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
Tuesday, December 30, 2008
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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