Stop all this rejection!

Here we go again! The story so far; Maddy has been fighting the rejection that started back in June for the last six months with not much success. Overall she has not really felt good for the last six months. She can barely breathe, gets winded when she walks a few feet, and she has not been able to gain back the weight she lost during the rejection. Her antibodies initially went down a bit in response to the pheresis and IVIG. They continued IVIG every month for the last six months. On Dec 18th Maddy had a clinic visit. Her pulmonary function levels were still stuck where they have been since the rejection episode in June. They also ran blood work to check her antibody levels again. Then on Dec 20 she went in for her final round of IVIG. She got the usual call after her appointment saying that her prograf levels were off so they adjusted the dosage and ordered blood work for Dec 26. The next day, Friday, they called and said her antibodies were still too high and that she needs to go back into the hospital to stop this rejection. So here we are today.

Dr. Rolf said that the IVIG targets your B cells and that usually does the trick for stopping the production of antibodies. But Maddy's T cells are apparently very active and keeping the antibodies in production. They plan on doing another round of pheresis, see explanation at the bottom of this old blog entry, followed by thymoglobulin. Dr. Rolf said thymoglobulin is about the same as IVIG, but attacks all the antibody producing cells instead of just the B cells

The plan is five days of pheresis followed by thymoglobulin. Should be out of the hospital in 8 days or so.

So that brings you up to date onto our visit so far. Dr. Rolf wanted to make sure we got the pheresis started right away so he personally put the large bore line I her neck. I was able to stay and hold her hand through the procedure. You may remember the fun Maddy had getting this line taken out at the end of her last visit. If not, here is a refresher. Needless to say she was not looking forward to getting another one of those lines placed. When she found out they were going to do it in the room with a local anstethetic, instead of down at interventional radiology where they sedate her for the procedure, she was less than happy. They gave her an oral medication to help her anxiety about the procedure but we all know that doesn't work worth a crap. I was able to hang out during the procedure and they even made me wear a hair net, which did provide a little comic relief to the situation. So here is how this procedure works. Do not read the next paragraph if you are squeamish.

The line goes into one of the veins in your neck, in this case on her right side. The doc starts with a quich sonogram scan to see if the vein looks like its accessible. He showed us the vein and said it was huge and will be an easy stick. Then the prep starts. Lots of gowns and blue paper to cover everything and make a sterile field. Then the bed goes up, and her head points down. After about 10 minutes of set up, during which Maddy's anxiety had a chance to marinate into a fine frenzy, he was ready to apply the lidocaine and get to work. Pheresis used the sonogram to spit the vein again and then hit it directly with lidocaine. Ever see a movie where he bad guy jabs a needle straight into a persons neck? Yeah, that! Then he gets an even bigger needle and jabs it directly into the vein. While holding his finger on the new needle he then gets a wire that looked to me to be about 4 feet long and threads it into the vein through the needle. The wire is coiled up in a convienient little sleeve so the doctor can thread it in with only one hand. Well as our luck usually runs the wire was jammed and the doc had to fiddle with it for about two minutes before he could get it to work. With that finally done it was time for more lidocaine. This time in the skin around the puncture to get ready for the big catheter he is about to jab into her neck. Here is a lovely picture of the one that came out last time, it's about the size of a drinking straw. After the lidocaine had about three seconds to take effect the doctor made a small incision in her neck to make room for the drinking straw. It was very obvious by the look on Maddy's face that she felt every bit of what was happening to her. After that he threaded on another slightly smaller catheter into her vein that, I think this one is just a place holder but I don't recall hem removing it. After that it's time to put in the line. Using the wire as a guide he then threads the large bore line into the vein and then removed the wire. Ever see a plumbers snake come out of a drain? Yeah, like that only bloody. Remember all the blue sterile stuff I mentioned before? It was draped over Maddy's chest and that is where he doc slapped that bloody wire, thwack! After that he flushed the lines and capped them off. Sutured the line to her neck so it does not come loose and dressed it. This is Maddy about 20 minutes after the line was placed.

Can you tell she was not very happy? Dr. Rolf said she did so good and was such an easy procedure that he gave her a lung lapel pin. These pins are what he bought the transplant team for Christmas this year. Ginger, the transplant nurse who assisted him today, told us that nobody except team members got one of those pins! Maddy is very special. She put the pin on her purse...

It's been about an hour and a half since they placed the line and things are running as well as can be expected. Maddy is still in a lot of pain but they gave her some Norco and she says it only hurts when she moves. And as if on cue the guy gets here for her first round of pheresis! Time to fiddle with a fresh wound!

