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Author Topic: I don't even want it.  (Read 4027 times)
KeenString
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« on: December 13, 2018, 10:55:17 PM »

(A rant.)

I am in my third month on PD. The road has not been smooth at all. (Two surgeries to get the actual catheter in and working, felt awful for recovery, blood sugars absolutely awful since starting PD when they were excellent before, multiple complications including constant pain with the catheter upon filling, draining, and just it overall being there with no resolution despite imaging, unable to sleep due to pain and discomfort, constant abdominal pain, the list literally is as long as a CVS receipt...) I have been to see the transplant team in Miami for a transplant consultation. Everything is lined up for a kidney pancreas transplant. I've gone through all the testing, I am a perfect candidate, I am almost on the list, I just need the final consultation, which I am waiting for them to call me for. Only...

...Okay, call me crazy, but I don't know if I want this. The thing is, I don't want to be on dialysis for the rest of my life either, but I don't know if I want to go through the double transplant.

Back in July of this year, I had a low blood sugar that sent me into a coma for several days. I won't give the long story. Lets just say the whole experience has left me traumatized in a number of different ways. I came so close to death, that the gravity of it is crushing. No one thought I was going to make it. When I came in, I was unconscious, and in hypertensive crisis, which is why my kidneys basically gave up the ghost. (They were already on their way out.) I am STILL recovering mentally from the trauma of this incident. I was just starting to recover, and things were just starting to feel like they were getting back to some modicum of normalcy when I was hit with this bullcrap and BAM, I had to go through a dramatic lifestyle change. (One day I will post a whole rant about how badly my nephrologist handled that one...)

Now, things are JUST starting to calm down again. I am back to working as much as I used to (I'm a workaholic,) I am back at my own apartment with my own things, I have my own routine, I'm doing my own thing. I need that feeling of normalcy to stay sane, and even though I know that a kidney/pancreas transplant won't take me out of the game for the rest of my life, I feel like the more time that goes by and the more things start to feel like they used to, the more I don't want to do it. I'd be completely happy managing my diabetes and the moderate CKD like I did before the accident, but I can't go back to that. I am forced to face the fact that my options are either transplant, or dialysis for the remainder of my life.

I have a support system. I'm only 30, and both my parents are still in the picture. Everyone, EVERYONE tells me that a transplant is the best option for me. (My nephro talks about it like it's the cure all, and doesn't seem to understand that it's a treatment for diabetes/ckd, not a cure, so we'll leave him out of this for now.) No one has asked me, "What do you want to do, and why? What are your thoughts on a transplant?" They just automatically assume I want it and that "Transplant" is the path I'm going to go down. And I'll be honest. That's probably what I'm going to do. But do I want it? No. To me, it feels like someone asking which finger do you want cut off. I don't want ANY of my fingers cut off, but if I had to choose, it would be the one that I would hate loosing less. But I would still hate it.

That's how I feel about a transplant. The surgery sounds AWFUL. I don't want to go through it. At ALL. I don't want to be stuck in a hospital. I don't want to go through the months of recovery. I don't want a foley catheter, or a stent, or an NG tube. I don't want people TOUCHING me. (I have awful AWFUL anxiety.) I don't want to go through all the discomfort. I don't want to go through all the doctor visits and test upon test. I don't want to find out what the anti rejection drugs are going to do to me. I don't want to have the constant worry hanging over my head about weather or not I've taken them and what if I've missed them and what if I can't pay for them. I don't want my stomach to look effed up because a surgeon cut my stomach muscles all up. The list goes on and on about all these things I don't want, but then when someone presents the possitive side of a transplant, when someone asks "Don't you want to not be diabetic anymore?" or "Don't you want to come off of dialysis?" all I can come up with is an unenthusiastic "Yeah, sure."

I feel like the minority, especially after reading through a lot of these posts on here. I find myself wanting to know EVERY. TINY. DETAIL. about the surgery and what will happen, right down to the nitty gritty (How did YOUR catheter feel coming out, and how hard will my surgeons clock me if I dictate my own surgery to them? If I complain enough, will they keep me Geodon'ed for the whole d*mn duration? What's the grossest thing that happened to you while you were in the hospital/while you were recovering?) All the information in the world doesn't help, though, because what I'm really looking for is, 'what will happen to ME,' and no one is going to be able to tell me that. I don't know what I should do. I feel hopeless and stuck, like a mouse backed into a corner by a huge, hungry cat. I am so lucky to be able to qualify for these transplants, but right now, I don't even want them. I just want to go to work. F@!*.
« Last Edit: December 13, 2018, 11:01:46 PM by KeenString » Logged

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Charlie B53
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« Reply #1 on: December 14, 2018, 03:07:59 AM »


I ca well understand your anziety over the possibility of allowing someone else to cut on you, forever changing your body.

I used to be a physical monster, working hard, burning massive amounts of calories daily.  As my kidneys were progressively  failing my legs started swelling. Larger and larger daily until they became so tight water began leaking through the skin of the front of my shins.  This progressed from a little bit until it began soaoking my socks and boats by mid-afternoon.  Too often the leakage sites would become infected, soupy, sometimes so badly I developed a temp of 104.5 and ended up in the hospital 12 days.  That's when the Dr's decided I had enough, I had to stop work, get off my feet, or I could easily die from another infection.  Dr well documented everything and Social Security approved my Disability.  Still, it sucked not going to worok and being productive.

Because I have spent my whole life eating to feed my activity I began gaining even more weight.  Without the activity on my feet my sugars began rising.  My legs would always be large and I began asking my Neph about Dialysis.  Would Dialysis stop this swelling?  Dr said it would take off the excess water and my legs would reduce in size again.  So I signed up to start PD while my kidney function was still 20%   It worked wonderfully, within that first couple of weeks I took off 40 pounds of water and my legs shrank back to normal.

PD was a necessary Evil.  It took a lot of time daily.  That first year I did manual exchanges, set the alarms on my phone to remind me when it was time.  Stop whatever I was doing around the property, Barn,, house, go clean up my hands and arms, get a bag, hang it, do my exchange, then try to remember what and where I was and get back to it.   Yes, there were times of drain pain, but I got through it and over time it did get better.  I figured nerves in the stomach lining became weathered, hardened to the contact of the cath and not quite so sensitive.  Who knows?  Then I got my Cycler.  The Cycler freed  up my days, no more interruptions.  What a relief!

But the Cycler also has a cost.  I had to give up most of my evenings and all night, connected to that machine.  Sure I could cap off between cycles but I had to make sure I was back and re-connected or that damn alarm would start blaring, reminding me I needed to get back to my bedroom.  With extension hose I did have range of the back half of the house, but I was still tied to that machine.

The great thing about PD is the freedom of food and drink.  I could eat and drink as much and whatever I pleased.  Virtually NO Restrictions.  Because of the constant 2 liters in my belly I found I couldn't eat near the volume of food and drink I formerly did working.  I near instantly began eating smaller.  I decided since eating smaller perhaps I should start eating wiser.  I began cutting fats, trimming meats carefully.  I also tried to eliminate as much flour products as possible.  Breads,, noodles, carbs, all are converted to blood sugars.  I started losing weight.  Grossly overweight my blood sugars had gone wild, fully developed type 2 insulin resistant I went through massive amounts of insulin.

