Posts tagged 'Acute Myeloid Leukaemia (AML)'

Too many cooks

Posted by on October 19th 2019 in Health, or lack thereof, Just for fun

Way back in April the hospital dietician put me on Fortisip Compact Protein liquid to slow down my weight loss. I have been kept on them to aid my efforts to get my weight back up to the agreed target of 70kg. They were specified by my hospital dietitian to the exclusion of any other similar product. Acquiring them has been, and continues to be, a process fraught with unnecessary obstructions.

For starters, when my TTO supply (those that the hospital gave me to take home) was running low, the prescription from the GP's surgery, which was were supposed to take on the repeat supply element, wasn't in place. Then, when a prescription was issued, the receiving pharmacy cocked-up the quantity. Also, it took a week or two more for the GP's staff to get around to specifying the preferred flavour (banana) on the prescription, and when they eventually did so it was a travesty of SPaG:

Then it went awry again - a couple of weeks later I went to the pharmacy to collect some other meds that I'd requested on prescription to find that they also had 56 more bottles of Fortisip ready for me, which I didn't yet need and so hadn't requested. One walk to the pharmacy and back became three walks, and our house was infested with little plastic bottles.

Fast-forward a few weeks to a review by the hospital's dietitian. It was agreed that I would introduce a little variation into the game - instead of having only the banana variant, I would move to a 50/50 split of banana and strawberry. The dietitian sent a letter to that effect to my GP's surgery and that was summarily ignored. It took a further three weeks and a stern call to my GP's surgery from my dietitian for that change to make its way onto my online meds request, When amended, it still said "(Flavour Not Specified)" but the second line was updated to "(bannana and strawberry only please)". Pick the bones out of that!

When the change was in place I went online and raised a request. Three working days later I went to the pharmacy to collect... they'd got the strawberry ones but not the banana ones. I had to wait a few more days for those.

The next time I requested them, all went well, everything was ready at the same time and I thought that the problems were behind us.

I was wrong.

On Wednesday last I saw the hospital dietitian again, we discussed my diet and my weight-gain, and she told me to continue taking the Fortisips. The next day I went online to request the next batch only to find myself stymied. Without consulting me, or my dietitian, or anyone at the hospital, on the Tuesday a pharmacist (not a doctor) at my GP's surgery had unilaterally removed the listing for Fortisips and had replaced it with a listing for Ensure Plus Advance liquid. No flavours have been specified:

Just to add insult to injury, the Ensure Plus Advance liquid webpage says Ensure Plus Advance is... formulated specifically for patients aged 65 years and over. FFS, I'm only 57!

I was furious. I emailed my dietitian for advice but I'm yet to receive a reply.

And today I received a letter from my GP's surgery. It states that this change was imposed after taking into account a review of my notes, which is a barmy notion tantamount to a lie, as the surgery has told me time and time again that they have no access whatsoever to my hospital notes, which are the ones that count, as my condition was, is, and will continue to be managed by the hospital haematology team for the rest of my life.

I also noted that the letter's footnote states "This service is funded by Abbott" who, by strange coincidence, are the makers of said Ensure Plus Advance liquid. And they are the authors of the two enclosed glossy advice leaflets.

The surgery's letter also states that they need to see me to regularly check my weight, and that I need to make a telephone appointment with a GP or GP registrar to make sure that I'm on the best management plan.

Well, no, that won't happen. Me and the hospital haematology team are in charge of my management plan, and I get weighed and see the dietitian every time I attend a consultation (currently that's once a week). We had everything under control until another cook decided to spoil the broth.

Needless to say, I'll be having stern words with someone next week. And I'll probably be telling them how to spell "banana".

As a post-script, I'll just add that I'm not too confident that the childhood vaccination process will go according to plan... the consultant haematologist told me that they send a detailed prescription letter to my GP's surgery... need I say more?

Nearly normal

Posted by on October 11th 2019 in Health, or lack thereof

I was back at LRI for another weekly haematology consultation on Wednesday (T+161). The most-recent blood tests (sampled at T+154) indicate that levels are all in their "normal" ranges. I do have an extensive red rash though, so they're plying me with steroid pills for a second week. They're happy with the weight-gain progress, and the target weight has been revised. I've given up asking them to check my serum ferritin level but I'm fairly confident that it's going in the right direction.

No bloods taken this week, not sure it that's due to confidence or cost-saving.

Poor timing and high mileage

Posted by on September 20th 2019 in Health, or lack thereof

T+140 (Wednesday) and I was back at LRI yet again, this time for only the mandatory weekly dressing of my Hickman Line. I wasn't booked in for a consultation and for bloods & observations, they did them anyway.

