grimmie

Bursting At The Seams With Joy!

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Thank you to everyone for your prayers and good thoughts.

He is doing amazing! He's off all oxygen support now. He's beginning to trust the new lungs to provide his body's O2 needs. From what Alley tells me that is normal response, the brain doesn't recognise the new lungs, it becomes a matter of trust and practice.

His Surgeons told him yesterday they had never had a transplant go as smoothly as his or be as perfect a match between donor and recipient.

That news blew my mind considering right before they wheeled him to surgery, I was required to read and sign papers (3 pages) listing all the complications that can and do occur as a result of the surgery.

The Dr. Also told us at 3 months post transplant, he would begin to feel good again and at 6 mo. he would feel normal. Not sure I remember normal.

After 10 years of struggling and altering our lifestyle, "normal" will feel pretty darn good!

I look forward to doing things he and I took for granted before he got sick...movies, flea markets, grocery shopping together, family vacations, and get togethers. I definitely will not miss loading his oxygen concentrator, O2 tanks and cart in and out of the car, locating wheel chairs for transport and avoiding buildings with stairs or inclines which were unaccesable to him.

He should be done with rehab and home in 3-4 weeks, I miss him like crazy and I am very anxious to find a new routine, even if it means I now have to clean on a regular basis.

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Clean the house regularly, wipe down door handles, light switches, faucets etc. be extra vigilant with food prep.

My house stays neat because it's just the two of us, but I definitely don't keep it dust free.

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ah I see. want to come to my house too haha? seriously, this is very exciting for both of you and the start of something new and wonderful.

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How wonderful!!!! Love his pink cheeks.

A very dear friend of mine go the call last night around 1am that a heart was going to be available for him and to get his behind to the hospital asap. I know that feeling, that OMG poo just got real and time to get a move on. We just received word that the surgery went well and his new heart is working perfectly. Extra prayers for you and your family.

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That's so awesome! Best wishes to you and your husband in the days to come, for continued improvement and many more happy, healthy years! I will keep you in prayer. Im also happy to hear that Alleyway is doing so well. I think about her often and was glad to hear you got in touch with her.

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HorseLes, that is wonderful news for your friend. I hope his recovery is as amazing as my husband's has been.

He continues to do well, he was transferred to rehab Thursday afternoon. Tomorrow will be his first full day of PT, OT and Respiratory Therapy. I am so anxious to get him home, take a break before we have to start the weekly trips back to the clinic for tests.

2pacers, thank you for the good thoughts.

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Little update. Therapy has been going good. He has worked his way up to walking with a walker around the entire unit, 570 ft. The 3 different therapies tire him out at the end of the day.

A sonogram showed a pocket of fluid outside the lower portion of the left lung. Lasix failed to get rid of it, so the Dr. attempted to drain it yesterday. He found it was dried and coagulated blood that flushing with sterile saline did not remove. He had a CT scan immediately and will have another with iodine this morning. They may do a Broncoscopy later today. The Dr. said it has to be removed as it can cause scarring of the lung which prevents the lung from fully filling.

One thing we do not want it scarring!

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Thanks PD and WR.

Just got home from spending the last 3 days with him. He's still got a long road of rehab ahead of him. He's still so weak from steroid use, that he has to have help to stand and transfer. His muscles are so atrophied, I can just about close my index finger and thumb around his ankle.

My son and I got him up to walk on the unit last night and we ran into one of his Drs. who validated what we have been telling him...he has to get off the oxygen. They aren't going to discharge him needing it.

Kudos to him, he woke up today and took the oxygen off and managed without it. I understand 8 yrs. of needing it to function, but he'll damage his new lungs if he doesn't start using them.

We are hoping for a Feb. 22 release date, I really want him home for my birthday the 27 th.

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We're going home today! Happy Dance!!!

We had our pharmacy class yesterday, he'll be taking 15 drugs. We took turns filling his medication box so the Pharmacist could check for accuracy. We were 100% correct.

I learned how to check his blood sugar and give insulin. Hoping his need for it will diminish once his rejection drugs are reduced.

One of the Clinic coordinators instructed us on the rules when we go home. It's somewhat daunting really.