Two years eating smaller and wiser I lost right at 100 pounds.  My insulin resistance quit.  My A1C dropped to 6.2   But the time involved in PD was a bunch.  I must have started cutting corners.  Setting up in a hurry in attempt to have just a few more minutes in my evenings before connecting.  In such a hurry one eveing I must have inadvertantly TO
UCHED a connector fitting with a finger, and not noticed it.  The resulting abdominal infection had me in the hospital long before morning in such agony I was barely able to draw in a breathe.  This infection refused to die.  Round after rouond of antibiotics the infection kept coming back, requiring another couple of days in the hospital and another extended round of antibiotics I had to inject into every exchange bag.  Only to have the infection return again.  Finally Dr had to remove my cath, while I was out Dr placed an angio-cath for me to do Hemo In-Clinic.

To my surprise In-Clinic Hemo was a piece of cake.  Three times a week I go sit in that chair, the Tech connects my Cath to that machine and I just sit and read.   Done.  I had all week, EVERY Night FREE!!!!

One problem.  Dr doesn't want to let me keep that blood Cath.    I had to have a Fistula created.  It didn't grow as expected and had to be reworked.  Then ballooned a couple of times, but finally working fine.   Surprisingly, pulling the angio-cath was a cinch.  Dr just grabbed it and yanked it out!  He did have to carefully cut the stitch that locked it in.  But I was amazed  how easily it pulled free.

Only a  couple of problems with Hemo.  Fluid control and diet.  I have to be very careful how much fluid I take on.  For my body size taking off 3 liters or more causes my calves to cramp, if not during treatment they will cramp in my sleep that night.

Diet, I have to Religiously take my Binders with near everything I eat to control my phosphorus, and NO potassium rich foods that I used to eat.  Like potatoes, tomatoes, bananas, oranges.

And did I mention my Needle-phobia?  Good thing my kidney hardly produce but drops now as needle have nearly scared the Pee out of me since I was a sick little kid.  I take a large Zanex before I go in for treatments.  I helps keep my blood pressure within range.

Really, Hemo Dialysis has not only kept me alive and doing surprisingly well, but given me back all those daiy hours and h ours that PD was taking.

Transplant isn't really an option because of other problems.  Dr had me try one of the anti-rejection meds hoping to stimulate kidney function.  I got so sickened from it I thought I was going to die.  I quit that med and within days I was so much better again.  I told Doc if that was required for a Tx then just forget it and give the kidney to someone else.  Hemo is working so well for me that I don't want to change a thing.

Read, study everything you can at kidneyschool.org  there is another site equally informative.  The more you know the better decisions you can make.

You need to become your own best advisor.  Ask pointed questions here and we will let you know what each of us have tried, and what we have found to work for us.  You have to make your own decisions.

Sorry for writing a Book.

Take Care,

Charlie B53
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UkrainianTracksuit
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« Reply #2 on: December 14, 2018, 06:18:27 AM »

You're right. No one can tell exactly how you will experience the surgery and recovery. And I really hate to say this, but speaking statistically, you are one of the many (possible) SPK patients and as a result, specialists and researchers have oodles of information to make vast highly educated guesses on how you'll handle it. And truth be told, most of us are textbook cases. Our brains and perceptions obviously will differ but that's for us to control. We are the master of our minds.

There are many points in which I could commiserate with you but like you say, it doesn't influence how you feel or your decision. That's totally your right to feel that way.

I'm around your age, had Type 1 diabetes since they cut me out of my mom, blood sugars were really well managed and I tried my best to live the most normal life as possible. (Education, work, marriage, travel.) I had kidney troubles as a youth and hypertensive in like, I want to say, elementary school. The one thing that really ties it up here is that I really did not want a transplant. At all. There are posts here where I said that from time to time. I had to be convinced to start dialysis as I thought conservative care was the right path for me. To be honest, my HD years were fairly trouble free so I thought, ehh, it works, why bother with transplant.

I heard about the surgery. I heard all the nasty things about the drugs. I heard the old adage "you are trading in one set of problems for another." After some rounds in Intensive Care, I was gun-shy of any sort of intrusive medical care. Having someone bathe me? Eww. Wiping up my twat and behind after going to the bathroom? Never again! And, in my hyperemotional personality, the thought of a donor family losing their loved one, for such treasured gifts to go to someone like me, was a heavy moment. I really didn't want a transplant.

Fast track a lot of stuff, but I got convinced to go for testing just for a kidney. At this point, I was a professional patient so none of the tests scared me. The absolute worst for me was upping the annual pap smear go get it done. Out of the whole process, that was the worst. Dentist, stress tests, ultrasounds, arterial testing, colonoscopy, mammogram, blood work. Nothing. As diabetics, we are used to going for blood work at labs. It was only after that the SPK was offered to me.

Again, like you, I was advised it was the best form of treatment and offered longer life expectancy versus HD. And so, I went on to be listed for the SPK, surgery done and to be honest, it was the best decision of my life. I didn't want anyone to cut me either (even though I have enough scars to be in a tiger attack) and now I am left with a ponch, but at least today, I had my tiddly number of pills and am off for a day without concerns of my blood sugar tanking or "crap, I have dialysis later."

After awhile, and further you go in your recovery, the blood tests and doctor visits decrease. I'm almost at the point where I will do blood work every 6 weeks and see the doc every 3 months. Post-surgical recovery is a drop in the bucket compared to the life you are able to live afterwards. But, you already know this. Just like you know a transplant provides the freedom from dialysis that allows you to attain the most normalcy.

Out of all the tension of "not wanting to do it" and "wanting to keep bodily privacy", I had to quit looking it the process negatively and look forward to life once I was stable and on track. Stability (as in being back home, back into a normal routine) came back after three months. It was a small price to pay for the (boring) normalcy I have today.

Finally, I am with you in that it's a treatment and not a cure all, so I don't want to present it as that way. And transplant is not the best option for everyone, so I don't want to make it seem that way either. But if you are a good candidate and follow routine, it is a good decision. Best wishes to you... you can message me if you have questions on the process, etc.

As for the Foley catheter, it just felt like a quick slide out of my pee hole... like slip slide, out!  :lol;
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Cupcake
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« Reply #3 on: December 14, 2018, 06:40:51 AM »

Dear Keenstring-nice Dodge Charger!
I get what you are saying totally. I think you have some PTSD connected to the incident of the coma.My niece had a preterm baby and spent 3 months in the NICU with her daughter and still can't walk into a hospital without a panic attack.(her daughter is now 8 years old and awesome) I recently read an excellent book titled "why we sleep" and he describes how soldiers with PTSD can't get to the level of sleep necessary to allow there emotional response to memories heal. Each time they THINK of an event, they relive it as if it is just happening. Sleep is so important, so not a good idea to consider the meaning of life or important decisions whilst sleep deprived.

I just came thru a transplant-just kidney which I think is easier than the double-and pain was minimal. My poor donor had a lot more post op pain than I did.
I would suggest get on the list, hang out on PD for awhile since it seems to be going a little better and allows you to work, and see how you feel when your number comes up-it could be awhile! Meanwhile consider some counseling to help with anxiety/sleep issues. Its so important. And keep us posted.
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PD for 2 years then living donor transplant October 2018.
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« Reply #4 on: December 14, 2018, 07:48:32 AM »

Try not to torture yourself with choices you don't even have to make yet.

