Kidney with Bone Marrow Transplant

[Ninanna]

I'm so sorry that happened to you Sugarlump

I do have some good news today, my CMV test finally came back negative!  I get to switch to a lower dose of valcyte, so hopefully I can have cell counts again and get off of blood products. Assuming everything continues to look good, next week will be my last week in their in patient/out patient clinic. I will get discharged to their out patient clinic and come in twice a week, once mainly just for labs, and the other time for labs/clinic visit. I will say though I am going to miss my NP in the in patient clinic....she is just awesome!

[jeannea]

Yay!! Outpatient and CMV free!

[Sugarlump]

Has anyone told you just how expensive that Valcyte is!!! My Pharmacist told me a tub of 28 tablets costs £1200 !!!! because it is not in general use.
But we are worth it 
Glad to hear things are improving.

[Ninanna]

Has anyone told you just how expensive that Valcyte is!!! My Pharmacist told me a tub of 28 tablets costs £1200 !!!! because it is not in general use.
But we are worth it 
Glad to hear things are improving.

No but I saw the bill. My insurance paid $7800. Thank god my co-pay was only $25

[Ninanna]

Yay!! Outpatient and CMV free!

Thanks Jeannea!  I try not to get too excited though as I constantly feel like I am waiting for the "next issue" lol.

[Ninanna]

Today they lowered my mycophenalate from 1000mg twice a day to 500mg twice a day. This isn't the start of the immunosuppressant withdrawal part of the trial, they are only doing it because my cell count is extremely low from the valcyte. I've had a couple of shots of nuepogen, so hopefully that combined with the lower doses of valcyte and mycophenalate will boost my white count back up.

I am still on 10mg of prednisone, and 1.5mg once a day of sirolimus (sirolimus dose is small because I'm on an anti-fungal that affects how it is metabolized, before I was on 4mg once a day).

[Ninanna]

So today is my last day of valcyte!  It's also my last day in the inpatient/outpatient clinic, and what a long day it's been....a lot of hurry up wait. The only thing I really needed today was a unit of blood, but my type and cross had expired (the nurse forgot to draw it on Friday) so I had to wait 4 1/2 hours for it to come up

It takes about an hour and a half to run, so on my last day I am going to close this place down lol.  I am really going to miss my NP. She has been absolutely wonderful. I hope my NP at the out patient clinic is just as good, but she has big shoes to fill. I still get to keep my NPs from the kidney side who also amazing, plus my 2 BMT doctors and of course my surgeon.

I'll be seeing the trial nurse less as she moving to a different position, but we are forever friends. A doctor was casually asking what I did at work, and when I started talking about it, she suddenly got really excited. It turns out she was in a clinical trial for a product I help make for diabetic foot ulcers. Long story short, it healed her wound and saved her foot from being amputated. If she would have lost that foot, she would not have been here to help me in this trial.

My GVHD rash reappeared about 2 weeks ago, but it has been very mild and it's not in my intestines or liver. It appears to be resolving on its own. It's gone from my chest and neck and is fading out on my arms. It's mostly just on my legs.

It looks like my out patient schedule is going to be 2 twice a week for at least the next 4-6 weeks. Monday is just a blood draw, then hang out for the results in case I need anything. Thursday is more labs, then meet with my team.

I am hopeful I can get back to work the beginning of June.

[jeannea]

Great progress! I hope things keep going well.

[obsidianom]

What is the product you make for ulcers?

[Ninanna]

What is the product you make for ulcers?

It's called Grafix.

Info on product:  http://www.osiris.com/grafix
Info on the trial: http://www.streetinsider.com/Corporate+News/Osiris+Therapeutics+%28OSIR%29+Grafix+Met+All+Primary%2C+Secondary+Endpoints+in+Protocol+302/8905094.html

[Ninanna]

Great progress! I hope things keep going well.

Thanks so much for your support Jeannea

[cariad]

What great updates! Glad to hear that you seem to be on steady ground at last. I look for news on your experience in the trial every time I log on, so keep the posts coming, please.

