ChArles Bietsch
Forum Replies Created
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The primary purpose of head elevation is to prevent silent acid reflux from entering the lungs. There is a strong correlation between GERD and IPF. And several peer reviewed studies have been done to establish the connection
If you have not had a 24 hour reflux test you may consider it to verify. If proven that you do. There are remedies to alleviate
I had to have several before transplant, as it did play a role in my ipf
Good luck with your battle. Exercise, eat smart and avoid acidic foods, keep a positive mind set
You can also do an overnight oximetry test to determine if you desaturate while sleeping. Most people do as the heart rate slows.
Regards
Chas
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Hi I don’t know where you live , or if you are using a local / standard pulmonologist for evaluation
There are a variety of types / conditions that cause fibrosis in the lungs. Ie infection, autoimmune diseases, etc
To set you mind at ease find a pulmonary fibrosis center of excellence near you. Usually they are a specialized ILD department in a hospital
It’s good that your PFT’s are strong, no honeycombing , no bronchestatis….
Put your mind at ease and seek one out. I have known several that have relied on their local Dr, and waited too long before properly diagnosed
Regards
Chas
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Charlene…. It would depend upon what type of medication you are on. Some such as cellcept and prednisone are toxic to the liver and kidneys and preservation of their function is necessary for king yet survival. Alcohol of any kind is not recommended
Same if one is contemplating a transplant. Liver and kidneys need to be fully functional to be approved, and once approved alcohol in most programs is for forbidden
Just a few thoughts
Chas
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I can say after having a single 4 1/2 years ago my ipf cough all but disappeared. Still cough occasionally, but no where as debilitating as before. The new lung will take over the primary function . And the native lung will slowly fade…. Though mine has been relatively stable. My view, not a big issue to worry about. I was 72 at time of Tx at Mayo Clinic Jax. Blessings to you
chas
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If they suggested a stent it will likely not disqualify you. If they do it before you will likely have to wait for approx six months as you will be on blood thinners. Sometimes they take care of it during the Tx surgery depending upon age.
at my evaluation I had two over 60%, did not have stents , still don’t and that was 4 1/2 years ago
good luck on your evaluation
blessings
Chas
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Hi… Char
I responded to your article from the standpoint of a person who has gone through the process, and to share my experience and views
The title of the article was the “harsh realities”of lung transplant…, which could infer that your points are fact, and apply to all cases.
While some May experience issues you mention, many do not.
True, it is a daunting experience on many levels. So is living with IPF….
Each individual is different, evaluates and makes their decision.
outcomes are largely dependent upon physical condition, mental commitment, and compliance.
You speak from your experience, I speak from mine, which is to encourage individuals to follow the journey If they are able.
Transplant is a gift and a blessing that offers the chance to continue the journey….
Blessings to you on your journey …
chas
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Mark….
Some comments on your post….
Sure your immune system is depressed. However, you don’t have to move in a bubble. I have navigated the last two years with no issues and have led no less normal life than others.
It is no more dangerous than navigating the landscape with ipf. One virus could wipe you out as well. Just be careful
life expectancy is in as rolling 10 year a scale. Many live 10 years plus with no issues
the meds are not problematic for most
the cost is covered by Medicare and supplemental insurance
aftrer living with ipf for 4 years, I was txd 11/29/2017…, in the hospital for 8 days, no issues and living a great life
I would do it again in a heartbeat…, it has been a blessing and a gift for me and many othes
But, each had to come to their own conclusion. I would recommend that before you rule it out, sit in on a lung transplant support group meeting and ask questions
all the best…
Chas
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Charlene. Hi, read your article and sense this is coming from a place of uncertainty and/or fear.
I have to disagree with you on several points…. In particular the title of the article “harsh” reality????
what could be more harsh than living with IPF and not being able to do anything about it???
First, the statement trading one disease for another is rather skeptical. In reality it is trading a decking quality of life and probable death for hope and an easily managed lifestyle chance
Management of the meds are not problematic, and cause no significant problems for most
limitations on lifestyle are minimal, common sense, and a lot more freeing than being tethered to an 02 bottle
Statistics on LT survivability are based upon a 10 year moving average, and would currently include transplant stats from 2012. A lot of advances have been made since then
in fact, most die from other issues 1st year mortality is less than 10%
Myself, I was diagnosed in 2013x experienced a rapid decline in 2017, and was txd in late 2017 with a single Rt lung
My hospital stay was 8 days, no complications , and have been leading an active and normal life since then with minimal restrictions.
There are many in my transplant support group that are 10 years post …
Sure, some run into complications, but what are the alternatives ?
I have enjoyed travel, seeing one of my daughters get married, witnessed the birth of another grandchild, and watched the other 4 grow into really great people
If needed, I would do this again in a heartbeat.
It is a gift and a blessing from God….
Regards
chas2712