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TransplantBuddies.org Forums » Heart - Lung(s) » Archive through April 17, 2011 » concerns for my hubby 2 months out lung transplant « Previous Next »
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Tracy
Member
Username: Tracyjomccarthy

Post Number: 5
Registered: 01-2011
Posted on Wednesday, February 09, 2011 - 03:20 pm:   Edit Post Delete Post Print Post

We are now 8 weeks out and have had some setbacks.
1. My husband is just not "mentally" with it. He cannot fully comprehend simple questions or follow semi simple commands. Ex -he couldn't figure out how to operate a fax machine.
2. He tells me stories that he thinks are real but don't make sense.
3. He is very lethargic . His eyeballs look like they are going to pop out of his eyes. He can't keep his head/neck up straight. He is forgetful. He shows very little emotion. He falls asleep in the middle of a sentence.

This is so opposite of his personality. He is also having more than usually anxiety. he is already on a anti depressant and anti anxiety.

He still complains about back pain and is on pain meds.

2 weeks ago he was feeling great and ready to go back to work We have had small colds in the house treated by antibiotics. Last week he was overly anxious and feeling weird so he went to local ER. He was very low on blood so he has had 4 transfusions since then. He was transferred to his TX center and they took him off Immuran, lowered his Valcyte and Bactrim. He took blood Monday and was told blood count is coming back up nicely. He does not seem any better. They said he may be dehydrated???

Have any of these symptoms happened to you? What was the cause and how do we fix it?

i am very concerned.

Tracy
husband dbl lung tx
U of Chicago
12/8/10
Jack R
Forum Leader
Username: Jack_r

Post Number: 320
Registered: 08-2010
Posted on Wednesday, February 09, 2011 - 05:06 pm:   Edit Post Delete Post Print Post

Tracy,
Being a Heart Transplant I didn't experience the pain that Lung transplants have for a period of time post-transplant.
I'm sure the lung transplant members will start responding shortly.
In the interim have you checked the potential side effects listed for his medications and what is the transplant support team telling you in response to your questions?
If by chance he was on the pain killer morphine (many years ago I was for something unrelated to my transplant) please be aware that is nick-named the "dream drug" and I still can talk about several, what appeared to be real experiences, dreams 17 years later. I know they weren't real for they were so outlandish but my wife still had to convince me for almost 1 year after I had the morphine..
You and your husband are in our thoughts and prayers.
Cardiac history going back to 1993. Heart Transplant received in Oct. 2004. Interesting first year and have been very physically active ever since. I currently am pro-active with the SE PA. Gift of Life and a member of Johns Hopkins patient administered Heart Transplant Foundation.

Exercise - look around you and don't tell me you can't -Blog
Keith
Member
Username: Kbloomer

Post Number: 121
Registered: 12-2009
Posted on Wednesday, February 09, 2011 - 06:10 pm:   Edit Post Delete Post Print Post

Tracy,

I had my double lung transplant 11/12/08. I spend 6 weeks in the hospital. I had lots of hallucinations and memories that were not true. It probably took me 6 months to learn of all the things that did and didn't happen. I probably couldn't take care of myself for the first month home. That would put me at about 10 weeks until I was able to take care of myself.

You don't mention if he is on any pain medication.

I spent almost 6 months on percocet. I had some circulation issues and lost some fingertips and toes. I had to wait to get them removed and it took about 6 months to get it all done and recover. Much of that time was spent falling asleep at inappropriate times, being mean to my wife and 7 year old daughter, and sitting on the couch. None of which were normal for me. I did participate in at home physical therapy, and then occupational therapy, and finally speech/swallow therapy.

I thought physical therapy was very helpful to help me get off my butt and moving again. It also helped me build strength so I could take care of myself. Getting off the pain medicine was helpful in getting me able to take care of myself. I was lucky that I didn't have any issues getting off the meds.

