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Caregiver for husband with end stage pulmonary fibrosis


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13 replies to this topic

#1 Debbie S

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Posted 20 July 2008 - 07:03 AM

Hello All

I am posting for the first time, after reading sclero forms for 2 years. I am at the point that, I need some feed back on end stage pulmonary fibrosis.

My husband was diagnosed with CREST Sclero over five years ago. The first sign was Raynaud's.

Then it next hit his lungs. He is now on the lung transplant list. He is using 15 liters of oxygen at home. At this stage the Dr's at UCSF CA. have advised that he be admitted to hospital to wait for a donor. I am afraid that he will have to wait with a slim chance that it will happen. He is O positive. Which means that most people that need donors ar the same. With that said you understant that his chances are slim, due to lack of donors in our area and alot of people waiting on the same list.

My question is what do they do at the hospital that I cannot do here? I realize that they can give higher Oxygen than I can. But will he need to be in ICU?

He says he's not ready to go there yet. We are both strong believers of family around is more important. If indeed he has to be in ICU visiting is limited to very short visits.

We live 2 and 1/2 hours from UCSF. Which is a hardship on all concerned. I myself who is his caretaker 24/7 will be with him all the time as I can't leave his side, We have loved each other for 41 years and have been married 28 years.

If any of you can answer what happens, or what to look for I would apprciate all the input fromm all who have experienced this problem.

Debbie S

LIVE EACH DAY AS IF IS IS YOUR LAST FIND JOY IN THE LITTLE THINGS

#2 nan

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Posted 20 July 2008 - 07:14 AM

Debbie,
I don't have any answers for you, but I wanted to welcome you to the forum. I am so sorry to hear of your husband's diagnosis. I too have CREST. At this point my digestive tract is really messed up, but my heart, lung, and kidneys are ok. I send good vibes your way. :rolleyes:
take care,
Nan

#3 Sheryl

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Posted 20 July 2008 - 07:44 AM

A Welcome goes out to you Debbie. You may know most of us and we are sure to learn more about you and your husband in the future. I am glad you have been reading the forums almost since its 2nd beginning. I can only tell you what my friends doctor told her when her relative was planning on receiving a heart. This same thing was told to another aquaintance of mine. If you admit yourself into the hospital before a holiday weekend you would almost be guaranteed a heart. Because of the amount of accidents during holiday weekends the casualties of one family bring hope to another. I don't know the survival rate of lung replacement victims. Especially those that had PF in the end stages. Your family physicians can give you the most up to date and honest information. But, if it is advised and you know this is what your husband needs then plan on it and go just before Labor Day if the doctors feel that is advisable. Your husbands decision is something you both will be glad he made once it is made. This is a dangerous disease. If you opt for the opportunity of a longer, richer life together then go for it. By the way congratulations on so many years together. My husband and I just celebrated 39 years of marriage last weekend. We hope to have several more though it is I who have Scleroderma. I'm glad you decided to finally join our little family here.
Strength and Warmth,
Sheryl

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#4 truman

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Posted 20 July 2008 - 09:47 AM

Debbie:

Such a hard decision, I know. Quite frankly, I didn't get a handle on my health until I was admitted. I had meds from three different doctors and though I brought each a list every time I went, I was over medicated. I know the travel is far but maybe there can be accommodations made for you to stay the weekend with your husband. Unfortunately with all the hospitals closing here in Jersey, there is not enough beds to go around for the patients let alone to say with loved ones. Sleep in a chair by his bedside if a bed is not available for you.

I agree with Sheryl, unfortunately the holidays cause many accidents and right place/right time usually applies. Your husbands type "O" is rare to match, but at the hospital he'll be under constant observation.
Tru

It is what it is...........

#5 Peggy

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Posted 21 July 2008 - 06:04 AM

Welcome! I'm so sorry about your husband. Could it be that if your husband were in the hospital that it may increase his chances of getting a lung? I can't imagine how hard this must be for you but he is blessed to have you by his side. Under your circumstances I think they would be more lenient about how many and how much time family can spend with him if he were in the hospital.

I wish you all the best and please keep coming back here to let us know how he is doing.

Warm hugs,

Peggy

#6 Nina

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Posted 21 July 2008 - 10:01 AM

Debbie ~ welcome and I know you will be glad you decided to join in, folks here are just full of ideas and support. You will need all the support you can get during this trying time. I'm so sorry your husband's health is so critixal.
I really don't have any suggestions, only follow your own true feelings and instincts. I think you'll find they really do pay off.
Try to keep us informed ~ you will (and your husband will) be in my thoughts.

#7 Snowbird

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Posted 21 July 2008 - 01:11 PM

Hi Debbie

I don't have any answers either but I too wanted to welcome you...you'll find everybody here quite helpful and supportive. It's a terribly difficult decision but I'm sure that together you will both make the right choice....my hope it that when the time is right, you'll both know it.
Sending good wishes your way!

