDCT), which shares many of the phenotypic features of other HDCTs such as Marfan syndrome and Ehlers-Danlos syndrome. Whereas the additional flexibility can confer benefits in terms of mobility and agility, adverse effects of tissue laxity and fragility can give rise to clinical consequences that resonate far beyond the confines of the musculoskeletal system. There is hardly a clinical specialty to be found that is not touched in one way or another by JHS. Over the past decade, it has become evident that of all the complications that may arise in JHS, chronic pain is arguably the most menacing and difficult to treat.

PMID: 19889283 [PubMed - in process]"

WHO CARES WHAT AGE YOU ARE, The point is that you are diagnosed with a connective tissue disorder that complicates things and contributes to your ANS dysfunction.

I really wish some of these ignorant docs would do a little research before they open up their big flapper.

Maxine :0)

[MightyMouse]

Good conversation with the patient representative today. She apologized for the way I was treated by the anesthesia folks, for the chaos and extra work I had to put in and will be meeting with people to address my concerns. Overall, I felt like my point was well received and focused on the professionalism issue, timeline problem, and lastly the issue about questioning the point of getting a diagnosis at my age. We'll see what happens, if anything, but at least I felt heard.

Had a very dizzy and crampy day today--but had to go to work. By 3pm, I felt I should really be at home sleeping b/c my head was spinning. Ate a bunch of salted nuts, a bottle of water and got myself home. Tomorrow, though, I have to be nurse to Teri, b/c she's having shoulder surgery. At least I'll get to take it easy the rest of the day and we can take naps together when I get her home.

Nina

[Mrs. Burschman]

Tomorrow, though, I have to be nurse to Teri, b/c she's having shoulder surgery. At least I'll get to take it easy the rest of the day and we can take naps together when I get her home.

Nina

Taking turns! Hopefully, you'll both soon be feeling well.

[lifesaver]

Glad things are working out. It is nice when hospitals listen. Hope they rip that doctor a new one. At YOUR AGE? My nerve damaged foot. What if it was that doc and their career was affected? Would be whistling a different tune.

So sorry that happened--hope you feel better soon.

Becky

[Stormie74]

So glad your surgery went well. I've learned to speak up when health care people don't treat me with proper bedside manners. A month or so ago, I went to my new cardio doc for the first time. His nurse was HORRIBLE! She gave me orders and bossed me around, never once smiled. My cardio is part of a group of 12 docs, and when my nurse left the room for a minute, another gal came in. She had a badge on that said "nurse manager," so I asked her if I could talk to her a minute with the door shut. I was really nice and said "I think my nurse is having a really bad day." She asked me to explain how she was acting, and I told her really nicely. I found out a week later that she was fired.

So be nice, smile, explain the details the best you can, and take the anger out of it. I think it worked for me!

Caron

[Maxine]

Wow Caron----------good for you!

Glad she was fired!

Maxine :0)