Re: Re: My transplant evaluation

[Guest guest]

Bruce.... you are becoming more tender hearted with each passing year! I think this reply to Ze was very touching...

ZE....go get quiet someplace and take a good look inside yourself...the core of what you believe. You already have spiritual beliefs about death. When you know for certain what you feel (sometimes we learn this by what we DON'T think) and when you are very certain YOU have come to terms with your own mortality and transition, THEN you will know what to talk to Lili about and what to say to her. She may be only 6 but she will never forget the words you are going to say to her....

If you cannot speak w/confidence she won't hear w/confidence. Don't overload her...

I have little grkids and they are learning lessons about death because of this disease too.

You are the best person to talk w/Lili.

It's not easy but you can do it. I know you can; because you are a mother...

MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

Re: My transplant evaluation

ZenaYou might well want to find a counselor for you and Lili to see and havethese discussions with. While you don't want her thinking constantlyyou're going to die, don't underestimate her ability to pick up onthings and understand and handle more than you might think. If sheoverhears something that tells her you're not sharing the truth with herthen she'll not trust even when you have positive news.As to the comment about not having the mummy other kids have if I couldreach you right now, I'd kick your.....(you can fill in the blank). No,she doesn't. Many kids don't have a mummy who loves them as much as youdo her. Many kids have mummy's who beat them or who verbally andemotionally abuse them. Many kids have mummy's addicted to drugs oralcohol. Many kids have mummys too busy to give them any time andleaving them with others or alone. Don't ever short change yourself onwhat you give to her. Even through the disease and transplantconsideration she's being taught. She may be taught some things you wishshe didn't have to learn so early, but she's learning things througheach step as well. She learns about miracles, medical and otherwise. Shewill learn about donors and the nature of the beauty in the worstmoments. She'll learn to value life in ways many of us never do.Hopefully she'll have you for a very long time, but either way shereally has the kind of mother every kid needs and deserves and so manydon't have.> >> >> >> >> >> >> >> >> > 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 stillbe> 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, somy> 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 thelower> 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 doctorcame> 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, andlots> 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 thatI> 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 orbreakfast,> which I thought was quite nice (if anyone remembers my trial of NBMwhen> 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 (soI> had a cannula inserted in the ward ready) All these scans were donein> the same place and with the same machine so that I didn't have tomove.> 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 downfor> 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 atlength> with a psycologist. She is sending me some information in the postthat> 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 wasvisited> by a tx consultant, who discussed everything else that was on hislist,> 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 minorissue> was that they told me everything that I was due to see, then somethings> 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 talkto> me.> > I received lots of encouragement for the weightloss so far, whichwas> 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 probablybe> looking at a double lung tx. I have antibodies which can makematching> 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 mydecision> and more motivated in general, which can only be good.> > Love Ze xx> >>