While in the hospital the doctors found my blood levels were low, Turned out I had stomach ulcers. I know others with this issue post transplant. I think they may have been able to see blood in my stool to diagnose it,

Everyones journey is different but hopefully you will find someone that has gone through something that is similar to your experience. Good Luck.
Bilateral Lung Transplant 11-12-08
Brigham and Womens Hospital, Boston, MA

Scleroderma, Pulmonary Fibrosis, Pulmonary Hypertension
www.caringbridge.org/visit/keithbloomer

Volunteer: RI Organ Donor Awareness Coalition, New England Organ Bank, RI Blood Center
Mick
Member
Username: Manguel

Post Number: 187
Registered: 11-2007
Posted on Wednesday, February 09, 2011 - 08:20 pm:   Edit Post Delete Post Print Post

Is he on Endone ?
Double Lung Transplant
Karen R.
Forum Leader
Username: Relivkaren

Post Number: 5238
Registered: 07-2007
Posted on Friday, February 11, 2011 - 10:35 pm:   Edit Post Delete Post Print Post

Tracy:

I am sorry that your husband is struggling right now. It sounds medication related to me, but I never dealt with anything like he is going through. I did have problems with low WBC, but they took me off Cellcept and put me on Neupogen and that did the trick.

My suggestion would be to keep in contact with the transplant center until things get worked out.

I hope he feels better soon!

God Bless!
Karen
Dx: BOOP - May 2006. Rediagnosed with Bronchiolitis Obliterans Nov. 2006
Double lung transplant on Dec. 1st, 2009
Cleveland Clinic

Ohio, USA

Be kinder than necessary because everyone you meet is fighting some kind of battle.
cindy
Member
Username: Cindy

Post Number: 323
Registered: 09-2008
Posted on Saturday, February 12, 2011 - 02:02 am:   Edit Post Delete Post Print Post

Hi Tracy....

Definitely stay in contact with your tx team and update them. I had a double lung transplant a year ago and like Karen, never experienced this. Except back pain is common because of the surgery. It wil go away for some in time. I'm sorry your husband is going through this. I do hope you find the answers soon. My best to you both.
Cindy

Double Lung Transplant on Feb 9, 2010

at UCSD/Thornton Hospital, San Diego, Ca.

Albuquerque, New Mexico..USA

www.caringbridge.org/visit/cindywalters
Tracy
Member
Username: Tracyjomccarthy

Post Number: 6
Registered: 01-2011
Posted on Saturday, February 12, 2011 - 10:15 am:   Edit Post Delete Post Print Post

I found out at his last appointment with pain control they had upped his Lyrica and his Oxycodone and percocet because he was still complaining of pain.

He didn't tell them that he was taking more than the prescribed amount of medication before they did this so on top of the new dose he was taking the old dose. Even this he said did not take away the pain.

I think he needs to understand he will still feel some discomfort from the surgery for some time. He needs help with the pain pills. He went off the cliff and needs help with controling the anxiety, pain and narcotic use.

Anyone have these issues. I am mad and don't trust him and don't know if I want to watch this anymore. He had a similar situation before the transplant with his " Hydromet cough medicine"became a real problem.

I have never dealt with addiction or recovery so I don't know what to do next.

I hope I didn't say too much.
husband dbl lung tx
U of Chicago
12/8/10
Joanne Schum
Member
Username: Joannes

Post Number: 233
Registered: 08-2009
Posted on Saturday, February 12, 2011 - 10:57 am:   Edit Post Delete Post Print Post

Tracy,

Not sure if your hubby is addicted yet, but sounds as if he has a great potential to get addicted, due to his past history.

