Guest guest Posted December 9, 2008 Report Share Posted December 9, 2008 Amy To have never mentioned it is unacceptable even if it was going to be followed up by telling you that you weren't probably a good candidate. What you should get is a referral to a transplant center and talk to them. Then if they tell you that you're not a candidate and explain why you'll have that knowledge. Now, there may be very valid reasons you wouldn't be a good candidate but you should be told that. We've discussed your pulmonologist previously and this is just another issue I'd have with him. Among the reasons you could be a poor candidate is age combined with other conditions or just other conditions themselves. You do have an autoimmune and depending on its severity and relationship with the PF, it can be something to make you a non candidate. For instance, if they believe its the cause of PF and would just do the same again with new lungs, then a transplant wouldn't be pursued. If you have other organs in bad shape, that can be a precluding condition. > > Hi Everyone: Have not been on in a while been having a terrible time breathing dropping to 50 just going a few feet. Loaded with fluid so taking lassix. Here is a question I need to throw out to everyone, I wonder why my pul. has never mentioned a transplant to me? I read where a 73 year old received one. Has this been mentioned to all of you or is it something I need to ask. My primary says I should ask to be evaluated. > Amy > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2008 Report Share Posted December 9, 2008 Well said Bruce. These are things I know howevere just hearing it from someone else. The refferal is another thing I did not know I could get. I do have other issues RA, type II diabetes. You are right the IPF might me from the RA but there again I should be told etc. Thanks for listening, I am still going to pursue this. Oh to breath with a good set of lungs one can dream. To: Breathe-Support Sent: Tuesday, December 9, 2008 12:06:38 PMSubject: Re: Transplant AmyTo have never mentioned it is unacceptable even if it was going to befollowed up by telling you that you weren't probably a good candidate.What you should get is a referral to a transplant center and talk tothem. Then if they tell you that you're not a candidate and explain whyyou'll have that knowledge. Now, there may be very valid reasons youwouldn't be a good candidate but you should be told that. We'vediscussed your pulmonologist previously and this is just another issueI'd have with him.Among the reasons you could be a poor candidate is age combined withother conditions or just other conditions themselves. You do have anautoimmune and depending on its severity and relationship with the PF,it can be something to make you a non candidate. For instance, if theybelieve its the cause of PF and would just do the same again with newlungs, then a transplant wouldn't be pursued. If you have other organsin bad shape, that can be a precluding condition.>> Hi Everyone: Have not been on in a while been having a terrible timebreathing dropping to 50 just going a few feet. Loaded with fluid sotaking lassix. Here is a question I need to throw out to everyone, Iwonder why my pul. has never mentioned a transplant to me? I read wherea 73 year old received one. Has this been mentioned to all of you or isit something I need to ask. My primary says I should ask to beevaluated.> Amy> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2008 Report Share Posted December 9, 2008 Well said Bruce. These are things I know howevere just hearing it from someone else. The refferal is another thing I did not know I could get. I do have other issues RA, type II diabetes. You are right the IPF might me from the RA but there again I should be told etc. Thanks for listening, I am still going to pursue this. Oh to breath with a good set of lungs one can dream. To: Breathe-Support Sent: Tuesday, December 9, 2008 12:06:38 PMSubject: Re: Transplant AmyTo have never mentioned it is unacceptable even if it was going to befollowed up by telling you that you weren't probably a good candidate.What you should get is a referral to a transplant center and talk tothem. Then if they tell you that you're not a candidate and explain whyyou'll have that knowledge. Now, there may be very valid reasons youwouldn't be a good candidate but you should be told that. We'vediscussed your pulmonologist previously and this is just another issueI'd have with him.Among the reasons you could be a poor candidate is age combined withother conditions or just other conditions themselves. You do have anautoimmune and depending on its severity and relationship with the PF,it can be something to make you a non candidate. For instance, if theybelieve its the cause of PF and would just do the same again with newlungs, then a transplant wouldn't be pursued. If you have other organsin bad shape, that can be a precluding condition.>> Hi Everyone: Have not been on in a while been having a terrible timebreathing dropping to 50 just going a few feet. Loaded with fluid sotaking lassix. Here is a question I need to throw out to everyone, Iwonder why my pul. has never mentioned a transplant to me? I read wherea 73 year old received one. Has this been mentioned to all of you or isit something I need to ask. My primary says I should ask to beevaluated.> Amy> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2008 Report Share Posted December 9, 2008 Amy the first time i met the pulmonary doc at Penn, a teaching hospital, he said he would refer me to the transplant team just in case I need it down the road. this was in march or april 2006. the transplant evaluation was July 2008 the follow up was the following month they said that I would be a candidate if my condition warrented it there was someone else on the board at that time, who was evaluated, she was told that she would not be a candidate because of other medical conditions so ask your pulmonary about it at Penn, the cut off age is "65" -- they will do a transplant through the 65th year Pink Joyce IPF 3/06 Pennsylvania Donate Life Subject: TransplantTo: "breathe" <Breathe-support >Date: Tuesday, December 9, 2008, 11:25 AM Hi Everyone: Have not been on in a while been having a terrible time breathing dropping to 50 just going a few feet. Loaded with fluid so taking lassix. Here is a question I need to throw out to everyone, I wonder why my pul. has never mentioned a transplant to me? I read where a 73 year old received one. Has this been mentioned to all of you or is it something I need to ask. My primary says I should ask to be evaluated. Amy Quote Link to comment Share on other sites More sharing options...
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