Guest guest Posted January 29, 2008 Report Share Posted January 29, 2008 Ze, the best of luck to you in all of this. I know it seems like so much to take in right now. Hard to remember all the details and what was said exactly. Your head must be in a spin.... So, this is good news, yes? And we will all be cheering for you every step of the way. Just know that while you're in the hospital, we're all there with you in spirit and will be keeping you in our prayers. As you can, keep us updated on the tests and such. With so much love, and big hugs! Babs in Texas > > > I saw my Chest Physician yesterday. My pft's are pretty much the same > as last time. We were talking about transplant and as you may know it's > a route that I have decided is right for me if I can. > > Here what will happen is I go to my docs hospital for some basic tests, > bloods, pfts, ct scan, bone scan, xrays, that sort of thing, nothing > invasive at the moment. Then the results are sent to the hospital that > will be performing the transplant, (The Harefield Hospital in Middx) > They will decide if I'm viable to go further and if they think so I will > go to that hospital for more tests, some of which will be more invasive. > I know they'll will do a heart cath but I can't remember what other ones > she said. They then collate all the information and the entire > transplant team will make a decision. If they say yes then I will go > straight on the list and be told to go home and pack. > > I'm now waiting for a bed! My doc is trying to get me in next week. > Eeeeeeeeeeeeeek! > > With the way the NHS works I was expecting to be waiting somewhat longer > than that! > > At least this time I'll be prepared for a hospital stay and can organise > things to do. I'm also going to treat myself to some new pj's and work > out how to make the hospital food palatable! I'll take some seasonings > and salads with me [] > > So I'm a bit excited and a bit daunted at the mo. I'm still struggling > with getting to grips with the fact that my pf has nose dived to this > extent and it's all happening faster than I expected. I do realise that > the quicker I'm on the list the better, but I could do with some time > out to gather my thoughts if you get what I mean. > > Anyway, that's where I am right now, I don't know how much notice I'll > get for this hospital stay, so if I'm not on line for a few days that's > probably why. > > Love Ze xx > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2008 Report Share Posted January 29, 2008 Oh I am excited and scared for you all in the same sense. I will be praying for you and hoping everything goes so smooth. I so hope there are no road blocks and I so hope things come out for the good! Sending you my thoughts! Take care of yourself and remember to ask when you dont know so your not in the dark! Sandie > > > I saw my Chest Physician yesterday. My pft's are pretty much the same > as last time. We were talking about transplant and as you may know it's > a route that I have decided is right for me if I can. > > Here what will happen is I go to my docs hospital for some basic tests, > bloods, pfts, ct scan, bone scan, xrays, that sort of thing, nothing > invasive at the moment. Then the results are sent to the hospital that > will be performing the transplant, (The Harefield Hospital in Middx) > They will decide if I'm viable to go further and if they think so I will > go to that hospital for more tests, some of which will be more invasive. > I know they'll will do a heart cath but I can't remember what other ones > she said. They then collate all the information and the entire > transplant team will make a decision. If they say yes then I will go > straight on the list and be told to go home and pack. > > I'm now waiting for a bed! My doc is trying to get me in next week. > Eeeeeeeeeeeeeek! > > With the way the NHS works I was expecting to be waiting somewhat longer > than that! > > At least this time I'll be prepared for a hospital stay and can organise > things to do. I'm also going to treat myself to some new pj's and work > out how to make the hospital food palatable! I'll take some seasonings > and salads with me [] > > So I'm a bit excited and a bit daunted at the mo. I'm still struggling > with getting to grips with the fact that my pf has nose dived to this > extent and it's all happening faster than I expected. I do realise that > the quicker I'm on the list the better, but I could do with some time > out to gather my thoughts if you get what I mean. > > Anyway, that's where I am right now, I don't know how much notice I'll > get for this hospital stay, so if I'm not on line for a few days that's > probably why. > > Love Ze xx > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2008 Report Share Posted January 29, 2008 Zena, Wow, you are moving ahead! I'm happy for you, just take it one step at a time and know that you have your own personal cheering section here. Many hugs, Beth in NC age 48 Fibrotic NSIP 06/06 "For as long as I shall live, I will testify to Love." Transplant evaluation I saw my Chest Physician yesterday. My pft's are pretty much the same as last time. We were talking about transplant and as you may know it's a route that I have decided is right for me if I can. Here what will happen is I go to my docs hospital for some basic