#anyway. i did make a cardiologist appointment so if she can provide me with an actual good reason for concern i'll keep it

[eugeniedanglars]

lord help me i'm about to become the patient every doctor hates and argue with my psychiatrist based on google

[rhiannon-nichole]

Disclaimer: I don’t necessarily enjoy putting my business out here on social media... however, I do have friends/family who ask for updates and my life is just too damn chaotic and confusing to explain over and over again. I do my best to stay as positive as I can despite my circumstances, but the reality is... my body is shit, and this is the easiest way for me to keep people in the loop.

6mo follow up with my Neurosurgeon was last week. He discouraged removing the displaced cage because it is encased in bone, (which was my exact argument as to why wait and not do it sooner than later, but he said grow grow grow bone... and revisit the removal at 6mo. He said and 3mo he’d do the removal if I pushed him, but his preference is to wait until I’m 6mo post op and to leave the worrying up to him and grow more bone- he was very unsuccessful at helping me wrap my head around as to why we want to encase a foreign object with bone growth, when the plan is to remove it and replace it with a smaller cage...)could be more problematic and he’s convinced it’s not the displaced cage causing me pain (mind you my PCP, PT, and Neurologist all agree to get second opinion because images show only a 1mm clearance from nerve pathways, and with hyper mobility, or something as simple as inflammation, that’s not enough clearance to negate nerve obstruction). He suggested I participate in a Spinal Cord Stimulator trial with my Spine Specialist to determine if I’m a candidate for permanent placement in the thoracic area of my spine. He also wanted me to have an EMG to look at the nerves.

Fast forward to today. I met with my spine specialist and being the amazing man he is, he’s not plopping me on the table and moving forward with the study to just make a buck. He makes big money of these trials and suggests I exhaust all avenues prior to moving forward. He agrees with my other providers that a second opinion is something everyone should obtain when making permanent decisions about their medical care. A spinal cord stimulator is just that, PERMANENT! It’s a big deal!

Moving on... he refers me to another neurosurgeon for second opinion and I call them. I explain my situation, which then puts me in tears because of the stress and frustration more than anything. This is my quality of life I have to explain. She then cuts me off, tells me “please don’t cry,” and responds with a FIRM NO. She said that giving a second opinion post op less than 12mo is a liability, and no exception will be made. I tried explaining my situation again, and she transfers me over to a VM for another secretary to explain my situation to... (as if I could ever fit it all into a voice message 🤦🏽‍♀️).

In complete tears and frustration I call my spine specialist back and explain to them about the liability issue and that I’m stuck in a fork in the road. She takes the information down and speaks to my doctor and he personally calls me back. Encourages me to not get too wrapped up in what I can’t control, and to move forward with the EMGs as of now (bilateral top and bottom-neck arms, back-legs TORTURE TEST). I agreed and called my neurologist to make the appointment.

While explaining the situation to my neurologist, exhausted from my shit show of a journey thus far for the day, we determine dates... Jan for VB office, Christmas Eve for Chesapeake office, and Friday for Portsmouth office. I choose Friday, because my goal is to power through and get my final decision and course of action done by the end of the calendar year for insurance purposes. She then asks me after we made the appointment- are you the patient or the referring physician... I’m the patient.... “oh sorry, you can’t schedule your own EMGs. I’m new and didn’t know that. We need a referral from your physician.” From my surgeon or the spine specialist?... apparently it doesn’t matter.

Then I call my spine specialist back... explain that I need a referral faxed over and she then offers me to have it done at their office by the partner to my spine specialist... makes sense- it would be a lateral follow up. So on Friday I will be tortured basically from head to toe. FML

My follow up for the EMG will be Thursday of next week. Once I hung up with them I immediately messaged a friend who ironically was messaging me in the exact second... (spooky I know) She met with her neurosurgeon recently and brought up my situation. He made his suggestions to seek support from out of network EDS specialists without knowing the entire situation, that’s the general outlook... our anatomy is different and we should be treated by physicians who specialize in our condition... however I don’t have out of network benefits, and I’ve been down that shit show of a road before. Fought insurance for 16mo with the recommendation from all my specialists to receive specialized care from a EDS neurosurgeon, only to get a final denial.

Anyways... being the advocate that I am, persistence is necessary to get the care that I need. I’m in a fork in the road and I need help. I can’t make this decision on my own and need the opinion of another neurosurgeon in order to proceed. I called this other doctor and went through a prescreening process. I completed a overall synopsis of my situation for him to review and determine if he is the best fit to give me a second opinion. I should hear back from them in a week.

