Clinc Vist 11 and 12

We have had 2 clinic visits since I last posted and another two bronchoscopies.  The good new is that the last bronc and biopsy showed that the rejection is gone!  This was good to hear, no more heavy steroids or any other annoying treatments for rejection.

I was expecting the rejection to be better because after the last steroid treatment, I had notice a big change in Jane's energy level and appetite which has continued to stay with us.  Her weight is holding steady now for several weeks.

Latest test has shown her kidney function is lower than expected so we are seeing a the kidney specialist at Northwestern too.  About transplant patients have kidney issue in the long run. One of the anti rejection medications does this (tacrolimus A.K.A. prograf). It is a trade off it works to keep the body from rejecting the donor organ but is not without side effects.  They will continue to monitor her kidney levels and may switch to another.  There is a good chance her low kidney levels could be due not drinking enough water...we will see.

They prescribed another 6 months of IVIG treatment to help boost her body's immune system. This is sort of pain because it is given through IV and takes several hours.  And the fist time she had it in April she go massive migraine headache that lasted 3 days.  The next treatment she is actually have having today as I write this blog entry and is ready with migraine medicine if it happens again.  Well at least it is only once every month.

On some more positive notes.  Our geese in the backyard have had there chicks, it cute to see them come out to eat and swim in the pond out back.

Jane was able to host a table and our church's women's tea party event. One friend from our lung transplant support group and one of her repertory therapists from when she was in the hospital where also able to attend.

Jane got a cool crazy cat lady t-shirt from her cousin in Florida (we do have six cats plus one outdoor cat)

Looking forward to Jane's one year anniversary of the transplant which will be on this coming June 4th

Clinic Visit 10

OK since my last entry we have had our tenth clinic on March 9th and a bronchoscopy done on February 23. She also had a acid reflux test done in between all that. The clinic went well Jane is doing fine, they adjusted her anti-rejection meds a little bit based on her blood test. Her breathing functions are doing well too.

The bronchoscopy procedure went without any issues.  While we were in the recovery area we heard someone talking in the room across from us and how they have and a lung transplant.  This not something you hear everyday so Jane walked over and introduced herself.  We found out that our recovery room neighbor was Tony.  Tony is 76 years old and had a single lung transplant done at the Cleveland clinic 4 years and is doing great! He was in the hospital for gall stones unrelated to his lung transplant.  It was very encouraging to see a lung transplant recipient doing so well after 4 years!

After the bronchoscopy she was feeling pretty tired all week.  And the results from the bronc show that her low level rejection is still going on.  This means we need to do another round of steroids this time a stronger dose. She got her first of 3 doses starting  on March 1st. I could tell this was a stronger dose, it made her very angry during the day (roid rage...hehe).  But was back to normal in few days.  She will have another bronc in  couple of weeks to make sure the low level rejection is gone. If not there will be more meds for her to take.

Since the last steroid treatment Jane has been doing great physically has a good appetite and good energy.  I am seeing get around the house kind of like she used to before. I am hoping this improvement is a sign to the low level rejection being gone...we will see.

Her cough is finally all gone.  We believe it was all due to allergies, as she has now been on allegra and Flonase for a while.

The acid reflux test was kind of a pain, she had to wear a small tube down her nose into her stomach and have it on for 24 hours.  She said it was quite annoying. Below is a selfie I took with her wearing the tube.


Acid reflux test is important because acid reflux can damage lungs.  It is the case for everyone not just lung transplant recipients….yep they are always on top of everything.

I will make another post after the next bronc.  Thanks for everyones continued friendship, support and prayers!

Clinic Vist 9

We had an interesting few weeks.  Jane started the intravenous steroid bolus for rejection about middle of January.  She had to do it for 3 days in a row (then followed by steroid pill taper) and it lasted about an hour and a half each time. Which went well for the most part, she got some of that old edema (swelling) back in her ankles cause of all fluid along with trouble sleeping. But we had some positive effects to the steroid too. It jump started Jane’s appetite.  She very close to eating normal sized meals again which is helping gain her weight back. Today long after the bolus she still has her appetite.   Another bronchoscopy and biopsy will have to be done in March to make sure the rejection treated by the steroids is gone.

