Thursday, May 31, 2007
Trying to stay positive, but...
...it is very hard.
We had our 'date' to the hospital yesterday. Had hoped to get there early enough to visit the cafe before the appointment, but there was no parking, so we had to park a few blocks away and walk back. Such a slow process for John at the moment, even golden oldies on walking frames overtake us.
We got up to 3A, the renal consulting rooms, just in time for John to catch his breath before we went in. Along with the shortness of breath, acid reflux, muscle weakness, twitches, acne, sore eyes and needing sleeping pills, John has developed tingling in his fingers on the left hand. When he mentioned that to the doctor I couldn't help myself and said - great, add a heart attack to the mix, don't we have enough going on, is our life too boring?
The doctor laughed and said he could see why John brought me along, John said "Comic Relief".
Turns out the tingling is yet another side effect from the drugs.
The doctor did say we have had a particularly rough ride, that they only show the happy stuff on TV and having a transplant is like having a baby, all the anxiety and worry that goes along with that but you don't have a new baby to show off at the end.
Because there are no real answers just more appointments we didn't end up at the cafe after the appointment either, but headed home in the rain.
Now I'm left wondering if this is as good as it gets for John, he had 2 weeks of being his old self back in December, 3 months after the transplant, and then it all started back downhill.
It is hard to keep looking on the bright side, think positive and all of those quirky, happy little expressions. Family and friends all think the transplant fixed everything and can't understand that our lives are just stressful, there hasn't been a happy ending for us yet.
Today I have to hold it together and meet with this school teacher without reaching over the desk and smacking him silly. The letter he wrote us would have anyone thinking Simon is the worst kid in school. I really do not need this today or any day actually.
I will pull myself up by the boot straps and plan the menu for Bradley's 20th birthday on Monday. I have some cooking to do over the weekend, but will buy his cake this year as he wants a caramel mud cake and that is just too much to tackle.
John and I did find a new song we both love - Micheal Buble "Everything".
We had our 'date' to the hospital yesterday. Had hoped to get there early enough to visit the cafe before the appointment, but there was no parking, so we had to park a few blocks away and walk back. Such a slow process for John at the moment, even golden oldies on walking frames overtake us.
We got up to 3A, the renal consulting rooms, just in time for John to catch his breath before we went in. Along with the shortness of breath, acid reflux, muscle weakness, twitches, acne, sore eyes and needing sleeping pills, John has developed tingling in his fingers on the left hand. When he mentioned that to the doctor I couldn't help myself and said - great, add a heart attack to the mix, don't we have enough going on, is our life too boring?
The doctor laughed and said he could see why John brought me along, John said "Comic Relief".
Turns out the tingling is yet another side effect from the drugs.
The doctor did say we have had a particularly rough ride, that they only show the happy stuff on TV and having a transplant is like having a baby, all the anxiety and worry that goes along with that but you don't have a new baby to show off at the end.
Because there are no real answers just more appointments we didn't end up at the cafe after the appointment either, but headed home in the rain.
Now I'm left wondering if this is as good as it gets for John, he had 2 weeks of being his old self back in December, 3 months after the transplant, and then it all started back downhill.
It is hard to keep looking on the bright side, think positive and all of those quirky, happy little expressions. Family and friends all think the transplant fixed everything and can't understand that our lives are just stressful, there hasn't been a happy ending for us yet.
Today I have to hold it together and meet with this school teacher without reaching over the desk and smacking him silly. The letter he wrote us would have anyone thinking Simon is the worst kid in school. I really do not need this today or any day actually.
I will pull myself up by the boot straps and plan the menu for Bradley's 20th birthday on Monday. I have some cooking to do over the weekend, but will buy his cake this year as he wants a caramel mud cake and that is just too much to tackle.
John and I did find a new song we both love - Micheal Buble "Everything".
Tuesday, May 29, 2007
Another Day...Another Stitch (or more)
A wet and cold day in South Australia, so after the school run I plan to stitch. I will have to interrupt my stitching time for the harsh realities of life - washing and cooking. Still can't convince everyone to stop eating and become nudists so I can stitch more.
