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miocean
Member
Username: Miocean
Post Number: 202
Registered: 07-2010
| | Posted on Tuesday, May 28, 2013 - 07:08 pm: | 
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Hello,
I have been active on the kidney-pancreas forum since receiving a kidney transplant in 2010. I have scleroderma and the fibrosis in my lungs is increasing to the point where I am looking into lung transplantation. I do not need a transplant now but due to the complications of scleroderma, the renal transplant and my age I am seeing how far I get with the process. I am currently on oxygen therapy upon exertion.
I have an appointment a UPenn in June for a barium swallow and initial meeting with the transplant team. This is encouraging as it means they find me healthy enough to evaluate me.
Any advice or support you can provide is appreciated. I know this will be a difficult process, that I may not qualify, or that I may never need it (keeping my fingers crossed on that one!)
Diffuse Scleroderma
Kidney Transplant March 11, 2010
St. Barnabas Medical Center, Livingston, NJ |
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Hostess Risé
Board Administrator
Username: Rise
Post Number: 17704
Registered: 05-2003
| | Posted on Wednesday, May 29, 2013 - 11:35 am: |
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Hi Miocean
Feel free to ask me any question that you may have about lung transplant.
We have many wonderful people on our sites here who I am sure can answer your questions as well.
What is the barium test detect again? I recently had a colonoscopy and endoscopy.
Are you able to exercise in moderation? Have you tried resistance bands? I feel this is the best way to go before trying out free weights.
Walking slowly on the treadmill helps to build endurance especially if you can build up your time. I was told the longer the better but it is not necessarily how fast you go that is important.
We are here for you! 
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miocean
Member
Username: Miocean
Post Number: 203
Registered: 07-2010
| | Posted on Saturday, June 08, 2013 - 08:35 am: |
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Rise,
The barium test is to see how the esophagus is working. It will be in a couple of weeks. I also need to bring my chest x-ray and CT scan.
I am able to walk slowly for about a mile and I live where there are stairs so I go up and down them a lot but I haven't worked out with weights in a while.
I am taking private instruction on breathing at a yoga studio today, then possibly a group class. Thank you, I'll keep you posted.
Diffuse Scleroderma
Kidney Transplant March 11, 2010
St. Barnabas Medical Center, Livingston, NJ |
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Hostess Risé
Board Administrator
Username: Rise
Post Number: 17726
Registered: 05-2003
| | Posted on Saturday, June 08, 2013 - 10:56 am: |
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Hi There!
Glad to hear from you. I just shared this link from several years back and I think you will appreciate what I have to share- I hope this helps you to feel better.
"To all who are waiting or have received a lung transplant- if you feel a tiny bit stressed you might want to read this thread on how to increase your oxygen saturation.
The simple test is to try it while measuring your o2 sats to see that this really works. This simple technique helped me to wake up from the ventilator!! "
http://www.transplantbuddies.org/tbx/messages/29187/11312.html?1291319087
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miocean
Member
Username: Miocean
Post Number: 204
Registered: 07-2010
| | Posted on Sunday, July 07, 2013 - 10:52 am: |
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Update:
I did not qualify at the first lung transplant because the barium swallow showed too much damage to my esophagus from scleroderma. Tomorrow I go to the second center for evaluation. I am looking at it as an information gathering session as I found the three kidney transplant centers I was listed at all had different amounts of information to give.
Being realistic, I probably won't qualify based on my esophagus but I will ask if anything can be done surgically to correct it. If I decide to go to another center it will be University of Pittsburg as they do higher risk transplants.
In the meantime, my shortness of breath has greatly improved since my pulmonary tests were done in Jan-Feb. probably due to stopping one medication and adding one for pulmonary hypertension. I am also using O2 upon exertion and while sleeping.
I post the results when I receive them.
Diffuse Scleroderma
Kidney Transplant March 11, 2010
St. Barnabas Medical Center, Livingston, NJ |
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Angie
Member
Username: Adarcy11
Post Number: 2
Registered: 07-2013
| | Posted on Sunday, July 07, 2013 - 10:55 am: |
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John Hopkins Hospital transplanted my mother and her esophagus was barely working. They put in a feeding tube. |
miocean
Member
Username: Miocean
Post Number: 205
Registered: 07-2010
| | Posted on Sunday, July 07, 2013 - 06:29 pm: |
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Thanks, Angie. John Hopkins is also a leading scleroderma center. Was the feeding tube temporary or is it permanent?
