so i was noticing all this time, that I think I;ve grown post surgery. everyone seems shorter. is that possible? has anyone had this happen to them. i am going to get them to measure me today. all the nurses seem shorter, my doctors, even standing next to my mom, people seem shorter...i bet i have grown an inch and a half...lets take bets. i;ll get them to measure me today and we;ll see. its probably all in my head, but still.
also this rejection business kind of deflated my sails yesterday a bit, but ive gotten a lot of emails and so many people have expierenced it the first little bit post transplant. they just figuered out my rejection meds in the last three days the levels so no wonder. but my doctor said during my bronch that my lungs look beautiful, she actually used those words, and that there are no secretions or anything that she would expect to see after only three weeks. so woo! doing good that way, just have to get this rejection under control. the pain from the chest tubes is insurmountable, so i am taking heavy duty meds for that. today it is not so bad, and i feel as if one of the imaginary 2 by 4s sitting on my chest has now lifted...now i only have 9 heavy pieces of wood crushing my chest down...haha hopefully every day those will improve.
i also tried to walk up the stairs yesterday with teh physio...oh boy that did not go so hot. i could not even do it! sooo weak in the thighs, i was able to do 10 minutes on the stationary bike though...just have to build up those thigh muscles...they are pathetic! one day at a time. one day at a time!
Also HUGE about the fashion show www.cfforcf.com. You girls are doing an amazing job, i am shocked all the time. It is sooo soon! How exciting. Thanks for sending me photos of the car wash, it looked like unbelievable fun, cant wait till next year when im up doing it too! You girls are awesome and it has kept me going seeing everything that you all are doing!
Enjoy the long weekend! caribanna? fuuuuunnn! cottaging funnnn! the first time i was walking yesterday i thought, oh the cottage is sooo in reach! i am walking faster with my walker, and strengthening my thighs so i;ll be able to walk up stairs eventually! they say i may even get out of here next week!
Saturday, July 31, 2010
Friday, July 30, 2010
a free woman
#1 Thank you to lindsay. a huge, big, giant, enourmous thank you for keepîng everyone updated and doing such a wooonderful job. Linds is a journalist and writes so beautifully!
#2 PETER! you commented on here. tell me everything about the beach. is the ice cream store still kickin? hows the water? is it sandy, rocky?
As for me this week, has been sooo busy. I now have ALL tubes gone. I am a free woman. Chest tubes are outta here! catheter is outta here and central line is outta here, all thats left is a little peripheral hand IV. I graduated from the high walker to a low walker when walking about, and am using the bathroom, going for walks on my own, getting stronger every day!
I also had my first bronchoschopy this week. it went fine. not bad at all. I got some of the results back and I have a bit of rejection...sigh. they say this is really common though, and so for the nxt three days I am put on a really high dose of steriods. They said I probably have rejction because it took awhile to get the levels right with all my anti rejection drugs. Basically rejection means my body is trying to destory these new forgien lungs, so they have to suppress my immune system. I asked them numerous times, is this common, is this common, and yes it is....so hopefully its just because they were playing around wtih all the rejection pill levels, and these steriods will do the trick. Still feeling good though so thats what is important.
#2 PETER! you commented on here. tell me everything about the beach. is the ice cream store still kickin? hows the water? is it sandy, rocky?
As for me this week, has been sooo busy. I now have ALL tubes gone. I am a free woman. Chest tubes are outta here! catheter is outta here and central line is outta here, all thats left is a little peripheral hand IV. I graduated from the high walker to a low walker when walking about, and am using the bathroom, going for walks on my own, getting stronger every day!
I also had my first bronchoschopy this week. it went fine. not bad at all. I got some of the results back and I have a bit of rejection...sigh. they say this is really common though, and so for the nxt three days I am put on a really high dose of steriods. They said I probably have rejction because it took awhile to get the levels right with all my anti rejection drugs. Basically rejection means my body is trying to destory these new forgien lungs, so they have to suppress my immune system. I asked them numerous times, is this common, is this common, and yes it is....so hopefully its just because they were playing around wtih all the rejection pill levels, and these steriods will do the trick. Still feeling good though so thats what is important.
Monday, July 26, 2010
My lips are pink....
I looked in the mirror for the first time in three weeks. My lips are pink, my eye lids are light. Im no longer oxygen deprived. I no longer look sick. Its amazing. Today three weeks ago I got the call for new lungs. The nurse came in to my room back at st. mikes at one in the morning, Karen and said to me Hattie they just called they have your lungs for you, they have lungs for you honey...I woke up groggigly and said to her...noooo...no they dont. Yes yes they do. I then began to cry. I immediatly called my mama and papa and then lindsay. I have lungs! They have lungs for me! After 5 and half weeks on the list and almost 1 week on the rapidly deteriorating list, my lungs had come, now pray that it was not a false alarm . I remember this, but it seems so so so far away now. Everyone over here asks me how long I was waiting for and when I tell them 6 weeks, they say not long at all...and when I think about it, six weeks is not long...but when your living it...6 weeks was hell...especially that last week when I could not breathe, and things kept deteriorating. Anyways so that is the story of what I remember from getting my call.
Today three weeks ago I got the call.
Today I am alive.
Today I am listening to barbados playlist from two years ago, bobbing along looking out the window with the sun shining with tears in my eyes.....Im breathing....no oxygen, pink lips, light eye lids...Im alive...sigh.
