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Long time TTF member 'Give Forward' funding for transplant!
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ErikS
Joined: 19 May 2005
Posts: 8287
Location: Slowing boiling over in the steamy south, Global Warming is real

1/5/16 4:43 PM

Long time TTF member 'Give Forward' funding for transplant!

So my daughter has been dealing with migraines, hypertension and kidney/urinary problems for a few years.

She finally has seen the right doctor.

Sad to say she has moderate to severe kidney failure due, most likely, to a strep infection when she was younger along with a poor gene pool on her mother's side (all my wife's family has kidney stones along with my wife).

She may need a transplant and her brothers have already stepped up with the goods if they match.

Take care of your health, you only have one life to live. Exercise, eat right etc. But I am preaching to the choir here.

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ErikS
Joined: 19 May 2005
Posts: 8287
Location: Slowing boiling over in the steamy south, Global Warming is real

4/12/16 6:40 PM

All,

I hesitate to share this because I have been absent from the forum for a while. Such is life. I have formed many friendships via CTTF and I know y'all understand.

My daughter was called by MUSC today and has been accepted for a transplant. She has her first appointment on 2Jun16 where they will do a work up, x-rays, etc.

Now the part that I am very hesitant to post, she needs financial help. She is medically covered but insurance does not cover everything. SO, the page at this link explains it.

expired link


Last edited by ErikS on 6/3/16 5:50 PM; edited 1 time in total

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Sparky
Joined: 08 Dec 2003
Posts: 15834
Location: Portland, OR

4/13/16 11:25 AM

Current renewal LINK: https://pages.giveforward.com/medical/page-j9h61d6/





EDIT: The first donation page expired so Erik had to re up the account, the new link is edited above over the original. The company does not do straight renews. The page has to be created again.

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ErikS
Joined: 19 May 2005
Posts: 8287
Location: Slowing boiling over in the steamy south, Global Warming is real

4/13/16 3:37 PM

All I can say to all of you.

Thank You. Every dime will be accounted for and open for all to see. I will ensure it goes exactly where it should. Right now, my daughter is concerned about both her and her husband's lost wages. He gets very little leave and she is one of those 38hr a week "part time" employees so she gets nothing if she is not at work.

So far this year they have hit around $7k in med bills from doctor visits and a 2 night stay in the hospital for a kidney biopsy. I expect the costs to skyrocket in June when she goes to MUSC. (Medical University of SC)

http://www.niddk.nih.gov/health-information/health-topics/kidney-disease/iga-nephropathy/Pages/facts.aspx

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PLee
Joined: 08 Dec 2003
Posts: 3504
Location: Brooklyn, NY

4/22/16 2:36 PM

$2300 raised so far. Pretty good, but a lot more is needed.

Bump!

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ErikS
Joined: 19 May 2005
Posts: 8287
Location: Slowing boiling over in the steamy south, Global Warming is real

4/22/16 5:38 PM

Quick update.

I have opened an independent checking account for the funds to be transferred to. The $2300 donated so far has been transferred to that account. As money is withdrawn I will share the numbers here. I am so concerned that people who donate understand how they are helping and exactly where there (your) money is going.

The people here have given around half, if not more of the money that has been raised. AMAZING group of people, and face to face, I have met just one of the bunch so far. Don't ever let anyone tell you, you can't have real friends without ever meeting them face to face. You are my friends, true as anyone I have ever met, maybe even truer.

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RCoapman
Joined: 09 Feb 2005
Posts: 4655
Location: Beervana

4/26/16 12:43 AM

Damn, I don't log in a lot any more but I'll def do something soon. So sorry to hear about this, Erik. Hope it all works out well and good for you and your family

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ErikS
Joined: 19 May 2005
Posts: 8287
Location: Slowing boiling over in the steamy south, Global Warming is real

4/26/16 1:15 PM

Thanks a TON Rob!! It already made it to the account. So far no expenditures.

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ErikS
Joined: 19 May 2005
Posts: 8287
Location: Slowing boiling over in the steamy south, Global Warming is real

5/14/16 4:17 PM

Update, 14MAY16

Lauren had a bit of scare this week. She was lethargic, her legs tingled and she stuck in a general malaise. Well ended up at the doc and blood work showed her potassium levels were very high. She has been eating healthier, and had increased her fruit intake a great deal, seems a bit to much for her body. The doc took blood and called her later that day without leaving any info. She made an attempt later in the dad to call, the office was closed. Seems the doc wanted her in the ER! Knot heads should have just said that in the message. She immediately went to have blood work done the next morning and her levels where back down. She is now having to restrict some fruits from her diet and was taken off a BP med that was working. Poor kid, I hope her migraines don't start back up. Ever since her BP got under control she has not had to fight them.

I will let everyone know how much I gave her for copays as soon as she gets the bill. I only feel it is fair to share with you where your money is going.

THANKS again to everyone! I am humbled.

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ErikS
Joined: 19 May 2005
Posts: 8287
Location: Slowing boiling over in the steamy south, Global Warming is real

5/18/16 4:29 AM

We received the largest donation so far. $500 was given in the last 2 days anonymously. WOW!!!