Diffuse Scleroderma
Kidney Transplant March 11, 2010
St. Barnabas Medical Center, Livingston, NJ |
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miocean
Member
Username: Miocean
Post Number: 208
Registered: 07-2010
| | Posted on Tuesday, July 09, 2013 - 07:40 pm: |
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Yesterday I visited a second center for evaluation for a lung transplant. Imagine this:
They ran on schedule!!!
I spent over an hour with the nurse coordinator going over my medical history. I was able to pull out the tests and labs that hadn't already been forwarded to her thanks to my handy-dandy binder system. She felt that even with the complications of the kidney transplant, scleroderma, pulmonary hypertension, and the damage to my esophagus the transplant doctor would still want to talk with me. The doctor spent a good amount of time with my husband and me and started by saying he wasn't going to tell me too much about because I knew all about one from my kidney. He focused on the health issues that I am currently experiencing and what to do to figure out what exactly is going on and how to correct them, if possible. His feeling is that whether I am transplanted or not, there may be things that can be done to increase the quality of my life. He expressed concern that the anti=rejection drugs for the lung could be toxic to my kidney but is planning on calling my nephrologist to discuss it. My BMI is also too high for them (it was fine for the first center but all have different criteria).
They drew 20 vials of blood for the most extensive labs I have ever had. I will then be scheduled for all kinds of tests including and right and left heart catherization, endoscopy, colonoscopy, stress test, exercise echo, further testing on my esophagus, another CT scan because the one I had recently didn't have enough images (?), meetings with a psychologist, social worker, neurologist, etc. He is also getting me a Pulmonary Hypertension Specialist, which I needed anyway. There are a few reports from doctors and my dentist that I need to have faxed to them. After all of this, a team will determine treatment options and if I am a candidate. All be done in the next couple of months so it will be busy.
Wow! Can you imagine my amazement! Instead of blowing me off as not a candidate he seemed to be genuinely concerned about giving me the best possible outcome. And...everything will be done at the same center. All of my doctors in the same place!
Am I dreaming?!?
My first impression was extremely positive but I am yet to pass judgement since I am the one that everything seems to get mixed up and frustrating for. At the least, I am getting more than there's nothing we can do, I'm sorry, get a wedge pillow...
I'll keep you posted.
Diffuse Scleroderma
Kidney Transplant March 11, 2010
St. Barnabas Medical Center, Livingston, NJ |
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papillonbleu
Forum Leader
Username: Papillonbleu
Post Number: 2249
Registered: 10-2007
| | Posted on Wednesday, July 10, 2013 - 07:38 am: |
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I am so glad that your initial meeting for the evaluation was encouraging in the sense that it looks like they are going to take an extensive look at your situation to see what they can do rather than immediately assuming that they can not do anything. The feeling that doctors have just given up on you can be a devastating feeling whether they say it directly or it is indirectly felt, from personal experience. Whether or not all this testing leads to a transplant, I do hope that they are able learn enough that it becomes possible to improve the quality of your life. I will be sure to keep you in my thoughts and prayers, and I will be hoping for what will be the best for you. Many hugs are being flown your way on the wings of hope.
Bobbiejo
Forum Leader-Multivisceral
dx: GERD 1995, gastroparesis 2002, pseudo-obstruction of the bowel 2004
multivisceral transplant, 6 organs, 10/06/05
University of Miami/Jackson Memorial Hospital
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Jack
Forum Leader
Username: Johnhollenbach56
Post Number: 586
Registered: 12-2009
| | Posted on Wednesday, July 10, 2013 - 08:34 am: |
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I agree with Bobbiejo that this does sound very encouraging, hope that all continues on a positive vein.
Jack Hollenbach
Received double lung transplant August 2 & 3, 2007 for COPD at UCSD Thornton Hospital, San Diego, CA
Live each day to your fullest, for it is a gift to be treasured |
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Hostess Risé
Board Administrator
Username: Rise
Post Number: 17782
Registered: 05-2003
| | Posted on Wednesday, July 10, 2013 - 09:25 am: |
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Dear Miocean
Just to let you know I have been reading your posts from email and wanted to get in touch with you to let you know I feel for you and I hope that everything works out well. You know I have been through the lung transplant evaluation twice.