 

They still have to place another line in her to use for blood draws and any IV medication they will need to give her while she is in. The doc said usually they do a pic line but Maddy has not had any luck with those so they are ordering another one of those little lines that will go in her neck near this big one. Just like last time. Hopefully now that they have this big line in they will be able to knock her out to do the little one down in interventional radiology. I guess we will find out later. Dr. Rolf told the nurse there is no hurry on the second line so they will work her into the schedule when they can.

 

I have packed up to hang out with Maddy for the next few days. I have to cover the morning show tomorrow but then I'm off on New Year's Day. Gonna have to find somewhere to get us a new year dinner! I'll update again if anything weird happens. Otherwise I'll just give boring little updates every few days. I will leave you with the comic relief I provided during Maddy's procedure.

Needless hair net selfie!

 

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Home after first rejection episode

Well that was quite a ride! We finally got out of the hospital and home on Saturday afternoon. Things are getting back to normal and Maddy is very happy to not be stuck in the hospital any longer. She still has a bit of recovering to so but we hope she will be back to her full self on a few weeks.

Follow up will be ongoing for at least a few months. She has an appointment tomorrow morning for blood work and possibly a consult with cardiology but we can't really figure that one out. We will have to double check when we get to the hospital tomorrow to see what all appointments she will be going to that morning. They will be watching her antibody levels carefully and checking them weekly. She will also be getting IVIG monthly.

I can tell the chemo is still taking it out of her because she has been nauseous and tired all day today and yesterday. I'm trying to get her to eat little bits at a time and hoping that will keep her energy up. I'm also hoping the effects of the chemo will be over very soon! It's really beating her up! I am making pot roast for dinner but don't think she will be able to eat much. Oh we'll.

I guess the only other thing is her PFT's. They have been increasing slowly, very slowly. I'm hoping she will get back to full lung function but the doctors can't promise anything. At this point she is back to being short of breath if she walks around too much. Yesterday while she was cleaning Tweaks cage she said she felt short of breath but checked her sats and was at 99%. So at least she is getting enough oxygen. I'll continue to update the blog as she completes her follow up treatments and appointments to keep everyone posted on how her numbers improve.

Thanks again for all the prayers!

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Day 18, not going home!

Well we thought we were going home but it looks like we will be here for another night now. The short story is that there was a problem while they were removing the big central line that they used for pheresis. Let me just say right now that Maddy is doing ok and they are keeping her for observation after the complication but it looks like things are good at this moment. For the long version continue reading.

Maddy got confirmation this morning that she would get to go home after she got her IVIG. I got to the hospital after work at around 1:00 and they had just started it. They administer it in 15 minute phases checking her blood pressure and temp to make sure she is not having a reaction every time they step it up. It goes really slowly and was after 5PM before it was finished. As you can imagine we were chomping at the bit to get on out of here by the time it was finished. They have a doctor, I'm pretty sure it's a surgeon, come up to remove the Hickman and Central lines before we can leave. The nurse told us that Maddy would have to sit in bed and not move for two hours after having the lines removed before she could be discharged. Bummer but oh we'll.

The surgeon ended up getting tied up with an emergency and didn't get up to Maddy's room to remove the lines until 6PM. After all the prep was done and the sterile fields were set up he went about removing the stitches that hold the lines in place. Then he pulled out the Hickman and seriously it is the biggest line I have ever seen in my life. When Maddy described it as a bendy straw in her neck on FaceBook the other day it was no exaggeration. After they remove it they have to keep pressure on the site so the vein will seal and not bleed. He had the nurse keep pressure on the Hickman site while he removed the central line. That one gave a little trouble because they are designed not to come out. The line can actually seal itself to the vein and skin so sometimes they have to use lidocaine to numb the site before they pull that line out. After numbing the area the line was removed with no issues.

Now is when things get a little weird. All seemed to be going well, everyone was chatting about how big the lines are and how crazy they looked, I even got a pic of the Hickman before he took out the other line. Then as they were prepping the sites for the final dressing Maddy said something doesn't feel right and then coughed. The surgeon said don't cough and quickly out his finger back on the Hickman site. Maddy just kept getting worse and saying she couldn't breathe and felt funny. Things moved pretty fast from there, they hooked her back up to blood pressure and O2 sats. Her pressure was ok but her sats were way down and her heart rate was through the roof. We worked on getting her calm and then the surgeon turned her over on her side, Hickman site side up. After she was able to breathe again and didn't feel like she was going to die she told they doctor that she heard a gurgling sound just before she started feeling funny.

