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.

Giant Pill Box

Not much going on today. Walgreens Pharmacy delivered Jane's prescriptions for the month. Attached is a picture of the meds they delivered. Tomorrow they will train us how to get this all in a pill box I hear. We will see.

Jane voice is better today sounds stronger...perhaps it is the thought of being home soon.  Swallowing pills have become easier, she takes them after meals which helps a lot.

Things medical are winding down...good to see! Today we are reminded of how very thankful we are for the gift of life these donor lungs have given us. 

Microsoft Windows

We have missed so many release dates I feel like a version of Microsoft Windows!

So we are not quite making it out of here this Friday.  We will be coming home after labor day weekend.  The transplant team feels uneasy discharging us before the 3 day weekend. If we had an emergency after we got home (I cannot think of what) there would be very thin hospital staff around to assist us anywhere.  So we agreed to stay through the weekend.. Next release date is Tuesday September the 8th.

Other than that was a good day today. Jane had a good appetite for today (for her) and was not that nauseous when taking her pills

Got more education about being at home.  Today we were trained on the details of using our BiPAP machine.  And  today Jane finally go fitted with a BiPAP mask that fits great. Got trained how to give insulin shots and check blood sugar as well. Will get more training tomorrow.

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The prep

We started preparing and getting training for going home today. Which makes our discharge date seem finally real.  The material doesn't seem as overwhelming as they said it would be. Perhaps by spending 90 days in hospital we learned a few things. I may have to give Jane shots at home which I am.OK with but she doesn't trust me :)

We are still shooting for Friday.  So far things look good for that.  Thanks for everyone's prayers!

Broken GJ Tube

Wouldn't you know it right after we start to get some use out of the GJTube (for crushed pills), it stops working!!! It has clogged up in a way no one can fix.  Only solution would be to go back in the OR and get it changed out.  Thank you no. We are too close to going home to have another procedure go a rye. Jane is up for that an will start to swallow pills rather than going through another procedure. She swallowed all for tonight without any problem.  We will get the GJTube removed at a later date now that we don't use it.

Being Monday it was busy day lots of visits from doctors, nurses.  We are still on track for getting out of here this weekend.  The physical therapists cleared Jane for going home. Still need clearance from the transplant team medically but it seems like that will be the case. We will have meeting with them this week to finalize everything.

We finally got doctors to set up our home BiPAP machine so we will try it out tonight. We had some more friends from church come and visit which made for a fun after noon.

The Bandage Change

This morning Jane surprised me.  She got tired waiting for the nurse to come by to change her bandages and decided to do it herself. She walked over with her walker to bathroom sink stood there and started to change all her bandages herself. And she did it! I watched and gave her a hand holding things now and then but she did all herself. 

This a major a accomplishment and shows more evidence she is ready to be home soon. I told the nurses and transplant doctors all were very impressed. 

Doctors still have not come by fine tune our home BiPAP machine so we will be at the hospital for another day or so.  However taking with transplant doctors and considering how things are going they are thinking maybe we can skip rehab and go home from the hospital. That would put our discharge date to Friday or this weekend as we had planned. 

Jane and I are both in agreement with that!  They will have the hospital physical therapy make an assessment of Jane's abilities tomorrow and we will see. 

Pills down the tube

Jane is was still feeling nauseous today especially when takes all her pills. So they have decided to crush all her pills a give them to her through her GJ Feeding Tube. Which has worked out great today. Less nausea and more of an appetite. And no pills to swallow.  We can do this until she is able swallow all her without nausea. 

Doctors have not come today to refine our home BiPAP so we cannot go to rehab until Monday. They want to refine settings on machine and then have Jane sleep on night on those settings so see haw things go before releasing her to rehab. Not sure if this pushes out our release date of next weekend. But we will insist it does not. 

Other than that good day. Did some walking around the halls. She still not happy with how quickly she gets tired out. But I reminded her how far she  has come!

Trilogy BiPAP

Today Jane was feeling very nauseous so wasn't able to eat much breakfast or lunch but had a little bit of dinner as she felt better. They delivered our home bipap machine to the hospital room. So we can learn how to use it before we get home.  Doctors will set up tomorrow and we will try using it Saturday night.  

We will go to rehab Sunday and hopefully be discharged home next weekend. That's our hope. 

Boring Day Today

Today I was actually a little bored for the first time. Maybe because our minds are set on being home. But it was.nice not to have much medical excitement.

Today also first time Jane ate little bit at breakfast lunch and dinner.  We walked a few times in halls as usual. 

Quiet Jane news day today. Thanks for everyone's prayers!

biopsy results.

