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!
Tuesday, December 30, 2008
And...the Publicity!! Radio 5 - BBC this morning.
The U.K. has really picked up on our story. We were featured in several Sunday papers, including the Daily Mail, News of the World, The Mirror and Channel 4. Yesterday we were on page 19 of The Sun, the biggest tabloid in the U.K., (complete with very bad photo of me in the hospital looking wiped out!). Radio 5 is about to call this morning to do a live interview with me and Tim. Tim was on television yesterday, too. He is now famous for doing this, something that will hopefully spur on the idea that, for the right person, donation can be a positive experience.
I intend to try to direct the conversation this way when interviewed this morning. After all, this story is no longer really about 'us', but about the chance for other people to see that donation to a stranger is a chance for both parties to be rewarded - not only in health, but in the power of human giving and receiving.
http://www.thesun.co.uk/sol/homepage/news/article2075547.ece
I intend to try to direct the conversation this way when interviewed this morning. After all, this story is no longer really about 'us', but about the chance for other people to see that donation to a stranger is a chance for both parties to be rewarded - not only in health, but in the power of human giving and receiving.
http://www.thesun.co.uk/sol/homepage/news/article2075547.ece
Day 13: The Ups and Downs of Post Transplant Care
It is very difficult for me these last few days..I am feeling guilty to be depressed at all. How can I, when a man gave me his kidney only two weeks ago tomorrow? But I am depressed, none the less.
The amount of drugs I am on, combined with the myriad of nasty side-effects, is unreal. The hardest of these side effects is that I now have a case of diabetes, brought on by two of the anti-rejection drugs. This means that I now have to take my blood sugar (by pricking my finger with a needle) 4 times per day, and inject insulin into my leg also about 4 times a day. When my blood sugar is elevated, I get nervous, hot and jittery, making putting a needle into my leg just about the most abhorrent thing I can imagine doing.
Also - this week has been rife with doctor's appointments, hardly the thing I want to be doing when I was expecting to be able to rest. I went yesterday to the transplant hospital, LUMC. I had blood drawn twice, as one of my veins 'froze' (probably in fear for its life!). I go today to a diabetic doctor at my regular hospital, thank goodness, as it's closer than LUMC. Then tomorrow back to LUMC. It's exhausting!
Meanwhile, poor Gary is back and forth to the apotheek (pharmacy), fetching numerous doses of drugs for me, and escorting me to the hospital, all on his days off work!
I am hopeful that things will eventually stabilize and I will be off the insulin, but I've had conflicting reports, which never helps.
Who would have thought that the dialysis would be easier than this? Not I. But this is long-term health as opposed to a temporary fix. For this, and my new kidney, I am grateful, if grumpy.
The amount of drugs I am on, combined with the myriad of nasty side-effects, is unreal. The hardest of these side effects is that I now have a case of diabetes, brought on by two of the anti-rejection drugs. This means that I now have to take my blood sugar (by pricking my finger with a needle) 4 times per day, and inject insulin into my leg also about 4 times a day. When my blood sugar is elevated, I get nervous, hot and jittery, making putting a needle into my leg just about the most abhorrent thing I can imagine doing.
Also - this week has been rife with doctor's appointments, hardly the thing I want to be doing when I was expecting to be able to rest. I went yesterday to the transplant hospital, LUMC. I had blood drawn twice, as one of my veins 'froze' (probably in fear for its life!). I go today to a diabetic doctor at my regular hospital, thank goodness, as it's closer than LUMC. Then tomorrow back to LUMC. It's exhausting!
Meanwhile, poor Gary is back and forth to the apotheek (pharmacy), fetching numerous doses of drugs for me, and escorting me to the hospital, all on his days off work!
I am hopeful that things will eventually stabilize and I will be off the insulin, but I've had conflicting reports, which never helps.
Who would have thought that the dialysis would be easier than this? Not I. But this is long-term health as opposed to a temporary fix. For this, and my new kidney, I am grateful, if grumpy.
Friday, December 26, 2008
Day 8: But later on that night...
