What Do You Miss The Most?

[LightLizard]

Being a dialysis patient means you have to learn to compromise. Often, this means giving up certain activities and foods, hobbies and pastimes, as well as, in my case, working for a living.
Of all the things I've had 'taken away' by this condition, I have to admit that I miss sex the most. I did try viagra, but it wasn't very useful, to tell the truth. I spoke to the doctor and he said he could up the dosage. I have yet to try it.(The stronger dosage, that is.) Mainly because I can't afford it right now, but also because of my experience with it before.
It's hard enough being so useless, but being unable to please my wife is really playing on my mind, deeply. I also spoke to the doc about the possibility of getting testosterone injections. He said they could test me for a testosterone lack, but he didn't think injections would be the answer, for me.
What's a guy to do?

Useless near Seattle.

[stauffenberg]

Impotence affects about 60% of male dialysis patients and has two causes.  First, the toxins which dialysis incompletely removes build up and damage the nerves, causing inability of the nerves controlling the erection process to function.  Second, the toxins not cleared by dialysis damage the pituitary gland, which then no longer gives the necessary signal to the testes to produce male hormones.  So not only does the patient lack interest in sex, but he also lacks the capacity for it.  Therapy often has to address both problems, which involves male hormone supplementation plus drugs to compensate for the damaged nerves controlling erection.  In many cases, more serious drugs than Viagra, Levitra, and Cialis are required, such as self-injection with papaverine or prostaglandin E directly into the penis before sex.  Another option often used for dialysis patients is the implantation of a prosthesis in the penis so that it is artificially made to seem erect.  Unfortunately, these latter two treatments are so uncomfortable and unnatural that the majority of patients stop using them altogether within three years of initiating therapy.  Renal transplantation causes the male hormone level to return to normal in about 66% of patients, and can also sometimes allow the damaged nerves controlling erection to recover.

For me, what I missed most during the nine years I was on dialysis was my sense of being in control of my own life, since every other day was destroyed by the need to devote about 7 hours to renal therapy, counting the time to get to the dialysis center and back, and to wait around to be put on and taken off.  Together with the constant exhaustion, it made me feel that my life was some sort of bizarre nightmare filled with punishments, rather than what it had always been before, which was a creative endeavor to shape my own plans and realize my goals.

[st789]

I understand what you r going through.  My damn ex..... had no patience whatsoever when I was on dialysis.  It really hurts my self-esteem and confidence.  I thought of using the blue pills but my BP was quite high so I did not want to take a risk.  At those moments, I wished I could go back to my high school days and felt invicible like a stallone.  I hope your wife understand of your conditions.

[Sluff]

Being a dialysis patient means you have to learn to compromise. Often, this means giving up certain activities and foods, hobbies and pastimes, as well as, in my case, working for a living.
Of all the things I've had 'taken away' by this condition, I have to admit that I miss sex the most. I did try viagra, but it wasn't very useful, to tell the truth. I spoke to the doctor and he said he could up the dosage. I have yet to try it.(The stronger dosage, that is.) Mainly because I can't afford it right now, but also because of my experience with it before.
It's hard enough being so useless, but being unable to please my wife is really playing on my mind, deeply. I also spoke to the doc about the possibility of getting testosterone injections. He said they could test me for a testosterone lack, but he didn't think injections would be the answer, for me.
What's a guy to do?

Useless near Seattle.

There are other ways to please your wife. I'm sure she understands. Give yourself a break LL. 

[George Jung]

Right now I really miss swimming and sun bathing.

[tweetykiss]

Right now I really miss swimming and sun bathing.

George, I am not trying to imply you can no longer do it, but I thought I read somewhere you are still athletic.

[bdpoe]

For me, what I missed most during the nine years I was on dialysis was my sense of being in control of my own life, since every other day was destroyed by the need to devote about 7 hours to renal therapy, counting the time to get to the dialysis center and back, and to wait around to be put on and taken off.  Together with the constant exhaustion, it made me feel that my life was some sort of bizarre nightmare filled with punishments, rather than what it had always been before, which was a creative endeavor to shape my own plans and realize my goals.

I think this pretty much sums it up for me. There is also the isolation, loss of friends and financial problems.

We may not be as " useful " as we once were, but we can do little things for people we know and love while practicing
random acts of kindness when the opportunity arrises.

I know it aint easy.
....bd

[glitter]

I know my husband misses his work- we were self-employed and loving it. He said he misses eating without an upset tummy too.

[Adam_W]

I definitely miss bicycling the most. I've been trying and trying to get back into it, but I just can't get my energy level up to where I can do it like I used to. Even with daily dialysis on NxStage I can only ride maybe five miles before I just can't go anymore. I'm not giving up, though. I have a racing bike that cost over $1000, and I'm not going to let it just sit there forever. If Lance Armstrong could bounce back from testicular cancer and win the Tour de France seven times in a row, I think I can get back to riding 50 miles once a week even though I'm on dialysis.

Adam

[keefer51]

i don't know where to begin. Since i was on dialysis before i did as much as i could do while i had my transplant. I miss peeing and drinking beer and peeing again! I miss working. I am a printer and stand most of the time so my legs would swell. But i miss the sound of a press and the smell of ink. I miss some of my favorite foods. I too miss sex. I guess if i had a girlfriend i would miss it more. I miss the strength i used to have. I think most of all i miss my 34" waist.

[Chicken Little]

Most of all, I miss scuba diving and traveling to tropical places to scuba dive.   