I can hear your positive voice and willingness to go through all of the testing. Your determination and family support is so important as you know.
Keep us posted and I will be reading. Did you see the energy medicine blog I created?
LOVE and HUGS
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miocean
Member
Username: Miocean
Post Number: 212
Registered: 07-2010
| | Posted on Wednesday, July 10, 2013 - 09:06 pm: |
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Thank you all for your encouragement.
Rise,
I did see the link to energy medicine. Thank you! I investigated the book and will be sending you an email.
Diffuse Scleroderma
Kidney Transplant March 11, 2010
St. Barnabas Medical Center, Livingston, NJ |
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Angie
Member
Username: Adarcy11
Post Number: 5
Registered: 07-2013
| | Posted on Saturday, July 13, 2013 - 12:02 am: |
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Miocene
Sorry I haven't gotten back to you sooner. My mom had her transplant on June 21 and it has been a little crazy to say the least.
She failed the first barium swallow. The fluid came all the way up to her aortic valve. But two days ago, she passed the barium swallow test. I'm guessing that since her belly and esophagus had a few weeks rest then it became a little better.
Her gi doctor there at Hopkins said it wouldn't be permanent and they thought they could fix it.
It's kind of ironic. They finally gave her the thumbs up for her to eat and now she has no appetite and food taste funny and makes her nauseous. So go figure.
She was drinking a boatload of coconut water which has good results when it comes to GERD.
At any rate my advice is this. Keep plugging away. Just because they told my mom the feeding tube was permanent didn't mean it was even close to permanent. And even if it was, she would have been alive and now she feels food is overrated anyway. Before the transplant she loved to eat. And now we have to beg her.
It sounds like you might have found a good fit. |
miocean
Member
Username: Miocean
Post Number: 221
Registered: 07-2010
| | Posted on Wednesday, May 07, 2014 - 07:17 am: |
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My current status is a "pre-transplant" patient at Columbia Medical Center. I haven't been accepted to the program but will be seeing the transplant doctor every 3 months.
The good news is I am not "sick enough" to need a transplant right now. The bad news is the issue with my esophagus is still a concern. So, basically, I am in the same place as where I began.
Diffuse Scleroderma
Kidney Transplant March 11, 2010
St. Barnabas Medical Center, Livingston, NJ |
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Hostess Risé
Board Administrator
Username: Rise
Post Number: 18047
Registered: 05-2003
| | Posted on Wednesday, May 07, 2014 - 09:57 am: |
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Hi Miocean
Thank you for updating us
What are you doing for your esophagus?
Are you on a special diet?
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miocean
Member
Username: Miocean
Post Number: 222
Registered: 07-2010
| | Posted on Saturday, July 26, 2014 - 07:46 pm: |
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After a year of testing and appointments I was presented at the second lung transplant center and due to scleroderma, pulmonary hypertension, esophagus dismotility and a kidney transplant the have decided I am too high of a risk to transplant. I am disappointed but not surprised.
The last option is Pittsburgh. I'll contact them soon to see if they will consider me. I am disappointed but not surprised.
Diffuse Scleroderma
Kidney Transplant March 11, 2010
St. Barnabas Medical Center, Livingston, NJ |
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Jay Lackritz
Forum Leader
Username: Jay_ny
Post Number: 600
Registered: 01-2007
| | Posted on Sunday, July 27, 2014 - 01:38 am: |
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miocean,
Best of luck with UPMC. You are right in that they will take on riskier lung transplants than most other hospitals. For what it's worth, Cleveland and Methodist in Houston are also very large lung transplant centers that will also take on riskier patients, so if you have no luck at Pitt, you can also try Cleveland Clinic or Methodist.
UPMC in 2013 performed 100 lung transplants. Cleveland did 98 and Methodist also did 98 (143 in 2012).
Data from OPTN:
http://optn.transplant.hrsa.gov/latestData/stateData.asp?type=center
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Hostess Risé
Board Administrator
Username: Rise
Post Number: 18069
Registered: 05-2003
| | Posted on Sunday, July 27, 2014 - 12:32 pm: |
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Hi Miocean
Thank you for sharing your update with us. You are in my thoughts and prayers for a chance at Pittsburgh. I know they took a friend of mine who was turned down at other centers.
Please write back soon.
Sending you my LOVE!
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