tests, bloods, pfts, ct scan, bone scan, xrays, that sort of thing, nothing invasive at the moment. Then the results are sent to the hospital that will be performing the transplant, (The Harefield Hospital in Middx) They will decide if I'm viable to go further and if they think so I will go to that hospital for more tests, some of which will be more invasive. I know they'll will do a heart cath but I can't remember what other ones she said. They then collate all the information and the entire transplant team will make a decision. If they say yes then I will go straight on the list and be told to go home and pack. I'm now waiting for a bed! My doc is trying to get me in next week. Eeeeeeeeeeeeeek! With the way the NHS works I was expecting to be waiting somewhat longer than that! At least this time I'll be prepared for a hospital stay and can organise things to do. I'm also going to treat myself to some new pj's and work out how to make the hospital food palatable! I'll take some seasonings and salads with me So I'm a bit excited and a bit daunted at the mo. I'm still struggling with getting to grips with the fact that my pf has nose dived to this extent and it's all happening faster than I expected. I do realise that the quicker I'm on the list the better, but I could do with some time out to gather my thoughts if you get what I mean. Anyway, that's where I am right now, I don't know how much notice I'll get for this hospital stay, so if I'm not on line for a few days that's probably why. Love Ze xx Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2008 Report Share Posted January 29, 2008 Thanks guys I'm trying not to get overly optimistic because they can still say no, but I'm not being pessimistic either, (I hope) Not a case of glass half full or half empty, more a case of how big is the glass and what's in it! >> Zena,> Wow, you are moving ahead! I'm happy for you, just take it one step at a time and know that you have your own personal cheering section here.> Many hugs,> > Beth in NC age 48 Fibrotic NSIP 06/06> > "For as long as I shall live, I will testify to Love."> > > > > > Transplant evaluation> > I saw my Chest Physician yesterday. My pft's are pretty much the same as last time. We were talking about transplant and as you may know it's a route that I have decided is right for me if I can. > Here what will happen is I go to my docs hospital for some basic tests, bloods, pfts, ct scan, bone scan, xrays, that sort of thing, nothing invasive at the moment. Then the results are sent to the hospital that will be performing the transplant, (The Harefield Hospital in Middx) They will decide if I'm viable to go further and if they think so I will go to that hospital for more tests, some of which will be more invasive. I know they'll will do a heart cath but I can't remember what other ones she said. They then collate all the information and the entire transplant team will make a decision. If they say yes then I will go straight on the list and be told to go home and pack.> I'm now waiting for a bed! My doc is trying to get me in next week. Eeeeeeeeeeeeeek!> With the way the NHS works I was expecting to be waiting somewhat longer than that!> At least this time I'll be prepared for a hospital stay and can organise things to do. I'm also going to treat myself to some new pj's and work out how to make the hospital food palatable! I'll take some seasonings and salads with me > So I'm a bit excited and a bit daunted at the mo. I'm still struggling with getting to grips with the fact that my pf has nose dived to this extent and it's all happening faster than I expected. I do realise that the quicker I'm on the list the better, but I could do with some time out to gather my thoughts if you get what I mean.> Anyway, that's where I am right now, I don't know how much notice I'll get for this hospital stay, so if I'm not on line for a few days that's probably why.> Love Ze xx> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2008 Report Share Posted January 29, 2008 Zena, How exciting! I will be praying that all goes well. Sarcoid/PF 3/2006 California Transplant evaluation I saw my Chest Physician yesterday. My pft's are pretty much the same as last time. We were talking about transplant and as you may know it's a route that I have decided is right for me if I can. Here what will happen is I go to my docs hospital for some basic tests, bloods, pfts, ct scan, bone scan, xrays, that sort of thing, nothing invasive at the moment. Then the results are sent to the hospital that will be performing the transplant, (The Harefield Hospital in Middx) They will decide if I'm viable to go further and if they think so I will go to that hospital for more tests, some of which will be more invasive. I know they'll will do a heart cath but I can't remember what other ones she said. They then collate all the information and the entire transplant team will make a decision. If they say yes then I will go straight on the list and be told to go home and pack. I'm now waiting for a bed! My doc is trying to get me in next week. Eeeeeeeeeeeeeek! With the way the NHS works I was expecting to be waiting somewhat longer than that! At least this time I'll be prepared for a hospital stay and can organise things to do. I'm also going to treat myself to some new pj's and work out how to make the hospital food palatable! I'll take some seasonings and salads with me So I'm a bit excited and a bit daunted at the mo. I'm still struggling with getting to grips with the fact that my pf has nose dived to this extent and it's all happening faster than I expected. I do realise that the quicker I'm on the list the better, but I could do with some time out to gather my thoughts if you get what I mean. Anyway, that's where I am right now, I don't know how much notice I'll get for this hospital stay, so if I'm not on line for a few days that's probably why. Love Ze xx Looking for last minute shopping deals? Find them fast with Yahoo! Search. