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/

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



 

 

Clinic Visit Number 5

Update from Jane:

Good news today at northwestern doctors visit. No new blood clots! Lung team is thrilled with my progress. They will meet about discontinuing my blood thinner shots to tummy. Seems likely to stop shots! Also, northwestern is hosting a dinner November 3 for lung transplant patients, those waiting for transplant and their families. It's also for all the doctors and medical team to see where we are in our recovery. They asked me to be one of two speakers about my transplant experience. I represent the tougher recovery and they wanted my perspective. I will be a seed planter for Jesus! :-) how cool!


We are really indeed hopping they will stop the Lovenox injections (blood thinners) to the stomach as they are quiet painful...ouch!  Needle is big and the drug causes a strong burning sensation that lasts for a couple of minutes.

At home Jane continues to improve little by little still needs no oxygen, I believe sometime this week or next the pharmacy will come and remove all of our home oxygen equipment! Seems weird not to have the equipment any more, we have gotten so used to it. Physical therapy is still coming about twice a week at home.  They have decided that physical therapy be continued at home for the foreseeable future rather than Jane going into outpatient rehab (This will reduce her exposure to colds an flus this year)

Although, they said Jane's hospital recovery has been the hardest of all their lung transplants at Northwestern, her recovery since going  home has been better than some patients. This is one reason Jane will be speaking at the dinner next week November the 3rd.  I will take a video of her speech and post here on the blog. Jane and I looking very forward to it and meeting other lung transplant patients and more of the transplant staff.

Clinic Visit Number 4

This update is directly from Jane. She sent this text message to friends today telling of her 4th Clinic
 visit today.

This is selfie of us taking a walk this afternoon

Doctor visit went ok. Infectious disease doctor was thrilled at my progress. ...he was there from beginning to see how bad I was. His smile was incredible.  We arrived for my Doppler vascular exam 15 minutes late at 1:15 & they cancelled me!  I had a 2 hour appointment! They said they took the next patient & did not know if they would get to me if we waited.  We found this difficult to believe that next patient 2 hours later was already there. I  pleaded with them...no sympathy!  I have to reschedule.  Wanted to know status on no blood clots.  They called tonight & adjusted my medications.  I am to stop taking daily water pill due to it affecting my kidneys per blood work today.  Will reassess in 2 weeks.  Hopefully my swollen ankles will not bloat up again. Two other  antibiotics were reduced to 1 per day. My antibody levels are good....my body is not rejecting these miracle lungs! PTL! A more detailed antibody level result will take another week. What a blessing!

 

Lung doctor was thrilled with my progress. Labs took 8 vials of blood. Pharmacy reviewed my medications.  The interviewer for government agency certification process for NW  was there.  They interviewed me and Jude about my experience with the lung team. Have a blessed day!  Love Jane and Jude

Next update will be two weeks from today on our 5th clinic visit.

 

OK had to post this picture of Lamborghini I saw outside the Northwestern Hospital when we were leaving!

Graduation Day (Third Clinic Vist)

That is what we were told in our clinic visit today.  We are graduating you to only having to come for clinic check ups and tests every other week now. A sign of how well Jane is doing these days. Great to hear because getting out to Northwestern Hospital from Oswego IL for clinic visit has each been and all day trek.

In the past week I have seen Jane get more strength, better breathing and better balance. She is able to walk without a walker now as long as she stays close to walls. And continues to not need any supplemental oxygen. It is really great to see all the progress and graduation she has made over her recovery and over lung disease. I remember her before her transplant, just taking a shower would wipe her out for the morning.  I remember before her transplant she preferred texting over talking because talking was so much of an effort. I remember before her transplant constantly coughing whenever she exerted herself.  I remember before her transplant always making sure we had enough oxygen tanks for places we went. These things and others I remember are gone now with the gift of new lungs!




Attached are picture of trees Jane planted last fall (we lost a lot of our trees to some Asian bore beetle). Since we have been at the hospital all summer long we have missed seeing them grow but nice to see they are doing well.

We have had great support this past week from friends.  They have come to visit bringing meals and making meals.  Their presence have allowed me to get out and do errands, groceries and even to the gym.

Looking forward to another 2 weeks of great progress.  Our next clinic visit is on Wed, October 7th I will have another blog entry then.  Thank you for all you support and prayers.

Seond Clinic Today

We have been making great progress since I wrote last. Jane seems to be getting stronger each day. I see that on the Bi-PAP machine she is breathing in more volume than she was breathing a couple of weeks ago.

This past Saturday, Jane was able to shampoo hair own hair since the transplant. She was excited she could do so!  Before her hands had been more stiff and it was painful to try and rub the shampoo in her hair herself. Seems like every few days I can notice there is more Jane can do

We are fortunate to have church friends visiting and bringing meals so we (I) don't have to cook as much. Jane's appetite has not been the best but getting great food is starting perk up the old appetite.

