Wilson

In the three weeks since he came to live with us, Wilson has insinuated his presence into our daily lives in ways that we could not have imagined before. He arrived during my second week in hospital, accompanied by a beautiful bouquet of cut flowers, an indifferent, shiny metallic pink, helium balloon, who kept to himself and spent most of his time inspecting our living room ceiling.

By the time I arrived home, he had lost most of his shyness and had floated down to people level, his paper tag just touching the ground, joined to his solemn round/flat head by a blue paper ribbon. Now, don't get me wrong - we knew he was just a balloon, but he had an uncanny way of catching the most subtle movements in the air. A door opening, a slight breeze coming through an open window, someone walking through a room, an arm gesture - whatever - he would, without fanfare, begin to move, gliding across the floor until his forward motion ceased and he stood undecided or contemplatively until wanderlust again sent him on his way.

Wilson was without comment, but still managed to convey something - concern, loyalty, curiosity? His shiny, flat head was startling to wake up to - often he entered my front room while I slept or read, and would be in my personal space when I looked up, gently swaying several inches from my face. Someone crossing the living room might find Wilson following along behind, stopping discreetly before that person exited. I think he was happy with us in his own way - he never tried to go outside, though once we lost him for several hours and found him on the third floor, where he might have gone to have a little quiet time.

For two weeks now, we have tried to keep him mobile, cutting bits off his paper tag as he lost buoyancy. A shorter Wilson still commanded a certain amount of respect, but we could see that he was losing his focus. For the past couple of days he has been dragging his chin along the floor, and now he seems to have lost interest in life. We are wondering how to dispose of him, not quite ready to just deflate him completely - is he just, in the end, garbage - is he recyclable - should we bury him in the garden?

He has been a good companion, though a bit creepy at times, full of surprises and making us laugh. We will miss him, though we probably won't replace him. One Wilson is enough, and his would be a hard act to follow.

Getting better

I've been home now for a glorious 11 days now, and am making gradual progress on the "getting better" front. I can walk to the end of the block and back now on JP's arm, and eat all my meals at the table (or outside when the weather is nice). Miriam bought me several loose dresses that are easy to put on and that cover my nephrostomy packs - they are comfortable enough to sleep in, so that during the day I am always ready for visits.

We have rented a hospital bed that is snugged up to the front bay window, from which I can see into the garden, and even watch the traffic if I get really bored. A few days ago I felt focused enough to begin reading again, and I have devoured "The Lacuna" by Barbara Kingsolver and am racing through "Her Fearful Symmetry" by Audrey Niffenegger - both very different, but excellent books. I am trying to sort out my email and Facebook messages, an hour or so each day, but the task seems so daunting that I fear that for most people I'll just have to hope that they are reading my blog to keep up with my progress. JP, Eric and I play Quiddler most days, and I can just about stay up for one game. I can also manage to watch a movie at night before going to bed. I sleep long and restful nights and hope that before long my gut will sort itself out. I am meant to start chemo again next Wednesday, but have an appointment on Monday with my oncologist to make sure that I am strong enough. This kidney ordeal has been so rough that I look back on my days of chemo with something approaching nostalgia - ask me to reconfirm this in another week...

Back in the saddle again

I've been home now for six days and resting well at night. For any of you who have had extended stays in hospital, you will know that it is no place to be when you feel sick. What a joke. I was admitted because my kidneys were failing, but it took a day to figure that out, and for the next two weeks each day involved another test or procedure that showed something else that needed sorting out. One test led to a new medication that caused another side effect that required another test. I had chest X-rays, CT scans, VG scans, dialysis, stents implanted into both ureters (didn't work), stents removed, nephrostomy tubes inserted into both kidneys (working well). Throughout it all I was nauseous, couldn't eat, was losing weight and muscle mass, had low energy and thought that I was not going to make it out alive. I developed pneumonia and low blood oxygen saturation. My body was black and blue from blood drawing and drip lines, and my veins were all flat. My pain threshold had plummeted and I whimpered like a baby at the sight of a nurse. Then, miraculously, the only thing keeping me in hospital was a low platelet count. We watched the numbers fluctuate, and then begin to rise over the weekend, and on last Monday I was released to go home. I couldn't leave fast enough!

