Saturday, February 6, 2016

Update on the life of someone breaking down

Went and saw the Dr today - was told that unless I have surgery to fix the fistula then there's no point to treat the e-coli and doing so would probably make matters worse because it's part of my normal gut flora at this point and treating the e-coli wouldn't eliminate it from my gut but only decrease the bacteria load in my gut. He said that he wouldn't treat it with gentamicin unless I'm in the hospital and he would preferably treat with erterpanem (not that the sensitivity showed that it would be sensitive to that).

After that I went to my hospital and paid for my sick note (cuz the surgeon wouldn't just provide one - nope, I had to pay for it!) and brought it to Oc health and talked to the nurse there. She was very accomodating about time frames and going back to work. Just today the home care nurse said that my wound looks so good that we can go down to once a day for wound care (YAY!). We'll be doing that every evening (because the evening nurses are MUCH better than the day ones and they're also nicer).

Also trying to make plans for clinical this upcoming week. I figure if my bottom is doing that well that I could do clinicals next week. This semester I'm doing it in a school setting. It should be interesting to see what they do to keep busy on a day-to-day basis. What I like is that where I'm doing clinicals there are three schools on the same site so the nurse doesn't have to travel daily from one school to another.

What I'm a bit nervous about for clinicals is that I have to do an education piece for this community (school setting) of a vulnerable group that actually needs something done. I'm thinking pregnancy prevention education, tobacco prevention & risk factors, or head lice prevention & treatment - but I don't know enough about this community to choose one over another or to come up with something new. Hell, perhaps obesity is huge and that needs to be dealt with. We shall see.

My mom just got back from the Dominican Republic and was letting her know about what's going on and while talking to her we were discussing the upcoming appointment with the fistula surgeon and while looking at my papers found that I missed my appointment with the immunologist (not that he's willing to do anything about  my IGg deficiency). Speaking of immunology - I went to the lab to get my follow-up bloodwork to find out what my levels were and to get another specialized test done - well the lab in my town says that they have NO idea what "oxidative burst assay" is and that it doesn't exist (as though the specialist that ordered it doesn't know what they're doing!) and that to have my IGg levels done would cost me $200!!! Dude, this fucking test didn't cost me a thing 6 months ago and now all of a sudden it costs a bloody fortune?! So I told them forget it about both of the specialized tests and I would go ahead with the general tests of CBC, lytes & urine culture.

Since I have immunity issues, little tyke is coming up on 2 yrs since she was immunized and so we wanted to test her MMR & Varicella levels to see whether she has issues as well. So I took her with me to the lab and they give me a hard time saying that because the test wasn't ordered on a public health form that they wouldn't do it. So since I had to wait for me to be called for my blood work to be done I called my Dr's office and talked to the main secretary (who is also a phlebotomist) and talked to her about the issues that the lab was giving me and asked her whether she would just do the blood test.... and she said that she would fax the stupid form (all filled out) to the lab. Goodness she's awesome. Then it was our turn. Little tyke did awesome. She was really brave and only cried a little when they poked her (tho the stupid phlebotomist told her that it wouldn't hurt at all and so she was quite upset when it did and said that I had told her it wouldn't hurt.... set her straight that I had told her it would hurt a little but that she had to stay perfectly still and could cry (but not scream) if it hurt) and I rewarded her with a kinder surprise - a special one... my little pony which she absolutely loved. Now she's telling everyone about her "ordeal". It's really cute.... she even points to the little poke mark and everything. She did very well for the first time having her blood work done.

Now to wait on results!

Tuesday, February 2, 2016

Can't they just tell me everything in the first place?!

Went back to my primary doc to see about whether the infectious disease Dr had contacted him regarding my gentamicin conundrum to find out that neither had the damn Dr contacted MY primary Dr, nor did they contact me regarding the referral that was sent to them STAT on Friday.

So.... nicely my Dr's secretary (whom I'm in with) gave me the number of the ID Dr and simply asked them directly what was going on. Turns out that they won't just answer the question that my Dr posed on the damn referral (that would be too EASY!) and instead I have to wait over a week to see this Dr in person next tuesday. Can't it ever be simple?! Not so much for me evidently.