John is off for a blood test this morning while I do the school run and we'll meet back at home. Tomorrow we have another 'date' to the hospital. There is actually a lovely little cafe there so we do get to breathe and enjoy our alone time LOL.
Here i
s the latest progress on Fish City and Nature's Home A
fghan Square #4
s the latest progress on Fish City and Nature's Home A
fghan Square #4Monday, May 28, 2007
More stress = More Stitching
I'm alternating between Fish City and Nature's Home Afghan with quick finishes in between.
Here is the latest. Oh so appropriate.
Wednesday, May 23, 2007
I'm on a roll
Another little finish. This was from the online magazine Gift of Stitching. The popcorn buttons make it an expensive little stitch, but I like it :)
On the home front, today I have to deliver a letter to Simon's home group and English teacher as he is making the poor boy's life at school miserable. So we'll see what the outcome is when I can meet with him.
John is going to the hospital after work this morning, so he'll be late getting home. More blood work and an appointment with his specialist. He isn't looking or feeling well, so it will be interesting to see what is going on. He had a meeting after work yesterday morning and the manager asked him how much time he needed off work, that he could take as much time as he needs - the only trouble there is he has absolutely no leave left after taking time off for the transplant, so he would be on leave without pay. We can do it if he would do it, but he is stubborn and wants to work. Things would definitely be tight financially but we could get through a few weeks I'm sure.
I will be doing the same old, same old today. Drop the boys at school, come home and make lasagne for dinner and then washing and ironing. Ah...the joys.
On the stitchy front I have put Fish City aside today and will finish the 4th square of Nature's Home Afghan.
Monday, May 21, 2007
Monday Morning - cold and wet in SA
A cold and wet morning here.
John has just gone off to the hospital and there are supposedly 2 teenage boys getting ready for school, not much action yet.
Sunday we had a lazy day at home. Or as lazy as it can be for me, still laundry, cooking and dishes to do. If they would all stop eating and wearing clothes my life would be empty LOL.
Saturday was an interesting trip to the hospital. The renal ward was full to bursting so the nurses were very busy. They found us chairs in the treatment room and hooked John up to the drip. A little over an hour later the drip was removed, but the nurse doing it wasn't happy and forgot to flush the jelco in his arm before she pulled it out, so he bled all over the chair and floor. The nurse was even less happy, John wasn't too impressed either. We ran into John's specialist doing rounds as we were leaving the ward so he stopped for a chat.
We have both reached the point where we just need a break, but that is not going to happen for a while. John will find out today when he has to go back to the hospital again, it will be at least once a week for the near future.
I am debating about buying a cross stitch kit from the UK. It is from the Born to Shop collection, and says "I am woman, I am invincible, I am Tired." Very appropriate at the moment.
After the school run today I will attempt to make the living room liveable and then hope to get some serious stitching done on Fish City so I can get back to Nature's Home Afghan tomorrow.
John has just gone off to the hospital and there are supposedly 2 teenage boys getting ready for school, not much action yet.
Sunday we had a lazy day at home. Or as lazy as it can be for me, still laundry, cooking and dishes to do. If they would all stop eating and wearing clothes my life would be empty LOL.
Saturday was an interesting trip to the hospital. The renal ward was full to bursting so the nurses were very busy. They found us chairs in the treatment room and hooked John up to the drip. A little over an hour later the drip was removed, but the nurse doing it wasn't happy and forgot to flush the jelco in his arm before she pulled it out, so he bled all over the chair and floor. The nurse was even less happy, John wasn't too impressed either. We ran into John's specialist doing rounds as we were leaving the ward so he stopped for a chat.
We have both reached the point where we just need a break, but that is not going to happen for a while. John will find out today when he has to go back to the hospital again, it will be at least once a week for the near future.
I am debating about buying a cross stitch kit from the UK. It is from the Born to Shop collection, and says "I am woman, I am invincible, I am Tired." Very appropriate at the moment.