Thank you donor, whoever you are, thank you, thank you, thank you....I will do you proud.
Today three weeks ago I got the call.
Today I am alive.
Today I am listening to barbados playlist from two years ago, bobbing along looking out the window with the sun shining with tears in my eyes.....Im breathing....no oxygen, pink lips, light eye lids...Im alive...sigh.
Thank you donor, whoever you are, thank you, thank you, thank you....I will do you proud.
First Blog from Hattie!
Hey everyone,
Again sorry for the gap in updates. Life has become busy, but thankfully I have someone to help me out now... and that someone is Hattie! Here is an update from the source:
So I'm sitting here typing on my blackberry taking deep breaths with my new lungs!
Before I give an update I just want to say thank you, thank you, thank you to all my army of supporters! You guys have kept me going through this whole thing! Even though I did not reply, I got and read every single email! Thank you times a million you have no idea how much the littlest or biggest note meant.
The first time I checked my phone post tx I have 251 emails! That is one of the only things I do remember the first two weeks, as they were pretty brutal. No one prepares you. Every ones journey is soooo different and my first two weeks I am trying to forget and doing a good a job of it! It was a scary time, but I have these puppies breathing and workin for me now! Again I am pushing myself like crazy and you guys are helping me sooo much again thank you!
As for an update, I'm now on the ward! Woo! Last step before home! It means I'm stable enough not to be monitored all the time. I'm up to three walks a day! Thanks to mom, brother and papa who have learned how to wiggle and figgle all my chest tubes and other what have yous! I'm still really weak, and nauseous a lot of the time, but three walks now woo! And stopping two IV's tomorrow. My chest tubes are still in...the x ray says they can come out but they are still draining lots, meaning still fluid on the lungs, hopefully this week they will stop draining as they are a bit cumbersome.
This is the hardest thing I've ever had to go through....but I'm so thankful things seem to be moving in the right direction! Thanks soo much for all the support it seriously has kept me going! It's weird on this side of the tracks because now it's my legs and my weakness slowing me down instead of my lungs. I still have not taken a big big deep breath because of the chest tubes and it's kind of weird to feel the staples but at least the feeling has come back in my chest.
Here's to my donor, my donor family....who's lungs are working beautifully.....here's to a good week, being on the ward and my mom and dad who come in every single day.....aren't they the best? Thanks to B for letting my mom stay in Toronto! Here's to nice weather, no winter coats or boots! Here's to dreaming about running on the beach at the cottage (I still don't quite believe that that is going to be possible....) also I have my voice back! It is way higher than before....no more CF voice?? Maybe it will change again once the chest tubes come out but for now it sounds sooo different to me! Hope everyone had a good weekend! I'm glad my vision has come back a little so that I can type this out! I'm suppose to be napping before the folks get back for my third walk so hope your Sunday evening is dandy getting home from the cottage! Oh the cottage I want to go to mine so badly.....sigh I hope strength comes back soon! Hello again world!
Again sorry for the gap in updates. Life has become busy, but thankfully I have someone to help me out now... and that someone is Hattie! Here is an update from the source:
So I'm sitting here typing on my blackberry taking deep breaths with my new lungs!
Before I give an update I just want to say thank you, thank you, thank you to all my army of supporters! You guys have kept me going through this whole thing! Even though I did not reply, I got and read every single email! Thank you times a million you have no idea how much the littlest or biggest note meant.
The first time I checked my phone post tx I have 251 emails! That is one of the only things I do remember the first two weeks, as they were pretty brutal. No one prepares you. Every ones journey is soooo different and my first two weeks I am trying to forget and doing a good a job of it! It was a scary time, but I have these puppies breathing and workin for me now! Again I am pushing myself like crazy and you guys are helping me sooo much again thank you!
As for an update, I'm now on the ward! Woo! Last step before home! It means I'm stable enough not to be monitored all the time. I'm up to three walks a day! Thanks to mom, brother and papa who have learned how to wiggle and figgle all my chest tubes and other what have yous! I'm still really weak, and nauseous a lot of the time, but three walks now woo! And stopping two IV's tomorrow. My chest tubes are still in...the x ray says they can come out but they are still draining lots, meaning still fluid on the lungs, hopefully this week they will stop draining as they are a bit cumbersome.
This is the hardest thing I've ever had to go through....but I'm so thankful things seem to be moving in the right direction! Thanks soo much for all the support it seriously has kept me going! It's weird on this side of the tracks because now it's my legs and my weakness slowing me down instead of my lungs. I still have not taken a big big deep breath because of the chest tubes and it's kind of weird to feel the staples but at least the feeling has come back in my chest.
Here's to my donor, my donor family....who's lungs are working beautifully.....here's to a good week, being on the ward and my mom and dad who come in every single day.....aren't they the best? Thanks to B for letting my mom stay in Toronto! Here's to nice weather, no winter coats or boots! Here's to dreaming about running on the beach at the cottage (I still don't quite believe that that is going to be possible....) also I have my voice back! It is way higher than before....no more CF voice?? Maybe it will change again once the chest tubes come out but for now it sounds sooo different to me! Hope everyone had a good weekend! I'm glad my vision has come back a little so that I can type this out! I'm suppose to be napping before the folks get back for my third walk so hope your Sunday evening is dandy getting home from the cottage! Oh the cottage I want to go to mine so badly.....sigh I hope strength comes back soon! Hello again world!