At 5pm my blood sugar was so elevated from the Prednisone (23.9 instead of my usual 5.0 or 6.0) that I called the hospital. I was asked to come in. That's a 20 minute train journey. On Christmas night..a very cold one indeed. Gary and I were forced to walk to the train station and take the train to the hospital. It was a difficult walk for me. Thank goodness I have him. What if I lived alone? A cab would be 50 euros or something, perhaps more on a holiday night.
So we arrived at the hospital and honestly, I'm glad we went because they trained me how to give myself the insulin shots. It's actually very easy and pretty painless as I insisted on the very smallest needles they have. It's less painful than pricking my finger to test the glucose - how ironic. Well, it was a several hour process, all in all, and we arrived home without much to say to each other, we were that tired. An odd Christmas, to be sure, but at least we have our health.
So we arrived at the hospital and honestly, I'm glad we went because they trained me how to give myself the insulin shots. It's actually very easy and pretty painless as I insisted on the very smallest needles they have. It's less painful than pricking my finger to test the glucose - how ironic. Well, it was a several hour process, all in all, and we arrived home without much to say to each other, we were that tired. An odd Christmas, to be sure, but at least we have our health.
Thursday, December 25, 2008
Day 8: Home for the holidays!
I'm home, I'm happy and my new kidney is working like a trooper. I am so thankful for my fantastic donor and am thrilled whenever i get messages from him that he is a hero in his local village, beers bought for him wherever he goes. Yay, Tim!
In a few days, the East Anglian Daily Times will run a follow-up story on the transplant and I'll be able to post photos of Tim and me together, post-operation. Very exciting.
And, to top it all off, Gary is making a 3-course meal and since he's such a fantastic cook and my appetite is back (raging, actually), I can't wait until 'Gary's Bistro' is open for dinner.
Happy holidays to everyone!
xx
In a few days, the East Anglian Daily Times will run a follow-up story on the transplant and I'll be able to post photos of Tim and me together, post-operation. Very exciting.
And, to top it all off, Gary is making a 3-course meal and since he's such a fantastic cook and my appetite is back (raging, actually), I can't wait until 'Gary's Bistro' is open for dinner.
Happy holidays to everyone!
xx
Monday, December 22, 2008
Day 5: More good news!
What a healthy donor! My creatinine, (a protein that is filtered by the kidneys, so measures the kidney function) is, as of yesterday, in a normal range. It is apparently very good to be this far ahead only 5 days after surgery. I am super excited; it's hard to lie here in the hospital bed much..i keep walking around the ward - not much to see. And thankfully the donor was allowed to go home today. I miss him already. Walking down to his ward was the highlight of my time in here. I'ts pretty hard to be in the timeless capsule in comparison with Christmas coming in the outside world.
That said, I should be out for Christmas! Maybe even Christmas Eve. I can't wait to go home and see some twinkly lights and the sparkly eyes of my lovely man.
And my poor pussycat, she's all afluster. She misses me and doesn't know where I am. I shall greet her with kisses and purrs of my own and tell her not to jump on my sore belly!
That said, I should be out for Christmas! Maybe even Christmas Eve. I can't wait to go home and see some twinkly lights and the sparkly eyes of my lovely man.
And my poor pussycat, she's all afluster. She misses me and doesn't know where I am. I shall greet her with kisses and purrs of my own and tell her not to jump on my sore belly!
Friday, December 19, 2008
Day 2: 2 days after surgery
I'm sitting up in bed. It's a sunny afternoon with clouds scatttered through the sky. I have a strange back view of the hospital - not the prettiest of hospitals. It is a gray, concrete prison-like structure, with dirty blue and yellow bars that are supposed to be balconies. I can't imagine anyone hanging around outside, as the windows don't open.
The surgery: it lasted 5 hours. According to the nurses, the surgery could have taken 1 & 1/2 -3 hours, but after they connected the kidney, it turned an unhealthy gray. It was then removed, they took out a blood clot that the kidney had formed upon removal, and then put it back in again. This time, it was pink and healthy. Only then did they connect it and close me, thank goodness.
I woke up in a special room - a post-op theatre, maximum 5 patients. I knew it was a big surgery when I woke. I had so many tubes and catheters. A needle in my hand for the infusion. A needle/tube in my neck. A catheter in my abdomen that is a blood drain to a murky bloody bag. Another bag that is a drain for the urine; it's connected to a urinary catheter.
