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!