Thursday, July 22, 2010
Back In Action
Yesterday Hattie was able to eat and drink once she was moved down to the step-down unit--finally out of the ICU. Her chest was feeling a little uncomfortable (it felt heavy), so she required 1 L of oxygen. There is also still fluid on her lungs.
The physiotherapist and nurse from the CF clinic visited Hattie the other day (Tuesday), which perked her right up. Even more so, her younger brother made the six hour drive to come see her yesterday (he hasn't been able to see her since before her transplant).
In her words she is "breathing deep, making these lungs work it, moving it around and trying to drain the extra fluid". She walked about 100 m yesterday, twice, and her strength has already improved (not as wobbly!). No doubt all that working out and staying strong before transplant helped loads.
So far, today her vision is a bit blurry still and she in only allowed 1 L of liquid, but things seem to be holding steady.
- Lindsay
The physiotherapist and nurse from the CF clinic visited Hattie the other day (Tuesday), which perked her right up. Even more so, her younger brother made the six hour drive to come see her yesterday (he hasn't been able to see her since before her transplant).
In her words she is "breathing deep, making these lungs work it, moving it around and trying to drain the extra fluid". She walked about 100 m yesterday, twice, and her strength has already improved (not as wobbly!). No doubt all that working out and staying strong before transplant helped loads.
So far, today her vision is a bit blurry still and she in only allowed 1 L of liquid, but things seem to be holding steady.
- Lindsay
Tuesday, July 20, 2010
Morning Update
Hattie had a good night breathing on her own. Today her 02 (oxygen) is 96 percent on room air and 95 while walking. She has been texting me today and yesterday (good signs!) and she informed me that she will be going on TWO walks today. The first walk was "Soo hard" in her words, but she is determined to work a second one in.
She is still not allowed to eat or drink anything, and is limited to "swishing and spitting" water.
I will add more when I speak to H''s mom later.
- Lindsay
She is still not allowed to eat or drink anything, and is limited to "swishing and spitting" water.
I will add more when I speak to H''s mom later.
- Lindsay
Monday, July 19, 2010
Quick Update
Hey everyone,
I'm just going to do a quick little update here since I know people get worried when they haven't heard anything!
Hattie has been showing small improvements over the weekend. She was able to reads some messages on her blackberry and look at some photo from Saturday CFforCF carwash. Earlier today she was even able to go for a short walk with the physio (still attached to the vent).
Everything is a bigger challenge now because she has lost so much muscle in the week she was bedridden, but her mom says her determined, fighting spirit is back in action.
In more good news, they were removing the vent today at 2 pm--and hopefully she is DONE with that now!
There is still some fluid on the lungs, which they are dealing with, and the CT scan results showed nothing significant (infection wise)--a good sign. Her white blood cell count (WBC) is also coming down.
The next big hurtle will come next week when they try to sort out her anti rejection drugs (which were causing her a lot of trouble in the first place). Right now she on a 'temporary' drug, meaning she can only stay on it for two weeks. The docs have a good week to figure it out though, and it seems that Hattie is slowly coming back.
Cautiously optimistic, but baby steps in the right direction!
This was a hurried update, but I thought I'd let you all know. Keep sending those positive vibes!!
- Lindsay
I'm just going to do a quick little update here since I know people get worried when they haven't heard anything!
Hattie has been showing small improvements over the weekend. She was able to reads some messages on her blackberry and look at some photo from Saturday CFforCF carwash. Earlier today she was even able to go for a short walk with the physio (still attached to the vent).
Everything is a bigger challenge now because she has lost so much muscle in the week she was bedridden, but her mom says her determined, fighting spirit is back in action.
In more good news, they were removing the vent today at 2 pm--and hopefully she is DONE with that now!
There is still some fluid on the lungs, which they are dealing with, and the CT scan results showed nothing significant (infection wise)--a good sign. Her white blood cell count (WBC) is also coming down.
The next big hurtle will come next week when they try to sort out her anti rejection drugs (which were causing her a lot of trouble in the first place). Right now she on a 'temporary' drug, meaning she can only stay on it for two weeks. The docs have a good week to figure it out though, and it seems that Hattie is slowly coming back.
Cautiously optimistic, but baby steps in the right direction!
This was a hurried update, but I thought I'd let you all know. Keep sending those positive vibes!!
- Lindsay
Friday, July 16, 2010
Day 11: Stand Still
Not too much to report today. H still remains on the vent, with no talks on when they will extubate her again.
She spent most of today sedated, but they are hoping to reduce sedation tomorrow so she can start communicating.
Today the surgeons also ordered a CT scan and the infectious disease team stopped by for a review--they are hoping to get to the bottom of this so she can get back on track.
Yesterday she was hit with a lot of anti-rejection drugs, antibiotics and steroids to try to control whatever is holding her back, which is probably what made her so anxious and paranoid.
The good news (we always end with this) is that her sodium issues have finally been resolved. The pieces of the puzzle are slowly coming together.
Hoping to figure this setback out soon!
- Lindsay
Thursday, July 15, 2010
Day 10: Another Challenging Day
Hey Everyone,
I apologize for the day gap.
Yesterday was 'stable', meaning there was not much improvement, but no decline either. Hattie was happy to have her older brother around for a few days to share stories and bring calm and "logic" (in her mom's words) to the situation. Unfortunately, today he had to return to work.