Are you being treated for your anxiety issues?  It is very hard to have reasonable internal discussions about dialysis vs transplant if anxiety is clouding the tone of the conversation.

Since you are being told that you are a "perfect candidate" for transplant, then transplant probably IS the best option for you.  But perhaps you just need to give yourself time to come to the same conclusion.  You may never agree, and that's OK.  No one can force you to have a transplant.

Unfortunately, you ARE being forced to have onerous treatment for a hideous condition.

Like another poster rightly said, no one can know EXACTLY how your transplant will work and how surgery will go.  But then again, no one can precisely predict how PD will be working for you two years from now.

It is a fraught time for you, so perhaps the best thing for you to do right now is to go ahead and get listed, and then give yourself some time (and some mercy) to get more used to the whole idea of transplant.

Good luck to you.  Thank you for joining our community.  We are here to help in any way we can, but we cannot foretell the future.  But we can listen.
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« Reply #5 on: December 14, 2018, 09:49:39 AM »

My post-transplant surgical pain was minimal, at most.

What was a big annoyance was the foley.  It created the "gotta go really bad" sensation like you get on a road trip and the next rest stop in 40 miles down the road.  No relief from that sensation for the 72 hours the cath was in.  The surgeon was very helpful - medical guidelines require it be in 72 hours so bladder pressure will not damage the ureter connection, so my surgeon wrote the removal order for exactly 72 hours after my surgery finished.   The RN pulled it out at 5AM and it was a huge relief.

Absolutely no pain meds post cath removal, not even a Tylenol.  I asked for a written script for the good stuff rather than the go home" supply the hospital pharmacy usually sells the patient, and never had to fill it.

Don't worry about when you get on the list, as long as it is well under the typical wait time.  Your wait time starts from Day 1 of dialysis, not when you join the list.

Consider if you have a transplant last for 8-10 years or so, your body will be less beat up when you go back on D than if you never had the transplant.  I'm 60 and the first the surgeon said at the post-xplant office visit was "you just got yourself another 5-10 years of life expectancy".   I felt OK on dialysis, but people with no knowledge of my medical situation are noticing I seem to look better.

Got me a really cool scar - sickle-shaped about 12" long.    I hear chicks dig scars.   Don't worry about what men think - a belly scar is not going to be a deal breaker. My scar is bright pink now but will fade to the point where one will have to look closely to see it.
« Last Edit: December 14, 2018, 09:53:31 AM by Simon Dog » Logged
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« Reply #6 on: December 14, 2018, 11:45:14 AM »

There’s another point that I should have mentioned about the pancreas transplants and Type 1 diabetes. My doctors really express the research that shows having a pancreatic transplant allows the body to slowly recover from a lot of diabetic complications. Such as, vascular, nerve endings and digestive. To be honest, I had very little diabetic complications so it wasn’t a selling point for me but it’s a big deal to those in the SPK community. (ETA: as well as single pancreas and PAK procedures; a bit narrow minded in my thinking at the moment.) Just an assumption, but if you are well managed (as you said), I doubt that’s a selling point for you too.

But speaking about the future and normalcy, the SPK halts any of the wear and tear Type 1 would do on a body for a period of time. Just my skin thanks me for no longer having multiple injections since babyhood (never went the pump route)! There is a difference!

As for recovery, the pain on the pancreatic side is a lot worse than the kidney side. It takes a little bit longer to go away but it is not soul crushing, unbearable, or anything like that. But I won’t lie, it hurt, but then it went away slowly and completely. 18 days post-surgery (a handful of days after discharge from the hospital) I went to the mall. That’s just an idea of timing. Recovery from ICU was much, much harder compared to post-tx recovery. (It's apples to oranges but it's my experience.)

Don't worry about what men think - a belly scar is not going to be a deal breaker.
Almost was for my guy---and we were already married prior to tx!  :rofl; That's probably because he can go home, to any large major city, throw a rock and hit a Sasha Luss or Vita Sidorkina look-alike. So, it depends.
« Last Edit: December 14, 2018, 01:05:26 PM by UkrainianTracksuit » Logged
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« Reply #7 on: December 14, 2018, 01:17:16 PM »

You have a good case of the rants....

Being on the transplant list is a privilege. Not everyone gets that privilege. I would not be so quick to blow it. Transplant centers are busy and they do not have time to play around with people. They will simply go on to the next person.

I have no idea what the experience is for a transplant but i have seen several people who had it done and within six weeks they were out and about like they nothing done...

You say you do not want to be on dialysis forever. If you do not have the surgery then you will be on dialysis forever. That answers that question / concern cut and dry.

Sounds like the person who put in the PD tube does not know what he /she is doing. There should be no pain with the tube in. Placement is very important and the person putting it in should know exactly where to go with its placement. Not everyone could do PD but if that option is available it does have advantages... Disadvantage is it is a longer process than hemo though it is done mostly at bed time.....


 
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MooseMom
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« Reply #8 on: December 14, 2018, 02:15:30 PM »


Being on the transplant list is a privilege. Not everyone gets that privilege. I would not be so quick to blow it. Transplant centers are busy and they do not have time to play around with people. They will simply go on to the next person.

I have no idea what the experience is for a transplant but i have seen several people who had it done and within six weeks they were out and about like they nothing done...

You say you do not want to be on dialysis forever. If you do not have the surgery then you will be on dialysis forever. That answers that question / concern cut and dry.

You know, you're absolutely right.  I had never thought of it that way, so thank you for those profound words.  Just being in a position to have "a new lease on life" is a blessing and, yes, a privilege.




 
« Last Edit: December 14, 2018, 08:07:34 PM by MooseMom » Logged

"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
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« Reply #9 on: December 14, 2018, 02:41:57 PM »

When I had my transplant at 32 years old it gave me my life back.  I could work again and I felt 200% better.  I had very little pain that lasted for only a couple of days.  It was really hard on the donor as they were in pain for quite awhile.  I had no side effects from the drugs other than prednisone which gave me a fat face.  What I would give for another transplant.  My heart is making it so I my not get another one but I am still trying as I would like the freedom from dialysis.  My transplant lasted 22 years so I think it was well worth the effort.  I too like to work and before dialysis this time I was working 12 hours a day a physical job and I sure miss it.
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KeenString
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« Reply #10 on: December 14, 2018, 07:41:29 PM »

\
Being on the transplant list is a privilege. Not everyone gets that privilege. I would not be so quick to blow it. Transplant centers are busy and they do not have time to play around with people. They will simply go on to the next person.

I have no idea what the experience is for a transplant but i have seen several people who had it done and within six weeks they were out and about like they nothing done...

You say you do not want to be on dialysis forever. If you do not have the surgery then you will be on dialysis forever. That answers that question / concern cut and dry.

Sounds like the person who put in the PD tube does not know what he /she is doing. There should be no pain with the tube in. Placement is very important and the person putting it in should know exactly where to go with its placement. Not everyone could do PD but if that option is available it does have advantages... Disadvantage is it is a longer process than hemo though it is done mostly at bed time.....