I know it's way too late for long story short but the surgeon said he is pretty sure some air got sucked into her vein, a venous embolism, which will dissipate and be absorbed by her body. But in the mean time she has to continue laying in her left side and they have her head titled down a bit. They have taken a chest X-ray to see if there is any air in her venous system near her heart and we are still waiting on the results. It's about 9:20 PM and like I said at the start I'm sure we are here for the night. I'll add to this post if anything happens or changes. In the mean time here are some photos for your enjoyment and probably not enjoyment.

This is Maddy when we were waiting for the surgeon to come remove her lines.

This is the Hickman line. I know there is nothing in the shot to give perspective. I'm not joking when I say it's about the size of a straw.

And finally a picture I just took of Maddy feeling all crappy and not wanting to go through any of this any more!

11:30 PM, X-ray results

The results for the X-ray came back and all is clear! Maddy is allowed to sit up again and they are weening her off of the O2. They put a heart monitor on her so they can monitor her over night. She is on 3 liters of O2 with just a nasal cannula and her sats are around 96. I'm guessing she will be back on room air in a few hours.

The surgeon came back in after taking care of the emergency he was called away for. He mentioned to me before he left that he was being called away to repair someone's bleeding kidneys. I asked him how the guys kidneys were when he came in and he talked to me like I am a vascular surgeon too. LOL. I think he likes us. Anyway he was very happy to see Maddy sitting up and almost smiling, actually I think she cracked a smile or two while they were chatting. He said that she gave him quite a scare and he is very happy she is feeling better. She said "you were scared!?!" That got laughs all around. He is on call all weekend so he said he would pop in again in the morning if she is still here when he gets to the hospital.

One last picture before I try and get a little sleep. This is Maddy happy to be alive!

 

 

 

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Day 17, Final Chemo

To say that Maddy is worn out would be an understatement! But the final round of pheresis and chemo are finished and we think she is in the home stretch. She was told by the doctor that she could go home at the end of this round of treatment and was hoping to leave today, but alas she forgot he mentioned one more round of IVIG which is not until tomorrow. So, don't want to jinx it but we should get out of here tomorrow.

As for today, Maddy was feeling pretty crappy for most of it. She can't seem to eat at all without feeling like she is going to vomit. Just taking a sip of water had her heaving for a few hours. And she has been getting killer headaches. She has been taking strong pain killers to combat them but I'm sure that is just adding to the problems. She is not sure if all this is from the chemo and all the treatments she has had to endure. The heaving session was hours before she got her final dose of chemo so we can't blame it on today's round. She is worried that she has developed C-diff, which is an intestinal infection, commonly linked to long courses of oral antibiotics. In normal people you know you are getting it because you develop diarrhea. However, both my kids present with the inability to keep anything down instead. We are so backward. This is the intestinal infection Ethan almost died from when he was six and Maddy has had a few times and the doctors never believed her because it didn't present with the common symptoms. So we are always on the look out for this pesky little bugger. It's very easy to treat with an oral medication and usually clears up within a few days. Hopefully they will just go ahead and treat her just in case. I don't think it can hurt at this point!

I guess that's it for now. Hopefully I will be posting a final update for this visit tomorrow from home. Please pray for that. Maddy is tired and wants to be home! Oh, and so do I!

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Day 15, Vampire

Maddy got two pieces of news this morning. The first bit of news was positive, her antibodies are down by 40%! The doc said that is good and she should be able to finish up her treatments after this round of pheresis and chemo. Then he wants her to get IVIG every month after this to help reduce the risk of chronic rejection. The not so good news is that her blood count has been on the decline and she needs to receive a blood transfusion. No big surprise there. After all they did take blood from her every hour on the hour yesterday! So this morning they gave her some IV potassium and some magnesium in preparation for the blood. I'm guessing she will be getting whole blood but she can't remember what the doctor said. Oh and they had to give her some weird shot in the back of the arm that has left a nice welt. Poor kid.

Anyway, we are still waiting on the transfusion. Hopefully things will still be looking up over the next few days and we will get out of here by the weekend. But I don't want to jinx it.

Oh, and I got her a smoothie on the way back from work! I'm an awesome dad! Ha Ha.

4:30 PM Blood is here.

They finally got Maddy's transfusion ready. She will be getting 2 units of whole blood. Because she has had an allergic reaction to blood products in the past they will be infusing the blood over an extended period, 3 1/2 hours for each unit, and monitoring her vitals the whole time. So she may be finished by 11PM if we are lucky. That means she is tethered to her IV and a blood pressure cuff for the duration.

 

Now we wait to see if she has an allergic reaction. She may get hives just from the thought of the possibility of getting hives!