It's somewhat ironic that what they didn't do was the mandatory weekly line-dressing.

To be fair, on T+140 they did make a plan to remove the line on T+141 (yesterday). So two appointments in two days***. Why they couldn't have made that plan when I attended last week so that I could have had the line out on T+140 is a mystery.

While I was waiting for the staff to line up their ducks, I had a rummage through the contents of the information display, and found two Anthony Nolan info-cards. It was the first time I'd seen them, copies were not included in the info pack given to me pre-transplant:

 

 

You'll note their first bullet-point regarding the sharing of my donor's location, age and gender. Well, it's a tad late for that, they should have told me way back when the process started, before I posted this back in April.

*** "... two appointments in two days" becomes three appointments in three days when factoring in the fitting of a 72-hour heart monitor today at a different Leicester hospital, and rises to four in six days when considering the monitor removal appointment three days later. My carbon-footprint now looks like a KLETS sole with Blakey's Segs.

Steady as she goes

Posted by on September 12th 2019 in Health, or lack thereof

T+133 yesterday and I was back at LRI for another weekly haematology consultation and another bone marrow aspiration (no trephine this time). It seems that I'm doing quite well - they stopped the "you'll probably be on these forever" anti-rejection Ciclosporin, stopped the Folic Acid and told me that the Isavuconazole can stop when I've finished taking my current stock. Bloods are good, and the Serum Ferritin is decreasing without provocation.

Of course, all this means that I'll be taking a managed risk from now on, but I'm sure that they will be there to catch me if my parachute fails.

They're pleased that I've arrested the weight-loss but say that I still need to work at putting on a few more pounds each week. If I start losing again, I'll be admitted and fed via a "nose-hose" (nasogastric tube). The advice from my haematologist and from my dietitian is to "eat lots of crap food", which flies in the face of the healthy-eating advice given by the cardio team. I think I've struck a fair balance... I'm getting decent mileage from large doner kebabs with salad and chili sauce, and the... ahem... occasional Guinness 🙂

I must admit that I'm perplexed by their parameters for my weight-increase efforts... my current weight and BMI are well within the healthy range for a bloke of my age, height, ethnicity and activity level, yet they have set a target well above the NHS guidelines, and the cut-off for the "nose-hose" is slap-bang in the middle of the healthy range.

Maybe they're fattening me up for Christmas?

Ups and downs

Posted by on August 23rd 2019 in Health, or lack thereof

T+114 today and I was back at LRI for a haematology consultation and a fourth and final dose of IV Rituximab. During Wednesday's cardiology consultation at Glenfield Hospital I was told that my lack of get-up-and-go was due to me being anaemic, but today the LRI doc told me that I'm not. Today's Hb level was 109 g/L, and normal is 130-180 g/L, so go figure.

Platelets and WCC are both the highest they've been since 2015, and neutrophils are holding steady in the middle of the normal range, so that's all good. Serum ferritin, however, is at an all-time high, so high that I've had to extend the y-axis on the charts. The most recent test has the level at a whopping 4201 × 10-6 g/L (normal is 15–350 × 10-6 g/L, preferred is 50–200 × 10-6 g/L) but they say that I can't start venesections to reduce the level until next year which means living with the effects for a while yet.

The Glandular Fever has resolved, so they've decided that I won't need those incredibly-expensive Epstein-Barr Virus (EBV) Specific Cytotoxic T-Cells after all.

You'll have to excuse me now - I need to get back to the feeding regime... I need to take in at least 2000 calories a day just to maintain my reduced body-weight, and they'd like me to up that to at least 2200 a day to help me to regain 15kg of the 30kg that I've lost since the start of the year. I seem to spend most of my waking hours scoffing or crapping. I'm not short of suitable food and drink but having an appetite and functional taste-buds would help.

Beyond 100 Days

Posted by on August 13th 2019 in Health, or lack thereof

Started to get bad nausea and for a few days I was unable to swallow and/or keep down all of my pills, so we called it in on T+99 and they admitted me to Ward 41. After a bit of TLC they moved me to BMTU on T+102 so that they could give me another bag of Rituximab (my EBV markers count had gone up to new heights ~ 40 million). Because the Rituximab's not working as soon or as well as expected, they are considering plying me with a different drug - Epstein-Barr Virus (EBV) Specific Cytotoxic T-Cells (made in Australasia, stored in Scotland) - to give my new T-Cells a kick up the ass.

It's been a boring few days - I'm not confined to the building but I had a fair few things planned for the weekend and for this week, and it's all gone to shit.