It was strange being so aware of the hugeness of the operation. Of course I was on Morphine, and time floated by so that the 14 hours I was in there seem like nothing at all, but I still find it strange that I was awake enough at some point to ask for a magazine. I remember reading some of one; it was difficult to hold the magazine, but I even recall some of the content; it was about breast cancer and it made me think of another woman I know who is writing a blog about breast cancer in her 20s.
I have to take masses of anti rejection drugs that are pumped in to my i.v. in my hand. I had an infusion of liquids going in to my neck; those tubes were taken out today and I feel more human.
I've had loads of visits from my mum and my boyfriend. They brought in some sweet tee shirts and a new dressing gown so I feel pretty again.
I'm super glad it's all going well and hope for it to continue. My donor is doing well. I can't see him much as he's down the hall and I can't walk there yet. He's come to visit a couple of times even though it hurts him somewhat..what a guy.
The surgery: it lasted 5 hours. According to the nurses, the surgery could have taken 1 & 1/2 -3 hours, but after they connected the kidney, it turned an unhealthy gray. It was then removed, they took out a blood clot that the kidney had formed upon removal, and then put it back in again. This time, it was pink and healthy. Only then did they connect it and close me, thank goodness.
I woke up in a special room - a post-op theatre, maximum 5 patients. I knew it was a big surgery when I woke. I had so many tubes and catheters. A needle in my hand for the infusion. A needle/tube in my neck. A catheter in my abdomen that is a blood drain to a murky bloody bag. Another bag that is a drain for the urine; it's connected to a urinary catheter.
It was strange being so aware of the hugeness of the operation. Of course I was on Morphine, and time floated by so that the 14 hours I was in there seem like nothing at all, but I still find it strange that I was awake enough at some point to ask for a magazine. I remember reading some of one; it was difficult to hold the magazine, but I even recall some of the content; it was about breast cancer and it made me think of another woman I know who is writing a blog about breast cancer in her 20s.
I have to take masses of anti rejection drugs that are pumped in to my i.v. in my hand. I had an infusion of liquids going in to my neck; those tubes were taken out today and I feel more human.
I've had loads of visits from my mum and my boyfriend. They brought in some sweet tee shirts and a new dressing gown so I feel pretty again.
I'm super glad it's all going well and hope for it to continue. My donor is doing well. I can't see him much as he's down the hall and I can't walk there yet. He's come to visit a couple of times even though it hurts him somewhat..what a guy.
Tuesday, December 16, 2008
An hour until I leave for the hospital
Gary took the donor to the hospital this morning, which was nice so I could relax a bit at home. My friend Katherine is coming over to escort me. We'll take the train, as we only have our bicycles and it's a bit too far for that! Katherine has a lot of maternal energy and strength. I look forward to being whisked forward with her help. I have been a mess this morning, surprising myself, as I've been so strong up 'til now. I'm like a 5 year old child who doesn't want to go to school. I want my bed! I want my pussycat! I want my home! I want my sweetheart!
But this time tomorrow I'll already be in the process, so I must be strong now and go do a bit of stretching and thinking positively, just like I have this whole time. :)
But this time tomorrow I'll already be in the process, so I must be strong now and go do a bit of stretching and thinking positively, just like I have this whole time. :)
Monday, December 15, 2008
dialysis and a donor
Okay, I've known I'd had a failing kidney for years and years. And I'd secretly hoped I'd be in my eighties before hearing of end-stage kidney failure. But in May of this year I was told I'd need to go on dialysis.
They wait until you're at about 10% kidney function for this. So I imagine all these years of having compromised function.
There are 2 types of dialysis: hemodialysis and peritoneal dialysis. One is done at the hospital, the other at home. I chose to do home dialysis. It enables you to have somewhat more freedom; you are in charge of your own care to a large extent. The drawback was having a catheter placed in my abdomen, travelling down through my organs to sit down at a low point inside me to enable a daily system of removing the toxins from my body and inserting new, clean fluid to do its work.
So since July, I've done home dialysis, first during the day, 5 x per day...(not leaving room for anything else, really) and then, after 2 months, with a night machine.