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ErikS
Joined: 19 May 2005
Posts: 8287
Location: Slowing boiling over in the steamy south, Global Warming is real

6/1/16 6:39 PM

Headed to MUSC in Charleston for Transplant appointment 1. Type matching, meeting with case workers and seeing the docs who do the work for the first time.

We are all really scared.

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Sparky
Joined: 08 Dec 2003
Posts: 15834
Location: Portland, OR

6/1/16 7:19 PM

"We are all really scared."

Nothing un-scary about it I bet!

Continued thoughts and prayers...

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ErikS
Joined: 19 May 2005
Posts: 8287
Location: Slowing boiling over in the steamy south, Global Warming is real

6/3/16 5:42 PM

All,

On 2 June, 2016 Lauren, Ed and I went to MUSC in Charleston to their transplant center for Laurenís first appoint with one of the premier centers in the nation. It went very well. The staff was fantastic, the presentations and workers who handled her case were thorough and compassionate.

Lauren had a number of tests done, most of it blood work for the screening process. They took 15 vials of blood! Even through this Lauren was a trooper. Those of you who know her know that she is a bit timid about needles, and as a vet tech it is comically ironic. She also had some X-rays done as part of the process. Lauren stated the instant digital X-ray was cool because she got to see her own body instantly.

So where do we go from here? MUSC has case worker who work with the insurance companies and even the emotional health of the patient and loved ones. There was not even a copay. MUSC wants the money to not be the patientís worries right now and did good job of addressing that during this visit. The astronomical cost of treatment is still there but we will cross that bridge when we come to it. Please continue to help financially as many of you have and as you see fit. https://pages.giveforward.com/medical/page-j9h61d6/ this is a new page because the first one expired and GiveForward does not renew the page, instead a new one is created. At this time the page has raised $3100 to help with medical related expenses and there have not yet been any expenditures.

Donít think money is the only way or even the best way for you to help. There is MUCH more you can do. We now have a way for you to enter your name and information into the MUSC database of people who have volunteered to donate one of your kidneys to her. Even if you arenít the correct blood type you can still donate and help her. It works like this, you may not match Lauren but you may match another person in need, one of the other personís donors donít match them but does match Lauren. So they do a two way swap, you donate to the other person and their person donates to Lauren. This is WIN for two people instead of just one! Go to this link and fill out the questionnaire. Make sure you enter Lauren Brown as the recipient. https://redcap.musc.edu/surveys/?s=JHY3JJMLT4
I filled it out yesterday and they sent me a personal email today.

Things are UPBEAT, MUSC was first rate and did a GREAT job.

Erik Singletary
erik.singletary@gmail.com

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ErikS
Joined: 19 May 2005
Posts: 8287
Location: Slowing boiling over in the steamy south, Global Warming is real

6/22/16 5:31 PM

All, Thank you SO much for your help. Just a heads up, $424.57 was paid from your donations to MUSC, Lauren's portion of her first visit there about 3 weeks ago. There are other bills she will need help with but those bills are from the local hospital and they require much closer scrutiny.


As you can tell my time has been well, occupied. I rarely have a chance to ride at lunch anymore, more responsibility at work equals more pay but hey that's life.

So in mornings at 0515, I have a torch in hand and off for a run I go. I get in about 5k every day, in the dark. At least it is cooler then.

I go later this week to have MY labs done to see if I am as good a match as the folks at MUSC think. If I am, I get a cat scan, MRI and X-rays at the hospital to ensure my kidneys are good and strong (on top of the lab work)

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ErikS
Joined: 19 May 2005
Posts: 8287
Location: Slowing boiling over in the steamy south, Global Warming is real

7/6/16 7:57 PM

Quick update while I am on holiday.

MUSC called and left a message today. I am a match and have to set up a 2 day physical with them when I get back. All my labs were good to go. One more hurdle so to speak.

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Sparky
Joined: 08 Dec 2003
Posts: 15834
Location: Portland, OR

7/6/16 8:01 PM

All that cycling and high fitness should pay off finally? ;)

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ErikS
Joined: 19 May 2005
Posts: 8287
Location: Slowing boiling over in the steamy south, Global Warming is real

7/7/16 4:26 AM

Actually. Yes. The nurse said my bp and HR was better than most 25 year olds. They say do it for yourself and your loved ones.

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ErikS
Joined: 19 May 2005
Posts: 8287
Location: Slowing boiling over in the steamy south, Global Warming is real

7/13/16 3:38 PM

update, 13 July 2016

So I misunderstood the message from MUSC. I am not technically a match, they have not done that test yet. It comes as part of the 2 day physical I will get on the 8-9 of August. Below is a excerpt from the email the case nurse sent me with the list of stuff a live donor goes through. I am researching now but most of appears to be kidney function testing and basic health like the EKG and chest X-rays.

I am most concerned about the psychiatrist. LOL they will confirm that I am nuts. And the pastor is gonna want to do a exorcism on me also.

Shit is fixin' to get real people!!!

