Since Dad has his transplant my 12WBT has totally gone out the window. Since Saturday 18/6 (transplant day), I have had at least 1 bought meal every single day. Some days it's been twice per day. I've had pizza, chicken & chips, fasta pasta, chinese, pub meals, cafe-bought foccacias, even bacon & eggs for breakfast after the all-nighter at the hospital the night we got the phonecall. I haven't even had a chance to look at the last 2 weeks worth of nutrition plans for 12WBT.
Couple with this ridiculously bad diet is the fact that I've spent the last 2 weeks sitting on my butt. I've been either sitting at my desk studying for my exam & writing my final assignment for the semester or I've been sitting in my car or I've been sitting at Flinders Medical Centre. The only times I've been even slightly active is the days that I've worked.
Needless to say, in the last 3 weeks I've gained 1.5kg. I feel as though I've gained a lot more in cms though. I suppose it's not too bad really, considering all the crappy fried, carbohydrate rich foods I've eaten. The only problem is that it probably won't get any better until at least this time next week because we're going away for a little family holiday to Mt Gambier next week.
Argh, why does life always have to get in the way of me following through with my weight-loss plans?
Thursday, June 30, 2011
Monday, June 27, 2011
9 days post-op
So it's been 9 days since Dad had his transplant & as far as everyone can tell, it's been a complete success. He has good days & bad days but on the whole, he's feeling a million bucks compared to how he felt 10 days ago. His colour's now completely normal - he's been extremely jaundiced for so long now, it's almost strange to see his skin a normal colour! As of this morning, he's completely free of any drips, drainage tubes, catheters etc so all he's got left to show for his efforts is a massive great big scar that from one side of his abdomen to the other like this: 
The Drs have told Mum & Dad that they're all surprised that he survived long enough for the transplant & because he was so sick for so long, his recovery will take longer than most. They've told us to expect it to take at least 6 months & possibly up to 12 months before he feels 100% all of the time. They said his liver was all blackened & shriveled up & they were surprised it was capable of functioning on any level at all.
Dad's aiming to discharge home on Friday. He has to prove to the medical & nursing staff that he's capable of managing his medication regime independently before they'll allow him to go home. At the moment, he's still not quite there mainly because he struggles to keep track of time. They've put a big clock in his room where he can see it, so hopefully that'll help him to manage a bit better.
We're so grateful our family had the opportunity to receive this life-saving gift.
The Drs have told Mum & Dad that they're all surprised that he survived long enough for the transplant & because he was so sick for so long, his recovery will take longer than most. They've told us to expect it to take at least 6 months & possibly up to 12 months before he feels 100% all of the time. They said his liver was all blackened & shriveled up & they were surprised it was capable of functioning on any level at all.
Dad's aiming to discharge home on Friday. He has to prove to the medical & nursing staff that he's capable of managing his medication regime independently before they'll allow him to go home. At the moment, he's still not quite there mainly because he struggles to keep track of time. They've put a big clock in his room where he can see it, so hopefully that'll help him to manage a bit better.
We're so grateful our family had the opportunity to receive this life-saving gift.
Tuesday, June 21, 2011
What a difference a day makes!
I couldn't get to the hospital to see Dad today but Joe popped in this morning about 5 minutes after he'd been extubated. Joe said Mum met him at the ICU door with the biggest grin he'd seen on her face in months! Dad was apparently sitting up in bed & gave Joe a high 5 when we saw him. He said he feels better than he's felt in 6 months! He's not in any pain & the lovely fluro yellow colour of the jaundice is fading. The Drs are now confident that the troubles Dad had in the 1st couple of days were simply due to the small liver adjusting to its' new workload. Ultrasound shows it's increased in size by 10% already since Saturday.
Joe said there were tears all round as Dad was telling him & Mum about how he was certain he was going to die. He said he's so relieved (as we all are!) that this transplant came in just the nick of time. He told Joe he loves all of the family so much & can't wait to actually play a part in our lives again.
Now I really wish I had have been able to get to the hospital today! I won't be able to get there until Thursday morning so hopefully by then he'll be back in the ward & well on his way to recovery :)
Joe said there were tears all round as Dad was telling him & Mum about how he was certain he was going to die. He said he's so relieved (as we all are!) that this transplant came in just the nick of time. He told Joe he loves all of the family so much & can't wait to actually play a part in our lives again.