Today was tough again for Hatts, she remains in ICU and has been getting very little rest because the anti-rejection drugs have her in a constant state of paranoia. There is also some 'moisture' on the lungs, so once again she was intubated and sedated so she can get some rest.
The good news is that her infection is gone and she is only on Tylenol 3's for pain management. It's one step forward and two steps back.
And so continues the steady climb.
- Lindsay
I apologize for the day gap.
Yesterday was 'stable', meaning there was not much improvement, but no decline either. Hattie was happy to have her older brother around for a few days to share stories and bring calm and "logic" (in her mom's words) to the situation. Unfortunately, today he had to return to work.
Today was tough again for Hatts, she remains in ICU and has been getting very little rest because the anti-rejection drugs have her in a constant state of paranoia. There is also some 'moisture' on the lungs, so once again she was intubated and sedated so she can get some rest.
The good news is that her infection is gone and she is only on Tylenol 3's for pain management. It's one step forward and two steps back.
And so continues the steady climb.
- Lindsay
Tuesday, July 13, 2010
Day Eight: Back to Baby Steps
Hattie has had multiple issues following transplant, two of them (rejection and infection) are considered imminent complications. Before transplant you are warned that you will experience rejection or infection and she has been experiencing both.
These two things, combined with the low sodium, landed H back in ICU yesterday. It was quite a stress on her and the family as 15 people crowded around the room and Dr. K (the surgeon who performed her transplant) re-intubated her last night.
The low sodium seems to have started over the weekend (Saturday), which is probably what was causing the blurred vision, hallucinations and anxiety--all things that were initially put down to the anti-rejection drugs and indeed one of the medications is also suspected to have caused some of these symptoms. In addition to the low sodium, she was experiencing fluid on the lungs.
When the medical staff tried to explain the symptoms of low-sodium to Hattie's family, they said it was like "being stuck in a desert for three days".
A lot of eyes were on her yesterday and throughout today, including the eyes of Dr. S and two of the other surgeons Dr. T and Dr. Y, along with a staff member A. Hattie's mom was especially touched when one of the surgeons (Dr. T) went in today, held Hattie's hand and gave her a reassuring pat.
Although she is weak from being bedridden for the past two days and having nothing to eat (they do not want her sodium levels to rise too quickly because it could have serious implications), her vision has already begun to improve (she can now read the digital clock on her bedside table) and was extubated at 1 PM. She's now just resting on 02. Her WBC (which measures the white blood cells in your blood that fight infection) has decreased to 14.3 from about 25 on Sunday night.
Slowly, she is climbing back--it's quite a journey H!
- Lindsay
These two things, combined with the low sodium, landed H back in ICU yesterday. It was quite a stress on her and the family as 15 people crowded around the room and Dr. K (the surgeon who performed her transplant) re-intubated her last night.
The low sodium seems to have started over the weekend (Saturday), which is probably what was causing the blurred vision, hallucinations and anxiety--all things that were initially put down to the anti-rejection drugs and indeed one of the medications is also suspected to have caused some of these symptoms. In addition to the low sodium, she was experiencing fluid on the lungs.
When the medical staff tried to explain the symptoms of low-sodium to Hattie's family, they said it was like "being stuck in a desert for three days".
A lot of eyes were on her yesterday and throughout today, including the eyes of Dr. S and two of the other surgeons Dr. T and Dr. Y, along with a staff member A. Hattie's mom was especially touched when one of the surgeons (Dr. T) went in today, held Hattie's hand and gave her a reassuring pat.
Although she is weak from being bedridden for the past two days and having nothing to eat (they do not want her sodium levels to rise too quickly because it could have serious implications), her vision has already begun to improve (she can now read the digital clock on her bedside table) and was extubated at 1 PM. She's now just resting on 02. Her WBC (which measures the white blood cells in your blood that fight infection) has decreased to 14.3 from about 25 on Sunday night.
Slowly, she is climbing back--it's quite a journey H!
- Lindsay
Monday, July 12, 2010
Day Seven: Back in ICU
It's been one week since Hattie's transplant and with great determination she has taken baby steps forward in the right direction. However, as is the case in life, no road is smooth and no journey follows a perfect plan.
Today H had her first major setback and she is now back in ICU. I don't have the details--her parents were too emotionally exhausted to discuss it this evening and of course I respect that--but I do know that her sodium levels are low (I'm not quite sure what that means post-tx, perhaps some post-txers could chime in?).
The past few days have been a little rough for H, she sent me at text on Saturday night (the first since before she was wheeled into surgery--so I was very excited!) and said the recovery has been rough. She wondered how long it will take to feel normal again--her eyes are blurry and sore and her chest tubes are a bother (well I'm sure calling them a "bother" is a mild way to put it!). In her own words she is taking it "hour-by-hour" rather than day-by-day.
So today was a stumble, which is frustrating for everyone, but with all your positive vibes (from around the world!) she will be back on track in no time. Keep 'em coming!
- Lindsay
Today H had her first major setback and she is now back in ICU. I don't have the details--her parents were too emotionally exhausted to discuss it this evening and of course I respect that--but I do know that her sodium levels are low (I'm not quite sure what that means post-tx, perhaps some post-txers could chime in?).
