Searching's Son and his need for an organ transplant

[jen3560]

Searching - I felt as lost, confused and scared as I'm sure you're feeling now. 

I wound up doing most of my own research online - and I also utilized a wonderful resource - our insurance provider has a group of people out there to help you who are specific to transplants.  Definitely call your provider to see if they offer something similar.

One thing I learned was get him evaluated EARLY for the transplant list.

Another very important thing I learned - YOU have to be extremely proactive in the management of all of this - the doctors won't do it for you.

The more you can inform yourself - the better chances your son will have of getting a transplant.

One other highly important thing - have your son sign a Medical Power of Attorney.  Have him assign that Power to someone who will always be nearby.  That someone will be the person who will legally be able to make medical decisions for him, if he gets to a place where he cannot make them for himself.

that person will also be the person the doctors will more readily communicate with.

[Searching]

Searching - I can identify with exactly what your family and your son are going through.  I do have extensive experience regarding organ transplant - due to a transplant a family member received.

PLEASE do not hesitate to ask me anything you're unsure of, or want more information about.

For both pre-transplant, care giving planning, and post-transplant.

My heart is with you!!

Thank you Jen. I am a bit confused as to why the doctor said because my son is O- it would be nearly impossible to find a matching donor due to the kidney/filtering of the blood...we were NOT told that before, so I am at a loss... I hit my knees..was not expecting to hear that. does the blood/kidney relation make sense to you as what the doc said??

No it doesn't.

Tissue and blood are certainly different animals - but the Rh factor means what protien your blood does, or does not carry = + or -.

While my knowledge is not kidney specific, I did find this for you:

Four major blood types are found in humans: A, B, AB, and O. Another component associated with blood type
is a protein called the Rh factor because it was first discovered in the Rhesus monkey. If this factor is present in a person’s blood, the blood is said to be Rh positive (Rh+). Conversely, when this factor is absent, the blood is Rh negative (Rh–). This is why blood types are referred to as A+ or A–. While Rh factor is an important component to consider in matching donor and recipient for blood transfusions, Rh factor is not involved in matching donors and recipients in kidney transplantation.

http://organdonor.gov/student/docs/OrganDonor-Biology.pdf

   I think it is time for a new nephrologist.

[jen3560]

DEFINITELY!!!!

Call his insurance provider, and let them give you the names of the nephrologist(s) that are members of the transplant team at your local hospital.

[jen3560]

Have you thought about Live donation?

[Searching]

DEFINITELY!!!!

Call his insurance provider, and let them give you the names of the nephrologist(s) that are members of the transplant team at your local hospital.

Any hope he had had was dashed by his current nephrologist,he even refuses to wear his medic alert bracelet because he said it would not matter anyway because him getting a kidney is slim to none chances, where as before,he had so much hope. He has been evaluated and put on the list, he was put on at birth and re-evaluated every 6 months. After the incident a while back,he was re-evaluated and according to nephrologist, "moved up" on the list,not that I understand that either. I am lost with this,though it has been something I have been going thru since his birth, this stuff coming up now is new to me and I guess it is coming up due to the damage to his kidney. The person was already charged and did time,but to me,with this now,not enough time was served. He did 6 months for what damage he has caused to my son. He knew he only had that one kidney and that was the reason for the repeated blows to the kidney,so no,6 months was not nearly enough. JMO
I am going to get him to a different nephrologist because it seems this one is telling wrong for whatever reason.

[Searching]

Have you thought about Live donation?

yes, we thought of that. guess it is something that will have to be discussed with the new nephrologist when I find one because his said neither of us parents would likely be a match.. I am O+ and his father is A-, but since the blood has nothing to do with it,guess we need to re-evaluate that option.

[jen3560]

DEFINITELY!!!!

Call his insurance provider, and let them give you the names of the nephrologist(s) that are members of the transplant team at your local hospital.

Any hope he had had was dashed by his current nephrologist,he even refuses to wear his medic alert bracelet because he said it would not matter anyway because him getting a kidney is slim to none chances, where as before,he had so much hope. He has been evaluated and put on the list, he was put on at birth and re-evaluated every 6 months. After the incident a while back,he was re-evaluated and according to nephrologist, "moved up" on the list,not that I understand that either. I am lost with this,though it has been something I have been going thru since his birth, this stuff coming up now is new to me and I guess it is coming up due to the damage to his kidney. The person was already charged and did time,but to me,with this now,not enough time was served. He did 6 months for what damage he has caused to my son. He knew he only had that one kidney and that was the reason for the repeated blows to the kidney,so no,6 months was not nearly enough. JMO
I am going to get him to a different nephrologist because it seems this one is telling wrong for whatever reason.

I can certainly understand his frustration - and the anger at the person who did this to him.  In your shoes, I would likely go back to the DA and ask him to press attempted murder charges.  Since he did this with knowledge of the situation, and malice aforethought with your son's condition in mind.  Take something from the current doctor with you to the DA.

The one thing your son cannot do is give up hope - as I'm sure you all know after dealing with the evaluations for so long.  Good mental health is a very important part of the criteria in someone's continuation on the transplant list.

But seriously consider the Live donation possibility - your son got his blood type from either you or his dad.  So one of you has the same type.  Possibly also any siblings.

[jen3560]

Have you thought about Live donation?

yes, we thought of that. guess it is something that will have to be discussed with the new nephrologist when I find one because his said neither of us parents would likely be a match.. I am O+ and his father is A-, but since the blood has nothing to do with it,guess we need to re-evaluate that option.