His team needs to stress, that there is pain, or discomfort for a long time - maybe 6 months or up to a year... .but we get use to it, overlook it, go on living, but not on pain meds. Also, our brains are very strong and creative and we can convince our bodies we are in pain. Like the man who went into a train compartment, wanting to kill himself. He chose the freezer compartment, and climbed in and closed the door. It was discovered and he was dead, and had all the signs of dying from "sub - zero temperatures, frozen" but... the freezer was NOT ON.... .it was the same temperature as outside.... so his mind worked so hard to set him up that he froze. Sad story, but shows how strong our minds can be.

Yes, you do not have to be an expert on addiction and recovery, that is for the professionals to deal with. They should be clued into his history and your personal ideas... however, in the mean time, you can go to AA meetings. Alcoholics Anonymous - attend as someone who has a alcoholic or an addicted spouse, and they will help you what you need to do as that role. They help the addict and they help those close to them.

Sounds like ;you have a tough road, most times centers become aware of these issues with potential recipients, and get them help pre transplant. I guess it was not caught pre tx, and now your husband has to deal with it.

Good luck
Joanne Schum
Bi-Lateral Lung Transplant
September 12, 1997
University of North Carolina Hospitals-Chapel Hill
Author of Taking Flight-Heart & Lung Tx Stories
Jack R
Forum Leader
Username: Jack_r

Post Number: 323
Registered: 08-2010
Posted on Saturday, February 12, 2011 - 11:13 am:   Edit Post Delete Post Print Post

Tracy,
Well the good news is you now know part of the problem. I strongly urge you to contact the Transplant Support Team and go with him to the next appointment and let him know why the both of you are going. He may not react well and that is ok for this just isn't about him but you, the support team, and the donor family.
It is ok to be upset. I would not suggest you go to AA family support as there are a lot of issues going on in those group dynamics that may side track you rather I suggest, if you feel the need, to ask the Support Team for a reference.
A good friend of mine, retired Pa. Dept. of Addictive Service Chief, one time stated that unless the route of the problem can be gotten at, with professional assistance, and dealt with then it most likely will reoccur in another form.
Best of luck.
Cardiac history going back to 1993. Heart Transplant received in Oct. 2004. Interesting first year and have been very physically active ever since. I currently am pro-active with the SE PA. Gift of Life and a member of Johns Hopkins patient administered Heart Transplant Foundation.

Exercise - look around you and don't tell me you can't -Blog
Sally
Member
Username: Sally

Post Number: 89
Registered: 07-2010
Posted on Saturday, February 12, 2011 - 11:26 am:   Edit Post Delete Post Print Post

Tracy,
My thoughts and prayers are with you. I pray that God will give you strength and courage to get through the challenges ahead. Just remember that you are not alone, as we are here to help you in any way we can.
Sally
IPF 2007
Listed for Double Lung 10/6/10
Mayo Clinic/ Jacksonville, FL
Jack
Forum Leader
Username: Johnhollenbach56

Post Number: 424
Registered: 12-2009
Posted on Saturday, February 12, 2011 - 01:16 pm:   Edit Post Delete Post Print Post

Good morning Tracy,

First off at 2 months out the body can still be in a bit of pain, you do not get too much more serious than a major organ replacement, however - he should really stick to the med levels that have been prescribed in order to facilitate healing, along with exercising to speed up the healing process. The problem with going to AA is that his problem is not alcohol, NA (Narcotics Anonymous) where more appropriate will probably not deal with the issues of transplant, so I'd steer clear at this point. The best course as I see would be to speak to the transplant team, see what they suggest, there are (usually) alternatives available that will allow him to feel less pain yet regain his previous personality.

Good luck and stay well . . .

Jack Hollenbach
jack_hollenbach@hotmail.com
Received double lung transplant August 2, 2007 for COPD at UCSD Thornton Hospital, San Diego, CA

Live each day to your fullest, for it is a gift to be treasured
Joanne Schum
Member
Username: Joannes

Post Number: 234
Registered: 08-2009
Posted on Saturday, February 12, 2011 - 02:07 pm:   Edit Post Delete Post Print Post

Jack and Tracy,

I am suggesting AA for Tracy. AA is great for helping spouses, family members etc learn how to deal with someone that has an Addiction. Many AA programs are now associated with ADDICTION programs. Addiction to alcohol, cigarettes, sex, drugs, food etc. They are not "actual" AA programs, but if you go on line to AA meetings and look in your area, they should list groups for Addiction issues. I have a friend that her father and her boyfriend have alcohol addictions, they will not go to AA, but she was referred to attend herself, the meetings that help the other loved ones.