Mr Ken, you're absolutely right. It's a privilege that so many others deserve more than me, because at this point, I'm still very angry at all of this, and probably (definitely) in a state of denial. I'm angry that all of this happened to me, and even though I know that if my kidneys failing is anyone's fault, it's mine (I did not take care of my diabetes very well as a child,) I subconsciously look for anyone and everyone else to blame for this. I want to blame my nephrologist. I want to blame all the doctors and nurses in the hospital. I want to blame the dialysis center. I am so full of anger that all of this is happening to me that I don't know what to do with it, and the only way I've been able to deal with it is to rationalize it. I think I am so blinded by this anger and this frustration and this depression/anxiety that I can't see what a gift it is to have the opportunity to be able to have what so many people wish they could have so badly. If I could give it away to someone more deserving of it than myself, I would, but unfortunately, I don't think it works that way. And that makes me feel awful.

Thanks everyone- your input and information is really helpful. (Even if I sound like I'm just complaining!)
Charlie B53- I do love reading, so I appreciate the book! I didn't know you could pretty much eat anything on PD. I've been diabetic T1 since I was 10 or so, and have eaten very healthy since I was a child, but I do like a lot of things that I'm told we as kidney patients are not supposed to eat. (Potatoes are my FAVORITE. I love squash, pumpkin, oranges, avocado...) My levels were never bad, so I eat whatever I want. However, the dietitian at the dialysis center is constantly lecturing me about what I have to limit and what I have to eat lots of. (Granted, I'm 100lb soaking wet, and I don't eat much to begin with, so I don't know if I even eat enough to HAVE high levels of anything! Did your dialysis center tell you that you had more freedom to eat what you wanted when you were on PD, or was that something you just discovered on your own? Because I feel as though my clinic is always telling me I need to limit everything! Also, like you, my legs were swellling very badly. Not to the point where they were leaking, but they were bad. If I can take one good thing away from going on dialysis, it's that my legs are back to a normal(ish) size.

UkranianTracksuit- Wow, I can completely relate. I feel like, since I have been diabetic since I was very young, I'm so used to health care routines, that having to maintain another chronic illness isn't a big deal. The dialysis team slotted me for two weeks training for the manuals/cycler, and I picked up both in four. They were shocked at how quick I could do it, and I told them I'd been diabetic and messing with medical equipment for more years than I haven't, this is a piece of cake. I think I've taken care of my medical issues for so long that I can't even fathom what it's like to NOT have anything to take care of. And I'm ABSOLUTELY gun shy. One of the things that was so horrifying to me when I was in the coma was that people were touching and doing things to me, and I didn't know it. I'm the kind of person that would rather pop stitches and be sewn back up just to give myself a bath rather than have someone help me with it! As far as the scar goes, I am ABSOLUTELY not worried about the scar. I think they're pretty cool. What I'm worried about is getting a weird belly. I'm VERY thin. As in, stick thin. I always have been. A scar I could care less about, but if the surgery is going to give me a belly, I'm gonna be wicked pissed. I actually do have a few neuropathy issues. Nothing huge, but I'm told they will clear up with the KPx. Thanks so much for your story, very helpful. I'm really glad to hear you're doing well, that's super encouraging!

Cupcake- Thanks! (It's actually a Dodge Challenger, but I know what you meant. Thank you much! He's my baby!) Would you say that book is worth a read? What do they recommend? PTSD sounds exactly like what I have, in addition to not being able to sleep due to the discomfort of the fluid being in me. I keep having dreams that I'm in the hospital again and I can hear the machines alarming, and I can't tell if I'm dreaming or not. It feels exactly like it did when I woke up in the hospital, and I can't tell if I'm dreaming, of if it's happened again. It's TERRIFYING. I hope you are recovering well from your transplant and are feeling like a new person!

MooseMom- You sound like my mom. Don't take that the wrong way, I mean that as the highest of compliments. My mom is very sensible and wise! You are right. I don't need to worry about choices I don't need to make yet. and I DO do that. I take medication for my anxiety, but am looking for something that either works better, or something I can do, as far as behavior modification, to help. I'm even looking into CBD oil. (My PD nurse says she has a couple of patients that this works wonders for, but for different issues than mine.) Thanks for your help, and your support! It means a lot.

Simon Dog- Chicks absolutely dig scars. At least I do. It's not the scar that I'm worried about, though! It's getting that weird misshapen stomach! Do you know how hard I work for these abs?! ... Ok, not very, but I don't want them to go away! When I went to my consultation, they told me I would probably have to go home with the foley. Right then I was like NOPE NOPE NOPE. If protocol is 72 hours, I don't know why they would tell me I would have to go home with it. Is it different with women than men? I've also heard that they keep the stent in for a very long time, and that the stent is very uncomfortable. Constant pressure up near your kidneys or something. A coworker had one, and he said he was miserable. Who knows if I'll need the pain killers, though. For some reason I can handle straight up pain, but discomfort.... I'm an absolute grump. Glad you are doing well with your transplant!

Sahern- I am sorry you are having such a difficult time with receiving another transplant. I can't imagine how frustrating that has to be. Like I said to Mr Ken, if only I could trade places with someone who truly wanted a tx, because I am certainly not ready! Hopefully something will change that will allow you another chance at a kidney. I am talking to my coordinator about prednisone, because I cannot take it. They gave me a list of medications they use, and prednisone is not on it. I took a small dose of it some time ago and it made me AWFUL sick, so I have to make sure to stress it to them that it isn't an option for me. 22 years us a long time! Can I ask you, though, did knowing that the tx kidney had an expiration date have any bearing on getting a transplant or not? Do you feel kind of... betrayed that it failed on you? If that's an intrusive question, I apologize. These are just things I think about. sometimes I think, why bother go through all of this, when I am just going to end up needing another transplant later on in life, and by then, I probably won't be able to get one? And then I have to remind myself of why I'm doing it.


Thanks EVERYONE for taking the time to give me useful and helpful information and stories. I can't tell you how much I appreciate each and every one of you!



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MooseMom
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« Reply #11 on: December 14, 2018, 08:18:17 PM »

NO NO NO NO NO NO NO NO NO NO NO NO!!!!!!

DO NOT ALLOW YOURSELF TO FALL INTO THE "WHAT I DO AND DO NOT DESERVE" TRAP!!!!!

None of us "deserve" kidney failure.  None of us "deserve" anything.  None of us "deserve" nothing, either.

It is what it is.

But I will say this.  I, too, was very angry.  I had a disease that I'd never heard of.  It was so random, so out of the blue, so unexpected, and so it left me angry.  What could I do with that anger?  I made it work for me.  I used it to take control over what I could control.  I worked hard to get on the transplant list (it's not easy!); my anger was useful. 

For what it is worth, I never felt the stent, even when it was removed.  I am female so don't know if it is different for men.

I hope you can find better medications for your anxiety.  Having a chronic illness like ESRD is bad enough without the weight of freefloating anxiety bearing down.
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« Reply #12 on: December 15, 2018, 05:07:38 AM »

You could be my American twin. We relate so much.

YES!!! to the fact you’ve taken care of medical issues for so long that you can’t imagine a time without it. I’m still struggling with this a little bit. As long as I can remember, I (or my parents) needed to do “something medical” during the day and now, having the normalcy of only pills twice a day is a bit.... odd? A grateful oddness, but still odd. It was seriously a HUGE life change and sometimes I ask myself, “who am I now?”





