Finally...a follow up after all these years!

It has been years..5 years!..since I last posted on this blog. I wanted to do a new and completely unrelated, natural beauty blog, so stumbled upon this one, saw that some people are still reading these posts, even this week, and felt that I should write an update.

So..updates of my life.

I feel so amazing. Wonderful. Healthy. Happy. Alive!

Yes, I have a kidney transplant, am an insulin-dependent diabetic, have a COPD (bronchieactasis - diagnosed last year), a hernia from my surgery, sciatica and nerve entrapment problems in my arms. But all of these things are totally surmountable when I look outside and see the colors of the trees and flowers. I hear the blackbird singing in the trees and I feel connected to life. I see my darling 15 year-old cat blissed out in the sun and I couldn't be happier.

My kidney function is very stable. I have tests done every 3 months. I take anti-rejection medication every 12 hours and will continue to do so for the rest of my life, (unless there is some miracle of modern science, which is not entirely out of the question). This has all become extremely routine.

I was never comfortable with my first name so I started going by my middle name about 4 years ago. Gary and I were married almost 3 years ago..we just celebrated 8 years of being together. I'm still in regular touch with my charismatic and wonderfully amusing kidney donor, Tim. That's something that makes me incredibly happy.

I eat a mostly vegan, 95% organic, plant-based diet now. It's so much easier for my diabetes control. I have green juices (kale, celery, cucumber and lemon being my all-time favorite!), cereal from chia seeds and fruit and homemade almond milk. I drink banana, maca and green tea smoothies instead of coffee. I make vegan raw mayonnaise from cashews and I use my dehydrator to make veggie burgers from fresh vegetables and seeds. This weekend I  made a raw strawberry cheesecake from strawberries that we picked ourselves at a local organic farm on Saturday, the Summer Solstice. I am not a purist and on weekends am tempted by my husband's bags of crisps/potato chips, snippets of tasty Dutch 'belegen' cheese and the very occasional coffee...OH how I love that coffee!! :) I enjoy being balanced.

I go twice a week to work out (the cardio works wonders for the COPD) at a local physiotherapy fitness center. I also do a lot of activity outdoors and at home. This includes lots of sit-ups to try to rebuild my muscle tone in my lower abdominal wall..and get rid of that ridiculously persistent Prednisone belly!! (At least I don't get those erroneous and embarrassing pregnancy congratulations anymore). 

For my nerve entrapment problems I luckily found some great videos by these generous people at Kinetic Health:

Nerve flossing 

These videos make are clear and just make sense - they have helped me by 80%.

The diabetes is the biggest challenge..I really can't believe this disease and how it must affect so many people. I feel very sad for the elderly diabetics who live alone and need help with it. And the children who have to grow up with it. Taking care of it is like gambling. It's so much guess work and requires incredible discipline. I've had a couple of scary low blood sugar episodes. I haven't had many high blood sugar problems, mostly due to my diet. My diabetes is a rare form (MODY 5, diagnosed 3 years ago by a genetic test. And guess what..? MODY 5 is a type of genetic diabetes that also affects the kidneys! So I finally have an answer as to why I was born with one kidney and why my kidney failed). MODY patients are generally thin (check) and their blood glucose is only affected by food intake (oh yes, so true).

All in all, maintaining a lifestyle that is meaningful to me is the key to my happiness. I am very lucky to be able to follow these paths that I see before me. I am so grateful to my husband for his support and humor. And to my lovely pussycat, Present, (aka Prezzie), for helping me be present for all these years. The laughs I get from seeing her pounce after a string on the bed every night..well, that's joy concentrate to me.

Thanks for reading.

I wish you all health, joy and love.

Louise

Acute Rejection vs. Chronic Rejection

It's a tough one today. I am just back from the transplant hospital. I went in for a regular visit, but with complaints of swelling around my eyes and knees, with a weight gain of 3 kilos within the last week, (that's 6.6 pounds). I also had some pain around the site of the new kidney over the weekend, and it's been on and off this week. I called about it on Monday and was told that I should call back only if I developed a fever or the pain increased, neither of which occurred.

