Re: My transplant evaluation - Bruce and Sher

[Guest guest]

Bruce and Sher

I'm truly touched by both of you. Thank you for your words

Love Ze xxx> > >> > >> > >> > >> > >> > >> > >> > >> > > Hi, I'm back, I thought I'd write down what happened and what was> > talked about etc.> > > Now my evaluation was slightly different as normally I would still> be> > in on the thursday while my case would be discussed and then would get> > the answer in the afternoon, but the full team isn't there today, so> my> > case is going to be discussed NEXT thursday.> > > So on monday morning we trailed up to the Harefield Hospital. I was> > given a private room and have been assured that private rooms are the> > norm on a transplant ward. They immediately started a 24 hr urine> > collection, (I had to pee in a bed pan that was on the loo and tip it> > into the collection bottle, not as hard as it originallly looked, I> > didn't encounter any spillage). Then I had a 12 point ecg, and then> > attached to a 24hour 'tape'. They attach 3 wires to you, 2 on the> lower> > part of the chest to the side and one on the upper chest and you are> > given a mini ecg machine, which is about the size of a blackberry. It> > has a clip so you can attach it to your waistband and forget about it.> > They took 15 tubes of blood and sent me down for my lfts. A doctor> came> > and checked me out generally in the normal way that any doc will do on> > admission to a ward. A dedicated Tx Nurse took my medical history,> > occasionally asking unexpected questions where> > > we determined that I do NOT suffer with erectile disfunction! Phew!> I> > was given a patient information booklet, which is mine to keep, and> lots> > of forms to fill in, including a psycological one. (It gives you a> > range of 'feelings' and gives you a scale on how often you might have> > those feelings). I was told to be nil-by-mouth from midnight so that> I> > can have a fasting blood test in the morning.> > > Day 2 and I was woken at 6am so a nurse could take my fasting bloods> > and I didn't have to miss out on or wait for a cup of tea or> breakfast,> > which I thought was quite nice (if anyone remembers my trial of NBM> when> > I was waiting of my angio will know that I don't manage NBM all that> > well ) I had a CT scan, a bone scan and another scan that used dye (so> I> > had a cannula inserted in the ward ready) All these scans were done> in> > the same place and with the same machine so that I didn't have to> move.> > The dye is weird, you get a very hot feeling, a very strange metallic> > taste in your mouth and finally a warmth around your groin that gives> > you the sensation of incontinence, but don't worry, it's only the> > sensation, you don't haven't actually wee'd. Also at some point they> > came and sprayed something under my tongue that is to dilate the blood> > vessals in the heart. They will take your heart rate before you go in> > and may decide to administer beta-blockers> > > if they need to slow your heart rate down (if it's resting rate is> > above 70) in order to get a clearer picture. Once the 24 hour urine> > collection is over they then want a urine sample. I also went down> for> > the 6 MWT.> > > Day 3 brought an echo, chest xray, arterial blood sample (finally,> > they'd tried the day before, but couldn't find any!). I spoke at> length> > with a psycologist. She is sending me some information in the post> that> > she thinks will be useful. Please remember to be honest when talking> > about anxiety issues. They EXPECT you have some anxiety in the run up> > to the tx and would be concerned if you weren't. I was visited by the> > ward doctors and the dedicated tx nurse all together where they> > discussed my results so far, they would tell you at this point if they> > had found anything that needed to be addressed. Finally I was> visited> > by a tx consultant, who discussed everything else that was on his> list,> > which was really making sure that I am aware of what I am in for.> > > At all times they were prepared to answer any questions, and no> > question was considered silly or unnecessary. I was given the times> > for any trips off the wards for tests. It felt quite relaxed. I> > thought I would be shunted around the hospital a lot more than I was,> > but I was given plenty of time to rest and relax. The only minor> issue> > was that they told me everything that I was due to see, then some> things> > were cancelled as they then decided that I didn't need that particular> > test, eg, I was told a dentist was coming to see me, but as i have> > regular check ups (every 6mths) it wasn't necessary.> > > I have asked for advice on how to help my daughter through all this> > and they are going to contact a post tx patient who was in a similar> > position to me with a young child, and ask if she is prepared to talk> to> > me.> > > I received lots of encouragement for the weightloss so far, which> was> > nice.> > > I have been told that so far everything looks good to proceed,> > although they didn't have all the results back yet. I will probably> be> > looking at a double lung tx. I have antibodies which can make> matching> > a donor a little more difficult, but apparently my frame (quite large> > for a girl) is in my favour. So it's swings and round abouts in the> > donor lottery. I will get the definite answer thursday evening.> > > I've left the hospital feeling a lot more confident about my> decision> > and more motivated in general, which can only be good.> > > Love Ze xx> > >> >>

