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Pulmonary Function Tests/Update on Lung Transplant Evaluation

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It seems like it has been taking forever (because it has been months) but I am nearing the end of my lung transplant screening at the 2nd center I applied to. The first center rejected me immediately due to extreme reflux and damage to my esophagus but the second one is willing to test further. I started this process around July and was told I would be finished in Sept. 


Here is the update on the current lung tests:


My Pulmonary Function Tests were very similar to last year. I had a very slight improvement on my Forced Vital Capacity and a slight decrease in my Total Lung Capacity and Diffusion. The differences were very minor and my scleroderma doctor, pulmonary hypertension specialist and I are very happy with that. The numbers are not good, but no severe decline. 


I still desaturated on my 6 Minute Walk Test but walked 50 meters further! I think Pulmonary Rehabilitation and exercising more contributed greatly to this. Although I have finished rehab I have joined a gym and am continuing to exercise as I don't want to lose what I have gained. 


My Echo confirmed the numbers of my heart catherization in August or September where my pressures went down to 23 (normal.) My PH specialist is continuing my protocol of Adcirca, a diuretic, oxygen during exertion, and exercise for now, I will probably have another heart cath this summer.


My CT Scan showed very little change from last year according to my PH specialist! This is great news because last year my fibrosis had increased and my lungs had started to honeycomb. I haven't read the report myself yet.


This week I spent a 13 hour day from start to finish at the transplant center. A two hour commute to and from, six tests and a meeting with the PH specialist. I had the CT scan, a Sniff Test to see if my diaphragm is working (it is), a chest X-ray, an arterial blood gas test, EKG, Echo, and the appointment with the PH specialist. I am still very impressed with the organization and professionalism of this center. I have had experiences with 11 hospitals in the past including kidney transplant screening so I have a good basis to judge.


I now have a neurological evaluation scheduled in a couple of weeks and maybe a few more interviews but the testing part is finished. Once these evaluations are finished the center will let me know whether I qualify or not.


It was last year at this time that I learned about the increase in fibrosis and developed pulmonary hypertension, putting me in the position to see if I am a candidate for a transplant. I started the transplant process and medication for the pulmonary hypertension but also put out a lot of positive energy that my lungs wouldn't get any worse and did everything I could to improve them including the rehab and a series of breath work. I have been seeing a therapist and working on dealing with the stress and anxiety of all of this. It hasn't been easy, it never is as we well know...


So now this part of the journey is almost over and an answer is in the future. I have found some new, better doctors. I also learned about the GI damage scleroderma has caused. I am amazed at the dedication my husband has shown, the time he has given up, and his unwavering support. Sometimes I think it is harder on him than it is on me.


I will let you know what happens next. One way or another, it will work out.



ISN Artist

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Hi Miocean,


Thanks so much for posting your update on your lung transplant evaluation.


It's great news that your CT scan and ECHO results are stable and that you've overcome the first hurdle of the tests and shan't need to have any more of those for the evaluation.


I'm really hoping that your neurological evaluation and further interviews go well and it does sound as if you have gained more knowledge about how this bizarre disease has affected you.


Good luck with the next part of the evaluation!


Best wishes,


Jo Frowde

ISN Board Member

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Thank you so much for letting us know the latest, miocean.


Your strong will and effort, to keep yourself in the best possible condition, has definitely benefitted you in the process....Way to GO!!!


:balloons: Kudos to BOTH you and your husband :you-rock:

Special Hugs,


Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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