Have they enrolled any other patients in this trial yet? Do you know when you are scheduled to be completely off the drugs? It took exactly one year for Northwestern's protocol. 

[Ninanna]

What great updates! Glad to hear that you seem to be on steady ground at last. I look for news on your experience in the trial every time I log on, so keep the posts coming, please.

Have they enrolled any other patients in this trial yet? Do you know when you are scheduled to be completely off the drugs? It took exactly one year for Northwestern's protocol.

Thanks so much Cariad!  I actually tried to PM you to tell you how much I enjoy reading your posts all over IHD, and how your experience with this type of procedure helped me make my decision, but your inbox was full >.<

They will start the drug withdrawal part 6 months post transplant, so that puts it at the beginning of August. I am halfway there!  As for how fast they will do it, I'm not really sure. They have to re-consent me before they start, so I imagine I'll get a schedule then. I am hopeful I'll be done before Christmas.

As for other participants, they have had lots of interest, but they are finding their protocol for who they take is kicking everyone out. I think they may found patient #2. Last week the surgeon did ask me if I would be willing to talk to any other potential trial participants and I said of course.

[Ninanna]

Have they enrolled any other patients in this trial yet? Do you know when you are scheduled to be completely off the drugs? It took exactly one year for Northwestern's protocol.

I got a little more information about the withdrawal timeline. At 6 months is a biopsy, then if that looks good they will start the taper. The prednisone and MMF will go first, the sirolimus last. I was a little disappointed to learn that it will take a full, so I won't be done until Feb

On an interesting note, I was sitting in the exam room with one of my BMT doctors, waiting for the others to show up, and your trial came up. I mentioned about reading that of their first 4 participants, only 1 was able to get off the drugs. His response was, "oh I know, dr [your surgeon] consulted with me about it."

[cariad]

I got a little more information about the withdrawal timeline. At 6 months is a biopsy, then if that looks good they will start the taper. The prednisone and MMF will go first, the sirolimus last. I was a little disappointed to learn that it will take a full, so I won't be done until Feb

I know it's easy for me to say, but once you get back into your normal life routine, the time will go by in a flash. I had some major problems after my one-year biopsy (to the point that the nurses urged me to withdraw consent for any future biopsies EVER, which I've done) so when the surgeon called me the day before my one year anniversary, I thought he was going to remark on that episode. Instead, he was calling to say stop taking all the drugs. I happened to get a call from my original donor straight after that, and when I told him he was very surprised and I think a touch nervous. He asked "Just like that?" Yes, just like that.

On an interesting note, I was sitting in the exam room with one of my BMT doctors, waiting for the others to show up, and your trial came up. I mentioned about reading that of their first 4 participants, only 1 was able to get off the drugs. His response was, "oh I know, dr [your surgeon] consulted with me about it."

I love hearing about how they all interact! They all know each other and know each others' work and will assist when asked, but I have always strongly suspected it's an uneasy relationship. They are in competition to some extent. Yes, I think they adjusted the method for prepping the stem cells for transplant after patient 4. I was not privy to this info, but I'm sure it's so technical that I wouldn't have understood it on any helpful level. Honestly, patient 2 should not count against their method as that was just a tragic fluke. Since the adjustment I believe (and I have no notes on this, so could be completely wrong) that they've found that they can achieve high levels of durable chimerism in their patients, so long as the patient PRA is under a certain threshold. I was mildly sensitized and have unwaveringly durable chimerism, so some level of PRA is fine (wrong again, Mass General!) I actually have my tubes for a chimerism draw sitting right in front of me, and no clue how I am going to get them done. Hopefully my results will be as normal.

As for other participants, they have had lots of interest, but they are finding their protocol for who they take is kicking everyone out. I think they may found patient #2. Last week the surgeon did ask me if I would be willing to talk to any other potential trial participants and I said of course.