Six days at home have seen my appetite restored - I sleep wonderfully on the hospital bed that we have rented that allows me to live on the ground floor, with easy access to the garden. Fresh air and bird calls are therapeutic, and having friends and family drop in for short visits makes me feel more normal. I am slowly gaining my strength back - I can walk around the garden now and eat meals at the table.

I am taking anticoagulant injections each day till my platelet count is normal - JP and Eric have had to learn to inject me (a harrowing, but successful venture), and I am on antibiotics until Monday. After that I will hopefully be free from medication, except for the pain killers that I am still taking for belly pain - and perhaps that will disappear too over the next couple of weeks.

We had a freakish accident occur yesterday while I was taking the sun in the garden. On his way to get me a sun hat, JP put Ranger onto my lap. Ranger's leg slipped between the slats and he tried to jump down, twisting his leg in a very painful way. Ranger, hanging upside down, screamed, clawed my legs and bit my foot. I screamed and managed to lift his leg out of the chair. JP ran back totally confused, and we cleaned up my painful wounds. The nurse came shortly after and did another clean-up - says to watch the area for infection over the weekend. I was going to try to go for a pedicure with Miriam on Monday, but doesn't look like this is going to happen now, as soaking my foot doesn't look like an option any time soon.

Good friend Jenn came from Montreal and spent a whole day with me. Her major contribution was making a contraption to hold my nephrostomy bags, and taking pressure off the tubes, allowing me to be active during the day. Bless her.

Every day I am feeling stronger and more active - thus this blog today. Thanks so much to everyone who has been keeping in touch - even though I have not been responding personally, I have taken strength from your good wishes.

She's Home!!!

Today is a great day as the doctor said Anne could finally come home. There were more ups and downs on the weekend because her platelet count was lower than the normal range and fluctuating. On Monday morning it was still low but getting higher, so she was given the green light to come home, and boy was she ready to get out of there!

Right now she's in the garden enjoying a beautiful day OUTSIDE. She's waiting for a decaf coffee, which is presently being served, and is about to eat some crackers and cream cheese. Thanks again everyone for your good thoughts and words; I'm sure every one of them counts.

I hope the next posting you read will be an authentic Anne entry!

Down but on the rise...

(JP here). Ostensibly wireless internet is available for visitors & patients at Sunnybrook, but access is limited. So these blogs are generally written at home.

Thursday was harrowing. After a wonderful start, including lunch in the food court for Anne and Eric, Anne started feeling gradually worse in the afternoon. Alarmingly tired, in some pain, unable to eat again, drinking little. She wanted to sit up, to go for a small walk with me around 6 pm but when she tried, she felt faint. (Vagal syndrome, the passing doctor proposed). She then got back into bed and decided to have some oxygen after all (in spite of nausea) since her saturation level was low. She “stabilized”, and her friend Rikki Blitt came to spend the night at the hospital.

This Friday morning, Anne reported being a bit better, and was again hungry, had some breakfast, and a bite of lunch after Eric and I arrived, but was definitely not ready to brave a major outing again. She is low on potassium (go figure – when she arrived at Sunnybrook 10 days ago her potassium was dangerously high), so is mandated to take pills again, and these make her nauseous. Nevertheless, she managed them, crushed and taken with banana. She was also put back onto intravenous drip as it was thought she had lost so much fluid yesterday (mostly urine into the nephrology bags).

Except for the potassium, and a sudden drop since yesterday in the platelet count, her blood indicators are all better, on the way to falling into range. The platelet situation needs to be monitored and could be a result of blood thinners.

All in all, Anne is still feeling a moderate upswing; ate again this evening and went for a short walk with Eric. Presently the plan remains to have her discharged Monday.

Tonight Miriam is coming for the weekend, and cousin Jed is due for a week’s visit tomorrow.

More good news

A quick note to say that Anne continues to do well. Today she is off the oxygen tubes completely and maintaining a high oxygen level. She is feeling good and her appetite is returning. She didn't sleep well because of the oxygen, ironically; it irritates her to have the tubes there and she says it leaves a smell and a taste in her mouth that is unpleasant.

But this morning she craved a navel orange cut into sections. They had other types of oranges in the cafeteria, but I bought her one and it seemed to satisfy. It was heaven to watch her devour them with relish as she read the morning paper (also a first since she's come in). After this she eagerly awaited the breakfast tray, and in particular the nescafe. She drank the coffee and ate about a third of the pancakes that came with it.