Finally got biopsy results. Happy to say zero, no, nada, no new rejections. Plus the lungs in general look great.  That news made the day overall nicer. Jane is feeling and breathing better today. Also, we had a visit from a friend form church and had a good. 

Still on track for being home in a week or so. Should be going to rehab late this week.  

Testing is showing that Jane's right diagram is not moving much. This could explain more of why her  breathing is not where they expect.  Looking back on testing done on her in 2013  before transplant right diagram wasn't moving much then either.  They don't think this too much of a big deal. But plan to look more into this in the future. In general Jane is on the right track to have her breathing to slowly improve as time goes on diagram or not.

Quite Day

Had a quiet day today. Which fine because of the crazy day we has yesterday.  Her breathing is a little more labored today...that's because of the bronchoscopy and biopsy yesterday has caused air irritation. Her voice is scratchy for the same reason. All the doctors are surprised and very happy to see her complete recovery from yesterday's respiratory failure. 

Now we are gearing up to go home soon. It is at a point where staying in hospital is becoming more of a barrier for her recovery and the doctors agree. We still don't have results back from biopsy yet should have tomorrow. 

Physically therapy at hospital has been light as they see Jane is able to most basic things again now herself. 

Right now looks like we will be back to rehab in two days or so. Then about a week there then...onto home, finally! Assuming no more weird complications. 

Total Respiratory Failure!!!

Bronchoscopy/biopsy did not go as planned but it ended up being a happy ending. The doctor came to see me after the bronc was complete, said Jane did not do well and had full respiratory failure.  So he had no choice but to put her on the ventilator to keep her breathing.  They had already whisked her away to ICU by this time. The doctor who did this is considered the best at Northwestern for doing broncs. He said he does not know what happened and can't explain why she crashed but she crashed instantly and very badly. He looked upset and bewildered. No one wanted Jane back on the ventilator because she may become stuck on it.  But there she was back on it!

I was not happy and seeing us back to square one in her recovery. I called Jane's cousin Carol who had encouraging words and prayers.  When I got back to the room I woke Jane up and I could tell she was really pissed off...this is a good sign I thought.  Then she was like WTF! and wanting the ventilator tube pulled out her mouth immediately.   They did not want to take her off but after seeing Jane's reactions and alertness for a few minutes they just pull the tube out.  And Jane a little angry but fine :) breathing on her own.  This is all of your prayers and God confusing the wise. I guess that makes us the fool  who God used but I will take that.

We are now out of the ICU and back in our room resting after a long day! We will get the biopsy results tomorrow.  

Tomorrow at 10:30 am

Jane is feeling less nauseous today. So able to eat a little bit of food and drink her boosts. Wen for a couple walks in hallway for exercise.

Tomorrow at 10:30 am  Jane has her 60 day bronchoscopy and biopsy. It's pretty routine but Jane is very anxious as all procedures have ended up in complications. So please pray for peace of mind for Jane, no complications and no new rejections. We should have results of biopsy that day. 

feeling nauseous

Jane was  feeling nauseous last night so she didn't sleep well. So today we took it easy and she took extra naps. Not much of an appetite today either. The nausea has gotten a little better as the day went on. Her nausea is caused by her rejection medications and she does take anti-nausea medicine for it. Some days it isn't enough. Hopefully tomorrow nausea is better

looking very forward to being home

Good day today. Little bit of physical therapy and rest. Jane is doing good. We even caught a glimpse of navy pier fireworks out our window.  Both of us are looking very forward to being home when this is all over. Thank you for friendship and prayers and support!!

labs are looking good

Had a good day today. Jane's labs are looking good. They are not bothering to check CO2 levels because Jane is physically feeling and looking much better. Couple friends from church surprised us with a visit in the morning which was a nice treat!

We found out we are scheduled to go back to rehab next Monday or Tuesday. Which we are fine with because we are comfortable at hospital. The physical therapy is as much but Jane and I make up the rest on our own. And we get to hang with Ernie the service dog :)

Jane is scheduled for her bronchoscopy Monday during which they will do her a lung biopsy to check for any new rejection.  If rejection is present they will give her the appropriate treatment for it. We are a little anxious be every medical procedure seems to have it complications regardless of how simple. 

cystic fibrosis

Ernie the service dog was back today ( I thought his name was Eddie in earlier updates). We love to see him and we found out today that his mother (owner) has cystic fibrosis and is on the list for getting a lung transplant! We were able to chat with a couple of their family members. Jane shared her transplant testimony. 

Had easy going day no tests. We walked in the halls four times throughout the day. Jane is doing good had more energy today.  They may send us tomorrow to the rehab center or if not very soon. 