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2008 Report Share Posted January 29, 2008 Ok Ze it's time for the Warrior Princess to 'do her stuff' ....all your troops from across the pond & in the antipodes are ready willing & able to support you with everything in their personal armoury (prayer, postive energy, fresh antipodean breezes, meditation etc etc!) Catch your breath quick girl, your on your way.......take care & know that we love you, in Oz >> > I saw my Chest Physician yesterday. My pft's are pretty much the same> as last time. We were talking about transplant and as you may know it's> a route that I have decided is right for me if I can.> > Here what will happen is I go to my docs hospital for some basic tests,> bloods, pfts, ct scan, bone scan, xrays, that sort of thing, nothing> invasive at the moment. Then the results are sent to the hospital that> will be performing the transplant, (The Harefield Hospital in Middx) > They will decide if I'm viable to go further and if they think so I will> go to that hospital for more tests, some of which will be more invasive.> I know they'll will do a heart cath but I can't remember what other ones> she said. They then collate all the information and the entire> transplant team will make a decision. If they say yes then I will go> straight on the list and be told to go home and pack.> > I'm now waiting for a bed! My doc is trying to get me in next week. > Eeeeeeeeeeeeeek!> > With the way the NHS works I was expecting to be waiting somewhat longer> than that!> > At least this time I'll be prepared for a hospital stay and can organise> things to do. I'm also going to treat myself to some new pj's and work> out how to make the hospital food palatable! I'll take some seasonings> and salads with me []> > So I'm a bit excited and a bit daunted at the mo. I'm still struggling> with getting to grips with the fact that my pf has nose dived to this> extent and it's all happening faster than I expected. I do realise that> the quicker I'm on the list the better, but I could do with some time> out to gather my thoughts if you get what I mean.> > Anyway, that's where I am right now, I don't know how much notice I'll> get for this hospital stay, so if I'm not on line for a few days that's> probably why.> > Love Ze xx> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2008 Report Share Posted January 29, 2008 Hi Ze: Here's my story on pre-transplant evaluation. I was first seen at the Cleveland Clinic three months after my biopsy confirmation of IPF. That was the soonest I could get in. On my very first visit, I was directed for all of the pre-transplant blood work, HRCT, Chest X- ray, and scheduled for a sleep study. I also did a 6 min. walk test, and full PFT that day. I was there the entire day. I met with the transplant doctor and coordinator. I was given a full notebook of information relative to transplant including pre-transplant, surgery and post-transplant medications. I was told to extensively study the post-transplant medications when I left, which I did. I was also told that I would be contacted by the transplant coordinator to schedule my next appointment. I left there feeling wonderful! I was so hopeful that the 29 tubes of blood that they took that day would get me somewhere! Anyway, what happened was sad. I never received a call. Not one call. I finally called the coordinator, who said, and I quote, " Have you lost weight yet? Because if you're not under 30 BMI we won't even consider you for transplant. Call us back when you have lost all the weight you need to lose, I think 85 pounds, right? " I said, " No, it's more like 50, but who's counting? " I was so mad that no one called me or even mentioned this at my first meeting. And, why in the world did they make me go through all the pre-transplant testing that day if they knew I would not be a candidate until I lost all the weight I needed to lose. In any event, I was depressed. I felt the least they could do was incorporate their expertise to lead me to a dietician, or somewhere to help me lose the weight. That just didn't happen. What I did next is unheard of in this area. I picked up the phone and called the University of Pittsburgh Medical Center, Center for Interstitial Lung Disease, and self-referred myself. My appointment was scheduled for August 24th. I hated waiting that long, but I had to. On that day I was seen by the pulmonologist, who called in the transplant doctor. He told me he wanted me to get on the transplant list ASAP. That day I did another 6 min. walk test, a new PFT and HRCT. They also asked me to sign Releases to get all of my records from Cleveland Clinic so that