Health Opinions Welcomed

[olddog]

I was recently diagnosed with ascites. Please bear with the back ground information, as I do have an important question at the end.

Ascites refers to abdominal pain and swelling as the result of fluid buildup. Many underlying diseases can be responsible for causing ascites, including tuberculosis, kidney disease, pancreatitis, and an underactive thyroid. However, the primary causes of ascites are heart failure, cirrhosis, and cancer.

I have known for over a decade that I was born with a genetic defect commonly called Alpha 1.

Alpha-1 antitrypsin deficiency (AAT deficiency) is an inherited condition that raises your risk for lung and liver disease. Alpha-1 antitrypsin (AAT) is a protein that protects the lungs. The liver makes it. If the AAT proteins aren't the right shape, they get stuck in the liver cells and can't reach the lungs.

Everything is pointing to cirrhosis of the liver. More test to be done.

General statistics for ascites is 50% survive 5 years. Alpha 1 has been known to cause cirrhosis to advance so rapidly that from onset of symptoms to death can be as short as 6 months, although that is very rare.

Liver transplant is the only option to fix the liver.

At the beginning, I said I believe I would rather die than have an organ transplant. Now that I am getting very close to crossing this bridge. I am wrestling with this opinion I once held. When my best friend's kidneys failed and he made a similar point, I found myself wanting him to get the transplant, arguing against myself as well. His early death was shocking.

What do others think about organ transplants? Would you have one?

[t walgamuth]

They are tough but sometimes the only choice for continuing life.

[1795]

There are no easy answers. There are risks and benefits associated with every decision that we make. In addition, there are no guarantees either.

What does your family think? What's the prognosis if the transplant is successful? Are you happy with where you are in life? We all know that we have to go sometime, and we think that we know what we want, but when sometime becomes more imminent, it may cause us to re-think things.

This is a rather personal decision that people close to you and your medical providers should be involved with. Whatever you decide, if you are happy with it, then it is the right decision.

Good luck.

[Mark IV]

They now do "living donor" liver transplants where only a part of the donor liver is used (i.e. the donor doesn't lose their entire liver and as the liver is one of the only organs to regenerate it repairs itself) so both participants can survive. There are some places that specialize in this, I know UMPC (Pittsburgh, PA) is one such. Worth a look....

[twobjshelbys]

First, very sorry to hear your news.

I think the good news is that liver transplants seem to be among the easiest and most successful. As was mentioned a "living donor" transplant is the best since you don't have to wait for a donor, but the down side is you have to find someone closely related that will under go as much trauma as you will.

Secondly, your situation is very complex due to interacting and perhaps defining genetic history. Before going in for the final I'd seek out an opinion from a diagnosis specializing facility like the Mayo Clinic. A trip to Rochester Minnesota in the winter isn't necessarily pleasant but a trip to Phoenix could be a nice winter respite.

[eschaider]

Olddog, (I always call you olddog but now might be a good time to get a first name) I have had many friends who have had successful organ transplants. I am surprised at the number not the outcome. Some were livers, some were kidneys, some were hearts. Most people may know one or two maybe three but my count of friends is somewhere north of six.

All have survived and had excellent experiences. Some came very close to the end before a donor was found. As Mark IV and Tony have already observed the living donor alternative, for liver transplants, can substantially shorten the wait time and it is something I would encourage you to explore.

On many levels your life will change after the transplant. You will consume some level of anti rejection medication for the remainder of your life. That is a small price to pay for the 'extra' years.

Do not let, perhaps principled but unreasoned considerations dissuade you. We all have a finite amount of time on this planet. When you are provided an opportunity to extend it into overtime, that kind of opportunity is made available to only a very few — do not dismiss it. Someone thinks there are things left in your life, on this planet, that need to be done by you and you ae being given that overtime to get the job done.

Take the overtime, do the job. When you are done you will be glad you did!

You'll be in my prayers. Wishing you the very best.



Ed

[olddog]

Ed, my name is Rick.

I am well aware of the living donor, but I could never ask anyone to do that for me. If someone volunteered, I might still refuse. I would need to understand a lot more. In reality, my sister who has one copy of the gene is in very poor health and could not do this even if she wanted to. My parents are in their mid 80's and each has one copy of the gene. Again not a candidate. My son also has a copy of the gene, with other health issues. So no one in my immediate family would be a candidate.

My reason for reconsidering is not that I want to live longer for me, rather I want to live longer for my wife. She has a lot of health issues and needs assistance for small simple things. She cannot raise her right arm, even after a shoulder replacement, so I have to put her hair up at night, as an example.

I find listening to other peoples opinions helpful, but when they explain why they formed that opinion, it is even more helpful.

