Hello

[FindingNeverland]

Hello, my name is Jami, I'm 26 years old and I'm facing kidney failure for the second time. My medical history is quite extensive actually. When I was three years old I was diagnosed with Neuroblastoma, back in 1987 they didn't know how to treat it so I was given large doses of full body radiation and harsh chemo therapy treatment, which did a lot of damage to my body including my kidneys. It wasn't until I was 16/17 when both my kidneys has completely failed. I had to go on dialysis while we searched for a donor, incredibly it turned out that I had two matches, two aunts. They discussed who wanted to donate first and nine years ago I received a kidney transplant. Sadly it has failed now. I am currently on hemodialysis and will be until they can put me on the transplant list, I have to wait six months because I had to sign a compliance contract that takes six months to adhere before they'll put me on it.



What happened this time is different though. Around mid November my significant other had the flu and when I started feeling ill we figured it was the flu as well. Then I started having nose bleeds, my general doctor said it was because I had weak membranes and the dry air was irritating my nose so they cauterized it. Just before Christmas I began feeling ill again and had trouble breathing. My general doctor took X-Rays and diagnosed me with pnemonia and prescribed me zithromax. It made me sick and was very unpleasant but I finished it just in time to enjoy Christmas but the next day my nose started bleeding again. I had it cauterized but the seal broke so they packed it with gauze which I had to leave in for three days. The day after New Years I had trouble breathing again so I went back to my general doctor and they had me do a nebulizer treatment in the office and some blood test was ordered. I was then sent on my way home thinking that I only need to nedbulizer treatments a few times a day to help clear up my pnemonia. The doctor's office called me soon after they let me go telling me to go straight to the emergency room because my CO2 was at a dangerous level, I'm basically hyperventalting myself. My mom came and got me asap, while I was sitting in the back room waiting to be hooked up to oxygen the doctor on call comes in and tells us that my oxygen level is fine, the CO2 level is up from renal failure. It's not pnemonia, it's edema. My creatnine was 17. Not to mention all my other levels were off the chart and since my kidney had not been working I had a severe build up of toxins in my body. Unfortunately the local area hospital has no dialysis unit so later that night I was taken to another hospital via ambulance and early that morning I was thrown into surgery to place an emergency dialysis catheter. I spent five days in intensive care on life support and another five in general care before being discharged. Had the signs been caught earlier we may have been able to save the kidney but there's no use crying over spilled milk.

 

[Chris]

That's a learning experience. Sounds like you needed to see your nephrologist or transplant center for second opinion. However hindsight is always 20/20. Your general doctor though knew you had a transplant and should have ordered simple blood test. Did your tx center not have you do monthly labs?.
 
I still findd it odd even after all these years how doctors are different on treating patientss with a transplant.
 
Hope your 6 month period goes by fast, but we know it feels so slow.
 
So Hello Jami, welcome

[peleroja]

Hi, Jami, and welcome to the group.  Sounds like you've been through a lot.  Keep us posted on how you're doing.

[FindingNeverland]

In hindsight I should have called my nephrologist but my general doctor seemed very confident in treating me. That was my other downfall, I missed lab work because I was either too ill to leave the house or too busy with my friends wedding, that's no excuse I know and believe me I learned my lesson, this is why I had to sign a compliance contract. 

[MooseMom]

Welcome.  This is a good place to hang out for six months, at least!  I'm new to all of this; what is a compliance contract?

[Lisa]

Welcome...it is a good thing you found this site, these folks are great!!

Just one thing...you must stay with the neph or transplant...you should have never been given Zithromax.  My PCP hates to see me because he is afraid to prescribe anything!!

[monrein]

  to IHD, Jami.  This is a good site for support, information and even some fun and laughs too.  Glad you joined us.

[FindingNeverland]

A compliance contract is a piece of paper stating that I won't ever miss blood work or anything of the sort ever again.

I have always stuck with my nephrologist but it's just easier to see my general doctor for (what was thought to be) general things, plus my nephrologist is an hour away from where I live and they're the closest facility. But since all this I now have a new pcp who has experience with patients with kidney failure.

[MooseMom]

A compliance contract is a piece of paper stating that I won't ever miss blood work or anything of the sort ever again.

Really?  I had never heard of such a thing.  Then again, I'm the sort of patient who is always there with a list of questions and queries about why this drug and not that drug and why this test and not that test.  I can be a pain, but in a nice way.

[FindingNeverland]

Must be where I go, I never heard of such a thing either MooseMom. I was a little taken aback when they said I had to sign one. I'm definitely like that about my meds and such, I was just so ill November and December and my pcp at the time really had me thinking she had it under control. 

[MooseMom]

She probably thought she had it under control, too.  You work so hard to be your own best advocate, to do everything you are told to do, and then when you are in a situation where you have to trust someone else, they let you down.  I'm so sorry this happened to you.  I hope your new PCP will serve you much better.

[Chris]

A compliance contract is common here from the 4 transplant centers I looked at and the dialysis center. It's not used for every patients though. It is basically like having to prove to them that you will be responcable if you get a transplant and have learned from your mistakes.

[Jean]

Gosh, what a journey you have had.  to IHD. You have a lot to share and can always ask questions here.

[Rerun]

I'm glad you are with us.  I'm glad you have a new Primary doc.


Rerun, Moderator                     

[jleathers]

My name is Joe I am a 61 year old in stage 5 of kidney failure.  Going for vein mapping on Monday then hope to get a fistula soon.  Currently kidney is at 18% down from 25% a couple of months ago.  Feeling ok- but get tired fast.  Still working but looking at a plan to retire early and enjoy life a little.  Worried about what the future holds for me and my family.

[FindingNeverland]

Thank you all for the warm welcomes, I'm so glad I found this site.