Recent Quad Amputee

[76er]

Hi, i just stumbled upon your forum. I hope I can learn from you, and offer some of my own experiences as I move through this new life. Male, 62 yoa, diagnosed with amyloidosis in 2011. Heart failure symptoms resulted in heart transplant, followed by stem cell transplant, and years of chemo and  clinical trials. Kidney status has worsened to current Stage 4, but no longer on dialysis. Spleen ruptured two years ago from amyloid damage. Blood infection last year resulted in septic shock, treated with vasopressors to keep me alive. That caused loss of blood flow to my extremities which had to be amputated. Arms amputated at wrist, and legs midway between knee and feet. After five months inpatient, I am now walking on prosthetics without crutches and continuing rehab at gym and with PTs. I just received both arm hook prosthetics, and slowly teaching myself how to use them. I was a very fit endurance athlete my whole life, and was a past national champion oarsman and road cyclist. I was a career military helicopter rescue pilot. Being so inactive now has me very frustrated, but I am somehow keeping my spirits high. My wife is my fulltime caregiver. I hope to become more capable and lessen the load on my wife. I would like to drive again, and also ride a bike again. Losing your hands and feet sure is humbling. I look forward to learning from others. Thanks.

[4fingerdiscount]

Welcome to the boards and I know that there are some great people here that have some good insight and experience. I'm new here as well and everybody has been very welcoming so it is my pleasure to welcome you here. Thank you for your service and although I can't imagine your frustrations, I'm here to hopefully offer some moral support. I have only lost my right index finger so don't have a lot of experience first hand with losing something big but I can say that your attitude is going to go a long way for you. Keep smiling and know that there are people out there that care and are willing to help. I look forward to chatting with you sometime. Stick around I think you might like it here. Best wishes my friend. JJ

[76er]

Hi JJ,  Thanks for the words of encouragement. I failed to specify I was a Coast Guard helicopter rescue pilot, doing the same type of missions you may have seen during the Hurricane Harvey flood disaster. I later flew as a civilian EMS pilot after 30 years active duty. I also forgot to mention my real name.
Regards, Paul

[cherylm]

Hi, Paul, and welcome to our little "family!" You've certainly been through the mill and I admire your attitude. I think there's a good chance of your being able to get back to a fairly active lifestyle. Although you have a lot to adjust to, you DO have your knees and enough of your arms to provide some good support for using hooks. Keep working at it...."normal" (or something relatively like it) will happen!

I've been a single below-knee amputee for 13 years now, and that one is actually quite do-able. A quad does have it tougher...but we amps can be pretty tough cookies! If you're up and walking unassisted, I'd say that applies to you!

[snowyh]

Holy Cow, Paul, you've sure been through the wringer! I'm glad you found our forum; somehow I suspect you'll help us more than we help you. Inactivity can definitely be a depressor, especially since you're so used to having an active lifestyle. So, how good's your health insurance? Upper-extremity prosthetics have advanced by leaps and bounds in recent years, but they don't come cheap. There are links to several companies that specialize in hand technology under our "Resources, Links & Networking" board. Look for TRS Prosthetics, Advanced Arm Dynamics and Touch Boinics threads (note there are 2 pages of threads). Getting the right prosthetics can make a big difference in your ability to return to the activities you love. Driving is definitely something you'll be able to master, and other activities will follow.

Where are you in the world? There are quite a few organizations that help people with disabilities remain (or become) active in sports and other activities.

And let's not forget about your wife--you're not the only one who's gone through a major life change. No matter how energetic and capable she may be, she's going to need some support herself if she's your full-time caregiver. How's she holding up?

Helen

[76er]

Thanks for the advice and encouragement. I live in the San Francisco Bay Area, where there are many resources available. The VA is helping me  with many benefits, as I am 100% disabled. Stanford had done most of my surgeries. I expect to receive an iLimb from Touch Bionics, at least for my right arm, although I just received a right arm hook last week. I am not the type of person to give up easily, and I hope to learn many new skills and attempt to live some kind of normal life. My wife is amazing and gave up her job to care for me. She was just certified as a Caregiver by the VA, and is entitled to a monthly stipend. The VA also has a Respite care program, which entitles us to 180 hours of in home health support per year, and we have someone 4 hours each week to give my wife a needed break.The VA also has a vehicle grant program to help pay for an adapted van to transport my motorized wheel chair, but I haven't applied yet. But I try to walk everywhere I go, as I don't want to be dependent on a wheel chair. That's it for now...I type with a stylus strapped sideways on my wrist, and can't use a mouse. My friends call me the Bionic Man. Off to my PT clinic. Paul

[azep22]

Hi Paul,

As others have said thanks greatly for your service to our country. My dad is retired career army so I know that although dealing with the VA can be frustrating at times, it is good that we have benefits available to our veterans and I hope they are treating you well.

I'm sorry to hear about your situation and I can't imagine all of the ordeal you have endured, but that of course makes you even stronger. Something that is so easy to tell others but is often hard to tell yourself! I guess that's why I joined this forum, for the great support and reasurance. And I hope I can give back to.

I'm facing a leg amputaion in the future but what I hope I can give you advice for is your arms. I am a congenital amputee born missing my left arm an inch below the elbow (basically an above elbow) and I have a partial right hand with 2 fingers. I wanted to let you know that although I am not missing as much as you, I can promise it will be OK and you will adapt! My parents were told that as a kid that I would never get to highscool because I couldn't write or feed myself! On the contrary I graduated with honors, serve and make coffee for a living and do so without any prosthetics even, and I type 60 words a minute albeit with lots of mistakes and a left arm adaptive pencil device.

The benefit you have is the long arm stumps. If you can rotate your old wrist locations you have a huge benefit for prosthetics, and even if not, the long lever arm will help a lot in strentgh.

I also wanted to say that if you decide to not always use prosthetics, use them all the time, or even never, it is ok. I was pushed to use prosthetics for a long time when I was younger and found that, although slow or awkward, it was easier for me to do most things without them. Needless to say, do what feels right for you and don't let others influence your decisions.

And last but not least, let patience be your top priority. It may take you a while to do something with your new arms, but realize that life is not a race, and let the satisfaction of completing a task bring you joy! My mom pushed me at a young age to look at doing anything as a thing to celebrate, and it's truly changed my way of thinkingn for the better. I don't have fingernails on my 2 fingers, so even though I have part of a hand things such as soda cans are difficult. It may take me a couple minutes holding the can in my left armpit while prying a fork to pop the top, but when I do it i applaud myself and don't look back at any negatives!

It will take time to learn how to use your new arms, but keep your head up and realize life is what we make it : )

All the best
Alec

[76er]

Alec, thank you for the words of encouragement. It has been quite a few months since I engaged with the forum. I am now fairly proficient with my Touch Bionics iLimbs. I just got certified to start driving with adaptive equipment for steering, braking, and accelerating. I had my left leg socket rebuilt after landing in the ER with cellulitis and a terribly painful pressure sore, probably caused by too much activity, not enough time off my feet, and a poor fit, due to my stump changing volume during the first year. I am staying positive and starting to be more comfortable when going out in public and socializing with others, including strangers. Thanks to the others in this forum, too. Paul

[snowyh]

It's good to hear things are going so well for you, Paul--both prosthetically and psychologically. Keep us updated from time to time, would you?

Helen

[rocket1961]

Hi everybody I will be having a below the knee ampertation in the near future.had a bad accident in work crushed left foot.just would like to introduce myself .I was a very big road cyclist before accident so looking for some info about what to expect after surgery any info would be very helpful as I like to no everything before I go under the knife regards msrtyn