The 6-week mark after the transplant is another milestone. First was the 1-week mark, the 1-month mark and now this. 6 weeks (at my particular hospital) is the time that one of the strongest of anti-rejection drugs is dropped, and luckily for me, it's the Neoral, the one that causes me the outrageous headaches. I went from a dosage of 250mg 2x per day last week and then down to 175mg 2x per day at this point. Indeed the intensity of the headaches from the Neoral diminished. They are still lurking, the headaches, but that's all they're doing. They are not agonising, just tiring, bothersome.
I was sure I was told by one doctor that I would be dropping the Prednisone, too - from 10mg per day to 5mg per day. As this is the night sweats and high-glucose offender, I was very hopeful and excited to go in to the hospital. Alas, my doctor was out, and I had another doctor tell me that he reduced the Prednisone not in 6 weeks, but in 3 months - and to 7.5mg, not 5mg. Okay, okay..I don't mind to what dosage it's dropped, but the time discrepancy seems odd. Still, it's better to be safe and I can't really question what the best thing is. I'd obviously rather keep my kidney and deal with the insulin shots and night sweats.
Wednesday, January 28, 2009
Friday, January 23, 2009
Day 37: The one long headache is diminishing
With that drop in the Neoral two evenings ago, I have instantly noticed that my headaches have gone down to a dull roar and that my sleeping is better (fewer night sweats) and my water-retention swelling is less. Next Thursday the Neoral will drop down even more - and, excitingly, also the Prednisone. That's the one that causes my blood sugar to rise. I will be excited to see how good I feel, because let me tell you, I'm on some kind of natural high at the moment.
Life is suddenly in 3D! I have a lot of giddy, giggly energy. I can dance around the room and make Gary laugh. I can be my goofy, silly, immature self and jump on the bed without that cumbersome P.D. catheter! I did some lovely yoga and breathing last night when Gary was out and I felt so liberated, so free from constraints, tiredness, apathy. I felt really connected to my breathing, to the stillness after the rain, to the candlelight in the room, to the gratitude of the passing moments of life.
My eyes are sparkly. When did this go away? It's such a gradual process, kidney disease. It's hard to notice the signs of deterioration. I now recall some specific times when some changes occurred. I'd put them down to being 40, to losing my father - both in the same year. This was the year I started napping every day before going to my evening job. This was the year when I told my mother that I didn't ever go out except for work and necessities. That I liked to stay in, sewing and creating, listening to music and reading, lots of sleeping. That I liked to close the curtains on the day. She told me I was too young for that kind of attitude. But I lived in LA..a hub of chaos which didn't agree with me. I wanted to close the curtains on the hot, smoggy day and be in my cave of creation. Now I wonder: was this part of the disease too? This cocooning? I noticed a lot of cocooning after the dialysis. And I thought I'd have the same desire after the transplant, but it just isn't so. Voracious is the new word. I just want to be sure to balance it with that yoga feeling I had last night.
Life is suddenly in 3D! I have a lot of giddy, giggly energy. I can dance around the room and make Gary laugh. I can be my goofy, silly, immature self and jump on the bed without that cumbersome P.D. catheter! I did some lovely yoga and breathing last night when Gary was out and I felt so liberated, so free from constraints, tiredness, apathy. I felt really connected to my breathing, to the stillness after the rain, to the candlelight in the room, to the gratitude of the passing moments of life.
My eyes are sparkly. When did this go away? It's such a gradual process, kidney disease. It's hard to notice the signs of deterioration. I now recall some specific times when some changes occurred. I'd put them down to being 40, to losing my father - both in the same year. This was the year I started napping every day before going to my evening job. This was the year when I told my mother that I didn't ever go out except for work and necessities. That I liked to stay in, sewing and creating, listening to music and reading, lots of sleeping. That I liked to close the curtains on the day. She told me I was too young for that kind of attitude. But I lived in LA..a hub of chaos which didn't agree with me. I wanted to close the curtains on the hot, smoggy day and be in my cave of creation. Now I wonder: was this part of the disease too? This cocooning? I noticed a lot of cocooning after the dialysis. And I thought I'd have the same desire after the transplant, but it just isn't so. Voracious is the new word. I just want to be sure to balance it with that yoga feeling I had last night.
Thursday, January 22, 2009
Day 35: Drugs are being dropped and life is good
Today I had my weekly appointment & blood draw with the transplant hospital, LUMC. I had mentioned the headaches last week and today, Dr. De Vrees asked me if I am still having them. The answer is a solid YES. I also said 'I know my body and I'm retaining some water and am having all of the other side-effects from too high of a dosage'. He agreed that it was too high and said that next week it would be decreased from 250mg, 2x per day to 200mg, 2x per day. I left the hospital counting the days.