some of my tests wouldn't have to be performed a second time. Four weeks later I was scheduled for a full week of testing. Each day I had an intinerary to follow which told me where to be in within a four block area of Pittsburgh, each different facility of the UPMC, and which tests would be performed. I had the following tests: HRCT, blood work, bone density scan, VQ Scan, 6 min. walk test, oxygen desaturation test, PFT (done in an enclosed aero-dome), and a right and left heart cath. I did not have to have a colonoscopy because I was under 50 yr. old. The 5 day testing also included a 1/2 day meeting with the pre- transplant coordinators and other patients undergoing evaluation, a meeting with the transplant surgeon who would be performing the transplant, a meeting with a Behavioral Health person to discuss my pyschiatric evaluation, and a meeting with a Financial Consultant to prepare for the expenses associated with transplant and post- transplant. I was also given a tour of the transplant section of the hospital and was free to talk to patients who had undergone transplant that week! There were two in the hospital while I was there. It was a moving and emotionally draining experience. When I left Pittsburgh that Friday I was told the results would be in the hands of the coordinator that day for all of the tests I had performed! The Transplant team meets every Tuesday to discuss the potential transplant candidates. From there,, they decide who is ready to be put on the waiting list, who is not going to be a transplant candidate and who may need to accomplish other things before being put on the list. In my case, I was telephoned on Tuesday and advised they wanted to see me again in three months and they wanted to see me lose some weight. They wanted to make sure I was committed to the program in order to be a transplant candidate. The doctor even said to just try to lose 20 pounds, then I willl know you are serious and put you on the list. Unfortunately, things didn't go all as planned either. My right heart cath. revealed Pulmonary Hypertention which just complicates matters, but doesn't necessarily eliminate me from being a transplant candidate. But then, even worse, my antigen count had to be sent to a hematologist to be screened further. In this test they would identify each and every antigen present in my blood, to see if any could be ruled out. My antigen count is at 64% and that is extremely high. What that meant is that there would be very few people in the entire population who would be a donor match to my antigens. But, hope is not lost. I may still be put on the waiting list, who knows? I continue to battle losing weight. The steroid effect on me was horrible and losing the weight is very hard. But I have lost 20 pounds and I am working on losing another 30, to be healthier, if nothing else. I go back to see the transplant doctor in February. I will have to do another 6 min. walk test, HRCT and PFT. I hope my information hasn't frightened you. It is just a very long process and decisions are made very slowly. I do understand, and I have learned to cope with my anxiety. Good luck to you and let me know how everything works out for you. God Bless, Tina IPF 04/07 PH 11/07 Ohio > > > I saw my Chest Physician yesterday. My pft's are pretty much the same > as last time. We were talking about transplant and as you may know it's > a route that I have decided is right for me if I can. > > Here what will happen is I go to my docs hospital for some basic tests, > bloods, pfts, ct scan, bone scan, xrays, that sort of thing, nothing > invasive at the moment. Then the results are sent to the hospital that > will be performing the transplant, (The Harefield Hospital in Middx) > They will decide if I'm viable to go further and if they think so I will > go to that hospital for more tests, some of which will be more invasive. > I know they'll will do a heart cath but I can't remember what other ones > she said. They then collate all the information and the entire > transplant team will make a decision. If they say yes then I will go > straight on the list and be told to go home and pack. > > I'm now waiting for a bed! My doc is trying to get me in next week. > Eeeeeeeeeeeeeek! > > With the way the NHS works I was expecting to be waiting somewhat longer > than that! > > At least this time I'll be prepared for a hospital stay and can organise > things to do. I'm also going to treat myself to some new pj's and work > out how to make the hospital food palatable! I'll take some seasonings > and salads with me [] > > So I'm a bit excited and a bit daunted at the mo. I'm still struggling > with getting to grips with the fact that my pf has nose dived to this > extent and it's all happening faster than I expected. I do realise that > the quicker I'm on the list the better, but I could do with some time > out to gather my thoughts if you get what I mean. > > Anyway, that's where I am right now, I don't know how much notice I'll > get for this hospital stay, so if I'm not on line for a few days that's > probably why. > > Love Ze xx > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2008 Report Share Posted January 30, 2008 I have treated myself to some new PJ's today All ready for me to take with me! I'm also doing a tapestry at home and I'm going to take it off of the large frame that it's on and put it on a much smaller frame so I've got something to do between tests. I know I'm only going to be in for a little while, but Rob might not be able to get over to see me as he'll be looking after Lili and she'll be at school. Love Ze xx > >> >> > I saw my Chest Physician yesterday. My pft's are pretty much the same> > as last time. We were talking about transplant and as you may know> it's> > a route that I have decided is right for me if I can.