Now I really wish I had have been able to get to the hospital today! I won't be able to get there until Thursday morning so hopefully by then he'll be back in the ward & well on his way to recovery :)
Monday, June 20, 2011
Feeling anxious
Dad's recovery from the transplant has been complicated by the fact that the new liver is not functioning as well as it should. The doctors are fairly sure it's just to do with the fact that it was a smallish liver (apparently it came from a 55kg man) that's gone into a big body & is trying to adapt. There is a chance though that it's not functioning properly because Dad's body is rejecting it.
They've increased the anti-rejection medication & added a new medication (not sure what exactly!) to try to rectify the situation. In the meantime, they've left Dad intubated to give his body the best chance of recovery & also as a safe-guard in case they need to return to theatre. The last thing they want to do is extubate him & then have to re-intubate him to take him back to theatre.
If things don't improve, they're going to do a biopsy in the next day or so which we think is to determine whether or not his body is rejecting the new organ or not. We need to get some clarification on this tomorrow because we're not 100% sure.
Best case scenario...the new liver is just adapting to having to work in a larger body in which case it should start to work more efficiently by tomorrow or Wednesday at the latest.
Worst case scenario...Dad's body is rejecting the donor liver. If this is the case, he will remain intubated & go on the national priority list for the 1st available liver & then have to have another transplant. God, I hope it doesn't come down to this!
The doctors told us this morning that they're fairly confident it's the first scenario but then when Mum rang tonight the nurse told her that they'd increased the anti-rejection medication so maybe they're not so sure any more? Argh...it's so stressful!
On a positive note, when we were there today, Dad's sedation was light enough that he could open his eyes & ever so slightly nod or shake his head in response to questions. I was standing right next to him when he first opened his eyes & when I noticed & leaned over to say hello to him, he held his hand up to hold my hand. Such a great moment that made Mum & I both cry!
Looks like we've still got a long & potentially bumpy road ahead yet.
They've increased the anti-rejection medication & added a new medication (not sure what exactly!) to try to rectify the situation. In the meantime, they've left Dad intubated to give his body the best chance of recovery & also as a safe-guard in case they need to return to theatre. The last thing they want to do is extubate him & then have to re-intubate him to take him back to theatre.
If things don't improve, they're going to do a biopsy in the next day or so which we think is to determine whether or not his body is rejecting the new organ or not. We need to get some clarification on this tomorrow because we're not 100% sure.
Best case scenario...the new liver is just adapting to having to work in a larger body in which case it should start to work more efficiently by tomorrow or Wednesday at the latest.
Worst case scenario...Dad's body is rejecting the donor liver. If this is the case, he will remain intubated & go on the national priority list for the 1st available liver & then have to have another transplant. God, I hope it doesn't come down to this!
The doctors told us this morning that they're fairly confident it's the first scenario but then when Mum rang tonight the nurse told her that they'd increased the anti-rejection medication so maybe they're not so sure any more? Argh...it's so stressful!
On a positive note, when we were there today, Dad's sedation was light enough that he could open his eyes & ever so slightly nod or shake his head in response to questions. I was standing right next to him when he first opened his eyes & when I noticed & leaned over to say hello to him, he held his hand up to hold my hand. Such a great moment that made Mum & I both cry!
Looks like we've still got a long & potentially bumpy road ahead yet.
Sunday, June 19, 2011
24 hours later...
I just got home from visiting Dad in hospital. He's still intubated & they're worried that he's still "oozing blood". Since he's been in ICU he's had 6 units of whole blood, 4 of plasma and 2 of platelets & it has slowed but not stopped the bleeding. If they can't get it under control soon, they'll have to take him back to theatre to open him up again & see what's going on & if there's anything they can do to fix it.
Other than that, he's doing as well as can be expected. I think when we first got there today, he was able to hear us as he had some facial movement when we were talking to him & he flinched when the nurse did mouth & eye cares for him. But the nurse increased his sedation shortly after that because she was worried he was a bit "too awake". He still looks as though he's resting comfortably.
Hopefully that bleeding stops soon & he can get the breathing tube out tomorrow.
Other than that, he's doing as well as can be expected. I think when we first got there today, he was able to hear us as he had some facial movement when we were talking to him & he flinched when the nurse did mouth & eye cares for him. But the nurse increased his sedation shortly after that because she was worried he was a bit "too awake". He still looks as though he's resting comfortably.