I had a phone call from him later, saying he'd checked my blood levels and that it is indeed too high. I was advised to take 50mg less per day at a dosage of 225mg, 2x per day. I am very happy about this and feel my confusion and frustration becoming less and less.
I had a phone call from him later, saying he'd checked my blood levels and that it is indeed too high. I was advised to take 50mg less per day at a dosage of 225mg, 2x per day. I am very happy about this and feel my confusion and frustration becoming less and less.
Friday, January 16, 2009
Day 30: Removal of the Pigtail / Double J Catheter
I'm sure some of you don't really want to read the in depth medical stuff, but then again, it's informative to others - hopefully future transplant patients. So if the idea of a catheter being removed from my urethra bothers you, do not bother to read this particular blog. I, myself, am becoming not only immune to the feelings of medical fear I once used to experience, but rather intrigued by the procedures, especially when I have them done at my local hospital where the environment is pleasant and clean and the staff friendly. I am treated as an intelligent woman and as an equal; there is not that strange power play between doctor and patient.
As I understand it, during my transplant surgery, a Double J or Pigtail catheter, was inserted to retain the structure of the surgically constructed drain from the new kidney to the bladder.
Today I had the catheter removed. I was very nervous indeed. It was the unknown that made me nervous. My understanding of it is less than perfect; I tried to do internet research on these catheters, to not much avail. My lack of Dutch has prevented me from a lot of information that I would perhaps otherwise have. And then again, sometimes doctors can be known to be a little vague, yes? Especially when they consider the procedures to be small stuff compared with transplants.
And you know what? It was pretty easy. It was no worse than my dreaded gynecological exams. Maybe better. The staff made it easier: they all burst into laughter when I told them I was nervous. 'With what you've been through? Oh, Mevrouw!!' The doctor was very helpful with his exclamations of 'Beautiful! It's healed wonderfully!' when he looked at the screen that showed the inside, where the catheter was. He then offered 'Would you like to see?' Now he appealed to my interests: just show me what's happening! What I discerned from the visual and his explanation was that during the surgery, a new hole was made to carry the urine from my new kidney and into my bladder. To give this hole structure, the catheter had to remain in place for some time. It all made sense now. I was quite pleased with the whole thing. And then the next thing I knew, after a few strange sensations, the catheter was indeed out and the doctor said 'Congratulations! This was the final stage of post-operative care. You are on your own now!'. That's what every patient wants to hear. Liberation! My own kidney!! A beautifully healed structure. Pigtail Catheter, you are a wonder.
Wednesday, January 14, 2009
Day 28: Given the green light to ride my bike again
And since I don't have a car and I live in Holland, that's a pretty good thing. Once you get used to riding a bike around here, there's nothing like it.
My doctor did tell me today that riding my bike now presents the peculiar problem of any crash potentially resulting in the handlebars going into my new organ! Is there anything they don't think of?? I suppose it's good to know - I never realised how unprotected my new kidney is, just sitting there right up front, enjoying the ride with me, not snug in the back, underneath my ribcage. I'm going to have to make sure not to follow Gary on his crazy sprints across roads, something I've never been fond of anyway.
My doctor did tell me today that riding my bike now presents the peculiar problem of any crash potentially resulting in the handlebars going into my new organ! Is there anything they don't think of?? I suppose it's good to know - I never realised how unprotected my new kidney is, just sitting there right up front, enjoying the ride with me, not snug in the back, underneath my ribcage. I'm going to have to make sure not to follow Gary on his crazy sprints across roads, something I've never been fond of anyway.
Tuesday, January 13, 2009
Day 27: Feeling like myself again...perhaps after years and years...but these Neoral headaches!!!
It's been over 20 years since my kidney function was this good. It's hard to say what kind of daily impact that has on a body, on the day to day physical condition. I do know that even in these very early stages (the surgery was 4 weeks ago today), my energy level is much better than I can remember. I am so used to be in a half-state of tiredness. If I'm tired these days, it's assuredly due to the vast number of drug side-effects:
I have these incredibly bad 24-hour-a-day headaches that escalate into excruciating migraines by night because of the Neoral (one of the immunosuppressants). These evil headaches begin as soon as I wake - at the base of my neck, only on my left side, and by about 8 or 9pm have begun to creep slowly up the entire left side of my head, travelling down to end at my left eye. By 11pm, the pain is so bad that I'm in agony. I have tried Paracetemol and Tylenol (the same products) to no avail. I mentioned the headaches to my doctor yesterday; he wasn't surprised, but simply said that I have 2 more weeks before he decreases the dosage by half. I'm currently on 500mg of Neoral per day, a pretty normal amount for my weight.
