Born into eternal life

 Dear Friends,  I am sad to say my wife, Jane, has passed (but born into eternal life with Jesus) away yesterday evening at 8:15pm.

I know most of you are aware that she had a double lung transplant back in 2015.  The kicker here is that her lungs were doing GREAT.  The new lungs gave her new a life that she enjoyed for six years.  3 and a half years ago we moved Tampa Bay, Florida where we enjoyed the year round summer and many visits to the Gulf of Mexico (which was just 1/2 mile from our house). Tampa General Hospital took over her post lung transplant care.  Each clinic visit only showed her lungs were doing great!  Doctors were telling she will get many many more years from her new lungs.

Unfortunately, last year about this time she was diagnosed with Stage 4 colon cancer.  The cancer was caused by a genetic defect inherited from her mother who also died from colon cancer.  I did not share here then, we assumed she would beat it just like she beat her lung disease with the transplant.  The cancer was in full remission for 5 months after a surgery and several grueling chemo treatments.  The remission allowed to have a great Thanksgiving and Christmas in 2020.  We were very positive we beat it.

It came back just ~4 weeks ago with a vengeance and there was no stopping it.  She went to the emergency room 2 weeks ago with stomach pains were scans show it was back (Scans just a month before were clear).  This time she decided not to do any more treatment.  A week after that she was unable to eat or drink and decided to enter hospice at home, she came home this past Friday  under hospice care.  Spent a great weekend with friends and family visiting.  By Monday, she was not communicating much and by Tuesday evening yesterday she peacefully passed away at home.  I was able to hold her hand while she was born into eternal life. 

Through her cancer diagnosis , treatment and final days here on earth, neither her new lungs or courage ever faltered.  

I took this picture on my birthday in 2001, I was going out with Jane to a Christmas party at uncle's house. I remember Jane went out of her way to make that day very special for me. 

The flu shot

Since flu season is upon us I want to pass along this article to my friends and family, especially those of you who know my wife Jane's lung transplant story.

Jane is told to avoid contact with people who have not had the flu shot because of her compromised immune system.

Herd Immunity
https://www.youtube.com/watch?v=ZuiHFg_nfnE

Clinic visit 13, Rejection Free

It has been two months since my last post.  Since then there has been nothing but good news to report.

The most important being that the results from a bronc/biopsy show the same results as before.  No more rejection.  With these results, next bronc/biopsy date will be six months from now unlike having it done every month or so (which was getting to be major drag).  Further more our clinic visits which were once every month is now reduced to once every three months!  So we have come quite away from a year ago today when Jane was still in the ICU trying to weaned off the ventilator.

Kidney function is better but will be closely monitored.

Looking at the calendar we are finally one year out from the transplant! This is big mile stone for transplant patients, and especially for lung transplant patients,  On the our one year anniversary on of our best friends gave Jane a party to celebrate.  Below are some pictures from the event.

Jane is in the white blouse and flowery long skirt.  I am in a yellowish Nike shirt. Go to this link to see all of the pictures (All Pictures).  See a movie of Jane blowing out candle with her new lungs.

The infelicitous disease doctor gave a talk at our latest lung group meeting. We learned the traveling on airplanes are OK as long as you are careful to wipe everything down.  The air on airplanes are cleaner than we thought as it is filtered well.

Two things we are to watch out for this summer. One is always wear sunscreen, skin risk is much higher for transplant patient on the immunosupresant drugs. Secondly avoid mosquito bites. The West Nile virus still prevalent in the Mid-West.  The infelicitous disease doctors told us that last year 12 transplant patients got West Nile Virus and two of them died!

Being the crazy cat people we are we ended up adopting another stray cat that showed up at our doorstep.  We were on track to hand her over to the shelter but she was too nice let go.  She gets along very well with our other cats see picture below.

We are looking forward to a great summer!!!!!

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/