[Guest guest]

Bruce and Sher

I'm truly touched by both of you. Thank you for your words

Love Ze xxx> > >> > >> > >> > >> > >> > >> > >> > >> > > Hi, I'm back, I thought I'd write down what happened and what was> > talked about etc.> > > Now my evaluation was slightly different as normally I would still> be> > in on the thursday while my case would be discussed and then would get> > the answer in the afternoon, but the full team isn't there today, so> my> > case is going to be discussed NEXT thursday.> > > So on monday morning we trailed up to the Harefield Hospital. I was> > given a private room and have been assured that private rooms are the> > norm on a transplant ward. They immediately started a 24 hr urine> > collection, (I had to pee in a bed pan that was on the loo and tip it> > into the collection bottle, not as hard as it originallly looked, I> > didn't encounter any spillage). Then I had a 12 point ecg, and then> > attached to a 24hour 'tape'. They attach 3 wires to you, 2 on the> lower> > part of the chest to the side and one on the upper chest and you are> > given a mini ecg machine, which is about the size of a blackberry. It> > has a clip so you can attach it to your waistband and forget about it.> > They took 15 tubes of blood and sent me down for my lfts. A doctor> came> > and checked me out generally in the normal way that any doc will do on> > admission to a ward. A dedicated Tx Nurse took my medical history,> > occasionally asking unexpected questions where> > > we determined that I do NOT suffer with erectile disfunction! Phew!> I> > was given a patient information booklet, which is mine to keep, and> lots> > of forms to fill in, including a psycological one. (It gives you a> > range of 'feelings' and gives you a scale on how often you might have> > those feelings). I was told to be nil-by-mouth from midnight so that> I> > can have a fasting blood test in the morning.> > > Day 2 and I was woken at 6am so a nurse could take my fasting bloods> > and I didn't have to miss out on or wait for a cup of tea or> breakfast,> > which I thought was quite nice (if anyone remembers my trial of NBM> when> > I was waiting of my angio will know that I don't manage NBM all that> > well ) I had a CT scan, a bone scan and another scan that used dye (so> I> > had a cannula inserted in the ward ready) All these scans were done> in> > the same place and with the same machine so that I didn't have to> move.> > The dye is weird, you get a very hot feeling, a very strange metallic> > taste in your mouth and finally a warmth around your groin that gives> > you the sensation of incontinence, but don't worry, it's only the> > sensation, you don't haven't actually wee'd. Also at some point they> > came and sprayed something under my tongue that is to dilate the blood> > vessals in the heart. They will take your heart rate before you go in> > and may decide to administer beta-blockers> > > if they need to slow your heart rate down (if it's resting rate is> > above 70) in order to get a clearer picture. Once the 24 hour urine> > collection is over they then want a urine sample. I also went down> for> > the 6 MWT.> > > Day 3 brought an echo, chest xray, arterial blood sample (finally,> > they'd tried the day before, but couldn't find any!). I spoke at> length> > with a psycologist. She is sending me some information in the post> that> > she thinks will be useful. Please remember to be honest when talking> > about anxiety issues. They EXPECT you have some anxiety in the run up> > to the tx and would be concerned if you weren't. I was visited by the> > ward doctors and the dedicated tx nurse all together where they> > discussed my results so far, they would tell you at this point if they> > had found anything that needed to be addressed. Finally I was> visited> > by a tx consultant, who discussed everything else that was on his> list,> > which was really making sure that I am aware of what I am in for.> > > At all times they were prepared to answer any questions, and no> > question was considered silly or unnecessary. I was given the times> > for any trips off the wards for tests. It felt quite relaxed. I> > thought I would be shunted around the hospital a lot more than I was,> > but I was given plenty of time to rest and relax. The only minor> issue> > was that they told me everything that I was due to see, then some> things> > were cancelled as they then decided that I didn't need that particular> > test, eg, I was told a dentist was coming to see me, but as i have> > regular check ups (every 6mths) it wasn't necessary.> > > I have asked for advice on how to help my daughter through all this> > and they are going to contact a post tx patient who was in a similar> > position to me with a young child, and ask if she is prepared to talk> to> > me.> > > I received lots of encouragement for the weightloss so far, which> was> > nice.> > > I have been told that so far everything looks good to proceed,> > although they didn't have all the results back yet. I will probably> be> > looking at a double lung tx. I have antibodies which can make> matching> > a donor a little more difficult, but apparently my frame (quite large> > for a girl) is in my favour. So it's swings and round abouts in the> > donor lottery. I will get the definite answer thursday evening.> > > I've left the hospital feeling a lot more confident about my> decision> > and more motivated in general, which can only be good.> > > Love Ze xx> > >> >>

