Extremely bummed... and emotionally numb

[kellyt]

I saw my nephrologist today and did not expect to hear that my GFR went from 18 to 10.5 since Nov. 8th.  The classic "I thought I had more time".   

He wants to transplant me in March.  I hope my brother's a match.  My other brother hasn't quit smoking yet, and my husband just stopped smoking cigars a few days ago.  It will be a couple of months before they'll test them.

Oh yeah, and I have to start Epogen shots next week.   great...  What can I expect with the shots?   

[Claudia30]

Hi Kelly, sorry to hear your news. The epo shots aren't that bad to be honest. I have always had to give myself injections. I take 10,000 units a week...i think that is 1 cc in the needle. The shot burns for about a minute after you take it. you can take it in the leg (which is what i do) and rotate in a cirlce or you can take it in your butt. The nurses will tell you how to do it and should show you. Don't be afraid to ask them if you can do it a few times with them, thats what my nurses did when i started and was not sure as to what to do. Good luck. THe shot by the way will help you get some energy. I have noticed that i am much more tired the weeks i dont take it for one reason or another. Keep your head up and hugs. I know it is hard sometimes and that you are upset. I understand as we all do. Good luck again.

[Sluff]

Sorry to hear the news kelly, I know you were so hoping to get that transplant before dialysis. My fingers crossed that you make it. 

[Ang]

hey  kellyt,

                  sorry  to  hear  that  your  a  bit  down  at  the  moment,hope  you get  yourself  back  up  real  soon. epo  shots are'nt  that  bad,take  the  epo  shot  out  of  the  fridge  about half  hour  before  you  inject,  should  take  any  pain  away.the  pain  usually  stems  from  the  epo  being  so  bloody  cold.
i  get  my  epo shot  through  the  port  on  the  dialysis.
hopefully  i've  helped.

[kellyt]

Of course you helped.  You all helped.

Regarding the shots, I'll be going to the doctor's office to get the shot.  Once a week until they get me to a certain # and then once every two weeks.  I'll also have to get my blood drawn every 30 days.

[angellady07]

Kelly, I'm sorry to hear your news. I hope everything goes well and the transplant happens for you in March. 

[Joe Paul]

That sucks, I hope things work out for you.

[rose1999]

Praying for you, 

[KT0930]

Sorry to hear that, Kelly, hopefully you can get transplanted before dialysis. As the others have said, epo isn't that bad to give, and I don't think it hurts at all after I finish getting all the medicine in (I don't take quite as much, though). Definately get it to room temperature before injecting it. I find that rolling the vial between my palms for a minute or so helps with that.

[KICKSTART]

I had the epo in the top of my arm , the best thing to do is get them to give it to you very slowly , it stops the stinging !

[donnia]

So sorry to hear that kellyt!  I hope you get transplanted ASAP but do be aware....some places take forever in their testing process. You might want to get started with testing your donors ASAP.
You will be in my prayers.....

[kellyt]

Thanks again, everyone.

My donor (brother) is calling my coordinator today or tomorrow to start his testing.  Phone interview first, blood testing and then two day hospitalization for remainder of tests if blood is a match.

How do they do tissue matching?  Is that done at the same time as the blood?

[KT0930]

They'll do the blood-type matching first because it's a much less expensive test. For that one, they already know your blood type from your work-up, they check his blood type, and if they play nice together, then they'll continue with the tests.

When he goes in for his two days of tests, you'll need to give some blood at that point for a cross-match, because the two samples for this test need to be taken within a certain number of hours of each other for it to give reliable results. Tissue-typing/matching will be done sometime during his two day stay. Good luck!!

[Deanne]

I'm sorry Kelly! You just stated my worst nightmare. Best wishes for a fast and successful evaluation!

[stauffenberg]

Having given myself about 40,000 insulin injections subcutaneously during my lifetime, as well as having given myself intramuscular and intra-arterial injections of various vitamins over the years, I am not the right person to ask about how painful EPO injections are, since to me they are no problem at all.

As disconcerting as it must be for you to have to learn that your GFR is declining, keep in mind that you are extremely lucky compared to most renal transplant patients, since you have the likely prospect of being successfully transplanted before you have to begin enduring the lasting damage that dialysis can do to your body.  I had to waste 8 years of my life dying on dialysis and watching other patients dying around me before I came to be in the same position you are now, right at the outset of your journey.

[jbeany]

Hang in there, kelly.  Hopefully you will find a match and all will go well.

You'll get used to the epo - it's a temporary pain in the arm, but it's worth it to have some energy back!

[okarol]

  {{{HUGS}}}

[goofynina]

Hey Kelly, don't be bummed (i know, easier said than done huh)   Remember we are always here for you, your not alone    I hope and pray everything goes ok with your brothers testing and he is a match    Please keep us posted.

As for the epo shots, if you ever have to give them to yourself, i was told the best place to give them is your belly, it doesnt hurt, trust me, the biggest baby in the world right here and i can do it    Good luck girlfriend 

[Bajanne]

Kelly, please know that our caring thoughts and prayers are with you as you go through this experience.  we pray that all works out well in your best interests.  Your IHD family is with you on this.     as the french say "Bon courage!"

[Psim]

What a hard piece of news. Hoping all the testing goes well and you get your transplant ASAP. Hang in there, Kelly!

[kellyt]

Thanks everyone, again.   You all are really like family.  I find myself thinking about ya'll during the day.  It's great!  I look forward to checking my computer everyday!     

My brother talked to my coordinator this morning.  Apparently, the "phone interview" is over and she will schedule him for his blood test.  I was worried because he just went through a divorce and he's trying to sell his house and stuff.  I was worried they might think he has too much on his plate right now.

Being that I'm still waiting to complete my evaluation I don't think she's going to rush him in.  She did tell him that his hospital stay will have to be during the week and not over the weekend.  That sucks.  We were hoping he wouldn't have to take days off from work.  He sounds good.  He doesn't appear to be nervous or anything.  I made sure he realized that it's "all about him" and they aren't going to put him through the surgery if he's not good to go 100%.  I love him just for doing this - no questions asked.   

Keep your fingers crossed.