> >> > Here what will happen is I go to my docs hospital for some basic> tests,> > bloods, pfts, ct scan, bone scan, xrays, that sort of thing, nothing> > invasive at the moment. Then the results are sent to the hospital> that> > will be performing the transplant, (The Harefield Hospital in Middx)> > They will decide if I'm viable to go further and if they think so I> will> > go to that hospital for more tests, some of which will be more> invasive.> > I know they'll will do a heart cath but I can't remember what other> ones> > she said. They then collate all the information and the entire> > transplant team will make a decision. If they say yes then I will go> > straight on the list and be told to go home and pack.> >> > I'm now waiting for a bed! My doc is trying to get me in next week.> > Eeeeeeeeeeeeeek!> >> > With the way the NHS works I was expecting to be waiting somewhat> longer> > than that!> >> > At least this time I'll be prepared for a hospital stay and can> organise> > things to do. I'm also going to treat myself to some new pj's and> work> > out how to make the hospital food palatable! I'll take some> seasonings> > and salads with me []> >> > So I'm a bit excited and a bit daunted at the mo. I'm still> struggling> > with getting to grips with the fact that my pf has nose dived to this> > extent and it's all happening faster than I expected. I do realise> that> > the quicker I'm on the list the better, but I could do with some time> > out to gather my thoughts if you get what I mean.> >> > Anyway, that's where I am right now, I don't know how much notice I'll> > get for this hospital stay, so if I'm not on line for a few days> that's> > probably why.> >> > Love Ze xx> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2008 Report Share Posted January 30, 2008 Hi Tina, Thankyou for sharing, and no you haven't frightened me. I asked my doc whether my weight would be an issue as I am overweight, but she said not. She's the area expert for cystic fibrosis so she deals with transplant patients quite a lot. She thinks it's more important that I remain stable and not gain anymore rather than yo-yo up and down. I find it quite amusing that my docs are concerned about how I'll cope with being on meds afterwards if I have a transplant. I'm on meds for the rest of my life anyway! I've been told that if I go through to the second set of tests I'll get to meet post-transplant patients at different stages. I've also been told already that I'll be asked if I will be prepared to talk to people in my position if I have one. I'm trying to be pragmatic as I'm aware that they can still say no. I'm trying to take the view that if they do say no, then at least I'll know, and I can go on from there. If they say yes, then I'll still have to cope with the limbo of waiting! That, at the moment, feels a bit more daunting.> >> > > > I saw my Chest Physician yesterday. My pft's are pretty much the > same> > as last time. We were talking about transplant and as you may know > it's> > a route that I have decided is right for me if I can.> > > > Here what will happen is I go to my docs hospital for some basic > tests,> > bloods, pfts, ct scan, bone scan, xrays, that sort of thing, nothing> > invasive at the moment. Then the results are sent to the hospital > that> > will be performing the transplant, (The Harefield Hospital in > Middx) > > They will decide if I'm viable to go further and if they think so I > will> > go to that hospital for more tests, some of which will be more > invasive.> > I know they'll will do a heart cath but I can't remember what other > ones> > she said. They then collate all the information and the entire> > transplant team will make a decision. If they say yes then I will > go> > straight on the list and be told to go home and pack.> > > > I'm now waiting for a bed! My doc is trying to get me in next > week. > > Eeeeeeeeeeeeeek!> > > > With the way the NHS works I was expecting to be waiting somewhat > longer> > than that!> > > > At least this time I'll be prepared for a hospital stay and can > organise> > things to do. I'm also going to treat myself to some new pj's and > work> > out how to make the hospital food palatable! I'll take some > seasonings> > and salads with me []> > > > So I'm a bit excited and a bit daunted at the mo. I'm still > struggling> > with getting to grips with the fact that my pf has nose dived to > this> > extent and it's all happening faster than I expected. I do realise > that> > the quicker I'm on the list the better, but I could do with some > time> > out to gather my thoughts if you get what I mean.> > > > Anyway, that's where I am right now, I don't know how much notice > I'll> > get for this hospital stay, so if I'm not on line for a few days > that's> > probably why.