Hopefully that bleeding stops soon & he can get the breathing tube out tomorrow.
Saturday, June 18, 2011
Finally!
It's been 6 weeks since Dad was originally called up for the liver transplant that didn't end up going ahead due to the donor liver being too fatty. 6 long weeks of being told he was top of the list & it would be "any day now". In that 6 weeks, he's had 3 stays in ICU & we were told twice that he wouldn't make it through the night. But he did.
And last night at 15 minutes past midnight we finally got the call we've been waiting for. There was another liver available! Dad was already in Lyell McEwin because he'd had a bad fall on Thursday morning so we were told they'd get an ambulance transfer from Lyell McEwin to Flinders for him & that we could meet him there.
When we arrived at Flinders (at approximately 2am) they told us he'd only just left Lyell McEwin so they took us up to his room on the ward to wait for him there. He were surprised when he arrived at around 2:30 & the paramedics told us they came lights and sirens because they didn't want to risk him being too late for the procedure. It took them just 27 minutes to travel the 31kms. Dad had a big grin on his face when he saw us. I couldn't tell you the last time I saw Dad smile like that! It was lovely.
The nursing staff & transplant coordinator went about their business getting everything ready for the surgery. We were told it was scheduled to commence at 8am. At 4:50 we got the news we were waiting for. The Dr had seen the donor liver & was happy to proceed with the transplant. This time it's really happening!!
They called for Dad at around 6:45 & we went with him down to the theatre holding bay. When we got down there, we met the wonderful Annie who is the theatre nurse that does all the liver transplants. She told us that Dad's transplant was the 201st liver transplant she had been involved with. She said that for today, Dad was her husband & her father & that all the staff in theatre would treat him as though he was one of their own family members for that day. Of course we were all sobbing by this stage & she gave us each a big hug. Then she pulled the curtain around Dad's bed to give us some privacy to say our goodbyes.
We all said good bye to Dad & wished him well. We were all crying. Even Dad. Although we were all trying to be positive, each of us were well aware that this could be the last time we're all together. It was very hard to walk out & leave him there. He's a strong, independent man but it was obvious he was terrified. We were terrified too. Tears are flowing down my face now as I think back to this morning. It was one of the hardest things I've ever had to face.
After we left the hospital, Mum, Tanya & I stopped at a cafe for breakfast. We must have been such a sight, sitting there crying as we were talking about what had happened that morning & what was still ahead of us over the next few days, weeks, months.
As promised, the liver transplant coordinator rang us at around 12:30 to tell us that they had removed Dad's liver & things were progressing well at that stage. Then at 4:45 we finally got the call to say that the operation was a success and that Dad was stable & on his way to the intensive care unit. What a relief! He'd made it.
We went back into the hospital tonight to see him. He was fully sedated & intubated so he would not have been aware that we were there but it gave us peace of mind to see him. He looked relaxed & comfortable, despite all the tubes & machines around him. Hopefully by the time we get to the hospital tomorrow, he will be extubated and maybe awake enough to be aware that we are there for him.
We know he's not out of the woods just yet. He still has a long road ahead of him but at least we are heading in the right direction now.
To quote my beautiful mum..."hoo-bloody-ray!!!"
And last night at 15 minutes past midnight we finally got the call we've been waiting for. There was another liver available! Dad was already in Lyell McEwin because he'd had a bad fall on Thursday morning so we were told they'd get an ambulance transfer from Lyell McEwin to Flinders for him & that we could meet him there.
When we arrived at Flinders (at approximately 2am) they told us he'd only just left Lyell McEwin so they took us up to his room on the ward to wait for him there. He were surprised when he arrived at around 2:30 & the paramedics told us they came lights and sirens because they didn't want to risk him being too late for the procedure. It took them just 27 minutes to travel the 31kms. Dad had a big grin on his face when he saw us. I couldn't tell you the last time I saw Dad smile like that! It was lovely.
The nursing staff & transplant coordinator went about their business getting everything ready for the surgery. We were told it was scheduled to commence at 8am. At 4:50 we got the news we were waiting for. The Dr had seen the donor liver & was happy to proceed with the transplant. This time it's really happening!!