Today is our second clinic visit.  Same as last time things are looking good, Jane is looking good.  Transplant doctors can see an improvement in her from just days ago when she had her last visit.  X-rays still looks good as well as blood work.  Vitamin levels are a low because Jane had not been taking the vitamins.  She will do better from now on.

Next clinic visit will be one week from today.  That is when I will do my next post.

First Few Days and First Clinc visit

So we are at home now and I must say we do like this better than the hospital and Jane is doing much better at home.  Although I personally miss all the work done by nurses there...cause I have to it all now :).

At home she has more of an appetite and has been busy walking around the house and doing things all sorts of little things.  There are time were she is up on her feet with the walker a good hour or more.

Frist night and day was difficult, give all meds and shots logging vitals all seem a little overwhelming. As well as keeping track of all the medications. It has been hard taking all the medicines on time and tracking.  Attached is picture of Jane's weekly pill box. But after watching a few YouTube videos on taking blood sugar, giving insulin and other medicines and the first night or so of muddling through it, things are falling into place and becoming easier.  Jane's breathing has gotten
better too I can tell from all the things she is able to do without it tiring her out so quickly.

We had our first clinic visit today. Jane's x-rays is much improved she has more lung volume now which is making it easier for her to breathe.  She is able to go without supplemental oxygen and is on room air most of the time.  She needs oxygen now if she is exerting herself.  Both of and our doctors are very please with the progress Jane is making!

Next Wed is our next clinic visit.  

Home at last

Yep home at last. We are home after 96 days in the hospital.  Been busy settling in Jane is doing great!.  We have to go back for our first out patient visit this Friday the 11th. Routine stuff and tests We will have an appointment once week for the next 4 weeks then it may cut down to once a month.

I want to thank all you who have shared this journey with us. Many of your have thanked me for writing these updates, for me it has been a pleasure. Being able to share what was going on from day to day with you all was like having a friend there with me every day.

 

This will be the last of my daily updates now that we are home and things are medically stable. From now on my updates will come about once a week or so and will be via a blog (I will give the details soon).  Thanks again for all your prayers and support.  Jane and I could not have done this without friends and family like all of you!!

Good Riddance

As I  went back home to bring our car back to hospital today I can feel the proverbial ball dropping as there  is less than one day before  going  home. We are on track for leaving tomorrow about noon. For the past several days we have had no medical issues come up...Jane has been pretty stable and improving. This what doctors want to see before  we head home stability. 

I asked  Jane if there is anything  she would like to add to tonight's update...she said  good riddance to the hospital.  :)

Thank you for your prayers!

Lovenox shots in the stomach

As of last night I have been giving Jane her Lovenox shots in tummy.  First time I did something like that, it went smoother than I thought.  Jane takes Lovenox as a blood thinner.  She has to take this kind because it stays in your system for just 24 hours. This comes in handy if Jane needs any sort of surgical procedure. The downside is that it is shot, and it is quiet painful. She can't take an oral blood thinner as it takes 7-10 days to get our of your system.

Some of you have asked why she is also taking insulin shots. Jane is not a diabetic but all the rejection medications she is taking gets her sugar out of wack. Once her medication get reduced over the next few month she should not need insulin anymore.

Just 2 more days to go before we are able to go home.  It has been exciting preparing and planning. Thank you for your prayers!

IVIG Treatment Number 3

It is that time again.  IVIG treatment for anti-body rejection.  Jane has had two these already since the detected anti-rejection earlier. This treatment has minimal side effects the only annoying thing is that it take about 4 hours to administer and during that time you have to connected to an IV.  Since then there has been no new rejection which is a good thing.  So this another reason it was a good idea to stay for the weekend, If we left Friday would have to come back in early next week to get this treatment done. Since were are here she got the treatment today.

Not much more to report.Doctors like her progress. Jane made some phone calls and did some texting. And is very anxious to get home.  3 more nights left!

Mary Lewis

Another day of not much going on just more signs and feels we will be home soon.  They did come by and put pills in a pill box but it was only for one week at a time. So it was not the great big pill box I imagined.

Please pray for friend named Mary Lewis and her family. She is a friend of Jane's from a Facebook lung transplant group who lives in Philadelphia.  Mary is waiting for new lungs too.  When Jane got her transplant Mary was excited for her and would call me each day and ask about Jane ( she doesn't text.)  Each day Mary had kind words of encouragement for both Jane and I when things were rough and I grew a custom to that. Once Jane started to get better I did not hear from Mary. I didn't think too much of it but it was odd.  Unfortunately I learned from another in that lung group...Mary succumbed to her lung disease and passed away.  That is why she stopped calling : ( ...I was very saddened this.  Was a few weeks back but is on my mind also today.

If you never thought about being an organ donor please do and become one...there is such a need out there! One donor can save 8 lives like Mary Lewis.