[Guest guest]

Bruce and Sher

I'm truly touched by both of you. Thank you for your words

Love Ze xxx> > >> > >> > >> > >> > >> > >> > >> > >> > > Hi, I'm back, I thought I'd write down what happened and what was> > talked about etc.> > > Now my evaluation was slightly different as normally I would still> be> > in on the thursday while my case would be discussed and then would get> > the answer in the afternoon, but the full team isn't there today, so> my> > case is going to be discussed NEXT thursday.> > > So on monday morning we trailed up to the Harefield Hospital. I was> > given a private room and have been assured that private rooms are the> > norm on a transplant ward. They immediately started a 24 hr urine> > collection, (I had to pee in a bed pan that was on the loo and tip it> > into the collection bottle, not as hard as it originallly looked, I> > didn't encounter any spillage). Then I had a 12 point ecg, and then> > attached to a 24hour 'tape'. They attach 3 wires to you, 2 on the> lower> > part of the chest to the side and one on the upper chest and you are> > given a mini ecg machine, which is about the size of a blackberry. It> > has a clip so you can attach it to your waistband and forget about it.> > They took 15 tubes of blood and sent me down for my lfts. A doctor> came> > and checked me out generally in the normal way that any doc will do on> > admission to a ward. A dedicated Tx Nurse took my medical history,> > occasionally asking unexpected questions where> > > we determined that I do NOT suffer with erectile disfunction! Phew!> I> > was given a patient information booklet, which is mine to keep, and> lots> > of forms to fill in, including a psycological one. (It gives you a> > range of 'feelings' and gives you a scale on how often you might have> > those feelings). I was told to be nil-by-mouth from midnight so that> I> > can have a fasting blood test in the morning.> > > Day 2 and I was woken at 6am so a nurse could take my fasting bloods> > and I didn't have to miss out on or wait for a cup of tea or> breakfast,> > which I thought was quite nice (if anyone remembers my trial of NBM> when> > I was waiting of my angio will know that I don't manage NBM all that> > well ) I had a CT scan, a bone scan and another scan that used dye (so> I> > had a cannula inserted in the ward ready) All these scans were done> in> > the same place and with the same machine so that I didn't have to> move.> > The dye is weird, you get a very hot feeling, a very strange metallic> > taste in your mouth and finally a warmth around your groin that gives> > you the sensation of incontinence, but don't worry, it's only the> > sensation, you don't haven't actually wee'd. Also at some point they> > came and sprayed something under my tongue that is to dilate the blood> > vessals in the heart. They will take your heart rate before you go in> > and may decide to administer beta-blockers> > > if they need to slow your heart rate down (if it's resting rate is> > above 70) in order to get a clearer picture. Once the 24 hour urine> > collection is over they then want a urine sample. I also went down> for> > the 6 MWT.> > > Day 3 brought an echo, chest xray, arterial blood sample (finally,> > they'd tried the day before, but couldn't find any!). I spoke at> length> > with a psycologist. She is sending me some information in the post> that> > she thinks will be useful. Please remember to be honest when talking> > about anxiety issues. They EXPECT you have some anxiety in the run up> > to the tx and would be concerned if you weren't. I was visited by the> > ward doctors and the dedicated tx nurse all together where they> > discussed my results so far, they would tell you at this point if they> > had found anything that needed to be addressed. Finally I was> visited> > by a tx consultant, who discussed everything else that was on his> list,> > which was really making sure that I am aware of what I am in for.> > > At all times they were prepared to answer any questions, and no> > question was considered silly or unnecessary. I was given the times> > for any trips off the wards for tests. It felt quite relaxed. I> > thought I would be shunted around the hospital a lot more than I was,> > but I was given plenty of time to rest and relax. The only minor> issue> > was that they told me everything that I was due to see, then some> things> > were cancelled as they then decided that I didn't need that particular> > test, eg, I was told a dentist was coming to see me, but as i have> > regular check ups (every 6mths) it wasn't necessary.> > > I have asked for advice on how to help my daughter through all this> > and they are going to contact a post tx patient who was in a similar> > position to me with a young child, and ask if she is prepared to talk> to> > me.> > > I received lots of encouragement for the weightloss so far, which> was> > nice.> > > I have been told that so far everything looks good to proceed,> > although they didn't have all the results back yet. I will probably> be> > looking at a double lung tx. I have antibodies which can make> matching> > a donor a little more difficult, but apparently my frame (quite large> > for a girl) is in my favour. So it's swings and round abouts in the> > donor lottery. I will get the definite answer thursday evening.> > > I've left the hospital feeling a lot more confident about my> decision> > and more motivated in general, which can only be good.> > > Love Ze xx> > >> >>