I had to plead for them to request a protocol deviation from the FDA. I am so grateful that they were willing to go to this extra work for me. I spoke with one potential participant who was trying to decide which direction to go, but I think ultimately she decided against the trial. I also spoke with a woman who had already undergone the transplant - I think she was having anxiety attacks after the operation and wanted to speak to another female participant? (That left her with no options back then.) I think my 'whatever' attitude toward transplant did make the research team think that I would probably be an ideal person to calm her down. The other participant was very cool, and we had a fair bit in common. I think we could have become very good friends if I had stayed in America. I also posted on IHD that they were seeking participants and was happy to be slammed with PMs from people asking for details. One member went so far as to contact them, but she decided against it in the end. I told the research coordinator that I thought I was too honest because no one that I spoke to ultimately went through with the trial. The extra risk isn't for everyone, but I was so sure it was going to work that I didn't even see the extra risk and was surprised at how many people told me that they found the protocol "scary".  Northwestern also asked me to talk to the government reps who were looking after the funding of this, but I was on holiday out of the country. I would have been honored to do it, though. My guess is that you'll be asked to speak about this protocol many, many, MANY times.  

Thanks so much Cariad!  I actually tried to PM you to tell you how much I enjoy reading your posts all over IHD, and how your experience with this type of procedure helped me make my decision, but your inbox was full >.<

Aw, thanks! I do witter on, but I have been a transplant patient for sooooooo long, I guess I have a lot to say! Sorry about the inbox. I will have to make time to clear out all the messages I've been hoarding. 

[Ninanna]

I think I am starting menopause now as the last few days I have been experiencing hot flashes.  They aren't really bothering me to terribly, but it is a slightly odd feeling being 29 and having hot flashes. It may or may not be permanent. Even if it is permanent I am ok with that. And I would still do this all again.

[Charlie B53]

An amaxing experience.  You give hope to those of us that only dream of ever becoming anywhere near 'normal' again.

You have been through a lot,  I can only try to imagine how I would fare if I ever get the opportunity.

But the idea of having donor bone marrow and making a full recovery and eventual NO immune-suppresants, well, it is not science fiction.

Thank you for your bravery to help establish a much better prognosis for many of us.  I don't doubt that treatment like yours may one day become ac ommon thing, helping many to stay off dialysis.

Thank you.

[Ninanna]

An amaxing experience.  You give hope to those of us that only dream of ever becoming anywhere near 'normal' again.

You have been through a lot,  I can only try to imagine how I would fare if I ever get the opportunity.

But the idea of having donor bone marrow and making a full recovery and eventual NO immune-suppresants, well, it is not science fiction.

Thank you for your bravery to help establish a much better prognosis for many of us.  I don't doubt that treatment like yours may one day become ac ommon thing, helping many to stay off dialysis.

Thank you.

Thank you so much for your kind words Charlie, they really mean a lot to me. It has been one hell of a journey and still continues to be so.

The benefits of being off immunosuppressants are huge, including reducing infection, less risk of cancers, and other side effects.  Immunosuppressants are also associated with higher weights, higher blood pressures, and diabetes. But the real reason I chose to do this study is my hope that this kidney can last me the rest of my life.

Before I joined this site and read the many stories from all these wonderful members, I was naive and believed that a kidney transplant is a happily ever after just like the media says it is. While it is still a great treatment, the reality of it is is that I am 29 years old, and assuming things go well for me, I'll need at least 3 transplants over my lifetime. Each time getting harder to ride what I call the merry-go-round of transplant and dialysis.

Will my kidney last because of this procedure?  I don't know, no one knows. But it's something different than the process of transplant that we have been doing for decades and which the outcomes are well understood. It gives me hope. And hope is what I needed to cope with this disease.

[Charlie B53]

I have a great feeling about your rcovery.

Having made a successful DNA change to that of you Mother, the organ should be well at 'home'.

It may well have also removed the underlaying reason for your initial kidney failure.

Chemo and radiation can literally sterilize a body, you well kkow the hell it put you through.  The GI tract had to totally re-colonize just to handle processing food.  You were a walking dead person until the bone marrow took root and began to give you life again.  That had to be tough.

But it is history now.  You are getting stronger every day.

Enjoy, you deserve it.

Thanks again for the inspiration.

Charlie B

[Ninanna]

Thanks again Charlie, you literally made my day! 