Her urine output had decreased to what seemed like a more normal rate in the meantime. In the late morning, we watched an episode of Gray's Anatomy together; again, something she just couldn't muster the energy to do before. Her nurse Elein told her later that she could be wheeled down to the food court for lunch, and so we had them call for a wheelchair. It was very exciting to go somewhere that wasn't for a test or a scan for once! She ate some chicken teryaki, again a small amount, and afterwards I was thrilled to be able to take her outside for the first time in nine days to breathe some real air. Fortunately the sun was shining.

We didn't stay long, though, as the experience of being in the chair was becoming a little tiring; she is coming off a very rough two weeks, after all. We returned to her room and slept for a while.

This afternoon her doctors came by with the wonderful news that they expect to discharge her on Monday! We are so excited to have her coming home and feeling well. Thanks again to everyone for your support and good vibes!

Waiting Game

(JP here). Tuesday was hectic. Anne started Ampicillin, a more appropriate antibiotic for her infection. She was taken down for an ECG, then a VQ (Ventilation-Perfusion) Scan, then had a chest X-ray in her room. (One nasty thing was the 1-hour wait after the VQ for a porter to bring her back to her room. We intend to complain about it).
Doctors and others (including the Rapid Response team) were concerned about the build-up of fluid, and nevertheless recommended a blood transfusion, and tube insertion last night. In fact her indicators improved a bit, so they decided against both, although she is due to have the nephrostomy tubes today at 1 pm. After she returned to her room she was given an oxygen mask to increase the flow to her blood, and felt much better, although the mask and the excess oxygen did not help her sleep.
Still, she was perky this morning, but now sedated as she is preparing for the tubes.
We have also been contacted by our dear thoracic surgeon friend from Minneapolis, who may be trying to help from afar - and any such help is most welcome!

UPDATE: Anne's tubes are in; she said she liked the doctor, who explained things well, the procedure went fine, and she already has a bagfull of urine. Still a bit drowsy, looking forward to eating tonight...

Postscript: Eric here, at the hospital. I just wanted to add to the above that since yesterday, early evening, Anne's energy has gone up and her nausea has diminished. The difference was enormous, and tremendously uplifting (at least for me). On Tuesday morning, sitting up and brushing her teeth was an ordeal that made her extremely nauseous. Walking to the bathroom was not an option. On Wednesday morning, sitting up and brushing her teeth was a breeze and she felt fine. She walked to the bathroom against orders and literally hopped back into bed afterwards. We aren't sure what to attribute the change to, but the oxygen mask seemed to be most responsible.

This change in feeling has continued today, and if we're lucky, she'll be able to hold food down. She certainly seems to have a healthier appetite at the moment, which will soon be put to the test. It's perhaps too soon to say we're out of the water, but I would say that the signs are encouraging. If nothing else, it's wonderful to see her feeling much better and to have long conversations with her.

Hospital Update

On Sunday night, a doctor came around and gave us some news: first, that the infection was not in the urinary tract, but in the blood. The next step was to determine the type of bacteria in order to treat the infection with the appropriate antibiotics. Second, that there was some kind of "pocket" that showed up on the x-ray around the heart that they wanted to follow up on with another x-ray, apparently to determine whether it was linked to the infection (pneumonia) or if it was a result of Anne sleeping in a particular position. Third, Jean-Paul had noticed on the labs that her levels of creatinine had increased - abnormally high creatinine levels are used as a marker to indicate renal malfunction - and so I pointed this out to the doctor, who was unaware because she had not checked the most recent lab reports. This ultimately resulted in the scheduling of a CT scan for Monday morning to determine whether or not the stents were working properly.

Overnight, Anne remained nauseous and had her fever return. She also vomited a little a couple of times. In the morning, she had her second chest x-ray and had her CT scan around 1:30. By this time, her fever had gone. She was quite keen on drinking a soy drink that Miriam had bought in the cafeteria, and did so in small doses. She ate the smallest bit of a cracker. Later in the day, she seemed to perk up and requested a coke and some ice cream. Small portions of these items were obtained by Miriam, mixed, and avidly consumed by Anne, and she continued to drink the coke. This seemed to relieve some of her nausea, to our relief, and to perk her up some more.

