Transplant

Transplant

Hi Im back, I havent posted in a while. Its been a bad winter for me. I went to dr last week. He is trying to get me approved for a lung transplant. Im happy for the chance for this but am very nervouse about it also. I keep thinking if I am approved what if the transplant doesnt take and I could have lived a little longer for my family. Im so afraid of the whole thing I cant sleep or anything. Does anyone know someone who has had a transplant. Im sorry to bother you all but I needed to talk to someone who understands me and doesnt talk around everything. I have gotten really bad this winter my o2's have been dropping into the 70's and its hard to get it back up I seem to run about 88 as a normal.

23 Replies

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  • Have you had an echocardiogram to rule out a hole in your heart?

  • My doctor has also recommend a lung transplant for me. I am just waiting for them to call me for my first appointment. I am extremely nervous about it. I have the same fears that you have. I hope you don't mind that I am following your post, as it will help me too. I can't offer any advice but I can offer support since I am going through the same process. I have anti anxiety pills that help me when I get really anxious buI try not to rely on them too much. Take care and God bless.

  • Following your post if thats ok.Seeing my doctor in April to chat about transplant very nervous too.

  • Following your post. This is an avenue I've also considered, but am very nervous about. Several years ago I checked the Mayo Clinic and was told I was a good candidate for a lung transplant. Too uncertain to go that route ... ???

  • God bless you I hope you get the transplant. Keep me postedplease.

  • Go for the lung transplant if yiu qualify. I had a double transplant on January 1st and even though I am still in rehab, I'm doing great. I don't believe I would have lived more than 6 months without it. Now I feel I have a new lease that our awesome God has given me for testimony and purpose. There are people in our support group that are seventeen to twenty years out. You just have to diligently wear a mask, take your meds (mine includes 42 pills a day), and stay physically fit! May God bless you as you move forward.

  • Thank you! It is good to hear from you and I will remember to pray God will keep blessing you. I have to keep moving on this because I know my time is growing near. I am praying I can get medicare and AARP to cover the cost. do you know anything about that? Its been a long hard road and I would love to see my youngest two grandsons grow up. Do you have to take the 42 pills forever if so how do you afford them. I like to have my bases covered. Thanks again! I am going to follow you so keep me posted if you dont mind.

  • I'm so glad you're doing great. I only just got diagnosed with mild copd. My heart goes out to everyone who has it so much worse than me. I believe God has given me an opportunity to be praying for all those on this site. I'm trying to learn as much about the progression of this disease so I'll be prepared. I was wondering what qualifies a person to have a lung transplant. You must be mighty brave to undergo a double one. I'll be praying for you to continue to do well in your recovery. Terri

  • As I understand your lungs have to be about ready to give out. I know mine are I think you have to be in the last stages. Im sure you know there are 4 stages. I had to learn as I went along because I let my family dr. treat me I didnt know any better. Please dont do that. Stage 1 & 2 can last about 20 years and I think every person is diffrent. If you stop smoking and take really good care of yourself you have a better chance of living longer but you need to start now.I havent had mine yet waiting to hear back from my insurance. Keep with this site and you will learn a lot. Sandy

  • Thanks for that information, Sandy. I've learned so much from everyone on this site. It's amazing how we can glean more than from the doctors. I have seen a pulmonary doctor, but he was condescending, so I'm going to another one next month. I did have the pft & was put on Siriva. I have been so sick since I was hospitalized in Nov.I couldn't understand it since it was in the mile stage. I thought I had a virus. Ends up neing how I reacted to the Spiriva. 4 months of extreme fatigue, shortness of breath & feeling sick. Thank God I figured it out. Hope to start a new med next month. I'm feeling so much bettet. I'm walking 45 min 4x weekly., drinking plenty of water & keeping active...doing what I can to stay as well as I can. Thx for listening. Praying for you. Oh yes, I haven't smoked for 24 yrs.

  • You are definitely doing the right things. Stay as active as possible. Even if you get short of breath, push through it using pursed lip breathing. Depending on your type of COPD, it can progress very slowly and you can live a normal but "slower" lifestyle. Take your meds correctly and use your rescue inhaler when needed. Our God is an awesome God and He will always be near to give you strength, comfort, and healing

  • Thx for the encouragement. I thank God for my faith. There's such peace in knowing that He loves us & has a plan for us. Praying for you also. Terri

  • Just curious which kinds of copd progress very slowly & which are faster? ty

  • Bronchiolitis obliterans, some forms of bronchiectasis, pulmonary fibrosis, Alpha 1 Antitrypsin, and CF all have a short prognosis. I know many with emphysema and bronchitis that have lived into their late 70's - 80's. I think those two depend a lot on smoking habits, exercise, nutrition, and other health issues. Most with the short prognosis diseases do not even have a history of smoking.

  • The meds will reduce some, however you will always need immune suppresssents, prednisone, various antibiotics and anti rejection drugs. I am a retired teacher so fortunately my insurance is awesome. I pay $4000 a year deductible and then I get 100%. I knew I taught all those years for reasons other than just my true passion. Some of my meds are for other health issues - diabetes, statins, thyroid, GERD, blood pressure control...so meds are an individual thing. May God bless you on your journey. Look to Him always. A strong faith seems to be a common factor among all the survivors I have met.

  • I like you would like for my four young grandsons to be able to know and remember me. They are my motivation!