It may very well cure my IgA. That was one of the questions I asked the doctors, but it was something they couldn't answer as the disease mechanism isn't well understood and as IgA hasn't been treated with a BMT.

What's really weird are some of the stranger side effects. Food and drink have only recently started to taste normal. For a while all I could eat and drink were milkshakes and cranberry juice. Now that my taste has returned I can't stand cranberry juice. I am also no longer allergic to my cat. I am so glad my mom (my donor) has no allergies!  Probably the oddest thing though is my body odor change. When I sweat I smell like cooked onions, and it is strong!  No matter how much I scrub or how much deodorant I use I sweat way more than I used to and I can smell it. I hope it tones down over time as my glands normalize lol.

Below is a pic of me on my last day in the in patient/out patient center.

[Charlie B53]

You know the old saying, " Like Mother, like Daughter."

I bet in the time to come you will find even more that you 'are' your Mother, not that it's a bad thing.  She must be a great lady to be willing to put herself through surgery to help you.


Don't be surprised if hair color begins to match, if not what she is not but what she was at about your age.

You two are going to become even more close.

This is going to be a very interesting study.

Ground breaking.  One day I can see a lot of people going through the DNA change then later having the transplant.  Doing them seperately could easy much of the trauma of going through both at once.

This is going to be BIG.

[Ninanna]

It's been about a month since I stopped the Valcyte. My whites are creeping up, but aren't quite yet in the normal range. My platelets and red cells are still going down, but not as much. I haven't had a transfusion of either in a little over 2 weeks, so they are holding their own to a point.

I also had a check up with the eye doctor. He said mt field vision test had improved so much over the one I had in April that he hasn't seen anything like it. I still have visual disturbances, but light and color are looking better. He also wrote me a new prescription, so hopefully that will help some.

I still have the Hickman catheter in, hopefully that will be out at the beginning of June. After that I think I will go back to work part time. Everyone is telling me to take my time, but I am climbing the walls and the doctor said I could go back when I wanted. He also said that I've been through enough stuff that I could stay on disability for a long while and he'd support me. But I think I need to go back for my sanity, plus I think it will help me get stronger to be out of the house more.

[Deanne]

You're doing awesome! I admire the strength you've shown in getting through all of this. Is going back to work part-time for a while an option? I started back that way and I was very glad I did. I was able to get out of the house and feel productive, but after I put my half day of work in, I loved having the afternoons free to go out to play. It seemed like the best of both worlds.

[Ninanna]

You're doing awesome! I admire the strength you've shown in getting through all of this. Is going back to work part-time for a while an option? I started back that way and I was very glad I did. I was able to get out of the house and feel productive, but after I put my half day of work in, I loved having the afternoons free to go out to play. It seemed like the best of both worlds.

Thanks Deanne!  Reading about your transplant and Angie's has helped me. I think of you guys as my transplant buddies since we all got transplanted around the same time

Work has been absolutely great in working with me. They have told me I could work 5 four hour days, 4 six hour days or anything in between. I am in the process of getting all the paperwork together and nailing down a schedule. It's looking like the second or third week of June.

Today was the first time my platelets didn't drop!  They went up by a thousand, which isn't much but it's a step in the right direction. I am looking forward to having this catheter out!

[Ninanna]

So my Hickman line is finally coming out next Wednesday!  Unfortunately they will have to give me a platelet infusion right before they take it out, but I am so happy to see it finally gone!  My hair is also starting to grow back.  I kinda thought it would all start growing all at once, but I was sadly mistaken, heh.  It's very patchy and spread out, so you still see mostly scalp, but there is definitely new growth.  I also get to go back to work part time starting on the 17th, so I am looking forward to that as well!

Unfortunately I just can't win with my Rapamune level.  They increase it, it's good for about a week and a half, then the level goes down and I have to increase it again.  I am up to 8 mg now.   

I cannot wait until the drug with drawl portion of this protocol starts at the end of July.  I have been trying to negotiate on the kidney biopsies that I have to do, but so far that's not working out too well, lol.