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Author Topic: I don't even want it.  (Read 1861 times)
UkrainianTracksuit
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« Reply #25 on: December 21, 2018, 05:06:53 AM »

You are spot on in thinking that if you don't go through the K/P that your chances of "another scary round" are higher. Before K/P became "more common", they were mostly done with those that had uncontrollable highs or dangerous lows, so as to avoid these coma scenarios. Having a transplant has its own set of difficulties, that we never know if/when will happen, but your view now is a good way of looking at it.

How about anti rejection meds? Do you mind if I ask what ones you take and if you notice any side effects?
As of right now, all I take is Myfortic and Advagraf (the 24 hour duration version of Prograf). My tx hospital follows one of those "steroid free immunosuppression protocols" so I was completely weened off Prednisone a few months ago. So far, so good.

When I took prednisone, I was on the maintenance dose of 5 mg and that caused no side effects. Higher doses caused a bunch of dumb things. Other than that, no side effects whatsoever. I worried ahead of time over nausea, since I have a sensitive stomach, and that's been fine too. I take less pills post-tx than I did in Stages 3/4 and on dialysis. And hey, no problem about the questions.  :)

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KeenString
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« Reply #26 on: December 21, 2018, 06:27:08 PM »

I'm going off my track record of nothing ever going smoothly for me. I'm not trying to speak things into existence, I'm just being realistic. Example, the surgery to place my pd cath was  supposed to be a 'piece of cake.' Not only was I horrifically sick recovering from the first surgery, but my omentum wrapped around the end of the catheter and I had to have another surgery to remove it. The second surgery was also pretty rough on me, and now the cath sits up against an ovary or something in the ovary area and it feels like I have bad ovulation cramps around the clock, all the time. Another example, my nephro said that dialysis would make me feel better, but thus far I feel awful every time I do therapy. They still can't figure this one out. I mean, it is what it is, I've just learned to expect the worst. "This will help you" but then it doesn't, or something goes wrong. That's my reasoning for giving it six months, rather than three. Gotta plan for the inevitable!

Congrats on the progress! I hope you get the job! I work in an ER, I'm terrified they'll tell me I have to find a different career, because I LOVE my job.

I'm a little worried... how do I explain that I don't want prednisone to play a part in the tx?

I have an extremely sensitive stomach, so these meds making me nauseous is a concern of mine. I'm also plagued with chronic migraines, which make me throw up a LOT, so I'm not sure how I'm supposed to keep up with them when I'm in a migraine cycle.
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Simon Dog
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« Reply #27 on: December 21, 2018, 06:58:51 PM »

Quote
How about anti rejection meds? Do you mind if I ask what ones you take and if you notice any side effects?
Not sure who you were asking, but my answers:

- Celcept 500mg BID (reduced from 1000 due to low WBC)
- Prograf 1.5mg BID
- No prednisone
- Senispar 30mg QD (hyperparathyroidism can persist in long term D patients after xplant)

Side effects:

- Parathesia in right hand for a few weeks.  Had almost totally subsided

- Bilateral pedal edema, worse on right (xplant) side.  MD says it seems to be slowly getting better.  Had an echo and 3 ultrasounds to rule out clots.   MD avoiding contrast CT because he does not want to abuse the kidney with contrast dye and possibly beat on it with contrast induced neuropathy.

- Extreme cost of Sensipar.   #180 cost over $6000.  Fortunately my insurance covered it with a $75 copay.

- Not having to organize my life around dialysis treatments.

Quote
I'm a little worried... how do I explain that I don't want prednisone to play a part in the tx?
If you want to keep the kidney, you may have to accept it in and right after surgery, but should be able to go home without it.  I went home with one 15mg dose to take the day after discharge and that was it.
« Last Edit: December 21, 2018, 07:01:37 PM by Simon Dog » Logged
KeenString
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« Reply #28 on: December 21, 2018, 07:12:24 PM »

Rapamune must be a new one, because I swear, even the ER doctors I work with don't know what it is. I was on a low dose of Prednisone a long time ago, and it gave me violent mood swings, among some other problems. My doctor took me off of it, straight away. Thank you for sharing the meds/side effects with me! If I'm going to get this tx, I'd like to know what to expect!
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UkrainianTracksuit
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« Reply #29 on: December 22, 2018, 04:21:43 AM »

Rapamune is not exactly new. As a brand name for sirolimus, itís been out there for 20 years. It was included in my ďpossible medicationsĒ list in the pre-transplant information booklet.

So, itís included as part of a regimen with MMF (Myfortic in your case) and tacrolimus (Prograf). Sometimes, it is used on its own, if I remember the information correctly. Itís my understanding that since it has numerous side-effects that many tx centres moved away from including it in general post-tx immune suppression regimens. All in an attempt to streamline the medications for the patient and offer the best outcomes in regard to compliance/quality of life. If patients have issues with the other drugs (some have allergic reactions to either MMF or tac), sirolimus is often the main substitute.

