Home again

Yesterday at about 3pm I was discharged from the Austin Hospital. It is lovely to be home again. To sit in our surprisingly tidy bedroom and play a board game with the whole family. To have a tasty cup of tea and biscotti and to indulge in a long night's sleep. I still have some pain, but it is reducing as time goes on.

Today I went in to St Vincent's for my first follow up. These will be daily for a while. It turned out to be a long one. At 9.30 am I had my checks and blood tests as expected, but then they decided to change dressings and do an ultra sound and several nuclear scans that were timed and hour apart. Plus the hospital was very busy with a skeleton staff, so everything took time. I got out at 3.30pm.

The extended family had planned an afternoon tea which I only just made it too. But it was lovely to get there and catch up and the last minute and now I feel like I've been to one party this Christmas/ New Year season.

Thanks to all who have left gifts and food. Stuart has not kept a record of what is from whom so I apologize if I haven't thanked you personally. I'm afraid anyone who has left containers had better speak up so I can get them back to you.

We will be watching the fireworks from our balcony tonight and bringing it a very happy 2010.

Coming home

Stuart here:
I just heard from Jane, she's coming home this afternoon.

Contact details

Stuart here: Jane asked me to post her contact details...

Austin Hospital patient calls line: 9496 5500
Ask for: Jane Thomson

Sunday update - good news

Jane just had a talk with the doctors, who reviewed with her the latest test results.

They're very pleased.

She's showing zero protein in her urine, for the first time in 8 years, and all the other test results are very good. It looks like the new kidney is doing very well.

Friday update

Jane continues to look healthier and happier each day, we're hoping she'll be home soon, but the doctors are keeping their cards close to their chests for now.

Here's a picture taken on Xmas morning...

Wednesday update

Jane was looking much better today, after her first decent nights sleep in a long time.

Tuesday update

Stuart here.

The doctors operated on Jane again last night, and this time they're pretty convinced they've fixed the bleed. Jane was looking much better when I saw her today, sitting up in a chair and trying to convince me to smuggle her in an icy-pole.

Lois was also looking very well today, and is now resting happily at home.

Sunday update

Stuart here.

Things haven't gone quite as well for Jane as we'd hoped.

She's got some post operative bleeding, which prompted the doctors to operate on Friday night. They thought they'd fixed it, but it's come back, so she was having all sorts of tests today to try to identify the problem.

The doctors are confident they can fix this, but Jane hasn't had the easy, restful weekend we'd hoped for.

Meanwhile - the good news is that Lois was very bright and chirpy today, and looks likely to be going home soon.

Good News

Stuart here.
The operation went well, Jane and Lois are both doing fine.

Last Day of Freedom

It is my last day before going into the Austin Hospital and I'm almost certain to be having the transplant. The cold I am suffering from, it has been decided, is not bad enough to postpone the operation. The team at the Austin will have the last say on that tomorrow morning after I am admitted. I am feeling relieved that a decision has been made. I hadn't realized how stressed I was, not knowing.

I have had a good day today with more energy than usual. Went to a financial meeting this morning and had a haircut this afternoon, so I am ready. But on the down side I am still suffering from coughing fits and consequently having trouble sleeping.

Visiting the Austin

I will be admitted to the Austin Hosptial Wednesday 16th at 8am. I will be Jane Thomson as a patient there. I will be able to have visitors that day, but most of the day I will be on dialysis or having a plasma-exchange infusion. I am not sure of the location, other than it is the 7th floor. I will not have any visitors on Thursday, the day of the operation. Only Stuart is allowed on Friday, Sat and Sun. Other visitors may come from Monday 21st until I am discharged, probably on the 24th December.

Please ring Stuart to arrange a day and time to visit. I am only allowed 2 people at a time and only for 10-15mins. I will need rest periods. It is a good idea to ring before you set out even if you have a time allocated in case I am unable to have visitors.

No flowers or fruit baskets are allowed due to infection control. Please do not come if you are unwell. Children will probably be asked to stay outside the ward.

I will have a phone, check with Stuart about good times to call, and for the number.

