LIFE ON THE LIST

[okarol]

We wrote on the back of our cars and people would take a photo and tweet it. It got the attention of the local news and we had lots of people tested for Jenna. Good luck!
https://www.today.com/parents/los-angeles-mom-paints-car-search-kidney-donor-save-daughters-t48186

Does the program try to keep the people tested who don't match and pivot them to other transplant patients?  I'm just wondering.  It would nice if there was some program which could try to retain those possible donors and leverage them for other people.

There's actually a line that the coordinators have to be cautious of crossing so as not to be accused of influencing or persuading a donor to test for someone else. There was one sentence in the letter that potential donor's got, sent by the transplant team when they were found to be unsuitable for Jenna, that said that they could learn more about donating to someone else, but it was buried in the paragraph. We know that 3 people went on to donate after not being a match for Jenna, and another man will be donating to another young woman we know from facebook. Other people signed up for the National Kidney Registry to be matched in a pool. I believe our efforts helped a few people find donors. I wish more of them could donate.

[iolaire]

@okarol thanks for the details

[okarol]

 

[Tora66]

I need help. My daughter is interested in being a live donor forme. She has made several calls to my transplant center, but they have not responded. I called my transplant coordinator and she just told we have to contact the transplant team. They won’t answer! Why can’t she tell them? My daughter has already started testing by going to a local hospital. The coordinator says getting the test done won’t matter until the team takes action, I’m fed up! I’ve already decided to multi list and I’m getting documents together to get listed at an Idaho facility. It’s a shame I have to go so far because I live in the Tacoma/Seattle area.

[iolaire]

I need help. My daughter is interested in being a live donor forme. She has made several calls to my transplant center, but they have not responded. I called my transplant coordinator and she just told we have to contact the transplant team. They won’t answer!

That doesn't sound right.  Shouldn't your transplant coordinator help make this happen? Maybe ask your coordinator who handles complaints?  Ask if the hospital has an ombudsman or something like that?














Sp mod Cas

[SooMK]

Tora66--My center had the medical form that is required to be a donor downloadable on their website. Perhaps your center does too? That might be able to get things rolling since phone calls aren't getting anywhere. I hope things start happening for you soon!

[okarol]

I need help. My daughter is interested in being a live donor forme. She has made several calls to my transplant center, but they have not responded. I called my transplant coordinator and she just told we have to contact the transplant team. They won’t answer! Why can’t she tell them? My daughter has already started testing by going to a local hospital. The coordinator says getting the test done won’t matter until the team takes action, I’m fed up! I’ve already decided to multi list and I’m getting documents together to get listed at an Idaho facility. It’s a shame I have to go so far because I live in the Tacoma/Seattle area.

For Jenna's first transplant I waited months for them to call me back. It turns out they "were between coordinators" so our info sat on an empty desk. It makes me so mad still, because she went from pediatric to adult during that time and her status changed. I would call the director of that department and ask for help. Multi-listing is a good idea.

[charlesc]

I was transplanted 2 weeks ago with a cadaver kidney. I was on the list for one month short of 7 years.Fortunately I never had to go on dialysis, to me this was a HUGE deal as I did all and I mean all that I could to avoid Dialysis. I hasten to add that this is what I did and it worked for me, YMMV.
I followed the Renal Diet for 17 years doubling down on it for the 7 years on the list. In my estimation and that of several of my phsicians controlling my POTASIUM is what did the deal for me. For the 7 years on the list I requsted that a full Renal Panel be done EVERY MONTH and I would log the potasium ,
Creatinine, GFR, BUN, Anion Gap, PTH, and Phosporus in a spiral book with every visit to ever Dr. , telephone call and what occurred or was discussed.Also every med. taken start to finish. In other words all that was occuring. I cannot stress how useful this info was/is.
As soon as i received each test result I would compare to prior and determine what should be done. I would consult with my phy. and impliment the result.
THIS WAS MOSTLY DIET CHANGES.
The Renal diet is called the T diet for terrible but for me it was not. Just avoid the high pot. foods and if that is all there is just eat a very moderate amount.
All those years these foods just did not make it into our home, such as: potatoes, chips with potatoes, beans, citrus of any type, peanut butter, nuts of any type, cut way back on milk and milk products such as Ice cream, for me that my friends was a biggy but one does what one must to stay alive.
My wife was scruplous in picking out fruit drinks with low pot. NO dark sodas at all.
She watched canned goods with an eagle eye same with cold cerial, always corn based and no whole grains. To add a bit of taste to this I would on occasion sprinkle a bit of Raisin Bran to give a little body and taste but just a bit and always with minimum milk.
As my one kidney, lost one at 6 years old to a congenital problem in the ureter, declined in function over the period my nephrologist would constantly change and tweak the meds. a number of which were supplements and vitamins.
A few day befor I got THE CALL, my Creatinine was 6.5; GFR 7.6 (which put me about 4 months from failure at the rate of decline,Pot.5.4; Bun 79.
Phos 5.3 and the list goes on, I was on a phosporus binder and that helped.