YES!!!! to the horrifying feeling of being in a coma and people doing things to you! OMG, I think back to those times and shudder. Family would tell me (when in a state of consciousness) what was done (such as bathing or how they wheeled me out for tests) and it’s just an uncomfortable feeling.

The good news with transplant is that the time that you are “out and unaware” is relatively short compared to a coma. After surgical time and post-surgical la-la land for a day and a half, I realized the nursing staff barely bothered me. They obviously stopped by to look at my incision and take blood...but for the most part, I was on my own resting. They just consulted the computer screens for the info! A lot LESS intrusive than Intensive Care. It sounds odd because there’s a surgical team in there, with their hands poking around in you but, the whole experience was less traumatic than a coma. As odd as that sounds...

As for the belly situation, yeah, there may be a problem. I had a flat tummy. At least up here, docs tell you that a flat stomach is preferable prior to pancreatic transplant. (At least a “sort of” requirement) But afterwards, I’ve developed an uneven belly. It's a work in progress, and I’m sure, just like you, after a while, it will come back to some kind of proper shape.



So, I read replies to other people, and my experience with the Foley was that it came out after a week. I didn’t go home with it but I went home with a bunch of drains. The bladder stents weren’t too bad at all and it didn’t feel as though I had them in me. Sometimes, there were somewhat uncomfortable sensations, but it wasn’t constant. My stents came out after a month and removal was easy. No pain. So, there’s that to consider versus your co-worker’s case.

A big thing with the pancreas transplant is pooping. Since it is attached to the bowel, docs really want to hear good gut noises and hopefully soon, going to the bathroom. Laxatives may be involved after a certain point but those post-surgical times that you do go, they’re uncomfortable. The whole right side is one big “wtf are you doing to me??? (in my case...)” This is NOT trying to scare you but in a sense of general information, some patients get collapsed bowels around the surgical area and need further treatment to have that fixed.

Sadly, this post is going to get longer and I REALLY apologize.



In regard to your anger, it’s common. My anger isn’t so much out of what I had to deal with or “why me.” Anger stemmed from how stupid illness stifled SO MUCH of my life. Sure, I’ve lived a “good life” but it’s never what I wanted...and it sucks living with the cloud of disappointment. The thing with illness is that it’s random and could happen to anyone at anytime. If it doesn’t happen to someone today, something will face them in the future. Don’t get me wrong, I still get angry, but like MM said, channel that anger. Turn a negative into something positive, as sick and cheery as that sounds.

As for your diabetes causing complications, we’re told that optimal control prevents all sorts of things. You know what? It’s just a crappy disease that has points where it is difficult to manage and even “good” HbA1C’s are not “regular like a normal person” and slowly does damage over time. I always asked myself, “what could I have done better?” (even though there is a family history of kidney disease) and falling into such traps is only self-defeating. Take what you have now (relatively good health for someone chronically ill) and make the best decisions for the future moving forward.

Lastly, in the case of “deserving a transplant.” From the beginning, I felt I never deserved it. There are days I still feel that way because I see others, so much more loved, languishing while waiting. Why would a doofus like myself be worthy of such a wonderful gift? Questions of “who deserves what” puts us in an endless cycle of doubt on matters that we really have no answers. Leave such unanswerable questions to the unemployed philosophers out there and settle our minds on knowing it’s all a big question mark of fate in the sky.



It’s best to stop thinking of who deserves what but rather, understand it in a wider context. You, like so many others, have put yourself up for consideration for transplant. Right now, emotionally, you feel you don’t want it but you acknowledge this is the path you probably will take. Once you are listed and called, the deciding factors will come down to benign scientific matters that are determined by a system rather than emotion. It will be determined you are the best match for those organs. All sense of “who deserves what” is removed because if we opened it to a competition like that, pretty much, very few would get organ transplants.

I could write a book on the rude replies I got when seeking a live donor kidney. It's come down to understanding it's best to leave it up to impersonal systems than cloud judgement over who deserves what and when. No one deserves anything. Artificial constructs and mental barriers create these questions.

Remember (as has been previously said), you are not forced into a transplant so if you really (really) don't want to do it, you can always say no. However, I think logically, as you said prior, it's something that you'll do. Make sure you reach a sense of peace though. (as much as you can with such a daunting situation) Please take care and I am so sorry for this crazy ramble.
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« Reply #13 on: December 15, 2018, 06:22:27 AM »

Quote
Lastly, in the case of “deserving a transplant.” From the beginning, I felt I never deserved it.
This is a complex question.

Do prisoners deserve transplants?  Does it depend on the level/type of offense?

Should a US citizen be denied a transplant because an illegal alien came up on the list before him?  (remember, anyone who gets a cadaver transplant deprives someone else of that gift)?  How would you feel to be told "You would have a kidney today but for a crime someone committed to get on the US list"?

What about a rich foreigner who travels to the US legally to get on the list and wait for an organ?

The question of "who deserves to be saved" came up when dialysis was new, and scarce, in the 60's with the Seattle death panel.  In order to even make it to the panel, you had to be able to cough up something like $10K/year (in 60s dollars).
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a good year for Chevys

« Reply #14 on: December 15, 2018, 07:37:34 AM »

I would definitely recommend that book "Why We Sleep" by Matthew Walker PhD-its about $11 on amazon right now. His solutions are pretty standard but when you learn the reasons WHY people have trouble sleeping, its helpful to figure out what treatment will work. You really sound like PTSD. I'd share my book but I gave it to my brother who is a notoriously bad sleeper-and he drives a semi so of course I am worried he will fall asleep at the wheel.

I am doing great! My belly dancing days are definitely over! I plan to use silicone gel/patches that help scars flatten out once all the scabs are off. Those are called ScarAway and they sell them on Amazon for c-section scars so they are long strips-perfect. My donor is using them already on her incision and she thinks they are working.

I had offers from Living Donors that are young women in their 30's who hadn't had their babies yet-I found out that donating a kidney raises a woman's chance of toxemia during pregnancy from 5% to 11%. So I drew the line there! Lucky for me my sister in law is only 47, healthy as a horse and a generous person. I am showing my appreciation planning a trip to Ireland next summer for my donor and her husband (my sleepless brother). That makes me feel better about subjecting her to that pain.

You've gone thru a lot, and have value! You deserve to be healthier!
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PD for 2 years then living donor transplant October 2018.
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« Reply #15 on: December 15, 2018, 10:30:42 AM »

Quote
Lastly, in the case of “deserving a transplant.” From the beginning, I felt I never deserved it.
This is a complex question.

Do prisoners deserve transplants?  Does it depend on the level/type of offense?

Should a US citizen be denied a transplant because an illegal alien came up on the list before him?  (remember, anyone who gets a cadaver transplant deprives someone else of that gift)?  How would you feel to be told "You would have a kidney today but for a crime someone committed to get on the US list"?

What about a rich foreigner who travels to the US legally to get on the list and wait for an organ?

The question of "who deserves to be saved" came up when dialysis was new, and scarce, in the 60's with the Seattle death panel.  In order to even make it to the panel, you had to be able to cough up something like $10K/year (in 60s dollars).

That's why I continued with...
Questions of “who deserves what” puts us in an endless cycle of doubt on matters that we really have no answers. Leave such unanswerable questions to the unemployed philosophers out there and settle our minds on knowing it’s all a big question mark of fate in the sky.