Thanks to all who replied.

[olddog]

Originally Posted by 1795

Are you happy with where you are in life? We all know that we have to go sometime, and we think that we know what we want, but when sometime becomes more imminent, it may cause us to re-think things.

I have had a great life. No woman could have made a better wife for me. Two sons that would make any parent proud. A great job. I have been to Europe many times. I couldn't have asked for more. If I checked out tomorrow, I couldn't complain. I am comfortable with everything.

Friday I was sitting in a waiting room while they were running wires up my wife's spinal column. The plan is to electrically stimulate nerves to stop pain. I was sitting there and contemplating what will life be like for her when I am gone. This is what caused me to re-think everything.

[EM-0785]

Originally Posted by olddog

I have had a great life. No woman could have made a better wife for me. Two sons that would make any parent proud. A great job. I have been to Europe many times. I couldn't have asked for more. If I checked out tomorrow, I couldn't complain. I am comfortable with everything.

Friday I was sitting in a waiting room while they were running wires up my wife's spinal column. The plan is to electrically stimulate nerves to stop pain. I was sitting there and contemplating what will life be like for her when I am gone. This is what caused me to re-think everything.

Rick,

Your quote above is touching, a real quality person and perspective, congratulations on achieving being comfortable with your life to date.

Very sorry to hear about all this, thanks for sharing details to better understanding what you’re facing.

With parents still living, you may have (what I light-heatedly tell people with living parents) the longevity gene in you. If you can manage this situation, you may have many more years left.

Next step in managing this assumed situation (pending testing) sounds challenging. Many with transplants experience a net positive, even factoring in the ‘who’ and the ‘how’ of the transplant.

My perspective is if there’s a realistic decision path, you try. Things provided and exposed to us to use (like medical advancements) may well be part of God’s plan for us. If an organ doesn’t become available or doesn’t work once implanted, then it was God’s plan and your time. You’ll never know if there was more value for you to give and receive here, unless you try it.

As a Cobra owner, you certainly have that mental independence and fortitude to handle things you set your mind to…either way…possibly your next challenge to take on.

Given your interest in considering this for your spouse, I assume her perspective and your team perspective is valuable here. It’s your final decision, but for the team so to speak, and input leading to a decision based on your team conscience, seems a valuable approach. I’d probably spend real time in that area of this decision.

Another factor might be the science involved. Not to disassociate from your personal experience, but if you do the transplant, could you provide valuable information in long term medical efforts to overcoming specific medical issues with such compounding factors. You’re a rarity with this combination of factors. Also with more years, medical advancements may help to better manage the condition(s).

Information seems a worthwhile investment in helping to define the choice(s) and impacts. Getting good advice/understanding of the medical options I assume would help you make the best decision.

My Cobra friends are mostly 1-2 decades older than me. While I could go any day, the likelihood is I’ll outlive some of them. I cherish their friendship and feel like a book could be written about each of their lives. I’m sure similarly about you. If they can find a way to live longer, within reason while able to still actively function, I say all the better. However, I can and will appreciate their individual challenges and decisions as well, and in time. The same to you Rick.

Your family loves you, you’re a respected contributor to the Cobra community, you have the ability to forward the science/understanding/outcome of your medical issues to help others down the road. You seem to have a lot to live for. But the final determination is by you and how you assess the decision (do you have a realistic option path with a decision to make).

Best of luck to you and yours Rick, and for your testing results. Thanks for being you, keep it up!

[1795]

Originally Posted by olddog

I have had a great life. No woman could have made a better wife for me. Two sons that would make any parent proud. A great job. I have been to Europe many times. I couldn't have asked for more. If I checked out tomorrow, I couldn't complain. I am comfortable with everything.

Friday I was sitting in a waiting room while they were running wires up my wife's spinal column. The plan is to electrically stimulate nerves to stop pain. I was sitting there and contemplating what will life be like for her when I am gone. This is what caused me to re-think everything.

Rick,

Nice to hear that you are comfortable with were you are in general. I lost to close friends around high school graduation and at 18 decided that I would live my life in a way that would decrease the chance that I would be laying on my death bed saying "I wish I did this, or wished that I hadn't done that". It's good place for you to be.

Thanks for explaining further why you are at this crossroad. Some food for thought (I cannot and will not tell you what you should do, not my style), since your major concern is who would assist your wife if you were not around if you have not explored it, you wight want to see if there are any home health care agencies or volunteer services that could provide a limited amount of assistance; home health care agencies can get quite costly, so it may not be a viable option. My thinking is that if you do have the transplant is is quite possible that during your recovery period you may not be able to assist your wife, so somebody will need to be available for that.

