Kidney with Bone Marrow Transplant

[jeannea]

Good luck! You can do the long needle.

[cassandra]

Did the procedure go all right?

[Ninanna]

The procedure went really well. It was quick. We went to the OR Suite at 6:30 am and I was discharged by 8:45. It was called transvaginal asperation. I was put under for it. Some soreness afterwards, but nothing that is a big deal. Mostly im jusy constipated.

They got 11 eggs which was good. However this morning I received the bad news that only one egg has fertilized. 4 more are still in the running, but the rest were duds .

I was expecting a 50% fertilization rate, but now it looks like I'll be lucky to get two. It's just a huge let down, especially considering that its costing me $5500. 

Really though, I guess all it takes is one good egg to result in a pregnancy.

[jeannea]

I'm so sorry you didn't have a better percentage. Hopefully it's enough.

[Ninanna]

Unfortunately I found out this morning that none of the embryos made it.  They all stopped growing before they became 7 cells.  It sucks.  They want me to think about doing it again, but I think I'm done.  Time to focus on the real reason for all of this which is the transplant.  Besides, I have my suspicions that my kidney failure is effecting the quality of the embryos anyways.  I don't think they have ever done an IVF procedure on someone with kidney failure. 

[jeannea]

I'm so sorry. 

[Ninanna]

I finally have some dates!

24 Jan - Pheresis catheter placement
26 Jan - Preconditioning for bone marrow transplant starts
29 Jan - Admit to the hospital
04 Feb - Kidney and Bone marrow transplant!

I still have a lot of appointments between then and now so Jan is going to be a super busy month!

[Shaks24]

Best wishes for optimal results!

[cassandra]

Lots of good luck my darling,

   

[lola]

Best of luck

[Ninanna]

This week my mom (my donor) and I completed all the additional testing the bone marrow team is requiring for the transplant.  A lot of it was the same, however the bone marrow team has to have a lot of the tests completed within 30 days of the actually transplant, so there was a lot of duplication of the tests that I had done 9 months ago. Two additional things I had to do was a Pulmonary function test (lots of blowing air into a machine) and a CT of my sinuses.  Next week I take a bone marrow education class and have a radiation oncology consultation.

My egfr they measured yesterday came back at 9%, so it's kind of funny that every doctor keeps telling me how amazing I look.

[cassandra]

It's psychological

   

Good luck

[Ninanna]

I am a week out from everything starting and I have almost completed everything they want done. They decided they wanted my IUD out, so that is coming out Monday. Wensday I have another full day of teaching, consents, and a radiation simulation. Then on Friday the cath goes in and we get this party started!

I am excited, but also curious/nervous as to how all the chemo and radiation will affect me. The doctors say everyone responds a little different in terms of how bad side effects are.

[noahvale]

*

[Ninanna]

Thanks Noahvale!

[obsidianom]

Best of luck.
I had radiation years ago for cancer. The main side effect most have is fatigue. Chemo is very variable in side effects. (I had chemo too). So only time will tell . Regardless, you will get through it.  Just focus on the end game , what you will gain from it. 

[jeannea]

I'm sure this will be tough but you can do it. Be kind to yourself.  Take anything they give you to relieve the symptoms. Good luck!

[okarol]

  Hi - sending you lots of hugs and best wishes that all goes well! 

[Ninanna]

The catheter went in Friday without any problems, and here I am at day -9. (Day zero is transplant day)

Today I am starting the preconditioning, and it's going to be a long day. I am being infused with ATG over a 6 hour period. First though they have given me Tylenol, benedryl, and some IV steroids (methyl prednisone I think). Now I just have to wait 30 minutes more before they start the ATG.

I am slightly concerned about my mother who is my donor. She flew in last night, but this morning she said she woke up with what felt like the beginnings of a sore throat. Tomorrow if it persists they are going to run some tests on her, but if they come back with a virus or a cold then everything is going to have to be postponed and rescheduled. 

[lainiepop]

Good luck!! A hoping all is fine with your mum and it doesnt get postponed xxx

[Ninanna]

The ATG hasn't been too bad. I do have a fever, some aches/chills and a headache, but those are all to be expected. I did throw up once, but the nausea is gone now. Tomorrow I get a much larger, more concentrated dose of the ATG over a 4 hour period.

[Angiepkd]

You are so brave Ninanna! Sending prayers your way that everything goes as planned!  Thank you for posting and for taking part in this procedure. I sure hope it will change things for future transplant patients.  Stay strong! You can do it!   

[cassandra]

Lots of good luck, and strength, love

     



Love, Cas

[Ninanna]

Thanks guys!

Angiepkd: I know my surgeon does a lot work with people who have high anti-bodies, and one of the reasons he is excited for this is he hopes it can be used to help people out in those situations that are super hard to match.  So hopefully it works and they get lots of good data!

[Ninanna]

Finished my last infusion of ATG today, and I can't tell you how happy I am to see the backside of that!  I've had some really bad aches and pains and the most horrible migraines ever. According to the Dr though they've seen much worse side effects and claim I'm doing well. It's all about perspective I guess lol.

Tomorrow I check in to begin the inpatient portion of this procedure. The chemo will be in the morning and the hemo dialysis in the evening. At some point tomorrow I will also be getting my first unit of blood. Their standard procedure in the bone marrow clinic is to give blood once your hematocrit drops below 25%. It's been below that for the past 3 days, but they have been holding off because of the ATG.   I'll be happy to get because I've been super super tired today and my hemoglobin is at 7.8.