Today, during my visit, this week's doctor explained that the number 2 cause of these symptoms is acute rejection, not to be confused with chronic rejection. The doctor did not explain the difference, so I was extremely alarmed with the news. This was until he asked me if this was my first experience with acute rejection. I wondered at his question, thinking 'How can it happen more than once? A rejection is surely has ultimate consequences'. So I persisted with my questioning. Now I'm slightly less worried, but still, I have been sad and crying after reading all I could on line:

Acute rejection happens to almost all patients who receive organ transplants. The patient's immune system and white blood cells recognize the transplanted organ as being foreign and mount a defense against the organ. The new organ is then incapable of working at full efficiency, and symptoms of rejection become apparent to the transplant recipient. These symptoms of rejection are very similar to the symptoms of organ failure.

Acute rejection is almost always reversible with special medication. Once successfully reversed, some patients never have trouble with acute rejection again, although some patients do have subsequent episodes. Most rejection episodes require admission to the hospital. Acute rejection is rare beyond the first year of transplant.

Signs and Symptoms of Kidney Rejection
Fever over 38°C or 100.4°F
Decreased urine output
Weight gain over 2 pounds per day
Increased blood pressure
Pain over kidney

I do have 3 out of 5 symptoms: the latter 3. I've asked them about 2 of these symptoms for the last month (as I've struggled with fluctuating weight and high blood pressure since the transplant) and they've largely put me off. This is due to the fact that my creatinine levels (the protein that is filtered by the kidneys and the most reliable test for kidney function) have remained extremely stable. But I also put it down to the fact that this hospital just does not have the staff nor the time to give me (or any other patient) more than his or her alotted ten minute visit every two weeks. It is really frustrating and depressing.

I have joined sites like Transplant Buddies and looked up as much info as I can on line. But the lack of human care is hard to handle. I really have nothing else to say until I hear the results later on this afternoon.

7:07pm: the results were good. I was told that my creatinine is 'beautiful', at 84 (0.95 U.S. level). Phew. What a load of concern. It is so scary.

In two weeks time, I will have a curve blood test done to see how the levels of drugs are in my system, to see if they can be lowered. Since they are toxic for the kidneys, this is crucial for long-term kidney health.

2 months and 3 days after the transplant

I really have my ups and downs during this recovery period. Most of the time, I write when I'm feeling pretty good, so I don't end up expressing my fears and sadnesses on this blog. Is it because it's a public blog? Am I trying to put on a brave face? Perhaps.

There is so much left to chance in kidney disease. Not even time will tell when the kidneys will finally fail, when a kidney will become available, if a body will reject my the kidney. People ask me 'How long will the kidney last?' I tell them that there is absolutely no way to know. It could be for the rest of my life. It could be for another month. The unknown can be scary.

I realised after I had my transplant that many, many years had been dictated by fear. Fear of the pending dialysis. The unknown of dialysis. Fear and lack of knowledge about a potential transplant. About 9 years ago, in California, I had a GP I didn't much care for. He was more into predicting than helping me understand, and once barked at me 'You are going to snowball into end stage renal failure in 5 years!' The word 'snowball' haunted me for those years. What did it mean, exactly, this 'snowballing into renal failure'?

Since I couldn't get medical insurance easily in the States, as I had a 'pre-existing condition' and insurance was prohibitively expensive unless I had worked for a corporation that was prepared to pay for it, (I didn't), I ended up having to go to several different county facilities, both in San Francisco and Los Angeles. I had many, many different doctors. The bad thing about this was that I received no consistant care. Perhaps that is why I am so keen on seeing the same doctor each time in my current hospital.

But I was talking of fear. Fear was there before the dialysis, before the transplant and, I'm sorry to say, fear is there still. Now the fear has another place: though I don't think of my body rejecting my new kidney, of course I know that I am scared, somewhere in my mind, whether it is in the background or forefront. Some of the fear can be assuaged when I have information. I was scared that I have to urinate so little during the day and so much at night - until I asked and was told that this is normal for transplant patients. And now I'm scared every time I feel any pain around my new kidney area. Is it the scar healing inside? Is it the new kidney? 'Someone tell me what's going on!', I want to shout. But no one can really tell me what's going on. That's for my body and my new kidney to work out.