[Guest guest]

Z, We all love you little one..   Love & Prayers, PeggyFlorida,  IPF/UIP 2004"I believe that friends are quiet angels who lift us to our feet, when our wings have trouble remembering how to fly."  Bruce and SherI'm truly touched by both of you.   Thank you for your wordsLove Ze xxx> > >> > >> > >> > >> > >> > >> > >> > >> > > Hi, I'm back, I thought I'd write down what happened and what was> > talked about etc.> > > Now my evaluation was slightly different as normally I would still> be> > in on the thursday while my case would be discussed and then would get> > the answer in the afternoon, but the full team isn't there today, so> my> > case is going to be discussed NEXT thursday.> > > So on monday morning we trailed up to the Harefield Hospital. I was> > given a private room and have been assured that private rooms are the> > norm on a transplant ward. They immediately started a 24 hr urine> > collection, (I had to pee in a bed pan that was on the loo and tip it> > into the collection bottle, not as hard as it originallly looked, I> > didn't encounter any spillage). Then I had a 12 point ecg, and then> > attached to a 24hour 'tape'. They attach 3 wires to you, 2 on the> lower> > part of the chest to the side and one on the upper chest and you are> > given a mini ecg machine, which is about the size of a blackberry. It> > has a clip so you can attach it to your waistband and forget about it.> > They took 15 tubes of blood and sent me down for my lfts. A doctor> came> > and checked me out generally in the normal way that any doc will do on> > admission to a ward. A dedicated Tx Nurse took my medical history,> > occasionally asking unexpected questions where> > > we determined that I do NOT suffer with erectile disfunction! Phew!> I> > was given a patient information booklet, which is mine to keep, and> lots> > of forms to fill in, including a psycological one. (It gives you a> > range of 'feelings' and gives you a scale on how often you might have> > those feelings). I was told to be nil-by-mouth from midnight so that> I> > can have a fasting blood test in the morning.> > > Day 2 and I was woken at 6am so a nurse could take my fasting bloods> > and I didn't have to miss out on or wait for a cup of tea or> breakfast,> > which I thought was quite nice (if anyone remembers my trial of NBM> when> > I was waiting of my angio will know that I don't manage NBM all that> > well ) I had a CT scan, a bone scan and another scan that used dye (so> I> > had a cannula inserted in the ward ready) All these scans were done> in> > the same place and with the same machine so that I didn't have to> move.> > The dye is weird, you get a very hot feeling, a very strange metallic> > taste in your mouth and finally a warmth around your groin that gives> > you the sensation of incontinence, but don't worry, it's only the> > sensation, you don't haven't actually wee'd. Also at some point they> > came and sprayed something under my tongue that is to dilate the blood> > vessals in the heart. They will take your heart rate before you go in> > and may decide to administer beta-blockers> > > if they need to slow your heart rate down (if it's resting rate is> > above 70) in order to get a clearer picture. Once the 24 hour urine> > collection is over they then want a urine sample. I also went down> for> > the 6 MWT.> > > Day 3 brought an echo, chest xray, arterial blood sample (finally,> > they'd tried the day before, but couldn't find any!). I spoke at> length> > with a psycologist. She is sending me some information in the post> that> > she thinks will be useful. Please remember to be honest when talking> > about anxiety issues. They EXPECT you have some anxiety in the run up> > to the tx and would be concerned if you weren't. I was visited by the> > ward doctors and the dedicated tx nurse all together where they> > discussed my results so far, they would tell you at this point if they> > had found anything that needed to be addressed. Finally I was> visited> > by a tx consultant, who discussed everything else that was on his> list,> > which was really making sure that I am aware of what I am in for.> > > At all times they were prepared to answer any questions, and no> > question was considered silly or unnecessary. I was given the times> > for any trips off the wards for tests. It felt quite relaxed. I> > thought I would be shunted around the hospital a lot more than I was,> > but I was given plenty of time to rest and relax. The only minor> issue> > was that they told me everything that I was due to see, then some> things> > were cancelled as they then decided that I didn't need that particular> > test, eg, I was told a dentist was coming to see me, but as i have> > regular check ups (every 6mths) it wasn't necessary.> > > I have asked for advice on how to help my daughter through all this> > and they are going to contact a post tx patient who was in a similar> > position to me with a young child, and ask if she is prepared to talk> to> > me.> > > I received lots of encouragement for the weightloss so far, which> was> > nice.> > > I have been told that so far everything looks good to proceed,> > although they didn't have all the results back yet. I will probably> be> > looking at a double lung tx. I have antibodies which can make> matching> > a donor a little more difficult, but apparently my frame (quite large> > for a girl) is in my favour. So it's swings and round abouts in the> > donor lottery. I will get the definite answer thursday evening.> > > I've left the hospital feeling a lot more confident about my> decision> > and more motivated in general, which can only be good.> > > Love Ze xx> > >> >>