Jane with,  Dr, Ankit Bharat

Right after the steroid bolus she started getting a bad cough, and here breathing number were starting to drop. All of her other vitals were fine and she did not have a fever. We called transplant team in and they asked us to come in week sooner for the next clinic and they will do a chest x ray. As the appointment date approached she was feeling better so pushed appointment back again.  Then in the next couple days the cough traveled to her chest and sounded horrible.  We made a same day appointment with her primary, who listen to her lungs, said the sounded crystal clear.

At the clinic visit last Wednesday at NW Hospital all the tests were good and her chest x-ray has looked the best it has yet since the transplant in June. Both of us were very glad to hear as we were worried! They are thinking the cough is due a sinus drip cause by allergies (which she had before transplant), she is going on Allegra and Flownase to help it.

As of today breathing is still not back what it was but it improving and cough seems to be getting better.

Before we left while waiting in to get a Starbucks coffee we got a special treat, ran into her transplant surgeon.  Here is a picture of Jane with the surgeon that did her transplant,  Dr, Ankit Bharat

We have a mild winter here in Chicago, so hoping for an early spring! Will blog again in March after the bronchoscopy.

Biopsy results - A1 rejection detected

The title may sound bad but this is a low level minor rejection Jane has going on detected by the biopsy.

Not the news we wanted to hear. However this happens to just about everyone within the first year of lung transplant and is very treatable.  It will be treated with an aggressive dose of steroids which Jane started this past Wednesday.  She is tolerating this well with almost no side effects.  It has jump started her appetite (one of the side effects) which for her is a good thing for gaining weight.

We have a home health-care nurse giving the steroid IV a home so we didn’t have to go into the hospital. Overall, Jane is doing well and continues to get better. 

The following link explains her rejection well. See the section where they talk about “minimal rejection is graded as A1”. This is Jane’s case.

https://secondwindstl.org/who-we-are/articles-by-dr-hacheem/rejection-and-lung-transplantation/

Clinic 7, 8 and the dreaded bronchoscopy

Jane and I on Christmas Eve

Wow sorry I see it has been 2 months since my last update.  Since then a lot of things have happen all good for the most part.  At this time we have had two more clinic visits and survived the dreaded bronchoscopy! Clinic visit number 7 was in mid December and number 8 was this past Wednesday...both went well.  Jane’s breathing numbers continue to improve.  We passed on the big family gatherings to avoid germs and had small gatherings with friends.

 We put up simple decorations this year for Christmas and still have everything up now. We plan on keeping them up until late winter. 
 

Tiny Christmas Tree
 

On December 26th the Oxygen company came by and took away all of our oxygen equipment!  What a milestone this is. Jane has not been on or need oxygen for the past couple of months but we kept it around because it made us both feel better. We have relied on extra oxygen for so long, it didn’t feel safe not having it around.  But by now we have gotten pleasantly used to it.


On issue we have had, over the past few weeks in the evenings Jane has developed an annoying tingling and itching all over her skin, especially her feet.  This is very uncomfortable and have been making her evenings not so nice.  The doctors have prescribed something for this we will try it this week.Because of this she has been unable to wear her BiPap Machine at night.  Thankfully her breathing and CO2 levels are doing just fine. with the use of the BiPap.  After talking about this in our recovery group we are finding that this tingle and itch is common reaction to some of the anti-rejection medicine.

The dreaded bronchoscopy was done this past Tuesday Jan 12.  We were very nervous going into it as the last time this was done she had to be put back on a ventilator.  But that was 6 months ago and she is a lot stronger now. Yep and everything went fine she woke up from it breathing on her own.  The took samples from the lungs (biopsy) to test for any rejection. We don’t have the results yet but we all expect them to be fine.
 

There were also no infections in her lungs so at the 6 month mark this means she can stop taking her antifungal medications. woo hoo that is 4 less pills to take a day!   And finally after ultrasound testing all of her past blood clots gone. This made the doctors take her of the blood thinner shots in the stomach twice a day (those shots were very painful) woo hoo again!

