Dermatology Appointment & 3 Month Clinic Visit

We had our dermatology appointment last Thursday and our 3-month checkup with the transplant team this past Monday. Both appointments went well.

Dermatology appointment

Dermatology appointment

At the dermatologist, Anya had two spots on her scalp biopsied, both the size of a dime. The reports came back on Monday night and the dermatologist determined that both spots were “pre-cancer”, which means no need for surgery. We scheduled an appointment for next month to go back and “burn” them off with liquid nitrogen. Phew! We were very worried about one of the spots pre-transplant, mainly because we thought that they wouldn’t list us knowing that Anya might have a new skin cancer spot.

We told the doctor about the new cancer spots at our clinic visit on Monday and they’re going to monitor it and maybe switch one of the immunosuppressant drugs to a different one (Cellcept to Rapamune). No one really seems to know what to do in these situations including the doctors. What I do know is this, Anya developed chronic rejection in 2012 about a year and a half after the transplant team over at Inova Fairfax changed one of her immunosuppressant drugs. I’m still trying to figure out which ones. This time around, I think we’re going to go with the old saying, “if it ain’t broke, then don’t fix it”. Once chronic rejection starts, it’s hard to stop, but with the skin cancers, as long as we stay on top of them, then from what I’ve read, they can be controlled.

 

7am Monday

7am Monday

Lung function from home spirometer

Lung function from home spirometer

Our 3-month checkup went pretty well too. Anya’s lung function went up to 58%; 16% higher than what it was 3 weeks ago. This is the highest that it’s been in probably 3 years.  For her 6 minute walk, the lowest her oxygen saturations dropped to was 93%, so officially there is no more need for oxygen. She hasn’t been using oxygen during the day for a few weeks now anyways.

Also, the doctor finally gave us a “go home date” of mid to late June. Yay!  He was very impressed with how well Anya was doing. He discontinued a few drugs and ordered the IV central line to be taken out next week.

A = Awesome, not Anya -- Salads are not helping

A = Awesome, not Anya — Love of salads may be partially to blame

After this IV line is taken out, there’ll only be one more line left to take out, which is the feeding tube.  The doctor wants Anya to go up to 115 pounds before they take it out, but Anya negotiated it down to 105 pounds. She weighs 89 pounds right now, so we have a little ways to go.

So, both appointments went well.  The doctor ordered a bronchoscopy for Friday just to see how things are progressing inside of her lungs.  There’s still a little bit of concern with the left side of her airway narrowing.  He mentioned the stent again, but more of a “at some point in the future” instead of a “need to put the stent in now” type of way.  He seems to think that Anya’s lung function could improve even more with the help of a stent.  We’ll see what they think after Friday’s bronch.

What else…biopsies of the lungs have all been negative for acute rejection since transplant.  Culture reports have all been negative since February.  Bloodwork looks great.  All good great news.

I guess it’s time to enjoy Houston.  We’ve been waiting for this moment ever since we arrived here.  Suggestions?

Chillin at Ikea

Chillin at Ikea

Houston Rodeo w/goats & N99 mask

Houston Rodeo w/goats & N99 mask

Post Transplant – Day 61

Not a whole lot has happened over the past two weeks.  Anya had one bronchoscopy last Thursday.  The doctor took her Jackson 4 trach out.  Here’s what the metal trach looked like:

jackson-4-trach

Only the top two metal pieces (metal tube & inner cannula) were attached.  The bottom piece (obturator) was only used to put the trach back in, if it was ever taken out, like during a bronchoscopy.

Here’s what the trach looked like attached to Anya:

tracheostomy4

And here’s the inside to outside connection:

tracheostomy1

Anyways, this thing was removed last Thursday, which means a few things: 1) the doctor was comfortable enough with the way that Anya’s lungs looked that he didn’t feel as though the trach was necessary anymore, 2) there wasn’t enough mucus buildup in her lungs to require a trach for suctioning.  Definitely good news.

As far as the hole in her neck, it should close within a few days and fully heal within 2 weeks.  Believe it or not,  no stitches were required to close the hole.  It just kinda closes and heals on it’s own.  Right now, there’s just a little scab there.    The wound should be barely noticeable after it fully heals.

So, what’s in store for us from here on out?  First up is a dermatology appointment on March 5th.  Unfortunately, one of the side effects of one of these immunosuppressive drugs (Cellcept) is skin cancer.  The type of skin cancer is called squamous cell carcinoma.  Anya had a few spots on her scalp, neck and arms removed with MOHS surgery and liquid nitrogen after her first transplant.  Usually, the spots are isolated and do not metastasize if removed early, so the plan is to stay on top of them from here on out.  This type of skin cancer is fairly common with immunosuppressed people.  Currently, Anya has a few spots on top of her head which are most likely squamous cell carcinoma or pre-cancer.  Hopefully, they can just remove them without the MOHS surgery.

The head of the pulmonary team here thinks that one of the reasons Anya went into chronic rejection after her first transplant is because our transplant team over at Inova Fairfax took her off of Cellcept to combat the skin cancer.  This time around, the transplant team here is going to keep her on this important immunosuppressive drug and just monitor the skin cancer.

Next up, after this dermatology appointment, is our 3-month checkup.  Apparently, the transplant clinic is going to be closed for a few weeks in April, so our 3-month check up is going to be a little bit early.  We’re scheduled for the usual — blood work, CT Scan/x-ray, spirometry, 6-minute walk, then an appointment with the pulmonologist.  Hopefully, all of this will be uneventful.

That’s about it for the next few weeks.  Anya’s continuing to progress.  Here are some pictures from the past two weeks:

Trach is out!

Trach is out!

Becky, Anya, Lauren - So #Blessed to have them in our lives

Becky, Anya, Lauren – So very #blessed to have them in our lives

Sarah, Anya, Heather - Besties visiting from Ohio

Sarah, Anya, Heather – Besties visiting from Ohio

The Three Amigos at the dog park

The Three Amigos at the dog park