Monday 14th Dec

Today was the last day of procedures as an out patient. It all went very smoothly with no problems such as cramping, thank goodness. We are concerned about the viral cough I still have. It would be very unpleasant to be coughing after abdominal surgery. We are trying ventalin in the hope it may control the coughing fits. No one will make the call to postpone the transplant. They are waiting to the last minute, hoping I get over this cold. Meanwhile they took a chest x ray and I am collecting urin for 24 hours to be tested. We'll see what they say about it all tomorrow.

Improvement

Things went better on friday with less cramping and for a shorter time. This time however my blood pressure went rather low so i had to hang around until it was high enough for the nurses to let me go. I have also got over the worst of the cold, I hope. Thanks to Glenys for the lift home on Friday and to Melissa for Monday and Mum for Wednesday. Mum and I got excellent results for the last cross matching test. So it looks like it is full steam ahead.

Wednesday 9th Decmber

The whole infusions, dialysis and plasma-replacement went much more smoothly today. We started just after 8am and concluded after 5pm, so it was another long day. They have prevented the problems with calcium leaching so no pins and needles this time and the cramping, which started out bad, was treated with magnesium and hasn't bothered me since. Also I seem to have crossed over the worst of the cold, and there is still a week before the transplant, so I might recover in time.

Plasma- exchange and Dialysis

To say the dialysis and plasma- exchange has gone smoothly would not be the truth. There have been a number of surprises and minor complications. It is a know possible side effect of kidney failure to get cramps. I suffer from this mostly in the leg, foot and hands. It is also known that dialysis can aggravate cramping and so it has been with me. They don't seem to know what to do to prevent this. They have offered pain killers to ease the symptoms.

In some cases, including mine, Plasma-exchange can leech the calcium out of the blood leaving you with pins and needles in the hands and lips. From now on I will be given a calcium supplement before the procedure.

My iron levels are low so I will also have iron added to the mixture to help make me less anemic and prepare for the transplant.

Let's hope all of that will make the days on the 10th floor more comfortable.

Permacath Inserted

After spending the night in St Vincent's Private Hospital I am glad to be home. The medical procedures all went very well, but took a long time. I didn't arrive in my room until 7 pm last night. The line isn't attractive, but it's only in for a month. and the main thing it is working well.

After the doctors evaluation this morning I now know I will be going for dialysis each time I go in for plasma exchange. They will be long days. A special thank you to Geoff who came to my rescue at short notice by going to our home and collecting essential overnight stay items and delivering them to me. Also thanks to Glenys who was on standby to take me home but wasn't needed in the end. Thanks also to all of you who have offered support of various kinds. For example I returned home to find a selection of books left by Linda, wonderful. I just finished 'the white tiger' and was wondering what I would read during Monday's session. Thanks also to Neal and Tim who helped Vicky get to and from Guides.

Get it off my chest

It is the day before the permacath insertion, first plasma-exchange and dialysis and I have not received any letter about these procedures. All I know is to turn up at St Vincent's private at 8 am. I assume at day procedures. I don't know what to do to prepare other than stop the clexane that morning. Should I fast?, or take my usual tablets? for example. I don't know who is doing the surgery or what type of anesthetic to expect.

In addition I don't have the admission information for the Austin yet. Mum has got hers. Nor do I have the bloods slip for the cross matching next Thursday from the Red Cross. I had concerns that know one was project managing me, now my fears are coming to pass.

dialysis

Unfortunately it seems my kidneys aren't quite going to make it to the 17th december without some assistance. Therefore I will have at least one two hour session of dialysis after the line is put in on Friday 4th december. This will happen on the same day as the first plasma-exchange. I am advised that I won't feel any different after the plasma- exchange.

Lead up timeline

Things are warming up with the preparation for the transplant. I now have some details and dates that apply.

Dec 4th admitted to St Vincents' private for permacath insertion. Followed by first Plasma-exchange later in the day. From this point on I will be immune compromised once again. If you plan to visit please do not do so if you have a cold. If I encounter you in the street and you are ill please let me know. I will be carrying a mask and can put it on.