Both of us personally like it here better at the hospital...sounds weird to say. 

mechanical soft to regular

Today was just like yesterday expect no tests and no Eddie the service dog. Jane is resting up and gaining strength to go and finish up her physical therapy at RIC. We don't know what day we will be sent back but I am sure by end of the week.

We got her diet upgraded today from  mechanical soft to regular...so now she has more hospital food to choose from. Which is not as great as it may sound . But either way if Jane ever get a craving for something I can just go out and get it. Like today it was for a  McDonald's sunday. Which we both had for dessert. 

Eddie

Pretty much an all good day. CO2 levels continues to drop today is at 60. Jane has more energy and less sleepiness today. Appetite is still there.  It's good to see her like this. 

CT scan was done of her lungs again to check fluid status around her lungs.  We haven't gotten any word back on results.  An ultrasound was done of her body checking for new blood clots. None found and old one in her is dissolving well. 

 

She is getting another unit of blood today to top off her hemoglobin...that will give a nice energy bump. Her hemoglobin did drop (6.9) they believe cause of many blood draws she has had. 

We were visited by friends and earlier in the day meet a cute little service dog named Eddie. Picture attached. 

 

Chiago Air and Water Show

Quiet day today. We were able catch a little bit of the air show which was fun. 

 

Jane will be on the BiPAP (I was calling it CPAP in updates earlier by mistake) tonight again to see how much more co2 can be removed. They want to a level in the 40s. Currently her co2 levels are in the 60s. She, like yesterday more awake today and has more energy.

Will be an interesting week to see how much of the co2 we can get rid of.

 

Thanks for everyone's prayers!

Another moving day

Another moving day. They moved us out of ICU and into a regular hospital room on pulmonary floor. Good timing because this will give a decent view of the last day of air show tomorrow. 

They have been able to get Jane's CO2 levels a little lower by using the cpap machine over night. Also tests show her kidney function is improving.  Which equates not needing to be in ICU

The transplant team has been hard nosed about all her tests so the fact they OKed  her moving out of the ICU says a lot about her wellness. They do believe she is malnourished needs more protein. Good that she is getting her appetite back. 

Our new view

 

We will stay here until she get more strength back then it's back to RIC to finish physical therapy so we can go home!

ham cheese McMuffin

Our second full day back in the ICU.  Got a little bit of physical therapy today...this not a rehab place so we can't expect the same. We will doing more on our own.

 

Today for the first time since the transplant Jane had a little bit of an appetite. She had a craving for a ham omelet and hash browns. So I went out a got her ham cheese McMuffin and hash browns at McDonald's. She ate about half and was very satisfied. She ate more during the day too as well as drink her ensure. 

 

We have two medical issues the transplant team wants to get stable before we get can go back to rehab. Be able to get more CO2 out of her system by using the cpap and make sure her kidneys are ok since her excess fluid is not coming off. They have tests set up this weekend to check.

 

Physically Jane looks great today.  A little sleepy at times but overall very wake and alert. We are looking forward to breaking out of here soon!

CPAP is working

This morning Jane's CO2 levels did go down but not very much but she is physically 10 times better and more awake and breathing better. So they are agree CPAP was a success. She did get a good night's sleep finally so that helped very much...she was sleep deprived. Wearing the CPAP allowed her to sleep better.  

 

Last night when they went to do a fluid drain on her lung the ultrasound showed not much fluid so they did not have to do the drain. 

Lung transplant team is happy to see her progress but want to do more tests on her while they have her in the ICU. They still believe she has water around her lungs and doing a CT scan to verify and pinpoint location. (We will get results of the scan later tonight).  Also they believe  her CO2 levels can be brought down even more by adjusting the levels of her CPAP. Which they are going to study. Seems like we will be here for another two days.  But good that they have a handle on this. 

Transplant team is not going to do bronc and biopsy yet until they believe she is more stable. Sometime later week is fine. They are not concerned about new rejection because of the big improvement she had last night. 

So overall things look better today. Jane is wide awake and able to have a conversation with me without dozing off. Her muscle tremors have reduced as well. So it was CO2 overload, sleep deprivation and fluid.  She will probably need to wear this each night. But no big deal it is just a sleep apnea mask. Thanks for everyone's prayers. 

Jane's blood CO2 was too high

We had a bit of a setback today as we got sent back to northwestern hospital because Jane's blood CO2 was too high. This comes from her breathing not doing good enough job of expelling it. We realized something was wrong when she was super sleepy all the time and she was starting to have more body tremors. 