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Day 14, A New Week

Here we still are. Today Maddy will get another round of pheresis and the third round of chemo. She is pretty worn out from it all and trying to keep her spirits up. They are still checking her kidney functions frequently and also doing other blood work every hour to check levels of different things. Gotta keep all of the big picture in view. We were hoping for some antibody results today but so far we got nada! They have been working on Maddy for over an hour now trying to get this round of pheresis going. The first try there was a problem with her platelets I think. Then they had to change the dressing on her central access site. I'm hoping all goes smoothly this time around. The machine is spinning up again as I type and I'm finding myself holding my breath waiting for it to beep and say its not gonna do it. Ok, I see albumen moving out of the bottle... And there is plasma going into the bag! We have lift off people! That is a relief. If there was a problem with her central line I would hate to think about how long that would take to correct. Which would put us way behind schedule on these treatments and she would never get to go home.

That's my view during Maddy's pheresis treatment. That big bag full of yellow stuff is her blood plasma which they throw away.

So, tonight after this treatment she will get her next round of chemo. Then tomorrow is a rest day. Hopefully we will have some results about her antibody levels by then. Meanwhile it's just sit and wait and try not to feel too rotten from the chemo. Oh and did I mention the pheresis makes her cold now? So it's about a hundred degrees in the room! I should do some hot yoga! Lol

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Day 12, The Weekend

It's Saturday, I think... Things are moving slowly in Maddy's treatment. They are doing two days of plasma pheresis with a dose of chemo after the second treatment then a day of rest. Yesterday was the second dose so today is a rest day. Maddy said she things yesterday's dose of chemo was bigger than the first one. She is feeling nauseous today and she didn't feel that way the day after the first dose. Yesterday she was really worn out even before pheresis and chemo, she said she pretty much sleepy the day away, she even went right to sleep after getting her chemo treatment at 6PM. They also started her in a daily dose of Ableset, an inhaled anti-fungal to make sure she does not end up with yet another complication while being treated for the rejection. It's a very gross medication to inhale and takes about 45 minutes to administer. Yuck!

They also started her on a new oral supplement of Sodium Citrate and Citric Acid. Not sure what this is for, probably to replace something she is loosing during pheresis, because they said she the levels in one the many things they check every day were down. Then they started giving her this. (Sorry, normally I have better information but I have not been able to be here to chat with the doc for a while.) Anyway, as you can probably guess by the name it is very acidic and hurts Maddy's tummy when she drinks it.

No official word on if her antibodies are going down substantially or not. I am hoping we will have good news on that front tomorrow or early next week. I'm still just trying to take it one day at a time. Maddy is coping well, as usual, but overall just feels rotten. Of course she won't tell anyone that! If you ask her how she is doing her response is always just "fine". She says its just easier that way. Lol

As usual no news will be good news, I'm not going to update about the boring treatments every day. Thanks again for the prayers and we hope to be out of here one day.

Day 13, Sunday

The food is gross in the hospital. Add wicked tummy cramps to that and what do you get? Maddy spending yesterday not eating or drinking very much. As usual she spent most of the day suffering in silence, so I didn't know how bad she was hurting until 7PM. She mentioned a "tummy ache" to the nurse earlier in the day but it was underplayed so the nurse and I didn't even really think anything of it. Turns out it was a very bad tummy cramp that did not go away all day. We finally got her some pain and thay helped. She was able to eat some crackers. I had a suspicion the tummy pain was from the Sodium Citrate and Citric Acid. I looked it up on the Internet and the FDA website says to dilute it with water and take after eating. I guess the nurses don't read the recommendations because they were just popping the little thing open making her drink it straight and giving it to her when ever. I told her to not let them do that any more and make sure she eats something before drinking it. This morning Maddy had the nurse leave it and then she diluted it with water and took it after breakfast. No more tummy ache! I don't know why I have to always figure this stuff out. I guess it's fortunate that I'm good at problem solving.

So this morning Dr. Rolf said that we will get the results of Maddy's antibodie levels back sometime Monday afternoon. Then they will know how to modify her treatment plan. Hopefully they will be gone and we can end this madness but I don't know if they will just stop the treatment course even if her antibodies are gone. Today starts another cycle of pheresis followed by chemo. Maddy's Keaton levels were off in her blood work this morning. I'm pretty sure it's because she is dehydrated from yesterday. They want to make sure her kidneys are protected so they are going to hold back on one of the immune suppressing meds she takes, prograf, and give her some IV fluids before starting pheresis today. I told her she has to make sure she stays hydrated even if she gets a tummy ache because she can't afford to have her kidneys fail at this point! I'm sure this IV fluid will help and she will be back to normal levels tomorrow.

That's it for the weekend update. You all keep cool out there now!

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