Dec 7th, 9th, 11th,14th More plasma-exchange. It takes about half a day, I do not have times yet and I don't know if I will feel better or worse after the procedure yet.

9th december also final tissue typing for Mum and I.

16th December admit to Austin Hospital, also Mum .

17th Transplant surgery confirmed.

19th dec resume plasma-exchange in the Austin.

24th December anticipated discharge

To follow daily review at St Vincent's with plasma- exchange 3 times/week.

Plan to continue p-exchange for 2 weeks, then review.

Coordinators

Some wonderful people have taken on the jobs of coordinating the various areas in which we have asked for help;

1) Meals coordiator is Dieni. Dieni prefers to be contacted by phone 0425 743 219

2) Child minding coordinator is Vanessa. Vanessa prefers to be contacted by phone 0400 893 358

3) Transport coordinator is Glenys. Glenys prefers to be contacted by text message 0400 443 639 We will need to use this more than we planned due to Stuart breaking his wrist and being unable to drive for an indeterminate period. When Glenys is on holiday Alison has kindly offered to step in as transport coordinator. Alison can be contacted by phone on her mobile 0404 065 912 or at home 9326 3043.

4) Visit coordinator is Stuart. Stuart prefers to be contacted by phone 0418 418 423

Time Line

A brief time line

(This has been put here for some people who have requested it and did not receive via email earlier)

early december, jane will have a number of infussions as day procedures to prepare for transplant. This is to try to get the levels of FSGS as low as possible with the intent that it will not attack the transplant. FSGS is my kidney disease. It is thought to be an auto immune disease. The chances of it coming back in the transplant are roughly 50/50.

A week before the transplant jane will be put back onto immume supressing medication. This in known to effect mood, that is i am likely to become quite emotional. I will also start to swell up again with fluid, in time will get hairer etc. I will remain on this medication for ever. The dose will reduce over time.

Wed 16th december jane admitted to Austin Hospital in Heidelberg, ward 7 north, to be put on a drip. This is to get my blood to the correct thickness to have an operation. I have been on blood thinning medication ever since the stroke two years ago.

Wednesday 16th december Mum is admitted to the Austin also. we are both prepared for the operation the following day.

Thursday 17th december The kidney is taken out of Mum in the morning, 2-3 hour operation. Then put into jane in the early afternoon about 4hour operation. we are returned to the same floor, in seperate rooms. The recipients usually in a single room and the donors in another room.

Jane is in isolation for 3 days due to high levels of immune supression. This is to reduce the chances of complications through infection.

Monday 21st December Mum may be discharged. She will not be allowed to lift or drive for 4-6 weeks.

Jane can have visitors if all is going well. Please do not visit if you have a sniffle or if someone in your family is ill. No flowers will be allowed in the hospital. (Please save them for when I come home). Visits are restricted to no more than 10-15 minutes and a maximum two people at a time. You will be able to ring stuart to arrange a good time to visit.

Thursday 24th december Jane may be discharged.

For the following 6 weeks

jane must visit St Vincent's Hospital, Fitzroy every day for blood tests and outpaitient consultation, yes that does include Christmas day and the other public holidays. I am not allowed to drive or lift.

For the 6 weeks following, that is week 7-12. jane may be allowed to start driving and lifting. I will still have to go for blood tests and outpatient consultations three times a week for 4 weeks, and then twice a week for another 4 weeks.

During the first 3 months after a transplant most recipients have a period of rejection that is controlled quickly (98%).

For the first 12 months I am advised not to travel. That is I should be within 15 mins. of medical help at all times.

Help Needed

The main areas we would like your help with are;
1) Meals for the family while I am indisposed, ie from mid december until about mid January.
2) Child minding and entertainment, bearing in mind that it will be school holidays for most of the time.
3) Occasional transport to and from Hospital, North Melb to Fitzroy and back.
4) Visits to keep me from going around the bend. Please call first.

Thanks in advance and please don't feel obliged to do anything. It's only if you would like to.
Jane.

My wonderful husband Stuart has set up this blog for me. ( He wrote that)