#8 Shelley Ensz

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Posted 21 July 2008 - 02:01 PM

Hi Debbie,

I feel so bad for what you and your husband are going through. My husband has been in end-stage COPD for over 12 years now. He is also listed on the UNOS lung transplant list, but because he is doing so well (albeit at 5 liters of oxygen), he has chosen to be inactive on the list so far. If he elects to go active, he could have a lung very quickly; we've heard of some who do that and get a match within a day or two.

I agree about holidays being a great time for a match -- but summertime in general is often boom time for lung transplant patients...usually due to motorcyclists who are not wearing helmets.

Please discuss all your concerns with his transplant team. If he is in the hospital, they can keep him well stabilized and immediately available for the next available lung...which might be an awful lot sooner than you think! It also sounds like you live just a hair outside the 2-hour limit they put on lung transplant patients which might be another reason they want him there.

Around here, ICU usually allows unlimited visiting around the clock but it does depend on the health of the patient, too. Usually it's not a problem at all for a family member who is just sitting there quietly, and not wearing the patient down. Plus, odds are fairly good that he'll be in just a regular room -- be sure to ask his transplant nurse about where he will be kept and what the visiting regulations are.

As for being by his side 24 hours a day -- they simply do not recommend that level of devotion by caregivers, because it is too stressful and the caregiver needs their strength to tend to them when they get out of the hospital. Discuss with your husband what HE expects and establish a schedule that will work for both of you. You might also want to check into a nearby hotel to make visits easier for the duration.

Try to focus on retaining as many of your hobbies and interests as you can during this time. I take looming projects with me to ER visits, good books and art projects for longer hospital visits. Arrange to have other friends or relatives stand guard for awhile, too. Given I'm also not entirely healthy, I visited my husband on a pre-arranged schedule of two hours each day during his last hospitalization. However, I did stay a full 16 hours the day of his surgery, until he was safely situated in ICU.

But at a certain point, we need to let go and let the trained professionals take over. That's what they are paid the big bucks for...and much as we'd like to, we can't be 24-hour nurses and still live to tell about it or have the household still running when it is time for them to come home.

Good luck to both of you during this difficult but also exciting time, when he may get a good chance at another lease on life!
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#9 Sweet

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Posted 21 July 2008 - 03:17 PM

Hello Debbie,

Welcome to the Sclero Forums. I'm so sorry for the situation you are in right now. My heart goes out to you. I don't have any great advice that you haven't already received, but I wanted to give both you and your hubby a big virtual hug. Please know, we are all thinking of you daily, wishing the best outcome.
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#10 Debbie S

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Posted 21 July 2008 - 04:34 PM

Hello everyone. thank you all for the warm welcom and all the good wishes, for us.

Today has been a very trying day for both of us. First UCSF wanted to admit my husband today at the Vetrans hospital in SF. Ft Miley. needless to say we are still at home. The reason for this is that our VA clinic in the town we live, dosen't have an ambulance service nor Hospital privilages. So UCSF requested that he be transfered via Calstar or Reach helicopters, to which we are members of both, so no problem right? WRONG they would not transport unless he went to the local ER to be evaluted which stunk of $$$$$ signs all over the place. And they don't know his diagnosis and how to care for it there.

So I decided with his Pulmonoligist to transfer him my self in the am. Please send good wishes our way for our travels tomorrow. It will be a challenge to get there without running out of oxygen. But at least I am willing to do it myself.

Love to all and I hope everyone has a great day tomorrow. I will be without a computer in the motel so I can't write too much while down in SF.

With Best Wishes For All
Debbie S

#11 Shelley Ensz

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Posted 21 July 2008 - 04:44 PM

Dear Debbie,

I'm sending you all our best wishes for a safe trip tomorrow. It is great that your husband will be well-cared for and awaiting a new lung! But what hoops you had to jump through today, eh?

Please remember, we want you to keep your own health and well-being in mind during his hospital stay. Keep us posted on how things are going!
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#12 debonair susie

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Posted 22 July 2008 - 05:36 AM

Oh Debbie,

I missed sending safe travel wishes for you and your husband. Today, I have you both in my thoughts and will continue to do so, as yoou await a donor and a transplant.

Special Hugs, Susie



Sheryl,

I found the information you posted very interesting and sure can understand the thought behind it now! Thanks, Girlfriend... I'm sure all of this was enlightening...to alot of us!..........Hugs, Susie
Special Hugs,

Susie Kraft
ISN Support Specialist
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International Scleroderma Network (ISN)

#13 Peggy

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Posted 22 July 2008 - 05:37 AM

Dear Debbie:

I so hope that your trip to there was free of any problems. I am so sorry you are having to go through this and I can't imagine how stressful all of this. Please take care of yourself and I wish your husband all the best. Please keep us posted on how he is doing.

Warm hugs,

Peggy

#14 smac0719

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Posted 22 July 2008 - 02:35 PM

Debbie,

You and your husband are in my thoughts. Wishes are coming your way for safe travels and great care.
I may have Scleroderma, but Scleroderma doesn't have me!