After the school run today I will attempt to make the living room liveable and then hope to get some serious stitching done on Fish City so I can get back to Nature's Home Afghan tomorrow.
Saturday, May 19, 2007
My Latest Finishes
I am back working on Fish City, but needed some quick finishes this past week, so this is what I stitched.
Note the theme - chocolate and stitching it has been a stressful week!!
Friday, May 18, 2007
Stitching keeps me sane
Back from the morning at the hospital, and we'll be back there again at 9am tomorrow. John will make a return visit on Monday morning for more blood tests and to see his specialist. One day at a time.
Stitching is definitely my sanity saver, I finished a couple more things this week but will have to upload photos later when Blogger co-operates
Stitching is definitely my sanity saver, I finished a couple more things this week but will have to upload photos later when Blogger co-operates
Off to hospital we go
I'm not feeling so stressed this morning, though I have been awake since 3.30am.
After a 12 hour day John got home last night and having spoken to his specialist and started treatment he is feeling happier.
There are a couple of types of rejection, acute and chronic. The 'good' one to get is acute, and that is what John had. Probably because it is such a fine line getting the balance of drugs right. There needs to be enough drug to prevent rejection without too many side effects.
John has had the 3 main anti-rejection drugs. Cyclosporin was the first he was put on and it didn't work for him. Tacrolimus was the next and the main side effect for him was tremors - looked like he had Parkinson's. About a month ago he was switched to Sirolimus and initially got severe mouth and tongue ulcers, so the dose was reduced. Unfortunately it seems reducing the dose resulted in this episode of rejection.
So given the choice between increasing the dose of Sirolimus and suffering painful mouth ulcers - we are talking entire mouth and tongue - or going back to Tacrolimus and tremors, John chose the tremors. Today he'll start back on Tacrolimus.
We are heading off to the hospital after we drop the boys at school to see his specialist and then John can have his 2nd IV treatment. Saturday we'll have another 'date' to the hospital.
One great piece of news, the researchers have isolated the gene for polycystic kidney disease and a drug developed to halt the growth of the cysts and therefore stop the destruction of the kidneys will be available in about 5 years. If Shane was a few years older he could take part in the drug trial, but he isn't 18 yet. But all going well the drug will be available to him in the near future and he won't need a transplant later in life. Our other 3 boys will have ultrasounds again late this year to check their kidneys. John had no sign of the disease until he was 29, but Shane had multiple cysts at 8 years of age. No telling if or when it could show up in the others, so they have to have regular checks.
So a bit of relief today. but the ride continues.
After a 12 hour day John got home last night and having spoken to his specialist and started treatment he is feeling happier.
There are a couple of types of rejection, acute and chronic. The 'good' one to get is acute, and that is what John had. Probably because it is such a fine line getting the balance of drugs right. There needs to be enough drug to prevent rejection without too many side effects.
John has had the 3 main anti-rejection drugs. Cyclosporin was the first he was put on and it didn't work for him. Tacrolimus was the next and the main side effect for him was tremors - looked like he had Parkinson's. About a month ago he was switched to Sirolimus and initially got severe mouth and tongue ulcers, so the dose was reduced. Unfortunately it seems reducing the dose resulted in this episode of rejection.
So given the choice between increasing the dose of Sirolimus and suffering painful mouth ulcers - we are talking entire mouth and tongue - or going back to Tacrolimus and tremors, John chose the tremors. Today he'll start back on Tacrolimus.
We are heading off to the hospital after we drop the boys at school to see his specialist and then John can have his 2nd IV treatment. Saturday we'll have another 'date' to the hospital.
One great piece of news, the researchers have isolated the gene for polycystic kidney disease and a drug developed to halt the growth of the cysts and therefore stop the destruction of the kidneys will be available in about 5 years. If Shane was a few years older he could take part in the drug trial, but he isn't 18 yet. But all going well the drug will be available to him in the near future and he won't need a transplant later in life. Our other 3 boys will have ultrasounds again late this year to check their kidneys. John had no sign of the disease until he was 29, but Shane had multiple cysts at 8 years of age. No telling if or when it could show up in the others, so they have to have regular checks.