Here now at northwestern they believe the main problem is still fluid around her lungs. The fluid is from all the excess fluid in her body. They are correcting the high CO2 by putting her on a CPAP machine to help her breathing. Preliminary tests show it is working. Also they are doing procedure on her right now to physically drain the fluid around her lungs with a needle. 

Tomorrow morning they will do a biopsy to rule out that the lung fluid is being caused by more organ rejection. 

They are investigating the tremors too. First guess is that it's caused by high CO2. Sleep deprivation (Jane has not been sleeping well at all) or vitamin deficiency. If not they are dedicated finding why it's happening. 

More testing will done on her kidneys too make sure they are working correctly to flush out fluid. 

 

It was not fun being back right where we started. But the doctors tells us it's a means to end of these problems. That is what we pray.

IVGI treatment

This morning we physical therapy and in the afternoon an  IVGI treatment.  If you remember this was the treatment she had to take for the antibody rejection she had a month ago. Jane will have to take this treatment once a month for the next 6 months. It's pretty simple she just needs to have it administered through an IV.  Doesn't have any side effect just takes a couple hours.  

 

Today the transplant team feels the biggest problem is the fluid retention. Her legs and lower body are still swollen which makes it hard for her to walk and that same fluid is in her lungs making it harder for her to breathe and still needing a little oxygen. They don't have a quick solution her body will have to get rid of it over time. Getting back to normal eating and movement will be what helps that happen. 

 

Thursday the plan is to do a bronchoscopy and biopsy of her lungs again to make sure she has no new rejection going on making it hard for her to breathe.  So for that she will go back to northwestern as an outpatient.

denied parole

We have been denied parole they have extended our release date for another week. 

We were kind disappointed cause we were amped up to leave this Friday.  But we understand why. The lung transplant team would like us to stay another week for Jane to get stronger before going home. They want to do more tests for rejection as well before we go. Our new release date we think will be Friday August 21st. Will know for sure tomorrow. 

Getting another week of therapy is good Jane will be even stronger then. They also will have more time to train me for caretaking.  

Nose is still not bleeding today which we are happy about.  And had good day of physical therapy.  Thanks for all your prayers and encouragements!

Hoping for another good night's

Today we seem to have the nosebleed under control (knock on wood). Doctor removed the tampon this morning it started to bleeding again but was stopped by holding pressure on nose and using ice. So the problem was blood thinner. Today it was out of her system so her blood clotted. If by tomorrow the nosebleed does not return they will start her on blood thinners again.

The reason she needs thinners is she developed a few blood clots when she was bed ridden after the surgery. Those clots have all gone but protocol call is keep on blood thinners for at least three months after clots are first found. So she has a few more weeks. Unfortunately these are kind she has to get injected into her abdomen skin 2x a day...they are pretty painful. 

We had a light day of physical therapy being it is a Sunday but that's fine be Jane was pretty tired.

 

Appetite still not back yet but believe it is because.of hospital food.

 

There is some oozing today form a point on her surgical scar...they are pretty sure it is just excess fluid and not an infection. Will keep an eye on it as it drains away on its own. 

 

Hoping for another good night's rest so energy for tomorrow

A tampon

We didn't get much sleep last night. Just after I had finished sending all you yesterday's update Jane nosebleed started again with a vengeance. They tried a few things and wasn't helping much. I was hoping the get her back to northwestern emergency and see what they could do which was one of the options they were talking about.  The last try was using a tampon laced with afrin nasal spray and sticking it way up her nose... it  worked.  Still took a couple of hours for Jane to stop coughing up blood and  clots from blood flowing down her throat during the bleed.   

As of this morning it is under control.  And Jane is feeling better. Was able to do her physical therapy. They are going to keep her off of blood thinners until we are sure the nosebleed has stopped. The tampon is still up her nose will try and remove it tomorrow. Looks pretty uncomfortable but not bleeding anymore. 

Another day closer to going home

Another day closer to going home.  We had good day of physical therapy although Jane did get a nose bleed in the morning which was difficult to stop. Nosebleed was caused by the dry state of her nose (supplementary oxygen is very dry). And because of her blood thinners was hard to stop. Finally did after using a decongestant. But starting bleeding again tonight which was stopped in about an hour.  They will hold her blood thinners for a day or so to give it a chance to heal.

 

Appetite a little better but the gluten free food here doesn't have a lot of choices. But the ensure drinks are still working out well. :)

 

A lot of you have been wishing us congratulations for getting home pretty soon thank you very much for that! We will be home in week and it is a major milestone. However the hardships of recovery are far from being over.  We will have home health nurse visit to give medicine and change bandages from surgery.  We will have hospital visits at least once  week. As time goes on things will slowly get back to normal.