Joanne
Joanne Schum
Bi-Lateral Lung Transplant
September 12, 1997
University of North Carolina Hospitals-Chapel Hill
Author of Taking Flight-Heart & Lung Tx Stories
Keith
Member
Username: Kbloomer

Post Number: 122
Registered: 12-2009
Posted on Saturday, February 12, 2011 - 07:39 pm:   Edit Post Delete Post Print Post

Maybe it would help to find a pain clinic. The transplant team may know the most about transplant but not about other issues.

A good pain clinic can probably offer many different ways to deal with the pain. They probably also deal with issues related to narcotic addiction and abuse.

Just another idea to throw out there.
Bilateral Lung Transplant 11-12-08
Brigham and Womens Hospital, Boston, MA

Scleroderma, Pulmonary Fibrosis, Pulmonary Hypertension
www.caringbridge.org/visit/keithbloomer

Volunteer: RI Organ Donor Awareness Coalition, New England Organ Bank, RI Blood Center
Tracy
Member
Username: Tracyjomccarthy

Post Number: 7
Registered: 01-2011
Posted on Thursday, March 03, 2011 - 02:13 am:   Edit Post Delete Post Print Post

Ok figured out narcotic problem. It was the upped dosage of Lyrica combined with the other narcotics. Now since that episode he has had a catheter placed to drain fluid from around his right lung, he now has colitis and has been in bed with nausea and diarrhea. He is still on 02 because he feels like he can't get enough air. His team said that these are all speed bumps and he is hitting quite a few of them but tat the first year is difficult. I am so stressed and without income now not sure what our future holds. With 2 kids under 3 and no family near by it has been very hard being a caregiver. Sometimes I feel he doesn't,t want to move forward and do the work to get stronger.
I need to know from you who have been through it. I know everyone is different but do we have something to look forward to? Will things get better ? What was your recovery like.

Keith it sounds like your first 6 months to year were difficult too. Is it better now?
He is going to see a specialist about the narcotics and anxiety and I made an appointment to talk with someone too. We have lost communication with so many friends. Not even one person has been to see him after the surgery except his brother. I can't leave the house for more than 30 minutes because he is always sick.
Never did I think it would be this difficult. We need to know there is a light at the end. Is there?
husband dbl lung tx
U of Chicago
12/8/10
Jack R
Forum Leader
Username: Jack_r

Post Number: 355
Registered: 08-2010
Posted on Thursday, March 03, 2011 - 08:00 am:   Edit Post Delete Post Print Post

Hello Tracy.
In looking back I have often stated the first year, not unexpectedly, is very difficult. Yes, it will get better for both you and your husband.. From reading the authors posts you will notice that we all made it through and even some are many years out. In my case I had lymph gland leak, two rejection episodes, a case of neutrapenia, and 6 years later have done 2 half marathons, dozens of 5K's among other physical activites.
During this early stage it is very stressful for the caregiver and if more so when your the mother of two toddlers. I salute your energy and effort and recognize, as per the time of your post, that this can be exhausting. In Feb. of this year I made a "post" titled "caring for caregivers" under "new to transplant buddies" I recommend you read it when you have a minute for I have stated that I had the easy part of this journey my wife had the difficult part.
Tracy, you have a lot on your plate and especially so for a young woman but you have developed strengths you didn't know you had.
Without family in the area is there a friend who can come over and spend a few hours "sitting" so you can get out and get some fresh air? I strongly recommend, if at all possible, that you need some "me time".
Regarding the financial burden I have two suggestions:
- contact your transplant center and ask for a "social worker" as most major hospitals have them and they are used to seeing families in these circumstances.
- Consider, via website, looking up your husbands rejection drugs and other expensive drug manufactures for a some of them have discount or financial assistance programs available.
Please keep us posted and remember this is why this web site was developed.
Cardiac history going back to 1993. Heart Transplant received in Oct. 2004. Interesting first year and have been very physically active ever since. I currently am pro-active with the SE PA. Gift of Life and a member of Johns Hopkins patient administered Heart Transplant Foundation.