[Guest guest]

Z, We all love you little one..   Love & Prayers, PeggyFlorida,  IPF/UIP 2004"I believe that friends are quiet angels who lift us to our feet, when our wings have trouble remembering how to fly."  Bruce and SherI'm truly touched by both of you.   Thank you for your wordsLove Ze xxx> > >> > >> > >> > >> > >> > >> > >> > >> > > Hi, I'm back, I thought I'd write down what happened and what was> > talked about etc.> > > Now my evaluation was slightly different as normally I would still> be> > in on the thursday while my case would be discussed and then would get> > the answer in the afternoon, but the full team isn't there today, so> my> > case is going to be discussed NEXT thursday.> > > So on monday morning we trailed up to the Harefield Hospital. I was> > given a private room and have been assured that private rooms are the> > norm on a transplant ward. They immediately started a 24 hr urine> > collection, (I had to pee in a bed pan that was on the loo and tip it> > into the collection bottle, not as hard as it originallly looked, I> > didn't encounter any spillage). Then I had a 12 point ecg, and then> > attached to a 24hour 'tape'. They attach 3 wires to you, 2 on the> lower> > part of the chest to the side and one on the upper chest and you are> > given a mini ecg machine, which is about the size of a blackberry. It> > has a clip so you can attach it to your waistband and forget about it.> > They took 15 tubes of blood and sent me down for my lfts. A doctor> came> > and checked me out generally in the normal way that any doc will do on> > admission to a ward. A dedicated Tx Nurse took my medical history,> > occasionally asking unexpected questions where> > > we determined that I do NOT suffer with erectile disfunction! Phew!> I> > was given a patient information booklet, which is mine to keep, and> lots> > of forms to fill in, including a psycological one. (It gives you a> > range of 'feelings' and gives you a scale on how often you might have> > those feelings). I was told to be nil-by-mouth from midnight so that> I> > can have a fasting blood test in the morning.> > > Day 2 and I was woken at 6am so a nurse could take my fasting bloods> > and I didn't have to miss out on or wait for a cup of tea or> breakfast,> > which I thought was quite nice (if anyone remembers my trial of NBM> when> > I was waiting of my angio will know that I don't manage NBM all that> > well ) I had a CT scan, a bone scan and another scan that used dye (so> I> > had a cannula inserted in the ward ready) All these scans were done> in> > the same place and with the same machine so that I didn't have to> move.> > The dye is weird, you get a very hot feeling, a very strange metallic> > taste in your mouth and finally a warmth around your groin that gives> > you the sensation of incontinence, but don't worry, it's only the> > sensation, you don't haven't actually wee'd. Also at some point they> > came and sprayed something under my tongue that is to dilate the blood> > vessals in the heart. They will take your heart rate before you go in> > and may decide to administer beta-blockers> > > if they need to slow your heart rate down (if it's resting rate is> > above 70) in order to get a clearer picture. Once the 24 hour urine> > collection is over they then want a urine sample. I also went down> for> > the 6 MWT.> > > Day 3 brought an echo, chest xray, arterial blood sample (finally,> > they'd tried the day before, but couldn't find any!). I spoke at> length> > with a psycologist. She is sending me some information in the post> that> > she thinks will be useful. Please remember to be honest when talking> > about anxiety issues. They EXPECT you have some anxiety in the run up> > to the tx and would be concerned if you weren't. I was visited by the> > ward doctors and the dedicated tx nurse all together where they> > discussed my results so far, they would tell you at this point if they> > had found anything that needed to be addressed. Finally I was> visited> > by a tx consultant, who discussed everything else that was on his> list,> > which was really making sure that I am aware of what I am in for.> > > At all times they were prepared to answer any questions, and no> > question was considered silly or unnecessary. I was given the times> > for any trips off the wards for tests. It felt quite relaxed. I> > thought I would be shunted around the hospital a lot more than I was,> > but I was given plenty of time to rest and relax. The only minor> issue> > was that they told me everything that I was due to see, then some> things> > were cancelled as they then decided that I didn't need that particular> > test, eg, I was told a dentist was coming to see me, but as i have> > regular check ups (every 6mths) it wasn't necessary.> > > I have asked for advice on how to help my daughter through all this> > and they are going to contact a post tx patient who was in a similar> > position to me with a young child, and ask if she is prepared to talk> to> > me.> > > I received lots of encouragement for the weightloss so far, which> was> > nice.> > > I have been told that so far everything looks good to proceed,> > although they didn't have all the results back yet. I will probably> be> > looking at a double lung tx. I have antibodies which can make> matching> > a donor a little more difficult, but apparently my frame (quite large> > for a girl) is in my favour. So it's swings and round abouts in the> > donor lottery. I will get the definite answer thursday evening.> > > I've left the hospital feeling a lot more confident about my> decision> > and more motivated in general, which can only be good.> > > Love Ze xx> > >> >>