Umm, what else.... itís not as hard on the kidneys as the other drugs and is known for its tumour fighting (or suppression?) It has other uses outside of transplant stuff. Rapamune was mentioned to me again, I think 6 months post-tx, as an option to switch over to if I wanted to get pregnant. I guess some studies are showing (half)-positive results. The other option is Imuran. (azathioprine)

If you really do not want prednisone, speak to the transplant team about their steroid-free immunosuppression planning. Express your concerns and see if they willl work with you that way. In my case, I started off with a high dose in hospital, went home at around 20 mg, and then tapered down to 5 mg. The 5 mg stayed for 6 months when I had my post-tx biopsy (all clear) and then started the weening off. (So as to let my body kick in with the natural processes again.)

But it's true: if you want the kidney, you are going to have to accept it during the surgery and a short while afterwards. That's just the way the process is done. I absolutely understand the concerns over it and violent mood swings. It made me absolutely crazy and short fused. Quite embarrassing, actually. 

Stomach issues: Be warned, pancreatic transplant causes severe nausea, at least for the first day you're awake. That was the worst part post-surgery but they doped me up back to sleep, and it was fine. The first week afterwards, after meals, I would get nauseated after meals. Nothing serious but very uncomfortable. Zofran solved it. Once things had time to "settle inside", nausea went away. A tx fellow had the nerve to tell me about the nausea AFTER the surgery, the hospitalization and in clinic. Thanks, buddy!

I understand what you mean in that you have expectations for things not to go according to normal plan. Same here. It happened with transplant and dumb little problems came up but it all evened out well. It's good that you are asking questions now and becoming informed!  :)
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Simon Dog
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« Reply #30 on: December 22, 2018, 06:57:04 AM »

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I guess some studies are showing (half)-positive results. The other option is Imuran. (azathioprine)
Another option is belatacept, which is given as a once monthly infusion, but it is an option only for EBV+ patients.
« Last Edit: December 22, 2018, 07:19:38 AM by Simon Dog » Logged
UkrainianTracksuit
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« Reply #31 on: December 22, 2018, 08:14:17 AM »

Another option is belatacept, which is given as a once monthly infusion, but it is an option only for EBV+ patients.
Yep, yep! Thatís true. Iím EBV- (donor cross match though) so not an option for me, sadly.
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gilders
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« Reply #32 on: December 22, 2018, 11:24:43 AM »

Keenstring, I totally understand your hesitation in opting for a transplant. Taking drugs that increase your risk of cancer and makes you much more susceptible to having a life-threatening infection, isn't something that many people can chose to do without having any reservations (no matter what the benefits may be). And that's before you beginning to consider the risks involved with surgery.

I should be having my transplant end of Feb/beginning of March. It's a live donation from my father. I could not possibly be any more grateful for this gift from my dad, but saying that I am excited or looking forward to the operation and the meds, would be a lie. Everyone is so excited and pleased for me. I have to put on a fake smile, especially to my dad. I would hate to be offering one of my organs to someone and for that person not to be happy and looking depressed about it.

I am 100% certain that I want this transplant as the other options are even worse. I am currently not on dialysis (dr wanted me on dialysis 18 months ago) and maybe if I was, I would be looking forward to the transplant.
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kristina
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« Reply #33 on: December 22, 2018, 12:18:00 PM »

Hello gilders,
Would it not be a good idea for you and your father to see a transplant-specialist and talk this over and tell him also about your own personal reservations and doubts?
It might clear the air much better and may give you some more information about the whole procedure, the risks involved etc.?
I wish you the best possible decision for yourself and your father.
... One important point of course is, that the donor would be your father and and you would have to take much less medication because of the possibility of a perfect match etc. and taking less medication makes life so much more easy.
Best wishes and seasonal greetings from Kristina. :grouphug;
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gilders
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« Reply #34 on: December 22, 2018, 02:36:41 PM »

Hi Kristina,
We started this transplant journey 3 years ago and Ive been well informed and also done my own research.
You would think that I'd need less meds as my donor is my dad, but I actually need more as I have antibodies against him. It was considered to join the paired/pooled donor programme, but as I have lots of antibodies from previous blood transfusions, it was unlikely we'd find a better match.
I have been on various immunosuppressive drugs (Cyclophosphamide, Rituximab, Azathioprine, prednisone, etc) for the majority of the last 24 years due to vasculitis  (Wegener's Granulomatosis ). The vasculitis specialist has said that he's happy for the transplant to go ahead and the medication will help to keep me in remission, BUT he is very concerned that due to many years of immunosuppression, I am at a far greater risk of a fatal infection than "regular" kidney recipients  (he said this even before hw knew I needed extra immunosuppression).

The operation itself poses an extra risk for me as I have an intermittent bleeding disorder. I have a platelet dysfunction and their only solution is a bit risky. They will give me platelets before the operation. But they don't know if my body will make these donor platelets dysfunctional, or if it's just the platelets that I produce are already dysfunctional.

I have considered my options and I'm EXTREMELY thankful I have options to chose from. I want to live as long as possible and statistically transplant would help me achieve this.