The past few days have been a little rough for H, she sent me at text on Saturday night (the first since before she was wheeled into surgery--so I was very excited!) and said the recovery has been rough. She wondered how long it will take to feel normal again--her eyes are blurry and sore and her chest tubes are a bother (well I'm sure calling them a "bother" is a mild way to put it!). In her own words she is taking it "hour-by-hour" rather than day-by-day.
So today was a stumble, which is frustrating for everyone, but with all your positive vibes (from around the world!) she will be back on track in no time. Keep 'em coming!
- Lindsay
Saturday, July 10, 2010
Day Four: Nausea
Hey Everyone,
Not too much to report today, there is still progress but H had a rough day. As her body adjusts to the new regime of drugs she is getting a lot of nausea and has started hallucinating--she had a full conversation with her mom... only her mom wasn't there--she is also having very vivid dreams. H keeps asking everyone "is this normal?" and the medical staff are ensuring her that it is, it is all part of the process and part of the good-day-bad-day roller coaster.
Otherwise, today she showed improvement when she did her lung exercises. One involves breathing into a device that pushes up a ball in a little tower, and today she was able to hold it up longer, signifying that her strength is improving.
We will continue updates on Monday. H's parents and I decided that since progress will likely be slow over the next few days, we'll give a more thorough update after the weekend.
Until then,
- Lindsay
Not too much to report today, there is still progress but H had a rough day. As her body adjusts to the new regime of drugs she is getting a lot of nausea and has started hallucinating--she had a full conversation with her mom... only her mom wasn't there--she is also having very vivid dreams. H keeps asking everyone "is this normal?" and the medical staff are ensuring her that it is, it is all part of the process and part of the good-day-bad-day roller coaster.
Otherwise, today she showed improvement when she did her lung exercises. One involves breathing into a device that pushes up a ball in a little tower, and today she was able to hold it up longer, signifying that her strength is improving.
We will continue updates on Monday. H's parents and I decided that since progress will likely be slow over the next few days, we'll give a more thorough update after the weekend.
Until then,
- Lindsay
Thursday, July 8, 2010
Day Three: Slowly But Surely
Today was H's first full day in the step down unit. She was in a lot of pain, which is being managed, but despite that she was able to walk even longer today.
Being the sociable girl she is, H is starting to get a little frustrated about being so stoned/drugged up from all the painkillers, since it knocks her out in waves. Her parents said she is awake for 15-minute intervals, before dozing off again, sometimes in mid-sentence or after rolling her eyes at her mom.
Thankfully, she was awake when her transplant surgeon came in today to answer any questions she had--her parents were very interested in what their drugged up daughter would come up with--and she did have one: "What did my old lungs look like?" It might sound like a morbid question to some, but she was genuinely curious. The surgeon confirmed they were diseased and full of infection.
No tubes were removed today, although they were considering removing the catheter, H elected to leave it in for one more day so she didn't have to worry about the risks. Maybe tomorrow.
They also increased her rejection drugs today, which meant she was very nauseous. To give you an idea of how strong these pills are, when she was given one of the medications she was instructed not to touch them with her hands because the acid would burn her fingers--and to swallow it really quickly. Not exactly the type of thing you want to hear, but she took them anyway.
H's mom was also pleased to have a little reunion with the St. Mikes team today; they had just finished up a meeting about other pre-tx patients and stopped by for a little chat. I'm sure it was nice to see familiar faces in a world of everything new.
Reunions continued into this evening as H's dear friend and I went to the TGH lounge (with a Starbucks) to meet up with her parents. I am happy to report they look well--relieved almost--even though they know there is a long way to go. The difference is everything is going in the right direction instead of going in the wrong direction for so long. H's mom was looking stylish and sporting her Hattitude. I gave them "air hugs" as I left, since we always maintain a distance to avoid any cross-contamination* see below for explanation.
Today was tougher, but it was still another baby step forward!
- Lindsay
P.S. Apparently there have been a lot of people asking who I am in relation to Hattie and how I know the medical terminology. I also have Cystic Fibrosis and was assessed for a tx last year (but I'm currently too healthy to be listed). H and I have been close friends for a while now and refer to each other as "Cystic Cysters". Although we cannot ever hang out in close contact due to infection control issues (we can pass bad "bugs" to each other) we are always chatting throughout the day via e-mail, skype, phone or text! So we are very close, despite the barriers!
Being the sociable girl she is, H is starting to get a little frustrated about being so stoned/drugged up from all the painkillers, since it knocks her out in waves. Her parents said she is awake for 15-minute intervals, before dozing off again, sometimes in mid-sentence or after rolling her eyes at her mom.
Thankfully, she was awake when her transplant surgeon came in today to answer any questions she had--her parents were very interested in what their drugged up daughter would come up with--and she did have one: "What did my old lungs look like?" It might sound like a morbid question to some, but she was genuinely curious. The surgeon confirmed they were diseased and full of infection.
No tubes were removed today, although they were considering removing the catheter, H elected to leave it in for one more day so she didn't have to worry about the risks. Maybe tomorrow.
They also increased her rejection drugs today, which meant she was very nauseous. To give you an idea of how strong these pills are, when she was given one of the medications she was instructed not to touch them with her hands because the acid would burn her fingers--and to swallow it really quickly. Not exactly the type of thing you want to hear, but she took them anyway.
H's mom was also pleased to have a little reunion with the St. Mikes team today; they had just finished up a meeting about other pre-tx patients and stopped by for a little chat. I'm sure it was nice to see familiar faces in a world of everything new.