The testing includes:

∑ A nuclear medicine GFR study with contrast that will calculate the donorís kidney function based on body surface area. (day 1)
∑ An EKG to record the heart rhythmóthis is required at evaluation and again at pre op. (day 2) (this is done in the transplant clinic)
∑ A chest x-rayóagain this is required at evaluation and again at pre op. (day 1)
∑ A CT scan with contrast to highlight the blood vessels (arteries and veins) so that we can chose the appropriate kidney for donation based on the technical approach the surgeon will take. (day 2óas long as the GFR study results are within normal range)
∑ An ultrasound to see the outside anatomy of the kidneys and surrounding structures. This is a non-invasive look that verifies that a donor in fact has two kidneys. :) (day 1)
∑ Several tubes of blood to be analyzed for infectious diseases, metabolic disorders, etc. *Also 4 of these tubes are used for the cross match. We want a negative cross match. If it is positive, we go into exchange or move on to another donor.


The consults will take place in clinic: (Rutledge Tower 9th floor, 2nd floor, and Main Hospital)

∑ Social worker
∑ Donor nurse coordinator (me)
∑ Donor surgeon
∑ Transplant nephrologist
∑ Dietitian
∑ Independent donor advocate Ė unbiased 3rd party, hospital chaplain to ensure the donor is not under any pressure or coercion
∑ Psychiatrist


I take the results of the testing and the consults to compile a report that I use to officially present the donor to our Selection Committee. Based on the data and consults, the committee will either approve or decline the donor. If declined, I move to the next donor. If approved, we discuss surgery dates if the cross match is negative. If the cross match is positive and you cannot donate directly to the intended recipient, then we utilize the exchange program which is the work around for incompatible pairs.

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ErikS
Joined: 19 May 2005
Posts: 8287
Location: Slowing boiling over in the steamy south, Global Warming is real

7/26/16 3:37 PM

update 26Jul16

Everyone who has donated. $2184.67 of your donations was used today to pay Lauren's copays for past doctors' visits and a hospital stay that was used to diagnose her condition. I will continue to update the Giveforward page to let you know how your donations are being put to use.
Thank you so much. As you can see she needs your help. Furthermore, I have an appointment at MUSC on the 8-9th of August to continue my testing to see if I can donate one of my kidney's to her. So far so good. Let's hope for the best. That does not mean that other people should not also be tested, Even though I am her father there is no guarantee that it will work out that I can give her one of mine. The more volunteers in the bucket the better. If you are able, volunteering to be a living donor is the greatest way to Giveforward.

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Tim123
Joined: 01 Apr 2004
Posts: 249
Location: Adelaide

8/8/16 2:57 AM

Good Luck with your appt. tomorrow, Erik

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ErikS
Joined: 19 May 2005
Posts: 8287
Location: Slowing boiling over in the steamy south, Global Warming is real

8/8/16 4:28 PM

Heads up everyone. Well it appears I passed all the tests today. The GFR took forever and they used some high dollar equipment to say the least. It looked almost like a CT scan. My stress test was not stressful, the nurse said to quit, no reason to go any longer after about 15 minutes. She laughed and said most patients don't last 5 mins. I had an ultrasound done and the tech laughed and said I had beautiful kidneys. She was kinda cute too. LOL.

The shrink confirmed I was nuts but it would not keep me from donating. I meet with the nephrology folks directly tomorrow.

The final word will come from the providers tomorrow and they will run the type match from labs they do in the morning.

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ErikS
Joined: 19 May 2005
Posts: 8287
Location: Slowing boiling over in the steamy south, Global Warming is real

8/9/16 3:44 PM

Day 2 of testing complete. I passed the tests, after 17 blood samples, a 3D CT, GFR, Ultrasound, Stress Test, 2 shrinks, 5 kidney docs, a neurologist, and 4 nurses of various types they have determined I am good to donate. I do have borderline hypertension so evidently a healthy weight and exercise can't prevent everything.

Thanks again for all that y'all have done for my daughter and family!!!

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Sparky
Joined: 08 Dec 2003
Posts: 15834
Location: Portland, OR

8/9/16 4:39 PM

"borderline hypertension so evidently a healthy weight and exercise can't prevent everything"

Imagine how far past borderline it could/would be without your fitness habits!

Nice to rear things are progress well.

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ErikS
Joined: 19 May 2005
Posts: 8287
Location: Slowing boiling over in the steamy south, Global Warming is real

8/24/16 4:08 PM

Redo on the BP test and more info

So I had a redo on the 24hr BP test, I laid off the salt and fatty foods for a week and did it again, stayed home from work also. I passed with flying colors, no hypertension, it was 90% white coat.

I also got a call from MUSC today and our type match came back perfect, I can do the hot swap directly to Lauren. Up until the results of the test were completed it was a assumption that we would match.

She had a few things to do at her doc's today and I have a few to do with my doc next week to prepare but we could be doing this thing in a few weeks. Holy shit this is scary.

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April
Joined: 13 Dec 2003
Posts: 6106
Location: Westchester/NYC

8/24/16 7:47 PM

Scary just reading about it. You're a brave man, Erik.

Best of luck with everything.

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