Thank you for your advice and wishes. I hope you have a happy, healthy Christmas and New Year.
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Simon Dog
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« Reply #35 on: December 23, 2018, 06:27:34 AM »

I have a platelet dysfunction and their only solution is a bit risky. They will give me platelets before the operation. But they don't know if my body will make these donor platelets dysfunctional, or if it's just the platelets that I produce are already dysfunctional.
Ask your MD about Nplate.   It's an exotic injection (about $1500 for 0.2cc) that stimulates platelet production.
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MooseMom
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« Reply #36 on: December 23, 2018, 08:26:34 AM »

Oooh, gilders, that all sounds very complicated.  I wish you well!
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gilders
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« Reply #37 on: December 23, 2018, 01:26:45 PM »

I have a platelet dysfunction and their only solution is a bit risky. They will give me platelets before the operation. But they don't know if my body will make these donor platelets dysfunctional, or if it's just the platelets that I produce are already dysfunctional.
Ask your MD about Nplate.   It's an exotic injection (about $1500 for 0.2cc) that stimulates platelet production.
Hi Simondog. I have enough platelets, it's just that they are dysfunctional  (i.e. don't work). Forcing my body to create more platelets will likely just introduce more dysfunctional ones. At least if I get someone else's healthy platelets they will do the correct job, unless my body somehow makes these donor platelets dysfunctional.
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justagirl2325
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« Reply #38 on: December 27, 2018, 10:25:26 AM »

Late to the discussion here.  My husband had the PAK transplant - kidney first from me, pancreas 10 months later from a deceased donor.  He was back to work 5 weeks after the kidney, and three weeks after the pancreas (construction).  His AIC pre pancreas transplant was 13 and post 5.  Perfect.  His kidney failure was caused by Type 1 diabetes.

He is on prednisone (7.5 soon to be 5  - his docs will leave him at 5 forever), 2.5 prograf twice a day, 360 myfortic twice a day and another really weird name pill every M-W-F (sulfa something).  His main side effect is that he has trouble sleeping through the night.  The prograf causes shakiness, it will be tapered off to 1 mg later, not yet. 

He wanted the SKP from the get go only to be told that his wait would be 7-10 years.  He decided to get listed and wait.  It was only after three near death experiences on hemo-dialysis that he agreed I could be tested to donate a kidney.  I was a match and it went very well.  After the kidney surgery pain he considered not getting the pancreas.  But after an episode of acute rejection (caught and stopped) he changed his mind - doc's explained that Type 1 diabetes took out his first kidneys and would eventually get the donated one too...so he decided to list himself and deal with it if/when call came.  Well he got listed on a Thursday and go the call the following Tuesday.  He went ahead with it (no time to think and stress?)

Not going to lie he had a lot of pain after the pancreas transplant - he had complications - you can see my separate thread - but here we are 3 months later and he is very glad he went ahead with both.
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UkrainianTracksuit
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« Reply #39 on: December 27, 2018, 01:21:58 PM »

So glad you replied, Just a Girl!

My HBA1C's were in the 6's prior to tx and I didn't have much complications so they said I was an unusual patient. However, the surgeon suggested the SPK due to the length of time having Type 1 and the "better quality of life" it offered. On the other hand, the team made mention of the fact that a pancreas tx would end up protecting the kidney and those with "kidney alone" + Type 1 have issues afterwards with control. (Prednisone and whatnot.) I am so glad that your husband is doing well and continues to thrive after the PAK!

It's funny though: I have the side-effect of staying asleep through the night as well. While I "sleep better" in general due to no more low glucose concerns, I sleep in 3 hour intervals and then, up at the wee hours to stay up for the rest of the day. Have his doctors suggested anything for this or is it simply the drugs?

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KeenString
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« Reply #40 on: January 09, 2019, 09:49:35 PM »

Hi everyone, and Happy New Year! Sorry I was away for a bit, things got complicated at work, and with my health situation, which in turn has changed my outlook on getting the tx a wee bit. (You reach a point where you get so sick that you'll do whatever it takes just to make it stop, right?) Gilders, you've got a lot more going on than I do, and I hope all goes well for you. Please keep us updated on your progress! Facing the whole situation is nothing short of daunting, and I feel the same. Whenever people hear that I'm able to get a transplant, I'm met with such joy and good feelings, and its so difficult because while everyone else is going "Oh that's wonderful I'm so happy!" my instant knee-jerk reaction is "Aw, sh*t, sonuvab*tch." (I actually have a funny story. Someone got me a necklace that says 'I can and I will' as an inspirational present. A closer friend of mine got me another one that said "Aw, F*ck" stating that that was more my style.  :rofl; )
Justagirl, I actually did read your husbands story. It was one of the first stories I read on here, and it was very helpful, so I have to thank you for sharing. My goal lately has been to focus more on the outcome, because there are so many things I want to do and accomplish that I can't do now, that I hope to be able to do if I get the transplants.
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jambo101
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« Reply #41 on: January 10, 2019, 04:00:51 AM »



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.


What did you do to alleviate the cramping?
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