So a bit of relief today. but the ride continues.
Thursday, May 17, 2007
More rejection!!
Just what we didn't want to hear.
John had his biopsy today, the 6th in 7 months and just rang a little while ago to say he was going up to the renal ward for a drip. He hasn't spoken to his specialist yet, but there is some level of rejection - he'll know more when he sees his specialist again today. He'll spend the next hour hooked up to the drip and then have to go back in tomorrow and Saturday for 2 more treatments.
This is the 3rd time he has had the drips and he'll need another biopsy next week to see if things improve.
I just feel ill. This isn't the way things were supposed to work out.
John had his biopsy today, the 6th in 7 months and just rang a little while ago to say he was going up to the renal ward for a drip. He hasn't spoken to his specialist yet, but there is some level of rejection - he'll know more when he sees his specialist again today. He'll spend the next hour hooked up to the drip and then have to go back in tomorrow and Saturday for 2 more treatments.
This is the 3rd time he has had the drips and he'll need another biopsy next week to see if things improve.
I just feel ill. This isn't the way things were supposed to work out.
Monday, May 14, 2007
A Memorable Mothers' Day
Mothers' Day started out as planned.
Breakfast with John, flowers, a new pig ornament and a couple of nice cards, a quiet morning of stitching.
When John woke up in the afternoon we had a late lunch and then drove over to visit his mum. The boys stayed home.
John and I arrived home just before 5pm, opened the door to find a nice clean house...and Simon grabbing his chest in obvious agony. Dropped my bag to find out what was going on and, bad parents that we are, we both started laughing when he told us....."I had a guitar pick in my teeth and I swallowed it."
Since things swallowed do pass and he was breathing ok we had him try to drink water which proved very painful. Milk he couldn't quite swallow, so off we went to the hospital.
John dropped Simon and I off at the nearest ER and we waited. As the pain increased and Simon got more distressed we finally got taken back to see the ER doctor. Observation initially, then an x-ray and a big dose of morphine as he was in agony. Talk of sending him on to the children's hospital for an endoscopy, but luckily that idea was changed to further observation. It seems the increased pain was because the pick was passing from the esophagus to the stomach, sharp and triangular it wasn't an easy thing.
Meanwhile John had reheated the yummy dinner I had prepared earlier - meatloaf and scalloped potatoes and fed the boys. Rang work to tell them he wouldn't be in and waited at home for news.
I finally got to ring him just before 9pm and he came back to the hospital to wait.
The best part of the evening was when the nursing staff did change over of shift and the nurse looking after Simon said "This is Simon Walter, 16 years old and he is here because he swallowed a guitar pick." The 3 new nurses all erupted into spontaneous laughter.
We finally got home at 11.30pm, had a cup of tea and went to bed.
Definitely a memorable Mothers' Day!!
Breakfast with John, flowers, a new pig ornament and a couple of nice cards, a quiet morning of stitching.
When John woke up in the afternoon we had a late lunch and then drove over to visit his mum. The boys stayed home.
John and I arrived home just before 5pm, opened the door to find a nice clean house...and Simon grabbing his chest in obvious agony. Dropped my bag to find out what was going on and, bad parents that we are, we both started laughing when he told us....."I had a guitar pick in my teeth and I swallowed it."
Since things swallowed do pass and he was breathing ok we had him try to drink water which proved very painful. Milk he couldn't quite swallow, so off we went to the hospital.
John dropped Simon and I off at the nearest ER and we waited. As the pain increased and Simon got more distressed we finally got taken back to see the ER doctor. Observation initially, then an x-ray and a big dose of morphine as he was in agony. Talk of sending him on to the children's hospital for an endoscopy, but luckily that idea was changed to further observation. It seems the increased pain was because the pick was passing from the esophagus to the stomach, sharp and triangular it wasn't an easy thing.