I will update the blog again after our next Doctor's visit Clinic number 9 in mid February

Last but not least I would to include some littler box art work from one our cats Heidi (a male cat).  He peed a facsimile of Reindeer this Christmas season. :). So either her really likes Christmas or he is just being a Scrooge...."Bah hum bug, I piss on Rudolph the red nosed reindeer!".

 

Clinic Visit Number 6

From Jane:

"Another great monthly checkup at northwestern lung doctor's office.  They are thrilled with my progress and my breathing numbers. In January they will do a 6 month bronchoscopy to check for any early antibody rejection.  Thus far, no indication of this!  PTL amen! my right diagram is fully working,  this is miracle from God!  Doctors cannot figure this out! It's wonderful to see their smiles with my progress. What a blessing!  We have much to  be thankful for! Love Jane and Jude" 

Yes another good visit. Blood tests show that her body has not created any anti-bodies for the donor tissue which is great news.

We are happy that the bronchoscopy has been delayed until January 2016 because her breathing numbers are so great at todays clinic.  If you remember the last time Jane had one, it did not go well, she had to be put back on the ventilator for a few hours (total-respiratory-failure). Because of this we are a little nervous of having one and glad it is delayed.  However, we cannot avoid the bronchoscopy forever, as this is the only way to know for sure if there is no more rejection.

Speaking of bronchoscopies

Speaking of bronchoscopies here is a video of one I took back in July.  Back in those days she still had her tracheostomy so it was a super easy procedure. I am posting this because you are able to see the stiches where the donor lungs were connected which I find very fascinating. Took me awhile to get around to this posting but they let me watch and record Jane's bronchoscopy back in July, 2015. If you look closely at about the 20 second mark you will see some green stiches and a patch of whitish tissue. The green stiches are, yes you guessed it, where the donor lungs are attached to her left bronchial tube, wow! The white tissue is normal scar tissue at the location of the donor lung connection. Then you will see the camera go down into one of the donor lungs bounce around into deferent levels of bronchial tubes. The reason they did the bronc on that day was to flush out mucus (back then she did not have to strength to cough up) which is what the water splashes you see.

A couple of small disappointments. 

We were hopping they would remove the need for the Lovenox shot but we have to keep them going until January.  The reason is that they want her to take it for 6 month period which will be up then.  So a few more weeks of those yucky stomach shots....ouch

Secondly we an idea of driving down to Florida over Christmas break. Would be in to be in the presence of palm trees instead of the cold and the snow. We were looking very forward to it.  However the transplant team feels it is too early for Jane to go on such a long car trip. Perhaps in a couple of more months.  Oh well we will have to make it for next year.  And now with the gift of new lungs we have many more years to live to go to on Florida vacations!

1st Year Celebration and Appreciation Event

 There were several other transplant and pre transplant patients at this event and it was very nice to meet them all, including others working in the program who we had not met. Jane was transplant number 15 at Northwestern hospital and had the longest hospital recovery time (96 days).  The other transplant patients we met all had a hospital stay of about 2 weeks.

However regardless of her long hospital stay, now she is doing quite well and has surpassed everyone's expectation for recovery. She still has a way to go before being back to normal and being self sufficient again.  We expect Jane to be back her normal strength in about 9 months to a year.

"Northwestern lung transplant meeting & thank you. My speech went well & new transplant listed were inspired by my story. Yes, I planted the Jesus seeds. They want me to speak again." -Jane

Listen to her speech below.

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The lung transplant program has performed 22 transplants since being approved by UNOS in April 2014.  In October 2015 the program underwent a CMS site visit for initial approval. Transplant number 22 was performed during this event. Surgeons were working hard doing a another double lung transplant in the operating room a few floors just  above us.

"We express appreciation to all that were involved to help us launch the program.  There will be a few brief comments by the program directors, Dr. Sangeeta Bhorade and Dr. Ankit Bharat.  Come meet the lung transplant multidisciplinary team, visit with our patients and hear their stories." -Northwestern Hospital