While ending my conversation with his secretary I’m receiving a call from the heart hospital to schedule my MRA/MRI of my heart/aorta. This is a crucial part of my cardiac health care in relation to my EDS. Unfortunately my cardiologist decided one day recently he was going to leave work on a Monday and not go back on Tuesday. The aortic clinic I’m part of was then picked up by another physician in the practice, and we did a patient transfer. They were supposed to send my request for imaging 2 weeks ago, and I called yesterday to follow up. Apparently it was finally sent over today. (oh the irony 🤦🏽‍♀️)... part of my pre screening for my spinal cord stimulator trial is a MRI/MRA of my thoracic area... and apparently the scan I’m supposed to get will suffice for both. (yay 🙄). Problem is the order is scheduled for 2/2020. Seriously WHAT IN THE ACTUAL 🤬... so now I’m waiting for them to change the dates so this order can be processed and I can get yet another scan.

I am tired. I feel defeated. What in the HELL do people do when they don’t have the mental capacity to advocate for their own medical care? All I can do now is pray and hope for the best that this other surgeon, whom is highly sought out, will not only accept to see me for a second opinion, but within a reasonable time frame.

Fingers crossed. 🙏🏼

[paumeranian]

Interview #8

18/3/19

Tell me about a time where you started feeling symptoms. What did you do? How did you feel in that moment? (How important is it to you to get these symptoms checked out? How long you do you typically wait before doing so? Why?)

Tired from work, felt chest pains, usually just rests and drinks her medicine

If the pain gets worse and spreads to other parts of the body e.g. head and arms will take it to the doctor

Very important to check these symptoms for my own health, to live long

“I know my body well so if it’s mild I can help myself e.g. I know I was tired that day, when I rest and drink my meds (for maintenance) the pain goes away”

In instances where the pain is too much to handle, will take 10-15 minutes before going to ED

Tell me about your healthcare provider. Is your doctor/GP available via booking an appointment or is it a walk-in clinic?

Compare old GP to new GP:

First one where I had to pay was faster (back then it was around $28 per appointment)

Switched to free healthcare (union member), feels as though because they are a union member they get called faster than anyone else

Waiting makes them cranky, adds to the pain, one time they felt like the doctor was annoyed with them, made them feel bad, didn’t blame the doctor as the check-up was almost done and suddenly brought up another symptom which could’ve been discussed at the very start

Doctor said “Why didn’t you tell me right away?”

“I am eligible for free healthcare so why not? The outcomes are usually the same wherever anyway. Since I’m quite old I don’t mind waiting as I have enough time but I assume younger people are more impatient and busier.”

Sometimes consider switching to a doctor of the same ethnicity so I can tell them everything I feel - language barrier and would feel like they really care about me and not just ‘cause it’s their job

Concerned with side effects with medication, one time a different GP suggested to just take supplements as maintenance can have many side effects, but usually doctors just give them straight medication

Second or third opinion if problems aren’t solved with current GP

You don’t want your symptoms to get worse to the point of it being acute

Another person jumps in: “Why can’t I just get an MRI? What’s stopping them from doing it, what’s the cost etc?”

“Or maybe I’m just not sick that’s why they’re not finding anything.”

Anecdotes about friend who says they know their own body so going to the doctor isn’t always gonna be necessary

“My friend had surgery but after that it didn’t look like they were any better” “You can’t guarantee that surgery will make your illness go away”

Talk me through your usual process of allocating a day and time to see your doctor/GP? How easy or difficult is it to schedule an appointment at a time that suits you? (if it’s a walk-in clinic, how long do you have to wait to see your doctor/GP?)

Longest would be about 45 minutes, while waiting I feel hungry, sometimes worried about what would be found

Thinking - whatever the doctor says I’ll do it

I can feel when my cholesterol and blood sugar is high so I’m not too worried about getting a heart attack or anything as I know what actions to take to help myself

Clinic environment - as a public funded clinic, it’s good enough, what’s important is that I’ll get checked out, it’s a complete clinic - they have ECG, but for x-rays you have to go the hospital which is only a few steps away

Is it important to you that you see one doctor consistently for all check-ups? Why or why not?

If I could choose I would ask to be seen by one doctor consistently so they know my medical history and wouldn’t need to look into anything

Unfortunate circumstances would happen inevitably though so would have to switch doctors eventually anyway if this was the case

Comparing NZ healthcare and motherland healthcare (PH)

Wait is even longer in the PH as the population is greater, longer queues

Talk me through your most recent visit to the doctor or GP. What were you thinking and how were you feeling from waiting in reception through to going home?

Feel relieved going home once I know my symptoms aren’t pointing to anything acute, I think to follow what the doctor said e.g. do exercise, get request blood test

How much do you trust the doctors? 

80%, they’re just GP’s so say I need a cardiologist for my problems but I’ve never been referred to one so far. However they do tests to check for heart problems

Prevention is better than cure, this can include exercising, eating better

Brochures containing information like this can be useful so I keep them and refer back from time to time e.g. when I’m feeling something

Can you tell me roughly how long you were seen by the doctor for?

