Lung Transplant Questions

[baker2009-10]

I have been newly diagnosed with lams as of October 2008. I am wondering since I may end up having to have a single or double lung transplant later down the road when this has progressed more, do you think it would be a good idea to get on the Transplant list now??? That way when the time comes I wont have to wonder if I registered too late for this.

So far things havent been that bad yet but am just now starting to feel the effects from it. I only get tired right now with strenous activity and have my ups and down.

I am going through what ever newly diagnosed patient would be. I went into shock then after enough crying, I started to get into the acceptance which I am still working on, but I am also down right Mad as hell right now.

I often wonder what I did to deserve this and If I have the option later down the road to get a lung transplant before I die, could I register now since people have died waiting for their lung transplants to happen while they are on oxygen.

So What I would like to know is if I could register while in the early stage that way I can be prepared for when my turn for the lung transplant comes if I dont die sooner.

Please let me know thankyou!

[harbauma]

Do you know what your lung function numbers are right now?  Especially important are the FEV1 percentage and the DLCO.  Usually those will determine whether or not you should think about being listed for transplant.  If you are relatively mild and not progressing rapidly then the recommendation may be to wait.  Do you have a pulmonoligist?  If so, what is their recommendation?

It used to be that time on the transplant list was used to determine your eligibility but I believe that has been changed now so that those who need it most and have the best match get the first call.

I have had LAM since 1982 and am still considered to be mild/moderate, relatively stable, and will probably never need a transplant.  I know many others who have similar LAM histories.  So you should not assume that you will need a transplant.  There are several others that I know who have started using oxygen but are still not considered to be close to needing a transplant or even being evaluated for transplant.

You may wish to wait a bit until your emotions (which are very normal) have a chance to settle down before making a decision on this.

Mary

[baker2009-10]

I'm not sure what those are, but I will keep those in mind. I am mild right now I think. I was just diagnosed in October. For the most part, I'm breathing ok right now. But I have been starting to get tired alot easier and faster durring the day which drives me nuts.

I am generally a very active person and I hate feeling so tired much more than normal now. Right now I only get out of breath If I over do it going up and down the stairs alot.

My last day of work is wednesday next week so I will be able to try and work on becomming more active as my body allows.

I used to walk regularly but since my lung collapse that has been hard to do especially with all the snow on the ground. I would love to be able to get back into a regular walking pattern again.

I do have a pulmonologist and he said that down the road I could be considered for a lung transplant if it were needed but right now we're not at that step.

I just want to cover all of my bases so I can deal with the changes as it comes.

I really appreciate the information as like I said all of this is SOOOO new to me. Anything that you can do to help me through this would be greatly appreciated.

Thanks Mary.

Erin Baker
Cedar Rapids Iowa

[harbauma]

Erin,

Have you registered with The LAM Foundation yet?  If not, I encourage you to do so since they can provide you with some resources like The LAM Handbook that will be extremely educational and helpful in understanding LAM.

Living in Iowa, you would be part of the North Regional Group of the foundation and I am the Liaison for that region.  If you give the Foundation permission  you can be added to my contact list.  We will be having a regional meeting in Minneapolis/St. Paul on June 27 for patients and families.  We have some top notch LAM experts coming and it can be a great learning experience and a chance to meet other LAM patients.  I think you would find it a very reassuring and supportive experience.

Mary

[basunov14]

hello everyone !!!


i am new in this forum and i want to learn from here.....


i wish you guys will help me......


thanks.....

[harbauma]

Welcome to the Community Forum!

A good place to start would be to tell a little bit about your particular situation and then ask questions on what you are interested in knowing. 

You can also read the previous postings on the Forum and contact the LAM Foundation (if you have not already done so).  They can provide you with a lot of information about LAM and perhaps more local contacts that you could talk to.

Take care.

Mary H.