Other than the obvious of having been hospitalized for three months and having gone through hell and back, there are many things I will definitely NOT miss from here.
Procedures, Tests, Transfusions, Infusions, Injections, etc.
- the first thing I will not miss, although I fully understand they were all essential, are the phenomenal amounts of procedures, test and transfusions I have received and been subjected to. Let’s review 2012 so far, shall we?
Bone Marrow Biopsy (Jan): x 1
Lymph Node Biopsy (Jan) x 1
(Surgery in left side of neck)
Chest X-Rays: x 11
Chest CT Scan: x 3
Head CT Scan: x 1
Abdominal CT Scan: x 1
CT Angio Scan: x 1
Bronchoscopy (lungs): x 1
Sygmoidoscopy (lower GI): x 2
Colonoscopy: x 1
Push Enteroscopy: x 1
(upper & middle GI Tract – incl. injection of epinephrine and haemoclipping procedure to fix Dieulafoy Lesions)
Blood Transfusions: x 13
Platelet Transfusion: x 8
Immunoglobulin Infusion: x 3
PICC Lines: x 3
IV Lines: x 7
No to mention innumerable blood sugar testing (anywhere between 4 to 8 times a day), injections of insulin, injection of other meds, and the gazillion pills I take daily along with IV meds.
Jet Propeller Air Vents
- The entire BMT Unit has a central positive air filter system, which is what makes it possible for people to visit us without having to put masks since the air is filtered out to make it safe for all of us immunocompromised people. However, these vents are in each room and are excessively loud. I need the most noise-cancelling earplugs to be able to fall asleep in this infernal noise.
- In fact, this noise was a major part of my almost going crazy while I was going through my hallucination period. The noise is all I could hear and it literally was driving me nuts – still does.
- It seems that every single bed in this hospital is in dire need of WD-40. You can tell exactly when your neighbour, be it a roommate, the room next door, heck, even a few doors down the hall, is getting up from the high-pitched squeaky noise the beds make – it is deafening. When it is your own bed, it is a sure way to instantly wake up.
Middle of the night bathroom break
- Oh, how I will not miss the middle of the night bathroom breaks. Normally, at home, I would not wake up in the middle of the night to pee. However, here, with the 24/7 hydration and meds, our bladders can only hold so much which means a pretty regular pee schedule approximately every 2 to 3 hours, day or night. You can actually hear the symphony of flushing toilets around the Unit on a regular basis.
Fluctuating Room Temperatures
- Not only are the vents insanely noisy, they constantly push cold air around the room. And, of course, their position is conveniently located right smack above our beds. Therefore, there’s always a draft of cold air descending upon us. Most times I need to go to bed with a scarf or hat on my hair-challenged head which is always cold at the best of times. When it gets horribly cold, then I put on a scarf and a billion blankets. Not a pleasant way to fall asleep.
- Come daytime, with the south-facing window of my room, the whole place feels like a sauna. We really don’t have control over the room temperature, it is all controlled by Central somewhere in the catacombs of the hospital.
- The IV poles to hang the meds have either one or two pumps (sometimes more depending on your needs) and each have their plethora of noises: chugging, whirling, beeping, alarms, and bright yellow displays and flashing lights. These are never more than a few feet from your head 24/7. Yet again, it is another source of constant noises which becomes so annoying that it infiltrates your brain and dreams even if/when the machines are not on.
- I dream of this noise for weeks once I’m away from it. It permeates your mind forever.
- Other than the noise, there is also the fact that I am connected to this IV pole 24/7 by a few set of tubing through which the medicine and hydration is ‘fed’ into me through my PICC line. It is a very short tether which is very cumbersome and intrusive. I need to constantly be vigilant about the tubing as it is connected to my arm through the PICC line which goes straight to my heart. We don’t want to pull it out, now do we.
Five AM Blood work
- Five AM Blood work. Yes, you read it correctly, the 5 am blood work where the nurse comes in and draws blood to determine your blood count which will be used to figure out if I’ll need blood or platelet transfusions, what my white blood count and neutrophils which determine if body is fighting something along, if my meds need tweaking and so on.
- Through blood work they also see how the liver and kidneys are doing, along with electrolytes, potassium, magnesium, glucose, etc….
Diabetes blood test
- For a while, I needed to have my blood sugar checked every 6 hours, along with the regular meal time checks, and they figured that midnight was a good time to have one of the checks. Indeed, they would wake me up to prick my finger. Try not to wake up from that one!
- at least now they only do 4 times a day (meal times and evening) although once in a while they’ll do it twice first thing in the morning as my blood sugar goes down in the morning.