  • Nice to hear from you again. My sister in law is a teacher and her daughter as well. My youngest son was a profesor but is now assoc. dean and I cant spell for beans. Anyway Im still waiting to hear back from my insurance so dont know where I stand. Im praying they will let me have the transplant. Im trusting God to have his will done. How long were you in the hospital? How long did you have to wait for your lungs? I also was reading that you cant get the transplant after 60 and Im 64 do you know anything about that? I will let you know when I hear from the insurance it may not be until I go back to the dr. next month. Always looking to God and pray for good health for you.

  • Have you been through the pre-transplant evaluation at your transplant center yet? If you are approved, they will help with insurance approval and financing. I had mine done at UF Health / Shands in Gainesville, FL. I have been in rehab with others and several are over 70. I think it depends on your other health issues, home support, and the transplant centers policies. I was placed in the transplant program for "monitoring" in 2013 when I was diagnosed with Bronchiolitis Obliterans. It has a 3 - 5 year prognosis and 2014 was my 3rd year and I was put on oxygen 24/7. I stablized for almost two years (except for a couple of pneumonia episodes). In July, I began having pneumothorax issues and had to begin having tubes inserted to reinflate my lungs. My lung function dropped from 31% to 17% in two months. During this time the transplant team did the pre-evaluation so that I would be ready. I was approved by the team on October 25th and by my insurance on October 28th. (However a miscommunication between the transplant center and my insurance delayed my listing until Nov. 28.). I had a clinic appointment on the 28th and was actively listed that day. I received my first call the next day. (But I was running a fever so I had to pass). My next call came 5 days later, but it was a "dry run" - lungs turned out to be inappropriate for me. I received my "go" on December 31st and was transplanted by 4:00 am on January 1st. A gift that I will forever be grateful to my donor for and a true blessing and miracle from our awesome God. I was in icu for three days and then transferred to regular care. I was doing absolutely great and would have been released to the center's apartments within four more days. However, I developed a chylothorax (nothing to do with lungs- they were fine) which required me returning to icu for an additional week. I ended up having to stay in the hospital 42 days before being released to the apartments. But - know this- my transplant friends that I am in rehab and support group now we're only in the hospital 7 - 10. If you live within 30 minutes, you can then go home. If you live further away, you are required to stay in the apartments until you complete your rehab, several bronchoscopies, blood work, and alignment of medicines . It usually takes 8 - 10 weeks to get this accomplished. Tomorrow I will find out if I get to go "home-home" for a weekend visit. That means my release time is drawing near! God bless you. I will keep you in my prayers.

  • No I have not been through the pre transplant or anything. My dr. just told me he was going to get things moving by getting me aproved with insurance first. I go back to him the middle of April I am going to talk to him more about all of this. I am writing down all of the questions I have for him. I pray you will be home soon. It sounds like a lot but Im sure it is all worth it. Many nights I lie awake listening to how bad my lungs sound and Im afraid to fall asleep. Sometimes I get so bad I wonder if my next breath will be my last. I just know it will be worth it to be able to breath good again. God Bless you always! Sandy Ps I will have to go to Pittsburgh for everything thats 2 hrs. south of me.

  • I'm "home-home" now and doing well. I have weekly visits for about a month and then they cut it. Ack to twice a month and so forth as time marches in.... I still have no signs of rejections, however the thought never strays far from your mind. It is definitely great to be home though. I'm getting my sugar back under control so hopefully I can go back to pills instead of insulin. That would be helpful!

  • I havent been on for a while my husband has been very sick. Im so glad you are home. I pray you dont rereject. How long do you have to worry about that or is it a forever thing. How often does that happen. Thats why my husband is on the fence about me having a transplant. Are you able to do house work and such. I cannt do much now but hopefull I will someday. Take care and God bless you. Sandy Snyder

  • Rejection is a lifelong concern (for which you will always take medications) but but it is very treatable now. They really need to find another word that doesn't sound so final. Yes, it does sometimes require additional hospital stays, but that is necessary for administering the counter acting drugs. Other conditions (many pre-existing) seem to cause more issues with survival. That's why they try to do a very careful pre-evaluation, but many with other conditions (i.e. CF, Pulmonary fibrosis, Alpha 1, lupus, etc.) still chose transplant in order to prolong their lives. I have met quite a few that have been within days, even hours, from death when lungs became available and they are four or five year survivors at this point. I'm 12 weeks out now and physically I can easily walk 30 minutes on the treadmill @ 2.5 mph, climb the 14 stairs necessary to get upstairs in our house. I'm able to cook a little and load the dish washer with the lighter dishes, and I can wash small loads of clothes. But, I feel strength and improvement everyday. (I tend to heal slowly - I know this from past surgeries, so I'm taking it slow.). But best of all, I can hold all four of my grandsons, read to them, play iPad games with them, and even a few games of air hockey! It has been worth every moment of discomfort and anxiety to continue to be a part of their lives. Keep in touch and feel free to ask any questions. I'll continue to pray for God to give you strength and guidance in this important decision.

  • Thank you so much for all of your answers. I think about it all of the time but wont get an answer untill I go to the doctor in a few weeks. My husband is looking on the darker side of it all. Hes just afraid and so am I. God will get us through it no matter what. Keep healing and God bless you. Sandy

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