On the flip side, while I was talking to my Dr he commented about a "consultation" I had with the neurologist - reminded him that it was follow-up and he brought up the documentation that the neurologist sent to him about that particular meeting.

He talked about how I'm "stable" on Diamox for my IIH and how during ground neurology rounds there was talk about how transverse sinus narrowing should be treated with stenting. Thing is - the stenting bit wasn't mentioned or even offered as a solution to what I'm experiencing. My CT & MRI showed stenosis and now I wonder whether stenting is a better option than to take medication that really isn't helping me - I'm still having considerable headaches (that I keep to myself). Instead, this damn neurologist talked only about how I must take a pain medication holiday for 4 months and lose weight.

Why do these doctors not tell you everything when they have the chance to and provide you with information that will actually make a difference in treatment options that you may choose for YOURSELF - hell, it is MY body afterall.

So now I have to wait another 4+ months to tell this damn doctor about finding out this information and I have to wait another week to hear from the ID Dr to find out what I should be doing about the abcess that I currently have that isn't being fully treated. Goodness I hate that I can't just get a second opinion like American's can so easily obtain.... oh to be Canadian!

Friday, January 29, 2016

Visiting my primary physician turns up something interesting

Went for follow up with my primary doc about my wound culture results to find something interesting:

E-coli (not that surprising considering the wound culture is a perianal abcess) but the interesting part is that it's HIGHLY resistant to antibiotics... the only thing it's sensitive to is Gentamicin. Thing is, current literature states that you don't want to really give Gent now a days because of the connection to hearing loss plus it is harsh on the gut and will increase the chances of developing C-diff.

The other thing that turned up is Group C Strep which I was surprised about. Thankfully it's sensitive to penicillin so my doc easily gave me a script to cover that.

But now the conundrum about what to do about the Gent.... considering this is like my 4th abcess, it's important that we use the correct antibiotics if we hope to get rid of it once and for all. So my doc consulted an infectious disease doc but because it was 3pm on a friday didn't reach them so now we wait til we hear back from said person - probably monday.

For now I will take my Amoxil and at least treat the Strep. And perhaps I will take some lactobacillus to ensure that my gut still has some healthy bacteria when we're done sorting all this out! Wish me luck!!!

Not what I thought it would be

Had the follow up with the neurologist today - all he could talk about was how I need to get off any NSAIDs or tylenol products and how I MUST be off them for 4 months minimum. What a load of bullshit. He wouldn't even refer me to a specialist in IIH until this occurs. The only thing he would do was refer me to a neuro opthamologist and that likely won't happen for another 6 months at least.

Today was pretty good in terms of movement. I was able to get a hold on the constipation (thank the lord!) and have many bowel movements. I rewarded myself with a trip to the mall with hubby. HA! I think hubby was feeling pretty bad about what I've been going through because he was cool with me spending $75 on premium tea!!! Mmmmm yummy tea.... one that tastes like strawberries, another like blueberries and the last is one that smells (and tastes) like peanut butter cups! Goodness they're yummy.

My home care nurse says my bum is healing well, even if it's hurting quite a bit. So I'm hoping next month the specialist can do something once and for all about my butt issues.

Wednesday, January 27, 2016

On the mend.... maybe?

The nurse saw my bum and agreed that it was inflamed but didn't think it was inflammed because of infection. Plus there wasn't an increase in exudate or a change in exudate appearance. So he cleansed it really well, put some providine on it and packed the wound with providine soaked packing and thankfully today the inflammation was signficantly reduced - as was my pain!

Now if only I could get a handle on the constipation! I try to increase my fluid intake, take my senna/colace and increase my fiber intake - to no avail.... stupid diamox! Makes me dehydrated which makes my situation even more dire

Speaking of diamox - I have my follow-up appt with the neurologist tomorrow. I doubt that he's going to say anything. For the most part I'm doing well in terms of headaches/migraines. I think I can tell when my pressures get high because the pain starts right behind my right eye. I normally take an extra diamox and hit the hay for a couple of hours. Normallly that's enough to stave off a migraine due to high pressures. I count myself lucky that I don't have near the complications that others have with IIH - I feel guilty a bit that mine is a seemingly mild case - and for that I am also severely thankful for. I know how bad it can be and how lucky I am to have what I have.