Once you are listed and called, the deciding factors will come down to benign scientific matters that are determined by a system rather than emotion. It will be determined you are the best match for those organs. All sense of “who deserves what” is removed because if we opened it to a competition like that, pretty much, very few would get organ transplants.

As for “What about a rich foreigner who travels to the US legally to get on the list and wait for an organ?”, I’ve heard this complaint a lot. Not like we’re billionaires or anything of the sort... but my parents had the means to do things.

Due to the fact they hired the best immigration consultants and acknowledged responsibility for my grandfather’s care (in regard to dialysis), we were allowed to move overseas. Otherwise, it’s a huge roadblock that stops many people. In my case, I wasn’t so much a drain on the system yet and received citizenship before it happened. (Then again, US system is much different compared to the barriers of socialized medicine, so it could be easier for those going to the US...) I'm pretty ignorant of the US system.

By Day 2 of my transplant, my phone went off the hook that I waited pretty much only days on the list because of money. Like I really wanted to deal with that then.  ::) People mistakenly thought I had resumed living in the West to get on a transplant list. The only thing that stopped me from a transplant “at home” was my own mind. I didn’t want it just like I didn’t want it while living here. Secondly, I really didn’t want to move to the capital (where the only 2 hospitals that do it are and one does K/P tx anyway). It wouldn’t have mattered anyway as the wait back home is around 2 years just for a kidney and shorter for K/P... not exceptionally long at all.

So, after moving back here, and going through the process like everyone else, I got called. Still, there’s a lot of misinformation (and gossip) how 1. I got on the list 2. how quickly I got called.

This part of it absolutely plays no role in my feelings in regard to deserving vs not. My question of “deserving” revolves around what I bring to the world: I’m not a mother, never will be one, I’m a pretty crappy wife and my life is ehh. I think about all the other people out there that have much more potential. But that’s my own complex and probably not of others or the O.P. Done derailing now!  :lol;

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« Reply #16 on: December 15, 2018, 02:26:42 PM »

Oh for Pete sake..

Reading some of theses comments really cause a person's eyes to roll. If you do not want to be on the list then don't bother. Don't get the damn kidney. There are thousands of people who do want the kidney. I will tell you something you go into a transplant center expressing some of the feelings posted here YOU WILL NOT BE PLACED ON THE LIST. Transplant centers do not want people with  that sense of attitude. Like I said before it is a privilege and you are expected to take very good care of this privilege. Don't be like yea I got one and I do not care about it anymore........ Kind of like being selfish.......

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« Reply #17 on: December 15, 2018, 03:47:13 PM »

There’s a difference between “not wanting a tx” then and my views now, if you refer to some of my comments. (Which I assume since I’ve posted some Eeyore views besides the OP; the rest are positive.)

When I didn’t want a tx, I never bothered the local coordinator. Never attempted to get listed. When I researched more than just the bad things I heard (from disgruntled patients who had to take cyclosporine) I went in 100%.

Why waste the team’s time prior to being listed?

My point is that minds change so though I said “I didn’t want it” numerous times in this thread, that doesn’t reflect my view when I made the final decision. That doesn’t reflect my positive views on tx now. A lot of my “no” position came from lack of education and fear. I was pretty afraid but it turned out to be the best decision of my life.

And to be clear, I expressed these thoughts/hesitation over “deserving” to both my clinic RSW and tx social worker at assessment. Both said it was normal (survivor’s guilt as I know it now.) and they were more concerned with compliance. As “I don’t want a tx” translating into “I’m not going to take care of this gift.” Like you said about attitude.

But I agree, to express such an explicit thought, is a red flag to the decision-makers. Again, don’t waste a valuable gift or time that could be spent on another patient.

The utmost respect for my gifts and donor are at the root of feelings of inadequacy. Kind of feeling as though I want to make an unknown stranger proud since it is literally “the gift of life.” An impossible task I created for myself.

Commiserating with the OP does not mean I align with supporting a “don’t want” viewpoint and going ahead with it. But rather, mindsets can change and sharing experiences from the same sort of surgery (SPK) is beneficial. I wish I knew someone that went through an SPK to tell me all sorts of things that might have been valuable.

Hope I cleared up my contribution to your statement “some comments.”
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« Reply #18 on: December 16, 2018, 10:30:55 PM »

Ok, so 'deserve' probably wasn't the right word. What I feel is 'bad,' because I know that I am a 'perfect candidate' for a tx, but I don't want one. Meanwhile there are other people who are willing to do anything, and want a tx so bad, but circumstances beyond their control make it impossible for them. And I know how awful it is to just want something, your own body, to WORK, and not be able to have that. That was me when I was a child and dx'd with t1d. It makes me feel guilty that I have this opportunity that other people want, but I don't. So in a way, I feel as though there are other people who deserve it more because they've wished for it more, prayed for it more, folded more paper cranes, sacrificed more virgins... you know, basically they just want it more. I feel that a kidney should go to someone who wants it.

UkranianTracksuit- Ugh, exactly! I have a TON of people come visit me when I was out of it, and THAT freaks me out, too! I work at the hospital I was in, I had a bunch of coworkers stop in. My roommate (good friend) came to see me every day. One day, when I was home again and we were chilling in the living room and talking about something to do with the hospital, she casually says, 'You kept kicking your legs around. I kept trying to cover you up, but a few seconds later you'd flail around again. I saw your vagina." (And then she just kind of grinned and laughed because under normal circumstances this would be hysterical for both of us, but I can't tell you how mortified I was, because I had no memory of ANYONE or ANYTHING.) People kept telling me things I did or things that were done to me when I was AMS that I have no memory of, and I finally had to tell them to stop because it was setting off panic attacks. I'm still real squeamish and I don't want to know anything new, but in hindsight, some of the stories and conversations that happened were pretty hilarious. I'm sorry you have had to go through the nightmare that is a coma, too. And I'm also glad you came out of it! It's good to hear that the tx surgery isn't as invasive. That is... really a huge fear of mine. Especially having to go into ICU afterward. I will say that, after I was AWAKE from the coma, I pretty much had no problem being there. I was in OBS and I knew most of the nurses on the floor. To tell you the truth, I would be like... 50% more comfortable with the surgery if I could get it done at my own hospital, just because of that. Ok, so as far as the pooping goes, pain killers never back me up, so I'm HOPING that if I go through with all of this, perhaps that will aid in me not having a problem with a collapsed bowel or anything. I... don't even know how that works. I haven't gotten to research that part of the pancreas transplant. One panic attack thing at a time. To be honest, I don't know what a kidney/pancreas tx scar even looks like. I google image searched it and came up with three different scars, all saying they were KP scars. Does yours go down the middle of your stomach and then curve around your belly button? Still worried about getting a weird belly. I can deal with it being a little deformed looking, I just don't want it to look like I'm 5 months preggo all the time.
Boy, I often feel the SAME WAY about my life. I feel like, well crap, this isn't at all how I wanted my life to be. I only had one shot at this, and I wanted to do so many things, but I couldn't, because I was sick. And I get F*ck*ing DOWN about that sometimes. Like my life has just been wasted. How many hours have been spent laying around in bed waiting to feel better? Or how many times have I not been able to do something, or had to cancel plans, or would rather do something 'low key' when I was mentally ready to do something def not low key, all because of my health? It kind of feels like... well, I have thirty years into this lifestyle, how can I just give up on it? What am I going to do when I have nothing to take care of anymore? It feels like I've done this for SO LONG that it's not fair that all the sudden, poof, now I don't have to. Very hard to explain that one. For a long tome, I was angry with my endo and any other doc that would try and tell me things about 'taking care of diabetes so blah blah doesn't happen,' and this was because of a lot of personal research I did. Doctors tell you that if you take very good care of your diabetes, you won't get x,y,and z complication. CKD, all forms of neuropathy, etc. The truth is, that all diabetics get these things. It happens to all of us. Don't tell me that I won't get retinopathy if I keep my HbA1c at 6 my whole life. I've read article after article about these problems affecting ALL diabetics. The only difference is, when. I just wish that, at some point when I was younger, one of my (many) doctors would have just told me this truth.
I've got another question for you- as opposed to the kidney part of the transplant, how did the pancreas tx change your life, other than not having to manage sugar levels? I mean... All right, so I get extremely nauseous really easy when I eat, because of my bloodsugars fluctuating. Not even large amounts. If my count goes from 100 to 185, I feel like shit. Or if it goes something as small as 100 to 150 very fast, it will also make me feel awful. So I don't know what it's like to eat a real carby or a larger meal without feeling awful afterward. I assume that'll change. What were some of the ways the new pancreas changed life for you that you didn't expect, because you were so used to it? Also, did you get a living kidney donor, and if so, how did that work to get a living donor for the kidney but the cadaver pancreas? (There, now I wrote you a book!)