Disease and surgery can create a new lease on life - and I know that it has for me. In many ways, I am stronger and more confident and more 'me' than I've ever been before. I am not afraid to speak my mind, nor to be direct and fearless with others. And acceptance is surely one way to deal with fear of illness.

A social worker (ready for the Dutch word? Maatschaapelijkwerker) here in the Netherlands was filling in for my regular Maatschaapelijkwerker. She gave me something to think about when I said that I was scared that my body would reject my new kidney. She said 'If that happens, you'll figure out a way to deal with that when that time comes'. And, as I remind myself of that, I realise that that is what we do. We deal with things as they come. And no amount of planning or worrying or fear ever really helps, as all we have is the present. And I do believe that that frame of mind is the best way, the only way.

But I have to tell you, it is certainly is easier said than done sometimes.

Day 58: Instructed to take drugs, yet asking questions

I went in to the hospital today. I haven't been for 2 weeks, which is nice for my schedule, but I really was glad to go in and have a lot of my current questions answered.

I used to have a blood pressure machine at home, but it belonged to the dialysis ward, and it's gone back to its rightful home. So I was really suprised when my blood pressure was taken and it was 150/100, sky high for me - I have always been a steady 128/76 kind of person. This, too, is from the drugs. At some point I really have to wonder - if this wasn't a case of life or death, this transplant, would all of these drugs and their side-effects be worth it? I know that some of these side effects are temporary, but what long-term effect do they have on the body? But the reality is I know full well that these drugs are keeping my body from rejecting my new kidney and am ultimately SUPER grateful for them!

The current side effects of the most aggressive of the drugs I'm on include:

Elevated blood sugar, making insulin a necessity (Prednisone, Neoral)
High blood pressure (Neoral)
Headaches - can be severe (Neoral)
Night sweats of a duration of 3-5 hours (Prednisone or Neoral)
Day sweating - is it all of the drugs struggling to get out?
Distorted vision (Not sure which drug)
Swelling around eyes (fluid retention) (Neoral or Metformine)
Swollen face (Prednisone). I don't really mind this side effect, as it pads out my face quite nicely!
Oily, oily skin and hair (Prednisone). Another hidden plus effect - at 43, it's kind of exciting to see oil on my skin.

I'm having an ultrasound done a week from today to see why my abdomen is so distended. I truly cannot wear jeans or anything I used to. I have been wearing leggings and sweat pants (I now reserve sweats for house only!) for the last two months! I had heard before my surgery that PD patients' abdomens can still produce fluid as they are so used to dialysing, but that mine would probably not due to the short time that I was on dialysis. If it's somehow the case, how on earth will they get the fluid out now that the catheter is gone? I really don't want to think about it!

All these crazy questions with so little answers. Hence the blog - it really helps to get everything down in print. Poor Gary is over-inundated. I have so many thoughts and theories. Being an inquisitive type makes my mind overly busy. A typical example of my train of thought is this: I have been given a calcium supplement that contains E numbers (additives) and artificial sweeteners, including Aspartame. This is stuff that I usually avoid. When I read about Aspartame on the internet, almost every site had some info about it being controversial as far as health safety and even linked to causing blood sugar level problems. I find this stuff fascinating! So of course I brought it up with my doctor.. he told me that if I have 4 units of dairy (4 glasses of milk or cups of yoghurt), I can stop the tablets. I wonder if they think I'm a bit crazy with some of my questions, but then I'm quite sure they've heard it all.

8 weeks today: A new kind of kidney belt!

Have I mentioned that my new kidney is located in the front of my body, down between my right hip and pubic bones? It's fairly unprotected, especially since I have virtually no body fat. My nephrologist (nefroloog in Dutch) told me that a bike accident that caused the handle bars to go into this area could cause the loss of my beautifully working new kidney. I thought this interesting but perhaps somewhat unlikely. I Googled all sorts of phrases to see if I could find anything regarding this issue, but came up with absolutely nothing. I put it out of my mind..that was until a friend told us of a woman he knows who indeed lost her transplanted kidney in a bicycle accident. I have now been thinking of how I can protect myself while riding, as having a bike (and therefore not relying on a car and all of its entrapments) is one of the best things of living in The Netherlands.