That being said, these things make going to school rather difficult. Concentrating has been difficult at best. I've gotten very little school work accomplished this last week and a half. I seriously need some things to go in the right direction so that I don't lose my semester.

So I suppose I should get a good night's sleep and call it a night so that I can go to the neurologist tomorrow and then get started back on all this school work!

Tuesday, January 26, 2016

I don't know what to do

The pain has been significant, so I've been taking my statex like I need to (~twice per day at this point) and because of the constipating consequence of this narcotic I have become quite bunged (ya I know, not quite a term) up and have tried to counteract this by taking senna & colace.

However, said medication isn't working very well and I've been struggling with constipation. The other problem is that this damn abcess is next to my rectum and thus I have the dressing that's next to and sometimes covering the rectum - which makes having a bowel movement rather tricky.  

Of course, having a bowel movement is important and this I was able to do. Problem is is that it feels like I have other abcesses - hard, painful bumps where there shouldn't be any - it should be smooth.

So now I don't know what to do.... I think I may just wait to see what the homecare nurse says considering they've been doing this dressing on my bum for several days now and who knows, it coulld be changed.

If things have changed and they're still there tomorrow, then I guess I'm heading back to the hospital tomorrow.


Monday, January 25, 2016

Emergency surgery

So I had to do corporate orientation this week. 2nd day in and my bum started to hurt. Not overly so but certainly noticeable. 3rd day in and my ass was KILLING me! So much so that I went to the ER.

And got bitched out by the surgeon about why didn't I go to the hospital where I had the other butt surgeries done and where my own surgeon is and such. He complained that he didn't have access to the diagnostic images that I had had done nor the operative reports - as if it would take a million years for a fax to have been received.

Then he mad handled my ass to do his exam - making me cry. So I begged the nurse for some pain medication - to be told by her that the surgeon wouldn't permit her to give me more pain meds because he would be taking me for surgery "soon". Whatever the hell THAT meant!

SO I had the surgery - was in recovery and asked what he ordered me for pain meds.... tylenol (which I'm allergic to - fucking idiot!) and morphine => 1-2mg q1hr.... the q1hr was good but the 1-2mg is bullshit considering I take 10mg orally.... the math certainly doesn't add up. So when my pain went up at about 3am, I asked for the max dose (which I received) then clock watched til 4am because the 2mg certainly did NOTHING for my pain!!! I got the max dose again and thankfully that was enough to take the edge off.

Then my bladder was telling me that it needed to relieve itself so here I was in the bathroom with the water on and nothing is happening. My bladder is screaming at me telling me it needs to come out and I was certainly relaxed enough for things to happen but then NOTHING. I let the nurse know about this and so she kindly bladder scanned me and I had 350mL sitting there (I think I had more but she didn't scan me quite right but I wasn't about to complain)... so I went back to bed and tried again another 3 times before being able to FINALLY pee. Geeze that felt good!

At about 6am the surgeon comes in to ask how I'm doing - doesn't check my ass out or anything and goes to leave. I told him that I needed a sick note and told me that I needed to get the paperwork to him - as in the ones that oc health requires. It didn't matter that I also needed one for school. Just off he goes.

Later when the nurse goes to get my paperwork ready, she realizes that the surgeon didn't write me a prescription for ANYTHING.... no pain meds, no antibiotics.... NOTHING. Nor did the surgeon take a fucking culture - from an abcess!!!!!!!!!!

So off she goes to page the surgeon to find out that that was intentional - that because of my "many" allergies to pain meds (tylenol, codeine, demerol, percocet) - that he told the nurse I should just take "advil". His words, not mine! Unbelievable! I had told him going into the surgery that I took statex (morphine sulphate) 10mg when this sort of thing occured and that I had enough for ~5 doses. Clearly this surgeon has NO idea how painful it is to have an abcess cut open on your ass!

So I literally left the hospital to go straight to my family doc to get culture swabs so that when homecare came to pack my ass that they could take a proper swab that should have been done in the first place by the surgeon. I also got a prescription for more statex so that I can get through this rough period. I am so unbelievably thankful to my family doc for being so wonderful and understanding. He couldn't believe that I'm going through this AGAIN. Frankly, so am I! So here we go again....