When the call came at 7 am on Saturday, I did not ask many questions though I had researched them all over the years. I had high confidence in the hospital that I was using for the past 17 years taking care of my kidney. I did as if the donor was still alive, no he/she had flat lined and the organs were being kept alive by machine in the body. Asked if it was a good kidney and she said First Class.
I had been talking to them for so many years they knew my situation so I relied on their judgement, also knowing that this hospital ALWAYS TAKE THE MOST CONSERVATIVE APPROACH. Maybe sometime too conservative but that is a topic for another day.
They were harvesting both kidneys and the liver. We drove 120 miles to the hospital and all was ready for me, went directly to my room no registration, nothing and they started the testing, I was taken into the OR at 5:30 pm Sat. nt.
The kideny woke up very quickly and I now have nubers that I have not seen in over 20 years.
Will be in at home quarantine for 3 mos. with all my meds! They do a great job of training us for this period and provide all that we will require, even blood pressur mach, but of course we have one. We are in daily contact with the trans. team by smart phone to post my vitals and such and get changes in the meds.(changes are often made daily) I take about 50 pills per day at exact times. It is a LOT OF WORK, BOOKKEEPING for my wife.I hope that all of you have a VERY COMPETETENT PARTNER who is willing to engage in all of the grunt work.

The isolation is MANDATORY if you want to keep the organ working and not get infection. I actually know someone who did not abide by the protocals and died not long after the trans.with infection. I am on large doses of 3 anti rejection and anti infection  drugs so that is why the quarantine.I have posted a sign on my front door to this effect, it did not come from the hospital but from a freind who got a kidney AND a liver years ago and is doing great.

 After the surgury my wife brought a BANANA  to me and she took a pic. of me eating my first one in 17 years. Oh HAPPY DAY. Today I actually had banana pudding, wow.
Of couse if anyone has any question please let me know, as they say, been there done that. None may work for you but this worked for me.
Good luck and dont dispair.
CCC

p.s. In Louisiana there is an agency to which we will post a letter to the unknown donor family, the agency forwards to them and then the family may contact us if they wish. I would certainly like to thank them profusely for being so thoughtful and generous. It is just a shame that they lost a love one but , at least 3 are living as a result.

[iolaire]

Congratulations charlesc!

[charlesc]

When my wife read my post, she mentioned that I left out one important detail, I am 77 years old and otherwise in good health. We exercise regularly and have led our senior exercise class for years. Any thing to keep one strong, strong enough to tolerate the stress of ESRD and or dialysis on our bodies.
I have been blessed.
Good luck all and keep your eye on the prize.
CCC

[MooseMom]

What a thrilling post to read, charlesc.  At long last, you have a chance at a "normal life", although "normal" these days is anything but!

You've made a very important point by impressing how important it is to keep meticulous records.  I still have copies of my lab results from my very first encounter with my neph in 2003 which showed that my renal function had deteriorated since first being diagnosed with fsgs in 1992.