> > > > Love Ze xx> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2008 Report Share Posted January 30, 2008 Ze cant Lilli come to the hospital to see you? Gosh I cant imagine having to be in the hospital and not have my spouse there with me. Can you have a friend or anyone go with you? Thats all scary to go by yourself so much information to suck in during a short time. I will give extra prayers that the guardian angel is walking with you and gives you the strength to get through all that you must go through! You sure are brave! Sandie > > > > > > > > > I saw my Chest Physician yesterday. My pft's are pretty much the > same > > > as last time. We were talking about transplant and as you may know > > it's > > > a route that I have decided is right for me if I can. > > > > > > Here what will happen is I go to my docs hospital for some basic > > tests, > > > bloods, pfts, ct scan, bone scan, xrays, that sort of thing, nothing > > > invasive at the moment. Then the results are sent to the hospital > > that > > > will be performing the transplant, (The Harefield Hospital in Middx) > > > They will decide if I'm viable to go further and if they think so I > > will > > > go to that hospital for more tests, some of which will be more > > invasive. > > > I know they'll will do a heart cath but I can't remember what other > > ones > > > she said. They then collate all the information and the entire > > > transplant team will make a decision. If they say yes then I will go > > > straight on the list and be told to go home and pack. > > > > > > I'm now waiting for a bed! My doc is trying to get me in next week. > > > Eeeeeeeeeeeeeek! > > > > > > With the way the NHS works I was expecting to be waiting somewhat > > longer > > > than that! > > > > > > At least this time I'll be prepared for a hospital stay and can > > organise > > > things to do. I'm also going to treat myself to some new pj's and > > work > > > out how to make the hospital food palatable! I'll take some > > seasonings > > > and salads with me [] > > > > > > So I'm a bit excited and a bit daunted at the mo. I'm still > > struggling > > > with getting to grips with the fact that my pf has nose dived to > this > > > extent and it's all happening faster than I expected. I do realise > > that > > > the quicker I'm on the list the better, but I could do with some > time > > > out to gather my thoughts if you get what I mean. > > > > > > Anyway, that's where I am right now, I don't know how much notice > I'll > > > get for this hospital stay, so if I'm not on line for a few days > > that's > > > probably why. > > > > > > Love Ze xx > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2008 Report Share Posted January 30, 2008 It'll be difficult for Rob to come over to the hospital with Lili as she'll be at school, she finishes at 3.15, then it takes at least an hour to get from her school to the hospital. By the time they get there it'll be time for Rob to be thinking about leaving to get Lili home, fed, etc and in bed on time to get up the next day. If it's the half term holiday it won't be a problem. Also, if I'm back on the resparitory ward, then Lili isn't really supposed to be in the ward as there are so many infections knocking about in there. A couple of friends might pop up if they get a chance, but that will be work permitting. The trouble is it's an old victorian hospital in a residential area which is also victorian. Before cars in other words. So there's hardly any parking. The station is just over a mile away and it isn't the nicest area to walk through once it's dark. I don't mind if I know that I won't get many visitors, I can arrange for other things to do. Last time I was there I made Lili a stuffed toy fox! It's when I'm expecting visitors and no one turns up that I find it hard. Love Ze xx > > > >> > > >> > > > I saw my Chest Physician yesterday. My pft's are pretty much the> > same> > > > as last time. We were talking about transplant and as you may > know> > > it's> > > > a route that I have decided is right for me if I can.> > > >> > > > Here what will happen is I go to my docs hospital for some basic> > > tests,> > > > bloods, pfts, ct scan, bone scan, xrays, that sort of thing, > nothing> > > > invasive at the moment. Then the results are sent to the > hospital> > > that> > > > will be performing the transplant, (The Harefield Hospital in > Middx)> > > > They will decide if I'm viable to go further and if they think > so I> > > will> > > > go to that hospital for more tests, some of which will be more> > > invasive.> > > > I know they'll will do a heart cath but I can't remember what > other> > > ones> > > > she said. They then collate all the information and the entire> > > > transplant team will make a decision. If they say yes then I > will go> > > > straight on the list and be told to go home and pack.> > > >> > > > I'm now waiting for a bed! My doc is trying to get me in next > week.> > > > Eeeeeeeeeeeeeek!> > > >> > > > With the way the NHS works I was expecting to be waiting > somewhat> > > longer> > > > than that!