Day 47 - Not so much to report

The odd thing about blogging, in my mind, is that I never know if anyone is reading the blogs. Is it just my particular info, going into the ether? So when I received an email from a friend telling me that I must update it at least every 3 days or he would become concerned, I thought to myself, 'Maybe people assume that post-op life is one of relaxed bliss, propped up on pillows while blogging away'. I can assure you that it isn't like that. See yesterday's post for more info.

The person who instructed me to write in the blog more often has now suggested that if I write something controversial, I may have commenters so that I know people are reading the blog. But stirring controversy isn't what I'm after with this blog. Controversy is for fame seekers and the media is all about creating controversy. I'm tired of the whole thing. That's why I now live in The Netherlands and not Los Angeles. But I digress.

As far as the hospital visits go, last week I was told that I now only have to go for check ups once every 2 weeks, so it will be a real break for me not to have to go this week, as it's a distance to travel and a bit of a production having blood drawn and urine tests done.

It has been a much needed break for me not to write anything about disease or post-op care with such regularity. For life as a more healthy person has a way of swallowing up the time:

I am currently busy with work (2 full days last week), reading (George Eliot's 'The Mill on the Floss' - controversial in 1860!), shopping for food to make wintery dinners. We have a friend here building some much-needed shelves for Gary's (overly, in my humble opinion) extensive record collection. As he has been here in our woonkamer (Dutch for living room) for 3 days straight, that leaves the tiny bathroom, the small kitchen and the bedroom in which to retreat. It's been trying to snow; it's bitterly cold and windy (-7 celcius, 19.4 farenheit). The canals are frozen. It's not much fun to be outdoors because of the wind. So I've been trying to cheer up by looking up sourdough-starter and bread recipes; that will be a project for this week. It's just too hard to relax with someone working in the house. And that's it for another tame session of my blog!

Day 46 - Insomnia - drugs or stress?

I have been having bouts of insomnia and worry at 5 or 6 am until the time that we wake at 7:50am. I have read that many of the drugs I'm on can cause it, but I'm sorry to report that insomnia is nothing new to me; I have had bouts of insomnia for years, but during the time I was on dialysis, I was also on a drug to control kidney-failure-caused muscle spasms. Clonazepam, this lovely drug, made me sleep like a baby for the first time in years. And though I have two full bottles of this stuff, I've been weaning myself off it for the last 6 weeks. It is advised to go off it really slowly, incrimentally. I am down to an eighth of what I used to take. I had hoped that the transplant would help the insomnia, but I'm quite sure now that it's all down to stress factors.

Stress: the last 3-4 years have been so incredibly stressful. Last year was the ultimate in stress: we bought a very small - 50 square meter (164 foot) house that ultimately needed to be rebuilt while we were living in it. My kidney failed and I underwent dialysis surgery and care and then transplantation. We worried a lot about finances. And that is still the case.

(We need a holiday. Gary hasn't been for 6 years; I've not been since I came here for a week in 2004. Prior to that, my last real holiday was Morocco, 1992).

I have so much concern about the unknown factors which come with transplantation. Why is my abdomen still so swollen that I look pregnant? I am told that it's because I'm thin, but it still bothers me because I like to know all of the information. And why is it so difficult to urinate sometimes? I was finally told that one, and how helpful it would have been had I known in the beginning that transplanted kidneys have no regulation of output volume. So instead of urinating regular amounts at regular intervals, a transplanted kidney produces irregular amounts at irregular and delayed intervals. And, as I had noticed, I was told that patients experience that most of the urinary output is..at night, when I want to be sleeping.

One thing that is really, really difficult is that there was no real communication that post-surgery would be so time consuming and busy. I had envisioned a rest period with reading, yoga and lots of time to myself. Though I have been doing a bit of this, there has been a lot of time filled with travel to and from the hospital, self-monitoring, worrying about finances due to not working much, dealing with administration for reimbursement for donor costs, attempting reimbursement from my insurance company for things they've left unpaid for 6 months, scheduling work, trying to locate an affordable school for Dutch lessons (for my lack of the language has me at such a disadvantage).

Day 42 - 6 weeks today

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.

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.

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.

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.

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.

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. :)

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

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!

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!

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

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.

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.

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