I had to follow the pre-renal diet you've described for 8 years, and yes, it is terrible.  All of those "healthy" foods are like poison to us.  Like you, I didn't have a potato or a banana or many other things for all of those years.  It always seemed odd to me that a small glass of red wine wasn't as potentially harmful as a small glass of milk.

The fact that you had worked so very hard to stay healthy and in good shape certainly has served you well! 

My heartiest congratulations to you AND to your wife.  Her life has been impacted, too, and she obviously played a huge role in making sure your diet was a renally healthy one.  That's a lot of hard work.

[SooMK]

I'm so glad you received your kidney and it's obvious it has found a good home. You are so fortunate to have someone who is such a supportive partner. I know you will treasure every re-discovered experience that your new kidney can offer. Enjoy!

[charlesc]

Since the transplant the pill taking has begun big time. 18-20 or so at 8 am more at 10 and 2 then another 18 or so at 8 with a few more in between.
That can get some difficult to swallow.
I recalled a suggestion by a Chinese friend who explained to me that Chinese usually drink hot tea with meals or warm water to aid in digestion.

I tried it and it works----like gang busters.So much easier to get them down. No more cold water for me. After I get the bunch down I will drink a full glass of water. I can actually feel them dissolving in my throat.

CCC

[Cupcake]

It gets easier and number of pills decreases somewhat over time. Best thing I did was get a 7 day pill sorter tower that has one tray per day, 4 time periods per day. At first it took me half an hour once a week to set up ( I think my brain was foggy from surgery/high dose of steroids at first) but now its just a few minutes. I count pills in each little square as I slide them into the tower so I know if I've missed any. That way only once a week do I need to really pay attention! And it was just too depressing to look at that shoebox full of pills, so in the closet it goes. Almost 2 years post transplant and I've only forgotten one dose and it wasn't an important one. Best of luck, you sound like you are doing great!

[iolaire]

I really like this pill organizer - which has 7 daily pill cases with four pill slots per day, much I bought another set this year for backup and so I can fill more than two weeks worth of pills at a time, but its now out of stock.
https://www.amazon.com/gp/product/B01N4IDOH6

This seems similar:
https://www.amazon.com/dp/B0189GHEDW/

I liked it because it had four slots per day and I could carry it with me when I went to work.  I used the larger pill cases for my early am and late pm pills.  Now that I'm down to 4 am / breakfast / 4pm pills I still use the cases for the breakfast and 4 pm pills as that covers the workday - I have breakfast at work, now at my desk at home.  Now I can put two days worth of pill into the four slots.  For the 4am pills I still have a single row pill case to hold those by the bed.  I've never really used the frame that holds all seven days, except for when I travel.  Now three years out I fill up two weeks of pill cases and keep them in a slider zip lock bag and bring what I need for the workday down to the desk each week.

For the longest time I used key envelops for my meds when I'm out and about, but I finally ran out of those and moved to these cheap plastic bags that will not last as long but clearly show what is in the bag:
https://www.amazon.com/gp/product/B001FVG5QQ

[MooseMom]

Yeah, the number of pills you have to swallow can be tiresome, especially in the first three months post tx.  Usually after that initial period, you can come off of a lot of them.

By the time you add vitamin and/or mineral supplements, those pill boxes get a'rattlin'!

And it's not like we necessarily have a lot of different medications, rather, we have to take them so often.  I mean, I take 3x1mg tac twice a day, so right there, that's 6 pills.

I've got all sorts of different kinds of pill boxes that I use depending upon my travel needs.  If I'm going out for the day, I just shove the whole day's worth into one of those little plastic bags you can buy in packets of 50.  After 8 years, I know what to take and when, and I recognize all of the pills, so I don't need four different bags for 4 times of the day.  I find these to be especially useful if I'm taking an overseas flight (not doing that much these days!).

I have several of those multi-colored pill "towers" that I use exclusively for summer hols because, well, because they look festive.  LOL!

Small price to pay, I think!