In August my mum sent out a huge email that went around the world to all kinds of contacts. There was an article in a little local paper in an area of the UK where I grew up: East Anglia. A stranger contacted me: we were the same (rare) blood type, type O-. He came to the Netherlands and had all the tests and we were told a month ago...we're a match!
Now the transplant is going to happen on Wednesday. The donor flies from the UK today..I'm actually excited!
They wait until you're at about 10% kidney function for this. So I imagine all these years of having compromised function.
There are 2 types of dialysis: hemodialysis and peritoneal dialysis. One is done at the hospital, the other at home. I chose to do home dialysis. It enables you to have somewhat more freedom; you are in charge of your own care to a large extent. The drawback was having a catheter placed in my abdomen, travelling down through my organs to sit down at a low point inside me to enable a daily system of removing the toxins from my body and inserting new, clean fluid to do its work.
So since July, I've done home dialysis, first during the day, 5 x per day...(not leaving room for anything else, really) and then, after 2 months, with a night machine.
In August my mum sent out a huge email that went around the world to all kinds of contacts. There was an article in a little local paper in an area of the UK where I grew up: East Anglia. A stranger contacted me: we were the same (rare) blood type, type O-. He came to the Netherlands and had all the tests and we were told a month ago...we're a match!
Now the transplant is going to happen on Wednesday. The donor flies from the UK today..I'm actually excited!
Sunday, December 14, 2008
A bit of history
To begin - I was diagnosed with having one kidney when I was 13, in 1978. The doctors at the time didn't really alert my parents to any potential problems down the line and said that it was doing the work of 2 kidneys. That seems strange in retrospect - why was the biopsy wanted in the first place, then? Luckily, my mother wouldn't allow them to do a biopsy, so I had a scan instead.
When I was in my 20s, my creatinine (a protein that measures the kidney function) level was found to be elevated and they diagnosed me with chronic kidney disease. Though there were multiple attempts to find out the reason for this, no cause was ever defined.
My disease progressed very slowly.
From the time I found out about my disease, I took great care of my diet (mostly vegetarian with a lot of good flavour, organic unless i could really not find or afford it, lots of veg and grains, low salt, low sugar, not much alcohol) and health from that point on. I am not sure that this is the reason that the disease took a full 20+ years to become end-stage renal failure, but I like to believe it to be so.
I am glad I left the U.S. when I did, in 2006. Did I sense that end-stage was near? My levels had been so stable - I hovered around 35% function for a very long time. I had really convinced myself that I would be 70 years old by the time that happened. But I was 43. Last year in April, my kidney function took a dive suddenly - it went from 25% to about 12%. It coincided with a very stressful time - my boyfriend and I had bought a small house in January and it had turned into a nightmare, with us living in the 2 rooms the whole time it was being rebuilt.
When I look back at last year, it all seems a blur. I realise now that I was on auto-pilot for a lot of it. Finding a donor just seemed natural to me. I didn't think about it, I just went full speed ahead. Now I find that I can't believe it. My head is spinning a bit from it!
When I was in my 20s, my creatinine (a protein that measures the kidney function) level was found to be elevated and they diagnosed me with chronic kidney disease. Though there were multiple attempts to find out the reason for this, no cause was ever defined.
My disease progressed very slowly.
From the time I found out about my disease, I took great care of my diet (mostly vegetarian with a lot of good flavour, organic unless i could really not find or afford it, lots of veg and grains, low salt, low sugar, not much alcohol) and health from that point on. I am not sure that this is the reason that the disease took a full 20+ years to become end-stage renal failure, but I like to believe it to be so.
I am glad I left the U.S. when I did, in 2006. Did I sense that end-stage was near? My levels had been so stable - I hovered around 35% function for a very long time. I had really convinced myself that I would be 70 years old by the time that happened. But I was 43. Last year in April, my kidney function took a dive suddenly - it went from 25% to about 12%. It coincided with a very stressful time - my boyfriend and I had bought a small house in January and it had turned into a nightmare, with us living in the 2 rooms the whole time it was being rebuilt.
When I look back at last year, it all seems a blur. I realise now that I was on auto-pilot for a lot of it. Finding a donor just seemed natural to me. I didn't think about it, I just went full speed ahead. Now I find that I can't believe it. My head is spinning a bit from it!
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