A doctor from urology came in the late afternoon to recommend an ultrasound to determine whether Anne's stents were functioning. I countered that she had just had a CT scan a few hours earlier for that very purpose, which surprised him and caused him to leave to have a look at it and return about 45 minutes later.

The next big piece of news was that Anne's hydronephrosis - swelling of part of the kidneys and ureters - had not gone down. (Monday's labs had also indicated another rise in creatinine.) The assumption was that the stents were not working properly, and therefore that they would recommend inserting nephrostomy tubes into her back and kidneys. Essentially this means eliminating urine via these tubes straight from the kidneys and into a bag.

While this may not be the best news, we may take some comfort in assuming that Anne's persistent nausea has been due to the stents not functioning. At this point our desire is to have the nephrostomy procedure done ASAP so that she can start being and feeling healthy again, and come home. The doctor also suggested that this procedure will be less painful than the stents procedure. Further, there is the possibility that renal function will return at some point in the future.

There has been no update on the status of Anne's infection at this point (Monday evening), nor on the results of the second x-ray. Her oxygen situation seems to be better today. Miriam has spent two nights at the hospital with Anne, the first in a chair while resting her head on the foot of the bed! Last night she slept in the little bed with Anne, but we have now brought a mattress into the room so that one of us can be with her at all times.

Thanks for all the good vibes! Knowing that so many people care is a great support to the family. If anyone is aware of any mistakes or misunderstandings of my interpretation of the medical information in this and other postings, I'd really appreciate correction in the comments section. Thanks again!

Still in hospital

Eric here. Unfortunately, Anne is still in hospital as her nausea has not let up much since her arrival here Tuesday night. They have had her on three different anti-nausea meds, but neither has done the trick. The doctors don't really know what is causing it, but one theory is that she has a lot of toxins in her system that need to be flushed out; a consequence of her recent renal failure.

On that topic, she never did have another dialysis session, which was a relief. However, she did have stents inserted in her ureters (lines between the kidneys and the bladder) because there were some obstructions there. The experience was very unpleasant and painful, but she has endured everything with typical and yet amazing stoicism. We were further dismayed to learn that these stents will have to be replaced in three months.

She has had intermittent fever over the last twenty-four hours or so, but most recently her temperature was normal. The doctors suspect she might have a urinary tract infection, so she has been given antibiotics. She has been eating very little, and occasionally has not been able to keep food down. A doctor this morning also thought she was not getting enough oxygen and so she now has tubes going into her nose with a feed.

Anne and the family are extremely appreciative of all the support we have been given. Due to her present condition, however, we would ask that friends check with us before coming to visit. Besides the nausea, she usually feels fatigued and sleeps a lot.

In spite of this gloomy report, we remain optimistic and hopeful. Anne is fighting through this. We all want to get her happy and home. Time to send out your good vibes!

Addendum

On Thursday afternoon the various urologists and nephrologists decided to put stents in both ureters. A rather painful procedure, visible to Anne through live TV from a camera inserted into her (cystoscopy). But the idea is that now the kidneys will be relieved. During the procedure, it was determined that the ureters had been affected as a sequel of the surgery.

One step back ....

This is JP writing. Anne has not been feeling good for a couple of weeks, (bloating, unable to eat, no bowel movements for 5 days, even though we saw her surgeon "post-op" last Wednesday, and her GP on Friday, with those complaints).
We were advised by Brenda (secretary at PMH) and by our friend Jimmy (who works at Sunnybrook) to go to emergency if things did not improve, so I went to Sunnybrook with Anne Tuesday night. They did a CT scan, and it turned out after a blood test that her creatinine was very high, indicating kidneys not functioning properly - also her potassium level was high. Wednesday, while Eric, Carolina and I were visiting, they did a dialysis, but the machine malfunctioned after an hour or so. Still, that was enough to bring down her potassium to normal levels, and her catheter showed good urine flow. She also began to eat and evacuate more normally.
Next? They were thinking of putting in tubes to help relieve the kidneys, but now, this Thursday morning, think maybe that will not be necessary, may be healing herself. She is in good spirits and definitely feeling better.
Doctors still looking around for a cause, more blood tests, more diagnoses. She will be in hospital for a few days - but for sure the chemo planned for next week will have to be put off.