Re: My transplant evaluation

[Guest guest]

Hello. I am praying for you. Good Luck. I too have just recently went through the evaluation. Mine was done in 1 day as out patient. The result was slightly disappointing. My BMI is 33% and it needs to be between 10 and 30%. So I need to lose 10 - 15 lbs. I also need to wean off of the prednisone more. But I am very lucky because those things are very doable.

I was wondering, How old is your daughter ? My son is 6 and my daughter is 7 months old. I am also struggling with the issue with my son. He has started seeing a counsler at school and is doing outside activities to keep him busy (swim lessons). He wants me to have the surgery but he is so scared about it. He gets sad at night and when I ask him whats wrong he starts crying and says he doesnt want me to die. What do I Say?

Always In my prayers,

Miranda

Los Angeles / 28yrs old / IPF 05

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]

My daughter, Lili, is 6. She often asks the 'are you going to die' question, which so far I have fended off with 'everyone dies' I'm going to see what the outcome is next thursday and ask for a meeting with the head to discuss what is happening with me, so they can make allowances and hopefully offer any advice that they may have. It's a very small school so I don't think a counsellor will be offered. I feel very sad that she doesn't have the mummy that other kids have. I carry a lot of guilt about that too, and don't really know how to deal with that.

I try to keep my daughter up to date using appropriate language. She will come with me to various appointments and we make a point of letting her visit me in hospital even if it means a day off of school. I hope that I'm showing her that I'm not worried, so she needn't be. I have a good pop up book on the general working of the body, which I have read with Lili and she has some understanding of how things are meant to work and what's going wrong with mummy.

At the moment she thinks that everytime I go into hospital, even if it's over night, I'm being given my new lungs! I think we've got through to her that I'm waiting to find out if I'm allowed, but she does seem to think that it's a given that I'll get new lungs. I haven't explained how we get donors.

Love Ze xx> > > > > > > > > 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]

My daughter, Lili, is 6. She often asks the 'are you going to die' question, which so far I have fended off with 'everyone dies' I'm going to see what the outcome is next thursday and ask for a meeting with the head to discuss what is happening with me, so they can make allowances and hopefully offer any advice that they may have. It's a very small school so I don't think a counsellor will be offered. I feel very sad that she doesn't have the mummy that other kids have. I carry a lot of guilt about that too, and don't really know how to deal with that.

I try to keep my daughter up to date using appropriate language. She will come with me to various appointments and we make a point of letting her visit me in hospital even if it means a day off of school. I hope that I'm showing her that I'm not worried, so she needn't be. I have a good pop up book on the general working of the body, which I have read with Lili and she has some understanding of how things are meant to work and what's going wrong with mummy.

At the moment she thinks that everytime I go into hospital, even if it's over night, I'm being given my new lungs! I think we've got through to her that I'm waiting to find out if I'm allowed, but she does seem to think that it's a given that I'll get new lungs. I haven't explained how we get donors.

Love Ze xx> > > > > > > > > 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]

My daughter, Lili, is 6. She often asks the 'are you going to die' question, which so far I have fended off with 'everyone dies' I'm going to see what the outcome is next thursday and ask for a meeting with the head to discuss what is happening with me, so they can make allowances and hopefully offer any advice that they may have. It's a very small school so I don't think a counsellor will be offered. I feel very sad that she doesn't have the mummy that other kids have. I carry a lot of guilt about that too, and don't really know how to deal with that.

I try to keep my daughter up to date using appropriate language. She will come with me to various appointments and we make a point of letting her visit me in hospital even if it means a day off of school. I hope that I'm showing her that I'm not worried, so she needn't be. I have a good pop up book on the general working of the body, which I have read with Lili and she has some understanding of how things are meant to work and what's going wrong with mummy.

At the moment she thinks that everytime I go into hospital, even if it's over night, I'm being given my new lungs! I think we've got through to her that I'm waiting to find out if I'm allowed, but she does seem to think that it's a given that I'll get new lungs. I haven't explained how we get donors.

Love Ze xx> > > > > > > > > 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>