Oh, gotcha.  Yes - then from what I understand, you would be a candidate for a possible tissue match for donation purposes.

There are tissue antigens to be considered, just not the Rh factor.

[Fanny Mae]

Looks like you are getting some really good advise about a subject that I do not have much input. Let these good people responding to you help you in your and your son's decisions. Medical science has some wonderful people and solutions that we never could imagine. I believe in miracles! ((Hugs))

[Sassycat]

Searching - You and your family will be in my prayers.   I pray you will find the right medical team, also.  Hugs.

[Dolce]

Searching, I posted this earlier over in the Musings thread when Muffy brought the link for this thread over.  I am reposting now that I read your son is in need of a kidney.

One of my younger sisters lived the first 4 years of her life on dialisis in a childrens hospital due to being born without kidneys.  She received her kidney from a young man who parished in a car accident.  The waiting and not knowing are the hardest part of this, and that is just the first hurdle in this journey.  She has now lived way past what was expected, and is 12, but limited on what she can and can not do.

Searching my prayers do go out to you and your family, and will continue even after a donor has been found. 

[Dolce]

Searching, just wanted to add....the best advice that we ever received from a doctor was to never take just one doctors opinion.
Also, we were instructed to register at the 2 largest childrens hospitals within Florida as it would give better chances.

[Searching]

Searching, I posted this earlier over in the Musings thread when Muffy brought the link for this thread over.  I am reposting now that I read your son is in need of a kidney.

One of my younger sisters lived the first 4 years of her life on dialisis in a childrens hospital due to being born without kidneys.  She received her kidney from a young man who parished in a car accident.  The waiting and not knowing are the hardest part of this, and that is just the first hurdle in this journey.  She has now lived way past what was expected, and is 12, but limited on what she can and can not do.

Searching my prayers do go out to you and your family, and will continue even after a donor has been found. 

Thank you Dolce, all the information I am getting here gives hope. He was left with the impression dialysis would only sustain him a week or two if his kidney completely failed. This is all very helpful and I will be showing this to him so that maybe he will regain his hope and the fight for life he use to have.

[Dolce]

Thank you Dolce, all the information I am getting here gives hope. He was left with the impression dialysis would only sustain him a week or two if his kidney completely failed. This is all very helpful and I will be showing this to him so that maybe he will regain his hope and the fight for life he use to have.

A few weeks is what they told him???  That is not correct, granted my sister was a new born and was/is very very small for her age, but by the time she was 4 she was the size of a 3 y/o and that dialisis machine was her saving grace.
I am with Jenn about being suspect of this doctor saying he is putting off giving him a kidney until he is in dire need, that is just outrageous!
Your son needs to fight for his life, I watch my sister do it, I know it can be done.  He has options, he needs to get a hold of a doctor who is going to help explore all of those options with him.
Please let him know I will be praying for him and sending well wishes his way.  He can do this, he has one determined Mama behind him.

[Blumonkey]

Prayers for you and your son,Searching. Do find a nephrologist that will be your partner in this issue. I know this is difficult for you and that you would change places with him  in a heartbeat if you could.

[can]

Searching I am so glad you came forward and have found so many knowledgeable Monkeys.  I'm sure it will help you gain strength for the fight
ahead. 
It's heartbreaking to hear your boy has lost hope.  I'm sure that is temporary.
I have no wise advise to offer, but do offer prayers and blessing for you and your son.
can.

[Searching]

Searching I am so glad you came forward and have found so many knowledgeable Monkeys.  I'm sure it will help you gain strength for the fight
ahead. 
It's heartbreaking to hear your boy has lost hope.  I'm sure that is temporary.
I have no wise advise to offer, but do offer prayers and blessing for you and your son.
can.

I am glad as well. I have gotten more information from my monkey family then I have from the doctor. I have also regained hope as well. Thank you all.

[Searching]

Thank you Dolce, all the information I am getting here gives hope. He was left with the impression dialysis would only sustain him a week or two if his kidney completely failed. This is all very helpful and I will be showing this to him so that maybe he will regain his hope and the fight for life he use to have.

A few weeks is what they told him???  That is not correct, granted my sister was a new born and was/is very very small for her age, but by the time she was 4 she was the size of a 3 y/o and that dialisis machine was her saving grace.
I am with Jenn about being suspect of this doctor saying he is putting off giving him a kidney until he is in dire need, that is just outrageous!
Your son needs to fight for his life, I watch my sister do it, I know it can be done.  He has options, he needs to get a hold of a doctor who is going to help explore all of those options with him.
Please let him know I will be praying for him and sending well wishes his way.  He can do this, he has one determined Mama behind him.

Thank you Dolce . I will be letting him read all this so that he may have a better understanding and further knowledge.I am praying it will give him strength and hope back. Thank you so much, everyone.

[4getUnot]

Dear Searching,
I don't know you well but we do share the bond of motherhood.  My oldest son had a cancerous tumor several years ago at the tender age of 17.  Like you we cried and prayed.  I thank God for giving us a miracle because today my son is healthy, active and fully recovered.  At the time we were going through that I told my son to remember that a diagnoses doesn't change the number of your days.  God's in control of that!!!  Please know I feel for you and I understand what you are going through and I will keep you both in my prayers and in my heart...

[mizjay]

 SEARCHING   just came to give a hug, see how you are....           hoping all is well