[Guest guest]

LITTLE one???? I'm 5'7" and over 180lbs!

> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > > Hi, I'm back, I thought I'd write down what happened and what was> > > talked about etc.> > > > Now my evaluation was slightly different as normally I would > still> > be> > > in on the thursday while my case would be discussed and then > would get> > > the answer in the afternoon, but the full team isn't there > today, so> > my> > > case is going to be discussed NEXT thursday.> > > > So on monday morning we trailed up to the Harefield Hospital. > I was> > > given a private room and have been assured that private rooms > are the> > > norm on a transplant ward. They immediately started a 24 hr urine> > > collection, (I had to pee in a bed pan that was on the loo and > tip it> > > into the collection bottle, not as hard as it originallly looked, I> > > didn't encounter any spillage). Then I had a 12 point ecg, and then> > > attached to a 24hour 'tape'. They attach 3 wires to you, 2 on the> > lower> > > part of the chest to the side and one on the upper chest and you > are> > > given a mini ecg machine, which is about the size of a > blackberry. It> > > has a clip so you can attach it to your waistband and forget > about it.> > > They took 15 tubes of blood and sent me down for my lfts. A doctor> > came> > > and checked me out generally in the normal way that any doc will > do on> > > admission to a ward. A dedicated Tx Nurse took my medical history,> > > occasionally asking unexpected questions where> > > > we determined that I do NOT suffer with erectile disfunction! > Phew!> > I> > > was given a patient information booklet, which is mine to keep, and> > lots> > > of forms to fill in, including a psycological one. (It gives you a> > > range of 'feelings' and gives you a scale on how often you might > have> > > those feelings). I was told to be nil-by-mouth from midnight so > that> > I> > > can have a fasting blood test in the morning.> > > > Day 2 and I was woken at 6am so a nurse could take my fasting > bloods> > > and I didn't have to miss out on or wait for a cup of tea or> > breakfast,> > > which I thought was quite nice (if anyone remembers my trial of NBM> > when> > > I was waiting of my angio will know that I don't manage NBM all > that> > > well ) I had a CT scan, a bone scan and another scan that used > dye (so> > I> > > had a cannula inserted in the ward ready) All these scans were done> > in> > > the same place and with the same machine so that I didn't have to> > move.> > > The dye is weird, you get a very hot feeling, a very strange > metallic> > > taste in your mouth and finally a warmth around your groin that > gives> > > you the sensation of incontinence, but don't worry, it's only the> > > sensation, you don't haven't actually wee'd. Also at some point > they> > > came and sprayed something under my tongue that is to dilate the > blood> > > vessals in the heart. They will take your heart rate before you > go in> > > and may decide to administer beta-blockers> > > > if they need to slow your heart rate down (if it's resting > rate is> > > above 70) in order to get a clearer picture. Once the 24 hour urine> > > collection is over they then want a urine sample. I also went down> > for> > > the 6 MWT.