Kidney with Bone Marrow Transplant

[lainiepop]

How many biopsies do u have to have? Do they have to do them because of the trial ? As i thought thy are normally reluctant unless they think kidney is rejecting xx

[Ninanna]

The paper work I have has three biopsies, but doesn't say when. I already had one biopsy, but that was a for cause biopsy (creatinine was 3.9). They will give me new paperwork with the schedule before they start the with drawl.

[Ninanna]

After 4 1/2 months, my hair is starting to grow back!

[cassandra]

Great news hon

       


Lots of live, Cas

[SooMK]

Excellent!

[Ninanna]

What an absolute shitty day!  Not a single lab result was good today   All cell counts were down, creatinine was up, my hemoglobin was 7.8.

Some good did come out of it though...they are lowering my Sirolimus target.  They were talking about lowering my MFF again as well (I take 500mg twice a day) but I'm not holding my breath for that one. 

[jeannea]

Sorry. Transplant is a roller coaster. Hydrate well. Do something that is calming for you. Hopefully the next set will be better.

[SooMK]

Oh no. So sorry to hear this. Hoping for better next time.

[lainiepop]

sorry to hear this, hope next lab draw is better, how r u feeling in yourself now? xx

[cariad]

Sorry to read this. Jeannea is right, transplant is notorious for throwing curve balls, and there's a good chance this is just a blip that will come right in the end. You're in my thoughts. Keep drinking that water!

[Ninanna]

Thanks guys for the kind words.  Yesterday was just an accumulation of all my frustrations.  The rise in creatinine was minuscule really, but combined with everything else, It was the straw that broke the camel's back so to speak.  I just wanted to really punch something.  So glad I could come to this site and just let it all out.

The most frustrating part about this experience I think is how long it's taking to normalize things.  I knew it would be a much longer recovery time, but it still sucks.  After 4 1/2 months, my counts should be better, but they aren't because of that damned CMV.  At times I feel more tired and more out of breath than I was before transplant.

Thank god I am going back to work next week.  I need something to take my mind off all this and get me out of the house.

[Deanne]

I've been watching and am amazed at the strength you've shown. When I first heard you were having this done, I was jealous. I wanted to go down this route, but I couldn't. Now that I'm seeing how difficult it has been for you and I'm amazed that you're still sane! I understand the need to go back to work as a distraction. I went back earlier than I had to for the distraction, too and my experience has been a breeze compared to yours.

[Ninanna]

I've been watching and am amazed at the strength you've shown. When I first heard you were having this done, I was jealous. I wanted to go down this route, but I couldn't. Now that I'm seeing how difficult it has been for you and I'm amazed that you're still sane! I understand the need to go back to work as a distraction. I went back earlier than I had to for the distraction, too and my experience has been a breeze compared to yours.

Thank you so much for your kind words Deanne.  You've been through a whole heck of a lot too, so I wouldn't discount your experiences.  This disease is a bitch for everyone hehe.

I think part of the reason I felt so down Monday and Tuesday was because I needed blood.  I got 2 units yesterday and I feel soo much better.  I also got to units of platelets so I could get my chest cath out yesterday as well.  My shoulder is a little sore, but tomorrow I am looking forward to a normal shower!

Already they are thinking of altering the pre-conditioning a little to make it less strenuous. I had 3 days of ATG infusions, followed by 5 days of chemo and dialysis, then total body irradiation, and finally the transplant date.  There was also 2 days of high dose chemo post transplant to limit GvHD.  Now they are thinking of having a 2 day break between the IgG and chemo, and only have 3 days of chemo.  If the person hasn't done hemo before, they also want them to do some extra sessions to get used to it before hand.  I did tell them if I had to do extra days of dialysis I would have been pretty upset.  I threw up everytime (which actually was a relief because it temporarily distracted from my pounding migraine) and I had one tech that was a complete jerk, and at the end of the sessions I clotted the machine, so he pumped it back manually...it was scary as shit and it hurt my heart.  I did complain, and I got the sense he got in a lot of trouble and the lady said he would never treat me again, lol.

[Ninanna]

So I'm back at work part-time and omg it's the best thing ever!  I am sooo happy to be back. The only problem now is I'm too amped up at night and excited for work the next day that I just can't sleep!

On another note, the last week in July is my kidney biopsy. Then if that looks good they start the taper of the prednisone and MMF. The taper has to be completed by the end of September. My birthday is the 26th of September, so that will make a nice birthday present if all goes as planned. Then I have to do another biopsy before they can taper the rapamune. It didn't sound like I would have any biopsies after that unless there was a problem.