On long term basis, unless your wife is significantly older than you, even with the transplant she will probably outlive you, so exploring options now may assist in ensuring that on a longer term basis that support is in place. I am optimistic in general and hope for the best, but plan for the worse. I imagine that you have given thought to this, so please do not get offended if I am suggesting something that you have already considered, I would rather be redundant than assume something to be true.

Good luck.

Jim

[ront49]

I have two very close friends that have gone thru liver transplants and both are doing well. From my perspective both are glad they had the transplants and I know their families are grateful. One just had his done this past year and is doing well, the other had his done about 12 years ago and had had no issues other than diet and exercise. Talk to your family and friends, they did and it was a game changer. Good luck and God bless.

[olddog]

Thanks to all. There were quite a few things in your combined words that gave me some things to consider that I had not yet thought of.

I should make something clear, as I do not want to mislead anyone. I am a little ahead of where I think I am at medically, however since I have told my Doctors that I would rather die than go through an organ transplant, they may not have brought this up. I wanted to think this through before I tell my Doctor I changed my mind. I believe I still have a fair amount of time (years), but I also know a lot about this disease. Things can advance rapidly. So, I want to get my head around things, and make the changes now before things get worse.

They drained the fluid off a few weeks ago and ran tests on it. I felt better with the fluid off. Based on how I felt this weekend, the fluid is back. It's had my mind thinking.

Trying to eat a 2000 mg sodium diet is very hard to do. Most healthy people likely eat about 5000 mg of sodium. This is a big change It cannot be done if you eat out or eat processed foods. For that matter almost all meats sold in a grocery store have been injected with salt water. I need to talk with a butcher shop.

Anyway thanks for letting me talk.

[hauss]

OLDDG; Thank you for having the courage to share this with us, it has made me take a step back and think of my own life. I broke my back about two years ago and recently my black lab was hit by a car and I had to have him put down.I know it sounds silly but that dog was my best friend and I miss him like a toothache. Do it for others not for yourself I am sure you are someones black lab.

[olddog]

Hauss,

As a Dog lover myself, I get it. Sorry for your loss. Some may think pets are not as important as humans, but rarely does a person openly share with another person what you can with a Dog or Cat (you can trust them to keep a secret). It is easy to form a close friendship.

Thanks

[snapier]

Can a low salt diet help with this condition???

[olddog]

Originally Posted by snapier

Can a low salt diet help with this condition???

Salt does nothing for cirrhosis, but it has a big impact on water retention. So it does not help the underlying problem, but it helps reduce and manage a symptom.

The water in the abdomen is very unpleasant, but that is nothing to having tubing stuck through you side.

[Alfa02]

Rick, first off Thank you for sharing, and hopefully you will get some great feedback from these posts, as our PNW group say, we're here for each other. Ditto, to everything said by one of my best friends (EM-0785). As he stated he has friends that are 10-20+years older then him (Me being one of them). We have a friend that will meet our maker, before either of us will, and I've learned (Not just life lesson's) but how to live life to the fullest every day, though him. We are 3-peas-in-a-pod (We joke it take's all three of us to make one good person ), and contact each other almost every day, about what's going on with our life's (Cobras are rarely mentioned, anymore, but that what started these friendship's). To me this what life is all about, Friends & Family, in the end that's all we have. I too lost my Boy (Mr. Bean, my Bassett Hound) 6-years ago, and still hurts like it was yesterday, the hardest thing I've ever had to do. Dog people are a special breed Your choice in the end will be the right one, Cheers Tom.

[Igofastr]

"olddog",

We don't know each other, but I feel for your condition. I'm a physician, though transplantation is not my specialty. Clearly, you take this decision seriously, and whatever you choose, the impact will be significant for you and your loved ones. The only thing I would add to the conversation is to not wait until the last minute to make a decision. The last thing you want is to wait until you're too sick to actually be transplanted.

That said, I'd do it.

Good luck!

[Anthony]

Well, it depends on how much you want to live, what you have to live for. Shelby underwent a heart transplant, which to me is a more risky operation. Liver transplants have been done for many years. The first transplant is straightforward. A redo transplant is somethng a lot more complicated

I actually participated in them in the mid 1990's at UPMC, as an anesthesiologist. I've also been at Duke, and VA centers. Yes, it's a major operation, but your alternative is not good, and I believe the success rate is pretty good. you need to talk to the transplant surgeon, program director. Comparing all transplant centers in the US, My first choice would be UPMC.

olddog, you are one of the few posters that I really enjoy your opinions and insight.

I think you still have a lot to offer to people.

[olddog]

Anthony,

Thanks for your kind words and recommending UPMC.

Rick