I can't wash my hands in anything but cold water these days, as hot water makes me feel as if I have had frostbite. It's another side-effect, called 'hyperesthesia', basically hyper-senstivity. So it's that ice-cold winter water from the tap that feels most normal to my hands.
I also have these charming nightly night-sweats due to the Prednisone (another immunosuppressant). Another side effect is the raised glucose that I wrote of before that makes insulin injections temporarily necessary (both the aforementioned Neoral and the Prednisone are the nasty little culprits). Thankfully, the dosage of the Prednisone will go down from 10mg per day to 5mg per day in 2 weeks.
It's enough to make anyone tired.
I just keep thinking this: whatever it takes to keep this kidney from being rejected is what I have to do for this short time. Besides, after waking up in that hospital and realising how much had happened during the surgery is enough to make a person deal with almost anything else. :)
I have these incredibly bad 24-hour-a-day headaches that escalate into excruciating migraines by night because of the Neoral (one of the immunosuppressants). These evil headaches begin as soon as I wake - at the base of my neck, only on my left side, and by about 8 or 9pm have begun to creep slowly up the entire left side of my head, travelling down to end at my left eye. By 11pm, the pain is so bad that I'm in agony. I have tried Paracetemol and Tylenol (the same products) to no avail. I mentioned the headaches to my doctor yesterday; he wasn't surprised, but simply said that I have 2 more weeks before he decreases the dosage by half. I'm currently on 500mg of Neoral per day, a pretty normal amount for my weight.
I can't wash my hands in anything but cold water these days, as hot water makes me feel as if I have had frostbite. It's another side-effect, called 'hyperesthesia', basically hyper-senstivity. So it's that ice-cold winter water from the tap that feels most normal to my hands.
I also have these charming nightly night-sweats due to the Prednisone (another immunosuppressant). Another side effect is the raised glucose that I wrote of before that makes insulin injections temporarily necessary (both the aforementioned Neoral and the Prednisone are the nasty little culprits). Thankfully, the dosage of the Prednisone will go down from 10mg per day to 5mg per day in 2 weeks.
It's enough to make anyone tired.
I just keep thinking this: whatever it takes to keep this kidney from being rejected is what I have to do for this short time. Besides, after waking up in that hospital and realising how much had happened during the surgery is enough to make a person deal with almost anything else. :)
Saturday, January 10, 2009
The more news coverage, the better for others
Publications & stations who covered the story in the UK:
East Anglian Daily Times - in August 2008, which is how Tim found my story, and again in December 2008, as a success story
BBC Radio 5 - live interview with Tim and myself
BBC Radio Suffolk - recorded interview with Tim and myself
Anglia News (television interview with Tim)
The Sun
Daily Mail
The Mirror on Sunday
People UK
Skegness Standard
Channel 4.com
Thursday, January 8, 2009
Day 22: A good hospital visit, at last!
Oh, I had such a good visit at the hospital today. There's something so gratifying about seeing a doctor you've seen before. Until now, I've seen so many different doctors - each one of them looking only at my chart for information. It can be frustrating. But today was liberating.
It was great to have confirmation that, due to my being a relatively young kidney transplant recipient, I am on a higher regime of drugs and therefore subject to more side effects and a much more complex system of drug self-administration. I have been feeling overwhelmed. All I needed was the recognition that it is indeed difficult.
The fact that I am able to care for myself to a large extent has resulted in the hospital designating the insulin shots to me - whereas, he said, with people who can't or won't do it, the glucose is largely left to its own devices for the relatively short duration of the high steroids. But that's a month's worth of toxicity. After all I've strived for, I just don't want that. I'm glad I can do things myself and it made me really take pride in the whole situation - something that always saves me in these crazy times.
One of my prednisone tablets (a strong corticosteroid that makes my blood sugar levels really high) was dropped today. Now I'm on 10mg per day instead of 15mg yesterday and 20mg a week ago. It's already alleviated the blood sugar levels - I have given myself no insulin injections yet today and my glucose levels have been fairly stable. And after the 27th of January, I will go down again to 5mg per day. I think it might work out after all that I won't need insulin, only tablets to help. Very exciting!
It was great to have confirmation that, due to my being a relatively young kidney transplant recipient, I am on a higher regime of drugs and therefore subject to more side effects and a much more complex system of drug self-administration. I have been feeling overwhelmed. All I needed was the recognition that it is indeed difficult.
The fact that I am able to care for myself to a large extent has resulted in the hospital designating the insulin shots to me - whereas, he said, with people who can't or won't do it, the glucose is largely left to its own devices for the relatively short duration of the high steroids. But that's a month's worth of toxicity. After all I've strived for, I just don't want that. I'm glad I can do things myself and it made me really take pride in the whole situation - something that always saves me in these crazy times.