[SooMK]

How wonderful that you're able to start back to work and are excited to be there. I'm sure you'll settle down soon and be able to get some sleep (one of the most elusive activities sometimes). Congrats on this milestone.

[Ninanna]

Platlets, white counts, and even my red blood cells are officially on the rise!  I have 33k platelets which is a record breaker for the past several months. I soo hope last week was my last blood transfusion. My Kidney biopsy is scheduled for the 30th of July which is three weeks away. If I am super lucky I might not need a platelet transfusion before hand!  Hair is continuing to grow and right now I couldn't be happier!

[talker]

Platlets, white counts, and even my red blood cells are officially on the rise!  I have 33k platelets which is a record breaker for the past several months. I soo hope last week was my last blood transfusion. My Kidney biopsy is scheduled for the 30th of July which is three weeks away. If I am super lucky I might not need a platelet transfusion before hand!  Hair is continuing to grow and right now I couldn't be happier!

                                                       And may your bouquet of ' happier' flowers, fill all the places in your life.     
                                                                                                                   
                                                                                                                        

[PrimeTimer]

That's SUPER, Ninanna! Congratulations on the good word! I have so admired you for sharing your journey with us here. Beautiful picture, too! You have more hair than my husband! (honey, if you read this, sorry in advance).

[Ninanna]

Thanks Prime Timer and Talker, it really means a lot!

[PrimeTimer]

Thanks Prime Timer and Talker, it really means a lot!

No, thank YOU for being such an inspiration and a load of strength! I know, your poor body is hard at work but you are also performing a sort of "silent" duty to your fellow site members here, you just didn't know it! Thanks! 

[Ninanna]

Unfortunately I am in the hospital. I had a fever (has to be over 100.5 for them to be concerned) Sat along with the chills and some immense sinus pressure. I called the hospital at 3 am and they wanted me to come in as a precaution because I am their big expensive baby.  They started antibiotics but I still had a fever and symptoms last night, so if I'm lucky they will let me go tomorrow

[lainiepop]

Oh im so sorry to hear this i hope u get better soon. How r u feeling? My tx centre is the same has to be over 38 celsius (100.5) for a concern. With utis they dont give me antiobiotics straight away unless i have temp of over 37.5. In fact im wondering if i have one at the mo, its hard to tell with my bladder as it produces mucus which when breaks up can make wee look bitty and cloudy. Doesnt smell and temp is 36.7 but i might get gp to send it to lab tomorrrow anyway just in case one is brewing.

Do they know what is causing the fever? I hope it comes down quickly. When i was in hospital 8 weeks ago for my bowel op my temp was regularly 38 or over 37.5 anyway, it baffled the docs as they sent off blood and urine cultures, scanned me, creatinine stable and i wasnt ill or had any symptoms of a fever except one! They let me go home and it came down in a day, i put it down to stress and anxiety, some docs say this can happen if u get yourself in a state like i did, however its not medically accepted but it must've been the case for me!!

Get well soon xxx

[jeannea]

They're going to be fast with the hospital trigger for a while yet. They need to have you close to keep an eye on things. I hope you feel better soon and they're not torturing you too badly.

(I keep a hospital bag in my trunk at all times. You never know when you have to go.)

[MooseMom]

Well Ninanna, that's what you get for being their big expensive baby!   

Do you think you have a sinus infection, hence the "immense" sinus pressure?  I sure hope you feel better soon.

[Ninanna]

Thanks guys for the well wishes. Last night was pretty miserable but today I feel much better. I also got 2 units of blood because my hematocrit was low (again). They did a CT of my sinuses and said they looked like they did back in April when I was having trouble with them. They also said sme counts were a little elevated so they are ruling out other things (man do I hate getting flocked).

On a good note I can pretty much trouble shoot my own pump now when it starts beeping. I also walked all over the hospital today and got some real food! 

It's funny MM when I called about my fever, the oncologist on call was about to just send over an antibiotic prescription and call it a day, but the more she looked at my chart the more she was like, "oh, you have a unique complicated history, I need to consult with another doctor on how aggressive they want to be, I'll call you back"

I also got a laugh at some poor fellow today when they did rounds, there were seven people in my room, and by the time he got his mask and plastic gown on the doc was done and leaving, so he missed the whole shebang lol.