- the thing about this med-induced diabetes is that it fluctuates according to the meds I am given. I have an IV med at night that makes my blood sugar skyrocket, it has nothing to do with what I eat. However, they figure I might remain diabetic until I am weaned off the darn steroids. Those steroids are the culprit of so many issues, it is insane!
- Forget it! Napping is SO NOT going to happen here. I tried napping this morning and I had the Endocrinologist knock and barge in (why bother knocking if they don’t wait for me to answer?). She leaves, and I lay back down but a few seconds later the nurse comes in to do my vitals. Then the cleaning staff barging in and banging the mop on pretty much every piece of furniture, shaking the garbage as loudly as they can (or so it sounded to me) and just being annoying as hell. They leave then as soon as I start falling asleep again, the Fellow Doc comes in. He’s all concerned that I’m trying to sleep, asking if I’m feeling unwell? No, I’m just trying to nap. What a concept, right? Then physio comes in to tell me they’ll be in later this afternoon.
- The BMT doc asked if I had a rough night. No, not rough, just short. I have nurses come in to hang meds, do blood work not to mention the times I am up to pee due to all the hydration that is dripping into me 24/7. So nights are always interrupted. All I want is take a nap.
Nurse Morning Shift Change
- Seven AM is when the night shift ends and the day shift begins so there are tons of nurses chatting about, yakking, laughing, catching up….which is normal for the workplace however their work place is my sleeping/living area.
Cytotoxic Bin Pounding
- Since this is a BMT unit and many of the meds given are considered cytotoxic which need to be disposed in special containers. Therefore when the containers are full, the lids are pounded shut and the containers can be disposed of. There are MANY of these containers to be disposed of and there is lots of pounding noise resonating throughout the Unit on a regular basis, starting quite early in the morning.
- Or so that is how it seems to us patients. There are a limited number of highly coveted single rooms. Depending on the requirements of patients in terms of health issues, blood counts, physical requirements, patients will share rooms when possible. They will have private rooms if they are more critical, require more attention in terms of physical requirements (myself) or assistance or are severely immunocompromised.
- The problem with frequently changing rooms, especially in my case where being here 3 months and having changed rooms half a dozen times or so. Therefore after a while, you sort of forget what room you’re in and it gets confusing. Sometimes I wake up and look around the room, and only by looking outside can I re-orient myself and figure approximately which room I’m in depending on which side the room is facing. It all blends in after a while. If I go for a wheelchair spin, I still need to look at the room number to make sure I go into my room and not crash into a stranger’s.
- Not so much. Forget about having any privacy here. Even when the door is closed people simply knock and barge in. So really, why bother closing the door?
Dignity and Respect
- Most nurses are awesome, caring, and very supportive, some not so much. Some of the nurses can be very condescending and patronizing and treat you like a child. That annoys me to no end and I tend to lash back. I think it is highly disrespectful on their part.
- Same as any other job, most of the nurses are exceptional at what they do, however, others should definitely not be doing this job as they are too scattered, don’t take the time to do their job well, are blazé about it, or simply too tired and make mistakes. However, some are simply not a good fit for this field of work. Unfortunately, this ‘line of work’ deals with people’s health and lives and if you don’t belong in this field, then mistakes can happen and I have seen that first hand – not a good thing.
- human error in my meds is something I definitely will not miss. Patients need to be extremely vigilant and aware of the meds they are taking as there are mistakes in the meds distribution. Most often than not, there’s over medication, or simply the wrong medication is given. Be your own advocate.
- Make sure to record everything. Write down every med you take, know what they are, their purpose and when they are to be taken.
- Well, what can I say about highly processed, mass-produced hospital food that hasn’t already been said by myself or someone else? Hospital food is not suited for healing. Hospital food can be tolerated only if someone is hospitalized short-term but not on a long-term basis or if they have very specific dietary requirements.
- What will I truly miss the least? Kitchen screwing up my meals, preventing me from eating because of their mix ups.
What I will miss?
Is there anything I will miss? Yes, I will miss some of the people. Some of the doctors and nursing staff have been phenomenally caring, supportive, attentive and compassionate. After three months here, you definitely develop relationships with certain people and I will miss them.
I will also miss the cool feature of a bed that can be positioned according to your needs. That’s pretty cool.
Although I complain about the food, it also means three meals a day plus snacks I don’t have to prepare myself. I’ll miss having someone come to assist me at the call of a button; the sense of security that comes from being surrounded by medical staff; daily blood work to keep an eye out for infections; simply having people around; visitors, help and assistance.
Once home, albeit in a safer space in regards to environmental germs and bacteria, I will nonetheless be alone to prepare my meals and have fewer visitors. Somehow people visit you more at the hospital than at home – I never understood that as home is where we have fewer people continually coming and going and where we actually need visitors for company and for help.
No matter, I am SO ready to go home. Now let’s tell this to my body so I can walk out of here.