Reunions continued into this evening as H's dear friend and I went to the TGH lounge (with a Starbucks) to meet up with her parents. I am happy to report they look well--relieved almost--even though they know there is a long way to go. The difference is everything is going in the right direction instead of going in the wrong direction for so long. H's mom was looking stylish and sporting her Hattitude. I gave them "air hugs" as I left, since we always maintain a distance to avoid any cross-contamination* see below for explanation.
Today was tougher, but it was still another baby step forward!
- Lindsay
P.S. Apparently there have been a lot of people asking who I am in relation to Hattie and how I know the medical terminology. I also have Cystic Fibrosis and was assessed for a tx last year (but I'm currently too healthy to be listed). H and I have been close friends for a while now and refer to each other as "Cystic Cysters". Although we cannot ever hang out in close contact due to infection control issues (we can pass bad "bugs" to each other) we are always chatting throughout the day via e-mail, skype, phone or text! So we are very close, despite the barriers!
Wednesday, July 7, 2010
Day Two: "It's a miracle" "It's not a miracle, I'm working my butt off!"
First, a note about updates, they will not by hourly--as they were during the surgery--simply because the progress will now take place over a longer period of time (but knowing H, not that long!). So, I figured it will be easier to give a recap of the day--since I usually speak to H's mom or dad at the end of the day anyway--about everything she has been up to!
When H's parents arrived this morning she was in quite a bit of pain so they increased her painkillers. With transplant especially, since they want you up and moving around to regain your strength, it is sooo important to stay on top of the pain management. It must be working because she was able to DOUBLE her walk with the physiotherapist since yesterday. Her mom took a long look at her today and said "It's a miracle," at which point H responded, "It's not a miracle, I'm working my butt off!"
The tubes are starting to fade away. When H's mom arrived this morning she had no 02 prongs on (they were later put back on, but I'm sure she appreciated the break since she has been complaining about the irritation the prongs cause where they hook behind the ears). The feeding tube was removed and she had two chest tubes removed!
She did a lot of well-deserved resting today and told her mom to report this to me: "Tell Lindsay it's too easy to breath". She had to ask the nurse if she was doing it right or even breathing at all since she cannot feel (the nerves are damaged during tx, so it takes a long time to get feeling back). It's absurd to imagine, but CFers are always so aware of their breathing--trying to decipher between a good day and a bad day and a really bad day. Most people don't have to think about that, it just is.
In more good news, H will be moving down to the step-down unit at about 7 pm tonight. This is basically the bridge between the ICU and the ward. On the ICU there is one nurse assigned to every patient whereas in the step-down unit there is one nurse for every two patients. This all means she is slowly regaining her independence, woo!
As a last little sign-off, H's mom just walked into the room this evening as she was enjoying her first meal since tx (yummy jello and broth), she also had a final photo taken with her nurse and sported her "first genuine smile"-in her words (I'm hoping that means first genuine smile since tx and she hasn't been faking it her whole life ha ha ha).
Great closing to day two!
- Lindsay
Tuesday, July 6, 2010
First Day With New Lungs!
As promised, a more detailed account of H's first day of recovery!
Around 8 am H's parents arrived at the ICU. They had seen her the night before when she was sedated, but the nurse instructed them to go home to rest and come back refreshed in the morning. Fortunately, they were able to stay at a friend's condo downtown, which is only a 20 minute walk away. The visit did not start out smoothly...for H's mom, wouldn't you know the poor woman FAINTED? She later said it was a combination of the heat, stress (seeing H connected to countless tubes and wires) and lack of eating anything substantial--only some cheese and crackers the day before. The nurse sat her mom outside the room and told her to go get some breakfast. GET SOME FOOD IN THAT WOMAN, STAT!
H, meanwhile was currently busy learning to breath with the ventilator. She would later tell her parents that this was one of the hardest things to do--learn to breath. I've heard a few post-tx friends try to describe how difficult it is to me, because with CF you are so used to laboured, quickened and shallow breaths that breathing, really breathing, is a whole new realm--a whole new learning experience. I can't wait for H to come on here and give you her own account!
By mid-morning they were able to remove the breathing tube completely, which meant she no longer had to frantically scribble notes and questions to her family and nurse. She is now only on 3 L of 02, which is pretty close to what she was on pre-tx. BUT instead of sats at 89-90 (which she was before tx on about the same amount of 02) she is now resting at 100%. Top of the class!
So she is now able to talk freely, but her voice is reduced to a whisper still due to the pain and the feeding tube (aka NG tube). She has a pain pump, so while she still feels pain--she is significantly stoned, I'm sure.
Since they want you moving ASAP after tx, they had H sitting up in a chair this morning and then had her stand up and walk around with a special walker later on. Despite the chest tubes, IV pumps, catheters and NG tube, she apparently did very well! Understandably she was whipped after and needed a rest.
By noonish, H's dad said that she was "Hattie again". Her mom said as early as last night that her eyelids--for the first time in years--were not so dark, they were back to their normal colour, and her complexion is already pink. Talking to her today, she said she has her 'kick' back and has a sense of hope now. Hattie is back in the building, folks! WATCH OUT.
Of course, she still has a long way to go and everything is day-by-day. Dr. C, who is a Dr. at both St. Mikes and TGH (she serves as our 'bridge') came up to visit them today and said that she is not out of the woods just yet. She said it will be like a rollercoaster and there will be good days and bad days.