Still no tube feeds

Got another strong day of physical therapy under our belt today. They started Jane practicing things she would be doing when home. Like taking things out of refrigerator, stepping up and down off of curbs with walker, getting in and out of shower etc. The exercises have been very helpful. Jane is not using oxygen at rest just when gets moving and winded.  Still working on getting her appetite back but at least she has the ensure drinks. Still no tube feeds. Coming right along as expected. Endurance is slowly increasing each day. 

 

Friends have been telling me that even though we may not be here for the actual air show. We should see them practicing before we go :)

No time to eat

Today they kept Jane so busy with physical therapy and doctor visits she barely had time enough to eat. But then again her appetite is very small. Supplementary ensure drinks are working well she has enough calories to forgo the nightly tube  feedings.  Also today Jane is feeling comfortable enough to not use oxygen all the time. Now only when she feels out of breath.

Thanks for everyone's prayers!

El No Trach-o

Today they removed Jane's trach (Tracheostomy)  She has had it since the first week of the transplant and was used to connect her up to the ventilator. Remember those ventilator days? Now she has been off the ventilator for almost 3 weeks and won't going back so there is no need for her have the connection in her neck. All that remains now is 6mm hole which is bandaged and will heal over in a few days. 

 

Also today Jane walked 30 feet more in 6 minutes than last time. So slowly but surely getting stronger as we prepare for our discharge. In about 10 days. We are still working on her appetite so tube feeds can be totally stopped.  Dietitian started her on Ensure drinks to help her oral calorie intake.

Friday August 14th

Our official discharge date is set for Friday August 14th. Both Jane and I are glad we get an extra week of therapy and prep before we going home.  And just as much we are looking forward to be home again. 

 

We had another strong day of physical therapy today. Having a clear discharge date goal has given us more focus and plan on how to get most out of the remaining therapy. 

 

The only bad part of this date I just miss the Chicago air show  which is on 8/15. Could have watched from our window!

full two weeks

As of today we have been at RIC for a full two weeks. It has been a great place for physical therapy. They say it is the best in the country but for that I thought it would impress me more. But regardless we are very thankful for being here.  

 

I had mentioned earlier that they set an initial discharge date of 8/715. We are pretty sure that date will pushed out at least a week or more. Which is good.  We are relived . Both of us need a lot more rehab before we get sent home. 

 

And today was a good day. Got good physical therapy and did extra on our own. Jane walked the longest and fastest she had ever with me.  Still very far from where she was before transplant but slowly getting there. Her appetite is better but enough to sustain the work she is doing so she gets tube feeds at night to compensate...which by the way is one of the things we want to be free from before we go home. Thanks for all your friendship and prayers!

that pesky edema

Another quiet good today. We did not get scheduled for any physical therapy today which were disappointed in...but today is our scheduled day of rest.  We did therapy on our own to make up. We also had a visit from friends at church which made the afternoon very enjoyable. 

 

That being said if you ever want to come visit us please do we love the company. Only restrictions are no kids and don't come sick. And then stay around to enjoy for yourselves the lake, excellent restaurants and or shopping literally blocks away.  Parking is cheap.

 

All medical things with Jane are stable. Just that pesky edema (swelling) of her lower body.  And continued efforts to strengthen up.

staffing issue

Quiet good day today. Physical therapy was light today for some reason. Perhaps a staffing issue. To make up Jane and I did some extra afternoon walking in halls. Just a few minutes enough to tire her out. She said she felt a little stronger today.  Thanks for everyone's prayers.

aspiration will cause pneumonia

Well the blood did help. Last night when told you she was out cold...well I thought...she woke up about 9:30 pm after the blood was given and just wanted to walk around the room which she did.

 

Today she feels better not so worn out, hemoglobin is at 8.4 She say she can see and think better. She was able to walk 139 feet with the walker without taking a rest.  Prior only about 90ft.  Being back on lasix she is seeking less swelling in her legs which she is happy about.

 

They are stepping up physical therapy on her speech and swallow. Since the swallow tests showed  slight aspiration on swallowing liquids. So they do all sorts of swallow exercises with her.  It is important for new lung transplant patients not to have aspiration as it will cause pneumonia. 

a dose of Dilaudid

The PICC line is in a Jane is getting her unit of blood as I write this. They have been wanting to do this since last Friday. 

 

While in radiology before they started the line Jane was feeling very anxious and asked for something to relax her. She was given a dose of Dilaudid and she has been totally out since getting back in the room.  

 

She has had Dilaudid couple of times before at Northwestern with the same effect so out you can barely wake her.  She should be awake and over it in the morning.  And hopefully a little peppier. 

