In the first 4-6 weeks, I had days when I felt very tired and needed to spend the day on the couch and others when I had energy to garden, do Tai Chi, see a friend, go for a short walk or spend hours at the hospital… But not all at once, or even all in one day. I could manage one activity a day and I would be tired and sleepy afterwards and had back-ache most days. But the hospital days, Thursdays, were so very tiring that I didn’t attempt to do anything at all on Fridays.
The worst thing I had to deal with was a loss of appetite/disinterest in food, queasiness/nausea and indigestion. I had various pills to take, which helped to varying degrees against the latter two, but nothing helped with the appetite loss. Apparently it’s due to a reaction to one of the drugs I was taking.
Ah yes, the drugs…
In the first week out of hospital, I was taking 41 tablets every day. That didn’t include any additional pain relief…
That was 41 tablets EVERY day!
To accommodate them all, I had to buy a second set of pill boxes.
The photo shows one day’s supply.
Ciclosporin = 190mg twice a day = (3 x 50mg, 4 x 10mg) x 2 = 14
Mycophenolate = 1g three times a day = (2 x 500mg) x 3 = 6
Penicillin = 250mg twice a day = 250mg x 2 = 2
Aciclovir = 800mg four times a day = (4 x 200mg) x 4 = 16
(Actually the photo shows one 800mg tablet, but I found these difficult to swallow, so preferred 4 x 200mg)
Fluconazole = 50mg once a day = 50mg x 1 = 1
Ondansetron = 8mg twice a day = 8mg x 2 = 2
Ciclosporin – the main immune suppression medication, to keep my own T-cells down. This ensures my body does not reject the new cells while they settle in. The level of Ciclosporin in my system was being checked twice a week, now once a week, and the dose was altered in response to the results, to ensure the correct dosage in my body.
I started on 190mg twice a day. It went down to 150mg, 125mg, 110mg, 100mg and then to 75mg twice a day. This didn’t mean they were reducing the actual dose within my body, just that how my body processed the medication meant they had to give me less and less to provide the same level of immune-suppression. They have now begun to reduce the actual dosage as part of the weaning off process.
Mycophenolate – the other immune suppression medication I had to take to prevent rejection of the new stem cells. This works on T-cells and B-cells, both part of the normal immune system. They have recently reduced the dose over a period of four weeks, from 1000mg, to 750mg, to 500mg, to 250mg and now I’m off it altogether. Fortunately, my appetite and queasiness have improved noticeably since coming off them. I’m still a little wary or disinterested in some foods, particularly meat and rich foods or those with strong smells. It will take a while.
Water – Because there was so much Ciclosporin in my system, which can cause kidney dysfunction, and the blood tests showed that my kidney function was suffering, I was advised to drink 3 litres of water a day. That is a LOT of water, especially when you’re feeling queasy. I literally had to keep drinking throughout the day, to the exclusion of most other activities, other than the obvious – frequent running to the toilet. There was one morning when I was drinking and peeing at the same time and I did wonder if it wouldn’t be easier to just pour the water down the toilet.
Obviously, the whole point of the exercise is for it to flow through me and keep flushing my kidneys. However, I felt like I was physically drowning and it made me feel sick, not to mention leaving no room for food. Fortunately, after a week or so, my consultant said that 2 litres a day would be sufficient. What a relief! Even this was enough of a challenge. I don’t think I’m even drinking two litres a day now, but my kidney function is now doing well according to the weekly blood tests.
Penicillin, Aciclovir & Fluconazole – Antibiotic, anti-viral and anti-fungal – all taken as prophylactics, i.e. to prevent me from getting any bacterial, viral or fungal infections, rather than to treat them. I stopped taking Fluconazole after a couple of weeks, but will be on antibiotics and anti-virals for about a year.
In the first few weeks, until my blood counts returned to a normal level, I had to avoid a number of foods similar to those pregnant women are advised to avoid: raw fish or meat, raw eggs, unpasteurised and blue cheeses, mushrooms, peppercorns. Some of these carry a risk of infection, while others contain live bacteria or fungi. I was also told to wash all fruit and vegetables really thoroughly if I couldn’t peel them. Strangely, this meant that highly pesticided or even irradiated foods were probably safer for me than my usual preference these days of organic, where bacteria and wee beasties can flourish.
Anti-nausea medication – To help with the stomach/digestion/nausea issues, I tried a variety of tablets, in a variety of combinations… Ondansetron, then Ondansetron with Metoclopramide, then I added Lansoprazole to the mix, then left off Ondansetron, then was prescribed Domperidone, which I tried without and with Lansoprazole. I got to taking Ondansetron twice a day and Domperidone three times a day, which I tentatively thought might have been the most effective, but I became so nervous around food, that it was difficult to judge how well they were working.
Often when I ate, I got a butterfly feeling in my stomach and I was never quite sure if it was due to nervousness or a nausea response. I finally gave up with any anti-nausea tablets and found there was no difference if I took nothing. The biggest difference of course was coming off Mycophenolate, but it was hard going while I was on it.
Temperature – After my initial week of feeling energetic and surprisingly well, I had several weeks of not only getting tired and sleepy in the early evening, but also frequently feeling cold and shivery inside on evenings when I’ve been active during the day. It was a strange feeling, as I wasn’t usually cold on the outside. I needed to curl up on the couch with a thick sweater and sweat pants on, put on the central heating and cover myself with a warm blanket and I was still shivering.
I am generally over the shivering but I still feel more sensitive to both hot and cold… During the odd moments of summer we had several weeks ago, I couldn’t sit out in the sun without feeling it as burning my skin. I had already been instructed to use a high protection sun lotion (at least factor 30) which I was doing, due to the increased risk of skin cancer from the Total Body Irradiation. I found I needed to wear a hat and pretty much stay in the shade. In the past, I have relished lying in the sun for days and tanning easily. It may seem like a small sacrifice and much more sensible behaviour, but I felt robbed of an enjoyable activity and something pleasurable became another… of stress.
As for the cold, I think I may have had a degree of peripheral neuropathy… When I washed my hands or took a shower, I found I was almost phobic of cold water, yet warm water often felt really hot and stinging, like the chilblain feeling you get when you’ve been outside in the depths of winter and you return to a heated house and your fingers and toes get a tingling, burning sensation.
I’m sure some of the reactions to temperature were exacerbated by the dreadful cold and wet weather we had up until about a week ago.
Also on the temperature front… there was again a requirement to monitor my temperature if I experienced any symptoms of infection. Like last year, I had instructions to call the hospital if it went up to 38°C. Strangely, my ‘normal’ temperature was very low, around 36°C. Several weeks ago I had a cold and was taking my temperature every few hours just to be safe. Happily, it only went up to 37.4°C, so there was no need to be admitted to hospital.
Even more happily, in view of what is happening internally with the stem cells and immune suppression drugs, I had one day of coughing and sneezing, one day in bed with a lot of sleeping and the following day I felt better. That was followed by a couple of weeks of coughing, but I was delighted that having and getting over the cold took no more time, energy or level of being ill than previously!
With a suppressed immune system and brand new ‘baby’ stem cells, which haven’t had any exposure to bacteria or viruses, the antibodies required to fight off an infection just haven’t developed. So it is very common for people in the first few weeks post-transplant to have to go back into hospital once or twice due to infections, as I did last year after the auto transplant. So not having to return to hospital and getting through a cold in a fairly ‘normal’ manner is actually quite remarkable. Something most ‘normal’ adults don’t even have to consider. I am of course delighted.