Exercise - look around you and don't tell me you can't -Blog
Jack
Forum Leader
Username: Johnhollenbach56

Post Number: 435
Registered: 12-2009
Posted on Thursday, March 03, 2011 - 09:03 am:   Edit Post Delete Post Print Post

Good morning Tracy,

I would speak to the teams social worker, see what services/support is available there. It sounds as if you need a break as well here, perhaps they might have someone who could sit with him so you could get out and get a break. There are services and groups that can provide this.

As you seem to suspect by now, it should get a bit easier down the road, right now the routines still seem to be a bit new/strange, soon they will become second nature (of course about that time the doctors will probably change them on you . . .LOL). As for his wanting to remain on oxygen, remember it was a constant thing for how long before transplant? I remember being post transplant in the hospital, having the nurse ask if she could take away my cannula, after telling her 'no' she informed me it had been off for two days . . . we form attachments to out leashes at times.

As for friends, apart from immediate family the doc's probably want to limit his contact with 'people' (time frame will differ from patient to patient & doctor to doctor), true friends will understand this and return once given the 'all clear', new friends are out there waiting to be discovered.

Patient Assistance programs can provide some financial relief with the expensive immunosuppressive drugs. Make a list of his medications, their manufacturers and then hit the web - every manufacturer has a site and offers a program, additionally there are private groups such as 'The HealthWell Foundation' that provide assistance - again speak to your social worker & remember you are your best advocate!

Stay well
Jack Hollenbach
Received double lung transplant August 2 & 3, 2007 for COPD at UCSD Thornton Hospital, San Diego, CA

Live each day to your fullest, for it is a gift to be treasured
Keith
Member
Username: Kbloomer

Post Number: 127
Registered: 12-2009
Posted on Thursday, March 03, 2011 - 09:06 am:   Edit Post Delete Post Print Post

Tracy,

I had some difficult times but things got much better for me. My family and friends tell me that I am quite a fighter and survivor. I don't remember it that way, I actually don't remember much at all of those first 6 to 8 months.

We had one friend that we relied on to give my wife breaks. Others offered but we thought it would be easiest to just train one person. He even stayed with me for a week when my wife traveled for work. We relied on family for rides to doctors appointments.

It may be helpful to see if your insurance would cover a CNA or other professional for a visit or two a week. That could free you up for shopping and some time for yourself. Like Jack, I know that my wife had it much more difficult than I did.

Things have gotten much better for me. I still have some pain in my feet and occasionally around my incision. Most importantly I am alive and I can do much more than I could before my transplant.

I haven't returned to work but spend at least one day a week volunteering at the local blood bank or for the local Donate Life group. I can now play with my 8 year old and may even coach her soccer team this spring.

This weekend I completed the American Lung Association Climb for Air. This involved climbing the stairs to the 29th floor of a building in Providence. It took me just under 20 minutes, far from the winning time, but I made it.

Good Luck to you and your husband.
Bilateral Lung Transplant 11-12-08
Brigham and Womens Hospital, Boston, MA

Scleroderma, Pulmonary Fibrosis, Pulmonary Hypertension
www.caringbridge.org/visit/keithbloomer

Volunteer: RI Organ Donor Awareness Coalition, New England Organ Bank, RI Blood Center

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