I'm sure getting in a routine will ease some of the trepidation I have about my ability to control him contracting germs, bacteria, viruses, fungus etc.

This bit of news shook us, average viability of transplanted lungs is 5 yrs. She explained why...no other organ comes in contact with environmental toxins like the lungs.

I'm going to keep a positive mindset about our ability to do this.

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Yay! So glad he is coming home. You will do a great job helping him get settled and into a healthy routine, Remember what they said - at 3 months feeling good, 6 months feeling normal - that will be wonderful!

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Magic, Yep I truly believe that, he is so much stronger today than he was a week ago.

Thank you everyone. Dr. just left and we are sprung, just waiting for the nurse to remove his IV and load the cart with his things.

I'm so giddy I can't stand myself!

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I havent posted much lately, but have been lurking and wanted to say congratulations and wishing the best!!! Hope he gets settled home well!!

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After the first week at home, we're in a routine. I was confident he could take his meds and prepare his insulin pen injections, so I turned it over to him. It's helped free up my morning to feed critters and make him a healthy breakfast.

It's so nice to get my first cup of coffee 30 minutes after I get up and not an hour and a half. I am not good for anything before I sit and have my coffee.

He has 2 therapy sessions under his belt and seems to be walking stronger. He goes to Breathing Centers for RT and PT MWF and the Transplant Clinic every Tues. for the next 6 months.

I am cherishing my Thursday off, I'm driving over 300 miles in city traffic a week. How...better yet...why do people do that?!! Ugh, so glad I live rural.

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QH_LUV_R,

It is great that your husband is healing well at home, most people heal best when at home with family, so I wish your husband continued great healing. But no doubt, your love for him plays a big role in the progress he has made. I don't envy you driving in any city traffic, I've driven in Dallas-Fort Worth area a number of times, & as I age don't look forward to it, when I head that way to visit our daughter & grandkids in the area surrounding Fort Hood. Best Wishes. PD

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Thanks PD.

I have always said Dallas/Ft. Worth traffic is worse than Houston...until now. Houston Rodeo time here and the Reliant center is near the medical center where Paul is now. Omg traffic is HORRID!

Paul had a routine Bronchoscopy to take biopsies last Thursday. Got a call yesterday to rush him to the hospital that there were signs of rejection.

At this point they are calling it slight with some kind of infection. The scope also showed because of a weak diaphragm, he hasn't been coughing properly to expell mucous as he should and the lower left lung had a lot of gunk.

Dr. Wanted to do a procedure to flush that old pooled stuff from surgery and raise the diaphragm in place and stitch it there to be more effective. Now that is all on hold.

He is in good spirits because he is stronger, mobile and able to perform self care. He has vowed to be out of bed except to sleep and has staff ok to use a wheel chair to walk the unit for exercise and sit and rest when he needs it.

We are confident this can be fixed and the clinic has always assured us they are very very good at treating rejection.

Edited by QH_LUV_R

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I don't see this as a setback at all, rather affirmation that your husband is in competent and confident hands. much, much better to err on the side of caution. from what I've read this kind of occurrence can be almost characterized as "common". keep your chins up both of you!!

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So much has happened since my last update. Paul developed pneumonia in both lungs and an infection due to the diaphragm crowding his left lung. We went to his regular clinic last Tues. morning and they admitted him.

A bronc was done Wednesday morning and biopsies showed level 2 rejection Considered mild on the scale. Wednesday and Thursday nights were pretty bad for his ability to breathe and being weakened, they put him on Cpap. By Friday morning he was needing intubation.

I was able to see him before they sedated him, he was in dire strates and very ready to go to sleep and have the ventilator take over for him.

I am so happy to say, he is so much improved today that he will probably be off the vent sometime on Monday and hopefully they can do the corrective surgery on the diaphragm early in the week.

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QH_LUV_R, :huggy:

Glad that Paul is hanging in there, in spite of some minor set backs, I wish Paul the best going forward, & for you to be the best cheer-leader on Paul's team, Better than the Dallas Cowboys cheer-leaders. :angel3::angel3: Best Wishes & God Bless. PD

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This makes me so happy! Congrats and I will keep him in my prayers for continued recovery :) Thanks for the alleyway update too, I've thought of her often over the years. I'm so glad she's well.

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