They called for Dad at around 6:45 & we went with him down to the theatre holding bay. When we got down there, we met the wonderful Annie who is the theatre nurse that does all the liver transplants. She told us that Dad's transplant was the 201st liver transplant she had been involved with. She said that for today, Dad was her husband & her father & that all the staff in theatre would treat him as though he was one of their own family members for that day. Of course we were all sobbing by this stage & she gave us each a big hug. Then she pulled the curtain around Dad's bed to give us some privacy to say our goodbyes.
We all said good bye to Dad & wished him well. We were all crying. Even Dad. Although we were all trying to be positive, each of us were well aware that this could be the last time we're all together. It was very hard to walk out & leave him there. He's a strong, independent man but it was obvious he was terrified. We were terrified too. Tears are flowing down my face now as I think back to this morning. It was one of the hardest things I've ever had to face.
After we left the hospital, Mum, Tanya & I stopped at a cafe for breakfast. We must have been such a sight, sitting there crying as we were talking about what had happened that morning & what was still ahead of us over the next few days, weeks, months.
As promised, the liver transplant coordinator rang us at around 12:30 to tell us that they had removed Dad's liver & things were progressing well at that stage. Then at 4:45 we finally got the call to say that the operation was a success and that Dad was stable & on his way to the intensive care unit. What a relief! He'd made it.
We went back into the hospital tonight to see him. He was fully sedated & intubated so he would not have been aware that we were there but it gave us peace of mind to see him. He looked relaxed & comfortable, despite all the tubes & machines around him. Hopefully by the time we get to the hospital tomorrow, he will be extubated and maybe awake enough to be aware that we are there for him.
We know he's not out of the woods just yet. He still has a long road ahead of him but at least we are heading in the right direction now.
To quote my beautiful mum..."hoo-bloody-ray!!!"
Thursday, June 9, 2011
He's had enough :(
I'm on placement at the moment but got sent home at around 1pm yesterday so I thought I'd take advantage of the unexpected free time & go to visit my Dad. Because the hospital he's in is so far from home, I usually don't get a chance to see him during the week because I'm just too busy with the girls, uni etc.
Mum had warned me that he wasn't well & that she feels he has given up. When I got to his bedside, I nearly didn't recognise him. Since I last saw him on Sunday, he's developed a huge amount of fluid on his abdomen (a common condition with end-stage liver disease). He looks like he's full term pregnant with about 4 babies! He's in an exceptional amount of pain & they're giving him Endone regularly to deal with that which then just knocks him out to sleep. I had to wake him to speak to him & I'd only been there about 5 minutes when he looked me in the eye & said "Melissa, I've had enough. I can't do this anymore". And then the tears just rolled down his cheeks. It's the 2nd time in a few weeks that I've had to wipe tears from my Dad's face.
I feel really bad about what I said to him. I told him he has to try to keep fighting because we never know when a transplant might become a reality. I feel terrible about it now because I'd hate for him to be feeling that he's giving up if he really can't fight anymore. I feel as though I should have told him that we know he's fought as hard as can & that we'd understand if he can't hold on anymore. I did tell him not to be a hero & to ask for pain relief when he needs it. I hope he at least takes that suggestion on board.
My Mum asked the Dr straight out yesterday "how long can he go on like this for if he doesn't get a transplant" & the Dr said he could "keep chugging along like this for a while". Whatever that means.
Mum had warned me that he wasn't well & that she feels he has given up. When I got to his bedside, I nearly didn't recognise him. Since I last saw him on Sunday, he's developed a huge amount of fluid on his abdomen (a common condition with end-stage liver disease). He looks like he's full term pregnant with about 4 babies! He's in an exceptional amount of pain & they're giving him Endone regularly to deal with that which then just knocks him out to sleep. I had to wake him to speak to him & I'd only been there about 5 minutes when he looked me in the eye & said "Melissa, I've had enough. I can't do this anymore". And then the tears just rolled down his cheeks. It's the 2nd time in a few weeks that I've had to wipe tears from my Dad's face.
I feel really bad about what I said to him. I told him he has to try to keep fighting because we never know when a transplant might become a reality. I feel terrible about it now because I'd hate for him to be feeling that he's giving up if he really can't fight anymore. I feel as though I should have told him that we know he's fought as hard as can & that we'd understand if he can't hold on anymore. I did tell him not to be a hero & to ask for pain relief when he needs it. I hope he at least takes that suggestion on board.
My Mum asked the Dr straight out yesterday "how long can he go on like this for if he doesn't get a transplant" & the Dr said he could "keep chugging along like this for a while". Whatever that means.
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