So no physical therapy or chatting this afternoon with her.  Tomorrow is another day. Thanks again for your prayers!

A little bit aspiration

Jane's swallow test under the x-ray shows a little bit aspiration (going down the wrong way) when drinking. This means she will have to take care when drinking and remember to only swallow liquids with her chin tucked down. This helps her throat muscles swallow more properly.  Soon her swallow muscles will become stronger and she can swallow normally.

 

She seemed stronger in physical therapy today and we were able to talk and hang out. Other days after physical therapy could hardly keep her eyes open.

 

Tomorrow we get sent back to northwestern (out patient) to get that picc line inserted and hopefully get a unit of blood after that.  We should see a good bump in her energy level then :)

trach has been capped

Today was similar to yesterday more physical therapy. Jane had a little more energy so was able to do more a little more. Hemoglobin levels are low at 7.1 but stable. They plan on sending back to northwestern on Wednesday as out patient to have PICC line inserted so she can get a unit of blood.  

 

Tomorrow they will perform a formal swallow test where they watch her swallow while being x-rayed to make sure everything is going down the right pipes. The consensus is that her swallow is just fine. However since she has had a lung transplant they want to be as sure as they can be. :)

 

Speaking of swallow, her trach has been capped and not used now for about a week. Which means in next couple days the will remove her trach entirely. The hole in neck will close up on it's own. 

 

Jane has not been happy about the swelling in her legs it make much harder to walk. They will start her again on lasix in the next day or so which should help a lot. 

Showing some improvment

Not much to report today pleasantly simple.  Physical therapy went well..They did assessments that showed she has improved over the last week. Which we know. 

Tomorrow is Monday and starts another week. Looking forward to progress.  Thanks for everyone's prayers!

day of rest

Jane had her day of rest today... no physical therapy.

We just hung out in the room watched the boats come in and out of harbor (picture attached), watched a little bit of Beverly Hillbillies. We did do some of the exercises on our own and she walked around room with walker periodically.  Jane had a little more energy. Her hemoglobin is still low but stable at 7.3. No falls today :)

Tomorrow it's back in the saddle again with a full day (4 hours) of therapy starting at  8am. 

They have estimated a  tentative discharge date of 8/7/15 assuming she meets her goals. Jane believes this  is way too optimistic but we will see!

Had a fall today

Today physical therapy was the same as yesterday  and she did a little more. Her energy level is still low swelling still the same. 

 

She has not gotten her blood yet because they have not gotten her PICC line in yet. We had requested that her PICC line only be inserted at Interventional Radiology. Which will be done at Northwestern on Monday...that's the earliest we can get in. Her hemoglobin levels although low are stable. 

 

Jane had a fall today while walking...turning tripped over her feet. She is OK she fell right on her butt only. And this time the swelling came in handy...gave extra padding. Other than a burse nothing else is broken.

 

The chest X-ray they took yesterday...I forgot to ask but I assume is OK otherwise they would have said something.  

 

Tomorrow is her day of rest no physical therapy.  Each patient here gets one either sat or sun.

 

Thank you all for your prayers and fellowship

tuckered out

Today was a slower day. Physical therapy was just as intense but Jane was just tuckered out. She did as much as yesterday she said she felt she was dragging. She did not get a good night's sleep. There is more swelling in her feet and legs today so they were heavier. We will have to make a point of keep her legs elevated when she is at rest. 

 

Her hemoglobin levels are low today 7.1. The bleeding she has had prior days from her GTube is finally catching up with her. They have decided to give her another unit of blood to bump up her hemoglobin. However they were unsuccessful in starting and IV. Jane's arms have been pricked too many times. Hard to find a big good vein for the blood. So they re-evaluate doing blood tomorrow and may do a PICC line if needed.

They did a chest x-ray today because they haven't done on in a while. Making sure her lungs are remaining clean.  Will know results tomorrow. 

 

She is in good spirits just tiered. Having another unit of blood and a good night's sleep should amp her up with more energy.  Thank you for your prayers!

The Starbucks Hack

Short but sweet update today Nowadays we are having 3 step days. Today she walked 90 feet. (Little steps at a time using a walker). GJ Tube still does not bleed. Blood clots she had developed after surgery, most are gone remaining couple in her legs are dissolving...Which means they can reduce her blood thinners. 

 

Oxygen levels are excellent as usual. She on a little bit of supplementary oxygen. 