> > > > Day 3 brought an echo, chest xray, arterial blood sample > (finally,> > > they'd tried the day before, but couldn't find any!). I spoke at> > length> > > with a psycologist. She is sending me some information in the post> > that> > > she thinks will be useful. Please remember to be honest when > talking> > > about anxiety issues. They EXPECT you have some anxiety in the > run up> > > to the tx and would be concerned if you weren't. I was visited > by the> > > ward doctors and the dedicated tx nurse all together where they> > > discussed my results so far, they would tell you at this point > if they> > > had found anything that needed to be addressed. Finally I was> > visited> > > by a tx consultant, who discussed everything else that was on his> > list,> > > which was really making sure that I am aware of what I am in for.> > > > At all times they were prepared to answer any questions, and no> > > question was considered silly or unnecessary. I was given the times> > > for any trips off the wards for tests. It felt quite relaxed. I> > > thought I would be shunted around the hospital a lot more than I > was,> > > but I was given plenty of time to rest and relax. The only minor> > issue> > > was that they told me everything that I was due to see, then some> > things> > > were cancelled as they then decided that I didn't need that > particular> > > test, eg, I was told a dentist was coming to see me, but as i have> > > regular check ups (every 6mths) it wasn't necessary.> > > > I have asked for advice on how to help my daughter through all > this> > > and they are going to contact a post tx patient who was in a > similar> > > position to me with a young child, and ask if she is prepared to > talk> > to> > > me.> > > > I received lots of encouragement for the weightloss so far, which> > was> > > nice.> > > > I have been told that so far everything looks good to proceed,> > > although they didn't have all the results back yet. I will probably> > be> > > looking at a double lung tx. I have antibodies which can make> > matching> > > a donor a little more difficult, but apparently my frame (quite > large> > > for a girl) is in my favour. So it's swings and round abouts in the> > > donor lottery. I will get the definite answer thursday evening.> > > > I've left the hospital feeling a lot more confident about my> > decision> > > and more motivated in general, which can only be good.> > > > Love Ze xx> > > >> > >> >>

[Guest guest]

Z

I'm sure Peggy even thinks of her husband as a little one she loves

and I can assure you is far from little.

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > > Hi, I'm back, I thought I'd write down what happened and what

> was

> > > > talked about etc.

> > > > > Now my evaluation was slightly different as normally I would

> > still

> > > be

> > > > in on the thursday while my case would be discussed and then

> > would get

> > > > the answer in the afternoon, but the full team isn't there

> > today, so

> > > my

> > > > case is going to be discussed NEXT thursday.

> > > > > So on monday morning we trailed up to the Harefield Hospital.

> > I was

> > > > given a private room and have been assured that private rooms

> > are the

> > > > norm on a transplant ward. They immediately started a 24 hr

urine

> > > > collection, (I had to pee in a bed pan that was on the loo and

> > tip it

> > > > into the collection bottle, not as hard as it originallly

looked,

> I

> > > > didn't encounter any spillage). Then I had a 12 point ecg, and

> then

> > > > attached to a 24hour 'tape'. They attach 3 wires to you, 2 on

the

> > > lower

> > > > part of the chest to the side and one on the upper chest and you

> > are

> > > > given a mini ecg machine, which is about the size of a

> > blackberry. It

> > > > has a clip so you can attach it to your waistband and forget

> > about it.