> > > >> > > > At least this time I'll be prepared for a hospital stay and can> > > organise> > > > things to do. I'm also going to treat myself to some new pj's > and> > > work> > > > out how to make the hospital food palatable! I'll take some> > > seasonings> > > > and salads with me []> > > >> > > > So I'm a bit excited and a bit daunted at the mo. I'm still> > > struggling> > > > with getting to grips with the fact that my pf has nose dived to> > this> > > > extent and it's all happening faster than I expected. I do > realise> > > that> > > > the quicker I'm on the list the better, but I could do with some> > time> > > > out to gather my thoughts if you get what I mean.> > > >> > > > Anyway, that's where I am right now, I don't know how much > notice> > I'll> > > > get for this hospital stay, so if I'm not on line for a few days> > > that's> > > > probably why.> > > >> > > > Love Ze xx> > > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2008 Report Share Posted January 30, 2008 Ze - I still think your brave! Do you got an address there? If I send it now it might get there on time. You give me an address please Sandie > > > > > > > > > > > > > > > I saw my Chest Physician yesterday. My pft's are pretty much the > > > same > > > > > as last time. We were talking about transplant and as you may > > know > > > > it's > > > > > a route that I have decided is right for me if I can. > > > > > > > > > > Here what will happen is I go to my docs hospital for some basic > > > > tests, > > > > > bloods, pfts, ct scan, bone scan, xrays, that sort of thing, > > nothing > > > > > invasive at the moment. Then the results are sent to the > > hospital > > > > that > > > > > will be performing the transplant, (The Harefield Hospital in > > Middx) > > > > > They will decide if I'm viable to go further and if they think > > so I > > > > will > > > > > go to that hospital for more tests, some of which will be more > > > > invasive. > > > > > I know they'll will do a heart cath but I can't remember what > > other > > > > ones > > > > > she said. They then collate all the information and the entire > > > > > transplant team will make a decision. If they say yes then I > > will go > > > > > straight on the list and be told to go home and pack. > > > > > > > > > > I'm now waiting for a bed! My doc is trying to get me in next > > week. > > > > > Eeeeeeeeeeeeeek! > > > > > > > > > > With the way the NHS works I was expecting to be waiting > > somewhat > > > > longer > > > > > than that! > > > > > > > > > > At least this time I'll be prepared for a hospital stay and can > > > > organise > > > > > things to do. I'm also going to treat myself to some new pj's > > and > > > > work > > > > > out how to make the hospital food palatable! I'll take some > > > > seasonings > > > > > and salads with me [] > > > > > > > > > > So I'm a bit excited and a bit daunted at the mo. I'm still > > > > struggling > > > > > with getting to grips with the fact that my pf has nose dived to > > > this > > > > > extent and it's all happening faster than I expected. I do > > realise > > > > that > > > > > the quicker I'm on the list the better, but I could do with some > > > time > > > > > out to gather my thoughts if you get what I mean. > > > > > > > > > > Anyway, that's where I am right now, I don't know how much > > notice > > > I'll > > > > > get for this hospital stay, so if I'm not on line for a few days > > > > that's > > > > > probably why. > > > > > > > > > > Love Ze xx > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2008 Report Share Posted January 30, 2008 Good Luck with all your test Zena . We will be waiting to hear from you. I will say extra prayers that everything goes smoothly. IPF 2/07 IL --- Zena wrote: > > Hi Tina, > > Thankyou for sharing, and no you haven't frightened > me. I asked my doc > whether my weight would be an issue as I am > overweight, but she said > not. She's the area expert for cystic fibrosis so > she deals with > transplant patients quite a lot. She thinks it's > more important that I > remain stable and not gain anymore rather than yo-yo > up and down. I > find it quite amusing that my docs are concerned > about how I'll cope > with being on meds afterwards if I have a > transplant. I'm on meds for > the rest of my life anyway! > > I've been told that if I go through to the second > set of tests I'll get > to meet post-transplant patients at different > stages. I've also been > told already that I'll be asked if I will be > prepared to talk to people > in my position if I have one. > > I'm trying to be pragmatic as I'm aware that they > can still say no. > I'm trying to take the view that if they do say no, > then at least I'll > know, and I can go on from there. If they say yes, > then I'll still > have to cope with the limbo of waiting! That, at > the moment, feels a > bit more daunting. > > > > > Hi Ze: > > > > Here's my story on pre-transplant evaluation. I > was first seen at > > the Cleveland Clinic three months after my biopsy > confirmation of > > IPF. That was the soonest I could get in. On my > very first visit, I > > was directed for all of the pre-transplant blood > work, HRCT, Chest X- > > ray, and scheduled for a sleep study. I also did a > 6 min. walk test, > > and full PFT that day. I was there the entire day. > I met with the > > transplant doctor and coordinator. I was given a > full notebook of > > information relative to transplant including > pre-transplant, surgery > > and post-transplant medications. I was told to > extensively study the > > post-transplant medications when I left, which I > did. I was also > > told that I