I know we could still go on a vacation, but what if I get sick, what if I hit the organ lotto, what if..., what if..., what if....   

I feel like I'm serving a prison sentence and I have no idea when or if it will end.

[Zach]

But i miss the sound of a press and the smell of ink.

Ah, the old Heidelberg Press (got my hand swiped once) and cleaning up with Naphtha.

[Wattle]

I know we could still go on a vacation, but what if I get sick, what if I hit the organ lotto, what if..., what if..., what if....   

I feel like I'm serving a prison sentence and I have no idea when or if it will end.

What if...., what if..... I feel exactly the same way. I really need a holiday but what if........

I miss the freedom I had when my kidneys still worked. I took for granted so much that I no longer have the freedom to do.   

[RichardMEL]

LL - you're NOT useless just because some parts don't work as expected. I understand TOTALLY that you feel that way though.. I am sure your wife understands too and as someone else said there's more than one way to pleasure one's partner.

In my case I have no trouble getting an erection (woo hoo) but it's the stamina that fails me... and usually fails me in the worst way... like when you're right in the middle of things and fall flat on your face (so to speak). That really frustrates me. my (now ex) gf was understanding (and she's not an ex because of the diialysis thing... she's an ex because she's in another country now teaching english).. but for me personally, and I feel you feel the same way LL, it's a let down because you so want to pleasure your partner fully and be able to perform and to be let down like that sucks. Luckily I could get to the end of things I'd say 60-70% of the time so I consider myself pretty lucky. Of course I haven't had sex for 6 months so who knows what that percentage might be now

As for other things I miss... the freedom definitely.. the freedom to drink heaps... and to travel.. those are the two big things for me. I can still work which is good, and get around OK and lead a reasonably normal life, but the treatment sessions get in the way and it really limits being able to get away - specially overseas.

And I miss the fluids... Before I started dialysis I would drink ~3l of water (just water, not counting other stuff like tea, soft drinks, beer etc) a day... now I have to consume < 1l of total fluid a day and well.. it bites. Some days I am ok with it and others I really struggle.

So I guess those are a few of the things I miss.

[Sluff]

Us non-dialysis people take so much for granted---I'm guilty!

[MyssAnne]

I miss my body. I miss not having stamina. I miss not being able to sleep well.  On the other hand. I have grown as a person, and
am actuallly a lot nicer now than before. More patient, more understanding, more compassionate.

[KICKSTART]

I miss my horses soooo much 

[silverhead]

From our frequent conversations, and trying to bolster Sharon's spirits about her condition, (presently hemo X3 weekly, soon to start NxStage training), the thing she Misses the most is being able to use our travel trailer for even short trips to "get away from it all" , it was her dream to be able to do this for so many years and when we were finally able to buy the "perfect" for us small TT it was wonderful for her spirits and well being. Because of the tube in her back, she is unable to lay down in a bed and must use a recliner all the time, no way to put one in the trailer, so the result is that it has sat unused for 3 years and I have the dilemma of knowing we should sell it before it loses all it monetary value, but doing so a like telling her she has nothing left to look forward to and sort of a slap in the face to her future. But we will deal with it, looking forward now to the NxStage is buoying her up a lot right now........

[LightLizard]

Thanks everybody for your comments. It's good, at least, to know that I'm not alone in this prison.
Thanks Stauffenberg, for sharing your knowledge so feely. My doc told me some of that stuff, but you added the details that help make it digestable, as hard to swallow as it is.
Yes, it's bad enough having one's life devatstated by this, the loss of one's dreams, just when they were starting to bear fruit, the loss of recreational interest, profession, but to have one's very manhood ripped away is the insult I can't stand.
Oh well. Tomorrow is another day. Perhaps it will bring some measure of joy.
I guess that's the best we can do; look for possibilities of joy.

love

~LL~

[jbeany]

I worked at an architectural firm.  I miss seeing something that started out as a scribble on paper turning into a finished building.  I miss the challenge of designing floor plans and drawing something up so the client says, "Yes, that's what I was picturing."  I miss that feeling of accomplishment.

[rimbo74]

I also don't have problems with erection but its not the same when you are hooked up to a machine nightly.  My gf and I, or I should say I, try to always think when I can fit some fun in.  I also missing being able to go swimming with my  daughter although I'm going to break the rules and go tomorrow.   

[Bajanne]

I miss being able to just up and travel to any country I wanted (and could afford!).  that is still my biggest problem.  For instance, there is an island in our group of British Virgin Islands called Anegada.  It is one of the flattest areas in the world.  Their beaches are legendary and it is the home of the Anegada iguana and of pink flamingoes.   I never went before and now the 'plane that used to take you there is out of service.  The ferry that goes there goes on Monday, Wednesday and Friday!!!  Yes, you guessed it, my dialysis days!!

[Bette]

I miss the energy I used to have.  I am tired all the time.  I am constantly frustrated because I will make plans in my mind of things that I want to do, and halfway through them I will have to rest.  I know it's hard on my daughter.  I wish I could run and bike ride with her like other moms.

[Meinuk]

Besides the missing big three -  energy, unencumbered spontaneous travel and unmonitored drinking, I miss those 20 hours a week that I now spend going to and being at the dialysis unit. 

I used to fill my nights going out with friends, dinner, movies, plays, shopping.  Now, I spend those hours sitting in a chair, watching too much tv.  Home hemo can't come soon enough!

[goofynina]

I miss peeing     well, you asked