> > > > They took 15 tubes of blood and sent me down for my lfts. A

doctor

> > > came

> > > > and checked me out generally in the normal way that any doc will

> > do on

> > > > admission to a ward. A dedicated Tx Nurse took my medical

history,

> > > > occasionally asking unexpected questions where

> > > > > we determined that I do NOT suffer with erectile disfunction!

> > Phew!

> > > I

> > > > was given a patient information booklet, which is mine to keep,

> and

> > > lots

> > > > of forms to fill in, including a psycological one. (It gives you

a

> > > > range of 'feelings' and gives you a scale on how often you might

> > have

> > > > those feelings). I was told to be nil-by-mouth from midnight so

> > that

> > > I

> > > > can have a fasting blood test in the morning.

> > > > > Day 2 and I was woken at 6am so a nurse could take my fasting

> > bloods

> > > > and I didn't have to miss out on or wait for a cup of tea or

> > > breakfast,

> > > > which I thought was quite nice (if anyone remembers my trial of

> NBM

> > > when

> > > > I was waiting of my angio will know that I don't manage NBM all

> > that

> > > > well ) I had a CT scan, a bone scan and another scan that used

> > dye (so

> > > I

> > > > had a cannula inserted in the ward ready) All these scans were

> done

> > > in

> > > > the same place and with the same machine so that I didn't have

to

> > > move.

> > > > The dye is weird, you get a very hot feeling, a very strange

> > metallic

> > > > taste in your mouth and finally a warmth around your groin that

> > gives

> > > > you the sensation of incontinence, but don't worry, it's only

the

> > > > sensation, you don't haven't actually wee'd. Also at some point

> > they

> > > > came and sprayed something under my tongue that is to dilate the

> > blood

> > > > vessals in the heart. They will take your heart rate before you

> > go in

> > > > and may decide to administer beta-blockers

> > > > > if they need to slow your heart rate down (if it's resting

> > rate is

> > > > above 70) in order to get a clearer picture. Once the 24 hour

> urine

> > > > collection is over they then want a urine sample. I also went

down

> > > for

> > > > the 6 MWT.

> > > > > Day 3 brought an echo, chest xray, arterial blood sample

> > (finally,

> > > > they'd tried the day before, but couldn't find any!). I spoke at

> > > length

> > > > with a psycologist. She is sending me some information in the

post

> > > that

> > > > she thinks will be useful. Please remember to be honest when

> > talking

> > > > about anxiety issues. They EXPECT you have some anxiety in the

> > run up

> > > > to the tx and would be concerned if you weren't. I was visited

> > by the

> > > > ward doctors and the dedicated tx nurse all together where they

> > > > discussed my results so far, they would tell you at this point

> > if they

> > > > had found anything that needed to be addressed. Finally I was

> > > visited

> > > > by a tx consultant, who discussed everything else that was on

his

> > > list,

> > > > which was really making sure that I am aware of what I am in

for.

> > > > > At all times they were prepared to answer any questions, and

no

> > > > question was considered silly or unnecessary. I was given the

> times

> > > > for any trips off the wards for tests. It felt quite relaxed. I

> > > > thought I would be shunted around the hospital a lot more than I

> > was,

> > > > but I was given plenty of time to rest and relax. The only minor

> > > issue

> > > > was that they told me everything that I was due to see, then

some

> > > things

> > > > were cancelled as they then decided that I didn't need that

> > particular

> > > > test, eg, I was told a dentist was coming to see me, but as i

have

> > > > regular check ups (every 6mths) it wasn't necessary.

> > > > > I have asked for advice on how to help my daughter through all

> > this

> > > > and they are going to contact a post tx patient who was in a

> > similar

> > > > position to me with a young child, and ask if she is prepared to

> > talk

> > > to

> > > > me.

> > > > > I received lots of encouragement for the weightloss so far,

> which

> > > was

> > > > nice.

> > > > > I have been told that so far everything looks good to proceed,

> > > > although they didn't have all the results back yet. I will

> probably

> > > be

> > > > looking at a double lung tx. I have antibodies which can make

> > > matching

> > > > a donor a little more difficult, but apparently my frame (quite

> > large

> > > > for a girl) is in my favour. So it's swings and round abouts in

> the

> > > > donor lottery. I will get the definite answer thursday evening.

> > > > > I've left the hospital feeling a lot more confident about my

> > > decision

> > > > and more motivated in general, which can only be good.

> > > > > Love Ze xx

> > > > >

> > > >

> > >

> >

>