For now, Hattie remains in the ICU and has all her chest tubes, IV poles, 02, catheter and an NG tube to deal with. One by one as they are taken away, H will get closer to home. And eventually, sitting on that beach in Barbados!
Our girl is making great progress!
P.S. A sidenote I nearly forgot to include: Today Hattie decided to 'test' her new lungs out by holding her breath and then taking in a huge deep breath afterward. I know she has talked about doing this--getting the air deep down in her lungs--for a long time. And she was elated to finally give it a go.
- Lindsay
Around 8 am H's parents arrived at the ICU. They had seen her the night before when she was sedated, but the nurse instructed them to go home to rest and come back refreshed in the morning. Fortunately, they were able to stay at a friend's condo downtown, which is only a 20 minute walk away. The visit did not start out smoothly...for H's mom, wouldn't you know the poor woman FAINTED? She later said it was a combination of the heat, stress (seeing H connected to countless tubes and wires) and lack of eating anything substantial--only some cheese and crackers the day before. The nurse sat her mom outside the room and told her to go get some breakfast. GET SOME FOOD IN THAT WOMAN, STAT!
H, meanwhile was currently busy learning to breath with the ventilator. She would later tell her parents that this was one of the hardest things to do--learn to breath. I've heard a few post-tx friends try to describe how difficult it is to me, because with CF you are so used to laboured, quickened and shallow breaths that breathing, really breathing, is a whole new realm--a whole new learning experience. I can't wait for H to come on here and give you her own account!
By mid-morning they were able to remove the breathing tube completely, which meant she no longer had to frantically scribble notes and questions to her family and nurse. She is now only on 3 L of 02, which is pretty close to what she was on pre-tx. BUT instead of sats at 89-90 (which she was before tx on about the same amount of 02) she is now resting at 100%. Top of the class!
So she is now able to talk freely, but her voice is reduced to a whisper still due to the pain and the feeding tube (aka NG tube). She has a pain pump, so while she still feels pain--she is significantly stoned, I'm sure.
Since they want you moving ASAP after tx, they had H sitting up in a chair this morning and then had her stand up and walk around with a special walker later on. Despite the chest tubes, IV pumps, catheters and NG tube, she apparently did very well! Understandably she was whipped after and needed a rest.
By noonish, H's dad said that she was "Hattie again". Her mom said as early as last night that her eyelids--for the first time in years--were not so dark, they were back to their normal colour, and her complexion is already pink. Talking to her today, she said she has her 'kick' back and has a sense of hope now. Hattie is back in the building, folks! WATCH OUT.
Of course, she still has a long way to go and everything is day-by-day. Dr. C, who is a Dr. at both St. Mikes and TGH (she serves as our 'bridge') came up to visit them today and said that she is not out of the woods just yet. She said it will be like a rollercoaster and there will be good days and bad days.
For now, Hattie remains in the ICU and has all her chest tubes, IV poles, 02, catheter and an NG tube to deal with. One by one as they are taken away, H will get closer to home. And eventually, sitting on that beach in Barbados!
Our girl is making great progress!
P.S. A sidenote I nearly forgot to include: Today Hattie decided to 'test' her new lungs out by holding her breath and then taking in a huge deep breath afterward. I know she has talked about doing this--getting the air deep down in her lungs--for a long time. And she was elated to finally give it a go.
- Lindsay
Monday, July 5, 2010
Updates
I will post updates here throughout the day:
1:00 am: Hattie gets the call!
2:00 am: Hattie and her mom are transferred to TGH from St. Mikes via ambulance. Hattie's mom tells me that the paramedics were both from Scarborough and happened to be dropping off a patient at St. Mikes. In typical Dunstan style, since they hadn't had a break all night, H's mom offered them some of their Grandma's treats!
8:25 am: Lungs will be arriving in 40 minutes. Fellow said they are good "quite good". Hattie will be going into surgery VERY soon.
10:00 am: Hattie is wheeled in surgery. Has a few last moments with her Mom, Dad and older brother and sees a fellow CFer (post tx and doing Fabulous) along the way! All good signs. Hattie tried to contact her younger bro before she was wheeled in, but he is unfortunately in the sticks and hard to reach!
Hattie is also a VERY lucky girl, Dr. Shaf Keshavjee--the top dog--will be performing her surgery. He is a brilliant man that pioneered the Ex-Vivo system.
12:15 pm: Message from her older brother: "The nurse came out now, and everything is going how it should and smoothly."
The nurse said they estimate that the surgery should be complete by around 5 pm, if all continues to go as planned and they do not need to use the heart-lung machine.
Her old lungs seem to be coming out easily since she does not have a lot of lesions and scar tissue. The new lungs have not been transplanted yet.
3:13 pm: Out with the old and in with the new! Update from H's Family: "Nurse just came out to tell us all continues to go well. Now starting second lung. Expecting it will be another 1.5 hours." We're in the final stretch!
3:44 pm: Transplant COMPLETE! The surgeon just informed H's family that the lungs are transplanted. Now she will be stitched up (yeah, that sounds brutal--but it's true!) and sent up to ICU where she will start her recovery. Her fam jam should be able to see her in the next hour. The doctors are not sure if they will wake her up tonight or tomorrow, but I'm sure she is feeling all the positive vibes! Fabulous job H!