Simon Dog, you bring up a very valid argument...

Cupcake: I should look into those! Though I will admit, a scar will be cool. I can tell stories about it, like 'they thought I was dead so they started an autopsy." or "desert storm." I didn't know that about toxemia, I'll keep that in mind if I get the tx and find a donor. Ireland sounds great! I bet that's going to be a blast! My dad and I decided we'd take a road trip we'd been planning after I heal from the surgery, if I get it. First stop would be his old band mates' place (they own a concert hall on their property) and then to a bunch of other places along the East coast to visit other spots he played, and people he played with when he traveled. I'll check for that book! Thanks for telling me about it!

Oh for Pete sake..

Reading some of theses comments really cause a person's eyes to roll. If you do not want to be on the list then don't bother. Don't get the damn kidney. There are thousands of people who do want the kidney. I will tell you something you go into a transplant center expressing some of the feelings posted here YOU WILL NOT BE PLACED ON THE LIST. Transplant centers do not want people with  that sense of attitude. Like I said before it is a privilege and you are expected to take very good care of this privilege. Don't be like yea I got one and I do not care about it anymore........ Kind of like being selfish.......


Hey, thanks for rolling your eyes at us.  That's the most helpful kind of attitude when dealing with a horrible illness that makes you feel alone and emotional. I am on no list, yet. My decision, in the end, will come down to logic, and UkranianTracksuit is right- just because I don't want a tx right now does not mean I will not take care of it later. And this is my life. Everyone, EVERYONE, has every right to feel how they feel, and more importantly, take the time they need to come to terms with how they feel. If that means flip flopping a million times before they decide to go for a transplant, then so be it. If you are not at peace with having a tx, even if the end result is something you want and you are just afraid to go through the journey to get there, then how DO you expect to be able to take care of the new kidney afterward? Anyway, thanks for the great advice, buddy.  :cheer:
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UkrainianTracksuit
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« Reply #19 on: December 17, 2018, 06:10:13 AM »

One of the worst things my parents told me about my coma experience was that I flailed too. The hospital’s solution was to tie down my arms and legs. Yeah. So, when I heard that and know how uncomfortable I get when constricted, not a very pretty picture mentally. As I result, I get you. Really.

Ease your mind knowing ICU post-tx isn’t the same as “regular ICU” in that you are there for monitoring rather than outright care. It’s only a short while and then you’re moved to the main transplant floor. It surprises me all the time when people go for a kidney transplant and they are texting from the recovery room to say “all’s good!” and meanwhile, I missed that experience!

Does yours go down the middle of your stomach and then curve around your belly button?

My scar is slightly to the left of my belly button, mostly straight, curves a wee bit around the belly button, curves back to a straight line again and does straight down. You’re right: some of the other K/P scars out there look wildly different but this one is mostly simple.

Again, not to scare you, but in my case, they had to re-open it up, to clean it and an abscess out. This does not happen often but it was kind of expected with my MRSA positive status. So, my scar got a bit longer into my “vadge zone”. You won’t look 5 months preggo at all. Maybe just a “just starting to show” baby bump!



Know I understand you completely on how you feel in regard to life and how doctors handle young T1D patients. I started my diabetes care in another system (Russia) and all they did was put dread into me, “you are going to lose your feet! you are going to go blind! you are going to have a heart attack!” Keep in mind, I was a small child to hear all of this since their “informational pamphlets” were geared towards more sober adult parents. So, it got drilled to have good HbA1C’s, to the point it became an anxiety, before every appointment. 

As an aside, I was very lucky to have regular insulin shots, because so many patients like me couldn’t get it. They rationed out their insulin to make it last so (sadly) there were many Type 1 diabetics on dialysis with me when I did in center at home. Were they bad patients? No. It was a shitty disease, a badly managed system and the luck of the draw of life.

Later on, when I reached my late teens, a doctor finally was blunt and told me some advice. He had managed patients that barely looked after themselves and put off complications than longer than expected. And he had patients that watched their glucose levels meticulously and ended up with so many complications. So, you’re right, it happens to all of us at different times. There are cases of people that have put off complications for decades but when you look at their extremist treatment regimen, life isn’t really worth it. When it gets to the point of eating the same 2 lettuce leaves with same “measured to the gram” small piece of salmon and water, I think I’d turn myself in for shark food.

I’ve been blessed with a transplant, of which I am super grateful, but it doesn’t negate my life was directed by illness. Decisions over where to go to school and what to study were major. Did I really want a PhD in economics? No. I wanted to be studying forests in the taiga. But needing to be close to doctors, and later dialysis, meant this was a no go. Even with transplant now, so many of my colleagues are working overseas or organizing microfinance projects in strange places. Yet, here I am! So much wasted time and wasted life...



But while life may not be what we want, it’s what we do with what we have, right? So, with a transplant, you’ll be allowed to do things that may have been restricted or off the agenda before. Sometimes it’s cool to make a post-tx bucket list and you slowly check off. And thank your donor in each place! With so much bad stuff randomly happening to random people, terrible illnesses, and wars out there, and just general violence, I learned to be grateful for what I do have (a body that mostly works) and the ability to live in security.

As for devoting time for medical needs and then it being gone, it’s VERY tough in the beginning. But after a while, you get into a new rhythm, and any feelings like that slowly diminish. Sometimes I get tongue tied thinking my whole life revolved around a close, glucose meters, eating and injections... now, it’s gone. I’m still working on this.... but it does get easier.

How did the pancreas tx change your life, other than not having to manage sugar levels?

It changed my life in that I generally “feel better.” Like you, I felt quite sick when my glucose moved around like that, pre and post eating. After tx, I still can’t eat a lot because I feel full a lot faster but I don’t feel gross like you described (due to fluctuations).