Today I realized if I walk around with a Starbucks coffee in hand I get hassled less by security about where is my visitors pass. I tested this theory by walking back into northwestern hospital and around a couple of floors. Every time a.gaurd looked my way I smiled and held up my coffee they just smiled back. I guess one looks less threatening with Starbucks coffee in hand.  One can blend in almost anywhere holding a Starbucks coffee. So there you have it I call it the Starbucks hack.

medium bob

Looks like the bleeding from her GJ Tube seems to be under control.  Transplant team came back today with a surgeon who removed a couple more sutures and reset it a bit. 

In physical therapy today she walked outside in the hallway almost 50 with walker.  And stood on her own looking out at lake for more than 15 minutes. She ate more today but still only tiny portions. They have stopped her tube feeds so she should be getting more of an appetite soon.  

Jane got her first barbershop hair cut in her room when a RIC barber came around. She was dying to get a hair cut so settled for barber. Choices were short bob medium bob long bob. She went with the medium. 

Bleeding Finally Stopped

The transplant team came to visit Jane at RIC today. They checked her out...lungs doing well.  To help stop her GJ Tube from bleeding they  brought Surgicel, a blood clotting gauze. Seems to be working they will also suspend blood thinners for a day. They seem to think this should do the trick. 

The physical therapists here are great. They have kept Jane pretty busy today. 

We got moved again this time to a real private room which means I loose my  nice hospital bed. But they got me fold out bed :)

Looking forward to what gets accomplished this week at RIC.

First full day at RIC

First full day at RIC. They spent 3 hours evaluating Jane. Early this week they will have  a personal plan for rehabilitation and an estimate  of how long it should take. During the evaluation they tested her swallow and it's fine. They have cleared her for eating and drinking. However Jane's appetite is not there. They will keep her on tube feeds until she gets back on track with her appetite again. 

Her GJ Tube is still bleeding. They have to change soaked bandages every few hours.  Hemoglobin levels are still stable but I am not sure for how long if this keeps up. She is on blood thinners so hard to clot. Tomorrow is Monday so there will be more doctors on it. They may send her back to northwestern out patient so surgeons there can do something about it. They will have to get bleeding under control before she can do much physical therapy.

Rehabilitation Institute of Chicago

We arrived by ambulance to the rehabilitation institute of Chicago. It is an excellent place for rehab. This is where  Christopher Reeves came after his accident.  Not quite as nice as northwestern when come to medical care. But then again we are here for the rehab. We got private occupancy in double room which means I get my own hospital bed to sleep in. Much better than partial recliner chair I have had.  And even nicer lake view to boot. 

Our first day is slow checking us in and getting us into the system.  Tomorrow the rehab begins. She will get 3 hours a day.

Jane is doing great. Breathing and talking. However her G Tube is still bleeding. If they are unsuccessful in stopping the bleeding not sure how much rehab they can do. They said we may get sent back northwestern for them to fix. We will see. 

logistical reasons

We have not been discharged to the rehabilitation institute yet for logistical reasons. They say it will happen tomorrow but being tomorrow is a Saturday...well experience has shown me the not too much happens over the weekend. So it may not be till Monday.

But that's OK we are not in that much hurry.  We did find out that we will get a private room at the rehab which what we were hoping for.:)

 

Jane's breathing is continues to do great and she is looking better each day. Thank you for your prayers and fellowship.

It's life in fast lane

It's life in fast lane today...in a good way.

 1. They rolled the ventilator out of the room  

  2. They loosened her trach cuff so she can talk now. Yes Jane and I we had our first verbal conversion since 6/3

 3.  She started to drink water and was able to swallow a pill. 

 4. Was able to walk around her room with assistance and a walker.

 5. Jane is doing so well...we are skipping going to a regular room. They want to discharge us to a rehabilitation center tomorrow. 

The rehab center is just access the street. Called  Rehabilitation institute of Chicago

That's fast huh

36 hours off the ventilator!

36 hours off the ventilator now and going strong. Was able have a great day of physical therapy today as well even while off the ventilator.  Currently she is on just supplementary oxygen which was even turned a little today. 

 

All medical staff that came to see her were excited about her great progress.  

 

So the plan is to keep her off the ventilator as long they can. The consensus is that doesn't need the ventilator any more...time will tell for sure. In next day or so if she keeps this up they will make changes in her tracheotomy which will allow her start talking and eating.  And then eventually the trach will be removed :).

 

She does have more bleeding today around her G tube. They say that's normal because of her blood thinners and redressed. 

 

Still enjoying the nicer view and room thank you for your prayers.

12 hours off the ventilator...a breeze

12 hours off  the ventilator seems a breeze for Jane. She has done it 4 days in a row so easily the are going to keep her off until she needs it. They are hoping she can go 24 hours. Tonight they will leave her off the ventilator when she is sleeping while keeping a close watch. We will see how it goes. 