would be contacted by the transplant > coordinator to > > schedule my next appointment. I left there feeling > wonderful! I was > > so hopeful that the 29 tubes of blood that they > took that day would > > get me somewhere! Anyway, what happened was sad. I > never received a > > call. Not one call. I finally called the > coordinator, who said, and > > I quote, " Have you lost weight yet? Because if > you're not under 30 > > BMI we won't even consider you for transplant. > Call us back when you > > have lost all the weight you need to lose, I think > 85 pounds, > > right? " I said, " No, it's more like 50, but who's > counting? " I was > > so mad that no one called me or even mentioned > this at my first > > meeting. And, why in the world did they make me go > through all the > > pre-transplant testing that day if they knew I > would not be a > > candidate until I lost all the weight I needed to > lose. In any > > event, I was depressed. I felt the least they > could do was > > incorporate their expertise to lead me to a > dietician, or somewhere > > to help me lose the weight. That just didn't > happen. > > What I did next is unheard of in this area. I > picked up the phone > > and called the University of Pittsburgh Medical > Center, > > Center for Interstitial Lung Disease, and > self-referred myself. My > > appointment was scheduled for August 24th. I hated > waiting that > > long, but I had to. On that day I was seen by the > pulmonologist, who > > called in the transplant doctor. He told me he > wanted me to get on > > the transplant list ASAP. That day I did another 6 > min. walk test, a > > new PFT and HRCT. They also asked me to sign > Releases to get all of > > my records from Cleveland Clinic so that some of > my tests wouldn't > > have to be performed a second time. Four weeks > later I was scheduled > > for a full week of testing. Each day I had an > intinerary to follow > > which told me where to be in within a four block > area of Pittsburgh, > > each different facility of the UPMC, and which > tests would be > > performed. I had the following tests: > > HRCT, blood work, bone density scan, VQ Scan, 6 > min. walk test, > > oxygen desaturation test, PFT (done in an enclosed > aero-dome), and a > > right and left heart cath. I did not have to have > a colonoscopy > > because I was under 50 yr. old. > > The 5 day testing also included a 1/2 day meeting > with the pre- > > transplant coordinators and other patients > undergoing evaluation, a > > meeting with the transplant surgeon who would be > performing the > > transplant, a meeting with a Behavioral Health > person to discuss my > > pyschiatric evaluation, and a meeting with a > Financial Consultant to > > prepare for the expenses associated with > transplant and post- > > transplant. I was also given a tour of the > transplant section of the > > hospital and was free to talk to patients who had > undergone > > transplant that week! There were two in the > hospital while I was > > there. It was a moving and emotionally draining > experience. > > When I left Pittsburgh that Friday I was told the > results would be in > > the hands of the coordinator that day for all of > the tests I had > > performed! The Transplant team meets every Tuesday > to discuss the > > potential transplant candidates. From there,, they > decide who is > > ready to be put on the waiting list, who is not > going to be a > > transplant candidate and who may need to > accomplish other things > > before being put on the list. In my case, I was > telephoned on > > Tuesday and advised they wanted to see me again in > three months and > > they wanted to see me lose some weight. They > wanted to make sure I > > was committed to the program in order to be a > transplant candidate. > > The doctor even said to just try to lose 20 > pounds, then I willl know > > you are serious and put you on the list. > > Unfortunately, things didn't go all as planned > either. My right > > heart cath. revealed Pulmonary Hypertention which > just complicates > > matters, but doesn't necessarily eliminate me from > being a transplant > > candidate. But then, even worse, my antigen count > had to be sent to > > a hematologist to be screened further. In this > test they would > > identify each and every antigen present in my > blood, to see if any > > could be ruled out. My antigen count is at 64% and > that is extremely > > high. What that meant is that there would be very > few people in the > > entire population who would be a donor match to my > antigens. But, > > hope is not lost. I may still be put on the > waiting list, who > > knows? I continue to battle losing weight. The > steroid effect on me > > was horrible and losing the weight is very hard. > But I have lost 20 > > pounds and I am working on losing another 30, to > be healthier, if > > nothing else. I go back to see the transplant > doctor in February. I > > will have to do another 6 min. walk test, HRCT and > PFT. > > I hope my information hasn't frightened you. It is > just === message truncated === ________________________________________________________________________________\ ____ Never miss a thing. Make Yahoo your home page. http://www.yahoo.com/r/hs Quote Link to comment Share on other sites More sharing options...
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