What were some of the ways the new pancreas changed life for you that you didn't expect, because you were so used to it?
To be honest, the biggest change has been my sleeping and napping. I can do either now without considering glucose levels and having a snack. I tried to get a little higher level in the evening because it seems like I always tanked at night, and this became more prominent once on HD. These were serious tanks where the ambulance had to be called twice because I was convulsing. Other times I was in another world, unresponsive, but not a coma yet. So, now I sleep more regularly.

My husband sleeps much better too because he no longer checks on me. And to be honest, it was rather embarassing to explain, “oh so, I’m diabetic too (I had a chest cath when he met me, so he knew the dialysis aspect.... he still asks himself wtf is he doing with me daily..) and I get low blood sugar sometimes. So, I’m going to keep candy in your drawers here.” when I started spending the night at his place.

Another unexpected change is dental. I go to the dentist for regular cleanings and whatnot but I always had this “sticky saliva”. The hygienist noted that diabetics had a higher glucose content in their saliva so that was probably the cause. Post tx, this is gone.

One last change is social. I was so used to saying no to foods or experiences because of my Type 1. Just to be able to say “yes” now from time to time is a really big deal. I didn’t realize how abnormal I was in this regard. Such as during Christmas shopping, at a chocolatier, my husband was in the process of buying his usual stuff. The lady asked if I wanted anything, any samples, and I was so used to saying no... but now, I could say yes. I got a little flabbergasted though and had to explain.

Also, did you get a living kidney donor, and if so, how did that work to get a living donor for the kidney but the cadaver pancreas?
No, I did not get a living donor for a kidney. It was futile so I gave up. People are rude, let’s just say that.

In the beginning, I planned to be listed only for a kidney but the tx team offered the SPK option. So, I did additional testing for that and went right on the cadaver list. I am so so so grateful they made the offer!

People DO receive a deceased donor pancreas after a live kidney donation. There is a member here whose husband went through that process and they could give better information than me. But it works!



There, another book.... there is just so much to share. Hahahaha...  :2thumbsup;
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Simon Dog
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« Reply #20 on: December 17, 2018, 06:32:37 AM »

My scar is curved and starts a couple of inches above my junk and runs to the same level as the navel, terminating about 6" to the right of the navel.   I think it looks really good.
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« Reply #21 on: December 17, 2018, 06:54:04 AM »

My scar is curved and starts a couple of inches above my junk and runs to the same level as the navel, terminating about 6" to the right of the navel.   I think it looks really good.

That sounds about the same area as mine.  Now a year and a half out it blends into the chest hair.  My stretch marks of high prednisone use in the 1990's and then fast weight loss are much more visible as those are more to my side and out of the chest hair.
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Transplant July 2017 from out of state deceased donor, waited three weeks the creatine to fall into expected range, dialysis December 2013 - July 2017.

Well on dialysis I traveled a lot and posted about international trips in the Dialysis: Traveling Tips and Stories section.
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« Reply #22 on: December 17, 2018, 08:30:03 AM »


Hey, thanks for rolling your eyes at us.  That's the most helpful kind of attitude when dealing with a horrible illness that makes you feel alone and emotional. I am on no list, yet. My decision, in the end, will come down to logic, and UkranianTracksuit is right- just because I don't want a tx right now does not mean I will not take care of it later. And this is my life. Everyone, EVERYONE, has every right to feel how they feel, and more importantly, take the time they need to come to terms with how they feel. If that means flip flopping a million times before they decide to go for a transplant, then so be it. If you are not at peace with having a tx, even if the end result is something you want and you are just afraid to go through the journey to get there, then how DO you expect to be able to take care of the new kidney afterward? Anyway, thanks for the great advice, buddy.  :cheer:

KeenString you are so funny.  I have to say it is more a realistic attitude than a helpful attitude. You are welcome never the less. The logic is this. If you have the option of getting a transplant but elect not to then you cannot complain about Dialysis. Transplant or artificial kidney implant is the solution. Dialysis is a stop gap and really is not meant to be life long though medical people tend to look at it as lifelong because if you cannot get listed then that is the only choice right now.... If the decision of getting a used kidney bothers you then perhaps go to therapy and talk to the magic eightball. My view on it is there is a high demand for the organ and why should the organs be cremated or buried when they could be used again for someone who needs it. I would not have second thoughts about getting a transplant.  It is a solution. I think we would have some pretty good debates over a cup of hot tea.

Ken
 

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« Reply #23 on: December 20, 2018, 08:09:41 PM »

UkranianTracksuit, they did the same to me as well, with the restrains. I was in and out of consciousness and didn't understand what was happening at all, so I started screaming and thrashing worse. At one point I got out of them and the ICU nurse tackled me. That was one of the things that, in hindsight, had to be pretty funny. But at the time, it was NOT. All 100 lb of me noodling my way out of restraints and being tackled by a nurse. One of the things I keep telling myself is that, if I DON'T get the tx, the risk of an event like that happening to me again is greater and greater, and I think I'd rather go through the transplant than go through possibly multiple episodes of that again. Thank you SO much for taking the time to answer my questions! I'm so new to this, and I can't tell you how much this has helped to ease my mind. How about anti rejection meds? Do you mind if I ask what ones you take and if you notice any side effects? The ones that the surgeons at Miami Transplant Institute said they use are Prograf, Myfortic, and Rapamune. I've never heard of Rapamune, and I don't know of anyone taking it. I don't know if that means they'll use Prednisone, but I'm terrified of that drug, and I absolutely don't want to be on it, even for a small amount of time when I come out of surgery.

Iolaire/Simon Dog, I saw some scars on Google that were healed for several years, and they looked pretty cool. I had a friend suggest that I get a cover up tattoo for it, but I told her I liked scars, and if I got a tattoo for it, i'd probably get the word "Oops" tattooed very small next to it.
...But yeah, my chest hair will probably cover it up, too.  ;D

Mr Ken, I can absolutely complain about dialysis. But you're right. The solution is, if you don't like dialysis, then get the transplant. Aaaaand I'm going to go kicking and screaming and I'll be miserable and hate every second of it until things once again return back to as normal as they can be. I'll get over it, and I'll get used to the changes, and I'll keep living my life, and take care of that kidney/pancreas until I need new ones. That's pretty much my pattern. Right now my logical side is fighting with my emotional side. I completely agree with you that organs shouldn't be cremated or buried and given to those who need them. I also know that I am one of those people who needs organs, because I can't stay on dialysis for the rest of my life. In the long run, I know I would hate being on dialysis long term than going through the perhaps half year of absolute suck from the tx and recovery. I'm just trying to be okay with it. It's just damn hard. 
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« Reply #24 on: December 20, 2018, 10:14:55 PM »

Quote
I absolutely don't want to be on it, even for a small amount of time when I come out of surgery.
Chances are pretty good you'll get solu-medrol (IV prednisone) during surgery and immediately thereafter.  In my case is was 750 then 500.
Quote
I know I would hate being on dialysis long term than going through the perhaps half year of absolute suck from the tx and recovery
Nowhere near a half year suck if things go well.  I had a bit of soreness until 2 months out, but things did not really suck.  After about a month life was better than on dialysis.   I am 3.5 months out and just had an interview for a full-time job yesterday, and could start tomorrow if they were to make an offer.   I graduated from "wear a mask in public" to "wear a mask in heavy threat zones like hospitals and around sick people" at 3 months.
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