Jane was a little tired and nauseous today to do much physical therapy. She threw up for the first time today. That was several hours ago and she is still breathing well so we are pretty safe that she did not get anything down her new still fragile lungs (aspiration). Also they feel by now Jane has strong enough reflexes to pervert that going down the wrong way. They are getting her different anti nausea meds hoping they will work better. 

I asked we could be moved to a corner room when on came available. And wow one of two corner came available just a few hours after I asked. We are very thankful to be there right now! Got the same size as last corner room...no lake view but a view still not too shabby. Picture attached :) And I say unto you, Ask, and it shall be given

We are movin on up

Moving on up today. We were transferred out surgical ICU and into medical ICU one floor up. This is good because it means her surgical issues have stabilized. We weren't so happy because our room is much smaller and our view of lake is replaced by a view of weeds growing on a roof. Picture of view is attached so you will know what I mean.  Now what is left to do is get off the ventilator and reconditioned back to walking the getting around like she used to.
 

Everything else is the same and doing good. Breathing continues to improve as well as her strength.  We just need to get used to our newer smaller not so nice quarters!

number one patient

Today not much physical therapy but she got some of her own in by getting to the toilet a couple times  :). 

Like other Sundays was quiet and relaxing. Jane did develop  bleeding at her J tube site and had to get a unit of blood. But in the big picture with all that she been through this did not seem like such a big deal...quite the perspective. The bleeding is under control now.  Speaking of perspectives this reminds me of a conversation from a  couple  days ago.  

A new transplant surgeon who  northwestern just hired talked to us .  He was interested and happy at the progress Jane is making. He said something encouraging, he told Jane that she is their number one patient. She is the subject they talk about most in their day. I got from another source that this new lung team at Northwestern hospital are considered the top lung transplant doctors in the country. 

 

So how great is that she has the top people in the country constantly talking about her care.  Also helps that she is currently the only lung transplant patient in the hospital. :) )But regardless amazing what God and your prayers are doing in the background for Jane. Helps strengthening of our faith. Also tells us to let go cause God has it already handled. 

 

Looking forward to the progress we will make next week!

'stellar' day of physical therapy

As one the hip younger nurses said we had 'stellar' day of physical therapy today listening to Back Street Boys and James Brown. Walked several feet made it to the sink where she was able to wash her hands. Her most proud of feat is that she can get to the toilet :). And this while off the ventilator to boot.   She said that is making her feel normal again.

Transplant surgeon believes stopping that anti-body rejection was what turned it all around. 

Blood clot in lung???

12 hours off ventilator today and walked with walker 6 feet. So she continues improve physically.  This is really boosting her self confidence and reducing her fears. They dropped off bicycle peddler machine she can use while sitting in the chair to use through out the day. 

 

The breathing plan for tonight and weekend is to be off ventilator during the day sleep during the night on ventilator to rebuild her breathing muscles. 

We did have scare today when one of pulmonary doctors who we have not met yet came into our room to discuss options with us about a blood clot they found in her lungs. Jane's heart sank...I was thinking this is strange...in about a minute the doctor realized he was in the wrong room talking about someone else!  Ok we can laugh about this now :)

Do the Macarena

Did 8 hours off the ventilator today and did it strong. More steps taken in walker today in physical therapy. I played the Macarena and Jane was able to do the Macarena with her upper body along with the physical therapists.

They did a CT scan today to find out that her lungs are responding well to the anti-rejection medicine she had to take last week and the rejection seems to be under control.  We thought this to be the case as Jane's breathing has improved but this gives more solid evidence.
 

 

Jane has also been able distract herself this week by watching some tv. We were watching season 3 DVD of Beverly Hillbillies and getting some laughs. So we are getting some normalcy back into our lives. Nothing but good news today. Thank you for your continued support and prayers.

gift of life

Today was busy day. Great day of physical therapy Jane took her first steps with help and a walker and was able to get from the chair back to bed with a walker and help. Inspirational music today was That's the way I like it (KC And sunshine band) and in the Navy (Village people).  Didn't have a chance to go without ventilator today but I am sure we will tomorrow.

This afternoon Jane had to have another annoying procedure...they moved her feeding tube from her nose to  a connection on her side that goes directly to her stomach  called a GJ Tube. This will help her nausea and is safer for her to have in the long run. This took up her whole afternoon.

The picture for today is one I took last night outside the hospital. If you look closely on sign on the back window of the truck it says organ transplant team. So last night someone else is getting the gift of life like Jane and I got 35 days ago. PTL