15-20 minutes but they usually only allot 15 minutes for each patient

This isn’t enough time I think as the doctor is constantly thinking about the next patient so they just want to get through my one

Tell me about how your provider explained potential diagnoses and solutions. Were you able to understand clearly the benefits or side effects if any of medication you’re given?

Not always able to clearly understand due to language barrier

What do you look for in a doctor? 

Should think that each patient will walk out of the clinic having been given the right medication, care and advice and have the patient be confident in the doctor. At times I’ve wondered if the GP that usually sees me is an expert in what they do.

Tell me about a significant clinical experience you can recall (either positive or negative). Why was it significant? How did you feel in that moment? Why did you feel that way? Do most check-ups with your provider turn out like this?

Positive - I was seen by another doctor in the same clinic and I felt as though they really wanted me to feel better

More careful about which words they use as to not worry me, is understanding and empathic

Overall, can you tell me how satisfied or dissatisfied you are with your healthcare provider?

95% satisfied as I get medication, blood tests, tell me what and what not to do

Since it’s free I don’t mind the wait

Personal reflections: This interviewee was done with my mum since I didn’t have time to do it with other women of her age. Since we go to the same healthcare provider I already had an idea of what she would respond so there was nothing much that surprised me from this interview. It was interesting to find out that she doesn’t mind the 1 hour long wait as much as I do since she explains she’s “older and doesn’t have to do much throughout the day so she doesn’t mind waiting.”

[kazzey9]

Steps to Surgery

I met my breast surgeon and we reviewed my case from the beginning. She very nicely explained/ diagrammed to my mom, my husband and me about the exact type of cancer I had, invasive ductal carcinoma, and what my treatment options were. My MRI showed my tumor was in my left breast and my right breast had a complicated cyst but no cancer. The MRI also indicated that my lymph nodes may not be involved but only a biopsy would know for sure. My options were to have a lumpectomy or a single mastectomy with or without reconstruction. The biology teacher in me felt that if my breast tissue on the left side had mutated that it would be possible for the same thing to eventually happen on the right side. With this thought process, I thought a double mastectomy was the best option FOR ME because I did not want to go through this again if possible. I asked about the double mastectomy and indicated that I was not interested in implants and gave my reasons why. I was not planning on more kids, I already nursed my babies and now my large breasts were really just hurting my back anyway. I mainly decided against implants because I knew it would require more surgeries over my lifetime since implants should be changed every 10 years and I was only 42. Was I going to be 72 and getting new boobs AGAIN? Umm, nope, not for me.

My Dr then let me know about a type of reconstruction that used my own tissue (autologous tissue) if I was a candidate for the DIEP flap procedure. This procedure is a much longer surgery (10-12 hrs) than a simple mastectomy or implants and there were risks involved such as possibly losing my nipples and a longer recuperation time of 6-8 weeks. However, if successful I would not need future mammograms since all breast tissue would be removed and it would only be abdominal tissue. In addition, my body was less likely to reject my own tissue versus an implant because I do have allergy/ sensitive skin issues. Now to get the abdominal tissue for reconstruction, it’s basically like a mini tummy tuck so I considered that to be in the #winning column! So through a series of very fortunate events, I was led to my plastic surgeon, Dr. ******* who could squeeze me in 2 days later to see if he thought this procedure was possible for me. Thankfully it was!! Because this is a long procedure and would involve 3 surgeons plus the anesthesiology crew and an available OR, the scheduling was a little tricky. He asked me if I could do 6/16 for surgery which gave me 8 days, including weekends, to get medical clearance and to prepare my life for this surgery. 🤦🏻‍♀️

My PCP (primary care provider) is through Veterans Affairs (VA) so getting quick appointments can be difficult at times. However, thanks to secure messaging, I was able to message my Dr directly and let her know about my new diagnosis. Hurdle 1 done ✅Recent lab work done ✅ EKG done- BUT abnormal. So this is where it got even trickier...I now needed to be cleared by cardiology so I thought for sure my surgery would get canceled because that could take weeks to get an appointment. And this is where my angel Liz became an MVP AGAIN and got me in with a cardiologist on short notice. Now the whole cardiology piece was complicated and required several different tests and providers/ technicians to be available on short notice over 3 days and by the grace of god and/ or magic, it all happened!! I was cleared for surgery.

My double mastectomy with autologous tissue reconstruction was done on 6/16/18 and required a 3 day stay in the ICU, not because I was sick but more to make sure the tissue flaps perfused blood properly. And the ICU nurses at this hospital had a whole protocol for patients like me. The staff at this hospital were wonderfully attentive and caring and I feel my care was excellent. Unfortunately, I had to miss Father’s Day and my son’s 5th grade graduation but technology helped lessen the blow some. That’s my face on the iPad my niece is holding- missing from this picture are Sarah and Stefanie who were there but taking the picture. 💗 My tribe showed up pretty strong on short notice to support my son and for this I will be forever grateful.