- Lindsay
1:00 am: Hattie gets the call!
2:00 am: Hattie and her mom are transferred to TGH from St. Mikes via ambulance. Hattie's mom tells me that the paramedics were both from Scarborough and happened to be dropping off a patient at St. Mikes. In typical Dunstan style, since they hadn't had a break all night, H's mom offered them some of their Grandma's treats!
8:25 am: Lungs will be arriving in 40 minutes. Fellow said they are good "quite good". Hattie will be going into surgery VERY soon.
10:00 am: Hattie is wheeled in surgery. Has a few last moments with her Mom, Dad and older brother and sees a fellow CFer (post tx and doing Fabulous) along the way! All good signs. Hattie tried to contact her younger bro before she was wheeled in, but he is unfortunately in the sticks and hard to reach!
Hattie is also a VERY lucky girl, Dr. Shaf Keshavjee--the top dog--will be performing her surgery. He is a brilliant man that pioneered the Ex-Vivo system.
12:15 pm: Message from her older brother: "The nurse came out now, and everything is going how it should and smoothly."
The nurse said they estimate that the surgery should be complete by around 5 pm, if all continues to go as planned and they do not need to use the heart-lung machine.
Her old lungs seem to be coming out easily since she does not have a lot of lesions and scar tissue. The new lungs have not been transplanted yet.
3:13 pm: Out with the old and in with the new! Update from H's Family: "Nurse just came out to tell us all continues to go well. Now starting second lung. Expecting it will be another 1.5 hours." We're in the final stretch!
3:44 pm: Transplant COMPLETE! The surgeon just informed H's family that the lungs are transplanted. Now she will be stitched up (yeah, that sounds brutal--but it's true!) and sent up to ICU where she will start her recovery. Her fam jam should be able to see her in the next hour. The doctors are not sure if they will wake her up tonight or tomorrow, but I'm sure she is feeling all the positive vibes! Fabulous job H!
- Lindsay
Got the Call!
Hey everyone, this is Lindsay again with the post you have been waiting for...
Around 1 am tonight my dreams were interrupted by a strange ring (I assigned Hattie's number a different ring than everyone else and apparently forgot about it!) I checked my voicemail and it was an excited/anxious/scared/in disbelief Hattie saying "Lindsay, my nurse just came into my room and they have lungs... where ARE you girl???" ha ha ha. Needless to say I called our girl back immediately!
She has since been transferred to TGH, where the transplant will take place, and is waiting for the final word that the surgery is a GO. So far her surgery is scheduled for 8 am (less than four hours away, folks!)
We agreed that everything has fallen into place at the right time: her dad just purchased a disposable camera to document her tx, the past few days she has only just begun to lose her muscle mass (which means she has some to spare), her friend is starting a job at TGH on Monday and--frankly--anytime is a good time for new lungs! Now the recovery process can finally begin.
Go Hattie go!
I will post updates as soon as I get them.
Continue to send your positive vibes and please think of the donor family tonight, because even though we have a GREAT reason to celebrate, there is a family out there that has had to let their loved one go and is in immense pain. Those who are so selfless deserve our love and support--even if they don't know we are giving it to them!
Around 1 am tonight my dreams were interrupted by a strange ring (I assigned Hattie's number a different ring than everyone else and apparently forgot about it!) I checked my voicemail and it was an excited/anxious/scared/in disbelief Hattie saying "Lindsay, my nurse just came into my room and they have lungs... where ARE you girl???" ha ha ha. Needless to say I called our girl back immediately!
She has since been transferred to TGH, where the transplant will take place, and is waiting for the final word that the surgery is a GO. So far her surgery is scheduled for 8 am (less than four hours away, folks!)
We agreed that everything has fallen into place at the right time: her dad just purchased a disposable camera to document her tx, the past few days she has only just begun to lose her muscle mass (which means she has some to spare), her friend is starting a job at TGH on Monday and--frankly--anytime is a good time for new lungs! Now the recovery process can finally begin.
Go Hattie go!
I will post updates as soon as I get them.
Continue to send your positive vibes and please think of the donor family tonight, because even though we have a GREAT reason to celebrate, there is a family out there that has had to let their loved one go and is in immense pain. Those who are so selfless deserve our love and support--even if they don't know we are giving it to them!
Friday, July 2, 2010
breathless
The word breathless has taken on a whole new meaning. I thought I knew what being out of breath was. I thought I knew what not breathing was like...no...not until this week did I know what it is like to struggle...and that's saying something!
I cannot even get over how much my breath has now been taken from me. Doing anything leaves me gasping, haunted, winded, exploded, breathless. It is absolutly insane, terrifying and unbelievable that something as breathing can be soooo hard, even harder then before!
Thank you to all the posts, emails, comments, text messages, phone calls, love and postive thought vibes. They mean the world to me, so keep them coming! I am reading every single one, so thank you!
We are doing good! Hanging in! One day at a time! Thanks again everyone!
I cannot even get over how much my breath has now been taken from me. Doing anything leaves me gasping, haunted, winded, exploded, breathless. It is absolutly insane, terrifying and unbelievable that something as breathing can be soooo hard, even harder then before!
Thank you to all the posts, emails, comments, text messages, phone calls, love and postive thought vibes. They mean the world to me, so keep them coming! I am reading every single one, so thank you!
We are doing good! Hanging in! One day at a time! Thanks again everyone!
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