Meanwhile John had reheated the yummy dinner I had prepared earlier - meatloaf and scalloped potatoes and fed the boys. Rang work to tell them he wouldn't be in and waited at home for news.
I finally got to ring him just before 9pm and he came back to the hospital to wait.
The best part of the evening was when the nursing staff did change over of shift and the nurse looking after Simon said "This is Simon Walter, 16 years old and he is here because he swallowed a guitar pick." The 3 new nurses all erupted into spontaneous laughter.
We finally got home at 11.30pm, had a cup of tea and went to bed.
Definitely a memorable Mothers' Day!!
Saturday, May 12, 2007
I did warn you....
...that I am easily distracted.
This is what I stitched yesterday and early this morning. Still doing my 4am wake up!!
I figure this piece really fits in my life right about now.
Friday, May 11, 2007
Decisions, decisions
Well I am faced with a dilemma today, what to stitch? I am really loving the Nature's Home Afghan - the 3rd square is pictured and I started the 4th which is a pretty blue bird.
So....do I finish the 4th square or should I be good and work on Fish City some more? Decisions, decisions.
I have lots of stitching time, because in times of stress I don't sleep. Or rather I sleep about 4 out of every 24 hours.
This morning I was very good though and cleaned our bedroom at 4.15am. Had 2 loads of washing done by 6.15am and once I drive the boys to school the day is mine, apart from general housework and having to feed the tribe.
I think I will be good and work on Fish City some more. Maybe for each page of Fish City I complete I can then do 3 squares of Nature's Home. Of course I am easily distracted so I am sure a few other projects will sneak in too.
Wednesday, May 09, 2007
On the roller coaster...again!!
Off we went to the hospital to see John's specialist yesterday. We were the last appointment of the day, 5pm and on the way John said he probably wouldn't have to come back for a couple of months. Yeah right.
The specialist had the results from the blood test John had on Monday morning and things are not good. There has been an increase in creatinine levels and that is back to 188, supposed to be 120. Itchy legs and tiredness for John are not good signs either.
So, back to the hospital on Tuesday, more blood work and depending on the results quite possibly another biopsy to check the state of the kidney and for any signs of rejection. So we are back on the roller coaster. John's meds have been adjusted again to see if that helps, so more tablets and more worry.
This is definitely a ride that is not fun.
Stitching remains my sanity saver, as does eating unfortunately.
Here are a few of my recent finishes and ongoing projects. I have finished the 3rd square of the afghan now, just need to get a picture of the finished square, the photo here shows how it looked last week. I forgot there was a memory card in the camera LOL and thought I had lost my photos.
Sunday, May 06, 2007
Not as organised as I thought
I really thought I had taken photos of my latest stitching, but I can't find them. Looks like I will have to take some more today.
I did have one photo on the camera - a cute pig (well I think so anyway) designed by Margaret Sherry. He needs ironing and finishing off - probably into a little pillow, along with the companion pig.
I've definitely had plenty of stitching time. Too wet and cold outside to do anything and my mouth has been so sore. Shouldn't complain as I have completed 3 squares of the Nature's Home Afghan - I'll take photos later today and upload them. I've stitched the 2 pigs and I've sorted out some little projects to stitch up and get out of storage.
John has decided he needs a new work space and we went looking at sheds. He has picked out the one he wants, and once he gets his tax return he will have it delivered and he and the boys can put it up. In the meantime he has work ahead to move my garden beds and the little garden shed and get the area ready. That will be fun in winter NOT.
Originally he had a work space as there is a fully lined room - which was a double car garage that had been converted. When the boys were little and shared bedrooms this spare outside room became John's work room. Now it has become 2 bedrooms - one side for Shane and one side for Bradley, poor John has nowhere to go.
Of course I have a stitching project planned for his new shed LOL, a Tool Sampler. Must work out how big a piece of fabric I'll need.
Should get my day started. I have promised Simon we'll go for a drive today, but I might delay it until evening as he needs more night hours, we can get an hour in tonight.
Apart from that it is the same old, same old. Housework and stitching.