One of my prednisone tablets (a strong corticosteroid that makes my blood sugar levels really high) was dropped today. Now I'm on 10mg per day instead of 15mg yesterday and 20mg a week ago. It's already alleviated the blood sugar levels - I have given myself no insulin injections yet today and my glucose levels have been fairly stable. And after the 27th of January, I will go down again to 5mg per day. I think it might work out after all that I won't need insulin, only tablets to help. Very exciting!
Wednesday, January 7, 2009
Some pictures of Tim, my fantastic donor - and TV news clip
Here's Tim on the train, pre-surgery. He looks pretty calm.
And then after the surgery. This guy.. thumbs up indeed! I didn't look this good after my surgery, believe me.
Day 21: Nobody told me there'd be days like these
That's the line from a song of John Lennon's. It pretty much sums up how I feel about this time period. It's a time that I feel I should be celebrating. But there is so much to do..there is no time to relax, no time to even really heal. It's quite complex.
I have been to the hospital 3 times already this week - and it's only Wednesday. I went on Sunday morning for 5 hours, Monday for 6 hours and yesterday for 5 hours. These are all early morning appointments, for which I have had to get up in the dark and walk slowly through the snowy cold to the train station. I usually ride my bike, but I can't do so now for 6 weeks or more.
I have gained a lot of water weight in the last week, 3 kilos to be exact. That's 6.6 pounds. And they haven't been able to figure out what it could be from. My kidney function is going well - for that I am incredibly grateful, for a myriad of reasons. But I shouldn't be retaining fluid. They gave me antibiotics to stave off an infection - now I'm on 3 separate types of antibiotics, (this is incredibly ironic, given my years of attention to things like 'healthy flora' and all things natural).
So to check the levels of steroids in my system and make sure that the anti-rejection drugs aren't too strong, they gave me a test on Monday that involves taking my blood every hour for 4 hours. I was told not to take the medications that morning.
I have very bruised veins at the moment, so they left a needle in my arm for the duration of the testing. I walked slowly outside for fresh air for a bit, unable to move my right arm. By the time the test was over, my hand had swelled a lot from the needle. I couldn't wait to have it out. I asked 'Should I take my medication now?' The response was 'But didn't they tell you?? You were supposed to take it after the first blood test this morning. Now the test is invalid. We have to do it again tomorrow.'
I was so wiped out. I got out of there, really upset that the information hadn't been given to me by the doctor or the nurse or the blood technician. And I was so tired that I ended up getting on a wrong train and ending up in Schipol Airport instead of gentle Haarlem. It took an hour and a half longer to get home.
Yesterday I did the test again. This time I insisted that I lie down during the breaks. I took a book and lots of snacks. It was a lot easier. Especially since I'd been given the correct information, how refreshing!
I have been to the hospital 3 times already this week - and it's only Wednesday. I went on Sunday morning for 5 hours, Monday for 6 hours and yesterday for 5 hours. These are all early morning appointments, for which I have had to get up in the dark and walk slowly through the snowy cold to the train station. I usually ride my bike, but I can't do so now for 6 weeks or more.
I have gained a lot of water weight in the last week, 3 kilos to be exact. That's 6.6 pounds. And they haven't been able to figure out what it could be from. My kidney function is going well - for that I am incredibly grateful, for a myriad of reasons. But I shouldn't be retaining fluid. They gave me antibiotics to stave off an infection - now I'm on 3 separate types of antibiotics, (this is incredibly ironic, given my years of attention to things like 'healthy flora' and all things natural).
So to check the levels of steroids in my system and make sure that the anti-rejection drugs aren't too strong, they gave me a test on Monday that involves taking my blood every hour for 4 hours. I was told not to take the medications that morning.
I have very bruised veins at the moment, so they left a needle in my arm for the duration of the testing. I walked slowly outside for fresh air for a bit, unable to move my right arm. By the time the test was over, my hand had swelled a lot from the needle. I couldn't wait to have it out. I asked 'Should I take my medication now?' The response was 'But didn't they tell you?? You were supposed to take it after the first blood test this morning. Now the test is invalid. We have to do it again tomorrow.'
I was so wiped out. I got out of there, really upset that the information hadn't been given to me by the doctor or the nurse or the blood technician. And I was so tired that I ended up getting on a wrong train and ending up in Schipol Airport instead of gentle Haarlem. It took an hour and a half longer to get home.
Yesterday I did the test again. This time I insisted that I lie down during the breaks. I took a book and lots of snacks. It was a lot easier. Especially since I'd been given the correct information, how refreshing!
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