[Simon Dog]

I have one of these on my keychain with a two day supply of Tacro and Mycophenolate just in case I get stranded or don't make it home in time for my evening dose.  It's waterproof enough that the pills were perfectly dry after a wash/dry cycle, but I evacuated them to refuse disposal because of the heat that process subjected them to.   The case is sectional and I only use 2 of three so it's shorter than the size of the complete unit.

https://www.amazon.com/Portable-Opret-Compartment-Waterproof-Container/dp/B07D6KV6FV

The transplant pharmacist sent me home with a 7 day/4 compartment per day pill organizer so I can set up my dosages once a week, as well as tweezers for moving pills around.   The tweezers were an exact match for those in a disposable suture removal kit.

[charlesc]

Ochsner Hospital gave us a ton of supplies, including a 4 section 7 day pill box, that works well. I look forward to down sizing in the future!
A huge help is that they asked if we use a smart phone, we do. We get notifications at each hour that pills are due to be taken and in the mornings get a ping that "tasks are scheduled". That would be the vitals each am.
We can correspond with our co-ordinator either by phone or text very easily and also get all lab reports timely, usually the same day or the next. This is a huge help as I can adjust my diet quickly. After so many yrs. on THE DIET it is difficult for me to just eat! So when I eat previously forbidden fruit so to speak I still hesitate and then check my Renals!
The hospital portal is very good and we have been using it since it's establishment years ago. I can contact ever one of my physicians direct on it.
CCC
""

[kristina]

Since the transplant the pill taking has begun big time. 18-20 or so at 8 am more at 10 and 2 then another 18 or so at 8 with a few more in between.
That can get some difficult to swallow.
I recalled a suggestion by a Chinese friend who explained to me that Chinese usually drink hot tea with meals or warm water to aid in digestion.

I tried it and it works----like gang busters.So much easier to get them down. No more cold water for me. After I get the bunch down I will drink a full glass of water. I can actually feel them dissolving in my throat.

CCC

Hello charlesc and I congratulate you to your transplant ! May it be with you for many years to come !

.... But I do not understand the amount of medications you are taking? Are you actually telling us that you take 18-20 different pills at 8 am every day? And more pills at 10 am every day and 2 pm every day and then another 18 different pills at 8 pm every day and another few pills every day in between?

Do I understand that right and it is really true ? And if so, is it connected to your size etc.? And if not, what is it connected to? Sorry to ask, but I am completely startled about this huge amount of daily pill-intake and I can't really imagine that I have just read what is there in front of me to read?

Best wishes from Kristina.    

[charlesc]

Kristina,
 Not it is not that many DIFFERENT meds but one med may have 6 pills in the am and another 6 at nt. As I understand this is only to determine what dosage that I require, Multiply this metric by the number of meds drives up the total. I am not large, 180 lb and 6 ft. I would think that after we reach a plateau that the multiples of one med could be coalesced into one pill.

The second day after the TX the changes started, some days take a couple out or add another I am two weeks out and changes come about 2x/wk. Makes for a lot of work for my wife!
The kidney is working great but the meds are being adjusted to its function, thus the changes and my old kidney is functioning so that must be taken into account,
I estimate that my old kidney will last until December, did the math on that about 11 days before I got the call! My renals came in and I figured that out.
So I assume that when it fails there would be an adjustment in meds, that is just conjecture on my part. Need to add to my question list!

[rcjordan]

Based on the last couple of calls from the transplant team, I'm going to go on the list within the next few weeks.  I travel by car with my HHD fairly frequently, so my immediate question is "How far is too far?" if I get the call while out of town.  I've read here about temporarily suspending yourself from the list, but I would not want to push my luck in the beginning of The Wait.  I'm located 2 hours drive from the hospital and have read articles indicating that in my rural region 3 hours drive is fairly common.

[Simon Dog]

I got the call at about 5PM; transplanted at midnight.  The kidney had to be transported to the shop once I accepted the offer.

[rcjordan]

I was officially notified this morning that I'm now on The List.  I did remember to ask about suggested travel range. For this rural region, it is 4 hours maximum.

[iolaire]

I was officially notified this morning that I'm now on The List.  I did remember to ask about suggested travel range. For this rural region, it is 4 hours maximum.

Congratulations! 

[cassandra]

Fantastic news!!!


   


Lots of love, Cas